“The one that matters, yes. I sent it in last week.” Johns Hopkins University in Baltimore has been my goal since seventh grade, when I went to a summer program there for girls interested in science and medicine. My favorite professor was a surgeon who let us watch an open-heart surgery, and while some of the kids shut their eyes, I was riveted. I’d always loved science class the most, but this—I was watching her physically fix someone. It felt powerful. Important.
Since then I’ve shadowed as many local doctors as I can, and I volunteer at a Seattle hospital. Because I applied early decision, I’ll hear back in December. Biology program at Johns Hopkins, and then, if all goes well, med school there too. The next five to ten years of my life perfectly planned out.
“I bow down to you.” Zack attempts to do so and almost topples over again.
The sight of this nearly six-foot-tall guy stumbling on skates tugs at my heart. Makes it race faster that its usual sixty bpm. My mind, in all its infinite logic, reminds me this crush can’t become anything more than that. My future is too much of a question mark to drag someone else into my life.
Textbooks and exams don’t have emotions. They’re much safer.
The music stops midsong, and the DJ booms over the speakers: “Helloooooo, and thanks for coming out to Great Skate tonight! Everyone having a grrrrrreat time?”
All the kids yell back that yes, they are.
“I can’t hear you,” the DJ taunts in that way all announcers love to do, and we all bellow back, though Zack rolls his eyes at me. “We have a few birthdays here tonight. Can Sienna, Nathan, and . . . Tovah come up here?”
He hesitates before saying my name, the way most people do when faced with an unfamiliar word. It’s not hard to pronounce, but I don’t like how he utters it: like he’s questioning it.
I glare at Lindsay. “You didn’t.”
She tries to make her pale-green eyes innocent. Fails. “Get over there, birthday girl,” she says, laughing as she gives me a push.
“I despise you,” I tell her before skating to the middle of the rink along with the two kids, who blink up at me like I’m, well, an adult at a skating rink full of children. I grind my teeth—my worst habit—and cross my arms, wishing I could shrink to the size of a third grader. My sister, who prefers the company of string instruments to people, would hate it even more.
“How old is everyone turning?” the DJ asks.
Lindsay’s filming a video on her phone. A playful smile bends Zack’s lips, which I’ve imagined kissing only when I feel like torturing myself.
“I’m ten!” yells Nathan, and Sienna one-ups him with, “Eleven!”
“I’m, uh, eighteen,” I mutter, which gets a few laughs and gasps from the kids.
Eighteen. It’s supposed to be a lucky number. Hebrew letters have numerical value, and the word “chai,” meaning “life,” is spelled with two letters that add up to eighteen. It’s a word we toast with—“l’chaim!”—and carry around on necklaces. Since my mother’s diagnosis, eighteen has meant something different. It doesn’t mean luck or life. It means the opposite. The worst thing that could possibly happen, multiplied by eighteen, raised to the eighteenth power.
I don’t know the Hebrew word for that.
The DJ leads everyone in “Happy Birthday,” and I suffer through thirty more seconds of humiliation. As I skate back to my friends, the DJ says, “Now it’s time for you to find that special someone for our couples skate.”
The lights turn red. Seal’s “Kiss from a Rose” starts playing, though none of us are old enough to remember when it was actually popular. If it ever was. My taste is more nineties grunge, thanks to my father’s lifelong Nirvana obsession. No one else in our family can stand Kurt Cobain’s growl or distorted guitar.
Tonight the couples skate fills me with more dread than it did when I was twelve. Lindsay and Troy are already slowly circling the rink. The kids pair off, their nervous laughter mixing with Seal’s velvety vocals. I envy their naive confidence.
Zack’s gaze meets mine. His eyebrows lift. My heart plummets.
“I’m going to take a break,” I say quickly. He can’t ask me to skate with him—because I can’t say yes. Before he can reply, I clomp off the rink.
Before entering my house, I kiss my fingertips and touch them to the mezuzah on the doorpost.
