This diary was originally posted more than a decade ago. A subsequent update included material that was left out of the original, and a chance to meet one of the principal characters in the story. I’ve made a few edits before republishing today, as a way to remember my friend on his 64th birthday.
This could be a diary about health care.
This could be a diary about stem cell research. This could be a diary about muscular dystrophy. This could be a diary about a tragedy. This could be a diary about a triumph. This could be a diary about a promise. This could be a diary about a life. This could be a diary about a death. This could be a diary about Judaism. This could be a diary about atheism. This could be a diary about all of these things and more. And it is. And it is not. This is a diary about my friend who lived. I met Mark when we were in high school. He was one year ahead of me, and he cut a very distinctive figure as a sophomore, with his waist-length black hair and heavy beard. And his wheelchair.
As the school year went on we got to know one another. I can no longer remember how our conversations began; that was a long time ago. But I learned some things. Mark had Duchenne muscular dystrophy. I didn't know much about it, although I did know (as everyone in America with a television knew) that Jerry Lewis had a telethon every year. He told me a little about his diagnosis and about the nature of his disease. He told me that when he was a freshman in high school he already had long hair, and that he was in the hallway in his wheelchair when an assistant principal came and dumped him out of it. The administrator knew that "a kid in a wheelchair" was going to be coming to school, but couldn't map a "handicapped kid" onto the laughing longhair he saw in the corridor. Hence the dump. We lived in separate towns, so we met only at school. Mark was diagnosed with MD when he was twelve. For whatever reason, his family and the people in his community and school decided that he was not going to be limited by it. Mark’s sister Susan writes:
Mark would not have lived without all the care and love that he received from our family. We were there physically caring for him when no-one else would or could. A lot! Our parents' lives revolved around him and his care, and to some extent, his siblings' lives did, too. Our cousin’s, the K____’s made a commitment to help out, not by physically caring for him, but by being there in other ways for Mark. So, it is a story of extraordinary familial love and devotion.
Mark's sixth-grade teacher, T___ A___, carried him from place to place, making it possible for him to go on field trips, and making it possible for him to stay in public school:
"His parents said, 'He can't go' (on a class trip to the New Bedford Whaling Museum)," ... "I was just out of college, full of vim and vigor. I said, 'Why can't he?' I can remember carrying him up three flights of stairs."
Mark spent a lot of time outdoors. His brother Matthew recalls:
In his youth, Mark "was incredibly mobile" despite the limitations of the disease... "He would wear through (wheelchairs) in a matter of months. We used to push him down the railroad tracks in his wheelchair. "In high school, there was on ambitious teacher who thought (the class) should have a winter bonding experience wilderness camping in Vermont. They took Mark on a special sled."
link
I was very unhappy in high school, and one of my teachers recommended that I go to a summer program he was involved with. He said, more or less, "you'll meet people who will understand you there." My parents agreed to pay for the program, and in 1974 I took the bus to Rowe, Massachusetts for a session of "Rowe Senior High" . And there was Mark, in his wheelchair, rolling up and down the hills. Laughing. Looking around him at the woods, savoring the beauty and the friendship. Rowe Senior High was less about hiking in the woods than it was about building community; photographs from those days show us all as a bunch of hippie wannabes, all long hair, patched jeans and frizz. It was the categorical opposite of high school, and certainly the first time I'd ever really enjoyed the company of people my own age.
Rowe was where Mark and I became friends. He had lost some mobility in his arms, but he was still able to play guitar, to write, to craft exquisite geometric sculptures from thin pieces of balsa wood. We decided to wire the camp for sound, and under his direction I strung 1500 feet of speaker wire from the "Rec Hall" to every cabin. We would play music in the mornings, and in the afternoons when there was free time. He'd brought some of his record collection to camp, and so had I. We both liked jazz, and we'd broadcast Keith Jarrett's piano solos to wake people up in the morning. We talked a lot. Because his body was immobilized, Mark's imagination had to do the traveling for him. Mark described himself to me as an atheist, and we explored the meanings of this, even as we were both involved in crafting some of the "worship services" that happened every night in the Rowe Chapel, a beautiful old stone church about a mile down the road from the camp grounds. He began an annual "jazz festival" that featured an all-night menu of our favorite recordings; the two of us stayed awake programming music through the wee hours while those of our hippy-dippy camp-mates who weren't anti-jazz stretched out on the hard wooden pews and listened. Back at school, I became a familiar visitor at Mark’s house, where I got to know his family: his parents, Irwin and Joan, his older brother Matthew and his sisters Susan and Ruth. By the time I graduated, Mark had done a semester at Hampshire College, but the restrictions imposed by his condition made it impossible to continue. He decided to go into business for himself. He started selling stereo equipment; he had his basement bedroom converted into a stereo showroom, and I became his assistant. I'd help out on purchasing trips, handle some of the physical work, and help take care of Mark; sometimes I'd arrive at his house when he was just getting out of bed, and I became one of the people he and his family trusted with his care. He was a good stereo salesman; he knew a lot about the equipment, and he never lied about anything to anybody.
