The night before the launch of the Global Reporting Initiative I stayed in a small hotel a few blocks from UN headquarters. The Ceres team ran to the building early the next day to make preparations, and I had the chance to walk over alone, enjoying the sunshine and light breeze of an April morning. Even though the distance was only a few blocks, the trip was not easy. My left knee replacement had worked well, but now, nearly four years later, my right knee had degenerated into a painful joint. Bone scraped on bone, causing me to wince with every step. It was obvious that the right knee was also going to have to be operated on. I had traveled around the world with constant pain, waiting until we had completed the task of setting up the GRI, but now the surgery loomed, in less than six weeks.
I was also tired—more tired than I should have been. It had been demanding to run two organizations at once—to serve as the chief executive of Ceres and the chair of the GRI steering committee at the same time. It meant that in addition to making all the daily decisions, I was leading a board meeting in some capacity every six weeks, usually in different cities. I was fortunate that Allen White had taken over the interim CEO position for GRI and moved to Amsterdam to make sure that events ran smoothly there, but I was still responsible for much of the large-scale design and diplomacy of the new institution. Over time the cumulative effect of the travel and the responsibility had started to wear me down, but I sensed that something potentially more serious was wrong with me. When the ceremony at the United Nations ended, I was once again exhausted, and I knew that it was time for another round of tests.
Often, even though life can be terribly painful, one is blessed with a moment of mercy. Eight years before, I had been struggling with the shock of having lost my marriage, but soon afterward something unexpected and totally wonderful happened: I reconnected with a woman whom I had known very slightly in college. Anne Tate was a brilliant, beautiful, redheaded architect. We had many friends in common, and she had supported me during the campaign. When it became clear that Dana was never going to change her mind, Anne and I started to spend more time together. Within months I had fallen deeply in love with her, and after a year of courting, she agreed to marry me. We were engaged in 1995 and married in June 1996, and she has been the source of most of my happiness ever since.
Since the issue of HIV had been so destructive in my first marriage, I decided to present myself to doctors in the Boston area to ask them if they had any idea why I was still healthy. By testing frozen samples of my blood that they maintained for routine federal studies, they established conclusively that I had been infected in 1978. I realized with a shock that the mysterious illness that had forced me to withdraw from Yale Divinity School had, in fact, been the acute symptoms of initial HIV infection. Now, seventeen years later, I seemed to be brazenly defying the odds. Eventually I met Dr. Bruce Walker, an infectious disease scientist at Massachusetts General Hospital. “I had my doubts at first about whether he was really infected,” he explained to a reporter several years later, “but we confirmed that very quickly and discovered that his viral load was below the limits of detection. That went against what we thought HIV did. It made us extremely interested in learning how he was able to succeed in combating this while others were clearly failing.”
In most HIV patients, he explained, cells that fight infection—“the infantry,” as he referred to them—are present, but they are missing the “general” cells that tell the infantry what to do. The lack of a coordinated defense opens up the human body to attack by the HIV virus, which can then overwhelm the immune system. When the doctors tested my blood, they expected to find a depleted system of generals. Instead they found enormous numbers of them. They had never seen anything like this, and according to Dr. Walker, it “fundamentally changed how the entire field looked at HIV.” “For me it was the first indication that the immune system might actually be able to get the upper hand against HIV,” Walker told the reporter. “He’s really the person who allowed for that discovery to happen.”
Soon Walker was drawing my blood on a regular basis; sometimes he even stopped by our house himself early in the morning to draw it while we drank coffee and talked about the emerging science. Eventually his laboratory shipped samples of my blood all over the world under the research code name 161J. Walker and his colleague Dr. Eric Rosenberg became my very close friends, and they both joked that I could not leave the Boston area without jeopardizing their supply of blood from what they increasingly referred to as “their gold standard.”
Ever since then Bruce Walker and his army of grad students have been exploring every aspect of my biochemistry and genetics. Once I was introduced to a large group of Bruce’s students at a party at his house. They didn’t recognize my name, but when they learned that I was 161J, they flocked around me as if I were a minor rock star. As more and more years passed after my infection—twenty years, twenty-five years, thirty years—it became clear that I was one of the extremely rare people (fewer than one in five hundred) who have a natural genetic resistance to HIV. My unusual situation has prompted several national documentaries, including a prizewinning film for the science program Nova in 1998. The information gathered by Dr. Walker, Dr. Rosenberg, and many others over the years gradually gave Anne and me the confidence to try to have a child. On June 18, 1998, our daughter, Katherine Suzanne Tate Massie, was born—a healthy and beautiful girl who has the outgoing temperament of her father and the quick intelligence and fiery hair of her mother. After all the anxiety that my infection generated in my first wife, my family, and my friends, it turned out in the end that even though I had been infected for more than thirty years, I had remained immune to HIV.