My parents are watching an Israeli movie in the living room, subtitles on for my dad’s benefit. Adina and I speak Hebrew with our mother, who was born in Tel Aviv and lived there until right after her mandatory military service. We call her Ima and our father Aba. He’s American and not quite fluent in Hebrew, though he’s been taking classes for years.
“Yom huledet sameach.” Ima wishes me a happy birthday as Aba pauses the movie. Her head jerks upward. Twice. Three times.
It doesn’t look too unusual unless it happens thirty or forty times a day.
Huntington’s makes her body do things she can’t control, makes her temper unpredictable, makes her forget names and conversations. I never know if something I say will make her furious, or if she’ll remember tomorrow where I went tonight. Or if one day she’ll forget my birthday altogether.
“Todah,” I thank her.
“Eich ha’yah?” Aba asks in stilted Hebrew.
“About as fun as skating with a few dozen small children can be.”
He smiles, and then an alarm on his phone beeps. “Time for kinuach,” he says.
A while ago Ima insisted we call her pill regimen “dessert” so she wouldn’t sound as sick. There’s no cure for Huntington’s, but the meds reduce her symptoms. Mood stabilizers and antidepressants, plus antinausea pills to combat the side effects.
I was fourteen when Ima was diagnosed. She’d been acting strangely for a while, dropping cups and plates, forgetting conversations we’d had. Yelling at us when she’d only ever been gentle. Huntington’s is a genetic disease that slowly kills the brain’s neurons. There’s no way to tell when symptoms will appear or how fast the disease will progress, though usually people start showing signs in their forties or fifties. Sometimes before then. People gradually lose the ability to walk and talk and swallow food. In the final stages of the disease, they’re confined to beds in assisted living facilities. Time between onset and death is ten to thirty years, and there’s no cure.
Though her symptoms aren’t grave now, the reality that this disease is fatal has only started to sink in over the past few years.
I leave my parents to their movie and head upstairs to my room. When I flick on the lights, I jump: my sister’s standing in the middle of the room like she’s haunting the place.
“You scared me,” I accuse, and she rolls her shoulders in a shrug that suggests she’s not actually sorry. I swipe an orange plastic case off my desk and shove in the night guard my dentist makes me wear for bruxism: grinding my teeth too much, especially while sleeping. It’s caused by stress, but my hectic schedule will have been worth it when I’m accepted to Johns Hopkins.
“I wanted to talk to you.”
She hasn’t been in my room in a while. With the light on, she scrutinizes the walls, the photo collages of me and Lindsay and a few other friends. My shelves overflow with medical books and Jewish texts. A printout of next week’s Torah portion, Ha’azinu, on my desk so I can study it before services. Then there are the academic achievement awards and middle school Science Olympiad medals. Framed above my desk is my most prized possession: a ticket from a Nirvana show my dad went to when he was my age.
I’m not sure what’s on Adina’s walls. I haven’t been in her room in a while either.
“Fine. Talk.”
Adi regards my bed as though she doesn’t know if she should sit or not. Pushing some of her hair off her shoulder, she settles for standing, crossing one ankle behind the other. We’re fraternal twins, “te’omot” in Hebrew. It’s similar to the Hebrew word for coordination, which when it comes to us is wildly inaccurate. We share some features: same long thin nose, same curves. Adina’s alway
s been more comfortable in dresses that accentuate the lines of her body, while I prefer loose clothes that disguise mine. We have the same thick almost-black hair, though mine is coarse and hers is like silk. I chopped it into a pixie when I started high school, but Adina keeps hers long, curls twisting halfway down her back. Even if I wanted to look like her, I never will.
Her dark eyes are hard on mine. She has Ima’s eyes, while mine are light blue like Aba’s. After a couple agonizing minutes of silence, she says, “I don’t want to take the test tomorrow.”
“Are you fucking kidding me?” The night guard goops up my words. Makes them less sharp than I want them to be.
Not knowing has to be worse than a positive result. We can prepare for the worst. We can’t prepare for an unknown. Not taking the test means even more years spent wondering, wondering, wondering if we’re going to end up like Ima. If we take it, there’s a chance for relief. To know that we’ve been spared.