Mark knew that his disease was fatal. There was no cure for muscular dystrophy (there still isn't). Medical professionals had told his parents that he would probably not live to vote. He lost more mobility and strength. A customer once came in to buy a component and held out his hand for Mark to shake — only to wait for agonizing moments while Mark's right hand crept, inch by inch, across the table. We got around. We'd get a ride from someone, put the wheelchair in the trunk, and go to jazz clubs together. When we went to hear the great blind saxophonist Rahsaan Roland Kirk, we entered the club when he was in the middle of a solo. Somehow, Kirk recognized that a guest with a disability was arriving, and he nodded in Mark's direction and said, "welcome, brother." Considering that Kirk usually referred only to black people as "brother" and "sister," while calling white people "brotherettes" and "sisterettes," Mark felt he'd received a compliment. In 1977 Mark had lost sufficient mobility in his arms and hands that he abandoned his guitar. He sold it to me: a beautiful 1963 Gibson LG-1 that played like a dream. In 1978, when Mark was twenty-one...
...he was rushed to the hospital with severe breathing difficulty. He awoke from emergency surgery to find his breathing controlled by a noisy machine that pumped air into his lungs through a tracheotomy tube in his throat. For the next three decades, he couldn’t talk louder than a whisper and he needed the ventilator for the rest of his life. link
Actually it was much, much softer than a whisper. He had lost the use of his vocal chords entirely. He communicated by moving his lips. The sound was so soft that in order to hear it all the other sounds in the room had to be stilled — but the respirator could not be turned off. Suddenly conversation was impossible. For an articulate, widely-read man of strong opinions, this was an awful deprivation; simply saying "it's nice to see you" could take many attempts, and sustaining a dialogue was all but impossible. And it was expensive, even with Medicare. Mark’s father had health insurance...and the company attempted to drop the family because they didn’t want to pay for Mark’s care. Legal action eventually secured the health insurance, but there was a significant discrepancy in coverage nonetheless. And that's when a great act of collective good was initiated:
Meanwhile, medical bills associated with Mr. Reich's muscular dystrophy increased, particularly after he went on the ventilator, never again to breathe on his own. His parents belonged to Congregation Beth El of the Sudbury River Valley, where members of the synagogue decided in 1978 to lend a hand. link
The Congregation promised to make up the shortfall between Mark's Medicare benefits and the cost of his round-the-clock nursing and care. For his family, it was the difference between life and death, between possible and impossible. Nobody expected Mark to live. Except Mark and his family. Susan Reich writes:
When Mark left the hospital after being in intensive care for six months, he was told that he would be back within two weeks or die at home. It is a testament to his stubborn nature, and the family's loving determination, that he did not. Nurses did not know how to perform home care for a patient on a respirator 30 years ago. People did not live at home on respirators! First our parents learned his care and then we learned his care as there was no one else to do it. We knew that if Mark was “institutionalized”, he would not live. Mark’s survival was a core value in our family, therefore we were expected to do all that we could to guarantee that he lived at home for as long as he lived. That often meant caring for him ourselves.
Year after year, Mark proved the doctors wrong. He lived. He continued to run his stereo business from his basement bedroom. He voted in every election. He co-founded his town's Association of Disabled Citizens. And year after year, Temple Beth El continued to raise the money to help pay for his care. With telethons, benefit concerts and individual donations, the Temple's contributions came to anywhere from $65,000 to $85,000 each year. Individuals from the congregation took on responsibilities in his care; Beth El's rabbi came every week to play chess and chat for hours. Ernst, an extraordinarily dedicated home health aide, dedicated himself to Mark’s care after the company he worked for was unable to provide sufficient coverage. I had moved into the city by this time, and we saw one another less often. Getting out to Sudbury usually meant a day spent hitchhiking and walking; the Reich family lived in a suburban area where there wasn't a lot of traffic. Nevertheless, we kept up our friendship, meeting every few months to share music and stories. When friends from our days at Rowe Camp came to visit me, we'd go out and visit Mark and spend a day reminiscing. Mark lived. In 1985 I left the country; my career in music took me to India, where I lived off and on over the next decade. When I was back in the US I'd come out to Sudbury. I brought him a few photographs I'd taken during my travels. One, a color picture of a riverboat on the Ganges, found a place of honor on his wall.
