A Song in the Night (3 page)

I only began to understand and to retain my experiences as I gained the capacity for language. I still remember the wedge of light from the hallway lighting up the warm golden ash of the slats of my crib as my parents closed the door and wished me goodnight. I recall whispering in the dark to Teddy, my twelve-inch stuffed bear, who went with me everywhere, even on those terrible nights when my parents realized that I had to be lifted from bed, bundled tenderly into the car, and driven at high speed to the hospital.

I would lie in the backseat, streetlights streaking rhythmically by overhead, and for a moment I would imagine that I was a grown-up, off to some important nighttime adventure. We would pull up to the hospital—Cross County Medical Center, in the middle of a shopping mall, just off the highway that led into Manhattan. On arrival, my parents would fill out pages of paperwork while the hematologist was called; all the time we waited, the swelling and the pain in my joint rose steadily. When he came, he would examine me and confirm my need for plasma. Only then would fresh frozen plasma—the only source of Factor VIII—be ordered from the blood bank, slowly procured, slowly thawed: more delays, more swelling.

When the plasma finally arrived and the doctor threaded the needle into a vein in my arm, a small stream of crimson blood would slide back up the tubing, indicating that the connection had been made, and the precious drops of yellow plasma would start dripping into my bloodstream, into the big veins and arteries and down through ever-smaller tributaries, taking Factor VIII within seconds to the damaged spot. This enabled healing to begin and, within hours, brought a slow end to the fire of pain.

While I sat in the small room with the white tiles, the plasma lazily dripping from its container suspended on an infusion pole, my mother sat beside me, stroking my hair, and my father stood nearby, gazing at me with sorrow, coming over from time to time to squeeze my hand. My mother kept up a stream of whispered words:
Here, look at this book, Bobby, remember this book
, she would say, trying to distract and amuse me.

My eyes focused on the golden liquid inside the tubing: drip, drip, drip.

Bobby
, she said,
look at this. You will feel better. This is not going to last forever
.

Sometimes she held my face and made me look into her eyes.

And when you feel better
, she said,
we will go dancing in Paris. Do you promise me that, Bobby?

I nodded with exhaustion, though my mind was starting to picture it.

I’ve been there. There are lights all up and down the streets and in the restaurants, and everywhere we will find the most wonderful music and food
.

I could see it. I tried to smile.

I know this will happen, Bobby
, she whispered to me.
You will get big and we will go dancing in Paris. You will be big and strong and you will be able to go. Will you do that with me?

Yes, Mommy
, I said earnestly,
I will
.

It breaks my heart to think how seriously I spoke those words as a three-year-old. But I believed that someday it all would happen, and that belief carried me through my misery and terror.

The healing often took weeks to complete. When the active bleeding stopped, the body’s immune and enzymatic systems would attack the blood cells that had escaped into the joint, break them down, and reabsorb them.

In theory, that should have been the end of the story. Unfortunately, each bleeding left a legacy that made another
one more likely. The period of disuse caused the muscles of the joint to atrophy, so as I tried to move again, I found myself weaker, and thus more likely to apply too much stress to the newly healed joint. The enzymes that helped reabsorb the loose cells also corroded the inner lining of the joint, degrading the joint’s ability to bend smoothly. Repeated bleedings and reabsorptions steadily reduced the range of motion of each affected joint. The knees and elbows particularly refused to straighten or bend all the way. So when I began to use my body again, with its slightly weaker muscles, slightly rougher and less functional joints, it was only a matter of time before another bleeding knocked me down and carried me further toward permanent damage. Without any medications to prevent these bleedings, the spiral was inevitable.

For these reasons, and because of the danger of concussion, the life expectancy of a hemophiliac when I was born was less than thirty years. Doctors grimly told my parents that the best hope was to limit my bleeding until I had completed puberty, when the end to my growth might enable my joints to stabilize.

As every season passed and I became bigger and heavier and more active, the stress on my joints increased. The number of joint bleedings and the plasma infusions to treat them steadily rose. I could see the increasing time it took to recover from each episode, and I could tell that my abilities were gradually shrinking.

My mother tried to get me to exercise. During the weeks I was in bed, she strapped me into leg-stretching contraptions prescribed by my doctors to help with my recovery. Some were quite ingenious—attached by small vises to the footboard
of the bed, they had little girders that rose above the bed and ended in small pulleys. My mother would lace a small cloth boot to my ankle and connect it to a piece of rope that ran up and over the various pulleys until it reached a place where she could attach small bags of sand to the end. The treatment called for gradually increasing the weight in the sandbags so that the mild, steady pressure would gradually straighten out my crooked and locked joints.

I hated these machines. The pulleys and sandbags caused sharp discomfort. The endlessly repeated isometric exercises—just tightening and loosening my trembling muscles—never seemed to make any difference. I wore the boots as little as possible. After patiently coaxing me to use them, only to watch me kick them off, my parents would sometimes throw up their hands in frustration. “We just don’t know what to do, Bobby! You
have
to use this. If you don’t, your legs will bend up a little more after every bleeding. And they are
your
legs!”

