Eleven
Adina
SOMETHING IS DIFFERENT ABOUT ME. I can’t see it, can’t feel it, but I know it’s there. It has been hiding in me for eighteen years. I’ve gone eighteen fucking years not knowing I am a ticking time bomb.
The day after we get our results, I skip school. My parents told Tovah she could stay home too, but she had a quiz in AP Statistics and a test in AP Bio and a presentation in AP Lit, and naturally, she couldn’t miss any of them.
“If you want, I can keep you company, Adina’le,” Ima says to me Thursday morning after Aba and Tovah have left. Her arm flaps. One day that will be me. “My aide can handle the class today, or I’ll get a . . . I can’t think of the word, but you know what I mean.”
Impatience twists in my stomach. I am usually so gentle with my mother, but today her memory lapse makes me wince. “Substitute. And I’ll be fine on my own.” I tell myself the reason I don’t want her to stay with me is that she loves teaching, and I don’t want her to miss a single day of it. But the real reason is closer to this: every time she gropes for a word or jerks involuntarily, my ribs press together so tightly I worry they’ll snap like twigs. And the next time she hallucinates—
Tick, tick, tick . . .
Huntington’s turns my loving mother cold and monstrous and foreign. Crazy, some might say. You aren’t supposed to see your parents in that kind of agony—something I cannot forgive God for.
I wonder what it will do to me.
I fall back asleep and at ten thirty wake up groggier than I was at six thirty. My hair is tangled and my mouth is stained pink from yesterday’s Siren lipstick and mascara crumbs dot my cheeks, but I don’t feel like showering or changing out of my pajamas.
Music has always brought me comfort. When Papa, Aba’s father, passed away, I spent the entire month playing Prokofiev. After Ima was diagnosed, it was Bach. Now it is Debussy.
The prelude itself is not complex, but the challenge lies in its simplicity, how you convey the innocence of the pastoral girl. I will settle for nothing less than perfection. I practice for hours, until the pads of my fingers throb and my legs are stiff from standing, but I force myself to keep going.
Until it hits me: one day I won’t be able to do this anymore. My hands will act out, and my fingers will misbehave, and my mind will forget. I stagger backward, tucking my viola into its case before I collapse onto my bed, holding my head in my hands. I stay like that, counting measures, counting beats and breaths.
Then I close the music book and run my thumbnail along the crease so I don’t have to look at it, though I’m close to memorizing the prelude. Arjun would be pleased.
Arjun Bhakta, who prepares for snowstorms that never come, who knows my secret, who sent me away.
I lay my head back on my pillow, focusing on the way his hands gripped the arms of his chair, the way his back muscles flexed against his shirt, the way he growled my name. I slip my hand inside my underwear. In my mind he doesn’t pull away. He wraps me in his arms and kisses me back. I unbutton his shirt and reach inside his corduroy pants, feeling him everywhere.
I wonder if he’d be gentle, andante, the way a slow piece of music swells to a powerful, intense climax. Or if he’d be fierce, prestissimo, crashing into me like he can’t get close enough.
In this fantasy, he can be all those things.
Tovah said we’d deal with it together. The night we learned about Ima’s diagnosis, that’s what she promised. Here are the times I have needed someone to deal with it with me:
The morning after we found out about Ima.
The day after that.
A week later, when I broke down in the middle school girls’ bathroom and wiped my face with the too-rough toilet paper until it was red everywhere.
Two months after that when Ima screamed at Aba for burning a pot of rice.
A year after that when Ima hallucinated spiders crawling all over the kitchen floor and it scared me.
When Tovah decided she’d rather live abroad for a year instead of with our gloomy little family.
When I found the applications on her computer.
The moment I pressed delete.
The day we turned eighteen.
The morning we took the test.
A thousand times in between.
Tovah used to be in orchestra too. She played violin for a year in fourth grade before declaring all the music we played boring. To convince her to stick with it, I dragged my viola into her room and gave her an impromptu concert, though back then all I could play were “Hot Cross Buns” and “Twinkle, Twinkle, Little Star.”
Tovah made a face. “I’d rather play something you can actually sing along to. Like Aba’s music.” I detested Aba’s music. It was so loud. It grated.
“You can sing along to ‘Hot Cross Buns,’ ” I insisted, and I started the song again. “Hot cross buns. Hot cross buns. Something-something, something-something . . . hot cross buns!”
Tovah snorted. “Please don’t sing, Adi,” she said, and I was thankful when we traded those little-kid songs for pieces by classical composers. But Tovah quit anyway.