In 1989, eleven years after Mark came home from the hospital, he moved out of his family's home and took an apartment in Mendon, a small town in Southeast Massachusetts, in order to be close to two of his long-time caregivers. Susan Reich:
Mark’s care, however, was never secure. He was constantly fighting to find nurses willing to perform the challenging tasks involved in keeping him alive and living the quality of life that he demanded. As all who knew Mark can testify, he was demanding, at times difficult. This quality hindered his care in some ways as it deterred some nurses from working with him, yet was central to his survival as he remained in control of every aspect of his daily care, insuring that he was well cared for. Throughout his life there was a weekly struggle to fill all of the nursing shifts in the schedule. Many times through the years Mom and Dad would rush to Mark’s home to fill a shift. When I was twenty, Dad asked me to take on more of Mark’s care than I had been doing, as he was in danger of losing his job to Mark’s care.
Mark's parents left Sudbury, too; all their children were grown. But Temple Beth El kept the promise its members had made; the fundraising continued. Year after year, the Temple's Mark Reich Committee helped the community members keep the promise they'd made more than a decade before, a promise made to people who were no longer living in the community, a promise to help someone who had moved an hour away, a promise made, in many cases, by congregants who had moved elsewhere themselves. Mark lived. In 1993 he moved from his apartment to a house in Millville, a small town close to the Rhode Island border. He'd had no voice for fifteen years. By this time his mobility had decreased; he could turn his head a centimeter to either side, and he could move the thumb and index finger of his right hand. It was enough to operate the page-turning machine he used to fuel his constant reading; he devoured books on history and politics. The Temple kept its promise, year after year after year.
"It's a pleasure and a privilege to help Mark," said K____ B_____, chairwoman of the Mark Reich Fund committee at the Sudbury temple... "He teaches us to not take for granted even one single breath we take. "He's someone you would want to be friends with if you met him on the street. It's just his body doesn't work." It costs about $250,000 a year, which includes payments from government programs such as Medicaid and Medicare, to keep Reich alive and living on his own. "It's very expensive to be disabled in our society," said Reich. "But one of the great things about this society is a lot is done to help people who need help. There is a desire to help people both personally and governmentally." The Sudbury committee aims to contribute $80,000 a year, thanks to generous donors at the temple and in Millville. "Somehow, miraculously, last year we achieved that goal," said B____. But Reich needs more than money, and again, people from Sudbury and Millville have been remarkable. "People from the local Catholic church are involved, providing services, shopping, painting, doing yardwork. They've been very generous with their time," said N____ B____, a Congregation Beth El member who was visiting Reich on Tuesday. "They organized Millville Day (last summer) and the proceeds went to the Mark Reich Fund at the temple. It was wonderful to see the support." "It doesn't matter what his faith is. He's part of this community," said R____ G_____, a parishioner at St. Augustine Church in Millville, who has helped look for nurses and people to do the chores. Now "a couple from St. John's (Episcopal parish in Millville) are getting involved, too." Link
Mark lived. Immobilized by the forces of disease, he had a fierce work ethic. He had always loved the outdoors; before his illness had forced him to leave college, he had hoped for a career in environmental studies. Now, with a home and a hometown of his own, he dedicated himself to preserving its wild lands and open spaces. In 1994, just a year after he had moved to Millville, he joined the town's Conservation Commission.
