Diary of a Dying Mom

Michelle named as one of the 3 most important people in US and global healthcare to have died in October

2008-11-03T14:56:00.003-05:00

Today I learned that the Editor-in-Chief of Health Affairs, the leading journal of healthcare policy and the main source of healthcare information for those on Capitol Hill, named three individuals who died in October whose "lives underscore the importance of improving health and healthcare worldwide." One was a Dean of Columbia University's School of Public Health for over 2 decades, one was a congressman who chaired the House Health subcommittee and championed a myriad of health reforms, and the third was my wife.

Michelle often wondered whether what she did was actually touching anyone, whether she really did make a difference in the vast often immovable sea of healthcare. For those of you who have read her blog, you already know the answer inside each of you. Now, so does the world.

http://healthaffairs.org/blog/

Bill Steinbach

Two articles: One about Michelle and one written by her

2008-10-22T22:05:00.004-04:00

Read the Washington Post article in which Michelle was interviewed regarding being a "difficult patient" here.

Michelle wrote a piece titled "On Being a'Difficult' Patient" that was published in the Narrative Matters series in the journal Health Affairs. Some of you may remember her post in early September regarding her trip to DC to attend the Narrative Matters conference. In her typically humble fashion, she mentioned and provided links to others' articles, but not to her own. The link above will take you to her article, and you can click on the "Reprint (PDF)" link to download it.

A Brother's Tribute

2008-10-21T23:45:00.003-04:00

This was read by Keith Mayer, Michelle's younger brother, at her memorial mass.

Bill, Amelia, Aidan, and Father Kevin, thank you again for a beautiful service and your dedication to this family. As I look out to the crowd this morning I see many loving and familiar faces that produce a memory for me personally and my family. For those in the audience that do not know me, my name is Keith Mayer and I am the youngest of Michelle’s four brothers or as Michelle always referred to as “The Keither”. On behalf of the Mayer family, Michelle’s parents Jim and Claire, her brothers Anthony, Jimmy and Mark, I want to express what we feel to those who mourn with us today in this Church and back in Philadelphia. We loved her as a sister, as a mother and as a daughter and I stand here today with great pride and energy to eulogize my outstanding sister.

In order to convey her daily struggles with family, friends, and the world, Michelle authored a daily blog which illustrated in acutely articulate writing her thoughts and translations of fond memories of the past, the unpredictable present, and her hope for the future. To me, this blog will forever serve as Michelle’s memoirs - the stories are vast, the writing eloquent but yet the lessons simple. On every entry, Michelle never stopped teaching. Whether or not it was her intent in those entries I don’t know, but her sentences led to paragraphs of life’s happenings and the reasons behind those happenings and what can be learned as she would convey this in simple stories so that any reader can comprehend and apply to their daily life. Michelle’s writing centered upon childhood memories of growing up in Philadelphia, picking buttercups with Uncle Snowy, her fabulous high school years and the lifetime friends she made during those four years, conversations and specific memories with Bill, Amelia and Aidan, the goodness of our parents, Bill’s grandfather Mel, Watson the dog, and many others. But on July 14th there was an entry that touched me deeply entitled Nothing Gold Can Stay:

The entry spoke of a day at Emerald Isle, off the coast of North Carolina, and how the day was a serenely beautiful moment where the kids were carefree, Bill and Michelle were in each other’s embrace, and it was at this point when Michelle lifted her head from Bill’s shoulder and recited the words of Robert Frost:

Nature’s first green is gold,
Her hardest hue to hold,
Her early leafs a flower;
But only so an hour,
Then leaf subsides to leaf,
So Eden sank to grief,
So dawn goes down to day,
Nothing gold can stay,

Michelle’s lesson in this blog entry was clear - golden moments don’t last and that’s why they are golden.

When I think about gold I think about its brilliance and luster, but also the rareness of gold. In my sister those same qualities were nurtured at a very early age. It is of no secret for at least anyone that held a conversation with Michelle or read any of her writings that she was clearly brilliant. I, on many occasions, would have to interrupt conversations to reference a dictionary to figure out exactly what she was saying to the point where the conversation would cease because Michelle would lose her train of thought in addition to her patience waiting for me to get up to speed. Further, her intelligence was so great that she didn’t realize she had the ability to clear out a whole dining room as her and my father would go head to head on any issue, and I mean any issue. They would argue over why one fork would shine brighter than another; an exaggeration, but clearly a golden moment. But the rareness found in gold that generates its luster surely flowed through Michelle much the same way. Michelle gave us strength in HER time of trouble, wisdom in HER time of uncertainty, and courage in HER time of need; she will always be by our side.

During Michelle’s suffering I would ponder a simple question to myself over and over again, Where is God? When a wife in her prime and a mother of two could be forced to suffer such a grueling disease rather than the glorious freedom to digest all the great things about life without any interference: Where is God?; and every time I had the same answer - I don’t know. But when I think about it further and I reminiscence about the doctors clearly telling Michelle that it would not be in her best interest to get pregnant, that she would not be able to handle it, that her body would battle her all during the process and placing herself in grave danger. Well, her body did battle her and Michelle won. So, every time I lay my eyes on Amelia and Aidan I say to myself “there’s God” and every time I lay my eyes on my brother-in-law Bill, who’s endless, tireless, unstoppable dedication for my sister remained constant and his resolve to love her to death do us part … again I say “there’s God”.

In Michelle’s suffering and death, I witnessed what people are capable of; the goodness that exists in everyone flourished during Michelle’s time of need, Bill’s time of need, Amelia and Aidan’s time of need; people taking care of each other for no other reason than it was the right thing to; it is important for us to talk about that good, to remember that good. I saw my sister surrounded by a community that displayed love, kindness, care, friendship and sacrifice of time to assist in any way possible. In Michelle’s death I am proud and humbled by the people present today that embraced all those qualities, because in the end it is always important for us to remember that standing together as a people, a human race, we can do amazing things and that is what I saw with this community and it should never be forgotten by each and every one of us as our lives continue.

My sister needs to be remembered as having a predominance of courage over timidity who, with the help of Bill, saw wrong and tried to right it, saw suffering and tried to heal it, saw disease and tried to stop it. Those of us who loved her and pay tribute to her today pray that what she was to us a loving wife, a doted mother, a beloved daughter, an admired sister, a charismatic relative, and an inspirational friend will someday come to pass for everyone as an example of strength in the human spirit and the endless bounds that spirit can stretch. As I reflect on conversations with Michelle over the years and her writings, and for every one she sought to touch and who sought to touch her, I mirror her philosophy towards life in the words of George Bernard Shaw “some people see things as they are and ask why, Michelle dreamed things that never were and asked why not?”

Michelle's Slideshow

2008-10-21T12:51:00.002-04:00

Michelle created this slideshow of her life, which was shown after her Memorial Mass.

Michelle discusses her illness (June 2008)

2008-10-17T14:27:00.002-04:00

Michelle's Obituary

2008-10-17T12:29:00.000-04:00

Michelle Lynn Mayer

Michelle Lynn Mayer, age 39, of Durham, NC, died October 11, 2008 at the Duke Hospice Inpatient Care Facility after a long battle with scleroderma. Michelle was born January 18, 1969, in Philadelphia, PA, to Claire A. (Catallo) Mayer and James A. Mayer. On October 11, 1997, she married Dr. William J. Steinbach in Philadelphia, PA.

Michelle’s commitment to leaving the world a better place than she found it has been reflected in her educational and professional career, as well as in her community and church activities. Her primary concerns centered on improving the access to and quality of health care for underserved children, supporting women and families, promoting awareness of scleroderma, and providing a forum for families facing terminal illness.

Michelle graduated Summa Cum Laude from the University of Pennsylvania (1990) with her B.S.N. in Nursing and a minor in Economics from the Wharton School; she earned her M.P.H. in Health Education (1992) and Ph.D. in Health Policy and Administration from the School of Public Health at the University of North Carolina at Chapel Hill (1997). In 1994, Michelle served as a Health Economics Consultant for the World Bank in Washington, DC and Nairobi, Kenya. During her graduate career, Michelle was named Outstanding Doctoral Student and she received several prestigious fellowships.

While living in California, Michelle was a Clinical Research Associate in the Department of Pediatrics at Stanford University (Oct. 1998-Nov. 1999). She also served as Research Director of the Children’s Health Initiative at the Lucile S. Packard Children’s Hospital in Palo Alto, CA (Nov. 1999-Apr. 2001).

From 2001 until 2007, Michelle was a Research Fellow at the Cecil G. Sheps Center for Health Services Research and a Research Assistant Professor in the School of Public Health at the University of North Carolina at Chapel Hill. She was awarded numerous federal grants to support her research, which focused on health care access and quality for underserved and special needs children. Michelle’s scholarly work has been published in several leading journals, including Health Affairs and Pediatrics.

In her capacity as Research Assistant Professor, Michelle taught several courses and seminars in the graduate program of the Department of Health Policy and Administration in the School of Public Health of the University of North Carolina at Chapel Hill. She served as a mentor to five Ph.D. and two M.P.H. students, guiding their dissertations and theses to completion.

Michelle has always demonstrated strong leadership in her community. From 2001 to 2004, Michelle was active in the Triangle Scleroderma Support Group, leading support group meetings and promoting education and awareness of scleroderma. In 2002, she founded the Elizabeth Ministry at St. Thomas More Catholic Church, and led it until 2005. The Elizabeth Ministry supports women and their families during the childbearing years. She also volunteered with La Leche, an organization that promotes breastfeeding.

Michelle’s belief in the power of community and friendship sustained her as well as those around her. Shortly after moving to Durham, Michelle initiated a neighborhood group for families with young children. The group hosts many annual events and serves as a support network for all the families involved, including Michelle’s family during her illness. Michelle also continued to volunteer at her children’s school, even after her illness had curtailed many daily life activities.

In May of 2008, Michelle began a weblog of essays on parenting, living, and dying, to share her experiences with other families facing the challenge of terminal illness (www.diaryofadyingmom.blogspot.com). Since late August, the site has been visited over 70,000 times, and it includes testimonials from hundreds of readers whose lives it has touched.

Michelle is survived by her husband, Dr. William J. Steinbach, her children Amelia and Aidan, ages 9 and 7; her parents, James A. and Claire Mayer, and her brothers, Anthony, James M., Mark, and Keith Mayer, all of Philadelphia, PA.

A memorial mass will be held on Thursday, October 16, at 10:30am at St. Thomas More Catholic Church in Chapel Hill, followed by a reception celebrating Michelle’s life, complete with a slideshow she created. Her remains will be inurned in the columbarium of St. Thomas More Church upon its completion. Walker’s Funeral Home of Chapel Hill is handling the arrangements.

In lieu of flowers, memorial contributions may be made to the Scleroderma Foundation (www.scleroderma.org, 300 Rosewood Drive, Suite 105, Danvers, MA 01923) or to the Duke Hospice Inpatient Care Facility (www.dhch.dukehealth.org, 1001 Corporate Dr, Hillsborough, NC 27278).

Final Farewell - by Bill Steinbach

2008-10-17T11:17:00.003-04:00

This was read by Michelle's husband, Bill Steinbach, at her Memorial Mass on Thursday, October 16, 2008.

I started writing this eulogy in 1996. That was the year Michelle and I were engaged and then shortly thereafter she was diagnosed with an incurable terminal illness. I didn’t start writing because I am grim or pessimistic, in fact I was Michelle’s most boisterous cheerleader. I just wrote this gradually over the years, letting the words slowly fill the pages the way sand seeps through your outstretched hands at the beach, because I knew that one day I would need it.

Michelle was loved by so many, touched so many lives, and made each person feel special. Sometimes I had to chuckle at the number of people who knew and loved her anywhere we went. If it was at church, it would take us an extra 20 minutes to leave because of all her friends that wanted to catch up with her. At Forest View Elementary, anytime we walked down the hall she would be stopped by an unending collection of teachers, aides, other parents, and children. At a school event one evening a young blonde boy of about seven darted up to her in the hall and threw his arms around her and told her how happy he was to see her. After he scurried away back to his mother, who carried the same surprised look on her face as I did, I asked her, “Who was that?” She responded that he was a child in class whom she once noticed had trouble reading so she had spent extra time once every week for the past two months working closely with him. Once again I was simply in awe that she could touch so many. After we were at the Duke inpatient hospice facility for about 4 days the nurse practitioner told her, “You know, the entire staff adores you.” Michelle seemed genuinely surprised by this declaration, but I smiled inward and thought to myself “That figures, everyone loves her”.

A month ago a friend of mine was trying to console me and said that he was sorry that the way my life had unfolded was so unlucky. I assume that what he meant was that I was unlucky to be 36 years old and losing my wife. However, I think my confused stare caught him off guard, based on the perplexed gaze that reflected back at me. Unlucky, I thought? This all might be unfair, unjust, and undeserving, but I have never once considered myself unlucky. While all of you laughed at Michelle’s insatiable wit, cried at her brutal honesty, and basked in her raw humanity when you were with her - I got to keep her. I was the one who got to take her home, I was the one able to smirk and laugh together at our countless inside jokes, and I was the one who had endless late night dialogues with her about everything imaginable as we drifted off to sleep. I was lucky to have met her, lucky to have married her, and lucky to have loved her. Amelia and Aidan were lucky to have such an incredible mother and life teacher. Unlucky? I disagree. In fact, I am the luckiest man here. I had Michelle.

All of our friends have been unimaginably helpful – both in our many hours of need and when the waters seemed calmer. I once heard that character is what you do when nobody is looking, and I now think that friendship is what you do when nobody asks you. True friends just know, they just understand. Friends don’t have to be told, they sense it. They fill you up when you are empty, and they pick you up when you have fallen. We have honestly lost track of the sheer number of friends and neighbors who have sat by our family through the 10 rounds of chemotherapy, the numerous surgeries and hospitalizations, and the constant and draining demands. Nothing was ever easy for Michelle and I and Amelia and Aidan. Nothing. Nothing was ever carefree. But through our friends, we were able to live. It takes a village, and I am so thankful that I live in this village.

The goal of life, the goal of anybody’s life, in fact the only real goal in all of our lives, is to leave this world a better place. To create a lasting impression that you were there, that you made a real difference. To touch lives, to love and be loved. Michelle accomplished all of that and has forever bettered the existence of so many. Take a look around you in this church and you will see what she has done. Walk down the streets of our neighborhood and you will see the product of her work and love. She taught us about living, and now taught us about dying. I have never had a better teacher.

Michelle would have turned 40 in this coming January 18th. I can remember her telling me shortly after we first met that Muhammad Ali and her shared a birthday. I didn’t think much of this bit of trivia at the time, but over the years I thought how prophetic this little fact was, that she and the greatest fighter of all time shared a birthday. Shortly after she was diagnosed with scleroderma, she was told by two different rheumatologists that she would die very quickly. She was told that we would never have children. The problem was, those people did not realize Michelle and Muhammad Ali shared a bond and she was just as tenacious as him.

Michelle is also a gifted, witty, insightful writer. She has written for years for fun, for solace, and more recently for creating her legacy. Many of you followed her trials and tribulations through the blog she started. For those less technologically-inclined, a blog is a compilation of writings available on the internet. At the urging of her friend Stephanie, Michelle began to chronicle her life. As of yesterday there had been over 83,000 visits to her blog to read her writing. That fact alone is astronomical – 83,000 times people rushed to read the latest morsel of insight, the newest kernel of inspiration Michelle had offered. But what actually amazed me most were the comments that people left detailing how her prose had moved them. There were literally hundreds of people from around the world who had never met her but left comments that her inspiration, her courage, her honesty, and her strength had literally changed their lives. People who had stumbled onto her writing had spent hours and hours absorbing all they could, trying to wring out that last word like siphoning water from a sponge that has already been well-used. These confessions were not simply “Thanks for the eloquent writing”, but instead “Thank you for teaching me life’s lessons that I have been searching for years to find”. She made them live a little better, love a little more, and cherish each moment as it passes. She lived her life. Several people have told me that Michelle lived her life more fully preparing for her death, than most live during their entire lives. There are many academics here today from our two professional careers who have written a lot, but I doubt any of us has had hundreds of people sincerely write to tell us that what we wrote literally shaped their outlook on life.

Michelle had many people visit her over the last few months. As she would hold court, people would come. Michelle did not want each visit to be a rehash of her own medical troubles, and really simply wanted to return to normalcy and friendly banter. Inevitably, she would tell me, the conversation would slowly switch to something like “Well, I know this doesn’t compare to your problems, but …” and then the person would launch into a tale of some difficulty with a spouse, a co-worker, a project, whatever. She told me that she felt like a lightening rod, and people would come to her for advice, almost as if since she was bearing her soul that she must be someone who could be trusted. Now mind you that she embraced this opportunity and did not view the imposed role as a counselor as a burden. She was in fact relieved that she could, however briefly, serve as a healer instead of as the one who needed healing. I purposefully sat next to her for only a few of these visits, but I can remember one specific friend pouring out her current strife. Michelle sat like King Solomon and listened attentively for about 20 minutes, which if you know Michelle was a Herculian feat in itself. After listening she paused and offered a single piece of advice to the troubled friend. “Every day is a gift, act accordingly”.

Michelle loved to travel and she loved to eat good food. The marriage of these two devotions is apparent in the two times we lived abroad as a family in Europe. In the summer of 2004 we lived in Paris as I did a sabbatical at the Pasteur Institute and most importantly spent our time drinking and eating great French food. The children were 5 and 3 years old at the time and they became instant travel affecianados like their parents. About two years ago when Michelle sensed her own decline she confided in me that she had always wanted to live in Italy before she died. I then arranged with a colleague at the University of Perugia to spend a summer amongst the beautiful rolling hills of Umbria and in the summer of 2007 we lived in Italy simply because my wife wanted to do it. There we laughed and traveled as a family, creating invaluable memories. In fact, if you can convince your boss that spending a summer in Italy is necessary for your career, I highly advise it.

I want to end by telling you two quick stories about Michelle. While there are only a few of you who know about each story, my suspicion is that I am the only one who knows both. Today you can all share in what I have kept secret for years.

About 4 years ago Michelle had started a ministry here at St. Thomas More called the Elizabeth Ministry. She began it to fulfill a need – the need to support and help women with issues surrounding childbearing and infertility. Women helping women. Since the inception, the ministry has assisted many and was a great source of joy for Michelle. One day Michelle got a phone call from a 20 year old woman named Sandra from rural Pennsylvania who was unmarried and pregnant. Sandra was abandoned by the unborn child’s father and ostracized by her parents. She had driven down to a town she had never heard of called Chapel Hill with a new boyfriend to look for work. After a few weeks in Chapel Hill the new boyfriend left and Sandra was abandoned again. Her parents were so appalled at the unplanned pregnancy that they had disowned her, and now she was in a new place without anybody or anything. As she later told Michelle, Sandra went to St. Thomas More one Sunday for mass as a last resort – she literally did not know what else to do. As she was leaving mass, she saw the advertisement for the Elizabeth Ministry in the church bulletin and called our home phone number. Michelle talked to her and then later met with her. After Michelle heard the story she called around for Sandra – talking to this church, other churches, homeless shelters, and various pregnancy support services in the area. Each place offered a little something – mostly pamphlets, some clothes for mom or baby, but only the homeless shelter said that they could offer her a place to live. Michelle was not satisfied that a 20 year old pregnant girl should be living in a homeless shelter for the next 4 months.

This is when I got one of those unforgettable pages at work. “Yes, honey, what do you need?” I asked when she picked up the phone after her page had reached me. Quote: “Oh nothing big, but there is a 20 year-old girl that is pregnant and needs a place to stay for 4 months and I told her she could live with us. Oh, and Aidan needs more chicken nuggets at the store.” After a several second pause while I tried to interpret just what exactly I had heard, I responded with the questions that any sane spouse would ask – what in the world are you talking about, what do you know about this person is, and how did you meet her? She responded in her characteristic fashion “Yes, I know what I am doing, I already told you she is a 20 year-old pregnant girl, and I met her today after she called me. You really need to listen better. Oh, and make sure to get the large bag of chicken nuggets at the store, not the small one because those are so overpriced.”

At this point I made a mental note to contact the inpatient psychiatric facility on my way home. Later that week I met Sandra, but it was just a formality. Michelle had already determined she was an honest soul who was just wayward and needed help. I asked Michelle how she knew, and she responded that she just did. Sandra lived in our guest room for 3 and ½ months, and when she moved back to Pennsylvania she took with her some of our old baby furniture and clothing. To this day, we still get a card every Christmas from her and her daughter Bailey with a note in it that she remains eternally grateful that when she was most in need, a stranger believed in her, trusted her, and loved her when nobody else would.

Second story. I would suspect that statistically there are several of us in this church today that have been named after a family member or have named their own children after a family member. However, how many of you are named after a non-family member, or to think of it another way, how many of you have been moved so much by an individual that you have named your own children after a non-family member? When Michelle was getting her PhD she spent a summer in Africa working for the World Bank drafting a health care plan for Kenya. She spent most of that summer in Nairobi and was given a per diem amount of money to stay in one of the nicest hotels in the city. While this hotel was reportedly nice even by American standards, the per diem she received was astronomical by African standards. Michelle, of course, felt this inequity was unacceptable and she simply could not tolerate the monetary injustice. So, Michelle abandoned the posh American-style hotel and instead transferred to a perfectly comfortable Kenyan hotel, unloading the financial difference as incredibly large tips to whomever she could in the city in order to spread the wealth. While at this African-run hotel she met a woman who worked at the front desk of the hotel whose name translates to Lucy. Michelle and Lucy became friends throughout the summer, but Michelle later told me that it took some time as Lucy and the other Kenyans were just unaccustomed to wealthy American guests staying at their hotel, much less wanting to strike up friendly conversations. Michelle told Lucy about the beauty of America, and Lucy told Michelle about the beauty of her home country, Kenya. The bound was formed. A few years later Lucy became pregnant, and we received an extra card that year in addition to the semi-annual update from Kenya. Lucy had given birth to a beautiful baby girl, but her friends were perplexed as to the odd name she had chosen for her Kenyan daughter – she called her Michelle.

Years later Michelle and I realized we needed some help with the household chores as two full-time working parents and we hired a cleaning lady named Gloria. Gloria and Michelle were from vastly different backgrounds, but quickly became friends and Gloria soon became a member of our family. Gloria would practice her English, and allow Michelle to practice her Spanish. Gloria would tell Michelle about her crazy family in rural Mexico, and Michelle would tell Gloria about her crazy family in Northeast Philadelphia. Another bond was formed. A few years later Gloria became pregnant, and after the birth Gloria proudly told us the name of her new daughter – she called her Michelle.

Today is a good day. It will be hard for many of us to see that today, or tomorrow, or the next day. But it is. Michelle suffered for a long time. Today she is finally at peace, and today the healing for all of us begins. She had a ridiculous tolerance for pain and suffering, and remains to this day the strongest person I know. Scleroderma affected everything in her body, no organ was spared, and everything was in constant pain or discomfort. But the average person meeting her would probably not know that, she was simply a gifted magician able to cover it up and grimace through life.

Michelle was adamant she wanted people to remember her for her vitality, not her illness. Michelle was able to plan her own funeral – to pick out readings and songs that meant something to her, and to complete a slideshow of her life that she made and set to music. Immediately following this mass we will bring in a projection screen and remember Michelle by watching her life in pictures. She desperately wanted her friends and family to remember her for her life. When I asked her about continuing the annual New Year’s party we have thrown for several years, she responded “Make it a hell of a good party, the kind of big party that we always throw.”

When you die, what is the measure of a person? It’s clearly not the money you’ve amassed, or the papers you wrote, or the deals you closed. Instead, it’s the change you have made. It’s the number of people in the church celebrating your life and saying good-bye, it’s the over 83,000 times that people have read about your life and the impact you have made, it’s friends you’ve created along the journey willing to do anything, absolutely anything, because of who you are. That’s what you want when you die. That’s what Michelle got.

So to Michelle, the eternal mother of Amelia and Aidan, my wife, my lover, my partner, my confidant, and my best friend. Until we meet again honey, I love you.

Goodbye - by Michelle Mayer

2008-10-17T11:10:00.002-04:00

This was written by Michelle and read by one of her best friends, Marie, at her memorial mass on Thursday, October 16, 2008.

Today is your day to say good-bye to me and support one another. But given my advanced warning, it is also my day to say good-bye to you. Whether you played a leading or secondary role in my life or merely had a cameo appearance, thank you for being a part of it. Sometimes even the most quixotic of meetings are life-changing.

I hope that you do not feel sad for me. I have had a good life. The fact that I wanted more of it is merely a testament to how much I enjoyed the ride. I had parents who loved me and supported my dreams even when it meant losing me. I had four brothers who taught me often and well to roll with life’s punches, literally and figuratively, and who took a pride in my accomplishments that I could never bother to muster. I grew up in working class Philadelphia where I learned not only to appreciate what I had but also the value of hard work.

Throughout my life I have enjoyed the benefits of wonderful friendships. My friends from adolescence -- Marie, Sue, and Kevin -- have been with my through it all and, at times, their love and support carried me. Had I known that losing everything in a housefire would set in motion a string of events that led to my friendship with Grace, I would have burned the damn thing down myself. In Grace, Marie and Sue I found the sisters that family did not provide. There have been so many friends along the way – too many to name but they know who you are – who have made my life a richer experience. Paul and Brenda introduced me to Hearts, Greg and Stephanie to bourbon and ginger, Kathryn taught me to mother without yelling constantly by sheer example, Jen was my faith when I had none … the list goes on and on. My life would have been hollow without these relationships.

I married into a wonderful family that welcomed me with open arms. Even though I had enough brothers, I was happy to welcome two more and engage them in talking smack. And my sisters-in-law were well worth the wait: wonderful women with big hearts and ready ears.

I have traveled the world and seen amazing sights. I have enjoyed fabulous food and drink at home and abroad. I have laughed often and hard enough to cause pain or pee my pants on multiple occasions. I smiled a lot. I danced whenever the opportunity presented itself. I sang.

I knew the love of a wonderful man who accepted me unconditionally under less than ideal circumstances. I never doubted his love for even a moment. He was my rock and my safe haven.

I had two beautiful, wonderful children who showed me the wonders of the world through unjaded eyes. The peace I experienced holding then as infants was otherworldly. As they grew, I grew with them; rearing them made me a better human being. They have been my life’s greatest joy. And leaving them is my life’s greatest pain.

I think regrets are worth mentioning, maybe something can be gleaned from them: I wish I kept performing even when I was only good enough to be in the chorus; I wish I had worked less, I wish I had been more gentle with people’s hearts; I wish I had read more books; I wish I had done more for those less fortunate; I wish I had listened more and talked less.

Despite these regrets, I feel it has been a life well lived. What more could I have asked for? I had everything I ever hoped for and then some.

When Amelia and Aidan were small we had a conversation about death. They asked if I would die some day and I answered them honestly. “But then I won’t have a mother,” Amelia responded. I paused and then reassured them, “You will not always have me physically, but I will always be in your heart.” “And you know what,” I continued, “Life gives you lots of mothers, not just the one who raised you. I’ve had lots of mothers and you will too. You will always have someone to mother you when you need it. You just have to be open to them.” So this is my dying wish, be a mother to my children as needed. And a friend to Bill.

And until we meet again, godspeed.

Michelle has Found Peace

2008-10-12T09:32:00.005-04:00

Dear friends,

Michelle Mayer - my wife, my lover, the mother of my two children, my confidant, and my best friend - died on Saturday, October 11th at 3:30 pm. October 11th was our 11th wedding anniversary, and when she died we would have just been leaving the church in Philadelphia. The only purpose on this planet is to leave it better than you found it, to touch lives, to love and be loved. She accomplished all of that and has forever bettered the existence of so many. She taught us about living, and now taught us about dying. I have never had a better teacher.

Please know that she died with family surrounding her, finally without pain, and at peace.

She has asked that any memorials be sent to the Scleroderma Foundation or the Duke Hospice (please specify the Inpatient Care Facility).

Please post your love and wishes on this website, as it will immortalized. Thank you all for making her last few months so much more exciting. She literally had lost the will to live before she started this blog, and your thoughts and encouragement buoyed her and actually kept her living. I cannot begin to articulate the love and gratitude she felt for you all. For that, I am eternally grateful.

The funeral will be held at 10:30 am on Thursday, October 16th at St. Thomas More Catholic Church in Chapel Hill, NC with a reception celebrating her life, complete with a slideshow she created, immediately following. After the mass I will post an essay she wrote for it entitled "Goodbye" as well as the Eulogy I will deliver.

Forever in my heart,
Bill

Homecoming

2008-10-09T19:30:00.002-04:00

I arrived home yesterday afternoon. After my dose of Phenergan (to treat the nausea from the narcotic which suppresses the cough), I immediately fell asleep. These days I always think about the song "Go Ask Alice." Of course my drugs are not nearly as fun. For the most part, my drugs just make me very sleepy and disoriented. In fact I talk in my sleep constantly now and I also find myself typing on some imaginary computer. Then there is profound diaphoersis, whole body sweats, that happens 2-3 times a night. I have never sweat like this in my entire life. With each event, I look like I just ran a marathon.

Last night as I drifted off to sleep I hoped that being in my own bed might make a difference. Unfortunately, I was mistaken. The night was awful. By 2:30am, Bill needed a break and my mother and father took turn keeping vigil by my bed. I finally found sleep around 6 and slept through the morning routine. Upon awakening my symptoms reappeared; I was having great difficulty breathing. In fact, I felt like I was drowning.

At one point I asked my mother the time. I assumed she was going to say that it was well after noon. "It's 10:45," she answered. I was devastated: how was I possibly going to make through the day? Eventually the nurse got an order to increase my continuous dose of fentynal from 25 to 37.5 micrograms. After that I could finally breathe.

In addition to the breathing difficulties, the skin hardening, which had stopped years ago, has returned with a vengeance. The skin on my legs and torso are so taut that it is difficult to stand up straight. The worsening in my illness over the past weeks alone has been extraordinary.

My parents, Marie, and Bill kept vigil by my bedside much of the day, sometime all together and sometime one-by-one. My mother has lost so much weight from her constant worry. She has aged so much in the part 9 months. My dad stares off into space. I wonder where his mind goes: old memories, a comforting place, or simply nowhere. Despite their grief they both told me repeatedly today, "Let go, MIchelle. You have suffered enough." My mother told me how proud she was of me in so many ways. She had always mourned my leaving home at 17 never to return. She perceived that time and space as wedges in our relationship. "In the past nine months," she said, "I feel like we felt in love all over again." I feel the same way. I know how much she loves me. I told her how much I loved her homemade hot chocolate on cold days, the way she she celebrated every holiday, and the way her cupcakes always sold out first on cupcake day.

After I showered today, my mother helped dry me off and handed me my robe, "Can I have this when you are gone?" She asked. It's so like her, to ask for something simple rather than a piece of jewelry or the like. "That way I can wear it in the morning when I drink my tea. "Please come visit me," she cried. "I will mom. I will."

Bill and the home care nurse agreed I needed to go back to the inpatient facility so I am going tomorrow. I asked Bill point blank, "How much more time do you think I have?" "A couple days," He answered soberly. To be given that prognosis by my eternally optimistic husband is hard. I did finish everything I wanted to do ...

I will try my best to keep writing. I'm stoned alot of the time so don't expect much from me!

The Wonder Pill

2008-10-08T14:35:00.003-04:00

A glance at our stash of medications would undoubtedly cause one to wonder if this is a house of hypochondriacs. There are easily 30+ vials of prescription drugs in our linen/medicine closet (yes, we have to have a closet for our drugs, there isn't a medicine cabinet in the country large enough to hold them all). Of course, I don't take all these medications currently; most of the vials are half full of pills that didn't have the expected therapeutic benefits or had,a slew of side effects that easily outweighed any therapeutic benefits. I seem to specialize in being among the <1% of patients that experience the "rare side effects" you hear about on the commercials for different drugs.

Prior to developing scleroderma, I rarely took medicine. This was largely due to the fact that I was rarely sick. Whenever I developed a fever, I was a big believer in sweating it out. I climbed into bed underneath every blanket I owned and sweat all night. Usually by morning I was fine. Of course, I might have been fine without the blanket torture, but I held fast to my cure-all approach to fevers.

The only other drug I remember taking with any frequency was Motrin. I began taking Motrin in high school. A fellow student was the daughter of a pharmacist and she had these "wonder pills" for menstrual cramps. If you were having a rough day you just needed to find her and ask for one and she handed it over, free of charge. I have no idea why she didn't charge us, I was have easily forked over my lunch money for one of those pills on a bad day. All this was occurring about the time the Motrin became available over the counter in 200 mg tables (1984), but since none of us knew what drug we were taking, we just kept going to our friend. None of us was going to own up to our parents that we had a drug supplier at school so we remained pretty ill-informed about the identity of the "wonder drug." I finally figured in out that it was Motrin in my college pharmacology class, four years later.

This paints a picture of how innocent we were. Yes, there was a drug dealer on campus who gave out medicine for free to her friends with cramps. That was as hard core as we ever got with drugs. Looking back, it was still pretty stupid of us. We could have unwittingly taken something harmful. But I still think the story is kind of cute.

Of all the meds I have taken over the years, Motrin is still my favorite: it works for fevers and aches and pains. That covers a lot of ground in the world of symptom management. My kids are already hooked on it for their fevers and growing pains (which Amelia has a lot of these days). I suppose it's not too bad as far as addictions go.

The Road to Happiness

2008-10-07T19:57:00.003-04:00

I am back at home and symptoms are largely under control. I tend to sleep a lot so I didn't get around to writing much today.

The kids were happy to have me back at home, especially Aidan. He was so worried that I was never coming back. Aidan and I spoke a little bit about death today -- its permanence mostly -- and I assured him that he could still have a happy life even if that life does not include my physical presence. I tried to use a metaphor. I explained that there were two different ways we use to go to the mall, one using the highway and one using back roads. I told him to think about the mall as happiness (ok, so it's a very capitalistic metaphor) and that there are many roads to happiness. He may have to shift paths when I die or rely on someone, like his dad or his sister, to steady him along the way. "But you will find happiness again," I promised.

He did not find my metaphor convincing so I just let him sob in my lap. The poor little guy is so consumed with my death, but he seems to be open about it with his friends and teachers. His teacher visited me tonight and told me how open he is with her and his classmates about my illness and hospitalization. I was so glad to hear that he is reaching out to others in his own way and that he has some really marvelous friends to depend on. Their 7-year old hearts seem very big! And we are blessed to have teachers who are so dedicated to shepherding both Amelia and Aidan through this difficult time.

In some ways its a privilege to die slowly. We have had so much time to adjust and prepare. Our friends, family, and neighbors have proven themselves to be a band of saints with seemingly bottomless wells of generosity, love, and kindness. Because of all these wonderful people I feel confident that Bill, Amelia and Aidan will not only survive my death but thrive despite it.

In some weird way I feel lucky.

2008-10-06T17:59:00.002-04:00

Last week I was sitting on the front step, waiting for Bill. I eyed the chrysanthemums I planted years ago; they return faithfully every year bigger and better. Likewise, the lamb's ear, that seems so delicate with its fuzzy leaves, survived the summer's heat and stays into the fall. It rests for winter and returns again in spring. Every year the lamb's ear takes up more and more real estate in the front year. It just grows and grows without any involvement on my part.

Back in June, Marie and I stood for a while in my garden one morning, “I used to have such a beautiful garden. I would plant all along the berms until they overflowed with blossoms and foliage.” Now only the perennials are there and the weeds are overtaking them. “I look at the garden and it is in disarray, and the house is in disarray, and I wonder what is going to happen when I am gone. All these things that I tended to so carefully, so lovingly it will all just disappear.” Marie gazed at me with her beautiful, feline-like blue eyes with a look of dismay. She tried to make me see what I couldn’t: that the family I created, the children I raised, the loving home I helped establish would all go on, that I was already permanently a part of the picture.

As I pored over photos over the last few weeks, I realized how few I had of me and the children. I was always the one behind the lens. "You cannot see me," I thought to myself, looking at a picture of Bill holding to towel wrapped children on a beach in France, "but I was still there." I realize now that I will never really leave. My children, husband, family, friends will carry them with me in their hearts and their memories. Perhaps that is eternal life.

Mix Tape

2008-10-04T17:17:00.011-04:00

Last month when my brother Keith was visiting, I asked him to clean out and organize our entertainment center. Keith is a fastidious fellow, the ideal person for an organizational task. He likes things neatly stacked, artfully arranged, and, by all means, in alphabetical order. While cleaning out the center he came across a "mix tape" I made for Bill before leaving for a nearly month-long tour of Eastern Europe. I suspect that like most guys he acted all happy about the mix tape but, deep inside, thought it was a corny idea.

