A Song in the Night

by Bob Massie

  As my liver slowly collapsed, I slept more and more—sometimes as much as twenty hours a day. Much of the daily burden fell on Anne, who kept working as a professor at the Rhode Island School of Design, took me to medical appointments, cooked meals, and raised Katie. A circle of friends from all parts of our lives, including members of our families and the community of St. James’s Episcopal Church in Cambridge, stepped in to support us. As I became disturbingly gaunt and my skin took on an unpleasant grey and yellow hue, they overcame their worry and embraced me. They brought casseroles and treats, drove me wherever I needed to go, and helped to sustain the household. Others banded together to set up an emergency fund for our rising and potentially catastrophic medical expenses. To make sure that I was properly fed, did not have any accidents, and withstood the long empty hours, some individuals committed to staying in our home while Anne was at work and Katie was at school. During birthdays and holidays the members of my family labored mightily to create a festive setting while I dozed on the couch. Looking back, much of this time has faded for me into the haze of partial memory, but for Anne and for our friends it was an intense marathon of care that lasted for years.

  Because my condition was deteriorating slowly, there came a point when the only medical option that might rescue me would be to pursue a “living donor” transplant. In this procedure a donor contributes a portion of his or her own liver, which would have been transferred into me. This is feasible because the liver has the extraordinary ability to regenerate, so the separated segments would have grown back to full size in a few months. Because this was major surgery, we doubted that anyone would even consider it; yet when our physicians held the first informational meeting at the hospital, more than a dozen astonishingly generous people came to explore the idea. When the need for a living donor was shared through the Princeton network and on our own Web page, more potential volunteers from around the country stepped forward. Several people went through preliminary testing. One dear friend even received initial approval until, just six weeks before the scheduled surgery, the surgeons abruptly ruled him out because of differences in the anatomy of our veins.

  The snow and the flowers and the heat of summer all came and left and came back and left again, year after year after year. My children grew. My friends took new and interesting jobs. As the weeks became months and the months became years, Anne stood as a heroine of stability and compassion. When I lost heart, she encouraged me. My only job, she told me as we talked at night, was to keep going. I could measure the passage of months by watching the top branches of the sycamore tree outside my bedroom window grow; over the years, I saw the leaves reach, surpass, and then conceal the phone wires across the street.

  I had no idea where or when it would end. I longed to be back out in the world, meeting people, creating change. At first I was like a racehorse locked in a barn, staring wistfully at the huge fields in the distance. Eventually I dwindled into a weakened creature who was almost constantly asleep.

  My medical condition was not promising. My model for end-stage liver disease (MELD) score stayed stubbornly in the middle range, meaning that I was not moving higher on the transplant list. Eventually my Mass General team encouraged me to be cross-listed at another transplant center, and we explored several, including Emory University in Atlanta. It took hundreds of hours to manage all the medical, practical, and insurance details of my care, leading us to wonder how people with fewer resources or a smaller network could possibly cope.

  Starting in 2007 I slipped more and began to receive calls for transplants, as either the primary or the backup recipient. Eleven times the phone rang. Each time my family prepared a bag, I stopped eating and drinking for twelve hours, and we nervously held on to our cell phones. Once, on a beautiful spring morning that was also opening day for the Red Sox at Fenway Park, I was told that a jet was warming up on a runway in Cleveland, ready to fetch me. The mayor of Somerville, Joe Curtatone, graciously arranged for me to be taken to the airport in a police car if that proved necessary to get through the baseball traffic. Anne rushed home from RISD, desperately calling people on her cell phone, while Katie, who was only nine, packed her mother’s clothes. Then the doctors told the pilots to stand down; it was a false alarm. Twice I made it into Mass General and was prepped for surgery, only to have the surgeons reject the donor organ and send me home.

  Over six and a half years Anne and I visited four transplant centers, in Boston, Cleveland, Atlanta, and Pittsburgh, and I was listed in the first three. Each center had its own protocols and tests. We sat forever in windowless beige rooms with old magazines and forlorn fish tanks, waiting for me to be scanned, poked, and prodded in endless tests, consulting legions of physicians, filling out the same medical histories over and over again, and picking through dreary cafeteria food between appointments. As the months dragged by, I felt trapped in the same medical cage that had dominated my childhood. Everyone was pleasant and professional, but I was losing hope.

  Finally, in June 2009, I was sitting in my home when the Emory transplant team in Atlanta called with an extraordinary proposal. They had just learned about a twenty-four-year-old patient from Florida who had been living for many years with Maple Syrup Urine Disease, a condition in which she lacked a critical enzyme that processed protein. She had been on a tightly restricted diet since birth. Now, as an adult, she was being exposed to greater and greater risk of brain damage and death. If she received a new liver, her enzyme levels would be boosted enough to process protein and save her life.

  The surgeons at Emory realized that when they removed her liver, they would have a young organ that was healthy except for the enzyme problem. If her liver was placed in someone else, through a so-called “domino transplant,” the recipient would experience a very slight drop in the enzyme level, but not enough to replicate the young woman’s condition. In their view, I was the right match. Anne and I talked to many doctors about whether the solution made medical sense, and they all said yes. When we agreed to the procedure, the team at Emory asked us to come to Atlanta soon.

