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.

http://healthaffairs.org/blog/

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

video

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

Friday, October 17, 2008

Michelle discusses her illness (June 2008)


video

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 (www.diaryofadyingmom.blogspot.com). Since late August, the site has been visited over 70,000 times, and it includes testimonials from hundreds of readers whose lives it has touched.

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

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

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

Final Farewell - by Bill Steinbach

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.