Mix tapes were an icon of courtship in the '80s and '90s. You knew things were serious when someone made you a mix tape. It was either a great way to cement a relationship or a surefire way to send an ambivilant suitor running, screaming into the night. In our case, it was the former. I looked over the CD and wondered why I had put "Muskrat Love" on it. "Maybe it was the closest I could get to a rabbit in a love song" I thought to myself (Bill had a rabbit named George when we met. He thought the rabbit was a boy; we discovered it was a girl when we tried to have it neutered because it keep trying to mate with my sweaters).

When I finished the kids' nests of gifts, CD, journals, etc. Bill asked, "Have you left anything behind for me?" I felt horrible. I had been so focused on the kids that I had given little thought to leaving something behind for BIll. "What would you like?" I asked. "Just a box of memories," he answered quietly.

I had been collecting a few things. I had a blank Valentine's card left over from a year I was too pissed at him to sign it (I know, I'm a bitch). And I had a an extra birthday card because last year I accidentally bought two; in fact, I bought the same exact card twice. The scarf originally intended for Aidan was transferred to Bill. (My friend Victoria graciously finished it for me when I developed too many hand wounds to complete it myself). Bill is a warm-natured person and hardly ever wears a coat in NC; he will never need the scarf for the purposes of keeping himself warm. But I thought he could keep the scarf in his bedside table and hold it when he missed me. Then I thought about the mix tape. I added it to the pile, but knowing there will soon be no device upon which to play it, I made him a CD of the original tunes (including Muskrat Love) and added several more that have had special meaning over the last 12 years since I made that first mix tape.

I was working on the CD the other day when Bill and I were alone in my hospice room. I asked him to lie down with me in my tiny hospital bed. Fortunately we are both small enough to fit into it together. I played the CD as we lay together and cried. "We've had an amazing life together," I observed. "I have loved every single minute of it," he responded. While I am pretty sure that he did not enjoy the time I tapped him less than gently on the head with the phone (not hard, just enough to let him know he was really pushing me to the brink), I think he was mostly sincere.

"After all these years, I still don't know why you stayed. You knew it would end this way."

"It was too late, I had already fallen love with you. I couldn't leave."

We were silent for awhile. I was basking in his words, running the sentence over and over again in my mind, thinking about how lucky I am that this man followed his heart and not his head.

"We were such a good pair," I whispered. And we were (are). Bill and I complemented each in other in nearly every way. What I lacked, he had in spades and vice versa. I literally cannot imagine being with anyone else but Bill; he is so much a part of me now. And I feel so sorry for him because I know he feels the same way and he has to let me go. I ached for the loneliness he will feel when there is no one there to understand all the inside jokes. No one will else will laugh when he drives by a beautifully landscaped house and he proclaims, "They must be nice people."

I kissed his wavy mane of hair. He's such a good man: loyal and steadfast, loving and dependable, witty and affable. He will find someone new to love. I truly want that for him, but laying in my hospital bed with him as we inched closer to the end of my life I finally felt the very natural sadness that comes with the realization that someone will take my place at Bill's side. He will share the remainder of his life with another woman who will run her hands through his wavy hair, keep him from getting lost, and act as tour guide on trips to foreign lands. And I felt a little angry about this other woman who is already out there, waiting for her cue to enter this tale. I let go of the anger though because, above all, I want him to be happy.

Laying there together in the narrow bed, listening the the soundtrack of our life was bittersweet. I tried to concentrate on the sweetness: Bill's unconditional love and devotion, the feel of his thick hair, the gentle caress of his hand against my arm. I had an urge to cradle him like a baby and let him sob because I know that he is afraid of the pain the will come when I pass away. I wanted to rock him and tell him, "It'll be ok. You will find love again. It won't hurt forever." But these are expressions of hope not truths. And, yet, I believe them, especially for Bill.

Spiritual Journey

2008-10-03T17:17:00.004-04:00

I have been reading a book called When Things Fall Apart by Pema Chondron for well over a week. I usually devour books at a much quicker rate that that, but this one is proving difficult to get through. I'm not sure if it's just too deep for me or if I am just on way too many drugs these days to follow anyone's thought processes. But I like it so I am trying to stick with it.

One of the quotes in the book struck a powerful cord in me, "The spiritual journey is not about heaven and getting to a place that is really swell." I have always had a similar belief that each of us is called to be the most decent, honest, and loving person that we can be and that the journey toward becoming that person in of itself is an ethereal journey. Unfortunately, the journey makes no promises about one's ultimate destination or state of affairs. We want good things to happen to deserving people and bad things to befall those who are evil. Perhaps we cling to notions of heaven and hell because it tidies up something that is really a rather large mess: making sense of our existence on this planet where disparities in wealth, resources, love, food, basic sanitation, water, and a myraid other needs are so wide and deep. At times I have clung to the notion of heaven and hell just to have the hope that everyone ultimately receives their just rewards.

Over years of my illness, and especially over the last year, I have been aware of the journey that I am on. Looking back I realize how much I have learned about myself, my loved ones, marriage, motherhood, faith, friendship, and love. It has been an extraordinally difficult journey and I have wished it away many times, but I am grateful for it nonetheless. I feel as though I grasped some important truths during these past months that had previously eluded me. The irony is that I will not have a chance to use them.

I realize now that the entire journey -- birth though death and everything in between -- is worth the struggles regardless of the existence of heaven. I have reaped my rewards here. I loved life fully and I have no regrets.

But I still want there to be a heaven because I want to see my loved one again and want to meet my "cyber"friends who have cheered me on. And I'd like to think that all the people who had little in this life will be fulfilled in the next.

Confessions of a Former Nurse

2008-10-02T10:38:00.004-04:00

I often wonder what doctors think about while sitting on their swivel chairs across from me. Do I frighten them? I am their peer: young, educated, a successful academic, a mother, a wife. I’m not one of “those people,” who drank, smoked, ate poorly, etc. If it could happen to me, it could happen to them. Do I remind them that they are not immune to disease and death by virtue of their academic pedigrees and thick wallets?

Or do I remind them of their impotence? They cannot cure or even control my disease. For certain scleroderma-related problems, like renal crisis and pulmonary hypertension, doctors can offer patients life saving treatments. But for many of scleroderma’s manifestations, there is little doctors can due to ease diseased-associated pain or organ malfunction. And I happen to be one of those patients for whom no useful treatments are available. Along with me, my doctors are often simply waiting to see what course my disease will follow: fast and furious or slow and steady.

But they aren’t impotent. Yes, I am going to die long before I become eligible for AARP membership. For years, my body fell apart little by little. My doctors monitored my disease progression, tweaked medicines to make me more comfortable, and stood at the ready to pull out their arsenal of “big guns” when if I should ever decide that I was desperate enough to try anything. The “good” doctors knew me as a person – a professor fond of teaching and research, a wife, a mother of two young children, an amateur chef and seamstress, a gardener—and, by doing so the gained my trust. To the “so-so” doctors I was just another patient in a long line of many. One refused to call me by my first name despite my repeated requests. I remained “Dr. Mayer” to him until I decided I needed to be on a first name basis with my doctor.

I suppose that health care providers find it difficult to establish personal relationships. Keeping emotional distance makes it easier to bear the inevitability of patient’s demise, especially in life-threatening diseases like scleroderma. Some doctors think it is unprofessional. Others buy into the idea that “Doctors Cure; Nurses Care,” absolving themselves of their duty to their patient, the patients illness, and how it effects their lives.

The inpatient hospice is a small 6-bed facility, which allows patients and staff time to get to know each other a little on this important last leg of life’s journey. Nearly everyday I have a five to ten minute conversation with one of my nurses and learn a little bit about them. They listen to my fears, they offer reassurance, and they share their experiences of helping people through the dying process. They cradle me and kiss my hair, they sit on my bed and talk, they see my as a person, not a patient.

My worst hours are between midnight and two when a nurse named Mary is usually on duty. I awake sometime during those hours drenched in sweat and shivering from head to toe. An angelic figure appearing out of the dark, she dries me off and changes my linens and puts me back to sleep. “You are so caring, Mary,” I told her one night. “You are easy to love,” she answered, “I pray for you every day.”

I used to be a nurse. I was attracted to the field because I was social and, honestly, young girls in Northeast Philly didn’t set their career ambitions too high. Surrounded by so many loving nurses here, I have started t think back to my nursing days. Sometimes I wonder if I was a bad provider. Did I dismiss my patients concerns? Was I rude and uncaring? Was I indifferent to their suffering?

When I was in nursing school, I worked on an adult medical unit. Most of our patients were receiving chemotherapy or early victims of the AIDS epidemic. I spent most of my shifts dressing bedsores that developed from the combination of being chronically ill and bedridden. I can only assume the sores where incredibly painful though most of these patents had grown used to the unrelenting consequences of their disease. I do not recall ever having a patient cry out during a dressing change.

I changed many dressings during that summer, but two patients stand out in my mind. On of them was a tall black man with metastatic cancer; he was thin, dark and tall like a Masaii warrior. When I met him his was on the losing end of a devastating battle. I remember walking into the dimly lit room and thinking that he seemed very sad and very far away. I told him my name and that I was there to change his dressing. As I unraveled the gauze I tried to focus on the task at hand. Having only worked for a couple of months, I was relatively new to doing dressing changes independently. And I secretly dreaded them. After I had removed all the gauze, I saw what remained of the man’s penis. The ulcers had consumed so much of the tissue that in parts, I could see the catheter tubing peeking through the remaining areas of healthy skin. “No wonder he is so sad,” I thought. How horrible to suffer in this way, to lose your dignity as you lose your life. I recall that I changed his dressing in silence and said good-bye.

Another night I was assigned a breast cancer victim in her early 30s. I had developed the habit of reading patients charts, especially their patient histories. I didn’t know what the field of public health was yet, but looking back, I realize that I had been fascinated by epidemiology, the study of diseases in populations. With all my patients I wanted to see if there was some clue to how they arrived at their unfortunate destination. Reading the women’s chart I felt frustrated. She was a healthy aerobics instructor with absolutely no risk factors. She was a model of clean living. “How could that be?” I thought naively, “There has to be a reason.”

I entered her room and greeted her. I’m sure I told her that I was there to dress her wounds and prepared my supplies. When I lifted her gown I was surprised to find that the bandages covered her entire chest. I removed the bandages while the patient lay there quietly. When I reached the final layer, I discovered that the woman’s entire chest wall was covered with tumors. It looked like mushrooms were growing out of her skin. I was shocked and went through the motions of changing the bandages without uttering a word. I felt certain that if I opened my mouth I would not be able to control my emotions. She lay there throughout the dressing change stoic and distant.

I think of those two patients now and then. They must have felt so alone in that room with me as I changed their dressings like some mindless robot. I was trying to be professional; I knew the last thing these patient’s need was to comfort a young nurse. Now I think to my self, “Would it have been so bad to cry?” or to say, “This is not fair.” I wish that I had had the maturity and strength to look these patient’s in the eye, hold their hands and say, “I’m sorry for what you are going through.” I wish I had pulled up a chair and given them the opportunity to share their grief and anger and sadness. But I was too young and stupid and naïve to know how awful it is to be sick and suffering and facing your mortality. I try and remember that when I experience the callousness of providers. I try to remind myself that they don’t understand or know what to say, so they say nothing. Just like I did 16 years ago.

Now on the receiving end of care I realize the healing power of a good nurse. I wish I had see it back in my younger days and used it more effectively.

After experiencing a good week of cough control without nausea, the nausea is back full force. This has always been the pattern a one-week honeymoon on narcotics followed by a week in bed with crippling abdominal pain. I now need help to walk from the bed to the bathroom and I am gasping for breath when I return to bed. I am being to accept that this is a battle that I cannot win.

Perhaps some will think less of my or consider me a quitter, but I can suffer no longer. Today we are going to discuss a plan for slowly backing off the TPN. Eventually we will get to a point where we hydrate for comfort purposes and wait for me to slip away.

I’m tired everyone. I have fought a long and hard fight, but I need a graceful exit strategy now. Of course my heart is broken and my dreams are shattered but I feel in my heart that the most loving thing to do is set myself, Bill, and the kids free. I have to follow my heart.

Rituals

2008-10-01T12:42:00.007-04:00

Photo taken Halloween 2007

When I was a child my mother built several rituals into our lives that I still recall with great fondness. One of them was making hot chocolate (from scratch) on winter days. My brothers and I would come in through the front door and immediately remove all our snow-covered outerwear and boots and strip down to the driest layer. If necessary, a change of clothes was waiting nearby. We were anxious to disrobe, tantalized by the smell emanating from the kitchen. We'd rush to the kitchen and watch as my mom skimmed the top layer off the chocolate and then pour each of us a mug. Nothing before or after tasted so much of love.

My mother also recognized every holiday with a treat. It didn't matter how small the holiday -- though she did not observe President's Day, Yom Kippur and other Jewish holidays, or any other religious holidays outside of Christian ones -- a special treat always awaited us at home. Sometimes it was homemade cupcakes with a jellied rabbit candy atop and other times it was a treat from the bakery. I still remember anticipating the treat that awaited me after school on any given holiday.

Like my mother before me, I established my own traditions with my family. Every year Bill and the kids designed a gingerbread house on graph paper while I made the dough. We baked the pieces, and over several nights we assembled the house. As the children grew older I let them oversee the decoration, resisting my urge it make it perfect. I marveled at their creativity as they rifled through the pantry to find ways to embellish their masterpiece. We also had a ritual at Halloween that involved a trip to JoAnn fabrics to pick out their costume pattern and the material. I then spent several weeks preparing for the big night. And I was easily as happy as they were to see the finished product. This year is the first year that I will not be able to do that; fortunately, they chose costumes for which we already had all the necessary parts: Aidan will be Yoda and Amelia plans to be a horse rider. They were very mature about letting this ritual go, making me realize that the ritual was probably all about me all along.

Of all our many rituals, two are sacred. Every night before they go off to sleep I sing them the lullabies that I have sung to them since they were infants. For the first couple years, I held them and rocked them while I sang. Then, I sat on their beds and rubbed their backs as I sang their songs. As my cough worsened, there were nights when they sang the songs instead of me. And, now, they often come to my room for their lullabies if I am too tired to come to their rooms. At some point I need to record myself singing them so that they will have them though the quality of my singing now leaves much to be desired. The second sacred ritual is Friday night movie night. We always made homemade regular and caramel corn and settled down to a movie. Afterwards we had our family "sleep over," in which the kids slept in their sleeping bag on our bedroom floor. The movie part is getting tricky because Amelia's and Aidan's tastes are diverging so who knows how much longer this will last. Sometimes we split up for the movie and reunite for "sleep over."

All this thinking about ritual brought me around to birth and death. When a woman is expecting, there are a number of rituals that anticipate and celebrate the blessed event of birth: picking a nursery theme, having a baby shower, washing the newborn clothing, taking childbirth classes, and preparing the nursery. By the time the baby has arrived, mama is as ready as she is ever going to be (no one is ever truly ready for the life changing event, are they?).

And now I find myself entering the last phase of my life and there are no rituals for the dying. I'm just sort of "winging it." We hosted a healing ceremony in April that was beautiful. Many friends and family members attended the service that my friend Kevin presided over. The weather seemed apropos with a gray sky and the blossoms of our cherry tree raining down all around us. Everyone anointed me with chrism, sacred oil used in Catholic sacraments. In some ways the healing ceremony was my way of "coming out" and admitting to everyone that I held dear that I was very sick and entering the final phase of my life. It was my way of inviting them into this journey and asking them to walk it with me in the ways that they were able. It was the beginning of my long good-bye.

The idea for the birthday gifts for the kids came from my friend Susan who once heard about someone else doing that. It seemed like a grand idea. The journals I kept for the kids were written for the very purpose of serving as my memory of them should I die before they became parents themselves. The CDs were a fleeting thought that really caught my attention and became an enjoyable activity. And the video was the brainchild and gift of a friend. During my many hours alone I try to think about what I would want to have of my mother, and I pick through ideas like shells on the beach, selecting the perfect ones and leaving others behind.

I wonder why we have no rituals surrounding death that involve the dying person. We Catholics have Last Rites (which has been renamed but I cannot remember the new name), but beyond that I am not aware of any cultural rituals for the dying. Tim McGraw suggested skydiving and Rocky Mountain climbing but I am not quite up for that physically. Is death just too individual to come up with a selection of rituals or are we so afraid of death that we elect to deny the reality of it? I'm not sure.

I don't know whether it's my OCD or control freak tendencies, but I have intense need to say good-bye on my terms. I wrote a good-bye letter to be read at my funeral; I wrote it at least three years ago "just in case." I told Bill where it was and emailed it to four trusted friends. I planned the slideshow and the accompanying music that I want played at the funeral. I've decided to be cremated and where I want my ashes interred. At first Bill and I worried that the kids would be upset by the idea of me being cremated but it's what I really want and I need to honor that.

After all, dying is my chance to say good-bye too. It is my opportunity to show others that I loved them and had a richer life for knowing them. And I don't want to let that opportunity pass me by.

Hospice Update

2008-09-30T18:10:00.003-04:00

Hi everyone,

Thought I'd just give you an update on my situation. I am still at the inpatient hospice facility. I perked up a lot after the first few days then I started a backwards slide. I have been having night sweats and last night I almost felt delirious. My temperature was normal at that time but it now stands at 100.2. So, I've caught something.

We have figured out a lot so far. I was on 2L of oxygen but on Sunday I had the bright idea to bring along a portable pulse oximeter (measures the oxygen levels in you blood stream on a walk outside). Bill, the kids, my brother Mark and his wife Cindy all set out for the slowest walk ever. We noticed quickly that my saturation levels fell to the low 80s very quickly. Tricky Bill increased my oxygen from 2L to 4L and, lo and behold, my oxygenation increased to the low 90s. So now we know I need 4L on exertion. I can take the walks (about .2 miles). They are exhausting, but I need to do them so my joints won't ache so much and to counteract the tightening of the skin in my legs.

It almost seems like I am going through the first few years of the disease all over again: the itchy skin, joint pain, night sweats, etc all bothered me during the early years but resolved. And, now, they are back full force.

We are still messing with the cardiac medications so that we can get me to a more normal resting heart rate. The Fentanyl PCA pump (24 hours of continuous Fentanyl with a patient bolus allowed every 15 minutes) is helping with the cough. So we are making progress. Hopefully the fever will be short lived.

Bill tells me I have had lots of typos lately. I tried to fix the last two post, but I have the excuse of being doped up at all times.

Michelle

Mindreaders

2008-09-29T19:56:00.002-04:00

Originally written in 2005

A few years ago Amelia was invited to a birthday part at Fuddruckers. One of the other party guests was a boy with severe cerebral palsy. “How did you like kindergarten this year Pete?” I asked the little boy sitting in the wheelchair, body contorted from some hypoxic accident long ago. “Oh, he loved it!” gushed his doting mother, “The teachers and the kids just took wonderful care of him, and he was so happy.” I had never met Pete and his mother before this chance meeting at a 6-year old birthday party. In our brief encounter, I watched her as she instructed the waiter how to puree his food, fed Pete, and changed his diaper. Pete, wheelchair bound and unable to coordinate his movements, required the constant attention of his mother. And she lavished it upon him lovingly without the slightest hint of regret or frustration. I felt so humbled as patience is not one of my virtues.

There was something about Pete that made him seem like he was trapped inside his body. Unable to speak, he still seemed to communicate with an occasional frown or attempt at eye contact. It seemed natural to speak to him, although he was completely unable to answer me. Whenever I asked him a question, his mother responded for him. When I asked about his feelings about school or summer camp, his mother responded much like I do when asked similar questions about my own children, citing his likes and dislikes. Part of me wondered, “How does she know?” It seemed like it would be so hard to discern what was happening in Pete’s brain.

Thoughts of Pete were not quick to dissipate from my mind after we ate our cake and bid each other good-bye. I kept wondering how his mother knew what Pete needed and wanted, liked and disliked. Picking beans in of my garden the next afternoon it hit me: from infancy through adolescence, mothers read their children’s minds. Our indoctrination into this world of intuiting our children’s needs begins when we learn which cry signals hunger and which calls out for comfort and affection. Even when words appear from the mouths of our children, we possess the singular ability to understand our children’s unique language. “Ju Ju,” my first-born cried and only I knew to hold her. Like most mothers, I spent months translating for Amelia. Children’s mastery of language does not, however, carry with it a mastery of emotion. We eventually also learn to interpret behaviors, non-verbal cues, and facial expressions to predict the beginning of a meltdown or anticipate the unspoken needs of a preschooler. For my feisty younger child, I needed to become skilled at predicting when he was overstimulated, tired, or hungry lest he decompensate into one of his angry and aggressive outbursts. On some days, I knew as soon as he awoke that that it was going to be “one of those days” long before he said a word.

I stood in my garden amidst the shoulder high bean plants wondering, when does the mindreading end? I had visions of adolescent versions of my children slamming doors and sulking while their father and I stood by oblivious to the root of their angst. I pictured myself crouched by their beds, coaxing them with an innocent, “You seem upset? I’d like to hear about it.” And I hoped that when that day comes, they’d trust me enough to let me in.

Sure, I can be mind reader enough to know something is wrong, but will I be good enough to know the cause of their distress before they divulge the truth? Then, I thought about my mother. I’m 36 and she still knows when something is wrong with me. Even 400 miles of distance have not dampened her ability to detect the need for a well-timed, “What’s wrong?”

While Pete’s mother certainly has a unique mothering experience relative to those of us whose children do not face so many challenges, I realized that her experience of reading her child’s mind was really a universal one. But she will likely master it long before most.

Carbon Footprint

2008-09-28T15:33:00.005-04:00

Bill’s dad loves the dump. Every time Bill’s parents visit, Bill’s dad is anxious to make a pilgrimage to the Orange County Landfill. Before Bill’s folks arrived last week, Bill and I placed bets on how long it would take for Bill’s dad to bring up the dump.

When they arrived, Bill’s parents came up to my room to see me. Kathy, Bill’s mother then shuffled off to prepare lunch and Bill’s dad remained with me. “It looks like you have a lot of branches in the yard,” he remarked, referring to what remained of the tree that we lost on Independence Day. “I think Bill and I should get up early tomorrow and rent a trunk from Home Dept and bring all that stuff to the dump.” I believe it was the second or third sentence out of his mouth; I think it was a new record.

While Bill’s dad has done his part in contributing to his local landfill as well as ours, my mother has been working for years on creating enough trash to merit her own memorial landfill. During the Wall-E movie I half expected to see her name inscribed on one of the trash piles.

My mother has an enduring love affair with plastic wrap. Every morning my mother stood at the kitchen counter in a flowered housecoat and slippers surrounded by bags, lunch meat , condiments, fruit, etc. My mom made our school lunches every morning because, “there is nothing worse than a soggy sandwich that has been sitting all night” I completely agree with her on this. While we ate our breakfast, invariably one of us would shout an accusatory and disgruntled, “he’s lookin’ at me.” Once those words were spoken, silence was imposed on breakfast. In addition, my mother placed a cereal box in front of our each of our faces so we could not annoy each other using non-verbal approaches.. When I think about how hard it is to get two kids out the door, I marvel at my mother, “How did she do it?” I’ll never know (although I suspect the threat/use of corporal punishment played a large role).

When mom made our school lunches, everything was wrapped in plastic wrap or sealed in a plastic bag, including fruit. “Ma,” I would argue, “I don’t think you need to wrap the apple. Nature already did that.” Her reasoning was that as the apple warmed up the resulting condensation would endanger the integrity of the brown paper lunch bag. I guess I should have suggested that apples sit in a bowl at room temperature rather than in the refrigerator, but I knew my suggestion would fall flat and never be adopted into the our household’s “Rules and Regulation,” sort of like a bill being stuck in committee (See School House Rock, “I’m Just a Bill.” It’s how I learned about the legislative process, and I suspect that I am not the only one who relies on those short ditties to remember all sorts of interesting and important information.) She applied the same condensation rationale to our Tastykakes (Philly’s much better version of Little Debbie cakes). Our sandwiches were also put in baggies even though they were already wrapped in plastic wrap.

At a minimum, our lunches contained a sandwich, a piece of fruit, a Tastykake package, which included two identical treats (e.g., cupcakes, etc). Usually she also included chips of some kind and/or some candy for good measure. As my brothers entered their teens, they graduated to two sandwiches each. My mom would then place each humongous lunch in not one but two brown paper bags. The bag was always too full to allow her to fold the top over so she stapled the top sides together. If it was raining, the lunch was then put in a large plastic bag to protect it from the elements.

I’m sure my brothers ate their entire lunch, but there was no way I was going to make my way through that much food in less than 45 minutes. So I just redistributed the wealth. The first thing to get rid of was the excess meat from my sandwich. Despite repeated efforts to convince my mother to give me only one slice, she refused, “People will think I don’t feed you. Clearly my mother did not consider the possibility that my lunch bag, ready to pop at the seams, made it incredibly clear that no one in our household ever went hungry. It’s a good thing we were born with high metabolic rates. Marie usually ate my oranges because I prefer the juiced version. A set of pencil-thin twins usually devoured any other rejects.

My mom’s plastic wrap addiction is legendary beyond school cafeterias. Every year she makes trays of homemade cookies for friends and family. They are artistically arranged in a pyramid shape and the cookies are carefully interspersed so that each cookie is flanked by a different variety. Once the arrangement was complete, she began entombing the delectable and artistic food sculpture. I swear she went through one quarter of the roll for each tray. A friend of the family, a woman with a strong build and an often witty but uncensored tongue always jokes when my mother gives her the tray, mumbling things like, ‘It’ll take me to New Year’s to open this up."

Once I developed a conscience about the environment, I tried to make small changes in my lifestyle that would reduce my carbon footprint. Our household has hardly “gone green,” but I am trying to reduce, reuse, and recycle and to teach the children to do the same. Going of the grid or taking public transportation are not among my options these days. So I settled on doing little things to help in a small way. For example, with only two kids I reasoned that we did not needed a minivan and our little wagon serves us well. We do other quirky things: we wash and reuse gallon size Ziploc bags, we composte, and we support local farms through a CSA program (and the vegetables are so much better!!). After living in France and noticing that people often wore the same out fit two days in a row, I decided to bring the practice home with me. So now try to wear my clothes several times between washings (yes, this sometimes results in BO so it’s important to sniff the shirt frat boy style before donning it). And I try to ask myself when I make a purchase, “Can you live without it? Do your really need another pair of shoes?” Of course it is easier now to eschew random purchases for clothing because I have a lot and don’t really go anywhere anyway. For her 8th birthday, Amelia asked for donations to Heifer International instead of gifts (I was SOOOO proud of her). But all our small efforts never seem like enough.

Last winter NC was in the thick of a severe drought. We adopted the “If it’s yellow let it mellow; if it’s brown flush it down” policy in an effort to conserve water. Then a friend mentioned to me that you could use shower water to flush the toilets. I was fascinated: I never knew that if you poured enough water into a toilet it would flush on its own. So, I headed out to Home Depot and bought several buckets. I placed buckets in each tub and we began to collect shower water and use it to flush the toilets. I felt very proud of the fact that we were doing our part. Never mind that I was lifting incredibly heavy buckets with my two scrawny arms and out of breath afterwards. I really am a stupidly stubborn person.

We did this for several weeks when I mentioned my new daily toilet flushing ritual to my friend Kathryn. Kathryn has been saving bathwater to water her plants forever and I really admired her for doing this. Kathryn gently told me that perhaps someone on chemo could be excused from water conservation efforts. I felt like a penitent being given absolution and relief. It was the best confession ever

So I decide to “pay it forward.” Ordinarily, I collect the compost but Bill brings it to the bin because I cannot open the lid. He abhors this task. If I ever make a CD of all our fights (because we have the same ten arguments over and over and putting them on CD would save us the energy of actually having the argument; we could listen instead.), the compost bin argument would definitely make the cut. I nagged him incessantly about it, especially when it attracted fruit flies. He gave me his canned, “I’ll take care of it” response that really means, “Shut up. You are annoying me.” But after my talk with Kathryn I finally understood that our family needed to focus our energies on the important things: healing our broken and anxious hearts, making memories to last a lifetime, loving each other, and living while there is still breath.

For our family in this moment the compost ritual had to go. One night I dumped the contents of the compost bin into the trash and washed it. I told Bill that he was off the hook for the compost, “You are already juggling too many things. I think we can let the compost go for now.” His relief was palpable; I could her him sigh softly. I guess it was the first time that he realized that I did recognize his plight, his burden, his grief, his fears. I had felt these things all along and tried in small ways to convey my appreciation and lighten the load, but I think he needed to see concrete evidence to accept that I understood that he is just a man doing his very best to be everything for every one.

Unfortunately the carbon footprint of our household has grown exponentially, but it has nothing to do with terminating our compost efforts. Our home now looks like a medical supplies store: bags, cans, batteries (we go through 2D batteries every other day), flushes, syringes, dressing change kits and so much more. Our weekly garbage has increased by at least one-third. After all those years of teasing my poor mother, I may end up with a much larger landfill bearing my name.

For a while I felt guilty about my Sasquatch-sized carbon footprint, but then I realized I will not spend 80 years making trash. Perhaps it will even out; I may not have such a big footprint after all.

Hillsborough, NC

2008-09-26T11:40:00.003-04:00

I realized recently that for Bill and me Hillsborough is a sacred place. Of course, I only see that now as I reflect on the life we have shared. It seems like any other place, but it is here that Bill and I have made commitments and crossed thresholds into deeper phases of our shared life.

Hillsborough is a small, quaint, historical town due north of Chapel Hill. While the main streets of many small towns across America have fallen victim to the successes of big box stores and strip malls, Hillsborough has somehow managed to keep its small downtown thriving with used book stores, antique shops, and family owned restaurants like the Cajun-themed Tupelo’s. It boasts a number of historic homes and sites and makes for a lovely day trip.

I first became acquainted with Hillsborough during my cycling days. I started cycling in college, but cycling in Philadelphia was akin to having death wish. In Philly, I usually road along the Schuylkill River, which was dense with cars traveling at high speeds. It’s a wonder that my Schwinn and I survived.

When I arrived in North Carolina, I mourned the loss of big city life. The only thing that saved my sanity was the ability to cycle safely amid beautiful landscapes mere moments from my dorm. I had a southern route to Pittsboro, a western route to nowhere and a northern route to Hillsborough. I spent many a happy hour on my bike, passing by farms and their cows. Drivers graciously shared the road without feeling the need to flip me the bird or call me names that even a cuss-lovin’ gal like me won’t utter. I liked cycling here so much that spring semesters I routinely cut classes; I just couldn’t resist a long ride on one of those first warm days.

Bill and I met in early September and our courtship was rather fast and furious. I joke that we were married by our second date, which isn’t much of an exaggeration. With Christmas coming, I wanted to do something special. I drove up to Hillsborough to tour a bed and breakfast that I had seen on previous trips. The inn, the Hillsborough House, was built in 1797. The colonial building included a wide porch complete with rocking chairs and ceiling fans, in typically inviting Southern fashion. The innkeeper gave me a lovely tour and I was struck by the fabulously decorated family room with its black walls and bold artwork. After touring all the bedrooms, I settled on Miss Annie’s room and made a reservation for the first weekend in December.

I suppose it seems silly to “travel” to an inn 12 miles from one’s house, but what the trip lacked in geographic distance it more than made up for with change in scenery. We treated ourselves to a fine dinner, something not normally part of our graduate students lives. After dinner, we returned to the hotel and climbed into the bed and snuggled together amidst all those cozy white pillows, comforters, blankets. We had one of those blissful sleeps that feels like a pure indulgence rather than a bodily necessity.

The next morning we woke and enjoyed a lovely breakfast. We walked around the town and looked at all the charming old houses. Afterwards we went to the used bookstore and indulged ourselves with a few purchases. We spent the afternoon reading in bed and napping like two satiated kittens. We shared another dinner that was memorable for the fact that the restaurant actually offered a diary free apple crisp, and I was so happy because I never get to eat dessert at a restaurant.

Regrettably the weekend had to end. We awoke the next day and packed our bags before heading down to breakfast. I remember that there was a glazed cake on the table, which struck me as a rather decadent breakfast treat. After we checked out and loaded up the car, we climbed into the porch swing. We sat there for quite a while, holding hands. We said very little for there wasn’t much to say. We had fallen in love; there was little point in stating the obvious.

One day in July Bill and I were out looking for a coffee table. As you may recall our first attempt to buy a coffee table turned into dog ownership. And Watson wasn’t working out well as a cup holder. Off we went to the Hillsborough antique stores only to come up empty once again. As we stood outside our car, Bill eyed an estate jewelry store, “Should be go in?” I knew there was no turning back, “Sure.” I tried on rings and was especially fond on one with the diamond in a fishtail setting. We were altar bound; all that remained was the formal proposal.

One Saturday night we were supposedly meeting our friends Marc and Rachel at a new restaurant in Durham. Bill blindfolded me when I got into the car. I have a very god sense of direction and tried desperately to follow Bill’s turns. “We are not going to Durham,” I teased, “I know we are on a highway.” But I couldn’t figure out where we were headed. When the car came to a stop Bill took off the blindfold, and my eyes filled with tears. We were standing in front of the kitchen house suite of the Hillsborough House. Had I planned my own engagement, this was the very site I would have chosen.

Inside the kitchen house was the rocking chair Bill and I had refinished together. The room had a corner fireplace and a lovely bed with posts fashioned from braches that had been bent to meet and form a canopy that was filled with Christmas lights. A silver bucket held a bottle of champagne, water condensing along the sides, and a vase of flowers adorned the bedside table.

Bill sat me down on the rocking chair and posed on one knee. He told me how happy I had made him and how much he wanted to spend his life with me. I said “yes” through my tears and he slipped the ring onto my cold, blue finger. I had been sick for about 6 weeks; he knew exactly what he was doing and did it anyway.

It seems like Bill and I return again and again to Hillsborough when there is need to commit ourselves to each other. It has never been a conscious choice; it merely seems to have happened this way. The Hospice facility and the Unicorn Bereavement Center, where we all go for counseling, are located in Hillsborough. For all our other commitments Bill and I walked side-by-side, but on this occasion, I have been a few steps ahead for quite some time. Last Saturday, after another coughing fit I lay on the floor, “It’s time for me to go, Bill.” “I know honey; I see that now,” he replied, “We will call Hospice on Monday.” The inpatient admission was a surprise so once again Bill and I found ourselves in Hillsborough. And it is here that we have committed once again to each other: this time to walk this final leg of my journey, together. And the bitter irony is that we have to become closer than ever so that ultimately we can let go. No one tells you how much you fall in love during the “Til death do us part phase.” No one tells you how much is spoken between your hearts in those silent and vulnerable moments. No one tells you how much it hurts to recommit your love knowing that you will leave or be left behind. But I wouldn’t trade it. The alternative – not caring – would be far worse.

Hallelujah for Hospice

2008-09-25T15:52:00.003-04:00

I've been sitting here all day waiting for today's essay to pop into my head. Usually it presents itself the night before while I am falling asleep. But I fell asleep quickly last night depriving my inner author of adequate time for cogitation.

I slept so soundly last night. It was one of those lovely, peaceful sleeps that are more often a part of my fantasy life than my reality. What a pleasant change to wake up refreshed. Perhaps my sleep center is not wired properly. My mother says the nurses applauded when I left the nursery because I stayed up all night long every night during my newborn stay. And I have had sleep issues, off and on, ever since.

So far the symptom management is going well. I am on a continuous pump of fentanyl (yes, it doesn't make me sleep or treat pain but we are using it for the cough). It is on a patient controlled anesthesia pump so I get a baseline amount and if a coughing fit starts, I can give myself a bolus. I took a shower today without having a coughing fit, which is a hopeful sign. Tomorrow Bill and I will take a walk and see how it goes. So far we have been able to avoid the nausea and vomiting side effects, but the itching is pretty severe. So that's the next item on the list of puzzles to solve.

Now that the edema has been treated, we are starting to wonder if the skin on my legs is tightening from the scleroderma. When I first developed the disease that skin was virtually unaffected. But suddenly, my thighs feel like they have turned to stone. What a greedy little disease.

The staff here is amazing. They spring into action at the first sign of a coughing fit and help me in every way possible. This is truly the most "caring" healthcare institution I have ever experienced. Surely hospice attracts a special type of person but I also think the shift in purpose from cure to care is essential in creating an environment where the patient's comfort is truly the central and unifying focal point. Perhaps it sounds like hyperbole but I feel like a child in the lap of a loving parent. I feel so completely and utterly at peace.

Birdfeeders

2008-09-24T15:27:00.002-04:00

Up north, spring was often a disappointing transition between winter and summer. Sometimes winter hovered through April, like a house guest overstaying her welcome. Frosts often damaged early blooms, and old winter coats too often obscured new Easter dresses. For me, spring only seemed like a season in theory. There were no flowering trees or special birds to announce the return of warm weather, just a gradually rising mercury and longer days that promised a reprieve from the grays of winter.

