Read an Excerpt
Love and Pain
From my earliest moments, my life was marked by deep joy interrupted regularly by searing physical pain. A strange pairing, perhaps, but not wholly uncommon. The pleasures of my childhood were frequent and pure. I had a natural tendency toward exuberance; I often experienced unadorned delight at the most normal of moments. I felt the deep devotion of others, beginning with my parents, who made me feel safe even when I was in misery.
I was born with a severe genetic illness, classical hemophilia, in which the absence or malfunction of a single protein known as Factor VIII interrupts the process of coagulation that stops bleeding. As a result, blood that might normally clot in five minutes instead takes forty-five minutes to an hour or even longer. Of course this causes problems with cuts and bruising, both of which take longer than usual to heal. The most dangerous problem, of which most people, including my parents, were completely unaware, is internal joint bleeding. This problem causes severe, extremely painful internal swelling of the joints, which in my case gradually destroyed my knees and ankles. For this reason I have almost no memories of what it was like to be able to skip or to run around my house or my backyard—except for one particular incident.
In the early 1960s we were living in a small house on Northampton Drive in White Plains, New York. We had a swing and a sandbox in the backyard and a weeping willow next to the garage. I conducted experiments at the breakfast table, such as pouring my chocolate milk into my orange juice on the theory that if they tasted good separately, they would taste even better in combination. I put cloth napkins over the lamps in the living room to see what would happen, and realized when they started to turn brown and emit wisps of smoke that this was probably not a good idea.
When I was four—about the time John F. Kennedy became president—my parents enrolled me in a tiny nursery school set up in an old home tucked away from the street. A large area of grass and trees encircled the home, and on one corner of the property sat a small menagerie of farm animals in various pens and cages. Once a week we would visit these animals, which included an old horse, a few indifferent rabbits and a small, grumpy goat.
Daily recess, held on the yard directly in front of the old home, brought its own pleasures and challenges. In the middle of the once elegant grass sat an old-fashioned red fire truck sunk past its axles in the dirt. It had been donated to the school as a climbing structure. Stripped of its tools and hoses and left open to the elements, the fire truck had tarnished brass fixtures and cracked leather seats. Still, this wreck appeared in our eyes as the most magnificent chariot on earth. Everyone wanted to sit in the driver’s seat. The honor fell each day to the fastest runner.
We would line up on the porch of the old house, jostling like young thoroughbreds at a starting gate, forbidden to move until the signal was given. Released, we would bound down the steps and race over the grass toward the fire truck, laughing and gulping for air. I lost that sprint many times, but on one glorious day I made it to the truck first.
I can still recall the blessed sensation of what it is like to run: the intoxication of blurred grass beneath my feet, the exhilaration of momentary flight as the back foot leaves the ground just before the front one touches down, the overall thrill as one’s vision is smudged by speed.
When I vaulted into the driver’s seat, I seized the great steering wheel with both hands and would not yield my place until recess had ended. As I trudged slowly back to the school, I let my classmates dash ahead.
Entering the front door of the school, I turned to look one more time at the fire truck on the lawn. The sunlight made the red paint on the truck glow like fire. Why is that image burned in my memory? Perhaps it was a premonition that I was saying goodbye to a form of pleasure that would never again be mine.
In the months following, the joint bleedings got much worse. Capillaries inside a muscle or a joint would break and pressure would build inside a knee or an ankle until I became delirious with pain. Recovery took weeks. Within a year of nursery school, the bleedings had become so frequent and so brutal that I lost the ability to walk.
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 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, 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 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 out 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. They made detailed lists of questions. 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 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 suffering. 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.