The story is still unfolding. Just recently Dr. Walker and an extended national team of researchers decoded the precise genetic sequences of a sample of people like me, and discovered that our resistance came from a specific sequence of amino acids, further opening the door to understanding and treatment. The exact mechanism through which this genetic variation prevents HIV infection, however, remains unknown.
By the time of the Global Reporting Initiative event at the United Nations, Kate was three years old and I was traveling extensively to promote the new organization in countries all over the world. The rising knee pain and general fatigue did not bode well. Dr. Walker and then eventually Dr. Raymond Chung at Mass General studied this more carefully and learned that though I had a strong resistance to HIV, another virus, hepatitis C, was causing serious damage. Hepatitis is a slow-moving infection which I had also received through my injections of blood products—yet another illness that could have been avoided if the pharmaceutical companies had heat-treated their products back in the 1970s. Hepatitis attacks the liver over years, even decades. As the liver becomes inflamed, the disturbed cells start making scar tissue, and the organ becomes increasingly gummed up and dysfunctional. The process is irreversible. As this condition, known as cirrhosis, advances, the liver loses its ability to cleanse the blood and create new, critical proteins. Slowly but steadily a person with cirrhosis loses the energy to function.
I had the knee replacement surgery in June, but I had terrible trouble recovering from it. I had planned to travel back to South Africa in August to speak at the World Summit on Sustainable Development, but as I approached the date of departure, I knew that I was in trouble. With deep regret—and not a little foreboding—I canceled that critical trip and took myself into Mass General yet again.
I told Dr. Chung that I was sinking into fatigue. I could not recover from airplane trips. I was beginning to lose focus in the middle of the day. Ray decided to do a full battery of tests. He promised to call me as soon as he had the results.
I was walking across the Boston Common on a beautiful early evening in the fall of 2002. The fading sunlight illuminated the red and amber leaves in the park and made the golden roof of the State House glow. The sight made me realize once again why I love Massachusetts. Then the phone in my pocket buzzed.
“Bob, this is Ray,” the doctor said. “Your tests are back. Things don’t look good. You are developing advanced cirrhosis, and we recommend that you begin a course of treatment immediately. I need you to come in tomorrow.”
I hung up. The evening light had suddenly darkened.
When I went in, Dr. Chung explained that the treatment, which consisted of weekly injections of interferon, would be difficult. It would take four months to see if the treatment was working, and then I would have to continue for a year if it showed promise. The statistics indicated that for my genotype the likelihood of success was small. But we needed to try.
And what would this mean for my work? I asked.
“You may be able to continue, but at a much slower pace,” he said. “People react differently. You could be seriously incapacitated.”
Within a few months I could barely function. The combination of the cirrhosis and the interferon felt like pianos dropping on me from the sky. In January 2003, I called together the board and staff of Ceres. Since my condition would inevitably deteriorate, the longer I waited, the more I risked the future of Ceres. With a sense of great emptiness and loss, I resigned.
I immediately went home to a largely silent house. A few weeks before I had been traveling the world, guiding and managing two large staffs, giving speeches, orchestrating change, and then everything stopped. Except for seeing a small circle formed by my wife and children and a few friends and caregivers, I had to withdraw into long days of isolation, much as I had for many years as a child in braces and in my wheelchair. I felt as though I had been fired—by life. The possible solution was a liver transplant, but that lay far in the future. No one knew how long the wait would be, or whether the surgery would ever happen at all. If I developed a serious infection or liver cancer, or if the doctors never found an appropriate match, I would die in the next few years.
For the first months I was lost in grief. Hemophilia had been painful and dangerous. HIV had seemed fatal. I had beaten both of those. Now I was facing a new, equally challenging foe, one that I had no guarantee of defeating. I had no sense of the timing, because I was not yet sick enough to qualify for a transplant. When I told my friend and pastor, Michael Povey, that I would have to get much worse before I would rise on the list and qualify for a transplant, he said with compassion (and a touch of humor), “My gosh, Bob, then what do we pray for?”
