A Song in the Night (2 page)

In the fall of 1962, when I was six, my biggest choice was who to be at Halloween. I had spent hours watching Roy Rogers, the most famous cowboy on television, dashing around on his horse, Trigger, shooting the guns out of the hands of villains (but never injuring them). I also was captivated by the space program. In the end I decided that the best choice would be the hero who stood for “Truth, Justice, and the American Way”: Superman.

This meant that I would need a store-bought costume. My mother didn’t like such things, but she complied and brought one home. I thought it looked glorious: a shirt and leggings in blue, shorts and flowing cape in red, and a shiny yellow belt. I was so taken with it—especially the huge “S” emblazoned across my chest—that my mother felt it necessary to read, and reread, the printed warning that the costume
did
not and
could
not under
any
circumstances confer special powers such as flying.

I didn’t have any illusions about that; I just wanted to walk around in it and collect candy and admiration. By that time I had been in a full-length leg brace for a year, moving stiffly across the floor; soon both legs would be locked. Most children reacted with fear when they met me, and I had to wrestle with the sting of their rejection. This Halloween, however, I decided I would not care. They would not see a boy in a brace but the Man of Steel.

The night before, however, my left knee swelled suddenly and violently, so I was trapped in terrible pain on the couch in our living room. On Halloween, I stubbornly put the costume on anyway. Maybe it would bestow a few powers to carry me through the evening.

My father, reading the dejection on my face, offered to push me in my wheelchair from house to house, or even carry me. I declined. Superman in a wheelchair just didn’t make sense. I stayed on the couch, trying to appear nonchalant. Local children came to the door, and my mother brought a few of them in so that they could admire my costume. They were so clearly shocked and embarrassed that I quickly forbade her to admit anyone else.

The only remaining admirer was my uncle Kim, who came for dinner. My parents intercepted him in the front yard, and when he walked in he made a huge display of how impressed he was to meet Superman in person. He asked me about my adventures and wanted to know why I had chosen to pay a visit to, of all people, his useless brother.

When I removed the costume later that evening, I shouted as I tried to slide it past my hot and throbbing knee. That night, unable to sleep because of my suffering, I sat by myself in my bedroom, staring out the dark window above my bed. The whole evening had been a disaster. There was no way to relive it or to retrieve it. It was gone forever. It took a long time for my breathing and my heartache to settle.

Slowly the days passed, and new happiness approached. With the arrival of Thanksgiving and Christmas, I gradually put the Halloween incident behind me. Tomorrow, I told
myself, would be different. There were still things to look forward to. And I knew, somehow, that the future would contain many surprises. I carefully protected my unspoken dreams, each too fragile to be mentioned. Some of them seemed so unlikely that I did not want to be ridiculed for entertaining them. And the deepest hope, held like a jewel in my heart of hearts, was that maybe,
maybe
, somehow, someday, I would again step free of those leg braces—and walk.

Though hemophilia is a hereditary illness, it often appears without warning because of hidden genetic mutations. There had been no history of it in my family. My parents had met in 1950 in Paris, while they were both on academic scholarships. After a passionate romance that seemed destined for marriage, my father reversed course and enlisted as a lieutenant in the U.S. Navy. After three years of floating around on an aircraft carrier, he reconsidered his decision. When he returned on leave to the United States, he courted and won my mother. At the time she was living in New York, working as a researcher for
Life
magazine. Married in late 1954, they spent the last months of his service at the naval base in Jacksonville, Florida.

In early 1956 my parents discovered that they were going to have a child. My father, at the age of twenty-seven, despite multiple degrees, a Rhodes Scholarship, and a strong record as a military officer, was having a terrible time finding a job. After more than fifty interviews, he finally landed a position as a bank teller. At the last moment, he was invited to become the
assistant to a distinguished journalist and author, a move that set him on the path to writing.

My parents found a tiny apartment they could afford in Eastchester, New York, and my mother spent the spring trying to get the place set up for an infant. By August the city was roiling with heat and the country’s Democrats were meeting in Manhattan to nominate their presidential candidate. As someone who has cared about politics for most of his life—and who has seen many ups and downs in the electoral process—I have always found it amusing that on the day of my birth,
U.S. News & World Report
predicted that by nominating Adlai Stevenson for the second time, the Democrats would be able to overcome the popularity of the incumbent president, Dwight Eisenhower. I came into the world at noon on August 17, 1956, at New York Hospital, which overlooks the East River, in the same town and at the very moment that the Democrats were carefully planning their unintentional path to defeat.

During the first months of my life, there were subtle signs that my parents were about to face difficulties far more complex than raising a child. The use of forceps at my birth had left a large bruise, or hematoma, at the back of my neck, which took a long time to go down. My father managed to get himself reassigned to the editorial staff of
Collier’s
magazine. Things seemed to be looking up—until one Sunday, the week before Christmas, the magazine’s employees received telegrams saying that
Collier’s
had collapsed. They had all been officially out of work since the previous Friday.