The first spring I lived in North Carolina I was struck by the beauty of the season. Beginning in early March the daffodils bloomed, heralding the arrival of spring. I guess the crocuses bloomed first, but I didn't notice them. Other perennials followed in succession: tulips, hyacinths, lilies, and on and on. Likewise the trees flowered in hues of cream and pink and purple with each tree taking it's turn at center stage. And then the birds came: cardinals, blue jays, golden finches, nuthatches, and bluebirds. Finally I understood why the Resurrection occupies its place on the calendar. That first spring the world around me seemed to birth and bloom and grow in a crescendo made for my eyes rather than my ears. I was an awe-struck city girl racing around campus with a camera in an effort to record an experience with nature unlike any I had ever known.

Years ago, whenever I would pick a paint color for a room, I would ask myself, "Would color do you want this room to be when you are dying?" I guess it shows how long I have been thinking about my death. Once scleroderma came into my life and accepted my mortality, there was no going back. My death became an everyday aspect of my life. I do not mean to say that I spent part of everyday in fetal position. Of course, there were many times when I did curl into a ball and cry inconsolably. And I often cried in the shower and the car and in other random, unpredictable places. But the awareness of my likely premature death yielded more than moments of catharsis.

I suppose that in some ways I became a more calculating person. I did may things purposefully, knowing that my remaining time was short. I abandoned any plans to seek an academic job with tenure. Deep in my heart I knew I did not want that life even if I was healthy. I liked to do too many other things that I feared that I would have to surrender to be a successful academic. And being sick gave me a justifiable reason for opting out of a career path that I did not want. The background noise of my mortality played into everything else in my life as well: the choice to have children; the determination to stay married; the documentation of my children's lives through journals, photos, and collections of their artwork; the desire to make life beautiful with gardens and parties and costumes and birthdays parties. In many ways, my illness has been my life's director, showing me how to play my part so that it was genuine and real. It taught me to listen to my heart rather than the brain that ruled my world during my healthy years.

I would sit in a room, puzzling over colors. I would picture myself relaxing in a chair or sofa, covered with a blanket. In my mind's eye I would see the future me staring out the window to the birdfeeders where I imagined beautiful feathered creatures converging for an afternoon snack. And I would try to imagine how it would feel to watch the birds while my life slipped away.

When we walked into my hospice room, the curtains were open to reveal a sliding glass door and a patio complete with a table and chairs. Nearby stood two birdfeeders and I felt immediate peace. I knew I was where I needed to be, resting and staring out the window at the birds just as I always imagined it.

This hospice room is cosy, with homemade quilts and blankets. My patio overlooks a bucolic setting. My heart, soul, and body are in the capable and loving hands of the staff and my symptoms are coming under control. We are making progress, but there is no rush or hurry. They want to see me comfortable before they let me go home to live out my remaining time. I truly believe that choosing hospice with not only improve the quality of my life but also the duration. If I can be comfortable instead of writhing in pain and coughing violently, I can nurture my will to live. I can still fight if I just don't have to fight so damn hard.

My Life in Pictures, Part I

2008-09-22T18:56:00.009-04:00

This is the nearly finished version of the slideshow I have been working on. Unfortunately the entire slideshow is too big to upload so this is just part I, pre-Bill and the kids. I hemmed and hawed about putting it on the web, especially since I didn't "ok" it with anyone featured. So, if you have an issue with your picture being posted, let me know and I will remove it. If anyone has brilliant ideas about posting the entire thing (It's 350.4 MB; I tried youtube and that failed as well), let me know.

There was something very cathartic about putting this together. It was a perversely pleasurable experience to look back on my life this way and gave me a sense of peace. Actually, I highly recommend this activity for anyone, if only to laugh at how you hairstyles and "fashion sense" have evolved over the years. I may make ones of each child and one of just Bill and me. For me, these activities are a great way to pass the time and to remind myself of what a wonderful ride this life has been and still is ...

I hope you enjoy it. I don't know if the music will play but the accompanying song should be What a Wonderful World (Louis Armstrong).

"The reports of my death ..."

2008-09-22T11:53:00.004-04:00

Mark Twain was once quoted as saying, "The reports of my death have been greatly exaggerated." I could empathize with the old chap this weekend when I opened up a card to Bill from a publishing company, assuming that it was junk mail. As it turns out it was from the publishing house with whom Bill is publishing a textbook this December. It was a condolence card filled with several hand written messages expressing sympathy over my passing. It turns out that Bill's co-author, a Frenchman, was not able to get his point across precisely. We had a good laugh over it.

Bill's parents and sister, Ann, were here all weekend. Bill's immediate family includes some of the most productive, hard working people I have ever met. No one ever sits down unless it is mealtime. The weekend was a whirlwind of shopping expeditions, pantry organizing, kitchen cleaning, picture framing and hanging (at my request), and many, many other tasks. When they left this morning the house was pristine and the photo collage I had been plotting for month was finally a reality in our family room. I was so happy.

I had to be honest with myself about the photo collage. I wanted it because I wanted Bill and the children to see what moments I had singled out to display from this wonderful life of ours. But, secretly, I think I was also marking my territory. The time will come when I am gone and Bill and the kids will need to move on. And I want them to do that, truly. But I want the person who fills my shoes to know that I was here first: I loved this man, I bore these children, I nursed, and rocked and reared and loved them. I don't want her to replace me; I want her to complement me. I want for her to allow me to exist in the memories and hearts of my children. Somehow hanging those pictures on the wall made me feel like I was staking my claim, though I know they can come done just as easily as they went up.

While the Steinbach's were busy in their usual way, I was busy as well. I lay in bed and prepared the slideshow that I want shown at my funeral. Marie had scanned in many photos for me from the pre-digital era and I added photos from recent years. I tried to put the photos in chronological order but it is not always easy to tell the two year old from the two and one-half year old. No matter. I set the slide show to music: Louis Armstrong's What a Wonderful World and Edwin McCain's I Could Not Ask for More. I suppose the latter seems like a strange choice for someone in my situation, but it reflects my true feelings. I have had a wonderful life, filled with a loving family, terrific friendships, an adoring husband, and two blessed children. I have enjoyed my time on this planet immensely. Even this weekend, as sick as I felt, I still made it to three soccer games and cheered the kids on sitting in my wheelchair and breathing through an oxygen cannula. Maybe the lines "every prayer has been answered" and "every dream I've had's come true" aren't exactly valid. But they are close enough. For whatever reason, I don't think I was destined for a long life.

Making the slideshow was bittersweet. I enjoyed reminiscing about the sweet moments of my life, but I wept over having to let it go when I feel like I could have done and enjoyed so much more.

I begin Hospice Care today. I will be admitted to the inpatient facility today or tomorrow so they can try to figure out my coughing, nausea/vomiting, and edema. Hopefully within two days we will be able to come up with a medication regimen that keeps me comfortable and I can return home. I don't know if I will have Internet access there but if I can post, I will.

Amy’s Answering Machine

2008-09-20T22:47:00.001-04:00

A friend of mine recently gave me a CD of the book “Amy’s Answering Machine.” For those of you unfamiliar with it, the CD includes 28 tracks that revolve around a message or series of messages left on one young New Yorker’s answering machine by her mother. I had read the book a few years ago, but the CD is needed to experience fully this particular work.

The author, Amy (Amilia) Borkowsky, must be an only child and her mother’s raison d’être because her mother clearly devotes much of her existence to worrying about how incredibly random and unlikely events could befall her daughter. More importantly, she appears to make every effort to use telephone messages to prevent such random events, such as her daughter being the victim of a gang-related crime while taking out the trash in her terry cloth robe, which happens to be red – a gang color.

Bill, Grace and I listened to the CD yesterday and I thought we were all going to wet our pants. Bill was literally doubled over during one track called “Lambskin Condoms.” My favorite one was titled ‘Where’s Amila?” and involved not only two messages to the daughter but also a half a dozen messages from Amila’s friends telling her that her mother called them at some ungodly hour trying to find her.

This was where I got sentimental for my own mother. Thankfully, my mother did not feel the need to call me and leave inane messages on my machine, but she did often call with some random news item that she thought might have some bearing on my life. “Where’s Amila?” really got to me because one summer I worked as a health economist for the World Bank. During that time, I was stationed mostly in Nairobi, Kenya. Calls home were expensive and I tried to keep them to a minimum. After not hearing from me for 5 days, my mother was in a panic. Surely I had been killed, kidnapped, or something similarly drastic. Armed with only two pieces of information – my name and my “home base” in Nairobi – she called the World Bank’s general number. Now I remind you, this was before the Internet was widely available. The woman was relying on 4-1-1. Somehow with these two snippets of information, she managed to get connected to my boss. Out of 8,000 people in the DC office, she found the right person. The woman has the tenacity of a pit-bull. After she finished with him I received word to “Call your mother.” I, of course, was teased about this relentlessly for the remainder of the project.

It could have been worse. My mother actually rejected most of the superstitious ways of her mother. My grandmother had a litany of behaviors that should have been avoided to ensure one’s safety. For example, photos of pregnant women were strictly forbidden. We have two of my mother and you cannot see her head in one of them; in both pictures she is in the background and captured on film purely be accident. When my pregnant mother was asked to stand as godmother for my cousin Steven, my grandmother nearly had a coronary. Apparently to be a godmother while pregnant was to invite harm to the child in your womb. “Ma,” my mother would reason with her, “Why would God do that? It makes no sense.” My mother stood for Steven; my grandmother was not happy.

My favorite of the many tales about my grandmother involves the “malocchio” and my eldest brother’s baby carriage. The malocchio is the evil eye. The Italian gesture associated with the evil eye involves holding your middle and ring fingers down with your thumb and pointing with your index and pinky fingers. Whenever my grandmother came to see my mother and Anthony, which was every day, she would check the stroller to make sure there was a pair of scissors under the cushion. You see, the points of the scissors make the malocchio ricochet back onto the evildoer. Apparently my mother always found the cushion moved after my grandmother’s visit. (As an aside my grandmother would leave my parents’ apartment if my mother let Anthony “cry it out.” She would get mad at my mom or not picking him up. She’d walk the two blocks home and call my mother, “Did you pick up that baby yet?” she’d ask in Italian. When my mother responded, “No,” my grandmother would yell, “Va fungool! [Fuck you]” and slam down the phone. My grandmother must have been a trip.)

My cousin Debbie gave the malocchio to someone at work once. A co-worker, an African American man, saw her and asked her what she was doing. Shortly thereafter Debbie's intended victim was fired. Her co-worker was then quoted as saying, “Don’t make Debbie angry. She’s got some evil fingers.”

I told Bill about the malocchio when we were dating and he had a field day with the concept. He used to walk around the apartment with his hands tucked into pockets like he was preparing to draw. Then he would pull them out in malocchio formation and start pointing at things. “Stop it,” I would cry even though I don’t really believe in the evil eye.

While my mother did not buy into the superstitions, she was really into Catholic voodoo. Selling a house? Gotta bury St. Joseph in the front yard. Getting married? Better put a statue of the Virgin in every window of the house to ensure good weather (Her proof that this works is that the Saturday we got married was the only Saturday in a 13-week period that it did not rain. It does not explain, however, why it rained on two of my three brother’s weddings). In my childhood home, we built Mary shrines for the month of May and had various statues of the Saints around the house. Even now, the St. Theresa statue my mother gave us is staring at me.

The most humiliating Catholic voodoo ritual occurred the summer after my senior year of high school. I had hoodwinked my parents into letting me go to the Jersey shore with my high school boyfriend, Tim, for a long weekend. This was an unimaginable feat in my parents’ house. To this day, I cannot believe I persuaded them to let me go. My approach was honest and straightforward. Before my dad came home from work, I approached my mother after dinner. I explained that I wanted to take the trip. I also told her that all my friends told me to lie about it and that I probably could have gotten away with doing that. But instead, I chose to be honest with her as a sign of my maturity. “We’ll talk about it when your dad gets home,” she replied. My dad was enjoying a mouthful of food when my mother blurted out, “Your daughter wants to spend the weekend at the shore with Tim, alone.” My father, literally, spit out his food. There was much debate and negotiation and in the end, I won. There were two conditions: 1) Tim and I had to sit through an embarrassing abstinence-only talk with my dad and 2) my mother would hold a blessing ritual before we left.

On the day of our departure, Tim, I, and the other couple going were made to kneel on my parents’ living room floor. My mom then proceeded to bless us with holy water and holy oil while murmuring prayers. We all had the sense to stare straight ahead lest my mother smack one of us. You can imagine the shit I caught for this. At least everyone else had a crazy Catholic mother as well, but theirs were of the Irish variant.

I’m glad Amy Borkowsky shared her mother with the world. I liked “meeting” her, and she made me grateful that my mother was downright boring in comparison.

The Sock Bag

2008-09-18T14:39:00.013-04:00

Sorry this is a double post b/c I cannot get today's to appear before yesterdays and "The Sock Bag" is not listed in my list tof posts ... weird. I don't do technology well.

When I was little, my parents kept a brown paper bag stashed behind a hideous orange chair in our basement (It was the 70s; everything was orange and avocado green). Each time my mom folded a load of laundry, she dropped any single socks into the bag in hopes that, eventually, its partner would show up. About once a month, one of us would get assigned sock bag duty. This involved dumping the contents of the bag on the floor, searching for matches, and marrying the wayward pairs.

Given my OCD-like qualities, it is no surprise that I have followed in my parents sock-bag footsteps. About once a month I empty the bag and look for matches. Bill looks at me crouched on our bedroom floor surrounded by socks and shakes his head. To him, this is a ridiculous waste of energy. I've tried to explain to him that each time I empty the sock bag I find at least 6 pairs. I paraphrase my freshman developmental psychology professor to show Bill that my behavior is perfectly rational because I am always rewarded for my efforts. He remains unimpressed.

Yesterday I was feeling downright spunky. Of course, these days spunky means I can walk around the upstairs without feeling like my heart is going to leap out of my chest. Grace (yes, she's here again surrounding us all with her love and, well, grace) and Ashley, our new nanny, were busy helping the kids clean their rooms. I needed something to occupy myself. I spied the sock bag sitting in the corner of my bedroom. I crossed the room and emptied the bag on the floor. I found about 9 matches immediately. It was going to be a good sock bag day. As I continued to sort through the socks I noticed a lot of them were socks that were recently purchased, "They can't be missing their partners already." Then I experienced a stroke of genius. I went to Bill's sock drawer and looked for single socks. Sure enough there were about 8 or 9. This shows a blatant disregard for laundry protocol, loose socks are supposed to go into the sock bag.

Then I pulled Aidan's sock drawer out of the chest and carried it to my room. That child has about 50 pairs of socks but refuses to wear them (He also refuses to wear underwear, going commando at all times). The child's feet and sneakers smell so badly I fear I may die from asphyxiation if I am ever left in a confined space with them. For awhile I kept buying different kinds of socks in an effort to find something acceptable to his tender feet, but the magical socks remain elusive. There were loads of single socks lurking in Aidan's drawer and, before long, I had over 2 dozen matches. The OCD center of my brain was deliriously happy.

Then I called Amelia, "Honey, go to your sock drawer and bring me all your single socks." She returned with another half dozen or so and I performed more sock marriages.

Last AND least was my drawer. I am proud to say that I had few single socks lurking there. At least I follow laundry protocol. I did eye a suspicious pair, however. They did not appear to be the same socks but they were married nonetheless. Now, I am a strong supporter of alternative lifestyles among humans (and may I ask, preemptively, please no comments about my illness being God's wrath because I support gay marriage. I am highly confident that God has better things to do then worry about my position on this issue. I am fragile; please no mean comments), but I will only tolerate sock marriages between identical socks. So I unpaired the socks and put them with their rightful partner.

At the end of all this I had over three dozens matches, an all time sock-bag record. I felt so victorious that I allowed myself to throw out the socks that have been in the bag for, literally, years without ever finding their partners. Of course, their matches will turn up next week, but I think I can cope with that.

I had no idea socks could make me so happy.

Fetal

2008-09-18T14:39:00.009-04:00

Ok, sorry folks, but I am going to torture you with another poem. The essay I intended to post for today is still gestating. That's how writing works for me sometimes. The theme, words, stories, etc. gestate on a back burner sometimes for days before they are ready.

I just gave up on trying to nap; I've never been a good daytime sleeper. This poem came to me and I decided it will have to do for today.

Painting courtesy of Ellen Joffe-Halpern, Williamstown, Massachusetts

Fetal

Fetal
Waiting for sleep
One foot cradled in the sole of its partner
An arm draped across another
Absently

Turning towards myself
Inward
For comfort

Inside small parts quake
Surrounding tissues swaddle
"There, there, you mustn't shake so.
There is no energy to spare
for fear"

The Sock Bag

2008-09-18T14:39:00.007-04:00

When I was little, my parents kept s brown paper bag stashed behind a hideous orange chair in our basement (It was the 70s; everything was orange and avocado green). Each time my mom folded a load of laundry, she dropped any single socks into the bag in hopes that, eventually, its partner would show up. About once a month, one of us would get assigned sock bag duty. This involved dumping the contents of the bag on the floor, searching for matches, and marrying the wayward pairs.

Given my OCD-like qualities, it is no surprise that I have followed in my parents sock-bag footsteps. About once a month I empty the bag and look for matches. Bill looks at me crouched on our bedroom floor surrounded by socks and shakes his head. To him, this is a ridiculous waste of energy. I've tried to explain to him that each time I empty the sick bag I find at least 6 pairs. I paraphrase by freshman developmental psychology professor to show Bill that my behavior is perfectly rationale because I am always rewarded for my efforts. He remains unimpressed.

Yesterday I was feeling downright spunky. Of course, these days spunky means I can walk around the upstairs without feeling like my heart is going to leap out of my chest. Grace (yes, she's here again surrounding us all with her love and, well, grace) and Ashley, our new nanny, were busy helping the kids clean their rooms. I needed something to occupy myself. I spied the sock bag sitting in the corner of my bedroom. I crossed the room and emptied the bag on the floor. I found about 9 matches immediately. It was going to be a good sock bag day. As I continued to sort through the socks I noticed a lot of them were socks that were recently purchased, "They can't be missing their partners already." Then I experienced a stroke of genius. I went to Bill's sock drawer and looked for single socks. Sure enough there were about 8 or 9. This shows a blatant disregard for laundry protocol, loose socks are supposed to go into the sock bag.

Then I pulled Aidan's sock drawer out of the chest and carried it to my room. That child has about 50 pairs of socks but refuses to wear them (He also refuses to wear underwear, going commando at all times). The child's feet and sneakers smell so badly I fear I may die from asphyxiation if I am ever left in a confined space with them. For awhile I kept buying different kinds of socks in an effort to find something acceptable to his tender feet, but the magical socks remain elusive. There were loads of single socks lurking in Aidan's drawer and, before long, I had over 2 dozen matches. The OCD center of my brain was deliriously happy.

Then I called Amelia, "Honey, go to your sock drawer and bring me all your single socks." She returned with another half dozen or so and I performed more sock marriages.

Last AND least was my drawer. I am proud to say that I had few single socks lurking there. At least I follow laundry protocol. I did eye a suspicious pair, however. They did not appear to be the same socks but they were married nonetheless. Now, I am a strong supporter of alternative lifestyles among humans (and may I ask, preemptively, please no comments about my illness being God's wrath because I support gay marriage. I am highly confident that God has better things to do then worry about my position on this issue. I am fragile; please no mean comments), but I will only tolerate sock marriages between identical socks. So I unpaired the socks and put them with their rightful partner.

At the end of all this I had over three dozens matches, an all time sock-bag record. I felt so victorious that I allowed myself to throw out the socks that have been in the bag for, literally, years without ever finding their partners. Of course, their matches will turn up next week, but I think I can cope with that.

I had no idea socks could make me so happy.

Read me a Story

2008-09-17T13:32:00.002-04:00

When I was in college I used to get severe menstrual cramps. Surprisingly, my college boyfriend understood my misery. His sister, just 15 months his junior, suffered from them as well. Each month he would break out the heating pad and the motrin and tenderly rub my stomach. On one particular month during our senior year I was in terrible pain. He decided to read aloud to me from Robert Fulghum's All I Needed to Know I Learned in Kindergarten. All my life I had been a voracious reader. I still remember lying on the double bed in my brothers' room as a small kindergarten student, reading aloud to my parents. Surely my parents read to me as a small child, but I have no memory of that precious experience.

Curled under my boyfriend's boring blue, likely Eddie Bauer, comforter, the words coming from his mouth felt like analgesia of the best kind. The content and the cadence lulled me into a peaceful place far away from my body's pain. I felt loved and cherished, a medicine in its own rite. It was a moment of healing.

Last night was Orientation Night at the school. I have never missed a school event despite the hellacious year I experienced this past year. As we got out of the car Amelia pointed to my oxygen tank, "We are't bringing that, are we?" I replied that I wanted to have it with me. "Then I'd rather not go," she cried out with tears streaming down my face. I guess the wheelchair is one thing but oxygen is quite another. She asks so little of me that I thought I could at least try. "Ok, honey, we'll leave it here."

The evening began with a spaghetti dinner and classroom orientations were scheduled to follow. As dinner was wrapping up my coughing began. It became clear that we needed to make a rapid exit. Bill discharged the kids to the car of other parents and assured them he'd return shortly. I managed to puke just after we exited the building. Fortunately we live only 0.5 miles from the school. Before long I was changed into clean clothes and resting in bed. Then Bill returned to the school.

When the children returned home, Bill reminded them to do their required 20 minutes of reading. Aidan entered my room, book in hand, to find me crying, "Why are you crying mommy?" "I just feel a little sad, honey," I replied wiping away my tears. "Please don't cry mommy. Please," he implored, crawling under the covers and snuggling against me. "I bet I would stop crying if you read to me," I suggested.

He opened his book on weather, the unit he is studying in second grade science. I am humbled by these science units because I realize how little I actually know. Was I not paying attention? Did they not bother to teach us the difference between a sirocco an a mistral? Did I elect to forget that material to make way for the lyrics, melodies, and harmonies of virtually every 70s song that hit the radio waves? Whatever the reason, I know almost nothing about weather. My knowledge is based solely on a glance out the window and temperature reports on the web. Beyond that I am completely ignorant, which explains why I never have an umbrella when I need one.

He read to me in his sweet voice about winds, hurricanes, and tornadoes. Little boys love destruction of all kinds, even "Acts of God." While he read I looked down at his freckles, especially the star-shaped one on the bridge of his nose, just slightly to the right. He seems to get more and more freckles with each passing year. It wasn't long ago that I used to read to him using my most dramatic voice. Reading children's stories was the remaining outlet for my inner actress that still missed her days in community theater. Back then Aidan had just a smattering of those adorable brown spots adorning his face. We read Eric Carle, Kevin Henkes (my very favorite), David Kirk, and David Shannon. Storytime and lullabies were the highlight of every day, at least they were for me. Night after night, we giggled on the floor of Amelia's room, nursing a love of reading that I hoped would last a lifetime. So far, so good.

After Aidan read to me, Amelia shared her American Girl catalog. I'm not a fan, but she loves her doll so I indulge her. She went through the catalog page by page, remarking on various items. A child of reasonable expectations and good financial sense, she commented on the relative costs of different items -- what she perceived as a bargain and what she thought was overpriced -- and set the stage nicely for her planned purchases. Crafty child, that one is.

I sang them their lullabies there in my bed so I wouldn't have to expend the energy to walk them to their rooms. As they went off to sleep I lay in bed and had my nightly debate: is this half hour of joy enough for me? Is it enough to endure the pain, vomiting, loneliness, etc. More importantly, is it enough for them? Once again I abandon the debate without finding a resolution.

Today my friend Susan came to visit and brought a magazine called Brain Child. She offered to read to me unsolicited. The essay was called Baby Weight and essentially told the tale of one woman's radical transformation from an independent 30-something to a doting mom. As she falls in love with her child, all her ridiculous preconceived notions of motherhood evaporating like a puddle on a hot August day, I recalled my own love affairs with these children of mine. I remembered my constant awe of Amelia, physically changing rapidly in every possible way but staying the same happy person she was born as. And I recalled wanting Aidan's infancy to last forever, nursing him on the sofa before we settled into our joint afternoon slumber. Somehow time slips away; there is always a new phase: another change, another challenge, another milestone, another magical moment.

And I guess that's why I keep choosing to stay, I cannot bear to miss what comes next.

What we choose to see

2008-09-16T13:19:00.002-04:00

I woke up this morning and the first thing I did was stumble out of bed in time to puke into a bucket I keep close at hand "just in case." It was clearly going to be one of those days. As the episode continued, I paged Bill repeatedly. Sometimes the pages just don't go through. Finally he called me back, "I am on my way." Bill took care of me until my friend Amy arrived. We chatted for a while and then she left me to rest while remaining in the house in case I needed her. I had to wonder to myself if we will soon enter the phase of the, "death watch," during which friends come and sit so that I am not alone. I hope we aren't there yet; I hope today is just a bad day.

Sunday night Amelia and I were watching "Little House on the Prairie" again. As we sat down together on the sofa, she reached out to touch my upper arm. "Your arms are getting so much bigger," she observed, grinning broadly and clapping her hands together. I didn't have the heart to tell her that some of the girth is edema nor the sad reality that my weight gain has not translated into an improvement in my lung function as we had hoped. I couldn't bear to tell her how desparately my heart is trying to compensate for the inadequacies of my lungs. Nor could I share my fears that my heart cannot compensate for much longer.

I wondered how my more robust physique is enough to override all the other signs of my growing debilitation: being on oxygen, needing a wheelchair, hiring a nanny to meet their bus and help prepare dinner. Does she choose not to see all the signs of my demise or is she merely holding fast to the belief that once I gain enough weight, all will return to normal? I worry that she is in denial and that she will be blindsided by my death. But I also don't want to force her to acknowledge a reality that she is clearly unready to face.

Aidan is the opposite. He sees his world going to hell and he's pissed. Two weeks ago during a fight with me he yelled, "I know you are dying; I just wish you would die sooner." The next day when we was calm and snuggly, I brought up his statement. "I know how you feel, Aidan. You know something terrible is going to happen and part of you just wants to get it over with. You needn't feel badly about feeling that way. I feel that way sometimes too," I confessed. "I just want you to die, but then I want you to come back better." I didn't realize that a part of him did not understand that my death was permanent, "Aidan when I die I am not coming back. At least not in this body. You won't be able to see me or touch me." He buried his little head in my lap and cried and cried. There was nothing else to do but hold him.

For BIll and I reality hit home in a real and final way on Friday. The results of the exercise test clearly showed that my heart and lungs are not functioning well, explaining my complete intolerance to activity. On Sunday Bill ad I talked again. "No more tests," I told him, "I am tired of suffering." Tears welled in Bill's eyes, "I love you too much to see you continue to suffer. I just want to make you as comfortable as possible so that you can enjoy your remaining time and we can make some more memories." We talked about moving into acceptance, together this time. It's an important first step.

I vaccillate between wanting more time to make more memories, to tuck the children in one more night, to cuddle with them on the sofa and read. There are days when this minimalist life is more than enough. And then there are days like today, which start off with my head in a bowl and during which I spend hours in bed feeling physically awful and anxious, and I wish death would hurry. The reality is that what I want, or the way it vaccilates, matters little. It will come in its own time

Butterflies

2008-09-15T15:40:00.003-04:00

I have never been much of a poet. My mother recently gave me a book of poems that I wrote as a young child and that she had sweetly saved for thirty years. I assume that I wrote poems for school assignments over the years, but I only ever remember liking one of them.

My sophomore year of year school we had this cockamamie English class that rotated across four different teachers over defined blocks of time, each block focusing on a different aspect of a English: literature, speech, etc. Moya Kaporch was one of the four English teachers. She was an incredibly sweet, enthusiastic, young woman with bright red hair cropped closely to her head, an enormous dimple, and a ready smile. Moya loved learning and teaching; she could hardly contain her joy as she imparted her wisdom. Quite honestly I hated English classes, but I loved Moya and her class. After all my years of education, I still consider Moya one of the best teachers I ever had: a good teacher can make something you detest into something you enjoy. Moya did that for me and the written word.

During the Moya rotation of sophmore English, I had to write a poem. I was in crisis mode, “I can’t write a poem.” I thought to myself. Poetry befuddled me at this point. My dad always used to quote a line from “Trees” by Joyce Kilmer, “I think that I shall never see a poem as lovely as a tree,” when I was a kid. It never made sense to me: trees and poems didn’t seem comparable. One sees a tree but reads a poem. I just didn’t get it.

I puzzled over the assignment. My little 15 year-old life and opinions didn’t seem worthy of poetic rhyme. Then I thought of a particular classmate, a lovely blond girl with a captivating smile who was the belle of every prom in a 10-mile radius. Everyone was jealous of her and the way boys turned to putty in her well-meaning but apparently powerful hands. As Alana Davis sings, “everyone harbors a secret hatred for the prettiest girl in the room.” Because this girl and I sang together in a group at the local boys’ Catholic high school, I got to know her and get past all my preconceptions about her. She was sweet, kind, and funny. I enjoyed being with her at rehearsals, and she became my friend. So that night I wrote a poem about her. I wrote about the way everyone else seemed to see her and judge her without giving her a chance. I wrote about the beautiful person underneath the physical beauty.

The next day Moya randomly selected my poem from the pile. I was panicked. Ours was a small school and the subject of the poem would be obvious to everyone in the room. Moya read the poem aloud, “Oh, Michelle, you must have written this during the storm last night.” Then she returned the poem to the pile of them on her desk and read a few more. The following day, Moya called me to her desk and informed me that someone had stolen my work. Apparently it had been lifted from the pile on her desk. I remember feeling frustrated because the words had come from my heart in a single flow and I didn’t think I could recreate it. It was the end of my poetry career.

Some twenty years later, my sister-in-law asked me to write a poem for her wedding. “Oy, again with the poetry assignment,” I thought to myself. Bill was out at the lab one night and the kids were in bed so I decided to try to come up with something. I felt like the Grinch with his sore puzzler, “What could I possibly say to a young new couple about marriage?”

Seven years into our marriage I was missing excitement and butterflies. I wanted to feel like a swooning newlywed again. Then I remembered one night standing in front of the mirror before bed. I was wearing this beat up T-shirt, the kind comfortable from years of wash and wear. Glancing at the holes that rimmed the collar seam, I began to laugh at myself, “You’re a sight.” Then it hit me, the very characteristic that I treasured in this ratty shirt – comfort – I failed to appreciate in my own marriage. With that image in mind I started writing about butterflies and comfort and what my marriage really meant to me. As I wrote tears pour from my eyes, down my cheeks and soaked my turtleneck. Bill returned home to find me with puffy reds eyes surrounded by wads of wet tissues. “Are you ok?” he asked. “Yes, I’m fine,” I replied.

While my mother and Bill’s mother loved the poem, Jane wasn’t too thrilled with it initially. I wasn’t surprised by Jane’s reaction, the poem doesn’t paint the most romantic picture of love. And I admit that the words would tend to take the air out of the newlywed balloon. But ultimately Jane did ask me to read it at the wedding and I managed to get through it without crying because for me the poem was a gift to Bill more so than Jane and Josh.

Butterflies don’t last

When a romance is new
We greet it with the same anticipation we reserve for spring
When the world seems ripe with possibility and promise

When a romance is new
The sight of our beloved fills our bellies with butterflies
And we feel reborn into this otherworldly emotion that thrills and cajoles us
Delighting in what remains undiscovered and unknown
Butterflies compel us to follow them.
And follow we do
For there really is no other choice

But butterflies don’t last

Like the winged creatures that grace our fleeting summer days
The butterflies of infatuation move on and make way
For love

For infatuation is not sustainable
It will not endure the inevitable ebbs and flows of life
It cannot bear the weight of life’s tragedies
It imprisons us in a fragile house of cards

But love
Love envelopes us with comfort like a shirt perfect from years of wash and wear
And with that comfort we find freedom
to dance without fear of embarrassment
to bare our souls without fear of ridicule
to trust without fear of disappointment
to give without fear of being taken for granted
to err without fear of reprisal
to be ourselves without fear of rejection

With love
At the end of the day we fall into bed with the person
who echoes our laughter and wipes our tears
who shares our dreams and mourns our losses
who holds our hand, just because
who accepts us as we are, with all our imperfections

You miss the butterflies when they go
Longing for their intensity and their elusiveness
Set them free with gratitude
Without them, your love would not exist
But it is in letting them go that you truly become free
To love

I still don’t think I have the whole poet gift. To me, poems just seem like prose with shorter lines broken up in pieces. This suggests to me that I am missing something essential in my appreciation of this medium. But, then again, every once in a while a poem sneaks up on me and I am always glad when it does so.

The Voice of Reason, Part II

2008-09-14T11:48:00.002-04:00

On Monday night I was sitting on the floor cleaning out one of the bathroom cabinets and mumbling irritably to myself. I heard Bill come into the room and open the linen closet. “Bill,” I began trying desperately not to raise my voice, “Stephanie and I spent a lot of time cleaning out and organizing the closet and these cabinets and they are already a mess again. Could you please put things back neatly where they belong?” There was silence. I looked up to find not Bill but Marie staring back at me.

“I’m sorry,” she stammered looking guilty, “I should have stopped you. I don’t know why I didn’t.” I continued to grouse about Bill’s refusal to keep the house in order. That’s when Marie, to her credit, braved dangerous waters. “He can’t, Michelle. His plate is already completely full. He is bearing an enormous burden and doing it as well as he possibly can. I can’t do one more thing, no matter how small it seems to be. He is at his maximum.”

I began to cry tears of anger, guilt and frustration. I wasn’t angry with her: she was telling me the truth as gently and lovingly as possible. I was angry at this situation that I cannot rectify. I do not have enough energy to keep things organized the way I once did, but messy pantries, closets, and drawers still rattle the obsessive compulsive in me. Along with my anger I felt guilty for demanding even more from Bill, who is already drowning in turbulent waters and facing the reality that the future will lead him to a far more treacherous place before he reaches a calm shore. And, as always, I felt frustration that life had tied my hands behind my back and left me so reliant on others to accomplish the simplest of tasks.

“I’m sorry,” Marie cooed, “I shouldn’t have said anything.” I assured her that she had done nothing wrong, that I needed to hear it. In realty, Marie is the only person who could get away with saying those words to me. Within anyone else I would have become angry and defensive. “I try so hard to accept this illness – the physical and emotional suffering, the changes it has brought into my life – and I try not to complain, but all of this is incredibly difficult for me too,” I explained.

As I drifted off to sleep that night I continued to weep. The next morning, while Marie and I organized my office, I was finally able to articulate succinctly my dilemma, “I feel like this disease is demanding that I become a saint.” I feel like I must bear this cross without complaint, feel only gratitude for my blessings (which I fully recognize are many), and acknowledge the reality that my life is still better than the lives of most people on the planet. I feel like “being a good person” demands that I feel no anger, no bitterness, and no desire. “But I am not a saint, I am just a human being and I can only take so much,” I admitted.

I sat there in child’s pose with Marie rubbing my back. She felt guilty for her perceived role in my sadness, but she had merely brought existing feelings into focus; she had done me a favor. I realize now that I am desperately afraid of devolving into a nasty, bitter person as my body continues to fail. I fear that I will ultimately lose myself – my spirit – to this disease and that seems far worse to me than losing my body.

The Voice of Reason, Part I

2008-09-13T13:10:00.003-04:00

My best friend Marie flew in from Chicago last Thursday to watch the kids while Bill and I attended the Narrative Matters conference. On Friday morning, while Marie helped me get ready I made a confession, “Sometimes I think it’s all in my head.”

Other people roll their eyes; Marie rolls her whole body. I’m sure part of this is being Italian-American and, therefore, prone to non-verbal forms of communication. I suspect, however, that it has a great deal more to do with the fact that Marie is the hearing child of deaf parents. Marie grew up learning English and American Sign Language (ASL) and is fluent in both (as well as Spanish). In ASL, signs as well as their location relative to the body convey important meaning, like when an event happened. Any time I have watched people sign I am struck by the amount of facial expression used, far more than seems typical among hearing persons. So I always assumed that Marie’s physically expressive nature related somehow to her ASL fluency and her experiences in the Deaf community.

After I made my confession Marie widened and rolled her eyes while simultaneous rolling her head in a circle and pivoting her shoulders so that her palms faced outward, her fingers spread-eagle. She was exasperated, “Ok, either you’re really sick or the best fucking actress in the world.”

I don’t know why I insist on doubting the veracity of my illness. Perhaps it is the years of clinical training. Whenever we could not identify the source of the patient’s problems or treat them effectively, we assumed that the complaints were psychosomatic and absolved ourselves of any responsibilities. This bothered me as a young nurse. Even without any illness experience of my own, it seemed rather arrogant to assume that the patient was “mental” if the physician could not identify the illness. The underlying premise of this assumption is that modern medicine has no remaining unsolved mysteries. And, as a patient with an illness about which so little is understood, I can assure you that modern medicine has long, long way to go.

Years ago I hated the way families were treated when no explanation for their child’s illness could be found. In some cases providers diagnosed such cases as Munchausen syndrome by proxy, in which an adult caregiver ensures that his or her child will experience some medical affliction and, consequently, causes the child to suffer treatment. While I have no doubt that there were cases worthy of this diagnosis, it always struck me as a little too convenient, a bit of a cop-out.