More than once during those first days I thought of all the biblical characters who had to endure long periods of physical or emotional trial—Job, sitting in ashes; Jonah, lying in the belly of the whale; Moses, wandering for decades toward the Holy Land; and Jesus, stranded in the desert. There is no glamour to waiting; all the excitement of modern life is built around being busy, which is equated with being important. For years I had had responsibilities, opportunities, friends, challenges—and now everything except my wonderful family had been wiped away. I was sitting at home with little to do. I felt as though I had a severe flu—all day long, every day, month after month. I often recalled the words of Paul, who cried out in his letter to the Romans, “Wretched man that I am! Who can deliver me from this body of death?”
For the first year I tried to stay busy and to bring new ideas into being. In the months before I stepped down, I had flown to San Francisco to perform the wedding of Kelsey Wirth, the daughter of Tim and Wren Wirth, all dear friends. On the morning after the ceremony I had collared Tim in the lobby of the Fairmont Hotel and asked him to sit with me for an hour while I explained my latest idea to him. I had realized that Congress was unlikely to take the issue of climate change seriously for years to come, and I had imagined different ways in which to increase the power of investors on this question. Now that the Global Reporting Initiative had been established, I wanted to shift the entire focus of Ceres to the impact of sustainability—and particularly climate change—on the long-term financial value of major pension funds. I proposed to Tim that he help me create an “institutional investor summit on climate risk” (a new term) at the United Nations. The idea seemed simple. We would form a group of prominent “conveners” who would invite state treasurers and other pension trustees—who control hundreds of billions of dollars—to the United Nations for a briefing on the long-term effect of climate change on their portfolios. Tim and I, having been in politics, knew that under the right circumstances, state treasurers might jump at the chance to go to New York and think about their special duties as elected representatives responsible for the future of their investment funds and the future of the planet. The venue—one of the major chambers at the UN—would encourage them to take the broad, international, long-term view. The UN, I hoped, would be pleased to have representatives with so much money concentrating attention on one of their signature issues. And then, having gathered the trustees to the UN, we would invite the actual asset managers—the people who controlled the investments on behalf of the treasurers and pension funds—to come listen to something that they were reluctant to consider.
Tim agreed to begin implementing this idea immediately. It took almost a year, and it was not easy. The UN turned out to be skeptical about inviting these “local officials”—it was used to dealing with heads of state. The treasurers were cautious about being associated with the UN, which was under attack by the administration of George W. Bush for being a dangerous, anti-American institution. And the asset managers, who generally believe that if a topic is important, they already know everything there is to know about it, were reluctant at first to come to the UN.
We persisted, however, and eventually sent out an invitation with five pages of signatures from the heads of major organizations asking people to come. Though I was no longer the head of Ceres, my successor, Mindy Lubber, asked me to write some of the speeches for the people who appeared, including Leon Panetta, the former White House chief of staff, who would make the case that the problems were urgent. “The question that every manager or trustee needs to ask is simple,” I wrote into Panetta’s remarks. “Under what circumstances and to what degree would our portfolio be affected by climate change?” To underscore the point, he repeated it.
The event was a huge success, attracting hundreds of the top financial managers to the United Nations and creating a large new force on Wall Street to consider the effect of climate change. Ceres transformed this initial gathering into a powerful organizing tool known as the “Investor Network on Climate Risk,” which eventually brought together one hundred members with more than $10 trillion in assets to consider the question and to invest money in clean energy. There have now been four more investor summits. A few months after I stepped down, the Skoll Foundation presented Ceres with the prestigious national Skoll Award for Social Entrepreneurship, which Mindy Lubber accepted on the organization’s behalf.
At home I struggled to keep going with projects that engaged the outside world. Over the next few years I tried my hand at putting together an Internet company with the modest goal of providing education for everyone everywhere in the world for free. I went so far as to draft a business plan and make presentations to a few prominent venture capital firms in Boston, but my fading energy remained an understandable concern for all of them. Anne and I worked intermittently on various political campaigns, holding one of the earliest major house parties in our region for a candidate for governor, Deval Patrick, who became a friend and went on to win the race. Patrick fully justified our early enthusiasm, except on the issue of gambling, when he entertained a proposal to open up casinos and slot barns all over the state. I examined the matter closely and realized that even though the governor, the senate president, the speaker of the house, and all the major unions (including the teachers’ union, which shocked me) were supporting this idea, it would be catastrophic for the poorer people in the state. Working with a wonderful team of allies from across the commonwealth, we attacked slot machines as particularly dangerous because they are designed to create neurological addiction. The best I could do, however, was to attend a few meetings and, on two occasions when I felt physically horrible, drag myself up to the State House to testify against the proposals. We were able to hold the line for several years—and even to adjust the governor’s thinking a bit—but the tens of millions of dollars of special-interest casino money, combined with the dazzled but wrongheaded thinking on the part of revenue-desperate legislators and building-trade unions hammered by unemployment, have since carried the day.