  Our whole family swung into gear to support us. We first drove Katie, now eleven, to Maine so that she could stay for an extended period with our families; we knew that it might be weeks or months before we saw her again. As soon as we arrived, we received a second call from Atlanta: please come now. We threw everything back into the car, kissed Katie goodbye, and drove late into the night to reach Boston. Early the next morning we flew south.

  When we arrived, we moved into a special residential facility for transplant patients and their families. We met people waiting for hearts and lungs and livers, and people recovering from their surgeries. We had been there for a week when the transplant coordinator called after midnight. Please come in at 2:30 in the morning, she said. Anne and I shook ourselves awake, and then, with nothing to do, we decided that I needed a haircut. We sat in the kitchen under the fluorescent lights, surrounded by newspapers on the floor, while Anne trimmed my unruly hair. Then, in the pitch dark, we drove through the silent streets to the hospital.

  The full preparation took nearly twenty-four hours. Anne’s sister and her husband drove in from another city to keep us company. Anne also took her computer and issued bulletins on Facebook. Hundreds of people followed our situation and sent good wishes, which she immediately passed along to me. Eventually the chief surgeon, Dr. Stuart Knechtle, brought in the surgeons who would be operating in two teams in side-by-side operating rooms. They stood around my bed in their white coats, lit from above, all of them grinning. To me they looked like angels. When I was introduced to the surgeon who was actually going to be operating on me, Dr. Winston Hewitt, I saw instantly that he was a Jedi knight. He exuded such calm and competence that something within me completely and permanently relaxed.

  Late the next night Anne and I were finally called down into the presurgical area. I lay on my back in a room with a dozen empty beds, in my surgical gown, with all my IVs running and Anne at my side. I felt li
ke an astronaut before a launch. My mind skidded through a hundred thoughts and feelings. When I broke free from the atmosphere of my current life, what would I find? Where would I go? Would I ever see this woman sitting beside me again?

  Anne pulled out an iPod and we each put in one of the earphones. A few months before, one of our friends had recorded singing in our church, and we now turned to these ancient songs, sung by many of our closest friends, to comfort us. One of the most beautiful is a South African call-and-response setting of the Nicene Creed called “Nasadiki,” which means “I believe.” The song, led by our dear friend Tom Hirschi, filled our ears with harmony and peace as we waited in a freezing, empty, high-tech waiting area, buried somewhere in a building in Georgia, surrounded by the blues and whites of medical equipment and the quiet and dark of the early morning hours.

  The song in the night reached into the deepest part of my soul and reassured me that in the end, I had nothing to worry about. Tom’s soaring voice reminded me that out past those walls, there was always going to be a beautiful world, and that out past that world, there was always going to be a glorious universe, and that out past that universe, there was an overwhelming love at the root of everything that would catch me if I fell.

  Then members of the operating team came to get me, and with great tenderness Anne kissed me and said goodbye. They took me into an ice-cold, brilliantly lit room, where I was surrounded by bustling people in caps and masks. They moved me onto the operating table, gently positioned my arms and legs, and spoke to me quietly. And then, as it says in the Gospel of Luke, I launched out into the deep, delivering myself wholeheartedly into the hands of others and into an unthinking darkness from which I had no idea if I would ever return.

  For a long time everything was blackness, emptiness, until slowly it wasn’t, and I began to hear voices and feel people moving my body and painlessly removing the tubes that had kept me alive. I recovered consciousness and found myself in intensive care, with Anne, looking tired but relieved, standing beside me. The nurses bustled around and offered quiet encouragement. The doctors came in and spoke to me, and their voices seemed to come from a long way off.

  As the hours and days passed, I returned to this life. My recovery during the first weeks was hard—the medical staff watched every heartbeat, every breath, and every change in my body chemistry with vigilance. I experienced strange and difficult symptoms—flashes of intense cold, sudden exhaustion and sweating, accumulation of fluid in my abdomen—but they addressed each one. The nurses, who came from around the world but all spoke in southern accents, took care of me with skill, affection, and good humor. My sister Susanna traveled from her home in Kentucky to make sure I was okay.

  After a week of recuperation, Dr. Knechtle approached me with an interesting request: Did I want to meet my liver donor? Anne had already guessed that the donor was somewhere on the same floor, and she even had an idea of who it might be, but this was a direct invitation to meet. I said that I would be delighted to do so, if she was also willing. The word came back that she was. At the appointed moment we gathered—the two families, several doctors, a few nurses and social workers.

  Dr. Knechtle suggested that we start by talking about our lives before transplantation and what it meant to us that we had gone through the procedure. I learned that my donor, a charming young woman named Jean Handler, had lived with her illness and its frightening implications from the moment of her birth. She had been forced to eat a rigorous and highly tedious diet; she had never tasted anything with a significant amount of protein until the days after the surgery. I talked to her about what it was like to grow up with hemophilia. I mentioned the joint bleedings, the pain, and the long stretches of isolation and missed school. At different moments during our presentations, everyone in the room choked up and we had to pause for a second before we could go on.

