A Song in the Night

F
rom 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 are unaware, is internal joint bleeding. This problem causes severe, extremely painful 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 to 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 be mine again.

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.