...though Reich is not always able to trek out for site inspections, he can check out the sites by videotapes made by other members. He has been able to bring his own gift to the commission: time and expertise on laws and conservation information. Since he is unable to work a full time job, he does much of the commission's research work, studying maps, books, laws and online resources using a personal computer that he can operate using just his right thumb — virtually the only body part he can move. ...snip... "One thing that I would like to do is more actual preservation, to have land set aside for public use or more preservation," he says. He serves as Millville's representative to the Metacomet Land Trust, an organization dedicated to preserving open space, and says he would like to play a part in establishing an open space plan for Millville. Link
...Reich spearheaded bylaws that were "very helpful in controlling contractors in our area." ... "Before, all we had was state guidelines on dealing with wetlands." The town's rules "are a lot stronger now. We now have a 50-foot no-disturb zone on wetlands. "He was not able to do site visits. We would film the visits and give them to him to review...I can't believe how hard he worked." Link
Mark lived. It was the middle of 1995. Watching television, Mark saw an interview with Christopher Reeve, who had recently suffered a profound spinal cord injury.
"I identified with his situation in a very personal way," said Reich. "About three months after his accident, I saw him interviewed by Barbara Walters and he was speaking very well, all things considered. I'd gone 17 years on a ventilator without the ability to talk above a whisper. Around the time of his accident, I'd been experimenting with different ways to get my voice back. I realized I could manipulate my trachea...but sometimes it was discouraging. Christopher Reeve made me feel inspired." Link
One day Mark saw Christopher Reeve on television describing how he had learned to vocalize with a trach tube, so Mark decided to try it, too. It was terrifying at first, because the technique actually blocked oxygen as air was forced past the vocal cords. It took months to master the process, but eventually Mark was able to speak audibly in public, have private phone conversations, and carry on real-time conversations. Link
One day in 1996, the telephone rang. I picked it up and said hello. A scratchy voice came over the wires, punctuated by electrical, mechanical and pneumatic noises. "Hi, Warren!" the voice said, "it's Mark!" He had lived in enforced silence for seventeen years. Seventeen years. His brother's daughter Anneke had grown up with an uncle who was unable to speak.
"In the earlier years of my life, he couldn't talk,"' said his 14-year-old niece. "It (was) very hard for him to talk, but he always wanted to talk." One evening he "surprised all of us with phone calls," and for the first time, she heard her Uncle Mark speak. "We couldn't believe it." Link
By 1999, Mark's work in conservation had advanced to the point that he was vice-chairman of the Conservation Commission, and the town declared him Citizen of The Year.
For Mark Reich, public service is a way of saying "thank you". "The way I look at it, there's a lot done to help people like me, and I'd like to contribute something that I can be good at or at least make my best attempt at," Reich says. Reich, who is wheelchair-bound with incurable Duchenne's muscular dystrophy, is being honored as the town's Citizen of the Year for his work as vice chairman of the Conservation Commission. "Mark is a quadriplegic, but it doesn't stop him," says Leslie M. Davis, chairman of the Board of Selectmen. "When someone with Mark's special needs can find the time to serve on a committee at a time when we have a difficulty finding anyone interested in being on town boards, I think he's just a wonderful example of what you can do if you put your mind to it and don't let things get in your way." Link
Mark's yard was a beautiful place, with flowers and shrubs blooming continually between April and October.
"One of his lifelong passions is gardening, and his yard during the warmer months is a pristinely landscaped garden of annuals, perennials, trees, shrubs and winding walkways, all designed by Reich. "Though Reich says he would rather be able to feel the soil between his own fingers, he's learned to take joy in doing what he can. 'I've learned to translate what I see in my mind's eye into what people can help me do,' Reich says. 'The people who help me with it are my hands, so to speak.' " Link
The 2000 elections were a terrible blow to Mark. He loathed the hypocritical Republicans and what they had done to Clinton and Gore, and he was absolutely certain that Bush was going to be an utter disaster. And he lived. And the temple kept its promise.