Perhaps I internalized this “blame it on the patient” tendency a bit. When I reach the top of the stairs out of breath, heart racing I tell myself, “You need to deal with your anxiety.” Or maybe it comes back to control, if it’s psychological, then I can reverse it somehow, “Maybe anti-anxiety medications would help.”

Yesterday I had an exercise test done in the pulmonary function lab that left no doubt that my illness – my difficulties breathing, my rapid heart rate, my activity intolerance – are physical in nature. First I had to do pulmonary function tests. My forced vital capacity, the amount of air I can forcible blow from my lungs, was 26% of the amount predicted for someone my age, gender, and size. In January, the same number was 42%. Then they put me on an exercise bike and hooked me up to an EKG and the pulmonary monitor. As I began to pedal they recorded my physical response. Within two minutes I had “peaked” at 75% of my lung function an 85% of my target heart rate. I lasted 6 minutes on the bike. And, to think, I used to ride 36 miles at a time. It was time to accept that my brain had little control over my disease-ridden, weary body.

On the way home Bill was speeding. “Slow down. The kids are already going to lose one parent; they cannot lose two. You need to drive better.” I told him it was time for us to face to cold, hard truth: the end of my life is drawing near. It is time to make a living will, a will, plan the funeral arrangements, etc. He agreed but I could tell that he is still not willing to raise the white flag. And I need to see his surrender so have his permission to go.

We went to the movies with a friend to see, “Burn After Reading.” As I watched the trailers for the Christmas releases, I wondered if I would be here to see any of those films. The movie was amusing but even my George Clooney crush could not pull me out of my despair. All I really wanted to do was crawl into a ball and cry. Why hasn’t all my anticipatory grief left me more prepared for this? I thought I was already skilled at navigating these waters and that the march toward death would eventually lead me to some sort of sea of tranquility where it was all well. I guess I was just delusional or maybe the tranquility comes when I start getting some nice narcotics. I’m not above drug-induced tranquility. I may have successfully avoided ever taking a single puff on a joint (family history of substance abuse left me petrified of addiction), but I am more than happy to take whatever drugs they will give me at this point. When the 76 year-old mother of a friend went to discuss sleep issues with her doctor, she expressed concern about addition. He handed her the prescription and said, “At your age, go ahead and get addicted.” I think this advice applies in my situation as well; I figure at this point I have little to lose.

Mother and Child Reunion

2008-09-12T09:30:00.002-04:00

I was born on a cold January day just slightly behind schedule. I was due on January 17th but born January 18th at 5:20 am. Ever since I have always been just a little late for everything. At the time I was born, my grandmother was in the final stages of pulmonary sarcoidosis. While my mother cared for me during the early weeks of my life she also nursed her dying mother.

My grandmother died in late March, beginning my mother’s protracted mourning period. In the Italian tradition, my mother wore black for a year. Though she eventually left behind her funeral garb, her mourning never ended. Her mother’s death left a void that could not be filled by anyone or anything.

Throughout my life, my mother always encouraged me and showered me with praise. I was one of those children who was eager to please, and I worked hard at school and home to make my mother happy. I never doubted my mother’s love or admiration, even to this day, but I always felt like a disappointing substitute, an unfair trade. Yes, my mother finally had her coveted daughter on the fourth try but, as I grew, it became clear that I was a carbon copy of my father: a fiercely independent bookworm with a bad case of wanderlust. It eventually became clear that my mother and I would not share the bond that she and her mother once had. Yes, I loved my mother, but I didn’t need her the way she had needed her mother. And my mother needed to be needed.

As I grew older I began to cringe whenever she would bemoan the loss of her mother, “I lost my mother too young.” In my egocentric twenties, her grief just intensified my feelings of inadequacy. No matter what I accomplished in my life, I felt like I would never be an adequate replacement for her mother. Nothing I did could help the child in her that longed for her mother’s love even two decades after her death.

“There is a reason and purpose for everything,” my massage therapist assures me. Sometimes I believe her. When my mother was nursing me through the recovery from my feeding tube we spent nearly two months together. She helped me shower and blow-dried my hair. She changed my bandages and comforted me through my physical pain. We cried together: my spoken fears of leaving my children and her unspoken fears of burying her daughter.

When my mother was here caring for me she spoke again about her mother’s death. “I was so angry with God when I was pregnant with you because my mother didn’t tell me how sick she was until it was too late,” she told me. My mother reasoned that had she not been pregnant, her mother would have told her the truth and things would have played out differently. “And she was so sick after you were born and I couldn’t take care of you because I was taking care of her. ‘Why did you do this God?’ I asked. I prayed that God would make her better but my mother told me, ‘God is not going to answer your prayers. He is going to answer mine. You have your daughter. Mary [my aunt] has her son.’”

God did answer my grandmother’s prayers, leaving my mother heartbroken for the last 40 years. “I loved her so much. I didn’t think I could go on without her. But I had no choice. You were just an infant; you needed me. Because of you I kept going.” All my life I thought I was an inadequate substitute for my grandmother because I didn’t given my mother the type of relationship that she and her mother had shared. I never knew that I had given her a reason to keep living when her heart was so shattered that she wanted to die.

My poor mother, the healthy woman sandwiched between her mother and her daughter both victims of autoimmune disease induced pulmonary disease, seemed to be at the end of her patience with God on her last visit. “I have trusted him for 12 years that you would get better and you aren’t and I am so angry with him,” she admitted. I’m sure she looks into the future and wonders, “How can I bear the doubling of my grief?”

Any unresolved issues that I had with my mother evaporated during the time she spent here nursing me and running my household with love. I realize now that I mistakenly personalized her expressions of grief over losing her mother. Her grief has nothing to do with me and never has. I could never take my grandmother’s place in my mother’s life. Seeing my mother’s grief in a depersonalized way – seeing her as a child who misses her mother – has made me realize that losing your mother hurts at any age. Whether I live another year or another decade, my death will hurt my children. That is the price of maternal devotion, filial affection and the shared bond between a mother and child.

“Will you die?” Amelia asked me one night as we sat together on her bed. She was young, perhaps four. “Yes, everyone dies,” I answered honestly but nonchalantly.

“But then I won’t have a mother.”

Her blue eyes made my heart ache. At the time, she knew I was sick but has no idea of how sick I would eventually become. She had no idea that I was unlikely to see her graduate from high school. The question she was asking was not quite rhetorical but naive; she had no idea how profoundly relevant it was for her. “Well, I won’t be here physically,” I reassured her, “but I will always be in your heart and, besides, life gives you lots of mothers.”

I thought about all the mothers in my life. When my house burnt down in graduate school I moved in with one of my professors and his wife, Jeanette. She literally mothered me through one of the worst moments of my life and became a lifelong friend. My mother didn’t work outside home so as I approached motherhood I found that I had no role model for balancing a career and family life. My dissertation advisor Sally was a wonderful mother to twin girls who were born during the first year of my doctoral studies. In Sally, as well as other female colleagues, I found women from whom I learned to balance family life and career demands successfully. My friend Estelle, a feisty ex-New Yorker who shares my birthday with a 40-year gap in years, and I attend plays and shows together, sharing our love of the arts. And from two elderly friends, Millie and Tina, I learned both the wisdom and hardship that comes with aging and dying.

“You will always have a mother when you need one, just be open to them. You will always have what you need,” I promised.

The answer sat well with her that night five years ago. Much to my surprise I left her room feeling peaceful, knowing that I had laid the foundation for the inevitable. In doing so I not only assured her that she will be ok without me but also gave her permission to allow others to take my place when I am physically gone.

I remind her often that life gives us many mothers. In passing on this belief, I am teaching her that loving me doesn’t demand that she be unhappy when I am gone and that finding substitutes for my love is not a betrayal of our relationship. In comforting her I comfort myself. I take peace imagining her in the loving arms of my friends and relatives and the women who will cross her path in the distant future and mother her for me. And I like to think I am at least somewhat replaceable.

Update on the Line "Exchange"

2008-09-11T15:16:00.006-04:00

It sounds funny doesn't it? Like I'm at the customer service desk at Target, "Excuse me, my central line isn't working. I'd like to exchange it for a new one." Of course, the big difference between hospital care and retail is that the exchange isn't free in health care. The medical bills just keep coming and coming!

For the most part the line exchange went smoothly except for one small detail. Bill and I told everyone -- the nurse who prepared me for the procedure, the charge nurse, the resident who consented me for the procedure, and both nurses in the interventional radiology suite -- that they couldn't use their usual Versed/Fentanyl combo with me because I don't respond to Fentanyl. Fentanyl is a narcotic frequently used for conscious sedation during localized procedures that do not require general anesthesia. We know it doesn't work for me because during one of my feeding tube placements I was given 400 micrograms (A huge dose for someone my size) and still awake and carrying on a conversation. The drug just doesn't touch me.

So we were thorough in spreading the word and the staff assured us that they would use Versed and Dilaudid, which has worked well for me in the past. Once again I was awake for much of the procedure and asking questions. We came to discover in the recovery room that the doctor performing the procedure ordered Fentanyl despite our requests. When I was still awake they just kept giving me more Versed. Finally someone gave me Dilaudid.

When we learned that our request had not been honored, we asked to see the resident. He had impressed me during the informed consent so much that I told him so. He explained the procedure clearly, described the risks and their relative probabilities, and asked if we had any questions. He wrote down the information about the Dilauded and I'm quite sure he passed it along. So, this poor guy, who probably wasn't in the room for the procedure because he's busy doing the "scut" work, had to listen to our frustration. He apologized so nicely that I thought someone should videotape him and make doctors all over the country watch it and learn something.

The attending physician, the guy "in charge," apologized but was not nearly as sincere. "It was my decision to use the Fentanyl because it works so quickly," he explained. So either the message never made it to him, he just ignored the messenger, or he didn't trust my knowledge of my past medical experience and my responses to drugs enough to adjust his standard approach. So much for patient-centered care. I am beyond frustrated with providers who do not listen.

On the upside one of my favorite nurses took care of me. She took care of me the day they put in the first feeding tube and the day they pulled the second one out for good. She is a wonderful nurse and human being; she made it much easier to deal with my frustration by acknowledging my right to those feelings and letting me vent.

I will keep you posted on the heart rhythm. I was still having the premature ventricular contractions in recovery, but then they stopped. Bill listened to my heart when we got home and the rhythm was still normal so I hope this is going to work ...

Thanks for all the positive thoughts, prayers, etc.

Central Line Exchange

2008-09-11T08:52:00.002-04:00

Hi everyone,

I may not be able to post much today. I am off to the hospital to have my central line replaced. It is dwelling in a tiny vein as opposed to the subclavian vein. We are hoping the new line might reverse my heart arrhythmia (the electrical conduction of my heart was normal until the line was placed) and, perhaps, the edema.

Prayers, incantations, crossed fingers, positive thoughts, are all welcome. I am an equal opportunity prayer recipient.

Michelle

P.S. Let's all take a moment today to remember those who died in 9/11. Hard to believe it was 7 years ago.

Welcome

2008-09-10T09:38:00.002-04:00

For those of you reading this blog for the first time today after learning about it in Health Affairs, “Welcome.” I thought I’d provide a little blog background today for new visitors.

Why read the diary of a dying young woman, the mother of two small children, someone with a loving marriage, a successful career, and an army of loving friends and family? Why read the story of someone who is about to lose everything, someone who is watching her life slip uncontrollably through her hands like sand from an hourglass that shattered, setting a life on a wholly unpredictable and unfortunate course? Why share that sadness? Why share her hopes, especially those that are eventually dashed? Why eavesdrop on the heart wrenching discussions between this mother and her children when they brave the reality that she is leaving them? Why be a voyeur into a marriage where “in sickness and in health” is not a promise but a daily reality?

I am this dying mother, wife, daughter, friend, sister. I assure you that I am no one special. I am simply a woman facing a premature death and learning, day by day, how to balance hope and reality; how to laugh through my tears; how to find joy despite my shattered heart and my anxious mind. Why read my diary? Because I am just like you. It just so happens that I am currently facing the grim reality of my own mortality forty years ahead of schedule.

After a decade of truly living with scleroderma, I have grown increasingly ill over the past 18 months. As a result of medication side effects and four months of chemotherapy, I lost 19 of my 95 pounds in 13 months. I had a feeding tube placed in hopes it would help me gain back the weight; it created far more problems than it solved and was removed after four months. I am now on total parental nutrition (TPN), which meets all my caloric demands through my blood stream. The TPN will likely extend my life, potentially for years, and hopefully improve my quality of life as well.

The fallout from my medical crisis has been significant. Imagine living a life where death feels just around the corner. For me it has been a physically and mentally bruising battle, one that often made me wish for death because I was so tired of fighting. But then I would look at my kids and step back in the proverbial ring. My husband has the difficult job of managing my health care, being an optimistic cheerleader, and still addressing his own grief. And my children worry that they are losing their mother long before they are ready to let her go.

I know it all sounds very depressing. I can assure you that it is not. Ours is an incredibly rich and sweet life. Yes, we cry often, but we laugh more. We make memories, intentionally, every day. We don’t do it with photos or videos, though we should do a little more of that for posterity’s sake, we do it by being truly present in the moment: by planning a picnic and lying out in the sunshine with bagels and cream cheese, playing Three Bill Goats Gruff under a bridge, blowing bubbles.

I have learned that fighting for your life is hard work but, with an open heart, it brings a multitude of gifts. My family and I learn from this struggle every day, and it has brought us closer than I ever dreamed possible. And we have learned to find humor in absolutely everything.

This blog is a collection of personal essays about my experiences as a somewhat typical parent in the face of a difficult present and an uncertain future. One evening my husband and I were at the kitchen table joking about the idea of making these essays into a book. “Maybe Amazon could bundle it with a six month supply of the antidepressants of the person’s choice,” I suggested and we laughed over our bowls of soup. But, honestly, I don’t think the blog is sad. I think is it a candid, open, and real diary of a life in the balance, peppered with humor without resisting the inherent pathos of the subject.

In this life we all share only two things in common with absolute certainty: birth and death. C.S. Lewis supposedly observed that we “read to know that we are not alone.” My dream and hope is that in this blog I will not only making the sick and the dying feel less alone but also making the living more fully aware of the precious gift they experience every day: to feel the ease of the breath moving in and out of their lungs, to notice the freckles on their children’s faces, to look at their loved ones more intently. And if reading the blog means they waffle between sobbing and laughing out loud, then I accomplished my goal because truly living means feeling everything, all the way.

Millie

2008-09-09T12:24:00.002-04:00

Like having children, pet ownership opens your world. I had lived in my third-floor apartment for nearly two years when Bill and I brought Watson home. Suddenly, my neighbors and I had something to say beyond “hello.”

Soon after getting Watson I met an elderly woman, Tina, who lived around the corner from me. She had a coarse-haired, Corgi-like dog named Benji. During one of our first meetings, Watson was annoying Benji in the way that puppies always annoy older dogs. Benji, in retaliation, peed on Watson’s head. Watson looked ridiculous: an all white dog with a huge yellow stain between his ears. I guess the event broke the ice rather quickly for Tina and me. Every day while we were waiting for our respective dogs to do their business she and I would chat. I came to enjoy our daily conversations and soon an unlikely friendship bloomed despite the enormous generation gap. And it is a friendship that has lasted over the years and the cross-country moves.

One day another elderly woman from my building stopped me while I was getting my mail. “You are Michelle, aren’t you?” she asked. After I confirmed this she continued, “Tina waxes poetically about you. You must come to dinner.” The woman’s name was Millie. She was a strong-willed, Jewish mother of imposing physical stature. I couldn’t have declined the invitation even if I wanted to.

On the evening of our dinner date I walked two stories down to Millie’s apartment. It was neat and tidy with 60s style furniture and artwork. The lamp bases on either end table were the torsos of naked women. Then and there I knew that Millie was one of a kind.

She served dinner on beautiful plates shaped like maple leaves; they were exquisite. I think she served chicken, but I vividly remember that she served me a roasted baked sweet potato still in its skin. All my life sweet potatoes had gone from can to 2-quart saucepan where they were covered with brown sugar and pancake syrup. I had never eaten an unadorned sweet potato in my life, and it was a revelation. It is still my favorite way to eat them.

Over dinner Millie and I shared our life stories. Of course, she had a lot more to say. She had worked as a nurse for most of her life and was the mother of two children. She and her husband moved to Chapel Hill from Princeton when he retired. He thought Chapel Hill some sort of “Princeton South”; Millie disagreed. Soon after the move, her husband developed multiple myeloma and died a horribly painful death. Millie herself was a breast cancer survivor. Clearly I was eating with a warrior.

Over the next several months our friendship grew. Millie suffered from terrible migraine headaches. Once, when asked by a doctor what she had tried for her migraines, she responded, “Everything but suicide.” During her episodes I would run to the grocery store for her or feed her cats so she didn’t have to get out of bed.

Shortly after we met, Millie was diagnosed with cancer. As I recall, she declined treatment though I may not be completely right about that. She began to fail quickly. One night she was very ill and called me. I ran downstairs and stayed with her. On her bedroom wall there was a mesmerizing photo of a woman standing on a hilltop with her back to the camera and her right arm outstretched. On her gloved right hand sat a magnificent bird of prey. Mille saw me staring at the photo, “It’s my daughter.” She told me how her daughter had try to rehabilitate the bird and set it free but the bird appeared to have some neurological problems and she ultimately had to give it to professional organization. “My daughter says the photo looks like a Tampax advertisement,” she noted dryily.

Eventually Millie’s condition became grave and she entered the inpatient hospice facility north of Chapel Hill. On a rainy morning I drove up to see her. She was groggy from the pain medications but able to have a conversation. She brought up the then-breaking Lewinsky scandal and stated, “ A man is nothing but a penis.” I laughed at her, but I think she was serious. Then she told me a hilarious story about a crush she had as a young nurse. Finally she had the opportunity to work with the object of her affection, a gorgeous doctor. But he seemed to be recoiling from her at every opportunity. It was only much later that she realized that the garlic sandwiches that she brought for lunch every day might have something to do with his revulsion. Apparently garlic can ward off all types of people, not just vampires.

She seemed to drift off to sleep for a while and I stayed by her bed. It was my first experience with death as an adult and I didn’t’ know what to do. Should I leave without saying good-bye? Should I wait until she awoke? I wasn’t sure. But I could see that Millie would soon be gone and I didn’t want to leave without saying good-bye. Eventually she awoke again but I wasn’t looking in her direction at the time. “You’re special,” she said to be softly, “You don’t know it yet, but you are. You are like my daughter. She doesn’t know that she is special either.”

Those words were among the last she spoke to me that day, and they have always remained with me. I don’t think she was just trying to be kind; I think she was trying to tell me something important. And I wonder what she saw that I could not see.

Millie passed away. Her daughter held a memorial service in Millie’s living room. We passed around a medal Millie had won in elementary school engraved with the word "character." We each had our turn to hold the medal and reflect on Millie. When Bill held the medal he posited that it was for being a character. I told the garlic story. It was a wonderful gathering.

In the following days her daughter asked me if there was anything I wanted to remember Millie. Of course, I wanted the plates but her daughter naturally was taking them. So I asked for the naked lady lamps much to Bill’s chagrin. We also took her dryer because we needed one.

The naked lady lamps did not survive the cross-country moves, but the dryer still runs in my laundry room; it is easily over 20 years old. I suppose I am one of those rare people whose only memento of a loved one is a major appliance. But seriously, sometimes I run my hand along the dryer and think of Millie and her words and hope that I am living up to them.

Narrative Matters

2008-09-07T20:26:00.007-04:00

The Narrative Matters conference ended today. My body cooperated: my cough was at a minimum, I was able to enjoy small amounts of some incredibly delicious food, and the edema held off until the last day. In fact, physically it was the best weekend I have experienced in quite some time.

I had been looking forward to the conference for weeks, but the conference exceeded expectations in every possible way. I cannot remember ever meeting 50+ interesting, down-to-earth, funny, honest, warm, wonderful, real people in a 48 hour period. Some of the attendees have taken personal tragedies -- battles with cancer, medical traumas, the loss of children either as a parent or a clinician, etc. -- and turned them into opportunities to be healers in some way. Some heal others through the written word and their humor, some founded organizations to help or educate other patients, and some use information technology to revolutionize the role of the patient in their own health care systems or on the Internet. One attendee, a self described "Hustler for Health Care," appears to be single-handedly ensuring access to health care for low income people in the DC area. All weekend I felt like I was in the company of some truly amazing and heroic yet humble people.

Some of these individuals heal others on a personal level while others do their part to heal a very broken health care system. And some try desperately to shine a light on health care issues that affect all of us. For example, in her essay, Irene Wielawski (http://content.healthaffairs.org/cgi/reprint/19/5/180) demonstrates how perverse incentives in insurance billing practices, where hospitals raise prices to absurd levels to negotiate with private insurance companies, leaves already vulnerable uninsured patients with bills that far exceed the true price of care. If you have private insurance, you know from your "Explanation of Benefits" that your insurer almost never pays the amount charged by the doctor or hospital. Yet, uninsured people are financially responsible for their bills despite the fact that everyone in the system knows the charges aren't "real."

Not all the essays are about insurance. Many are heartfelt, beautifully written narratives that would touch anyone, regardless of their health or insurance status. Follow this link to a story of the beautiful death of a 9 year old girl with AIDS: http://content.healthaffairs.org/cgi/reprint/23/6/205.

Health Affairs is a journal that is widely read on Capitol Hill by congressional staffers, but the greater public needs to know about these stories. You see, as one attendee put it this weekend, sooner or later we are all patients. While a certain percentage of us will die instantly and unexpectedly in an accident, most of us will take the usual route through some amount of suffering on our way out of here. So, health care is something we should all concern ourselves with as people and as citizens.

When we are healthy, we can "afford" to be ignorant about health care issues. Or can we? I was 26 when I got sick with an incredibly rare disease. Luckily I had insurance. More importantly, I was lucky I was able to continue working since my coverage was from my employer. Now I am disabled and on Social Security. I'm sure many of you reading this assume that I now have Medicare due to my disability status when, in fact, I have to wait 2 years to obtain health insurance through Medicare. Thankfully I am married to a man who works for a large employer and have coverage through him. Otherwise I would be forced to "spend down" to Medicaid, the public insurance system for the poor and disabled, in order to get coverage. I would need to become impoverished in order to get health insurance. My illness could have financially devastated our family, ruining all the hard work that we put into earning the American dream. And we still could lose everything to an illness that I could not have avoided with all the preventive care in the world. Why? Because in the United States we don't guarantee health care for all; we are the sole wealthy industrialized nation with that notorious claim to fame.

The essays cover the gamut of health care issues from medical training to pharaceutical marketing and prescribing behavior. there is something here for everyone. Many of us will some day care for elderly parents, fight our insurer for coverage of a drug or procedure, confront a formidable illness, or deal with a mental ill family member, all issues that have been written about in Narrative Matters. These essays are true stories from everyday people trying to obtain or give care in a system riddled with challenges for everyone involved.

Thanks to the Kellogg Foundation, Narrative Matters essays are free to the public. You can sign up to get email alerts and a link to newly published articles at http://content.healthaffairs.org/narrative_matters/. They generally publish 2 articles every other month. I don't recommend this lightly. I know how busy life is for us all, but I think many people will find these essays as enjoyable and informative as I do. And, who knows, perhaps you will be inspired to write and submit a story of your own.

Uterus Worthy

2008-09-06T22:26:00.002-04:00

Over the summer I received an invitation from the policy journal Health Affairs to attend their Narrative Matters conference. Narrative Matters is a small section of the journal devoted to first person essays that illuminate an important health care issue facing the nation. These stories put a human face on topics that might otherwise seem academic and theoretical. I have been a fan of Narrative Matters for years. Whenever the bimonthly journal arrived in my work mail slot, I quickly opened it, bypassed all the quantitative articles, and dove into the stories. In my distant Ivory Tower world, they were a constant reminder of the importance of health care in people’s lives and the desperate need to improve our system of care. Plus, they were usually as enjoyable and well written as most of the works of fiction that sit stacked on my bedside table.

I was delighted to be invited to the conference and quickly accepted. Bill and I planned to make the trip together since I am not capable of traveling alone at this point. All I had to do was be physically well enough to make the trip. I spent most of this past week battling edema and shortness of breath. By Thursday I sent myself to bed for the day, as I did not want to risk not being able to attend the conference. As I sat on my bed Thursday, I kept hoping and praying, “Please let me make it through the weekend so I can enjoy this opportunity.”

Marie, my best friend, arrived from Chicago to take care of the kids for the weekend. Bill spent Thursday night and Friday morning preparing for the trip, which involves packing my TPN in a cooler and all the TPN related supplies, my chest percussion vest and nebulizer, all my medications, the vaporizer, and wheelchair; arranging for a portable oxygen concentrator because my insurance has not yet approved me for one; and providing Marie with detailed instructions, maps, and the kids’ calendar of activities. He managed to do all this while also getting the kids off to school, attending his weekly division meeting, and picking up a medication refill. All I did was pick out my clothes and move the medications and toiletries that Bill had prepared from the bathroom counter into the toiletry bag.

When we were finally on the road I looked around the car, “You did a great job getting everything ready. Thank you.” I was being very sincere; I could not have made the trip without all his efforts. But Bill is not a serious guy. “It brought back memories of packing the car for trips when the kids were little. I hated that damn pack-n-play,” Bill replied. “You know,” I observed, “You are positively uterus worthy. Seriously, you do this as well as a woman.”

I realize how sexist this is, but let’s be honest, men are not the gender with a penchant for multitasking. During the whole hunter gather period women’s brains evolved to do many things simultaneously lest their children be eaten while they were concentrating of one of the other 15 things requiring their attention. Men, meanwhile, were out “hunting.” Judging from my experience with four brothers, one father, a husband and one son, I have serious doubts about the whole “hunter” idea. Most men I know cannot find anything. I think our male ancestors just sat around talking all day at the prehistoric equivalent of McNally’s Tavern and hoped to find a recently deceased animal on the way home.

“Wow. So what do I get with this uterus?” Bill joked. In my head I heard the theme song from The Dating Game and the booming voice of a 70s game show host saying, “Bill’s just proved himself uterus worthy. Tell him what he’s won.” Bill continued, “Let’s see monthly pain.” “Don’t forget all the great menopause symptoms: hot flashes, irritability, etc.,” I added. “Ok, let’s make a list of pros and cons,” Bill joked, making two columns in the air. I was having fun with this. With four brothers, I have spent my life trashing guys for fun. “Let’s see: deep lifelong friendships with multiple people that don’t involve feigned interest in beer and sports, ability to multitask, potential to bring forth life into the world, intuition, …” Bill interrupted me at this point, “But there’s still the monthly pain, right? Forget it. No deal.”

The Blame Game

2008-09-05T10:36:00.001-04:00

About four years into our marriage, bickering was at an all time high. I suppose it was the cumulative effects of a cross-country move, Bill’s new job, my return to the workforce, and all the other realities of being a dual-academic career couple with a toddler and an infant. At our second or third session, the counselor observed, “Boy, blame is really important with you two.” He was an astute fellow: Bill and I devoted most of our arguing to determining who was to blame for a given situation rather than figuring out a solution to the problem.

For the past eight months, I have made a full-time job out of blaming myself for my situation: if I had only followed my instincts and not done the chemo, if only I could eat more, if only I hadn’t gone to Florida and caught a virus, if only I had insisted on TPN instead of the feeding tube, if only, if only, if only. I had made a sport out of whipping myself and I didn’t know how to stop.

While I could look at my situation as a former clinician and see that I was not at all responsible for the rapid decline in my health, I could not change the way I felt. I felt I was to blame somehow. If only I had zigged when I zagged, then everything would have been fine. “Why didn’t you trust your instincts?” I asked myself over and over. “This is all your fault. If you would just eat more, if you would just start taking walks again, things will get better,” I tell myself several times a day. But then I walk 10 feet to the bathroom and back, quickly becoming out of breath. Still the need for blame persists.

On Tuesday morning my therapist finally admitted to me, “I wish I knew how to stop you from being so hard on yourself.” Being hard on myself is how I have achieved almost everything in life. I always expected a lot of myself though not in a mean way. I just set my standards high. It was functional for a long time, but now it has morphed into a process of self-flagellation that is making a bad situation worse. I knew on Tuesday that somehow I had to stop playing the blame game for good.

Tuesday night Amelia and I were watching Season 1 of Little House on the Prairie. Amelia discovered the Laura Ingalls Wilder books last year and read every one. For several months all Amelia talked about was Laura Ingalls Wilder. Every conversation, no matter how seemingly unrelated led back to Laura Ingalls Wilder. In researching the author’s life for a school project, Amelia discovered that Laura’s mother was born in Bill’s hometown, which made her positively giddy. As if that wasn’t enough, she also learned that Laura’s older sister Mary was named Mary Amelia. I have to admit that after several months of entertaining this obsession I was beginning to wish that Laura Ingalls had never put pen to paper.

Amelia is no longer obsessed with Laura Ingalls so I decided to start renting the TV shows from Netflix. Amelia and I have been watching them together and, I must admit, they are even more wonderful than I remembered. While Charles and Caroline, the parents, are portrayed as kind and loving parents, they are no means caricatures of perfect parenting. All the characters are realistically portrayed and the themes translate into modern life beautifully. The pacing of the show is much slower than modern shows, which is surprisingly refreshing.

And then, of course, there’s Michael Landon. Clearly I was prepubescent when I watched this show in prime time because I do not remember noticing him. But, good God, he was one handsome fellow; he’s got that dark and stormy thing going that I just love! And there’s a gratuitous shirtless scene in every other episode, which just fans the flames of my desires. (We explained gratuitous to the kids at dinner the other night and Bill described it as “not necessary.” He then went on to explain, “They just had him take his shirt off for the mommies watching the show.” Indeed!) I’m so overwhelmed by his attractiveness that I practically drool for the entire episode. This irritates Amelia highly.

On Tuesday night we watched an episode in which Charles and Caroline allow Laura to adopt a baby raccoon against their better judgment. Eventually the raccoon bites the family dog and Laura, but Laura makes Mary, her older sister, promise not to tell. The following evening a raccoon raids the hen house and Charles discovers and kills the rabid animal. Charles later notices the bite mark on the dog and ties him up out back to observe him for signs of rabies. When Mary discovers the reason that the dog is tied up, she divulges Laura’s secret. After a trip to Doc Baker, the family learns that the dog will become rapid within 8 days and, if he does, Laura will develop the illness within 3-4 weeks. If she develops the disease, there is no treatment.

In the next several scenes everyone in the family is riddled with guilt for their role in the unfortunate turn of events. The girls cry and blame themselves aloud while Charles and Caroline merely look beside themselves with grief and culpability. As I watched them struggle, I realized the real power behind blame. If there is someone to blame, then someone is responsible, and if someone is responsible, then the event is subject to control. If it can be done, perhaps it can be undone.

For months I have been sitting here blaming myself not because I truly believe it is my fault but because I want so desperately to believe that I can fix this somehow. I want so much to believe that all will be well if I just zig at the right time, make the right choice, or take the right medication.

What underlies blame is a belief that we humans have control. Sometimes we do, but probably far less often than we would like to think. I think I can finally let go of the blame now that I realize that it was just a corollary to the fallacy that I am in control of my destiny. And I hope I can reorient all that misdirected energy to something useful for a change.

On Top of Spaghetti

2008-09-04T11:37:00.004-04:00

I realize that this is a little stream of consciousness, but if Virginia Woolf could do it so can I.

When Bill and I started dating, he often joined Grace and me for dinner. The first couple of meals Grace and I would exchange confused glances across the table while watching Bill eat. One night, after Bill returned home, I turned to Grace, “Man we can eat him under the table!”

I eventually discovered that Bill comes from a long line of small eaters. Bill and I met in September and by winter it was clear we were altar bound. It was time for me to make the trip to Wisconsin and meet the Steinbach family. His mother and father picked us up at the airport, immediately loving and friendly in that way the Mid-westerners seem to specialize. When we arrived their house, I met each of Bill’s four siblings one-by-one. After a while, I started to chuckle to myself. With the exception of Bill and his father, who are by no means large fellows, the rest of Bill’s family looked like escapees from the Keebler Elf family compound. Everyone is short and small boned, blond haired and blue eyed. Were it not for my dominant gene coloration I would have fit right in.

On this first visit, Bill’s mother served spaghetti one evening. She placed the medium sized bowl of a nested set of three white plastic mixing bowls (you know the ones everyone had in the 70s) full of pasta on the table. I glanced around at the 9 other people sitting at the table, “Well that’s my serving so I don’t know what everyone else is going to eat.” But, indeed, it was not my individual portion; I would have to share.

I grew up in a family where a spaghetti dinner included two huge pasta bowls filled to overflowing and two large bowls of meatballs, sweet sausage, spicy sausage, and bresola. Looking around the Steinbach table I felt a twinge of panic; I had never seen so little food for so many people. Surely we would all walk away hungry. But I was mistaken. As everyone passed around the bowl of pasta and the side dishes, which oddly included jello, and each took the world’s smallest portions. So I, when in Rome like, acted accordingly and planned on having a late night snack.

“I think I know why your family is so small,” I told Bill. This sounds funny coming from a midget like myself whose parents look like they fell off a wedding cake. The difference is that my family just arrived in America and is going to need a couple generations to compensate for generations of living at the bottom of the economic heap in Europe. Bill’s family has been in America forever. “I think you were malnourished. There just isn’t enough food on the table,” I continued. He laughed at me and went to sleep.

Years later Bill and I were visiting Wisconsin again. Bill’s folks had a dinner date planned so Kathy, Bill’s mom, had made us spaghetti for our dinner. She used a 2 quart-saucepan to cook enough pasta for 3 of us. I waited until she left the house and immediately commenced with making more pasta. Minutes later I heard the back door open. “Drat,” I thought. “What are you doing?” she asked me. “Making more pasta,” I replied sheepishly. Since then Bill’s mom has always made extra pasta and I have felt obligated to make sure all of it is gone by the end of the meal. Careful what you wish for …

Like many other busy families, pasta dinners were one of our routine family meals. In the past, I always ate almost twice as much pasta as Bill. After the feeding tube debacle this past spring, pasta went from being one of my favorite foods to one that I can barely tolerate. It simply takes up too much room in my stomach. So we no longer eat it very often.

Yesterday Amelia had her first horseback-riding lesson. My friend Kim graciously arranged for these lessons and picks up Amelia at school, takes her to the lesson, and brings her back home every Wednesday. I really wanted to see Amelia on the horse for the first time so Kim came and picked me up so I could watch her. This left little time for dinner preparation so I settled on pasta for the meal.

When we arrived home I put the pot on to boil. Amelia watched me pour the pasta into the boiling water, “You better put in more than that. That is not going to be enough.” She may look like she belongs among the Keebler Elves but she eats like a little Italian girl. “You know me,” I responded, “I always make too much or too little; I never get the amount just right.”

We ate our meals and the kids cleaned up the table. In a rare moment of sibling harmony, they began to sing, “On Top of Spaghetti.” I fed them the later verses and they continued to sing, making me smile.

After dinner Bill took the kids to the store to get snacks for their lunches because the Food Nazi made some unpopular selections on the last grocery order. A few minutes after they left, the coughing started. I made my way to the bathroom in time clutching a box of tissues and a towel. While I retched, I considered calling Bill and asking him to come home. I decided against it; I wanted the children to have their hour of normalcy. As the retching ended I lay on my side and put my head against the cold wood floor. I changed to pursed lip breathing.

I thought back to my therapy visit two days prior when I confessed that I couldn’t seem to use imagery. I am not a visual person. Perhaps it is because I have very poor vision and I learned at an early age not to rely too heavily on that sense. “I try to go to beautiful places that I have been, but I just can’t find any peace there,” I explained. I was relieved to learn that I didn’t have to go to a place. “Where do you go naturally?” he asked. “To a memory of being with another person, to a sweet moment in my life,” I replied. “Then that is what you should do,” he assured me.

I changed to diaphragmatic breathing to calm the physical storm. Closing my eyes I pictured Amelia and Aidan at the sink. I saw their little profiles: Amelia looking suddenly so much older and Aidan taller than I realized. I heard their sweet voices, in tune, singing together.

One top of spaghetti
All covered with cheese
I lost my poor meatball
When somebody sneezed

The fit ended. The children pulled me through it without ever knowing it occurred. How many times a day does it happen without me even thinking about it consciously? How many times a day do they pull me through -- the physical pain, the emotional pain, the unbearable retching, the loneliness – without ever knowing what they do for me?

Amazing Grace

2008-09-03T08:43:00.003-04:00

When I was in graduate school, I befriended a guy named Chris one day at the gym. I had been watching him while I was in aerobics class. He was riding an exercise bike and thoroughly absorbed in a magazine. I don’t know what made me so bold but after the class I walked up to him, “All those beautiful girls prancing around in front of you and you have your nose buried in a magazine?” He looked up at me, trying to figure out if I was being serious or not. “I’m just teasing you,” I answered. I wasn’t being coy; he wasn’t my type. I guess I was just trying to strike up a conversation.