You try out so many hobbies when you’re young, and you outgrow them the same way you outgrow overalls and sandboxes and baby teeth. Viola was something I could never outgrow. It was my power to create, to take risks, to be bold. I have never felt as natural as I do with my chin on my Primavera and a bow in my hand. The instrument and I, we fit.
Sunday morning, someone knocks on my door. I called in sick to work this week, skipped youth symphony rehearsal, slept through Shabbat. I am a perfect Jew. I haven’t touched electronics or money or done any kind of work. I rest, rest, rest.
I bolt upright in bed. “I’m . . .” Not doing anything. My viola’s in its case. My battery-drained laptop is on my desk. My parents want me to talk to our rabbi—not happening—and we’re supposed to go to family counseling “when I’m up to it,” but I don’t know when that will be. The longer I keep everything inside, the longer it doesn’t exist. That logic is flawed, but I can’t handle it any other way.
“Please.” Tovah. When I don’t reply, she interprets my silence as tacit approval and enters holding a stack of papers. We used to spend so much time in each other’s rooms. Sometimes one of us dragged a sleeping bag across the hall for a “sleepover.” We gossiped and watched bad movies and talked about all the things we wanted so badly we ached for them.
“I found some new information online,” Tovah says. “I’ve been doing a lot of research about support groups and counseling. And there are these supplements some people take that can potentially slow the onset of—”
“I know how to use the Internet.”
This is what Tovah does: She researches. She studies. The muscles in her jaw ripple. “I wanted to help.” Before she turns to leave, she slides the papers onto my nightstand.
“Are you going somewhere?” I ask, noticing she’s wearing a backpack.
“Oh. Yeah.” She rocks back and forth on her feet. “Volunteering at the hospital, then probably studying at the library.”
In other words: life as usual.
If our results were flipped, Tovah would have plenty of people to talk to, to stroke her hair and tell her hakol yihyeh b’seder. Lindsay would console her and the entire student council would organize a benefit for Huntington’s research. They would collect a record-breaking amount of money and present one of those giant checks to a charity organization, and Tovah would be smiling in all the photos.
“Close the door behind you.”
Once her footsteps fade, I allow myself a peek at her research.
NEW RESEARCH LEADS TO BETTER TREATMENT FOR HUNTINGTON’S DISEASE. . . .
HUNTINGTON’S PATIENTS: 10 TIPS TO KEEP YOUR BRAIN YOUNG. . . .
SOME INDIVIDUALS DEVELOP SYMPTOMS IN THEIR LATE-TEENAGE YEARS. . . .
I blink and read that section more closely.
Some individuals develop symptoms in their late-teenage years or early twenties. Huntington’s may progress more quickly in teenagers.
I knew it was possible for symptoms to develop earlier than they did for Ima, and there is no way to predict when they’ll start. It is rare, the article tells me, for symptoms to develop so young, but rare still means possible.
I take my laptop to bed and grope around for the power cord. I balance it on my thighs, its heat warming my always-cold skin. No patience for reading, I watch videos. Some patients twitch and jerk like Ima, speak slowly like Ima, though without her distinct Israeli accent. Each month she sheds part of herself as the disease chews her up from the inside out.
My future will unfold in every corner of this house, in the kitchen and in the living room and next to me at the dinner table. A hooded figure with a scythe creeping closer and closer and closer . . .
At first my symptoms will be so slight that no one will notice but me: involuntary twitches in my face and fingers, a wrong note on the viola. Forgetting names and conversations, losing coordination, trouble processing long pieces of music, irritability, depression. Then I’ll struggle with my balance. I won’t be able to stand still onstage. I’ll have trouble walking and swallowing. I’ll lose weight. Chorea—that’s what they call the involuntary movements of someone with Huntington’s—will get worse. At that point, I estimate, I’ll have to give up viola. I might never become a soloist. I might forget how to play entirely. Erase these past nine years of my life.
Near the end, I will lose my ability to speak. I won’t be able to use the bathroom by myself. I will have to be tube-fed and I will no longer live among people I love, but in a nursing home, among the elderly with melting-plastic faces. There, surrounded by needles and beeping devices and suffocated by that thick, sour smell of hospital, I will waste away. No relief, just a slow progression into hell.
I’ve wondered about all this before, cried over it with my door shut and my music loud when I imagined losing my mother, but now there’s an element of realness that cannot be avoided. Before, there was a chance my imaginings were simply that: imaginary. It was a coin flip. Heads or tails.
I shut my laptop. My viola’s across the room, collecting dust bunnies. In the dark, its F-holes look like angry eyebrows, as though the instrument itself is disappointed in me. Although it’s still early and my parents haven’t gone to sleep yet, I can’t bring myself to get up and play again.