A Song in the Night (33 page)

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.