As little as we talk these days, I’m too scared to do it alone. This fate binds us as sisters, as twins, though the rest of our lives have spun in opposite directions. It’s something we have to do together—or not at all.
“I keep thinking about how much happier I’d be if I didn’t know.” Her arms hug her chest. Adina’s prone to big, dramatic emotions. If she thinks she’s played poorly in a show, she whines and slams doors, sometimes even cries. I’m thirty-six minutes older than she is, but the gap between us could span an entire geologic era. “I’m not ready.”
I pull a pair of pajama pants from a dresser drawer. Slam it shut. “Adina.” I snarl her name as I whirl around to face her. “We’ve had four years.”
“I want to keep focusing on viola. If I don’t take it, I won’t have to worry as much about the future, and—”
“You know why you have to take it with me,” I interrupt her. “You owe me.”
The heaviness of her debt sags between us as we stare each other down. She knows what she did. Knows the balance between us is permanently skewed. And that means I get what I want now.
Adina’s jaw quivers. “I was hoping for a little empathy. But clearly I went to the wrong place.”
“So you’re done in here?” I ask as I start unbuttoning my jeans. Her puppy eyes won’t win her any pity.
“I’m done,” she says crisply. I shut the door behind her. There’s nothing left to talk about. There’s only tomorrow.
Adina glances away as a nurse jabs needles into our veins, but I watch the glass vials fill with red. I’ve never been squeamish. It’ll make me an excellent surgeon.
I cling to the statistics. There’s a fifty percent chance each of us will test positive. A positive result means someone will develop Huntington’s. Fifty percent isn’t the worst probability, I try to convince myself. A fifty percent chance of rain in Seattle doesn’t always mean a downpour; sometimes it means gloom and gray skies. I pray for gloom and gray skies.
In three weeks, we’ll know if neither or both or one of us is going to die the same way our mother will.
Three
Adina
A FAMILY OF THREE LINGERS in the strings section of Muse and Music, where I work part-time. The parents murmur as they scan price tags. Their young daughter touches all the most expensive instruments.
“You look like you could use some help,” I say.
The parents look relieved. “Hailey’s always been musical,” the mother says, placing a hand on her daughter’s shoulder. “She’s nine now, and we’d like to sign her up for music classes.”
“We told her she could pick any instrument,” the father says, “but I’m afraid neither of us knows how to play anything, so we’re a bit lost.”
“I want to play the violin.” Hailey points to a Windsor. “I like this one.”
“What do you know about this?” the mother asks me.
“Windsor is good quality. Solid choice for a beginner. But,” I say, bending down to Hailey’s level so we’re eye to eye, “everyone plays the violin. You’re going to be one of twenty violins in your school orchestra, I guarantee it.” Her hand drops from the Windsor. “Do you really want to be like everyone else, or do you want to be unique?”
She shakes her head. I have said the magic words. “I don’t want to be like everyone else.”
I grin like I am about to tell her a secret. “How about the viola?”
I show them a Stentor, a Mendini, a Cecilio. The makers’ Italian names waterfall off my tongue. Then I go over rental rates. “If she’s planning on playing it long-term—and you said she’s very musical—purchasing the viola outright will cost less than an entire year of renting.”
Hailey likely has a long life ahead of her to play viola. To become a soloist, even, if she truly devotes herself to the instrument. If I test positive, if I develop the disease one day, when will I have to stop playing? That’s what I haven’t been able to get out of my head since the blood draw a few days ago.
“You’ve made our decision very easy,” the father says.
I make commission on every sale, and I make a lot of sales.
The deal I struck with my parents when I turned sixteen was that if I wanted to continue taking private lessons and playing in the youth symphony, I had to pay half. Ima encouraged my music, but Aba wanted me to experience the “real world,” which did not revolve around long-dead nineteenth-century composers. But I’ve always been more comfortable with long-dead composers and string instruments than with anyone with a beating heart.
My manager, Oscar, swoops over once the family leaves. “Can you work your magic on that guy over in guitars? He’s been here for more than an hour.”