That promise, made when doctors were predicting he would soon die...represents fund-raising that over the span of Mr. Reich's life totaled hundreds of thousands of dollars. ``It became difficult at times," said Rabbi David Thomas, who became the congregation's spiritual leader five years ago. ``As the cost of nursing care and healthcare in general went up, and his government entitlements remained more or less the same, the gap became larger. There were times when we really didn't know if we were going to be able to meet his needs or not." Because the congregation decided against specifically earmarking funds for Mr. Reich in the annual budget, the commitment of support remained unwritten, but it never went unfulfilled. ``It was through the generosity of large numbers of individuals who stepped up and contributed on a voluntary basis, year after year after year," Thomas said. ``I think as Jews we really understand that we don't stand by and expect God to fix this. It's our responsibility to partner with God to alleviate suffering, to do what we can." Link
In 2002, the congregation held a "gala dinner to celebrate the sacred relationship between Temple Beth El and Mark Reich." By this time, Mark had had his voice back for six years. All of his friends were used to hearing him on the telephone. He spoke to the crowd from his wheelchair:
"Making the Impossible Possible" Thank you for being here with me tonight. It is my great fortune to be here with you. I have survived against the odds despite a devastating disease. My gray hairs and 47 years are an accomplishment that I am proud of. Most people with Duchenne muscular dystrophy have not been able to survive. Is my success a miracle? I believe that it is the sort of miracle that we together have created. Advances in medical technology laid the foundation for my success. Daunting doubts of medical professionals did not deter my parents from standing with me and pressing forward. I was able to grow up like any other kid in Sudbury. My mother struggled to transfer me from car to wheelchair to get me to and from school and activities. I went on family camping trips. My father lugged me up hillsides and through New York state winery cellar tours. My brother Matthew carried me up Nobscot Hill and along the rocky Nova Scotia coastline. As teenagers, my sisters Ruth and Susan made their friends my friends. After helping me in one way or another all of her life, Susan gave up two years of her time to help take care of me when I became ill. I had respiratory failure 24 years ago. That could have been the end of my story. The doctors and nurses at Framingham Union Hospital saved my life physically. That was only a piece of the puzzle. My family and friends were with me constantly. A cold ICU room emanated a warm glow. My father was with me most of the time for four months. His employer was a saint. My mother was there every evening after her day as a high school teacher and throughout the weekend. Members of Beth El visited me, read to me, cooked for my family, and spoke words of encouragement. Rabbi Kushner played chess with me weekly. I absorbed the energy, enthusiasm, and love for life of my visitors. That is what saved my life. In the hospital and over the last 24 years at home, the skills, hard work, and dedication of nearly 100 nurses have sustained me. Thirty of those nurses gave me years of their time and companionship. Some have stayed 6 years, 12 years, even 17 years. One couple (names omitted) made it possible for me venture out and establish my own home. My current team of care providers is hard at work getting me through an extended time of being short-staffed. We are in the midst of a serious national nursing shortage. Please join me in thanking my current team of care providers (list of names omitted).
Throughout my crisis, throughout my life, the love, care, and strength of those who touched my life helped build up my stubborn willpower. All of you make it possible for me meet my challenge, as difficult as it can be. The story of your inspiring support continues. When I lost my insurance, fellow congregants stepped in to help. Once established, we found that government entitlements left large gaps in meeting my needs. The situation seemed impossible. The congregation established formal funding to fill those needs. You made the impossible possible. Not only have I survived, not only are my most basic needs met, but I am able to lead an active life. Even though my care takes many hours a day, I am involved in town government almost daily. I have transportation to do errands, socialize, and sightsee. I have my own home, and I am able to delve into my passion for gardening. Without you, all of this would not be possible. In trying to perfect my life, I have learned that life is not perfect for anyone. That is why I believe we are all here to help each other. We can repair each other’s world as you have helped to repair my world. Every day I wake up and am amazed with the clarity with which I see things: the crisp, bright sunshine, the green earth, the deep blue sky, and the cheerful songs of the birds. In those early morning moments, I calmly, peacefully appreciate simply being alive. As my father, a man who can make the best of things, said to me after a day of taking care of me, “Thank you for inviting me to your party!” Link
In December of 2004, Mark turned fifty. There was a big party at his house, and scores of people came to celebrate. Despite the terrible disappointment of the election, Mark remained hopeful that the future of our country would be brighter. The weather was warm, and people played on his lawn, ate food, listened to music and admired the garden. Mark lived. The following year saw some setbacks in his health. His condition became more and more precarious. As he told me on the phone one day, "The doctors have never seen anyone with my condition who has lived as long as I have, and so everything that happens to me is medically unique." Especially worrisome were a series of respiratory infections that continued to weaken him. 2006 came. Mark continued to read avidly, but his conservation work had become impossible to sustain. He was too weak. He knew he was dying, but he wasn't disturbed by it; he had lived with a death sentence for forty years. We talked on the phone and it was clear that he was losing strength. A few minutes of conversation would wear him out. I visited him several times in the late spring and summer. Some of the drugs he was receiving made him drowsy, and he apologized for drifting off to sleep, sometimes in the middle of a sentence. I told my wife that day that it looked as if Mark was going to die soon.
