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 called quads so that my knees effortlessly hyperextend, so the slick crease behind them presses into my bedsheet. Many years later, in a future I can’t imagine on this hot night, I will laboriously perform this same stretch 20 times in a row on the orders of a physical therapist. But tonight, I stretch my legs gloriously straight just once, a flash, and then I curl my feet up to my bottom like a potato bug.
My dad is snoring a low rumble. My mom is snoring in alto counterpoint on her side of the bed.
I get out of bed and walk sideways down the carpeted stairs, stepping as close to the wall as possible to avoid creaking. My brother taught me that. I support myself with one arm against the grass wallpaper. Not very much later, I will find I have to walk up and down all stairways sideways to minimize pain in the balls of my feet and because my knees will freeze, incapable of the fluid perpetual motion of leaving one step as I reach for the next. But tonight, my body is not yet calling the shots. Tonight, my body is incidental.
I turn left and go into the living room. I sit on the piano bench. I put my feet over the brass pedals of the Wurlitzer upright. The pedals are cold, and they fit into the space between my foot and my toe. I open the fallboard. My piano books are stacked on top of the piano. I open a book to find the solo I played at my first competition, at Peabody Conservatory in Baltimore, in the spring: “Flamenco.” I won a first-place ribbon.
I put my fingers on the plastic keys. They are not cold. They are the same temperature as my body. I depress a key slowly so it will not make a sound. I will get in trouble if I wake anyone up. But now that I am here, I must play. I cannot stand it.
I push a key again, this time a little harder. I keep my left foot on the una corda, or soft pedal. This is my bargain: I will go back to sleep in my own hot room if I can play for a few minutes. I cannot go back to sleep if I do not hear the piano first.
I make a sound, and then I must hear another. I keep one foot on the soft pedal and another on the damper pedal, because I love the way it sounds when the notes are all mushed together like coins in a piggy bank.
Sotto voce, pianissimo, I promise. I reach up and turn on the piano light, which instantly makes me hotter and stickier.
But the heat makes the muscles in my fingers limber, and the sweat on the pads of my fingers makes them fleet. They move quickly over the tops of the keys, nearly slipping off. I try to stay quiet, but I am playing.
This is home. This is the tonic. Tonic: taken in doses, it restores you to health.
I am 14; it has been two years since my diagnosis of rheumatoid arthritis, four years from that hot night at the piano.
I’m home sick, again, from school, but I will not spend the day at the Wurlitzer. I know I am truly, differently sick, because even though I am older, I am not home alone. My dad is downstairs, and I’m in the upstairs bathroom, trying to get into my bathing suit. I can’t do it. My hands are too weak to hold on and pull.
I want to get into my bathing suit so I can go soak in the hot tub. I want to soak in the hot tub because I want to be surrounded by something hotter than my own skin, because I want to boil off the stiffness and pain that greeted me when I awoke this morning. Water is the kindest atmosphere; in water, less is asked of me. Water buoys my joints. In water, I can almost forget the horrible, heavy fact of lugging a body around. I get the bathing suit up to my belly button. My arms are through the armholes, but the armholes are down by my waist, so my arms are strapped to my side and I’m in a straitjacket. I’m stuck. I can’t get the bathing suit up or down. I will be like this forever.
The girl in the mirror has ragamuffin hair stuck to her face because her face is wet with tears and sweat and fever, and I see her bare shoulders and brand-new, inadequate breasts and her hunched form, and I am disgusted. I think, No one will ever want you.
I don’t remember how I got out of the bathing suit, whether it went up or down, or if I ever got into the hot tub that day. In the more than 25 years since I received a diagnosis of rheumatoid arthritis at 12, this point — in my disease’s infancy — is among my lowest. I am ashamed of it. Not because of my helplessness — after all, a kid can get stuck in a bathing suit and it can be a funny story — or because of what it reveals about my body or how sick I really was. I am ashamed of what I thought. What I said, even silently, to a helpless, hurting kid, even if that kid was me.
I am ashamed that this moment, this raw note, is not truly discordant, that it suggests a key to which I could easily modulate, a key I was, and am always, in danger of living in.