Chris and I became fairly good friends and hung out together often. We had virtually nothing in common except for the fact that we both had degrees from UPenn. He loved UNC basketball; I was completely indifferent. But, I had nothing better to do, so I watched the games with him. Eventually I met Chris’ friends, most of whom were fellow doctoral students in the psychometrics department. And, through Chris, I eventually met one of the most important people in my life: Grace.

Grace and I initially met around 1992. No sparks flew; it wasn’t an instant friendship or anything like that. During that period of my life, I was very guarded. I did not know how to be myself here in the “Southern Part of Heaven.” I had yet to figure out how to finesse my Yankee personality into something that suited more civilized Southerners. And I was still nursing the broken heart that remained after my first long term relationship ended. So, with a few exceptions, I kept most people at arm’s length.

After adjusting to life in the South and spending some time in therapy, I was finally ready to “get a life.” Grace and I kept crossing paths through Chris, at church, and at the School of Public Health, where we were both students. Little by little we started to spend more time together, but it was a fledgling relationship at best.

Then my house burnt down.

While I was pulling my life back together, I temporarily moved in with one of my professors and his wife, who quickly became a dear friend during our morning coffee chats. At the same time, Grace was having serious problems with a roommate who had a slew of personal and financial problems that made things like keeping up her share of the rent problematic. Grace and I talked and we were both game to become roomies. So Grace facilitated her roommate’s transition to another housing situation, and I moved in.

Of course, all my belongings fit in one box so “moving in” took all of five minutes. I did have money from my rental insurance settlement, however. To show you how naive I was I felt rich because I had $17,000 in the bank and the clothes on my back. As Bugs Bunny would say, “What a Ma-roon.” Grace and I went shopping, “Ok, whatever you don’t have I’ll buy.” I don’t remember everything that we purchased that day but I distinctly remember buying a food processor and a 21” television.
It didn’t take long for me to realize that Grace was going to be the best roommate I ever had. And, shortly after we moved in together, we each vowed that we would be each other’s last roommate so that we ended that phase of life on a high note.

One day I was telling Grace a story about one of my married friends, “The way she talks to her husband. Man, if I were him, I’d tell her to go scratch.” “What did you say?” Grace looked at me, her big brown eye wide with excitement. I repeated myself. “You mean like ‘Go scratch your ass?’” she clarified. “Yeah,” I responded still not quite understanding her reaction. “I’ve never heard anyone say that in English,” she explained. I had heard the saying within my own family my whole life, but I never knew it was an Italian saying.

Looking back, I now realize that moving in with Grace was like finding my own personal Rosetta Stone. Grace, like me, was Italian-American. But her parents were from Italy so her connection to that country was not only stronger and deeper but something she truly understood. More importantly, my grandparents grew up about 30 miles away from Grace’s ancestral home so our families shared many customs and foods that I often didn’t have in common with other Italian-Americans. With Grace I discovered that many of my idiosyncrasies were deeply rooted in a cultural heritage that I only partly understood. And in our shared apartment I felt a sense of “home” that I had never experienced with anyone else, like I had found a missing piece of myself.

Grace and I enjoyed each other immensely. We made each other enormous gourmet meals. She coached me through my first (and last) at home bikini wax, an experience that left us rolling on the bathroom floor laughing at my complete ineptness. We were like sisters, completely at ease, running around the house half-naked and baring our souls with equal abandon.

I had a male friend over for dinner shortly after I moved in with Grace. He asked how the new roommate situation was working out. “It’s great,” I said, “We are so comfortable with each other we don’t even bother to dress half the time.” He called me a few days later, “Now why did you have to go and tell me about you and Grace running around naked?” “Why?” I asked. “Because now I keep having dreams about having a three-way with you guys,” he replied candidly. I didn’t know whether to be flattered or appalled. When I told Grace she responded, “Oh, I’m so flattered.” That’s Grace, she always takes things in the best way possible.

During the time that Grace and I lived together we were each dating the men we would eventually marry. Marco came along first and was delighted to have Bill come along and bring some “fat-full” food into the apartment with him. Two became four quite easily and we always enjoyed our times together, cooking, dancing, late night philosophizing, rollerblading, eating, hanging out, eating some more, …

Grace and I kept our shared vow. A few months after we each became engaged, Grace packed up her belongings and moved in with Marco. Bill, of course, claimed the space she vacated. But even he couldn’t lay claim to the part of my heart that will always belong to Grace.

Our lives took us in vastly different geographic directions. In 1998, Bill and I moved to California and Grace and Marco moved to Marco’s native Venezuela. Grace embraced her new life overseas the way she faces everything with a sense of humor and a sense of adventure. We stayed close via the phone and Internet and she remained very much a part of our lives. When Amelia was born there was never a question about her middle name. She would be Amelia Grace, after my beloved friend.

Our lives moved us here and there, we became mothers, we grew up and faced grown up problems like everyone else. And though we have always been separated by hundreds or thousands of miles, our hearts have remained juxtaposed.

Grace was here three weeks ago for business but stayed with us. She prepared wonderful meals – a marinated flank steak, a typical Venezuelan meal called pabellon of shredded beef, frijoles negros, and white rice; seared pork tenderloin with roasted potatoes and French green beans (from her father’s garden in Syracuse no less) – that I was happy to enjoy a few mouthfuls of. It brought back such happy memories of the nights we gorged ourselves together in graduate school. She helped with household chores, she held me through my coughing fits, she sat with me in my silence, and she laughed with me in the moments that Chester allowed me that indulgence.

I love her. I guess it is really that simple. I cannot imagine what my life would have been without her. I wouldn’t be me. She held an all-important key. It is amazing the difference that one person can make in someone's life and, my guess is, that each of us serves as this person for many people during the course of our existence. I guess that's why "It's a Wonderful Life" remains so popular; it reminds us that we are all important and essential to someone.

Flippin' the Bird

2008-09-02T13:45:00.004-04:00

As I have mentioned previously I love to cuss and my affection for cussing extends to cussing gestures, for which the Italians are known so well. Living in North Carolina, however, I am limited to the king of all cussing gestures: "Flippin' the Bird." Otherwise no one will know why I am biting my hand or running my fingers against the bottom of my chin and flicking them forward. Instead of getting an insult across with such obscure gestures, I will merely leave the impression that I am deranged.

I actually don't flip the bird very often. I almost never get angry in the car and, even if I did, I would never flip someone off. I am way to unlucky to take that chance. So the only person I ever flip off is poor Bill. Last night we were having a playful quarrel, one of those, "It bugs me when you do that" discussions that lacks any heat or passion. He made some wise-ass remark back and I flipped him off. The problem is that scleroderma has ruined my fingers: none of them straighten completely and I cannot hold the other four down so that the middle finger stands proud and tall. When I flip the bird it looks half-hearted. So I called out to Bill, "I still really mean it even though it doesn't look like it."

A Laundry List of Lessons

2008-09-01T10:06:00.002-04:00

I often marvel at the things I have to teach my kids. The overwhelming majority of our conversations involve repeated instructions about things that seem, to me at least, to be common sense: “Flush the toilet,” “Wash your hands … with soap,” “Put your dirty clothes in the hamper not on the floor,” “Clear your dirty dishes,” “Don’t interrupt me when I am on the phone,” etc. Either I am the world’s worst teacher or they are the world’s worst listeners or humans develop common sense very late in the game (and, judging by a few people I’ve met, some never do). I can only hope that, at some point, these lessons that punctuate the lives of my young children eventually sink in.

I often wonder if I will not have the opportunity to pass along many of life’s more important lessons to my children. In some ways, there’s a certain advantage to never having the chance to impart one’s wisdom along to somewhat less than appreciative recipients. While I may never have conversations peppered with admonitions, I will also not have to hear replies such as, “Mom, you already told me that” or simply the exasperated, “Mom!” with the accompanying eye-rolling. When my father imposes his advice, my canned response is “Dad, I’m not looking for an opinion,” which he generally accepts with surprising graciousness. Then again, he’s just that kind of person. My mother in contrast, dispenses with advice altogether, preferring threatening, cajoling, and guilting as her modes of behavior modification. She is an Italian Catholic, after all.

For my children, a laundry list of “Dos and Don'ts” may have to suffice, nicely preventing me from ever being called a nag (by my children at least).

To my dear children:
In the event that I am not available to dispense advice on an as needed basis throughout your life, I am taking this opportunity to share my thoughts on some of life’s lessons both grand and small. I hope that somewhere in here you find something useful. It is not an exhaustive list (the computer has only so much memory), but it should at least give you a foundation until you channel your own inner Buddha.

Love
1. If I had to share one great truth about relationships it is this: Be yourself. You simply cannot sustain a relationship in which you are trying to be someone or something that you are not. The sheer energy required by such a charade renders it implausible for the long haul. If you find that you are putting on an act for someone, it’s time to get off the stage.
2. Perhaps my biggest fear is that I will not be there to pick up the pieces when you first experience heartbreak. I wish that I could tell you how to survive the loss of a love without suffering, but I don’t think it is possible. Heartbreak is as much a part of growing up as potty training and losing baby teeth. I can tell you that heartbreak does not last forever and that eventually you will fall in love again. This is really all you need to know. When you are in the thick of it and you don’t know how to keep breathing, just keep reminding yourself: “I will not always feel this badly and I will fall in love again.” Keep getting up every morning, go to work or school, continue to have a social life, and it will get better.
3. Love is not butterflies though I highly recommend that experience. Love is enduring just as the vows state, “in good times and in bad,” “in sickness and in health, “for richer or for poorer.” I never dreamed that my husband would nurse me through 6 surgeries and 6 months of chemotherapy before our 7-year wedding anniversary. But he is still here, just as he promised. Don’t cling to the mistaken notion that it will always be easy or you will be sadly disappointed.
4. Hearts are fragile. Be gentle with your own as well as others. Don’t trust your heart to someone who is undeserving of it. By the same token, do not mistreat someone who has entrusted his/her heart to you.
5. People will fall in love with you and you may not return the feeling. Do not feel obligated to do so, but do treat them with dignity. You will fall in love with people who will not return the feeling. Accept their feelings and move on. You cannot make someone love you.
6. Marriage is not a lifetime commitment; it is a daily commitment. You wake up every day and say to yourself, “Today I am going to stay married.” There are days when this commitment will be easy and others when it will be hard. But the daily commitment turns into a lifetime.
7. Kiss your spouse good-bye when you part. Say “I love you” before you go to sleep. Not to be morbid, but no one knows when it could be the last time and you don’t want to regret missing that one last chance.
8. When your spouse loves your children more than they love you, don’t take it personally. You children will eventually become annoying teenagers and you will once again be numero uno (unless of course you have a dog/cat/ferret).
9. Two words: personal hygiene. No matter how much someone loves you, they are going to have certain personal hygiene standards. Let’s face it: we all wake up in the morning less than ready to face the world at large hence the terms “morning breath” and “bed head.” Invest in a new toothbrush frequently and use floss. In severe cases (you know who you are), use mouthwash too. Men, while you are at the drugstore getting some floss, invest in some grooming scissors and keep those nose hairs in check. And for god’s sake, trim the ear hair before it threatens to overtake the entire outer ear. Ladies, if your spouse really does not dig underarm hair and you have no strong attachment to it, shave it off regularly.

Sex (If my Roman Catholic mother reads this she’ll be mortified but here goes …)
1. Sex is a tricky issue. How you handle your intimate relationships depends on your own moral code. While I was raised to think sex should only occur in the context of marriage, that idea made little sense in a society where people postponed marriage until later in life. During my twenties, I had intimate relationships both with men I loved as well as men that I did not love. While the physical aspects of sex were satisfying in both kinds of relationships, I much preferred being in mutually loving and respectful relationships. I felt like I could be myself in relationships where I knew I was loved and cherished. I’m sure that many people would disagree, but I think sex is better with someone that you love.
2. Teenagers are too young to have sex. They simply lack the emotional maturity and presence of mind to appreciate the experience responsibly. I realize that this is an old-fashioned point of view; I don’t care.
3. Sex is not Love and Love is not Sex. The sooner a person gets this straight the better. For romantic teenage girls these truisms may help to explain why it doesn’t work well to try and get someone to love you by sleeping with him. If he didn’t love you before the sex, the sex is unlike to change that fact.
4. Don’t use sex to control people. This covers a lot of behaviors, including
a. Dating someone you don’t care about just to have sex
b. Having sex with someone because you want them to like you or you want to keep them with you
c. Having sex with someone as a conquest
d. Having sex to get pregnant without your partner’s consent
e. Forcing sex
5. Men need to shave before being physically intimate. There is nothing worse than making love to man whose face is abrading your skin.
6. Never underestimate the value of a shower before, after or in lieu of …

Friendship
1. Never leave a loving or kind word unspoken.
2. Friends make you feel good about yourself. For some reason it takes women years to figure this out and some never do.
3. Don’t invest in friendships with people with whom you do not feel comfortable. You should be able to be yourself with your friends.
4. People cannot give you what they do not have – time, sympathy, understanding, etc. – don’t take it personally and don’t waste energy getting angry about it.
5. One of the most essential phrases in the English language is “I am sorry.” You will make mistakes and hurt people. Be willing to accept responsibility for your transgressions.
6. Some friendships are meant to last forever while others are only meant to last for a time. Both types of friendship are valuable and it is ok to let go when the time comes.
7. First impressions are not always on target. I have often developed strong friendships with persons with whom I did not initially “click.” Remain open to people; you never know when that seemingly ho-hum person will turn out to be exactly the person you need in your corner.

Fear
1. There are two types of fear: the fear that protects you and the fear that paralyzes you. I wish I could advise you on how to know the difference. I just know that for me they feel different in my gut, and it’s up to my head to listen accordingly.
2. If you aren’t a little afraid at least some of the time then you aren’t living life to the fullest. To live fully you need to take chances, which requires being scared.

Illness
1. You know your own body better than anyone else. Trust your instincts.
2. No matter how sick you are, in all likelihood there is another person worse off than you are. On days that I want to feel sorry for myself, I think back to my year on an oncology floor. In that one year, I saw so many people suffer and I try to remember them and realize that what I am experiencing is not so bad.
3. Coal becomes a diamond only under pressure. Illness is an opportunity for spiritual growth, a shitty opportunity at times but an opportunity nonetheless. Try and garner what you can from it. And even if you never recover physically, your spirit can survive even as your body is decimated.

Education
1. Read. If you can read you can learn to do almost anything. Through books, you can visit places that you have never been or times that have long since passed. You can experience another culture and escape the everyday. And as C.S. Lewis once observed, you can also find that you are not alone.
2. Do not be afraid of failing. The only failure is in not trying. You don’t have to be the smartest or the best; you just have to want to learn.
3. Do not pursue a degree in a well paying field that you do not enjoy. You spend much of your waking life at work. You should do something that you love even if it means living in a smaller house and driving an economy car.
4. Learning does not stop when you receive your diploma.
5. Everyone has something to teach you whether they are an illiterate old man or a young child or a winner of the Nobel Prize.
6. Don’t judge people by their accents. When I went to college some of the smartest people I met had thick New York and Boston accents (not the Harvard kind). When I moved to the South I had to remind myself that a southern accent did not imply ignorance.

Religion/Spirituality
1. You only need three prayers: “Please help me,” “Forgive me,” and “Thank you.”
2. I believe the most humans crave the existence of the divine. Perhaps it makes us feel better to think that there is a universal benevolent force. Personally, I think we are all praying to the same God no matter what we call him/her or our prophets. Arguing theology is a waste of time; no one is every going to prove the relative or absolute veracity of their beliefs.
3. Whether you chose to join/remain a member of an organized religion is up to you. I am culturally Roman Catholic to the core. But I remained a churchgoer because in the Church I found some measure of solace, a sense of community, and a basis for my own moral code. I also found many of the teachings maddening but, fortunately for me, Roman Catholicism works cafeteria-style.
4. Life isn’t perfect and it isn’t fair. God did not “do” anything to you as a punishment or a reward. Bad things happen; good things happen. It’s unbearable to accept this as true but I honestly believe that it is. God may not be able to take away what pains you – physically or emotionally – but he/she can be with you as a spirit or a fellow human being in your hour of need.
5. God resides within you: act accordingly.

Food Nazi

2008-08-30T10:23:00.003-04:00

Over the past several months there have been times when I have not been able to do even the few things that remain my family responsibilities. One of my remaining jobs is ordering the groceries on-line at Harris Teeter where my husband then goes and picks up the filled order at a designated time.

During the weeks I was unable to fulfill this responsibility, I noticed that the house was suddenly filled with previously forbidden foods, mostly "sugar cereals." There were Apple Jacks and Fruity Pebbles, Froot Loops and Corn Pops. I finally felt compelled to raise the issue with issue with Bill.

My mother calls me the Food Nazi because she thinks I am too strict with the kids about what they can eat. I admit that I have issues with food. I prefer for the kids to eat the least processed foods possible; I'd rather make the cookies, cakes, and pies myself than buy them. That way I know what it is them. And I do believe the best philosophy is "All things in moderation." But my definition "moderation" does not translate into daily consumption. Sweet cereals are fine as a treat when my parents want to spoil them but every day is too much.

The sugar content bothers me but what really troubles me is the colors. In nature bright blue means, "Don't touch." Bright blue makes me think of poison tree frogs. Of course one could argue that mangoes, apples, and banana are colorful but they aren't neon, and they don't turn your poop different colors (although when I fed Amelia blueberries as a baby it looked like she had pooped a smurf). So I'll admit my reasoning is not fool-proof.

I asked Bill not to buy the cereals, which I realize is especially difficult if he gets stuck dragging the kids along to the store with him. So I renewed my vow to order the groceries once a week. Yesterday I called Bill at work to make sure I had everything on the list. He reminded me to get cereal. What do you want? "I want Honey Nut Cheerios and the kids want sweet cereals," he replied. "Hadn't we just talked about this," I thought, "Bill, they cannot eat sweet cereal every day. I'm not ordering them." I longed for the day when I had the strength to make Aidan's oatmeal from scratch every morning and felt like he was eating a really healthy breakfast.

I can just imagine the dramatic transformation that will occur in my pantry when I am longer around to piss and moan about Bill's purchases. But as long as I still have the strength to do so, I will try to continue my reign as the Food Nazi.

"Love You and Miss You, Mommy"

2008-08-29T10:16:00.007-04:00

I spent my morning finishing the birthday cards that will accompany the children's future birthday gifts. I bought each child a birthday gift for every birthday between now and age 18 plus a gift for their high school graduation. I stopped it there because I had to stop somewhere and 18 seemed like a natural endpoint. I still have two more gifts to wrap for Amelia, my watch and my diamond earrings. I was waiting on those in case I wanted to wear them again but I don't really need them and I'd rather have them ready just in case I get blindsided by death sooner than I expect. I have one more gift to buy for each of them and this heartbreaking task will be done.

It was hard to write the cards. As I got further away from the present I realized I was writing to people I did not know, people I would never know. I can imagine the teenagers and the adults that they might become. I can see Amelia as a mother with at least three kids who works part-time as a vet or a pediatrician. That's her current plan and I can see that in her now as a nine year old.

Aidan is a bit more of a puzzle. When I watch him build with his legos, it's hard not to imagine him as an engineer or architect. In his first grade class, the students were supposed to draw a picture of themselves in their future career. Aidan drew himself and wrote, "I don't know what I want to be when I grow up." And surrounded the figure with question marks. I think it's healthy that he is keeping his options open. And like most boys his age, he never indulges fantasies about being a husband or father. Though I suspect that someday he will be one rough-and-tumble dad.

I know the career ambitions of children morph a lot along the way. My first plan was to be a cookie. Seriously, if you asked me as a toddler what I want to be when I grew up I answered, "A cookie." I guess at some point I realized that was not an option. I remember wanting to be a special education teacher for a long time because I wanted to work with children with Down's syndrome. After I started doing community theater I wanted to be an actress but my dad made it clear that he would not pay for any college education involving a theater arts degree. I don't know why I picked nursing. It was safe, easy to get a job, practical. The problem was I hated it as my college major. I swtiched to an undeclared major for a semester and discovered economics but when I looked in the help wanted ads, there were no positions for economists. My working class view of the word got the better of me and I went back to nursing. I finished my degree and became a pediatric nurse.

My initial instincts were correct: I didn't like being a nurse. I didn't mind the patients or the families, but I hated the way many doctors assumed I lacked intelligence and was beneath them. Few recognized that the nurses often knew far more about the patients than the doctors did. I lasted two years, during which I also received my Masters in Public Health. From there I started my doctorate in Health Policy and Administration and, there, I finally found something I really enjoyed. I liked the research and teaching aspects and found the field fascinating. So, in a very round about way, I found a career that was perfect for me.

So. knowing all this, I suspect my own children may end up far from where they intend to be at the outset. Of course they may be like Bill, who has always wanted to be a doctor. In fact, he won a state science competition with his work on antibiotic resistance when he was in high school. He apparently took the direct train to his infectious disease specialty.

As I wrote the cards, I tried to think back to myself at different ages of my life and came to the conclusion that I have always been, more or less, the same person. There were years when I was a little more withdrawn and self-conscious but they were few. For the most part I have always been outgoing, friendly, honest to a fault, talkative, introspective, stubborn, and bookish. I think I have changed very little; I have merely grown older and, hopefully, wiser.

But I know it doesn't always work this way. Sometimes people change drastically. And I cannot help but wonder what an early curve ball -- like losing your mother at a tender age -- can do to someone's psyche. So I have no idea to whom I am writing: my happy go luck girl and my willful, sensitive son or two people who do not yet exist.

I wrote the cards out, explaining the gifts. Some, like a set of Encyclopedia Brown books, needed only the simple explanation of how I loved them as a kid and always wanted to figure it the solution before the mystery was revealed. But others, like watches, had a double layer of meaning. Yes, they were nice timepieces but they were also reminders of the precious nature of each moment and the finiteness of our lives. I encouraged them both to use their time wisely at jobs they loved and with people they cherished. In some cards I wondered aloud about what they were doing, "I wonder if you still play soccer? Do you still do gymnastics?" I told them I hoped they were enjoying middle school and high school. I told them I hoped they were happy but that when they were unhappy they should remember that it does not last forever. Happiness always returns, but sometimes it runs like the Italian train system, a little behind schedule.

I didn't want the cards to be sad, but in a few I told them I wished I were there to stroke their cheeks and hug them again. And I assured them that I am always with them. I signed each card, "Love you and miss you, Mommy."

I hope the gifts are the right thing to do. I picture them blowing out the candles on their cakes over the years surrounded by their friends, happy and laughing. Part of me fears that going to their little nest to pull out "Mom's gift" will actually ruin an otherwise happy day. I hope that opening them each year will not feel like ripping the scab off a fresh wound causing it to bleed again. I don't want the gifts to pull them down; I just want them to know how much I loved them and how much I wanted to be there on the day that commerorates their entry into this world.

I'll have to be sure to let them know that the choice to open the gift is theirs. They needn't feel obligated if it hurts too much. The gifts are there, whenever they need a little reminder of me to hold in their hands or whenever they need to read my script across white card stock. It doesn't have to be on their birthday if that would ruin it for them. Perhaps they never have to open the gifts if it hurts too much. Because I don't want to make their grief last any longer than necessary. I just want to still be with them someway, somehow after I'm gone. And maybe that is selfish of me ... maybe I need to let them go without trying so hard to stay behind.

My Broken Heart

2008-08-28T14:03:00.005-04:00

So I mentioned last week that I had an echo and everything looked "normal." As it turns out that is not the case. Bill has a friend who is a very smart pediatric cardiologist, the kind of doctor who actually thinks which is unfortunately rare. After the echo, Bill and I were confuse. If the echo is normal why do I feel so badly and why has my heart rate increased so much over the past several months. That along with some other symptoms and occurances -- the severity of the embolism episode, a history of fainting spells, and the fact that I can breathe more easily when I squat -- made us wonder if I had a common congenital defect that no one had picked up on a previous study. The defect is called a patent foramen ovale (PFO) and about 25% of the population has one to no ill effect.

So today I was the oldest patient at the Duke Children's Hospital. All those health services researchers out there using claims data, not all those "out of range" values on your data are errors! I had another echocardiogram done but this time they injected "agitated saline." They watched the bubbles on the echo to see if they pass from the right atrium to the left atrium. I had some pass and they passed late so the idea of a PFO is less likely. The cardiologist did say he is still suspicious that it is there but the amount of shunting from right to left, if it is there, was small.

But the echo was not normal. In fact there are several changes from the last two echos that suggests that there is an actual cardiac problem rather than my heart compensating for my crappy lungs. My heart rate has increased a great deal, the electrical rhythm of the heart has changed and there is evidence that my heart is not able to fill adequately. It is unclear whether the sac around the heart has tightened and needs to be removed or if their is a problem with the heart elasticity. I must say it was impressive to listen to the cardiologist think aloud. It's rare that I meet a really smart doctor, one who knocks my socks off, but this one did just that.

I don't know whether to be happy or scared. I'm going to need another cardiac catheterization, but this time it's the full deal left and right sides of the heart. Depending on what that shows, I may also need an MRI before we can figure all this out. So I am back in panic mode.

A Life in Books

2008-08-27T11:23:00.002-04:00

Those of you who read Newsweek may have noticed their "A Life in Books" column where they ask some luminary to list their five most important books. Last week they interviewed Jonathan Kozol. Forgive my ignorance Mr. Kozol, but I have no idea who you are. The brief bio described him as an activist and a National Book Award winner. So I decided that I have not read enough classics and that I would start with Mr. Kozol's list. The first was Faulkner's "The Sound and the Fury." I usually give a book 50 pages to grab me and, if it fails to do so at that point, I give it up. I lasted 20 pages with "The Sound and the Fury." Maybe it gets better but I figure life is, literally, too short to trudge through an unenjoyable book.

The second book he listed was "The Power and the Glory" by Graham Greene. Bill accompanied me to the library last week and I discovered that they did not possess this particular book. By some luck they did have "The End of the Affair," which I thought an acceptable substitute given that Greene authored it. I am enjoying it thoroughly. I do find myself speaking in a rather peculiar manner these days and I have been craving afternoon tea and scones.

So I haven't gotten to the other three books on the list yet ("The Souls of Black Folks" (DuBois), "The Bothers Karamazov" (Dostoyevsky), and "Collected Poems" (Yeats) ). Yesterday I started to think about what my own list would include. So here it is.

1. The Prophet (Kahlil Gibran) : To my mind, the sagest book ever written. I return to it time and again and find peace there. It is my Bible.
2. Animal Dreams (Barabara Kingsolver): This was the first book I read as an adult in which I felt overwhelmed by the emotional depth and intellect of a female writer.
3. Why Bad Things Happen to Good People (Harold S. Kushner): My friend Angela bought this book for me when my house burnt down. More so than any other book or person, it helped me to reconcile my hope for a benevolent God with the realities of the human condition. I found and continue to find the idea of an impotent God (or at least not omnipotent) comforting in some perverse way. It allows me to believe that there is a benevolent force that exists to love and comfort me even if it cannot take away my suffering.
4. The Red Tent: A thoroughly enjoyable work of fiction that embraces all that is wonderful about women and the profound relationships among women. Any book that can make you understand the upside of polygamy (in ancient times) is worth a read.
5. Bird by Bird (Anne LaMott): Bill always indulges my fantasies. When I was in graduate school and harbored a secret desire to be a caterer, he bought me a book on catering. When I got into photography, it bought me books on photography. When I started writing, he bought me LaMott. The premise, that we all have a story and that any on who writes is a writer regardless of whether or not they get published, inspires me every day. I am indebted to LaMott for giving me the courage to think of myself as a writer.

Honorable Mention
6. Interpreter of Maladies (Jhumpa Lahiri): An amazing collection of short stories. Her fiction is so incredibly real.

So what's your top 5? I'd love to hear them. I am always looking for a good read -- now more than ever.

Dirty Little Secret

2008-08-26T10:19:00.005-04:00

It's hard to admit to the feelings I share in this post, but I think many mothers have these feelings sooner or later. As I tell my children, "I am your mother, but just like you I am a human being with my own feelings and flaws." I think we mothers sometimes forget that we are not superhuman.

When Aidan was half way to his third birthday, he committed a minor infraction that earned him some alone time in his room. He refused his sentence and, as I carried him up the stairs to enforce it, he pulled my hair so hard that he gave me a subgaleal hematoma. For six weeks after the incident, I had swelling over most of my scalp and sharp pains that radiated down my left arm. To this day, the skin on the while left side of my head is extremely sensitive. In the days immediately following the incident, I was very angry with him. But I knew that he had no way of understanding the potential consequences of his actions and he was very sorry for what he had done. So, I obviously forgave the little guy and moved on.

Unbeknownst to me at that time, this incident was the first in a long string of Aidan’s attempts to inflict pain and one of the more successful ones. Looking back, I realize that Aidan was always quick to show his emotions physically. When I needed to wean him to go on chemotherapy, he fought it, biting my breast and crying. He bit other children at school and his older sister whenever he was frustrated or angry. Even when he began speaking he preferred to express his emotions with every part of his body except his vocal apparatus. Doctors insisted that he was a normal boy with perhaps less impulse control and more intense emotions than average. “Make sure his rested and fed, give him a lot of praise when he is good, and firmly correct him when he acts out,” we were told repeatedly. We did all those things and more. We tried behavior modification, reasoning, yelling, crying, threatening, and (very briefly) spanking. Nothing seemed to work. By age 5 Aidan no longer bit but he threatened us physically with whatever was nearby – knives, knitting needles, pens – while we stood there helpless. Nothing in my life had ever stymied me the way handling Aidan’s outbursts did.

My dirty little secret is that some days I didn’t like Aidan. Three years into dealing with his behavior on a daily basis, I felt like I was always walking on eggshells and never knowing when something minor – like the night’s dinner menu -- might launch another one of his tirades. I dealt with at least one tantrum a day. Some lasted only 5-10 minutes, but many lasted hours and left me unhinged. One day I was particularly ineffective in halting his inappropriate behavior. I retreated to the living room to pull myself together. He followed me there, climbed into my lap, and slapped me – softly – as if to say I can hurt you if I want to and there is nothing you can do about it. I jut sat there detached; the only way to cope was to feel nothing lest he see that he could reduce me to an uncontrolled mess of tears. There were days when I want to put him into the car, drive to a remote area, and leave him there. What kind of mother feels that way? And to whom can she admit such horrible thoughts?

Aidan’s struggles left me questioning not only my parenting skills but also my capacity to love. What were the bounds on “unconditional love? At what point did self-preservation trump parental devotion? Exactly how much can you let a child hurt you when before your own humanity demands its rightful due? Can you love a child that you do not like much of the time? I want what is best for my children, but I cannot care for them if I cannot care for myself. Like they say on airplanes, “Secure your own oxygen mask first and then secure your child’s.” If I allowed my son to treat me like his whipping boy and still come back for more, what was I teaching him? Would he grow up to believe that he could treat women badly and expect them to love him anyway? And was I teaching my daughter that sometimes love hurts and you just sit there and take it? Were these the valuable lessons that my “unconditional love” conveyed?

“I love you Mommy,” he said from his carseat after a particularly bad morning that included threatening me with knitting needles and repeatedly banging his trampoline against the door after being put in time out.” “Really?” I replied with an air of dismay “It’s hard to tell that from the way you treat me, Aidan. The way you treated me this morning? That is not love. That is NOT how we treat the people we love.” “Fine,” he replied then added viciously, “I guess I don’t love you then.” I sighed, “I guess not.” He apologized later that day and, I’ll admit, I had to force myself to accept it because I know that it is my responsibility to teach him not only how to behave but also how to forgive. So no matter how much or how often he hurt me, I had to keep coming back to him. I had to teach him to manage his feeling and express them in other ways because if I surrender this responsibility, there would be no one else to do it. But there were days when I wondered how long I would be able to keep forgiving him.

Aidan had been seeing a developmental pediatrician, but a year into therapy Aidan’s outbursts were becoming increasingly violent. At one visit my eyes filled with tears as we discussed the situation. The doctor raised the possibility that I needed anti-depressants. “Anti-depressants,” I thought to myself, “I’m not depressed: I’m Italian-American. We emote.” I didn’t need drugs to “take the edge off parenting” as the doctor had suggested; I needed skills to teach my child to behave.

On the advice of our general pediatrician, we sought the care of a psychologist. During our two visits she probed every nuance of Aidan’s personality – his sensitivity to smells, clothing tags, and loud sounds; his persnickety approach to food and clothing; his boundless energy – and determined that he likely had Sensory Integration Disorder. She referred us to occupational therapy where they confirmed the diagnosis. For the next four months, Aidan attended weekly one-on-one therapy sessions where he learned to regulate his behavior. My once impossible little boy learned to express his emotions verbally. He started saying things like, “I feel very angry and I want to hit something” and “I’m in a bad mood.” His tantrums and physical abuse waned substantially. I learned to help him cope with his negative emotions. The decibel level in our household plummeted, as did our stress levels. We started to find even keel.

While Aidan’s difficulties are no longer as severe as they once were – he’s largely ceased threatening family members with the nearest potential implement of destruction – he continues to struggle with those strong emotions of his. His threshold for frustration and discomfort of any kind are terribly low. On a good day, he removes himself from stressful situations, but on a bad day he just turns bad to worse.

On Saturday evening he was growing increasingly restless on the trip home from Philadelphia. He continually hit Amelia with the seat belt. Our friends, Greg and Dave, who graciously gave up their Saturday to pick up the kids so that Bill could stay with my puffy self, were growing increasingly frustrated and running out of options. Greg finally turned around and firmly told Aidan that he had to stop hurting Amelia immediately. Fortunately it worked because they probably wanted to pull the car over and just let the kid out on the side of the highway.

When I heard about the ride, I told Aidan to go upstairs and get ready for bed. I also told him he could not participate in our family weekend ritual: sleepover in Mommy and Daddy’s room. He started to unravel and yell at me. He tried to get me to commute his sentence. I refused to yield and walked away.

When I joined him upstairs he was brushing his teeth and crying. He can out of the bathroom and lobbied unsuccessfully one more time. When I again refused he cried, “I am so disappointed” and threw himself on the floor. “I know Buddy, I know you are disappointed but there is always next week,” I assured him. I left him alone, which, Bette Davis like, solves a lot of Aidan’s emotional crises. Shortly thereafter he picked himself off the floor and crawled into bed. I went into to sing his lullabies, "I'm proud of what you did out there. You told me how you were feeling instead of yelling and hitting. You did a good job pulling yourself together." He happily listened to his lullabies and drifted off to sleep.

I walked back to my room and tried to shake off the anger and frustration welling inside me, “Why does he have to be so difficult?” I thought. But then I looked over at Amelia. Amelia could have been born in the jungle and raised by apes and turned out fine. She came with the easy child program installed (although I think the warranty expires at age 11 or 12), but Aidan is a more challenging model. Mothering Aidan has demanded a lot of me. I hade to learn to be at my best with him to deal with his ever-changing moods, to walk away in he heat of the battle, to accept that some battles are simply not worth fighting. Most importantly, I had to make him aware of the feelings that lay beneath his physically intense outbursts, which demanded that I be aware of my own psychological motivations.

It is hard to admit that on particularly bad days, I sometimes wish Aidan away. He can be that difficult, that infuriating. But he can also be incredibly sweet, spontaneous, and loving. Like all of us, he had his vices and his virtues. So we continue to muddle through, he and I. We both practice using indoor voices and “I” statements, we both take responsibility for our mistakes, we both say “I’m sorry,” we both try to listen better. He has demanded so much of me and forced me to become not only a better mother but also a better human being. And I suppose that makes the struggles worth it. Surely we are here to teach our children but I think it is equally true that they are here to teach us.

The Land of the Living

2008-08-25T08:51:00.003-04:00

This last week was physically pretty miserable. The experimental drug that I started one the previous Friday caused an enormous amount of edema. On Monday, I weighed 85 lbs. By Tuesday morning I weighed 88 and one Wednesday I weighed 89.5 lbs. Four and a half pounds of water weight in 2 days is a lot on someone my size. My feet, which my Dad calls Freddy Flintstone feet because they are short and wide like squares, looked like cubes on Friday night. Everything was swollen, even my backside. In addition to the edema, the drug caused a great deal of musculoskeletal pain. So nights were pretty painful.

But there was an upside to all this: the emotional fallout that usually accompanies my physical downslides didn't materialize this time. I was calm and peaceful despite the discomfort and the very real possibility that the edema could be a harbinger of doom. I don't know where this serenity came from but I welcomed it as a pleasant change of pace.