"He didn't give up, even at the end," said S___ R_____ of Wayland, a friend of 20 years. "I always wondered what he'd be like if he hadn't had to focus so much energy on his survival." .... "In our last conversation Thursday, he knew he was dying, yet he asked me what books I was reading and he asked the nurse to write them down," R_______ said last week. "To know him was inspiring and put your own life in perspective." Link
On August 15, 2006, Mark died. I'd been planning to go out earlier that week, but one of his nurses had called and said he wasn't feeling well enough to receive visitors. He was fifty-one years old. He had lived about thirty years longer than the projected lifespan for people with Duchenne Muscular Dystrophy, and he had filled those years with work on behalf of the world, with music, poetry, gardening and community. Mark lived. ------------------------------------------------------------------------------- This could be a diary about health care. If our country's system of health insurance wasn't such an unmitigated disaster, Mark and his family wouldn't have needed the sustained fundraising efforts of their Temple. On the other hand, our country's medical resources and technology made his survival possible. . . This could be a diary about stem cell research. Stem cells have shown some promise in developing meaningful therapies for Muscular Dystrophy. President Obama's recent lifting of the ban on stem cell research is incredibly good news for people affected by muscular dystrophy and similar conditions. . . This could be a diary about Muscular Dystrophy. If you'd like to learn more, you can visit the Muscular Dystrophy Association. . . This could be a diary about a tragedy. But since nobody ever, ever, ever thought of it that way, it isn't. . . This could be a diary about a triumph. And I suppose it is, in a way. But it's not really that my friend "triumphed." He just lived; he played the hand that was dealt him, and he didn't complain. . . This could be a diary about a promise. The members of Temple Beth El in Sudbury, Massachusetts made a promise to help one of their community, and they did, even though it took longer and cost more than anyone had anticipated. My mother always used to quote Robert Service: "A promise made is a debt unpaid." Here is a vivid embodiment of those words. . . This could be a diary about a life. But I can't speak with any deep authority on Mark's life; I can only tell what I saw and what I found while writing this. I don't know what it really means, and I still cannot clearly articulate what the lessons of my friend's life are for me or for any of us. . . This could be a diary about a death. But if so, it's clearly not a diary about Mark's death in particular. I'd been thinking about writing this piece for over two years — wondering if I'd ever get around to it. And then Steven Kimball, whom we knew as JohnnyRook, died. His story made me think long and hard about the story of My Friend Who Lived, and his death made me sit down and do this writing. . . This could be a diary about Judaism. I am incredibly moved by the response of Temple Beth El, and by the words of Rabbi David Thomas: "I think as Jews we really understand that we don't stand by and expect God to fix this. It's our responsibility to partner with God to alleviate suffering, to do what we can." . . This could be a diary about atheism. Mark's parents were and are devout Jews. It was only a month or so before Mark's death that they learned I had not been raised Christian, that my father's family were Russian Jews who had converted to atheism when they reached the New World at the turn of the twentieth century. There seems to be a long and healthy tradition of "Jewish Atheism" which has a certain philosophical and aesthetic appeal. Mark's atheism was powerfully inclusive, and recognized the reality of spiritual experience. Dependent on others for help, he recognized the power of community to create miracles. . . Susan Reich disagrees with my characterization of Mark as an atheist. She writes:
Actually, I do not believe that Mark was an atheist! Atheists do not have daily conversations and rants with god. Mark did. Mark was understandably frustrated and angry at the limitations that the DMD imposed, at his lot in this life. I feel that his professed atheism was a reaction to those feelings, rather than a true atheism. Yearly, Mark lovingly created gorgeous holiday tables using glassware and linens that he kept exclusively for the Jewish holidays. He decorated his home for Chanukah, lit the menorah and had a humongous Star of David, outlined in “Christmas lights” mounted on his roof during Chanukah every year. He celebrated life as a Jew. These are not the actions of an atheist.
. . This diary could be about any and all of those things. But it's really about living. It's about gardens, and friendship. It's about a lovely Gibson LG-1 guitar that I played every day for years — until a few years ago when I was able to give it to Mark’s niece, an unexpected bequest from her beloved uncle.
It's about playing the hand you're dealt. It's about rising to the occasion. It's about working hard, and about keeping your promises. It's about some of the things that make humanity worth saving.