I also worked on energy efficiency, bringing together many different parties to promote the adoption of insulation and better technologies for the one million leaky oil-heated homes in Massachusetts where families are struggling to make ends meet. As I had in other settings, I discovered that many people with common interests—from the people who worked with inner-city youth on building rehabilitation, to the low-income fuel assistance advocates, to the clean technology entrepreneurs, to social justice activists, to the energy auditing and retrofit companies, and many others—didn’t know each other. When I brought them together, they found common cause and presented a string of proposals to the governor and the legislature. At one point I wrote a piece for the Globe in which I argued how the simple act of improving the fuel efficiency of a home would have five positive effects: 1) increasing disposable income by lowering costs; 2) improving housing values; 3) creating local jobs; 4) advancing the adoption of new technology; and 5) benefiting the low-carbon economy as part of the battle against climate change. The Globe ran the story and the new coalition made serious strides, including being part of the effort to persuade the Obama administration to adopt what became known as the “Cash for Caulkers” program. But quickly I had to slip away.
Such engagements were sporadic, demanding, and brief. Mostly I sat at home, trying to balance my intense desire to be engaged with the world with my declining energy. The symptoms of liver disease slowly affected not only my body but also my thinking. The physical fatigue was causing me to sleep twelve, fourteen, even sixteen hours a day. When I was awake, my brain often seemed in a fog. As I explained to one person who came by to write a story for Princeton, “You go through a period where everything slows down. You’re still completely awake, but you can’t think about things as quickly.” I sometimes couldn’t think if two people were talking in the room at the same time. I regularly closed my eyes in order to focus on the next words I wanted to say. Concerned that my reaction time was slipping, I completely stopped driving, which meant that I had to rely on Anne, on friends, and on taxis to keep any appointments or leave the house.
With thousands of hours ahead of me and nothing to do, the Internet became my window to the world, and I traveled across it with endless fascination. I set goals for myself. I watched dozens of movies, putting myself through my own version of film school. I learned to make pie crust and turned the sour cherries that grew on the corner of Sycamore and Browning streets into memorable desserts. I also decided to read a biography of every president of the United States. I learned just how often the United States has been in crisis, and how vociferously political opponents have been attacking each other since the beginning of the Republic. I learned hundreds of interesting details—for instance, that George Washington disliked Thomas Jefferson, that Jefferson opposed the creation of an American navy, and that Jefferson and Adams battled bitterly over our relationship with France and England, eventually reconciling twenty-five years after the Declaration of Independence. I learned about the furious arguments over the Mexican-American War, including a passionate speech in opposition by Abraham Lincoln during his sole term as a congressman, and how many of its veterans later became president. I felt unexpected sympathy for the more obscure presidents, including Franklin Pierce, who lost all three of his children before he became president and whose eleven-year-old son died in front of him in a train accident only weeks before his inauguration, an event he tried to drown in alcohol during most of his presidency. (He eventually died of cirrhosis.)
I learned how the politics of the United States never stopped evolving, so that leaders like Martin van Buren, who was a northern Democrat, and John Tyler, who was a southern Whig, eventually found themselves without followers and without parties. Tyler was an especially peculiar president, a man who fathered fifteen children in two sets, starting in 1815 and stretching until 1860. Tyler refused to talk about the “nation” of the United States, because the only nation to which he felt loyalty was Virginia.
I learned how political parties gradually shifted views. I found the Republican Party under Lincoln attractive for its antislavery views and was even more compelled by the Radical Republicans, who fought for the rights of African-Americans during the presidency of Andrew Johnson. I learned with dismay about the rampant racism of the southern Democratic Party, sentiments that endured into the years of my childhood. I noticed how our greatest presidents had certain skills in common. They often combined a clear vision with a canny sense of how to seize unexpected events to advance their purpose in the face of strong opposition.
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 like 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.