I've noticed subtle changes in me over the last few weeks that suggest that I am beginning to accept this new life of mine despite its frustrations and limitations. Months ago I stopped reading newspapers and magazines because I couldn't deal with anything beyond my own little world. Two weeks ago I read Newsweek cover to cover for the first time in over four months. Then I started to wonder where my New York Times had gotten to. I used to spend an hour reading it every morning, but as my illness worsened I just threw it in the recycle been without so much as glancing at the headlines. Suddenly I felt like looking at the pictures and maybe reading a headline or two. But the paper hadn't landed on my doorstep in nearly three months. So I called them, "I haven't received my NYT in three months. Do you know why?" The person on the other end of the line must have thought I was crazy, "You stopped in on May 28th." I have no recollection of doing this but the date coincides with when I had my feeding tube removed. While I didn't restart it, I thought it was a good sign that I actually cared to know what had happened to it.

Last Thursday was the Meet and Greet night for the new school year. The kids were in Philly with my folks so Bill and I went alone. It was my school debut in my new wheelchair. I was nervous, assuming the kids would shy away from me and the adults would be immobilized by that mixture of pity and uncertainty that seems to make us all backpaddle from awkward situations. But I underestimated everyone. Teachers and fellow parents greeted me warmly, many sinking down to "my level" to converse and inquire about how I was feeling. Two children in particular made my day. Alex, a boy I tutored last year until I became too sick to continue saw me in the hall. "Miss Michelle!" he yelled and came over to me. This boy tugs at my heart in a way I cannot explain. He is sweet and shy and simply adorable in his blond crew cut. I was so happy to see him and, without thinking, I opened my arms wide to hug him and he just hugged right back. I asked about his summer and he excitedly told me about basketball camp and meeting some of the Duke players. "Oh, I know you just loved that!" I responded. I was happy to learn that he and Amelia had the same teacher and that I would see him again this year. Later, a little girl in Amelia's class who I helped with her reading when she first arrived from Mexico, stopped me to say hello. We chatted about her summer and she told me about her mother's birthday party. I told her I was glad she was in Amelia's class again and I would be seeing her soon. These two kids acted like being in a wheelchair was "no big thing." To them, I was still "Amelia's Mom," the same person just sitting down. And they helped me to see it that way too. Before I left the school I made plans with the librarian to volunteer on my good days. She assured me that someone would meet me at my car to help with the wheelchair so it was as easy as possible for me. And I felt excited to have an opportunity to have some sense of purpose and a way to get out of the house once in a while.

Last night I read a French magazine to practice my pitiful French. I had been studying daily until the feeding tube fiasco started then, as time went on, mastering French seemed like a strange idea for a dying woman. But last night I got half way through the magazine getting the gist here and there. I've been paying for on-line Rosetta Stone lessons for the last 6 months and I don't think I have gone once. Maybe today I will start again.

Today I woke and quickly did my chest percussion vest. This is a vest that vibrates very quickly to loosen the secretions in my chest so that it is easier for me to cough them up and I don't have to retch violently four times a day. So far, it seems to be helping. I still cough but I am not vomiting as much. After my 20 minute "Good Vibrations" session, I quickly dressed and ate my token soy yogurt (20 years later I still miss the real thing), and went outside with the kids to wait for the bus. I took photos to commemorate their first day of school as I do every year and waved good-bye as they drove away. I don't think I have waited outside with them since last fall.

I seemed to have rejoined the land of the living albeit in small doses and small ways. I know now that my old life is gone. The Michelle that darted from one activity to another with boundless energy no longer exists. I think of my old self as a hummingbird, colorful and busy, flapping it's wings wildly and darting to and fro sucking every last bit of juice out of life. I liked that version of me and I do miss her but she simply doesn't exist anymore.

When I first moved to North Carolina, I was a huge cyclist and I spent many an hour riding in the rural areas around Chapel Hill. On those rides I used to watch the hawks above me, awed by their grace and ease. There I was furiously peddling to move forward while these birds of prey just seemed to glide effortlessly with the air currents, watching and waiting for something worth the energy expenditure. Now I realize I am like the hawks, minus the gracefulness, watching and waiting and discovering that joy and love and happiness are all still available and I don't have to chase after them or create them after all. I just have to be patient and aware and these happy moments will come.

Paris, Je t’aime

2008-08-23T12:23:00.001-04:00

Four years ago, we spent three months in Paris while Bill worked at the Pasteur Institute. Our time there exceeded even my greatest expectations and I hold those memories very dear to my heart. At the time Amelia was nearly 5 and Aidan was 3. I spent my days taking them all over Paris, usually to one of the many parks. I even braved a few museums with them, including the Picasso where Aidan came dangerously close to touching a painting while the guard yelled, “Madame!”

Every Wednesday we went to story time at the American Library, which is just a few blocks from the Eiffel Tower. Aidan, future engineer and admirer of symmetry that he is, had to visit the Eiffel Tower weekly. So, after story time, we grabbed fixins for a picnic lunch on the Champs des Mars in the shadow of the Eiffel Tower. Aidan walked along the streets of the 7th arrondisement carrying a baguette as long as he was tall, gnawing at it along the way. Amelia and I always waited until we reached the “pelouse au repose” [As opposed to pelouse interdit, which means “Don’t even think about walking, sitting, reclining or otherwise disturbing the lawn.”]

Someone once told me the French invented childhood and my time there with the children lends credibility to this theory. We shared an incredibly happy three months together there, even though Aidan was in his terrible threes and I made things worse by refusing to by an overpriced French stroller. Our life in Paris remains one of the leading contenders for the happiest periods of my life.

Aidan does not remember our time in France, but Amelia remembers it surprisingly well. Since our return she has told us repeatedly that she intends to study French and spend her year abroad in Paris. As a special treat, she and I planned to go to Paris last spring to visit and travel with my friend Courtney and her daughter. Unfortunately, my worsening illness forced us to cancel the trip. Amelia was disappointed but amazingly mature about it. At the time we viewed it as a postponement, but I now suspect that the trip will never take place, at least not with me as her travel companion.

A few weeks ago I rented “Paris, Je t’aime” from Netflix. I watched it on a Sunday when I was not feeling very well. I was having a hard time dealing with the fluid increase that occurred when they increased by daily calories in the TPN. So I had swelling in my feet and arms as well as symptoms of pulmonary edema, which made it hard to breathe.

The movie is a compilation of 18 5-minute films, each by different directors and set in one of the 20 Parisian arrondisements. Watching the compilation was bittersweet for me, in part because many of the films have some degree of sadness. But most of my sadness lay in the realization that I will likely never again visit that lovely place. “But you spent three months there,” I reminded myself, “Just be grateful for that.”

Two of the films touched me especially. I am going to give them both away so if you don’t want to know about them, stop reading here.

In one of the films a young women wakes early and carries her bundled baby, via public transport, to a barren daycare where dozens of cribs are lined in rows. Her boy starts to cry as she leaves and she sings the following lullaby to him with love and sadness in her eyes.

Qué linda manito que tengo yo,
(What pretty little hands have I)
qué linda y blanquita que Dios me dio
(How pretty and white that God gave me)
Qué lindos ojitos que tengo yo,
(What pretty eyes have I)
qué lindos y negritos que Dios me dio
(How pretty and dark that God gave me)
Qué linda boquita que tengo yo,
(What a pretty little mouth have I)
qué linda y rojita que Dios me dio
(How pretty and red that God gave me)
Qué lindas patitas que tengo yo,
(What pretty little feet have I)
qué lindas y gorditas que Dios me dio
(How pretty and chubby that God gave to me)

The mother leaves her baby and travels a long distance via metro and bus to her employer’s home. Her employer tells her she will be home late that evening, “You don’t mind, right?” Of course she minds but what is she to say? Then a baby cries and the women goes to the infant and sings the same song, this time with affection but not love. And I ached for her and all the women who leave their children not of their own volition but of necessity. That lullaby played in my head for days, breaking my heart every time.

In the final film the main character, a postal worker from Denver, walks through Paris while she narrates via voice-over in her American accented French about her Parisian vacation. Throughout the film she seems like such a lonely soul, missing her pets at home, eating alone, walking alone. In the final scene she pensively sits on a park bench eating “un sandwich” and observes the scene around her. In her narration she talks about how in that moment she experienced something that she had never felt before in her life: joy and sadness at the same time, but only a little sadness. She felt, “vivant.” [alive]

One thing that struck me about the few French people that I got to know during our time there was that they seemed much more willing to admit to specific losses in their lives and sadness in general. I think we Americans are much more closeted about our emotional pain perhaps that is why we are such a violent culture, the feelings have to erupt somehow. Over the past several months, as I have admitted to my own struggles with my illness and the accompanying emotional consequences, many people have opened up to me about their own emotional struggles. I was astounded to learn how many people I knew struggled with depression and grief for, literally, years without saying much about it to anyone. Now the phrase “walking wounded” seems much for accurate to me. I realize now that we all have hearts that are at least a little broken. Perhaps that is the human condition. What is truly amazing is that we march on, broken hearts and all, though our lives. We continue to live and love and laugh with our fragile little hearts, running the risk of further pain on a constant quest for joy.

The Queen of the Low Probability Evenet

2008-08-22T16:00:00.003-04:00

So my heart is totally normal, leaving us (Bill, the docs, and me) all standing around scratching our heads. The weird thing about the edema is that is is worse on my left side, which calls the central venous catheter, the line through which I get my TPN, into the line-up of suspects. The line was not in the right spot a few weeks ago when we checked it by X-ray but since it was infusing fine, we left it alone. Now we wonder if the problem is that it is in too small of a vein or there's a clot somewhere. There was no way the problem was going to get resolved on a Friday afternoon so my guess is that I'll be getting a new line next week. Fortunately, it's easier to replace a line than place one de novo.

I swear my body just sits around dreaming up weird outcomes just to keep us all on our toes.

Have a good weekend!

Wishing and Hoping and Thinking and Praying

2008-08-22T12:56:00.002-04:00

Unplanned second post for today ... and not for a good reason.

The swelling hasn't gone away after three days off the Gleevec. I'm off to get an echocardiogram. Whichever of the above four that you do for people in need, send it my way at 1:45.

Michelle

It’s a Long Story

2008-08-22T09:40:00.001-04:00

I promised I’ll get to my ultimate point today; I’m just taking the long route to introduce you to one of the funnier characters that was once a part of my life.

My freshman door was co-ed. Thank goodness for this because coming from a testosterone filled childhood home I don’t think I could have done well with an estrogen dominated dorm. I needed men in my life to make me feel at home. When I moved into my room I noted that my roommate and I were surrounded, three rooms of guys on one side and three rooms of guys on the other. Clearly I was destined to be outnumbered by members of the opposite sex.

Mary Ann, my roommate, and I went to dinner the first night with roommates from a few doors down, Mac and Quentin. Our names alone revealed the huge distances between our pairs: Mare and I from working class Philadelphia and Mac and Quentin from well-to-do families and country club life. But we had fun that first night and many others, ending each meal with “food art” session where we took all our leftovers and made them into a conceptual art piece before sending it to the dish room on its tray.

Mac was the first person I met born with a silver spoon in his mouth, except that it wasn’t just a spoon it was an entire place setting. Mac was old money; he didn’t flaunt it. But all his clothes were from Brooks Brothers and he had the latest and greatest of every gadget. He had traveled extensively and been places that I could only dream of seeing. One day he glanced at my brand new boom box, of which I was so proud, and asked, “Why don’t you have a CD player?” CD players were a novelty at the time and expensive. “I can’t afford one, Mac” I answered, “”My family doesn’t have that kind of money.” He wasn’t judgmental; I think he was just naïve.

A couple months into the year Mac and I were eating dinner together, just the two of us. I took my fork in my right hand and stabbed my meat and proceeded to saw it with my knife in my left hand, butchering it as if it had not yet been slain. “What are you doing?” Mac cried.

“What?”

“Ok, I have to tell you this. You have the worst table manners I have ever seen. You eat like a Neanderthal.”

Mac was a Classics major so I new he spent his days studying ancient civilizations but I seriously doubted he knew anything about the eating habits of Neanderthals. Nonetheless, I was willing to hear him out.

He took my utensils away. “First of all, put your napkin on your lap,” he instructed. “Now, pick up the fork in your left hand, turn it over and place it gently into the meat,” he directed. “Take you knife in your right hand and place it in front of the fork. Now, cut gently.” The lessons continued. I learned about place settings, placing my knife and fork at 4 o’clock to show that I was finished with my meal, dipping my soup spoon away from me (which I refuse to do because it makes no sense), and much more. To Mac’s credit, he did this with great kindness and affection, which was wholly uncharacteristic of him.

Mac was an incredibly funny person. He could impersonate half the people living in our suite on cue, going from one personality to another. He had a great shtick of Elvis singing songs by various rock bands. He would launch into Elvis’ rendition of Bon Jovi’s “Dead or Alive” or the Doors’ “Do You Love her Madly.” He constantly had me in stitches.

Mac also had a favorite pastime, making prank phone calls. When I took American Folklore my sophomore year, I decided to do my folk-art collection and analysis on prank phone calls. I had a decent amount of fodder from my escapades with Marie and Sue and I added to our work by interviewing other students. Then I went to Mac and discovered that he had hours of prank phone calls on tape. I had hit the mother lode. I dutifully transcribed the tapes and interviewed Mac about the calls. I entitled the paper something to the effect of “Prank Phone Calls and American Teens: A Durkheimian Analysis.” Doesn’t that sound like a loud of academic B.S.! My hypothesis was that prank phone calls were a deviant behavior that cemented adolescent friendships. Sort of like being a foxhole together except that it was fun. My professor loved it, gave me an A, and asked me for a second copy.

Mac and I continued to be friends throughout college and then both happened to enroll in graduate school at UNC in law and public health, respectively. We made a deal fall semester to have a steady dinner date every Saturday night unless someone with real romantic potential were to turn up suddenly. Under such circumstances, we were each free to break the standing date. After a couple months I started dating someone casually. Mac and I continued to hang out and Mac started calling him my “cuddle man.” “Why don’t you sleep with him?” Mac asked. “I hardly know him,” I responded. “So he is just content to cuddle with you? That’s weird,” Mac observed. “You eat dinner with me every week and don’t get anything. Perhaps I have some other redeeming qualities, huh? Ever think of that?” That was the end of that debate.

After graduation, Mac worked for a year and then decided to move to Prague. I went to visit him a year later and spent three weeks using his place as home base and touring around Eastern Europe. Mac was as fun and funny as ever in his new home, surrounded by a supporting cast of eccentric young ex-pats.

Prague is a lovely city. Virtually untouched in WWII, it’s buildings are beautiful preserved and a lovely reminder of a by-gone time. One day Mac and I were sitting together on the Old Town Square. As I looked at the sights a thought struck me, “All these building have been here for hundreds of years before me and will still be here long after I’m gone.” “You’re being a little egocentric, don’t you think?” Mac said puffing on one of his blasted cigarillos.

But I wasn’t. I was feeling my smallness in the existential sense. I was just one person on a planet with, at the time, nearly 6 billion others, just one of the billions of people who have ever taken a spin on this big blue ball. Oddly, the observation made me feel very peaceful. For some reason it made me realize that I am only one person with a limited sphere of influence and that all I could do, that anyone can do, is their best. I didn’t have to change the world; I merely had to be kind, honest, decent, and loving. It was very liberating.

I just finished reading C.S. Lewis’ Miracles. In reading his work I realize that I could never have earned my Doctor of Philosophy in the actual field of philosophy. I had to read many paragraphs several times to finally understand Lewis’ logic, but I persevered. In it he tells the story of a friend who wrote a play in which the central idea was the protagonist’s pathological fear of trees. The play included other side stories as well and, when he finished it, sent it to someone for comment. The critic responded, “ … cut out those bits of padding about the trees.” Lewis’ point is that we are all part of a very long story, God’s story, one with a complicated plot.

I was thinking about all this last night while I was waiting for sleep. Thinking about Mac and our unlikely friendship, that moment on the Old Town Square in Prague, and God’s long story. I thought that perhaps to try and figure out our place in the world, in the history of the world is like looking at one Polaroid photo and trying to construct an entire life from that one picture. It’s just not possible. And I don’t think it is possible for us to know or even have an inkling of why we are here, individually or collectively. All we know is, we are here for now. And that just needs to be enough to inspire us to be the best that we can be for each other and ourselves.

Medical Update: The Good, the Bad, and the Ugly

2008-08-21T09:07:00.002-04:00

I confess that the Italy post were a distraction, a little smoke and mirrors on my part to avoid discussing more difficult realities. Today, for whatever reason, I feel like I can write a medical update.

The Good News

I've gained weight. My bras actually fit again and, for a few of them, my cup runneth over. The weight gain is most noticeable in my upper body, especially my arms so I no longer look like a walking stick figure. The TPN is definitely doing it's thing. I try not to get furious when I consider the fact that I wanted to go directly to TPN ("Go directly to TPN. Do not stop for a G/J tube, or a second G/J tube. Do not owe thousands of dollars"). When the anger wells in me I try to meditate instead. I haven't hit nirvana yet, but I'll keep you posted.

Yesterday we spent an hour on the phone with my darling rheumatologist, Rick, in Charleston. The call was in lieu of the visit I was supposed to have yesterday but felt too exhausted to make. Someday I'll write more about this wonderful man because he is one of the few physicians I have met along the way that I not only consider open minded and intelligent but also warm and caring, a real mensch.

We discussed my current physical status at length and the options before me. We developed a plan of attack, and Bill and Rick divvied up tasks to investigate some newer drugs that have antifibrotic qualities. But I had an ulterior motive for the call.

When I was a young girl and began reading novels, I would always read the ending part way into the book. If I did not like the ending, I would sometimes stop reading the book. Sometimes I would still read it but keep my emotional distance from characters that I knew would fare poorly. I haven't done that in a very long time. I happen to be reading a mediocre book by John Grisham right now. It's very light and easy and takes places in Italy so it suits me for now. I skipped ahead yesterday to uncover the denouement and sort of chuckled at the 10-year old me resurfacing again.

Once she was there, she was not going back. So, during the call with Rick, I finally asked how it ended for pulmonary fibrosis patients. I needed to skip ahead for a few minutes so I could brace myself for what's coming. Rick, to his credit, answered calmly and honestly. Eventualy my heart, which is already working so hard beating 100-120 a minute at rest, will start to give out. Pumping against the increasing pressure in my lungs will prove to be too much and I will, most likely, die from cardiac failure. Unless of course I get another air embolism or sepsis or something fun like that.

A little anatomy lesson: The blood without oxygen (deoxygenated) enters our right atrium through the superior and inferior vena cavas. The blood enters the right ventricle from there and then enters the lungs through the pulmonary artery. In the lungs in becomes oxygenated via the capillaries the cover the alveoli (air sacs). The blood then returns to the left side of the heart which pumps it out to the rest of the body.

The pulmonary fibrosis has left me with insufficient surface area to oxygenate my blood and I cannot take very big breaths either. So my lungs and hert work overtime just to keep all the cells in my body supplied witht he oxygen that they need. So far they are managing. I had an echocardiogram in July that showed a completely normal looking heart, normal size and normal pressures. My heart, physically, is holding up. The question is for how long. I suppose the good thing is that we will have advanced warning. I will develop signs of right side heart failure and the echocardiogram will show an enlarged heart. At that point we will know I am nearing the end.

I suppose I'm glad I peeked ahead. The problem is that I cannot put this book down. I can't walk away this time because I'm not the reader, I am the author and a powerless one at that.

The Bad

A week ago we decided to start a new drug tht is being used in Phase II trials in scleroderma. It is called Gleevec and is largely used for stomach cancer. There has been a case report of a patient with recalcitrant scleroderma improving on the drug. Bill really wanted me to give it a try so I agreed. Within three days I felt horrible. I developed edema (fluid) everywhere and horrible muscle pain. I even had edema in my gums that was making it impossible to sleep. So I am off that drug now. We will try it again in a few weeks at a lower dose and see if I can avoid the side effects this time.

The Ugly

When the interventional radiologist put in the first G/J tube, they had to move my stomach to tack it up against my abdominal wall. Something about that procedure seems to have irrevocably changed the amount of food that I can consume. The tube was removed three months ago and I can still only eat about 3/4 c worth of food at any one sitting. I don't think it's ever going to go back to normal, which means I will likely be TPN dependent for life. I cannot tell you how much this disappoints my inner glutton. It is good news for my dinner companions, however. We went out on a double date last night with our friends Courtney and George (yes, I left the house with make up on and everything!) at my favorite vegetarian restaurant. They have the most amazing gnocchi I have eaten in the United States. I managed to eat maybe 9 of them so everyone else devoured the remainder. At least it doesn't go to waste ;)

Lost In Translation

2008-08-20T09:14:00.002-04:00

I wrote this before I started TPN but I had to have one of my firends check my Spanish for accuracy before posting ;)

Gloria has been our housekeeper for over 4 years. A friend of a friend recommended her after we fired our first cleaning woman because we had a difference of opinion about whether or not taking out the trash was included in her job description. So Gloria entered our lives unassumingly and on a once a week basis.

At first Gloria and I kept a polite distance. I felt very awkward about having a housekeeper because I felt like I should be able to do things myself. But scleroderma causes severe wounds on my fingers so cleaning is difficult and painful. We are fortunate that we can afford this luxury. To assuage my guilt I tried to make Gloria’s job easier. I stripped the beds every Friday and I tried to remove clutter from the bathroom and kitchen counters so it was easier for her to clean. In doing these things, I made myself feel like Gloria and I were a team rather than part of some hierarchical relationship.

Over time, Gloria and I started to communicate more. I spoke to her using the Spanish that I remembered from high school. She spoke back to me slowly in her native tongue or in the English that she was learning in school. I learned more about her and her children: two boys and a girl. My Spanish and her English improved and, when nothing else worked, we used gestures.

It did not take long for our friendship to bloom despite all our differences. I have learned that between two open hearts race, ethnicity, educational status and all those other barriers matter very little. Gloria and I came to rely on each other. She took on increasing responsibilities in my home as I needed more help. She often asked us to help her when she need to perform tasks via the Internet and I learned how hard it must be to function in our technology driven world when you live on the other side of the digital divide. Her daughter, Ruth, spent a few weeks living with us when Gloria had to return home to be with her dying mother.

When Gloria had her fourth child, I visited her home for the first time. She proudly showed me her new daughter, Michelle. Michelle was only a few weeks old but she had the most enormous crop of hair I had ever seen. Gloria and I visited while Amelia and Ruth cooed over the baby. Gloria showed me pictures of her and her 11 siblings. In one photo they were all young children posed with her parents. The black and white photo reminded me of a photo from the 1920s, but Gloria and I are almost the same age. In another photo, they were all gathered together at her parents’ 50th anniversary celebration, all beaming with their great grins. I learned more about her childhood & her life. She grew up in a rural area and her parents had a small dairy farm. The made cheese and sold it in the local market. She spoke lovingly of her mother who had died just a few weeks after Michelle was born and showed me the altar she made in her mother’s honor. Her small home was filled with love: photos of her children and her family, frijoles simmering on the stove, and four beautiful, respectful children treating each other and their mother with great kindness.

As my illness worsened, I tried to explain it to Gloria. She understands that I am very sick and she knows that my lungs are badly damaged. One day, after the feeding tube was placed, I was lying on my bed crying in pain. She lay down next to me, “Gloria, I don’t want to die.” I told her in Spanish. “No te preocupes [Don’t worry],” she consoled me with a loving embrace, “¿Quieres que te de un pneum? [Do you want me to give you a lung?].” This tells you everything you need to know about Gloria, she would give until it hurts.

Last week, when it became clear that I needed to go on TPN, I told Gloria that I needed to speak to her. I tried, in my best Spanish, to explain the situation and what was about to take place. I told her that if the TPN did not work, that I would likely die in a few months. She cried, “No! No! No!” We held each other and I tried to calm myself. I explained that I was too weak to continue to cook every night and I wondered if she could come one more day a week to help me cook. Gloria wiped her tears and grew very serene. She spoke to me slowly so that I could understand her. She would do whatever I needed her to do. All I had to do was ask her. Her boys would care for Michelle, and she would be with me as much as I needed.

We continued to speak and it was as if I was channeling Sister Angela, my high school Spanish teacher. Sr. Angela, who we affectionately called Hermana Rana [Sister Frog], was a rarity in so many ways. First of all, she was African-American. How she ever ended up in an order of Polish nuns is beyond me. When she wore her white habit, she joked that she was a reverse Oreo cookie. She had an amazing sense of humor, was relatively young, and had actually dated before entering the convent. She even had a prom picture to prove that she knew all about dating boys. Her candor made for very interesting advice and conversations. “Now girls,” she would embark on one of her funny speeches, “when you go down to Senior Week and you have your bosoms hanging out all over the place, don’t be surprised when the boys are bothering you.” I’m not sure what the point of the speech was, I was too overcome with the exaggerated way she said “bosom,” to keep listening. So I never got if we were
supposed to cover our bosoms or just be prepared to deal with the consequences of partial nudity.

Suddenly I could understand Gloria far better than I usually can and I was finding Spanish words that I hadn’t spoken in years. I poured my heart out to Gloria. My fears and worries about myself, Bill and the kids tumbled out of my mouth. She looked at me with her deep brown eyes and calmly told me, “Tranquila [Be calm], Tú estarás bien. Los niños estarán bien, Todo estará bien. Dios es grande.” She shared her hopes that the TPN would make me well and she told me that I must be hopeful so that my body could accept the treatment. Then she braved darker waters. She spoke about her mother, a good person who loved her children and worked hard her whole life, but who has passed away. Meanwhile her father – a drunk and lazy man – is still alive. “It makes no sense,” she continued in Spanish, “We ask God, why?” And then she told me the answer, “Because God needs angels, too. And if he takes you it is because he needs you.”

When I was in my early twenties, academic pedigrees impressed me. But my years in the Ivory Tower and my experiences out in the broader world have taught me that educational attainment and wisdom are completely unrelated. My mother always makes self-deprecating remarks because she did not go to college but she is an incredibly bright and resourceful woman. She writes and speaks beautifully and has a knack for rigging unique solutions to life’s problems. Because my father attended college and was a successful engineer, my mother assumes that her five children got their smarts from him. Over the years I have tried to tell her that not being educated does not mean that one is not intelligent. I have tried to explain that my own love of writing comes from her. But my efforts have fallen on deaf ears.

As I sat with Gloria I thought about how she teaches me often and poetically. One day I felt badly because I was not able to speak with her because my cough was too severe. “Lo siento que no puedo hablar contigo. Quiero hablar pero es muy difícil para mi. [I’m sorry I cannot speak with you. I want to but it is difficult].” “No te preocupes [Don’t worry],” she responded, “Escucho a tu corazon [I listen to your heart].” Felled by her eloquence, my eyes welled with tears.

Gloria and I finished our heart-to-heart and she resumed cleaning the house. When Bill arrived home from work, I told him about the conversation. I told him all the loving words Gloria had spoken and how amazed I was that I was able to understand her. Bill, always practical, then asked, “So what days is she going to come to help with cooking?” “I dunno,” I answered, “I missed that part.” He looked at me with his face schrunched up, “You understood everything else but you didn’t understand what day she is coming.” I shrugged my shoulders, “I understood the important part. The day she comes is just a technicality.”

Sunday in the Park with James

2008-08-19T12:44:00.003-04:00

Growing up in a large middle class family in Philadelphia was a serious impediment to obtaining my “own wheels.” My parents not only could not afford a second car for their aging brood, they could not afford the insurance premium increase associated with having an adolescent on the policy. So, I never learned to drive until I was 21. Fortunately, most of my peers shared my predicament, which left us with two options: sponge off the few kids whose parents could afford the luxury or submit to being chauffeured around our parents. I chose to do both.

My friend Kelly had a car and often provided transportation for 10 of us at one time. No one talked about seat belts and car safety in those days. State legislators had just finished raising the drinking age all over the US and were busy resting on their laurels. I am sure it was illegal for that many of us to squeeze into a car but we never once got stopped while the car was in motion. No one ever pulled us over when we did Chinese fire drills or had so many people in the car that arms and legs were poking out of the windows. Then again, with Philly’s violent crime rate I suppose the cops had better things to do. One hot sumer night, we did get stopped when a gang of us was hanging out at a park close to curfew. You should have seen the looks on the cops’ faces when they discovered that a dozen teenagers were sitting on the hoods of two cars literally drinking milk and eating cookies.

The alternative means of transportation available were our fathers. My dad, James, came ready made with a perfect chauffeur name. Sue’s dad’s birth name, Hugh, simply would not do so we dubbed him Edward. Marie’s dad was the most unreliable person on the planet so he never took us anywhere (except once to Great Adventure and he was a hour late to pick me up). Whenever we needed a ride home, Sue or I would call our dads, “James (Edward), please do bring the car around.” I hear that most teenagers find it embarrassing to be driven around by their parents, but it never bothered me in the least.

My Dad came to visit this past weekend to keep my younger brother Keith company on the drive from Philly. My Dad, Keith and Bill spent Friday and Saturday cleaning out the storage room and attending to various other unfinished projects around the house. On Sunday, Bill and Keith took the kids to a water park in nearby Greensboro, leaving my father and I alone. “You and Pop-pop can argue about Obama,” Amelia suggested. It hasn’t taken long for Amelia to figure out how my dad and I like to spend our time together: debating. Well, at least, when I could debate …

Over the last week I have realized that there are two keys to maintaining my sanity. The first is to allow myself to curl into a ball and cry whenever the need strikes, more on that some other time. The second is to get out of the house on a daily basis. The latter presents a real challenge however.

I took Amelia to the orthodontist last week. I made it there but bgean coughing violently upon arrival and puking in the car. She had to check herself in and go through the first part of her appointment without me while I pulled myself together. This is always the risk of leaving the house. Because I never know when and where a bad fit is going to occur, I take the chance of landing on my hands and needs in an aisle somewhere puking and gasping for air. The odds of it happening are greater when I am walking than when I am in my wheelchair; I guess the increased demand on my lungs instigates the fits at times. Unfortunately, I cannot get the wheelchair out of my car alone nor do I have the strength to roll myself for very long. Consequently, I am not a big on making solo trips requiring more than 10 minutes of walking.

There my Dad and I sat Sunday morning, needing something to do. “Can you take my out in the wheelchair,” I asked. He readily agreed and lassoed up Zara, our younger dog. “There’s a nice park over in Chapel Hill with a paved path, we can go there,” I suggested.

Despite having had open heart surgery last year, my father is in excellent health and looks far younger than his nearly 76 years. He is a handsome man, even more handsome than he was in younger days. Like George Clooney or Gary Grant he just grows more and more attractive with time. Despite his petite figure he seems to have escaped a Napoleonic complex. I chuckle at his tiny hands that look like little paws. Closer examination of them reveals that his calm demeanor is a façade; his fingernails are bitten down to nearly the cuticle. He is not ashamed to admit that he sometimes buys sneakers in the women’s department because they fit him better and the selection is wider. But my favorite of his physical features is his hair, which is as pure white as cotton. He went grey very young and was completely white in his 50s. He just wouldn’t seem like my dad without that beautiful hair.

I drove us to the park, which my Dad recognized immediately from the children’s playground days. We used to take them there with their strollers and tricycles. We started down the path, winding first through the playground and rose garden and then through a small neighborhood of cinderblock and shotgun houses. “That’s the one I lived in that burnt down,” I said, pointing at a yellow house a block away. We chatted about the house, the fire, and the sad fact that the roommate that I shared the house with died two years ago in a car accident along with his two-year-old daughter.

The trail first opened in 1995 and linked the eastern side of Chapel Hill to its major north-south artery, then known as Airport Road. Other than the initial part of the trail, where one can here traffic and the barking dogs boarding at a nearby kennel, the trail is peaceful and quiet, containing only the sounds of nature and other trail-lovers. It is truly an oasis with a large variety of trees, vines with leaves as big as my torso, and lots of critters and birds.

On this Sunday morning, my father and I were alone most of the time and chatted comfortably. The debates that long characterized our relationship are now long gone. He knows I no longer have the voice for that and that our words are better spent truly enjoying each other’s company. We talked about the house he and my mother just purchased, how it seemed odd to do so at his age but that he was happy with the decision. He filled me in on all the family news: my Aunt Mary moving back to the city, the plans for my Aunt Dolores’ 80th birthday party, and my niece’s college plans.

At times we talked about my situation. My father is not one for platitudes, “No one can tell you that they know how you feel. They don’t.” He acknowledging my suffering without taking the next step that so many people feel compelled to take. He didn’t tell me, “Don’t give up,” though I know he wants to say it. He holds back his tears, he keeps his voice calm, but I can hear his heart screaming, “Please don’t go.” I don’t think he can bear the idea of losing me.

I have always thought that my dad and I were “two peas in a pod.” We share a profound adoration for the written word. And I inherited my wanderlust from him. When I was young and he realized that I was bright, he constantly engaged me in debates, always taking the opposing point of view. Being a stubborn child I took every challenge and went head to head at every opportunity. He made me a thinker (and a stubborn pain-in-the-ass as well). But the most important thing my father taught me was that displaying one’s emotions is a strength not a weakness, regardless of gender.

At one point in the walk I remarked to him on the irony that he, my 76 year old father, was pushing me, his 39 year old daughter. “I get angry at God sometimes" he confessed, " But mostly I think he just puts us here and then he can’t really fix much of anything.” We continued with our journey. He pointed out a sweetgum tree. “They really should put signs on the trees so people can learn what they are,” he suggested and I agreed. He loves the trees and will spend hours wandering through Pennypack Park, books in hand, trying to identify the different varieties. He asked me about one strange-looking tree along the way. “That’s not the tree you see,” I explained, “It’s the vine covering it. Vines like to live on the trees here.” I thought about the Spanish moss and the wisteria, two of my favorite tree-clinging vines. “It seems like that would be bad for the tree,” my dad observed. “Sometimes I think it’s symbiotic,” they both get something from each other. This concept – that of mutual benefit through shared resources -- seems to happen so easily in the natural environment yet is somehow lost on us humans at times, like we are all still 2 and playing in the sandbox.

We were silent for a little while. “I love you Dad,” I said, voice cracking. He ruffled my hair, expressing everything without saying a word. It’s hard to admit how much you need someone, how much you love them, how much it hurts. There we were, my elderly heartbroken Dad keeping me moving, literally and figuratively, while I feed the hope in his heart that, with help, I can keep embracing the joy that remains available to me and fighting one day at a time to accept this new life that I have for as long as I have it. Symbiosis, indeed.

The Last of the Italy Logs

2008-08-18T12:34:00.002-04:00

Well, this is the last of last year's travel logs. Starting tomorrow I will get you up to speed on the last couple of weeks activities. I hope you enjoyed the break from the whole living/dying schtick I've got going.

The Kindness of Strangers

I have coughing fits nearly every day. I know when they are about to happen and, if I act quickly, I can usually keep them from getting too severe. I was at the pool with the kids last week and I could tell that one was about to occur. Not wanting to leave them unattended, I delayed and missed the opportunity to avert a crisis. By the time I got to the locker room to get money for a cold water, it was too late. I was coughing too hard to even get the key in the lock. Soon three young Italian women came over to help me, but I was completely unable to speak. Then I heard someone speaking English. An Irish women asked me what I needed and took my key. While she rifled through my bag, one of the Italian women ran and got help. I managed to get myself to a bench and tried to breathe. Before I knew it I was flanked on either side by two of the lifeguards. Next thing I knew one had my shoulders and the other had my legs. Mind you I was wearing the teeny bikini. “Oh god, where are they taking me,” I thought. They placed me on the ground, which made it impossible for me to get in any air. I scrambled back onto the bench and continued to struggle. Finally I got out the words, “No medicine. Water, cold water.” While we waited for water, one of the lifeguards kept repeating, “Calma, Calma.” I realize now how bad these fits must looking because I had amassed a pretty huge audience. When the water arrived, one of them proceed to pour it all over my head and back. When I had fantasies about a gorgeous, bare-chested Italian man taking my breath away this was NOT what I had in mind. I finally was able to convey the idea that I needed to DRINK the water. About this time Loredana, who runs the snack bar, arrived with ice water. She had seen me have a much less severe attack they first day at the pool and had remembered the ice. Then an American women I had been chatting with earlier in the day arrived on the scene and asked if I needed her to translate. By this time the water was working it’s magic and I could speak. The lifeguards asked if I need an ambulance and I explained that the coughing fits occured frequently and that it was now over. I explained the situation to the American who translated and, I thought, made it clear that I was now fine. Loredana took Aidan and another parent watched Amelia so that I could pull myself together.

When I went out to the snack bar to get Aidan, he was happily sucking on a lollipop. Loredana told me that the ambulance had arrived and asked if I wanted to see the medic. I felt so badly about all the fuss that I agreed. The medic took my vital signs and there was much ado about my blood pressure, which was 80/60 but not unusual for me. I could catch a word here and there and it was clear that everyone thought I should eat and lie down. The medic asked if I wanted to go to the hospital and I refused. Loredana handed me some crackers and Alessandro, my new best friend, made me lie down in the infirmary. Once I felt like I had rested enough to make everyone happy I sat up. Alessandro asked me to call my husband to come get me so that I wouldn’t have to take the bus home. Once I explained that we did not have a car, he arranged to borrow one and took me and the kids home. I wanted to kiss him for sparing me the 1/8 mile walk up a 30% grade to the bus stop. I cannot express how much I hate that walk.

