Monday, November 3, 2008

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

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.

Bill Steinbach

Wednesday, October 22, 2008

Two articles: One about Michelle and one written by her

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.

Tuesday, October 21, 2008

A Brother's Tribute

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

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

Friday, October 17, 2008

Michelle discusses her illness (June 2008)

Michelle's Obituary

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 ( 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 (, 300 Rosewood Drive, Suite 105, Danvers, MA 01923) or to the Duke Hospice Inpatient Care Facility (, 1001 Corporate Dr, Hillsborough, NC 27278).

Final Farewell - by Bill Steinbach

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

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.

Sunday, October 12, 2008

Michelle has Found Peace

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,

Thursday, October 9, 2008


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!

Wednesday, October 8, 2008

The Wonder Pill

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.

Tuesday, October 7, 2008

The Road to Happiness

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.

Monday, October 6, 2008

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.

Saturday, October 4, 2008

Mix Tape

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.

Friday, October 3, 2008

Spiritual Journey

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.

Thursday, October 2, 2008

Confessions of a Former Nurse

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 na├»ve 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.

Wednesday, October 1, 2008


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.

Tuesday, September 30, 2008

Hospice Update

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.


Monday, September 29, 2008


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.

Sunday, September 28, 2008

Carbon Footprint

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.

Friday, September 26, 2008

Hillsborough, NC

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.

Thursday, September 25, 2008

Hallelujah for Hospice

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.

Wednesday, September 24, 2008


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.