No man is an island entire of itself; every man is a piece of the continent, a part of the main; if a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as any manner of thy friends or of thine own were; any man's death diminishes me, because I am involved in mankind. And therefore never send to know for whom the bell tolls; it tolls for thee. John Donne
Donne says, "...any man's death diminishes me," and leaves the complementary statement to our imagination: "...any man's life augments me." Thus the story of My Friend Who Lived, a man whose long, productive and fulfilled life was made possible by hundreds of others in a huge network of family and community, and who in turn augmented their lives beyond all imagining. ------------------------------------------------------------------------------- Susan Reich wrote, after reading the original version of this piece:
I cared for Mark fairly frequently until the mid-90s, when I became too ill with Chronic Fatigue Syndrome to continue to safely do so. Mark and I decided that direct physical care was no longer plausible. I continued to send him care packages (brownies and cookies!), to research and provide natural remedies for some annoying issues, to converse via phone and to visit when I had the strength to (not nearly often enough). Matthew cared for Mark, more so in the ‘80s and towards the end of Mark’s life when his dedication to Mark became...I cannot even think of the right word...extremely strong. He would drive Mark to doctor’s appointments in Boston, spend overnights with Mark, help with piles of paperwork, just be there for Mark in every way that he possibly could. Ruth helped with Mark’s care until she moved to Vermont to fulfill her dream of having a horse farm. Toward the end of Mark’s life, Ruth visited with one her puppies which she laid on Mark’s stomach. The pup was calm and sweet, providing much needed comfort to Mark. Ruth and I were teens when we started caring for Mark, technical respiratory and physical care that nurses were unwilling to do! Yes, Mark’s survival is so much the story of overwhelming parental, family (and spouses and partner’s) commitment and caring. Mark’s story is also the story of the miracle, the power, the blessing and gift of community and personal support in keeping the life spark strong through unimaginable challenges and against huge odds. The support that Mark had from the Beth El community, from individuals from Beth EL, from the Millville community and local religious communities, from his friends, his nurses, his physicians, our family and extended family, were central to the energy and strength that kept Mark alive for decades past his life expectancy. It was amazing and cannot be stressed enough. The gratitude that our family feels to all these people is impossible to put into words. Such courage and strength of spirit Mark had! It is impossible for those who did not know Mark personally to comprehend the intensity of the daily minute-to-minute care that was necessary to keep him breathing and alive. That he determined that he would live and thrive and contribute in the face of it (year after year) is indicative of intense determination, faith and strength of character. While he was alive, he was just my brother Mark. In retrospect, the fullness of his life, the support given to him, and the power of his brave being and personality to LIVE is mind blowing. I could write so much more...the memories...about braiding Mark’s long hair before he went to school some mornings; the wonderful parties that we would have when Mom and Dad went away on vacation (they trusted and respected us!); about hanging out with you and Mark, taking long walk and rolls while you corrupted and educated me; the jazz — no other 14 year old girl that I knew listened to Don Cherry and Dollar Brand and McCoy Tyner while doing her homework (thank you Warren and Mark!); hearing Mark’s voice on the message machine after 17 years of silence — I nearly fainted. But I will cease.
------------------------------------------------------------------------------- Thank you for having read this far. You can take a little virtual tour of Mark's gardens here. You can contribute to Rowe Camp's Mark Reich Accessibility Fund here (go to the bottom of the page). If you are moved by this story, I ask you, as I ask all my friends, to make a donation to www.350.org. And because Mark would have loved to know Steven Kimball, our own JohnnyRook, you can honor them both here. I would like everyone to give a warm welcome to a new member of the dKos community. Mark’s sister Susan Reich is now loveheals, user id 208,199. She will be contributing to the discussion thread on this diary; tip her generously. I would also like everyone to give a warm welcome to visitors from Sudbury’s Temple Beth El. A link to this story has been posted at the temple’s website. I will close with a reprise of Mark's words from 2002:
Without you, all of this would not be possible. In trying to perfect my life, I have learned that life is not perfect for anyone. That is why I believe we are all here to help each other. We can repair each other’s world as you have helped to repair my world. Every day I wake up and am amazed with the clarity with which I see things: the crisp, bright sunshine, the green earth, the deep blue sky, and the cheerful songs of the birds. In those early morning moments, I calmly, peacefully appreciate simply being alive. As my father, a man who can make the best of things, said to me after a day of taking care of me, “Thank you for inviting me to your party!”
Thank you for inviting me to your party.