Throughout the entire ordeal I was struck by the reality that here in a country where I know virtually no one, all of my needs were met in an instant by strangers. It makes you feel good about the world when somehow, someway you have everything you need even when you are incapable of getting it on your own accord.

Mangia Bene!

It will come as no surprise that eating has been one of our greatest pleasures here. I like the food so much here that I lay awake at night thinking about what I’m going to eat the next day. Granted, I am awake because it is hotter than hell, there is too much light in the room, and our fellow dorm residents stay up talking until 2 am. I have a very narrow range of acceptable sleeping conditions and I find myself wishing I was a sleep slut like Bill who can fall asleep under any circumstances. So I alternate between thinking about food and singing Schoolhouse Rock songs to myself. The kids have really enjoyed that DVD, but I can’t get “Lolly, Lolly, Lolly” out of my head.

I’ve never been a big meat-eater but 6 weeks in Italy has turned me into a carnivore. The meat here tastes so much better than in the US. Even turkey, which is hardly a popular Italian meat, is infinitely better than ours. Amelia eats it plain with her breakfast and I find myself eating two sandwiches everyday for lunch. Similarly, the eggs are absolutely delicious. In the US I tolerate the yolks of a hard boiled eggs while I relish them here. I now have some serious concerns about US poultry production. The salami and proscuitto are incredible, especially when paired with melon or piadina (the delicious Italian variant of a tortilla). We’ve also eaten an awful lot of olives, an addiction that might prove to be expensive to keep up on the other side of the pond. And Amelia and I have also developed a real affection for tuna packed in olive oil; I will never go back to the spring water variety if I can help it.

The Lonely Planet guide has a sidebar detailing the 5 Italian restaurants to visit if you had one night left in Italy. To our delight one of them, Osteria del Ghiotonne, is in Perugia. We went there with my best friend Marie and her husband Jan and made complete pigs of ourselves. I was on about day 5 of steroids and really enjoying my new ability to chow down. We ate a platter of mixed antipasti and another of mixed salumi and melon. Then everyone else devoured their pasta dishes while I enjoyed a very hearty, peasant-style vegetable soup thicken with toasted bread. After that Bill, Marie and Jan moved onto their meat dishes while I enjoyed the lightest, most delicious gnocchi I have ever had. Gnocchi, for the unindoctrinated, are made from potatoes and flour. Made poorly they lie like bullets in your stomach. But these gnocchi were the lightest that I have ever eaten, perhaps because they were not made with cheese as the usually are. I’m still thinking about them. We finished our meal 100 euros lighter, a pounder or two heavier, and incredibly satisfied.

So between turkey sandwiches, peasant soups, Roman pizza, and Perugian gnocchi, I have plenty of fodder for my sleepless nights. I may be exhausted beyond description but at least my stomach is happy.

The Tipping Point

Here in Italy I could no longer ignore the reality that my lungs are failing. I have known for several months that I was not feeling as well but I kept hoping it was just temporary. On this trip, however, my disease final brought me to my knees. I keep thinking back the the Scala Sancta in Rome. The stairs were brought to Rome by Constantine at the request of his mother, St. Monica. Pilgrims ascend the stairs on their knees only. I didn’t join them but I felt as if I were among them if only in a proverbial way.

During my time here, the metaphor of emotional baggage seemed suddenly apropos. As I watched the children in Santa Marie Novella station that first day, I had to choke back tears. Each had a smaller bag drapped around their neck. Aidan was dragging two roller bags and Amelia was dragging a bag half her size. All I could carry was a bottle of water and they were forced to compensate, dragging bags half their size but more importantly bearing an emotional burden that seems terribly unfair and premature. I watched them and wondered how their little hearts don’t break. Was I wrong to drag them into this? Not the trip, this life, this drama? Now I realize what they will have to endure when I succumb to this disease and I feel a horrific sense of guilt. And I watched Bill carrying three large and heavy suitcases, the stress unspoken but mounting. Suddenly the size of the emotional burden seemed to have a dimension and I could visualize the burden of parenting the kids alone. What had I done?

For so long I have “done it all” in defiance of my illness. I guess I thought if everything seemed normal then indeed it was. Here, in Italy, I finally came to my senses but not in the way I expected. I expected to be overwhelmed by the beauty of the landscape, the food, the sites but instead I was overwhelmed with the reality of my own life. Here I finally realized that by burning the candle at both ends I was using it up at double the rate. I often think the Rolling Stones could not have been more correct in observing that we don’t always get what we want but rather what we need. Had this been an easy trip I would have returned to life in the US and continued as normal. But being brought to my knees forced me to make a very difficult decision to stop working. While I had been contemplating it for a long time, I needed something to force my hand. And now that the decision is made and all the appropriate people have been told, I feel tremendous relief and, admittedly, a little trepidation because I can no longer define myself by my career. But the decision feels very right. I hope that when I finish up at the university (I vest in December) I will be able to focus my energy on my health and my family. I hope this will maximize the quality and length of my life.

Today we missed our last of three trains on our way back from Rimini. Bill ran up to the station while the kids and I waited in the sottopassaggio (underpass between platforms). Bill was taking forever and I really had to use the bathroom. I had been feeling a little better and earlier in the day had even pulled luggage on my own. I told the kids we had to get the bags up the stairs. “Mommy, you can’t carry that bag,” Amelia insisted pointing to the enormous bag that comes up to my navel. “I’m going to have to. I really gotta pee,” I told her. I sent her up the stairs with the smaller bag. I grabbed the top of the big bag and told Aidan to get the bottom. “I can’t,” he said. “Yes, you can,” I assured him, “Just help a little.” Aidan and I got it half way up the stairs and then Amelia came and grabbed the side handle. And the three of us got that bag up the stairs. When we reached the top I was still breathing easily. And I looked down at those two little kids and I thought, “Wow, we’re a team.” Six weeks ago I wasn’t sure we’d be able to stay, but the four of us managed to pull together and make it work despite the challenges. We may never win any competitions but we may just pull each other though the only race that really matters.
When we found Bill, he looked at us oddly, “How’d you get the bag up the stairs?” He asked. “We did it together,” I replied with the kids beaming proudly. If nothing else, this trip has shown them how incredibly capable and self-reliant they can be. “Are you ok?” he asked, looking worried. “Yeah, I’m ok.” As we exited the station in search of someplace to spend the two hours until the next train I felt a glimmer of hope. Maybe things are bad, but not so bad. “I can pull that,” I said to Amelia grabbing the suitcase from her. I walked on, finally able to pull my weight, and I felt incredibly at peace.

More Italian travels ...

2008-08-17T09:08:00.002-04:00

A whirlwind weekend in Venice

We decided to take an impromptu trip to Venice last weekend. We’ve learned that breaking up long train rides makes the trip more bearable for the kids so we spent the first night in Bologna and then went on to Venice. Our first afternoon we headed to Piazza San Marco where the kids had heard there were a lot of pigeons. I’m not sure why but the kids are incredibly fond of pigeons, they were similarly intrigued by them in Paris. We purchased some pigeon feed for the kids and they happily began feeding the pigeons. In moments they were literally covered in pigeons; pigeons on their heads, their arms, and swarming about their feet. Before long they had mastered catching them. This entertained them for at least 90 minutes.

Bill and I noticed that they were setting up for a Peter Gabriel concert that was to take place that evening. We debated whether to come back for the concert but decided it would be too late for the kids. While the kids played with the pigeons, I heard a familar haunting voice. Sure enough, they were doing a sound check for the evening’s concert. I watched through my telephoto lens and could see Peter Gabriel singing on stage. He ended up singing 5 songs so we got experience the concert after all.

Venice was, of course, swarming with tourists, but once we walked two streets beyond the major tourist attractions we seemed to be in the company of locals. We spent the weekend wandering through the streets of Dorsoduro and Cannareggio, eating makeshift picnics from grocery store items, and riding vaparettos (the water buses). We also went to Murano, the island famous for its glassmaking factories. We saw few of the sights, choosing to let the kids dictate our activities. But we had a great weekend just being together. Venice is so unique not only because of the canals but also because it is so colorful. The buildings on the back streets are lovely shades of coral, yellow, orange, and red and the shops are filled with the most beautiful glassworks. Two days was not nearly enough; we all hope to return someday. And the food was just fabulous! It was such a treat to enjoy seafood after 4 weeks in landlocked Umbria.

Diplomatic Immunity

A friend of mine is married to a Marine and, consequently, has moved her children all over the US. For the first several months after every move she has noticed that her children are sick more than normal as if they are encountering a whole new set of microbes. That must be what we are experiencing here because we’ve had a lot of illnesses in only 4 weeks.

About 10 days after arriving, Aidan feel asleep on me while we were traveling via bus to Florence. [Aside: When I was standing in line at the bus station the day before we were to leave for Florence, I overheard that there would be a train strike the next day. The strike was to last for 12 hours from 7:30 am to 7:30 pm. Then, everything would go back to normal. Apparently this happens about once a month. I have no idea if the strikes are effective but, if not, perhaps they should look into extending the 12 hour limit. It was lucky that I overheard it because otherwise we would have arrived at the train station to following day to discover we had no way to get to Florence. But I digress...] I glanced down at Aidan and noticed he had red blotches all over his neck, face and ears. I pointed them out to Bill and he dismissed me, “It‘s probably just a heat rash.”
Bill and I have a long history of disagreeing about the kids’ ailments. Since he is primarily a basic scientist, he seems to have forgotten the cardinal rule of pediatrics: Always trust a mother’s instincts no matter how kooky she might seem. The first time Bill dismissed me Amelia was just shy of her first birthday. My normally happy little girl was a pill for the first time. I told Bill that I thought she might be getting her first tooth, and that perhaps we should give her some Motrin. He reached in her mouth, felt around and told me I was mistaken. The next morning Amelia greeted me with a big smile when I got her out of her crib. There on her bottom jaw was her first tooth. I glared at Bill triumphantly, “Told you so.” Similar showdowns have occured on many occasions. Most recently, I correctly diagnosed Aidan with scarlet fever before Bill did. One the bus to Florence, however, it didn’t matter if it was a heat rash or something else. There wasn’t anything that we could do about it.

We arrived in Florence and proceeded to drag the kids all over the city for hours. When we returned to the hostel, I noticed the rash was now everywhere and Amelia had also developed it. But neither child seemed sick so we didn’t worry about it. The next morning Aidan developed GI symptoms and Amelia looked like she was the victim of a new strain of small pox. Her face looked absolutely horrible and remained that way for over a week. She dealt with the many stares from strangers really well and had no other symptoms so, all in all, it was a pretty easy illness.

About three weeks later, Aidan developed his second GI ailment. Ten days later it is still going strong. Then I started thinking about all that bottled water, “Maybe these Italians know something I don’t.” Then I remembered my grandpa, Carmen. Carmen was born and raised in Foggia in the region of Puglia. He emigrated to the United States in his late teens, spending some time in Pittsburgh and then moving onto Chicago. I never knew why my grandparents left Chicago but my understanding is that it was in Carmen’s “best interests.” That’s when they ended up in Philadelphia’s less famous Little Italy, Tacony. By the time I came along, Carmen had settled into the typical existence of an elderly Italian-American immigrant. He spent his days in the park with his goombas and still appreciated life’s simple pleasures. I can remember sitting on his porch and hearing him say, “How nice!” when a pretty girl would walk by. He was a character. He still made his own wine, which would have substituted nicely for anesthesia, well into his eighties and when he saw anyone drink water he would warn them, “That stuff will kill you.” I laughed at the memory, wondering if there is some deeply rooted Italian taboo against drinking tap water.

When I mentioned to my mother that Aidan was sick, she immediately asked “You aren’t drinking the tap water, are you?” “Mom,” I reponded, “This is Italy not the third world.” Debate ensued and she, being the Italian-American mom that she is, told me that we should not be drinking the water. I have to admit that I did take Aidan off tap water on about day 6 of GI bought number 2. I guess I am now the next generation to doubt the safety of Italian tap water. It has not produced a miracle cure for poor Aidan, unfortunately.

I’ve avoided infectious illnesses thus far and only need to battled the nasty Italian mosquitos. They are vicious and have a particular prediliction for biting faces so I’m not looking too pretty either. Bill, as always, has experienced no maladies of any kind. Even the mosquitos feast on me at night while he sleeps unperturbed. I swear his body functions with the precision of a Swiss time piece. Meanwhile, I seem to have a body more akin to the cheap knock off you get from a NYC street vendor. At least one of us is going to live to a ripe old age.

Hot, Hot, Hot

In mid July, we started breaking heat records here in Perugia. We were creeping into the mid 30s (mid to high 90s) daily with very little relief at night. To take advantage of the cooling benefits of evaporation, I started taking my daily shower at night before bed. Ever since I developed Raynaud’s phenomenon 11 years ago, I have not voluntarily taken so much as a lukewarm shower. Here I found myself flirtering with the cold spigot. After the shower, I would lay on top of the sheets and try not to move a single muscle lest I generate heat of any kind. Not a whole lot of sleep was happening and things were getting desperate. So we opted for a change of venue: an air conditioned hotel by the Adriatic Sea.

Three short train rides later we were in Rimini. You can learn alot about a culture’s priorities by watching where they focus their organizational energies. I didn’t find the French particularly organized. For example, they cannot form a line. But French gardens demonstrate a real tendency towards anal retentiveness. The Italians also aren’t going to win any awards for organizational prowess but they apparently take vacation very, very seriously. We arrived in Rimini and purchased our bus tickets. We were delighted to discover the bus stops are numbered. What an inspired idea! No guessing about where to get off (scendere, as they say here). Before long we were checked in, changed, and headed to the spiaggia. We were to go, specifically, to beach club number 81 otherwise known as “No problem.” Why it was called “no problem” rather than the Italian “No importa” is beyond me. They seem to have an affection for randomly using English and Americana. In another humours example, the restaurant next to our hotel was called the “James Brown Trattoria” and featured pictures of the King of Soul. It seemed so incredibly random and weird. As we approached the sand, we glanced right then left. Beach clubs lined the entire strand and all one could see was literally tens of thousands of beach chairs and umbrellas. You may not bring your own umbrella and you may not bring a towel. A sign on the beach said, “No towels. Pericolo morte.” [Danger of death] You will pay for sunshade, as they say. So we reported to the “bath master” as the sign instructed, paid for our sunshade, and joined the throngs of people frolicking in the sea.

I have to say, the beach clubs are impressive operations. They were reasonably priced: for 10 euros a day we had the use of an umbrella and two beach chairs. The umbrella was an absolute necessity as the heat can only be described as oppressive. It felt like North Carolina in August. We also had free access to a large children’s playground, babysitting, a bocci ball court, ping pong tables, and vollyball courts. Mind you it was too hot to move so we didn’t actually use any of these facilities but they were nice ideas in theory. There were also changing rooms, showers, and bathrooms. We had virtually everything we needed. In addition to all this formal infrastructure, people from various ethnic groups wandered the sand selling goods and services. Each ethnic groups seemed to have cornered a particular market. They were organized as follows:
• Massage services: Asian women
• Knock-off designer sunglasses, watches and bags and sometimes books: African men
• Cheap clothing, odd toys, and cold drinks: Indians
• Il Cocco (Coconut): exclusively Italians who wander the beach yelling “Il Cocco, Cocco Loco, Cocco Bello” raising their voices and drawing out the final “Oh” sound.
In addition to this odd assortment, I also saw some poor soul in a Barney-like costume walking with a fellow with a camera. Apparently they hoped to make their fortune snapping photos on the beach with the many kids. I thought the guy would die from heat stroke before the afternoon was through. The informal sector spilled out into the streets at night and, though somewhat curious and humorous, the air of desperation in all these people was a little hard to overlook. What a hard way to make a living.

We enjoyed our long weekend at the beach. The kids loved playing in the sand, which oddly few Italian children seem to do, riding paddle boats (with slides) in the sea, and swimming in the warm water. I also enjoyed a rare opportunity to be not only Raynaud’s free but so hot that I could only bear to wear a tank top. I hadn’t been that hot since, well, the last time I was in Italy .... Every night on the news they reported on the weather around the country. Florence was topping out at 44! They started showing people cooking pasta in the ocean, apparently the Italian equivilant of frying an egg on the sidewalk. Going to the beach had clearly been a good call.

The other unanticipated benefit of the trip was the food. We paid for a half board and took our breakfast and dinner at the hotel every evening. Each night there was an extensive buffet of antipasti. This coincided nicely with my being on steroids and gave me ample opportunity to satisfy my new and improved appetite. I ate so much that I looked three months pregnant at the end of every meal. In addition to the buffet, we had a choice of four “primi piatti” and “secondi piatti” each night. And pizza was not on the menu. This forced Amelia to eat something other than pizza at a restaurant. She rose to the occasion and discovered that she really loves turkey, chicken, mussles, and clams. Aidan, as always, ate only pasta every night.

More Italy ...

2008-08-16T15:02:00.004-04:00

Did anyone try the link to the photos? If so, did it work?

High Maintenance

I readily admit that I can be fairly high maintenance when it comes to food. I will complain ad naseum about the bagels in North Carolina, fast food, or other things that offend my culinary senses. It’s not that I need to have the finest – after all, I like jelly beans – I’m just particular. Here I am completely befuddled by the ubiquitous self-service restaurants. These are restaurants that have food at the ready and you just take what you want. Sort of like a cafeteria but a lot more common. I’m not really bothered by the salads and such, but I’m completely grossed out by ready made sandwiches. “Oh, yes, please give me a soggy tuna sandwich that has been sitting out since 9 this morning. A good case of food poisoning is just what this trip needs to spice it up.” I don’t think so. Bill was ready to kill me in Florence because I kept refusing to get food at one of these places and everyone was starving. Finally, I caved in. It wasn’t as awful as I imagined but it wasn’t good either.

The next day I noticed that the Lonely Planet guide had highlighted a place that made sandwiches to order. I dragged us through Florence in search of said establishment. When we turned the corner of the street there were about 30 people either in line or crouched on the sidewalk eating sandwiches. I got in the queue while Bill took the kids to the bathroom (this was the day Aidan was sick with a GI bug and, let me tell you, that is not a good thing on a European vacation). The place was literally a 7 feet high, 4 feet wide, 2.5 feet deep hole in the wall. The back wall was lined with wine bottles, a small cash register was in the left hand corner, and the right hand corner was filled with all the necessities for making 23 different kinds of sandwiches. Soon it was my turn and I have never been so happy to order a sandwich in my entire life. For 10 euros I got four sandwiches made in less than 2 minutes. It was impressive. I found a spot on the sidewalk and waited for Bill to return with the kids. They returned, cleaned their hands with hand sanitizer ( a must-have on these trips), and we gorged ourselves. The experience made this food snob’s day. Even if I had to eat on a dirty sidewalk filled with pigeons.

Which brings me to my next observation. What do people have against sitting down and eating? Many of the bars and self-service places charge you a different price if you sit down to eat. Few people seem to be willing to pay for this so everyone just stands around crowding the place and leaving the tables empty. The ice cream place we go to has about 20 tables. I have never seen more than four of them filled but everyone stands around eating next to the tables. I don’t understand why this is a preferred outcome.

And my last burning question is what is the deal with tap water? The only restaurant we have been to that served tap water was in Lucca, where they actually have fountains all over the city where the locals fill up their water bottles. Elsewhere we have had to pay for bottled water. Is the tap water not potable? Is this just a money making scam? No one has water from a soda fountain and I have yet to see a water fountain (bubbler for you Wisconsinites). And ice is virtually non-existent. I asked for ice at one restaurant and the waitress brought me a bowl with 5 cubes in it and a spoon. I guess we were supposed to share the cubes among us.

Itsy Bitsy Teeny Weenie

The first few trips to the pool I was too cold to get in the water with the kids so one day I left my suit at home. When we arrived, I discovered that the retractable roof was open, leaving the pool area gloriously warm. “Damn,” I thought, “I wish I had brought my suit.” After 40 minutes of watching the kids I decided to see how much the suits cost at the front desk. Much to my surprise the price was reasonable. I asked for a size 36, erroneously assuming the Italians used the same sizing system as the French, and was told the smallest size was a 40. The staff person took the suit out of its Ziploc sized bag and showed it to me. It was slightly bigger than Amelia’s current suit. I had already noticed that Italian women have a different standard for backside bikini coverage then we do in the US so I wasn’t really surprised. Not only do they wear these suits, they actually swim laps and do water aerobics in them and I have yet to see a boob fall out of the tiny tops. “What the hell,” I figured, “I might as well blend in.” So I took my bikini in its little sandwich-sized bag to the locker room and changed. Fortunately, my daily energy expenditures here have resulted in considerable weight loss so I could squeeze my butt into the bottoms. I could just imagine the stares this little number was going to generate at Duke’s Faculty club come August. When I came out to the pool deck Amelia cooed, “Mommy I like that suit.” “Good thing,” I thought, “because you’ll be wearing it next year.”

Yesterday I was at the pool and I noticed two women wearing really modest bathing suits. You do see women wearing them here but they are generally the T-back racing variety. But these suits screamed “American woman” as loud as The Guess Who. Sure enough as they got within earshot I heard the familiar sounds of American English. We stand out in so many ways.

It’s not just the women who like their tiny little suits. The men are also like to show it all off. God those Speedo’s leave nothing to the imagination. And every once in a while a man will stick his hand in his suit and rearrange himself right there on the pool deck. I’m getting used to them though and I have to admit that there are some fine looking men at the pool so I’m not really going to complain too much. I’ve even learned to overlook the dorky swimcaps that we are all required to wear.

Try it, you’ll like it

Anyone who has ever experienced a meal with Aidan knows that he is the ulitmate picky eater. Minus a few green vegetables and fruit, everything Aidan eats is beige. He has yet to meet a complex carbohydrate that he doesn’t like but he shuns meat in all its forms with the exception of bacon and chicken nuggets (and who knows if chicken nuggets are actually meat). Not only does he have a narrow range, he absolutely refuses to try anything new. All this, combined with he fact that the child is perpetually in motion, has made it impossible for him to gain any weight. He is the only 6 year old I know who has not graduated to a booster seat because he has yet to reach 40 pounds.

On this trip he has tried two new things: prosciutto sandwiches and meatballs. I think the prosciutto sandwich sampling occurred out of extreme hunger and he will only eat them if there is one thin slice of meat (my mother is going to love this because that was the only way that I would eat sandwiches as a child). But the meatball attempt is a slightly more involved story ...

On our first night in Venice we went to a restaurant recommended in the Lonely Planet book. I noticed that meatballs were listed in the appetizer section and asked Aidan if he wanted to try one. To my surprise he agreed. When the waiter brought the meatballs I noticed that they had been coated in breadcrumbs and deep-fried. This was as close as we were going to get to a chicken nugget in Italy. Aidan bit into one and actually decided that he liked them. I noticed that the meat was a little pink but Amelia eat nearly raw beef all the time in France so I didn’t stop him. Aidan devoured two huge meatballs and asked for another serving. All in all he ate nearly four of them. On our way back to the hotel Aidan said his stomach hurt. Aidan is always complaining about one malady or another so I blew him off. Back at the hotel Aidan happily climbed into bed with me, a treat I had promised him earlier in the day. We turned off the lights and settled in for some much needed sleep.

Our room had a “view” of a small canal. Mind you, it was only a view if I literally stuck my head and shoulders all the way out the window and looked down. Mostly I had a view of the next building. The unadvertised consequence of a canal view, however, was the sound of boats racing through the canal with their radios blaring well into the wee hours. When I finally fell asleep it was well past midnight.

About 2 am I heard the sounds of retching. I needed to act fast lest I spend the rest of the night sleeping in a vomit covered bed. Aidan was on the other side of the bed and I couldn’t reach him. “Bill, get him to the bathroom” I yelled to wake up my other half. Bill grabbed Aidan and raced to the bathroom but didn’t quite make it. The poor little guy proceeded to puke for quite a while then fell asleep on the cold hard floor. When he woke the next morning he cuddled up to me, “I don’t think I should have eaten those meatballs,” he observed. “I guess not buddy,” I answered. I think we can safely assume that Aidan has had his last culinary adventure for a long while.

In contrast to Aidan, Amelia will try anything and is virtually obsessed with eating. When she was an infant, the staff at her daycare nicknamed her “Meals on Wheels” because she loved to eat so much. And she is still deserving of the moniker. So far she has tried everything from anchovies to octopus. In fact she’s driving us a little crazy, “What are we eating?”, “Where are we eating?”, “Can I have gelato?”, “When are we going out for gelato?”, “What time is our reservation?” and on and on.

Last Year's Italy Trip, cont.

2008-08-14T09:05:00.004-04:00

Back to our regularly scheduled vacation ...

All I Want is a Room Somewhere

In planning our trip with my dad and niece I tried to keep our costs to a minimum. Given that this is high season, this presented some challenges. In Florence I booked us into a youth hostel. When we checked in Bill, the kids and I were directed to a dormitory style room with two bunk beds. The bathroom was so small that the automatic faucet went off every time I walked into the bathroom. The “shower” consisted of a shower head in the ceiling. When you turned it on, the entire bathroom -- the toilet, the sink, the entire floor -- was soaked. “It’s only two nights,” I thought to myself, “No big deal.” After a day of sightseeing I returned to the room to shower while the kids went to the room in an adjacent building where my father and niece had their room. Now I should preface this with information about Italian towels. I don’t know why but they seem to have a preference for towels with the look, feel, and absorbancy of a tablecloth. Toweling off after a shower is a wholly unsatisfying experience here. At the pool I have noticed everyone uses a terry cloth robe so I know they are aware of terry cloth, but somehow this has not resulted in widespread adoption for bathing purposes. Much to my surprise and contentment, the hostel had enormous terry cloth towels. I could have wrapped the thing around me three times easily. So I took my shower, washing Florence’s dirt from my body and soaking the entire bathroom, and happily laid on my bed in that terry cloth towel. It was delicious.

After dressing for dinner, I headed to my dad and niece’s room where I discovered that they had a TV, computer with Internet access, beautiful bathroom and, the coup d’etat, air conditioning. Given that I had made the reservations, I was feeling just a little bummed out. Bill, the kids, and I sweated our way through that first night and woke a little more grumpy than usual.

The second day we were moved to a bigger room with a bigger bath but all the other features were the same. This time we had a room overlooking the garden, which seemed like a nice touch until we discovered that “quiet hours” were not going to actually be enforced by anyone. A very loud Spanish woman was in the room next to us and most have said “Encanta” a hundred times while talking with a friend. Ninety minutes past the posted beginning of quiet hours, everyone was still partying. Bill finally went down at 12:45 to ask when quiet hours would start. “Soon,” he was told. Even my narcotics weren’t able to overcome the noise. The next morning we woke up especially grouchy. When I told my dad about the noise he replied, “I didn’t hear anything.” I wanted to clobber him.

I was really worried when we headed to Lucca where we were booked into another hostel. Fortunately Lucca doesn’t attract the partying type so it was a much quieter stay. The rooms were very nice with loft beds for the kids, a TV, and an ok breeze. We were back to tablecloths towels but generally pretty comfortable. In Orvieto we splurged on a real hotel that had air conditioning. It was glorious! I slept like the dead. And in Rome, where we stayed in a convent, we hit the motherload: A/C, a TV, real shower, and terry cloth towels all for 100 euros, a true bargain in Rome. I always gripe about A/C back in the states because it is so overdone but I actually miss it every once in a while here, especially after a long, hot day of sightseeing.

A Model of Inefficiency

At the risk of sounding negative I will make the observation that if modern day Italy is any indication of life in Ancient Rome, itìs no wonder that the Roman empire fell. I present the following examples:

The portinaio

When we first arrived at our dorm, we were greeted by an affable portinaio (doorman). Thankfully, we had two Italian women from the laboratory with us to translate because he spoke absolutely no English and I barely speak any Italian. During the tour he asked us how often we wanted the rooms cleaned. We had been told the room was 20 euros a week with cleaning so I asked if there was a difference in price depending on the frequency of cleaning. One of the young ladies translated and he shrugged dramatically and gestured with his hands. He told her no worries about the cost. So I asked to have the rooms cleaned daily. A week later we were told that the cost of the cleaning was 10 euros per day. I asked if I could have the cleaning just once a week. This was, of course, impossible. I could have cleaning every day or every 15 days. Those were my only choices. I suddenly knew how the kids feel when I make them choose between two undesireable options. Naturally, I choose the 15 days. Then a week later someone, god knows who, decided that since they had changed the price of the room on us after we arrived that we could have the room cleaned once a week. I don’t even bother to try and keep up anymore.

The portinaios are here 24 hours a day. They change about every 6 hours and some are more helpful than others. The advantage of the frequent change is that I can often get one of them to do something that another one will not. At the heart of it, I think Italians are really anarchists. They have rules, but no one seems to follow them. Or they merely invoke them when it serves their purposes. While everything is impossible, it is simultaneously possible if you ask the right person, at the right time. As one tour guide told me, “Things are forbidden, but this is Italy where things are only a little forbidden.” So, we have learned to work this to our advantage. My father and niece were unable to keep their dorm room b/c the building was full as of June 30th. So, we let them stay in the kids’ room while the kids slept on the floor in our room. We got away with this for two days. Then at 12:45 in the morning our phone rang. I could hear the portinaio tell Bill to come downstairs. “What could it be at this hour?” I wondered. Bill was gone for at least 20 minutes and I was starting to worry. Finally he returned and told me the portinaio wanted to know if my father and Alyssa were in room 6. Why this was an burning issue out of the blue at 12:45 am remains a mystery. Bill explained that they were not and that we had returned the key 10 days before. The interrogation proceeded with numerous confirmations that they were not in room 6. Finally the portinaio asked where they were and Bill confessed that they were in the kids’ room. The portinaio raised his finger to his lips and assured Bill that this would be their little secret. We had no other questions about them for the remainer of their stay despite the fact that they traipsed in and out of the portanaio’s office several times a day.

Bill’s customs ordeal

Bill came to Italy to learn a particular technique from an immunologist. He shipped the specimens that he planned to work with via FedEx before leaving the states. They arrived in Milan the following day and have been there ever since. They are stuck in customs and for two weeks there was virtually no explanation of why they were there, how long the process of clearing them would take, and when, if ever, they might arrive. Finally, Bill was told that he had to pay 134 euros to get them out of customs. There was no itemized bill, just an amount. Bill’s colleague was able to get an itemized bill but over half of the fee was vaguely attributed to “customs” while the rmaining charges were for a review of the specimens and other things. The university here requires 10 days to generate a check so they cannot pay for it and customs does not accept credit cards. So we have to have our bank in the US wire the money. Then they will release the specimens. Bill has been able to accomplish almost nothing in the laboratory since he arrived. The upside of this is that he has been able to travel with us more than we expected and can often enjoy our daily trips to the pool.

The Bus Depot

The bus terminal is a fine example of an “overstaffed” establishment. On any given day there are 3-7 employees standing in the bus terminals ticket/information area. I have never seen more than 2 people actually selling tickets at any time. One day I was there in a line about 7 people deep. One man was working while 4 others were standing around talking. An older women got out of line to ask one of the chatty fellows a question and he shooed her away and told her to get back in line. Geez, if a little nonna (grandma) can’t beat these guys into submission I won’t even try. Another day Bill was in one of two lines at the station. He assumed that someone would be returning to man the window for the other line since people were standing in it. At one point the man manning one window moved over to the other window and helped a few people there. So, essentially he just alternated windows. Seems like a single line would have made more sense.

I’ve also watched employees sit and talk on their cell phones while I’m waiting in line on numerous occasions. Fortunately I am rarely in a hurry so I can just accept this as a temporary reality, but I have learned never to assume that I can get something done quickly.

They are a curious lot, these Italians, capable of such remarkable culinary, fashion, and technological acheivements. But they do so at their own pace. It’s not worth it to get them to quicken their step: they won’t do it so I’m learning to march in time with them.

Music Mystery Solved!

2008-08-14T08:47:00.002-04:00

Apparently I am not destined for hell ...

Our neighbor Stacey sent this email to us after reading yesterday's post:

"Regarding the music Michelle referred to in her blog: Every night this summer, Mike and I sit out on our deck, looking at the stars, having our cocktails AND listening to his extensive collection of 70's music! We often forget to turn it off after going inside. Those outdoor Bose speakers really carry, so I think Michelle might be hearing our music. In the future, we will be more careful with the volume and cutting it off at a decent hour."

I always knew I had bionic hearing to compensate for the fact that I, literally, cannot see three inches in front of my face, but I had no idea it was that good.

A Little Night Music

2008-08-13T08:51:00.003-04:00

Sorry to interrupt our Italy trip but I need to post this today.

For the past several months I have noticed that I can hear music at night. Once we turn off all the lights and settle in for the night I start to hear it. At one point I asked Bill if he could hear it as well, though I already knew his answer.

Last week we discovered that I cannot tolerate the higher calorie forumula of the TPN. The 1500 calorie version requires an 1100 cc infusion overnight. Just that extra 100 cc was enough to cause edema in my arms, legs, and lungs. Given this and the fact that I can eat only very small amounts, the amount of weight I can continue to gain on TPN is very limited. This was quite a setback, physically and emotionally.

I finally convinced Bill that I really wanted a hospice consult. I first told Bill in February, weeks before the feeding tube was placed, that I could feel my life drawing to a close. Of those initial feelings, it was my niece’s christening where I felt it most acutely. I have always been the family photographer, the recorder of events. It is a role I played with great relish. Nothing pleases me more than capturing a candid moment forever. But on that weekend this beloved hobby felt somewhat like a chore. The camera felt heavy in my hands, especially with the telephoto lens attached. Just that little added weight made me breathe harder. As I looked through the lens at that little baby I could feel my heart breaking; I knew in my heart that I would not live to see the sweet little girl grow up.

The hospice consult was helpful in so many ways. We learned that I did not have to give up TPN to go onto hospice given that I am unable to eat much. What a relief to know that enrolling in hospice did not require me to starve to death! Bill and I spoke at length with the nurse about the orientation of hospice. Their goal is to make the patient as comfortable as possible and provide physical and emotional supportive care to the patient and the family. The goal is not the quantity of life but the quality of the life and the death. Speaking from his experiences, the nurse assured me that hospice uses many palliative approaches and that my comfort would be paramount. For the first time in months I felt like someone looked at death the way I did: as a necessary part of life.

To say that I have been uncomfortable for the past 8 months is the understatement of my life. The physical pain and discomfort from the feeding tube, the side effects of various medications, the unrelenting cough and retching, and the increasing shortness of breath have conspired to bring me to new depths of physical misery. Compounding the physical effects, the emotional and spiritual challenges have been, at times, more than I thought I could bear. And though I have been surrounded throughout this ordeal by enormous love and support from my husband, children, family, friends, and even strangers, I have felt a loneliness that I never knew existed. Only I can make the choices before me: feeding tube or no feeding tube, TPN or no TPN, experimental drug or no experimental drug, hospice or no hospice. Thus, I have to live with the knowledge that my choice has repurcussions that will ripple beyond me to my husband, my children, my parents, my brothers, my friends. By choosing to let nature take its course and end my suffering, I sentence them to theirs. I cannot win. I cannot win.

My friend Amy told me, “If your dying and being free of your suffering means that I have to suffer a little for you, then I am happy to carry that for you because I love you too much to see you suffer anymore.” Wise and loving words these are. But I don’t know that everyone feels the same way. How do I weigh my suffering against the suffering of my children? Who will ultimately suffer more? How do I know?

Among the literature that the hospice nurse left with me was a brief pamphlet on the stages of death. In one stage the dying person is said to have “one leg in this world and one leg in the next.” “Maybe that is what the music is,” I thought. It’s the next world.

I cannot make out the music. But there is something about it that worries me: It sounds like muffled 70s disco music. I swear it sounds like Earth, Wind, and Fire and Kool and the Gang. I was pondering this today. Lately I have started to embrace the idea that our spirit lives. With Mel and Amelia running around shaking my bed, it’s getting hard to deny it. But I am having a hard time with the idea of heaven as a 70s Disco. That sounds more like hell to me. Today it occurred to me, “Perhaps I should have taken that whole premarital sex thing a little more seriously.” But then I remembered that I confessed that to a priest the first time I was in Rome (he was very unkind and told me, “There are words in English for women like you”) so technically I am off the hook for that. I did miss Mass a lot. Perhaps I better confess that soon. Maybe then the music will switch to something a little more pleasant.

Last year's Italy travelogue, day 2

2008-08-12T08:55:00.002-04:00

I'm not sure if this will work but here is the link to the photos:

share.shutterfly.com/action/welcome?sid=8AbOWrlo0bt3zQ

Road to Nowhere

We live about two-thirds of the way up the large hill upon which the Centro Storico rests. In order to go anywhere, I have to climb 47 steps (yes, I counted them) to get to the scala mobile. On the first day I had to rest at the top of the stairs before I could go any further. The second day, I had to stop and rest multiple times during our walk about town and was clearly experiencing a lot of difficulty. At one point Aidan sat down next to me and started to cry, “I don’t want you to die, Mommy.” Good heavens, the kids are going to be scarred for life from this trip.