Most of the time the swelling eventually went down and I could get the leg straight enough to put weight on it. And then I would forget about the incident and try to return as swiftly as possible to the pressing duties of being an energetic boy. Finally, on one occasion that I have blocked from my memory, I had such a massive bleeding that the knee slowly jackknifed. I would not be able to put weight on it again for more than seven years.

With a marvelous combination of sympathy and challenge, my parents helped me fight off the occasional bouts of depression
that would seize me when I was confined to my bed. They brought me books and games, helped me learn to cook, and refused to let me belittle or pity myself. During the long, boring stretches of convalescence, my mother in particular constantly looked for ways to make little, demonstrable improvements. Instinctively she knew ways to cheer me up: by straightening up the pillows to support my swollen knee, by organizing my colored pencils and paper so they would be readily accessible, or by bringing me a surprise pizza. During those interminable nights when pain banished sleep, she spent hours holding my hand and telling me stories of faraway places.

My father, consumed by work, also tried heroically to reinforce my confidence and hope. He surprised me completely one day when I was about five. He came and sat on my bed, looked at my legs, which were tied up in the infernal joint-stretching pulley machine, and said to me, “I know this must be terribly hard for you, Bobby. I just wish I could cut off and give you both of my own legs.”

“What?” I said, shocked.

“Well, this is the way I think about it. I have had my legs for a while now—about thirty years. I have gotten pretty good use out of them. I think it would only be fair for me to be able to exchange them for yours so that you could get around on them now.”

“But why would you do that?” I asked, staring at him. I simply could not imagine that someone would be willing to make such a sacrifice.

“Well,” he said, “there’s really only one reason, and that’s
because I love you.” Then he touched my head and left the room.

In the prison of pain, love offers the only solace. I had no words to describe what I was experiencing, no way to understand how my life compared to anyone else’s. As for every child, the boundaries of my life were foreshortened to what I could see around me, how people reacted to me, what lay before me in the moment. I had no way to care for myself, to predict what was likely to happen to me, or to respond when a crisis hit. All I could do was cling to the hope that the adults around me would help me. My parents, no matter how tired and worried they must often have been, guarded me from the abyss of danger and fear that threatened almost daily to pull me in.

One particular incident illustrated their courage and tenacity in defending me. I remember standing near the side of a brightly lit classroom in elementary school filled with small desks and bulletin boards and children’s drawings. For some reason a child reached forward, planted his hand in the center of my chest, and shoved me backward. I fell hard against a closed door and felt the doorknob strike me near the center of my back. Though I had the wind knocked out of me, I recovered quickly.

At the end of the day I joined my family for a drive from Westchester County to Northampton in western Massachusetts. My mother’s youngest sister, Jeannine, had invited my father to give a talk at Smith College, where she was an
undergraduate, and we were all excited to visit her. When we arrived at the hotel, my parents put my sister and me to sleep in a big bed.

In a few hours, however, I awoke in terrible pain. The bruise from the doorknob had swelled to the size of a goose egg, and it was rapidly getting bigger. My parents put a bag of ice on it, but they could see that the bruise was spreading across my back and under the ribs. Soon we found ourselves at Northampton’s Cooley Dickinson Hospital, where my parents consulted with the doctors in the emergency room. After examining me, they all agreed that I needed an infusion of fresh frozen plasma. There was one catch: the hospital did not have any. It was the middle of the night. Both Boston and New York were many hours away.

The adults conferred quietly while I drifted into the haze of pain. I floated into a stupor, trying to hold back the panic that made me want to throw up.

When I opened my eyes later, I could not believe what I saw. My father was lying on a table in the same room, near the opposite wall. A large needle had been inserted into his arm, and his dark venous blood was draining into a sterile plastic infusion bag hung below the table. My mother came over to explain to me what was happening.

“We could not find any plasma anywhere in the hospital,” she said, “and the doctors could think of only one way to get Factor VIII into you. They are going to give you whole blood.”

“Whole blood?” I knew so little, but I understood that this
meant dark red blood, full of red and white cells, with only a tiny amount of Factor VIII floating around.

“Whole blood from Daddy,” she explained patiently. “As soon as they have drawn enough blood from his arm, they will begin to put it into you.”

I lay there and looked across the room. A few feet away, illuminated by the pale yellow light of dawn coursing through the window, lay my father, staring resolutely at the ceiling. His maroon-colored blood was flowing through a clear tube out of his arm, filling a plastic bag, destined for me. I gazed at him, and my child’s mind was overwhelmed with exhaustion, and fear, and the shock of being loved so much.

My father turned his head and looked over toward me; his face was drawn with exhaustion, but he looked carefully into my eyes.

“It’s going to be all right, Bobby,” he said quietly. “I promise you, it’s going to be all right.”