Excerpted from “Sonata: A Memoir of Pain and the Piano,” and republished with permission from Pegasus Books
There was a painfully short before, and then the rest came after. The first 12 years of my life, I lived in another body.
Those 12 years before 1989 get smaller and smaller in the rearview mirror: They were once all I’d known, then the better half, now just a blip. Like matter itself, they will never entirely disappear.
In this “before,” I was going to be a pianist. I was not crazy to think so. By some magic of genetics and environment, the keys rose to meet my fingers and music came. And then, too soon, by some inverted miracle of genetics and environment, rheumatoid arthritis appeared. The keys still rose to meet my fingers, but my curling fingers recoiled. For too long, I tried to be arthritic and a pianist.
For too long, I refused to believe that I could not be both. For decades, with swelling and crumbling hands, I groped at the piano, kneading, fearing that if I lost it, I would lose the only thing I liked about myself. Well into foolish adulthood, music swelled up inside me, infectious, a boil in need of lancing, and I kept one bruised and brutalized hand on the keyboard. With the other hand, I tried to fend off the disease — as precocious as my musical talent itself — that threatened to become the most notable thing about me.
It’s a swampy Maryland summer, 1985. It’s hot in my room. I can’t sleep. I have the window open. I turn my pillow over. I kick the flimsy plaid bedspread to the floor. I flail and flop, and the tips of my hair get stuck in the sweaty creases of my armpits. “When you have a house of your own,” my dad likes to say, “you can run the air-conditioning as much as you damn well please.” I am 8. A house of my own is a long way off. I’m going to be fever-hot forever. I extend my long, suntanned legs. Reflexively, I deploy the muscles I don’t yet know are…