The guy is the stereotype of a moody acoustic guitarist. He hunches on a stool with an Ibanez in his lap, strumming a Bob Dylan song, shaggy black hair falling in his face.
“You know,” I say as I approach, “if you own it, you can play it any time you want.”
He plucks another few chords. “I’ve been in here awhile, huh?”
“I love Dylan.” I do not, but music tastes are sacred. There is no more immediate connection you can make with someone than learning they like the same composer, the same band, the same vocalist as you. “And that’s a great instrument.”
When he finally glances up at me, his eyes rove over my body. Up. Down. Up. From my hips to my chest to my reddest red lipstick, a shade called Siren. Men have been looking at me in ways they probably shouldn’t for a long time. Seniors leered at me in the halls even when I was a lowly freshman. I developed early, wore underwire when all the other girls were still in training bras, and I have never looked my age. The attention typically makes me feel important. Wanted. Like I can be a star onstage instead of an invisible piece of an orchestra. Usually, I adore being looked at, but today it irks me. Arjun’s rejection and the impending test results have stripped some of my confidence.
“Can’t afford it now, unfortunately.” He sets it back on the wall. “Do you play . . . Adina?” His gaze lingers on the name tag above my breast. Today I wish I could paste it to my forehead.
“I play viola.”
“Don’t tell me you’re into classical music.” He says classical music the way someone might say using pliers to pull off your fingernails one by one.
That sets me off, makes me wish I’d told him how overrated I find Dylan. He has probably never listened to a classical piece in its entirety. He probably equates it to elevator music. Music without a soul or a heartbeat.
“I am into classical music, in fact,” I say. “It’s been around for more than a thousand years, its composers have more name recognition than whatever ‘indie’ music you’re listening to right now, and symphonies sell out millions of performances a year. So go ahead, tell me classical music is tedious or boring or inferior.”
He shrugs, jamming his hands into his pockets. “I gotta go,” he mumbles, pocketing a few fifty-cent guitar picks as he leaves. If he dares come back, I will report him.
Music snobs who hate classical mus
ic mystify me. Classical music is everything to me, and since viola is what I’ve devoted my life to, I don’t tolerate critics. Without viola, I’m not sure who I’d be.
The nearer doomsday draws, the harder it is to keep my nerves inside. My tights develop so many holes, I have to buy new ones. While Tovah has a whole group of close friends, I only have my mother to confide in. On a day off from work, I visit Ima’s fifth-grade classroom. I need some kind of reassurance from her that I am strong enough to handle this.
My first fourteen years carried no tragedies, but Tovah and I still consoled each other during rough times, like when Papa, Aba’s father, passed away. We only saw him a couple times a year, but I couldn’t wrap my mind around him being suddenly gone. Tovah, sad but logical, told me to focus on my good memories of him, hugged me when I cried. Later, I was there for her first heartbreak: when she lost in the final round of the regional Science Olympiad in seventh grade. Silver was a prettier color than gold anyway, I said to her. The other day in her room, I noticed the medal still hung on her wall.
Tovah had no kind words for me then. I should have expected as much. She claimed, as always, that I am the one to blame, but she is the reason we no longer share secrets or inside jokes.
At her desk, Ima slashes assignments with a red pen, her hand trembling. Errant scribbles mark up the margins. She probably has only a couple years left to work, and she loves her classroom more than anything. I help my mother out at least once a week, but I doubt my sister has ever set foot in here.
“How were your students today?” I ask Ima in Hebrew.
“Today was movie Monday.” Words used to fly from her lips at warp speed. Now, even in her native language, they’re slow, plotted, like her mouth is full of honey. “We started Singin’ in the Rain.” Each Saturday after sundown, Ima and I watch a classic film together; we watch Singin’ in the Rain at least twice a year. Classical music and classic films: I am an anachronism. “Did you know I wanted to be a tap dancer when I saw it as a kid in Israel? I taped shekels to my shoes and practiced in the street.”
You'll Miss Me When I'm Gone Page 2