  We chatted more and more comfortably about the details of life in the aftermath of transplant. We both knew that we had a long recuperation in front of us. Jean told me about tasting ice cream and meat and other previously forbidden foods for the first time. We agreed that the nursing staff was the best we had ever known. Eventually we started to tire, so we decided to meet again in a few days.

  As we got ready to depart, I leaned forward and concentrated my attention on Jean.

  “Jean, I just want to express my gratitude as deeply as I can. This was an extraordinary act of generosity on your part. It is going to change my life completely.”

  She let out a light and breezy laugh.

  “Oh, Bob, of course!” she said with a huge smile. “Any time!”

  In those first weeks and months of recuperation, the doctors focused on the critical issue of whether my body would accept the foreign tissue of Jean’s liver. They measured and adjusted my anti-rejection drugs daily. They also wanted to be sure that by suppressing part of my immune system they did not cause the HIV and hepatitis viruses to get out of control, so they put me on medications to control those. For eight weeks I continued living at the transplant house, struggling with the many complicated symptoms that emerge in the first few months of a new organ. Again Anne took care of me as I mastered the new medications and overcame each challenge. Katie came for a visit, and it was a thrill to see her, though she struggled with her disappointment that I was not “all better yet.” Soon it was time for us to go home and begin our new life.

  When we finally packed up and left for the airport, I experienced a moment of disorientation. All our bags were ready, but I could not find the “shot bag” in which I carried the material for my hemophilia. I instinctively looked for it. Then I was reminded of the truth: Jean’s liver, residing in me, was now successfully churning out Factor VIII at normal levels. I did not need the shot bag—and I never would again, for the rest of my life.

  I sat down on the bed and put my head in my hands, overwhelmed with emotion. Sitting there in that little room, I realized that the deepest and most secret desire of my childhood, the dream of the crippled Superman, the desperate cry of the boy suffering through the brutal joint bleedings that kept me from walking and from sleep, had finally been heard. In addition to my salvation from HIV and from hepatitis C, I had experienced a miracle that stretched all the way back to my first flickering thoughts in this world. For there in Atlanta, my hemophilia, the one thing that I had thought would define my life from birth to death, had been utterly, totally, and permanently cured.

  EPILOGUE

  Time AND Space

  The future is an infinite succession of presents, and to live now as we think human beings should live, in defiance of all that is bad around us, is itself a marvelous victory.

  —HOWARD ZINN

  I am once again sitting in Maine in the small log cabin to which I have been returning for more than fifty years. The sun is rising through the fir trees and warming the tall grass. A breeze is blowing straight up from the cove, carrying the rich aroma of ocean and sand, seaweed and clay, all brushed clean by the forest. Bees are making their rounds of the black-eyed Susans and blue cornflowers planted just in front of my window, while an emerald-backed hummingbird flutters from blossom to blossom. It is now more than two years since my transplant and my startling return to activity.

  As I sit, I wonder, what does one do with a second chance in life?

  Under any normal circumstance, I should not be here. When I was born, hemophilia was considered a potentially fatal illness; my life expectancy was less than thirty years. When I contracted HIV, the usual amount of time between diagnosis, progression to AIDS, and death was as little as two years and no more than five. And each year thousands of people in the United States—and millions around the world—die of liver disease from hepatitis C.

  Yet here I am, sitting quietly and at peace, my hemophilia resolved, my HIV tamed by my immune system and medication, and my hepatitis rolled back through the advent of a new liver. In my fifties, I am still alive—and I am now at liberty to die of old age.

  Sidelined
and silenced for long periods of time, I am now healed and feeling new force. I am no longer a racehorse trapped in a barn; the doors have been unlocked, the gates have been thrown open, and I can see the rolling fields of the future sparkling in the sun and stretching to the horizon. I now want to go out into the world and to speak and to act, not for myself but for everyone who is struggling and hoping for a better life. I see a great deal of what is wrong with our economy and our world, and I want to join those who are seeking to renew democracy and to transform our economy into one that is newly prosperous and sustainable.

  In short, I have a simple yet immense desire. I want everyone to thrive. Each person and each family deserves the right to enjoy the relatively brief time we have been allotted on this planet. To do so, they need access to the basic foundations of a life of dignity and prosperity. In America many of our old solutions and institutions have failed, and it is time for us to take bold steps to create new ones.

  I want to work so that every family has the basics of life: a good home, a good school, a good doctor, and a good job. These four walls together form a foundation of freedom and prosperity. When we look around the country, we see too many people struggling to obtain these basics. There are many reasons for such struggles, from personal problems to market failures to structural injustice. But a life, a community, and a nation that provides these things is not some magical fantasy. It was the purpose of the founders and has been the goal of every subsequent generation. The question that burns within me now is whether this is still our goal today. Or have we, for the first time in American history, lost confidence in our dreams?