A Song in the Night

by Bob Massie

  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 f
lown 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 Adam
s 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.