Bill’s colleagues keep telling us that everything is just a short 5 minute walk. I asked if there was a pool. “Yes, a bella piscina,” we were assured, “just 5 minutes from your place by foot.” It took Bill (with a healthy set of lungs) 20+ minutes to get there. I thought I was going to die on my first trip there. Fortunately, I have found a bus that gets me pretty close if they continue to keep the emergency door to the pool unlocked, preventing me from having to take a very roundabout way to get to the front of the building. Another morning Bill left me a note on a map that there was a big park named “Parco Percorso Verde” where his work colleagues said was right near the train station. I was dubious because there were a lot of parks in green on the map and Percorso Verde was not one of them. But I was game so I took the bus to the train station and wandered around. Which way to go? I had no idea so I picked a direction and walked. No park and it was starting to be uphill. I stopped a woman pushing a carriage and asked her where the park was. Her stunned expression was my first clue that I should have trusted my initial instincts. She explained to me in Italian that there was such a park and how to get there but did I realize it was 2 kilometers away? She told me to take a bus but didn’t know which one. So I asked a bus driver who very nicely told me which bus to take. The kids and I boarded the bus and I told the driver where I wanted to go. I was pretty sure he told me I was to get off at the stadium and then walk on foot. I have come to dread the phase “a piedi” because invariably it means I am going to be “a piedi” for a lot longer than I’d like to be. We got off at the stadium and the driver pointed me in the general direction. I was in the middle of nowhere. All I could see was a run down stadium and a camp site. But I kept walking, muttering to myself about a wild goose chase. “What’s a wild goose chase?” Amelia asked. I explained the meaning but found it very difficult to put into words.

Shortly thereafter we came upon a little bird sanctuary filled with, you guessed it, geese. I wonder how old the kids will be when they realize that the phrase “wild goose chase” is not intended to be literal. Finally, just beyond the sanctuary was a playground complete with Amelia and Aidan’s favorite climbing structure from our Paris days. I figure that total travel time including waiting for the bus was about 3 hours. The kids played for 40 minutes. When Bill arrived home and asked about their day they happily said that it was good. Thankfully they are easily satisfied.

We’ve had a few bus mishaps. The funniest was getting on the bus in the wrong direction after a grocery store trip. We ended up being on the bus for over an hour and had a scenic tour of the small towns around Perugia. The whole time I kept hearing the Talking Heads’ “Road to Nowhere” playing through my head. There was nothing else to do but sit back and enjoy the ride.

No matter how often I travel or where I go it comes down to this: roll with it. The more I try to control things or force a desired outcome, the worse things get. Best just to figure out how to make do.

Pane Envy
Traditionally, the bread in Tuscany and parts of Perugia is made without salt. I have been told that there are two reasons for this. First, when theses areas were papal states, they was a tax levied on salt that understandably reduced consumption. Second, they eat a lot of goat cheeses and salumi here, both of which are very salt. As such, salty bread is just too savory. Personally, I cannot imagine why this tradition has not been left behind. Saltless bread has a horribly flat flavor. The only way I can eat it is by dipping it in olive oil and salt. Apparently I am not alone in my distaste for saltless bread. I arrived at the panetteria yesterday late in the afternoon and discovered that they were completely sold out of all the salted varieties, yet the shelves were filled with loaves of unsalted bread. Given that it was already 4:30 I wondered if all this bread would merely be tossed away.
I grew up in a neighborhood where there were several Italian bread bakeries. The closest one, DaPalma’s, was just a sort walk from my parent’s house. Once I was old enough to cross the street, my mom would often send me to pick up her order. They used to keep this ring loaf out on the counter and it was only 35 cents. So I always had enough money left over to buy one. As I carried the bags of bread home I would munch on my ring loaf and devour it before arriving back at home. I loved that bread with it’s crispy crust and soft center. It was delicously perfect in its simple and unadorned state. I always took the availability of good bread for granted until I moved to NC. In NC it seemed that no one knew the meaning of good bread. Even the places that sell decent bread at a premium price pale in comparison to the bread bakeries of my childhood. It’s not so much the flavor that is off; it is the texture. Here in Italy I am in my glory, good bread is everywhere. This was especially the case in Rome where the bread always contains salt. At restaurants, it takes a lot of self control to limit my bread consumption once they place that basket on the table. At one restaurant I ordered minestrone. The waiter brought me a large bowl flanked my two large peices of toasted bread. They were so delicous and so reminiscient of the bread at ate as a child that I felt a little misty. I felt like I was transported back to Leon Street with my brown paper bag of fragrant warm rolls and my ring loaf in hand while I greedily munched away. That bread felt like home.

Roaming

My father and niece, Alyssa, arrived about a week after we did. They joined us in the dorm in a room with a loft and a spectacular view of the Umbian countryside, all for the bargain basement price of 20 euros a night. We spent their first few days in Perugia and Assisi before heading out for a whirlwind 7 day, 5 city tour.
Our first stop was Florence. Florence is overrun with tourists in the summer. In fact it is so overrun with tourists that we literally heard more English spoken in the streets than Italian. Bill and I visited Florence 7 years ago, but the city felt very different to me on this visit. Perhaps we were dazzled by the works of art at the Uffizi and Galleria on our last visit. But on this trip, Florence disappointed. The buildings are dirty and in desparate need of new paint. By afternoon, her streets are filled with garbage. By nightfall, she remind me of a washed-up Hollywood starlet still managing somehow to benefit from her long gone successes. Yes, the facade of the Duomo is an arresting site, but the interior of the church is nothing special. There are lovely places within the city, like the Piazza della Signoria and the Piazza della Republica, but I felt like it failed to live up to my expectations. In some ways I felt sorry for the city and its citizens. By nightfall, streets cleaners were out and about and in the morning the city was noticeably cleaner. But by afternoon on our second day, the streets were filthy again. The city is so abused by the sea of tourists that descend upon it every summer. Any effort to keep up appearances must feel like a wasted effort.

Despite our disenchantment we enjoyed our visit. We did the sightseeing highlights on our first day but omitted the museum visits because we felt the kids would not have much patience for hours of art work. On our second day, we crossed the Arno and spent part of the afternoon in Boboli Gardens, which was virtually devoid of tourists and offered a shady retreat from the intense heat. Then we went to the new Leonardo DaVinci musuem, which is geared (no pun intended) for youngsters and intended to be fully interactive. Apparently the museum creators had misjudged how well the machines would hold up to rigorous use by young children because several of the 40 machines had been changed to a non-interactive format since its recent opening. And Aidan was chided twice for his use of one of the machines even though he wasn’t being inappropriate in anyway. Nonetheless the museum was a perfect diversion for the kids after a long day of sightseeing. Aidan was particularly intrigued by the disturbing impliments of distruction that DaVinci had designed for use in battle while I found they had a way of tainting my view of the inventor.

After Florence, we set out for Pisa. I have heard some people say that Pisa is a waste of time, but I love it. The Piazza dei Miracoli is one of the most picturesque places I have very seen. The Duomo is stunning both inside and out, the baptistry is beautifully lit by the sun and has astounding acoutic qualities, and the Campo di Santo, which weathered well heavy bombing during WWII is a peaceful (and cool) respite from the crowds. The kids, of course, loved the Leaning Tower. The price to climb to the top is pretty exorbitant so I recommend climbing cheaper towers elsewhere. Aidan insisted on purchasing a cheesy replica of the square; I suppose he can put that next to his Eiffel Tower (and the Colessium that he bought in Rome). Soon he’ll have a nice collection of tchotchkes.

After a few hours in Pisa we sent off for Lucca. Lucca is northeast of Pisa and a charming place. Thanks to a largely peaceful and prosperous history, Lucca’s medieval walls remain intact. Lucca is an essential stop on any family vacation in Tuscany. While France seems to be very oriented toward the entertainment of children – there were carousels and playgrounds in most places we visited – Italy seems less so. They enjoy children but it is not clear to me how they keep them busy. Lucca was very different in this regard. The interior circumference of the city walls is a 3 km park with a path for walking or biking and several playgrounds. Bicycles are available for rent and the kids enjoyed spending the morning with the wind in their hair. Bill and I rented a tandem, which made it possible for me to go along given that Bill was doing most of the work. The city also has a carousel, the only one I have seen thus far, and a tower that offers spectacular views. It was a perfect place to enjoy a couple low key days.

After Lucca, we took off for Orvieto. By this point, we were all adept at train travel. The kids were suprisingly self sufficient with their bags and well behaved on the trains. Thank god for that portable DVD player! We disembarked in Orvieto and caught the funicular that climbs to the city center far above the train station. The kids are getting increasingly hard to impress, but this was a novel experience. Orvieto is a small but beautiful town in southern Umbria. It has a lovely cathedral. It also has the Orvieto Underground tour that takes you through the caves underneath the city where they used to raise pigeons, press and store olive oil, and store wine. The kids really enjoyed that tour. My favorite spot was the small 12th century Chiesa (church) di San Giovanni, tucked away in a corner of the city. Inside it contained many frescos from the 13th and 14th centuries.

I garnered a lot of attention in Orvieto when I had an asthma-like attack during the evening passegiata (the evening stroll that the locals take around 7ish every night). A little old lady made one of her friends vacate her spot on the bench and told me to sit there. For the next 15 minutes, while I pulled myself together, the little old ladies spoke to me in Italian either oblivious to or regardless of the fact that I could understand about 20% of what they were saying. They did decide that I had asthma/allergies and that I should go directly to the pharmacy. Even when there’s a language barrier and old Italian woman will make her advice to you clear.

Our last stop was Rome, a chaotic and overwhelming change of pace. We spent our first afternoon touring the Colessium and even succumbed to having one of those cheesy photos with a gladiator taken. We shouldn’t have built up the whole gladiator thing with the kids. Then we took a leisurely walk around the 2000 year-old ruins of the Palatino. I don’t know how many times I had to tell Aidan to stop chipping away at the mortar between the bricks in the ruins. I kept thinking to myself that the ruins had survived 2000 years but I wasn’t sure they’d make it through the afternoon. Finally someone from the staff yelled at him, which proved far more effective than my admonitions. From there we took a bus to the area around the Pantheon and Piazza Novona where we had dinner and some amazing gelatto/sortbetto. There were easily 70 flavors in the place and Aidan still ordered Fragola (strawberry). Amelia is a little more adventurous but seems to favor rasberry and banana. I’m happy as can be that I actually have a choice of sorbetto flavors, something rarely available to me in the US. And Bill, let’s just say he may be in serious need of a diet when we return.

On our second day we took one of the double decker buses around the city and the Vatican. Our last day turned out to be the Feast of Sts. Peter and Paul so virtually everything was closed. We did manage to make to make it to a bakery that carried specialties from Puglia (the heel of the boot), which is where my grandparents were born and raised. They had a dizzying array of cakes and breads and I couldn’t resist the urge to take a few photos. Thankfuly I got a few taken before I was told to put my camara away. Though I had to wonder why they cared about the photos, it’s not like I was taking photos of their family recipes. After a brief walk around the area, we headed to Rome’s Termini train station. It was much nicer than I remembered and even had an English language bookstore. Two hours later we were back in Perugia, happy to rest our heads at “home” again.

Pack Your Bags

2008-08-11T11:34:00.003-04:00

I'm taking you to Italy. We spent last summer there and, while it was a very physically demanding trip for me, we made many wonderful memories during our time there. We also experienced a lot of hilarious adventures. I revisit the trip often in my mind to escape sadness, boredom, etc. I figure every one needs a little escape. So I will be sending pieces of the travelogues I sent out last year over the next week or so and we can all live La Dolce Vita.

The Unexpected

Our trip began with the discovery that we had exceeded the luggage maximum for two of our bags. At first we thought we merely had to pay a fee but we then discovered that we could not, in fact, put our bags on the flight. Before we erupted into panic, the clerk informed us that American Airways sold extra bags for just this reason. I raced to American Airlines to purchase a bag where, of course, I discovered that they only take cash. So, off I went to the ATM and $30 later I had another (flimsy) bag. We rearranged our baggage while I was kicking myself for deciding that two of our bags should be Amelia and Aidan’s tiny suitcases so that they could be responsible for their own bags when I traveled alone with them.

Amazingly our first flight was almost completely uneventful. The only incident was Amelia spilling water all over Aidan half-way through our first of three flights. Thankfully I had packed a change of clothes for both children so a crisis was averted. (When Aidan returned after changing and handed me only wet shorts, I asked him where his underwear was. “I didn’t have any on,” he answered. So we had to have a little chat about going commando.) We landed in Toronto and began whittling away at our 5 hour layover. I had been dreading this part of the trip more than anything. We tossed around the idea of going into the city, but decided against it. After having a mediocre lunch, the kids discovered two bronze tiger statues. Judging from the padded flooring underneath the statues, they were intended as playthings. The statues were like boxes on Christmas morning: they were little more than a spectacle to adults with our limited imaginations, but to two kids they were ripe with possibility. By the time they were through enjoying the tiger pair, we were halfway through the layover.

We made our way to the Air Canada lounge that Bill could access through his US Airways Gold Membership. Now I should preface all this by admitting that I have little sympathy for Bill’s travel-heavy schedule. The way I see it, he flies business class to some of the greatest cities on earth, stays in swanky hotels, and enjoy sumptuous meals while I’m at home feeding the kids mac-n-cheese. He should have never let me in on the lounge experience because whatever little sympathy I had for his travel weary bones evaporated immediately. What a place: free food, free booze, free magazines & newspapers, comfortable chairs. It was like being in the luxury box after spending your whole life in nosebleed seats. Well, I’m assuming that is what it is like having never actually been in a luxury box. The kids settled into a movie on their portable DVD player and Bill and I settled into our naugahyde chairs.

While we were sitting there I mentioned to Bill that my friend Julie had asked me how his recent trip to Australia was. I had to admit to her that I had no idea because Bill and I had not actually had a conversation beyond, “Do this, Do that” since he had returned the week before. We had been so busy preparing for the trip that we had not actually had a conversation in nearly three weeks. So we enjoyed two hours of catching up while we waited for our next flight.

We boarded our flight to Frankfurt and were pleased to discover that it was a brand new jet with personal entertainment centers. Other than incredibly slow cabin service (they didn’t turn out the lights until over 3 hours into the flight) and my missing dairy free meal, all went well. Aidan slept for over 4 hours, thanks to Atarax (we are not above drugging our kids so when they turn into potheads we’ll know who to blame) and Amelia watched A LOT of TV. We deplaned tired and hungry but glad that the bulk of our trip was over. After a three hour lay over in Frankfurt and a seamless flight to Florence, our 21 hours of traveling was over.

We checked into our hotel and immediately set out in search of the Duomo and gelato. I have already been to Florence and still found the sight of the Duomo overwhelming. It is such an imposing building on such a small square. In some ways it is unfortunate because it is nearly impossible to view it unobstructed. But the geometric patterns of white, green, and pink are simply stunning. Well, at least they were to me, the kids were less than impressed. Who cares about some old church, where’s the ice cream? So we followed their lead, ate some ice cream, and returned to the hotel for much needed sleep. This was an amateur travel mistake: failing to resist the need for sleep instead of immediately getting on local time. We paid for this choice later than night when Aidan was up coloring in the bathroom until the wee hours of the morning. After our nap we headed out for a terrific meal on a vine covered terrace and all was well.

The real fun started the next morning when we had to get nine bags from our hotel to the train station. We discovered upon arrival that I cannot walk and carry/drag luggage simultaneously. This did not impose a problem given that we took a taxi directly to our hotel. Our hotel was just across the street from Stazione Santa Maria Novella, but what a street. We had to cross multiple lanes of chaotic traffic. Aidan and I crossed first carrying several small bags and dragging suitcases. Bill carried the bigger bags in multiple trips while Amelia stood guard with the remaining bags. By the time we got to the top of the stairs (there are no ramps on the left side of S.M.N, plan accordingly), I was struggling to breathe and generating stares from fellow travelers. With the recent TB scare perhaps they thought I was a carrier. I have to admit that sitting on the station stairs I was feeling a little panicked. I was embarking on a 7 week journey through Italy and I couldn’t walk and drag a suitcase at the same time. “How exactly was this going to work?” I thought to myself. Not to mention the far greater realization that my lungs had clearly worsened considerably in the 16 months since we had gone to Greece.

We managed to get our many bags onto the train to Perugia. The kids settled into the nth viewing of Shrek 2 on the portable DVD and I tried to recover from the morning’s overexertion. In Perugia we were met by the secretary and graduate student of Bill’s colleague Lugina who thankfully transported us to our humble abode (more on that later). As we traveled through the town, it became painfully clear that Perugia was the hilliest place I had ever seen. It made San Francisco look like Kansas. “How am I going to manage with my shitty lungs?” I thought fearfully as I glanced out the car window. I have always loved to travel and generally crave the unexpected when I am overseas, but for the first time in my life I wished I had never left home.

Back in Time

Our housing here was arranged through the university and in typical Italian fashion we received virtually no information about the arrangements. We had been told it would cost 20 euros a week which seemed to be (and, is in fact) too good to be true. We had been told there was A/C which, it turns out, is also too good to be true. We are living in a dorm. The kids have one room and Bill and I have another. Fortunately, we are in a suite together with a small “kitchen.” Well, kitchen is a gross overstatement. There is a cooktop, 2 dorm refrigerators, and a small sink. But there is no oven, no dishes, no kitchen supplies of any kind. We purchased table setting for 6, a 2-quart saucepan, a frying pan, silverware, and the cheapest toaster oven we could find. The toaster oven gets so hot I’m afraid it will melt the plastic on top of the fridge. As you can imagine, cooking dinner nightly is a challenge but we seem to be making do. There is no key for the suite door so I have to go to sleep every night hoping the kids don’t wake up and wander about the place and, similarly, that no one else wanders into the suite. In America this would make me crazy, I figure there are fewer psychopaths here.

There’s nothing like living in a dorm to make you realize how drastically life has changed in 15+ years. Bill and I spent the first three nights sleeping separately in our twin beds. We are far too old to even think about spooning together like college kids. Eventually it dawned on us to rearrange the furniture so that we can at least sleep next to each other’s beds. Our dorm mates can be a little rowdy into the wee hours and the birds wake at 4:30 to feast on the cherries hanging off the tree outside our window (which must stay open because there is no A/C). Thanks to Robitussin with Codeine, I am sleeping anyway. Bill could sleep through the second coming of Christ so the noise is a non-issue for him. And something is biting me at night, I’m hoping it’s not fleas.

So, needless to say the first few days have been a little bumpy …

Despite the less than ideal living quarters, the dorm is centrally located near the Centro Storico and we can pop up to the city center on the scala mobile (outdoor escalators – I was not shitting you when I said it was the hilliest place that I have ever seen – thankfully there are a lot of them here) to enjoy the evening passegiata. While Perugia’s main streets are pretty desolate in the heat of the midday sun, the town comes alive in the early evening when the locals enjoy their pre-dinner stroll. There are two universities here: the University of Perugia and the University for Foreigners. Consequently, the town has a very young and international feel to it. Evening is really the time to enjoy Perugia. Given Perugia’s perch setting, the view from the city center is breathtaking.

Oxygen

2008-08-09T10:24:00.005-04:00

A recently popular song captured my attention. I liked it so much that I finally caved in and learned to download music from the internet. I tend to adopt new technologies very late in the game and need a really compelling reason to plunge into mastering a new device or gadget of any kind (unless it's related to cooking, in which case I must have it immediately).

The song was "Bubbly" by Coco Caillet. I like the song because the lyrics remind me of when Bill and I were dating.

I've been awake for a while now
You've got me feelin' like a child now
'Cause every time I see your bubbly face
I get the tingles in a silly place
It starts in my toes
And I crinkle my nose
Wherever it goes I always know
That you make me smile
Please stay for a while now
Just take your time
Wherever you go

Every time I hear the song I feel transported back to our courtship and the way Bill always made me smile and laugh. He literally came into my life without bringing any angst or bad feelings at all. We were always so happy together.

Whenever the song came on the radio, Bill turned the volume up so I knew that Bill loved the song too. Wanting to get the song for Bill without having to drag myself to Barnes and Noble, I braved the iTunes store. After listening to samples of the entire album I decided to download it en totale. Then I even went a step further and burned a CD (all together now: "Ooo! Ah!").

The first track on the album is called "Oxygen." I love the song, but the lyrics make me sniffle because I want so much to make Bill this same promise but I cannot.

Oh baby if I was your lady
I would make you happy
I'm never gonna leave,
Never gonna leave

It makes me sad when I think of how far Bill and I have come and the amazing marriage we have built together. It seems so unfair that my disease will take that away from us. But, secretly, I know scleroderma really gave it to us.

Kirk Douglas published an essay in Newsweek's My Turn column this week (they never publish my essays when I send them). In it he wrote, "The greatest dividend to old age is the discovery of the true meaning of love. When I was younger, my sense of love was not very deep ... Growing older brought me closer to my wife. It was like looking at her for the first time. I got to know who she was, and she really got to know me." I used to pine for the fact that Bill and I would not grow old together. In fact, I cried about that just last Sunday with my friend, Meade, who brings me communion when I cannot make it to Mass. But after reading Douglas' essay I realize that we have grown old together. Our lives just got compressed into a smaller period of time, and we are experiencing all the benefits and wisdom of old age but doing so far ahead of schedule.

I realize now that a chronologically shorter life is not necessarily incomplete. I once heard a sermon about the difference between the Greek Kronos, which refers to chronological time and Kairos, which I have heard referred to as "God's time" or an undefined period of time in which something significant happens. The former is quantitative; the latter is qualitative. As I sit here writing this I am struck but how powerful the concept of Kairos can be. What if we switched our conception of a lifetime from something defined by a quantity of time a la Kronos to a period during which something significant happens a la Kairos. Wouldn't that change all of us dramatically? I could stop mourning the time I will "lose" and focus on the time I have had, the time I still have. That's a powerful shift.

Also on the topic of oxygen, I am now on oxygen at night and it seems to be helping me sleep a little better. It doesn't help my shortness of breath during the day, but it's nice to at least have the nights be a little better.

A Whole Lotta Shakin’ Goin’ On

2008-08-08T09:36:00.005-04:00

Those among you who don't believe in spirits may not enjoy today's post much. I've always been a skeptic, but I am no longer doubtful.

I had an appointment with my psychologist this past Tuesday and I asked Bill to go with me. Over the past several months I have noticed that my mental health plummets with every physical downturn, leaving Bill to prop me up until my body returns to some semblance of normalcy. I hoped my therapist could help Bill and me develop some coping skills to prevent the inevitable downturns in my physical health from devolving into mental tailspins.

Among the many things discussed at my appointment was the need for me to create a safe space where I feel peaceful. Fortunately we are already in the process of creating that oasis for me. Thanks to Dave and one of his friends, the room in a lovely shade of green, reminiscent of shaded stalks of bamboo. We recently received the overstuffed chair and ottoman we ordered months ago. The fabric is a rich cream with red, orange, yellow and green Oriental poppies. In this large chair I look like Lily Tomlin as Edith Ann (see: http://www.youtube.com/watch?v=ocBO0fr1Ui4 to revisit this character). I can easily fit one of the kids into the chair with me, which makes for lovely snuggling time. We picked out cabinets and bookcases back in January, but the room preparations stalled because the money we set aside for the room went to Duke Hospital for my winter and spring adventures. I have spent money in far more enjoyable ways.

Out of the blue my mother called me last week and said, “Your Dad and I want to give you the money to finish your home office.” It is so like them to give what they have to their children rather than spend it on themselves. All our lives, they went without so that we could go to private schools and colleges. They gave us just the right amount, providing the things that were valuable without spoiling us or indulging us in every fad. This part of parenting they executed perfectly, far better than Bill and I do in our own family.

I was overcome by the gesture but quickly recovered and ordered the furniture. I started to dream of finally having my own sanctuary. I placed pictures in the frames that I bought for the room many months ago, threw away the accumulated clutter, and organized neat stacks of the items that I needed to keep.

From the garage I carried the framed quote from Dwight D. Eisenhower that used to hang in my office at work, “Every gun that is made, every warship launched, every rocket fired signifies, in the final sense, a theft from those who hunger and are not fed, those who are cold and not clothed. This world in arms is not spending money alone. It is spending the sweat of its laborers, the genius of its scientists, the hopes of its children.” Bill and I found the quote in an antique story when we were dating and it summed up our shared worldview perfectly. I always hung it in my business offices as a daily reminder of my desire to use my work to better the lives of children.

I described the room to my therapist and also mentioned that I planned to create a little altar to contain the various amulets that friends have given to me over the years and during the recent worsening of my illness. They include, among other things, my grandmother Amelia’s Italian bible and crucifix, a small framed quote painted for me by my friend Angela when my house burnt down in graduate school, a charm of the Chinese goddess of mercy from Nina, a crystal given to me by my friend Kim who had received it from her mother, an angel statue from my friend Jennifer, and many more.

“Ok, so you have a sanctuary, and you have sacred objects,” my therapist observed, “Now you need a guide.”

The appropriate guide is obvious to me: my grandmother, Amelia. While I never knew my grandmother in any real sense, I know that I carry her with me. I feel her in my ability to sew despite never having been taught as if her seamstress genes just became manifest one day. I must have also inherited her genes for candor and irreverence, her love of food, and her predilection for cursing. And, unfortunately, I also inherited the gene or cluster of genes that would ultimately sentence me to suffer from pulmonary fibrosis, the disease that took her life. Her fibrosis came by way of sarcoidosis rather than scleroderma but the result was the same nonetheless.

Sometimes I feel like I am on some a journey that parallels hers some 40 years later. My grandmother became an American citizen but she always longed for her family back in Italy. When she retired, she went to see her family a few times. On what was fated to be her last trip, she disembarked in Philadelphia where my mother greeted her, “I knew as soon as she walked of off the pier that she was sick,” my mother often told me. But I guess my grandmother withheld information or made light of it so as not to worry her pregnant daughters. I thought of my grandmother so much last summer when I was struggling in Italy; this time I would be the one coming home to America very ill.

When I was 4 years old I came down to breakfast one morning, “Mom, Grandma came to see me last night.” “Uh-huh,” my mom replied, thanking God that I started kindergarten a year early so she didn’t have to put up with my incessant chatter all day long. “She was wearing a really pretty pink dress,” I continued. My mother’s ears perked up, “Can you describe the dress?” she asked. Apparently I described the dress my grandmother was laid out it -- the lace, the buttons, the design -- down to remarkable detail. My mother was stunned because I was an infant at the time and there are no pictures of the viewing. “Did she say anything?” I told my mother that Grandma told me who she was and that she would lie down with me for a little while, “Then she got up, put on her glasses, and told me to be a good girl for Mommy."

"Then, she said that she would come back to see me someday.”

I, of course, have no recollection of this happening and spent my entire childhood petrified that Grandma was going to pop up when I least expected her.

Over the past 6 months, in my physical pain and mental despair, I would often call out to her, “Grandma, please come to me. You said you would come back.” But there was never an answer. Six weeks ago, that changed.

On the drive home from the therapist I turned to Bill, who seemed out of place in the passenger's seat.

“I told you about the shaking, right?”

“No.”

Bill does not entertain beliefs in ghosts or spirits. This past weekend we were discussing what life would be like when I am gone. I promised him that my spirit would stay with him until he fell in love again, “Then I will leave you alone, unless she is a bitch. In that case I will haunt both of you.” Bill laughed and shook his head at me. Apparently he thought the comment was made in jest.

So I told him my story, knowing full well he would think that I was nuts. One morning I overslept and Bill and the kids were gone for the day when I awoke. I felt the bed shaking. I assumed it was Watson so I called to him. But he was not in the room. “I have got to stop taking so many drugs,” I thought to myself. Then the bed shook again, hard. “Ok, that was not drug induced,” I got up and looked around the room but found nothing unusual. I lay back done again and, once again, the bed shook hard. “Grandma, is that you?” I called out and the shaking ceased.

I looked at Bill after finishing, fully expecting to find him smirking at me. Instead his face was poker straight, “When did this happen?” he asked. The first time? About 6 weeks ago. And three times since then. “It happened to me last night,” he confessed, “I looked at you and you were sound asleep and still. Then it happened again.”

We were both quiet for a few moments. There we were two scientists, both logical to a fault, facing the reality that we had both experienced the same supernatural occurrence in the same place at different times.

Then a funny thought crossed my mind. Maybe Bill’s grandfather, Mel, had met Amelia. I had this funny vision of these two little old people running around our bed like children at play, seeing who could shake harder and wanting desperately for us to know that they are here.

Yesterday morning when I awoke, someone was holding my hand. I assumed it was Bill, but when I opened my eyes I discovered that Bill was not in the room. I looked at my cupped hand: It was empty, but it felt like someone else’s hand was there. Then it happened again this morning.

Maybe I am crazy, but I don’t think so. Someone is with me, and I finally feel safe and settled.

A Good Death

2008-08-07T14:06:00.002-04:00

This isn't really the post I want to put up today. I wrote it a while ago and it introduces you to an essential character is tomorrow's post. So here it is. I just don't want everyone to think that I am sitting here perseverating about death today because I'm not.

Melvin Keiffer was my husband’s grandfather. An extraordinarily petite man with a shiny pate, Mel always wore a nice shirt, dress pants, and a smile. He grew up in Milwaukee, served in the Air Force during World War II, and worked as a accountant at the same bank his entire adult life. He was the husband of Esther, a woman I never really met because she was in the final stages of Alzheimer’s by the time I entered Bill’s life. Mel always said that Esther was the smarter one of their pair and I take him at his word; Mel probably never told a lie in his life. Together Mel and Ester had five children, a stillborn daughter followed by two girls and two boys. Their daughters became nurses; their sons became lawyers. Mel had 15 grandchildren and 5 great grandchildren.

Mel died in 2006 at the age of 89. While he was alive, he loved to bowl and golf. He even hit a hole in one well into his 80s and made it into the local newspaper. Up until the last 5 months of his life, he took only one medication. He still drove and road his exercise bike daily. His mind was as sound as ever and he could still chase after his great-grandchildren, albeit slowly. His appendix ruptured in January beginning a relatively short journey towards his death in May. Melvin Keiffer was a joy to be around and the only thing I ever heard him complain about was his diminishing ability to hear.

Mel never forgot a birthday. Each birthday, a card holding a $50 check arrived in the mail without fail. After Amelia’s first birthday, I misplaced the check and, therefore, failed to deposit it. Mel wrote Amelia a letter claiming that he did not know much in this "www.dotcom world' but that he balanced his checkbook every month. He then asked her to tell her parents to find and deposit the check. That letter still sits in Amelia's baby book as a reminder of this sweet man. Three days before he died, despite his failing heart, he dressed and walked to the mailbox to send my sister-in-law’s 30th birthday card. It arrived containing its predictable $50 check, as usual, on time.

The summer before Mel died he joked with me, “I think God forgot that I am still here.” Only perhaps he wasn’t joking. He had outlived almost everyone he knew. Nearly a decade had passed since his wife’s death. He was a deeply religious man and he was ready to move on to his eternal reward for a life well lived.

His heart began to fail in May and it was clear that his time on earth was drawing to an end. I’m convinced he waited until Bill’s youngest sister got married so as not to dampen the festivities. He spent his final days in his home, surrounded by his children and grandchildren. They looked at old photographs and enjoyed the photos of Jane’s wedding developed hurriedly so that he could see them. His children prayed with him and read from his beloved Bible. He was lucid and aware that he was dying. The day before he died, his eldest son sat on his bed and started to say some kind words. Melvin interrupted him with his usual sweetness, “You are sitting on my foot.” It was only in the last 24 hours that he slipped out of consciousness. He died in the company of his family and in his own bed, beautifully. He had the kind of life and death that we all want: full of joy, peace, and love.

Death is rarely what it could – or should – be. I don’t mean that death is sometimes untimely. What I mean is that it is poorly orchestrated and too often by well-meaning medical professionals who can lose sight of what a dignified passage should be.

I recently learned that the average time that a patient spends on Duke hospice care (including inpatient and outpatient care) is 15 days. Doctors wait until the last moment to refer patients to this service that could help more patients die peaceful and comfortably as Mel did as well as helping families with bereavement. When a friend was dying from scleroderma, it was obvious to everyone that he was in the last months of his life: he was wheelchair dependent, incontinent, and in multi-organ failure. He was being admitted to the hospital every 4 weeks or so. His wife asked his rheumatologist in September, “Should we think about hospice?” The doctor replied that he wasn’t good at talking about that. It was the last time hospice was every mentioned. Two weeks before his death in December, the doctors were scheduling him for a work-up so that he could be placed on a lung transplant list. He complained to me about it on the phone one afternoon. “Do you want a lung transplant?” I asked. “No,” he answered. “Then why are you putting yourself through this? Because they told you to?” I asked frustrated beyond belief, “Cancel the tests.” And he did.

The first doctor to tell my friend’s family that he was dying was Bill. He happened to stop by to visit him in the hospital on the way home from work. When Bill entered the room, he suspected strongly that my friend would not last the night. Bill sat with the family and explained that their husband and father was in his final hours; he made sure they knew what to expect and that they were all in agreement about resuscitation. The only other health care professional to address my friend’s death directly during the hospitalization was one of the nurses. He passed away about nine hours after Bill left the hospital.

It makes me wonder: perhaps an unavoidable death simply should not be managed by people whose self-concept comes from saving lives. Perhaps we should allow patients to self-refer to hospice care rather than relying on doctors to admit that death is approaching in a timely fashion that perhaps should be allowed to flow unhindered.

I cannot think of a worse place to spend my final hours than a hospital -- the glare of bright florescent lights; the sterility of baby blue walls, white sheets, and gray stainless steel and plastic; the care of strangers – is there a more unnatural environment? If it is at all possible I want to die on my own terms. I have asked my husband to do everything in his power to keep me at home where I can see the photos of my children against the aubergine walls of my bedroom. Like Mel, I want my family with me, including Watson, on my own comfy bed surrounded by the memories of life well lived.

"Waston"

2008-08-05T08:11:00.004-04:00

Our neighbor Caitlyn is a 7 year-old pistol. She's a petite thing but full of personality and gumption. She's one of the many kids in the neighborhood that feel more like nieces and nephews than they do neighbors. On Sunday she and her brother were out walking with our family and I was watching her in her gold flip-flops and "Girl Power" t-shirt. "I really wish I was going to see that one grow up. She's going to be something else," I thought to myself.

Her dad, Dave, is a teddy bear of a man: a barrel chested fellow with a heart of gold. When I was in the hospital getting my first feeding tube placed, Dave was one of my first visitors. He came bearing a vase of flowers and an offer: to paint the extra bedroom that Bill and I intended to make into my own special space. Bill had already painted it once but the color was too red and I felt like I was going to have a massive coronary every time I walked into the room. (Bill and I have different versions of how this mistake occurred. According to Bill, he painted two samples on the wall and I chose one of them. So he went and bought the paint. In my version, I never gave the final OK to buy the three gallons of expensive Ralph Lauren paint and felt like I should just go along with it one they were purchased. For months I tried to get used to the color but it was impossible.) Later that day Dave's wife, Cathy, arrived with every blue and green paint sample from Home Depot. I chose three colors to start and, after seeing them in the room and pondering their relative merits, I finally chose the one Cathy had picked in the first place.

An aside:

If you ever want to her Bill complain about me, just ask him what it is like living with me while I am choosing a paint color. My current record is 9 different possible paint colors on the wall at one time for over 6 months before finally making a decision. We recently painted the family room and I had him put 8 different colors on the wall and still had not made a decision after three months. Finally he said, "Decide today or I will." I picked one and then, after he and my brother spent a whole weekend painting, I decided I didn't like it. Bill's response? "Too damn bad. It stays."

The summers in North Carolina can be downright tropical (malaria was once endemic here) and often include almost daily thunderstorms. During one of these splendid storms, one of the large trees in our backyard suffered extensive damage. Bill and I were out with the kids the next morning and when we returned home I could hear a chainsaw in our backyard. When we looked out the backdoor, there was Dave taking care of the tree. How can you not love a man like this (and his wife who lets him spend his afternoon helping a neighbor)? After he and Bill finished, Dave came into the kitchen for a drink of water. He let Watson outside, "Go on, Waston," he said mimicking the way his daughter Caitlyn mispronounces Watson's name.

"That reminds me," Dave said, "The other night Caitlyn said, 'Waston likes to hump Zara.'" Cathy apparently then asked Caitlyn what that meant. "It means he wants to have sex with her," Caitlyn answered authoritatively. At this point, I started to worry. I have told the kids that they are NOT to explain sex to any other children because that's a parent's job. When Cathy asked what that meant Caitlyn replied in dramatic fashion, "I don't know, but Amelia does. If you want to know, you should ask her."