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.
Twelve
Tovah
EVERY PATIENT HAS MY SISTER’S face. My mother’s. When I landed this hospital volunteer spot, I felt victorious, though I only work a four-hour shift every other week. I wanted more hours, but so did all the other high school volunteers who want to become doctors.
Today four hours might as well be forty. It’s my first shift since our results, and though I’m essentially a delivery girl—ferrying flower arrangements from the front desk to patients’ rooms, ensuring patients have water and blankets—I can’t concentrate.
“Can you deliver this to room 2420?” a nurse asks me from behind a person-size bouquet of roses. The tiny elderly woman is so happy to see it, her eyes well up.
I wonder who will bring flowers for Adina one day.
As I’m leaving the room, the tag outside the door informs me it’s 2240, not 2420, meaning whoever’s in 2420 is flowerless. I’m not about to steal the roses back, so I buy the nicest arrangement in the gift shop I can afford, scribble We’re all thinking of you. Get well soon on the card, and present it to the man in the right room.
I’m relieved when my shift ends. When I pull out my phone in the lobby, I have three missed calls from Lindsay, which is odd because I can’t remember the last time the two of us talked on the phone. I’m debating calling her back—I’m still annoyed with her for essentially ignoring me after the test results—when she calls again.
“Is everything okay?” I ask as I head into the hospital parking garage.
There’s a long, shuddering breath on the end of the line. “No.”
When she doesn’t elaborate, I say, heart rate picking up speed, “You’re going to have to give me more than that. Are you hurt? Is it something with Troy?”
“I’m at the Bartell’s on Forty-Fifth,” she says, “buying a pregnancy test. And I thought I could do it by myself, but I’m on the verge of a meltdown in the pregnancy test aisle, and did they have to put the pregnancy tests right next to the diapers?”
The words “pregnancy test” obliterate every other thought in my head. I unlock my car and jam the key in the ignition. “I can be there in ten minutes.”
Lindsay’s sitting on the aisle floor, hood pulled up over her head.
“Linds.” I sink down next to her and place what I hope is a comforting hand on her shoulder. Obviously I knew Lindsay and Troy were having sex, but we all put condoms on bananas in health class. We learned about the pill and the patch and what our teacher called “outercourse.” While I blushed through the entire sex-ed unit, I was glad no one simply told us “don’t do it.”
“Thanks for coming,” she says. She sniffs but doesn’t cry. “Can you pick one for me? I can’t decide. There’s too many.”
She’s right. Rows and rows of brightly colored boxes loom over us. “Probably not the kind that shows a smiley face if it’s positive?” It’s a horrible joke, but I’m not sure what else to say.
Fortunately, Lindsay’s not offended. “No, probably not,” she says, chewing back a smile. “Get two? To be sure?”
I grab the least pregnancy-is-a-beautiful-gift-looking ones and pull her to her feet and toward the front of the store. With her eyes cast downward, she hands a wad of bills to the red-smocked cashier. The impulse-buy section tempts me; I buy a few pieces of candy, because whatever the outcome of these tests, we’re going to need the mood-boosting phenylethylamine chocolate provides.
We decide without words that I will drive us both to Lindsay’s. I nibble a chocolate bar while we sit in traffic, though Lindsay just plays with the wrapper of the one I give her.
“Does Troy know about this?”
“No. I didn’t want to tell him until I knew for sure,” she says, and maybe it’s the phenylethylamine, but it feels good to have something that, for now, is only mine and Lindsay’s.
Lindsay flips on the lights in her dad’s single-story condo. Her parents divorced a few years ago, and she spends weekdays and every other weekend with her dad because her mom’s busy with school. She worked twenty years as an accountant before realizing it was draining the enjoyment from her life. After the divorce, she adopted two cats and a guinea pig and went back to school to become a veterinary technician.
Lindsay has always wanted to do it right the first time: go to the right school, get the right degree, marry the right person. It’s why she pushes herself with so many AP classes. However, she’s not as certain about what she wants as Adina or Zack or Troy or I am, only that she’ll figure it out once she gets to college. She likes most of her classes but doesn’t seem to deeply love any singular thing.
In the bathroom, Lindsay crosses her legs on the rug and I lean my back against the cabinet next to her.
“How did this happen?” I say as calmly as I can.
Lindsay sighs. “We started having sex without a condom. A couple months ago.”
“Without a condom?” I practically yell, and then get ahold of myself and lower my voice. “Sorry. But . . . without a condom?”
“We’re the only people we’ve ever been with. And I’m on birth control.” Twin pink spots appear on her cheeks. “We wanted to know what it would feel like. Without one.”
My face is burning too. “What did it feel like?”
She digs a hand into her thick black hair and pulls it across her face. Hiding. “I don’t know. Different. But then I missed my period. It’s two weeks late, I think. I’m not great at keeping track.” She yanks more of her hair across her face when I raise my eyebrows at her. “I know. I know. Believe me, I know. So I started googling things last night, and did you know pretty much any minor discomfo
rt can be a pregnancy symptom? Mood swings. Fatigue. I was like, shit, I’m always tired.” She laughs, and this gives me permission to join in.
I’m probably supposed to say something reassuring like, I’m sure you’re not pregnant! But instead I say, “Let’s do this,” and I open one box and she opens the other, and I glance away while she pees on both sticks.
“And now we wait,” she says, perching them on the sink edge.
Wait. Her words knife through my stomach. Lindsay will know right away if her life will change. I had to wait four years.
The next few minutes are quiet, except for the sound of Lindsay yanking at stray threads on the bath rug. Silences aren’t supposed to be uncomfortable between close friends, but this one makes me itchy. Makes me wish I’d talked more in the weeks surrounding my own fateful test—if not to Lindsay, then to Adina, who clearly wanted to.
When her phone timer goes off, Lindsay snatches the two sticks and exhales deeply. “Negative. Thank God,” she says. “I’m going to buy a jumbo box of condoms this weekend.”
We’re lying on pillows on the floor in Lindsay’s room, an empty pizza box between us. Lindsay painted her nails gray and I painted my toes a glittery blue while we quizzed each other on Hamlet for our AP Lit test next week. We have school off tomorrow, and it’s been eons since I spent the night here. I’d forgotten she keeps a bottle of vodka (certified kosher, according to the label) hidden in her underwear drawer, which we drank shots of with our veggie pizza.
I’ve missed all this, as unremarkable as it is.
“Somehow, I thought senior year would be easier,” Lindsay says. “But it’s just as much work as ever. More, actually.”
“It’ll be worth it.”
She examines a smudged gray nail and twists open the polish to touch it up. “Can you believe I applied to fifteen schools? A little excessive, but I have to get out of this gloomy place. California sounds nice. Or Florida, or Arizona . . . somewhere warm.”
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