Without severance pay, insurance, or savings, my parents
were financially desperate. To buy food and pay the rent, they went on welfare, which at that time was $36 a week. My father plunged into looking for new work. Happily, he found a job in a month, this time writing book reviews for
Newsweek
.

In early January my uncle Kim came to visit, and he rolled me around my playpen and tossed me in the air while I laughed and gurgled happily. Not long after his visit I had a small bruise on my left forearm. At my next routine doctor’s visit, my mother pointed out the bruise to my pediatrician, who wondered what might have caused it. He ordered a blood count, then sent us to New York Hospital for more extensive testing.

My mother, joined eventually by my father and my Swiss grandmother, waited all day and evening in the outer offices of New York’s most prominent hematologist to learn the results of the tests. The doctor never came. We went back and waited all the next day. Finally, on the second evening, the doctor appeared, impeccably dressed and greatly rushed. His eyes never left the floor as he spoke to my parents. “The child has classical hemophilia,” he announced, and then added enigmatically, “There will be compensations, you may be sure.” With those mystifying words, he turned and left.

“I don’t know what we did then,” my mother wrote years later. “I can’t remember leaving the hospital or finding the car in the parking lot. Somehow, we reached the safe haven of our tiny apartment with its packing crate for a table and its single kitchen chair. In one cataclysmic moment our world had been shattered. We only numbly recognized our familiar surroundings.
We wept there, the three of us—Bob, my mother, and I—clinging to each other, helpless and alone. Without warning, as surely as if we had been abandoned on the bleak surface of the moon, our lives had changed. We had no idea what lay ahead.”

Years later I learned how hard they worked over the coming months—to identify the right questions, the right doctors, the right treatments. Most of what they learned was grim. Human joints are marvels of engineering, and to supply all the muscles and tissues with oxygen and other nutrients requires an almost infinitely complex network of tiny, fragile blood vessels. No carpenter strikes a blow, no basketball player lands after a jump shot, without sending a jolt through his or her joints. Frequently these shocks cause the tiny blood vessels to break, and blood begins to leak into the cavity of the ankle, the elbow, the knee. Most human beings never feel these injuries because the coagulation system quickly plugs the leaks. As a child I used to imagine all the parts of the coagulation system speeding toward the wounded area the same way that firefighters and EMTs rush to an accident. For a child with hemophilia, however, the coagulation system breaks down. The ambulances and fire trucks all have flat tires; no one shows up at the crash site. As a result, blood slowly fills the joint cavity around the ends of bone and between strands of muscle tissue. As the amount of blood increases, the pressure builds, and the pressure brings pain, first distant and diffuse, then sharper and
more focused. Eventually, when there is no more room, the joint becomes rigid, but even then the blood continues to leak; the pressure mounts, and the pain relentlessly mounts with it. When I was a child—and still, fifty years later—there were really only two things that would stop this internal bleeding: injecting Factor VIII, which enables clotting to occur, or elevating the joint and bathing it in ice, which somewhat slows the rate of bleeding.

My parents, both journalists, directed all of their love and all of their professional skills into protecting me. To become the best possible care providers for me, they felt that they needed to know everything—the medical and biochemical details of the disease, the names and advice of the best doctors, the recommended forms of care both inside and outside the hospital. They made phone calls and interviewed doctors and researchers whose names floated like the names of distant saints through the backgrounds of our conversation. My mother steeled herself against the shocked and disapproving glares she met at the grocery store, where other suburban moms looked at my bruises and concluded that she had been beating me.

Nonetheless, they surrounded me with optimism. They talked to me and played games with me and cooked my favorite foods. When my sister, Susanna, was born a few months before my second birthday, they folded her into what seemed—to me—to be our truly happy family.

It was then that we moved into our two-bedroom ranch house in White Plains, New York. For many years, whenever
I was asked about my childhood, I could mostly call up happy circumstances of my early life. It took years for me to make sense of the strange life I actually lived, a life that careened between love and pain. I could be experiencing all the normal daily pleasures of being a child when suddenly, without warning, a terrifying crisis would begin. My parents exhibited extraordinary devotion, vigilance, and discipline. Even in the most agonizing assaults, they became the vehicles through which love emerged to offer comfort, to begin the healing, and to signal that ahead there still lay hope.

Some of the incidents, I now see, were so frightening and overwhelming that my mind quickly deleted them from my active memory. When I draw them up now, decades later, I feel great grief and sorrow for the tiny boy who was subjected to such awful duress but could not yet understand why this was happening to him, and for his parents, who were powerless to protect him.