“She lost her balance,” Aba explains. He, Tovah, and I are in the waiting room. Ima is sleeping; they pumped her body full of drugs that will lessen the pain. She doesn’t have a concussion, thank God, and the CAT scan didn’t show any bleeding in her brain. Still, the doctors wanted to keep her overnight for observation, and we’ll have to monitor her closely for the next couple weeks.
My eyes burn, threatening to spill over. Tovah stares out the windows at the slowly brightening sky. None of us says much. We try to sleep as best we can, but I cannot relax with the terrible smell of hospital and a coughing man in the corner and a quietly weeping family across the room. The waiting room chair digs grooves in my spine and neck. My performance clothes are stiff, and Ima’s too-tight heels are numbing my toes. I haven’t brushed my teeth and my throat is dry and my lips are raw from rubbing off my lipstick.
Around seven in the morning of a brand-new year, a doctor tells us we can see her, but she’s drowsy and “might still be a little out of it.” When I get to my feet, I almost lose my balance, forgetting I’m still in heels. The doctor guides us down the hall, past rooms and rooms of sick, sick people.
A bandage is wrapped around Ima’s head and a needle is threaded through the veins in the crook of her elbow. I am sure Tovah could explain what all this is, but it is easier not to know. My mother is broken: that is what is happening.
“Ima,” I croak. I squeeze her other hand, the one without a needle in it. Her skin is tissue paper, her veins the brightest blue.
“This is a sign.” Aba strokes her hair. “You can’t keep working if this continues to happen. It isn’t safe for you, Simcha.”
And she agrees. My strong mother agrees with my father telling her what to do for maybe the first time. “I think you’re right,” she says. “I . . . don’t have the focus. I want to be able . . . to give it my full attention. . . .”
“Shh,” Aba says. “Don’t talk too much right now. Save your energy.”
A grapefruit-size lump forms in my throat, but I can’t swallow it away. Looking at my mother, I am slammed with a tidal wave of fear. This is going to be me.
Slipping in the bathroom.
Banging my head on a bathtub.
Wrapped in a hospital bedsheet.
Dying.
Dying.
Dying.
I draw my hand away from Ima’s. She wasn’t holding on very tightly anyway. I press it against my chest, like it’ll help me breathe easier, but it doesn’t. This is my life. In twenty years or sixteen or twelve or eight or five. The timeline is indefinite, but the result is inevitable.
“I’ll be right—” The last word gets stuck behind my teeth. I push out of the hospital room, but it’s claustrophobic in the lobby, too. That hospital smell chokes me. I’m getting sicker breathing it in.
Elevator. I punch the button once, twice, three times, but then someone wheels an oxygen tank next to me and I can’t get inside that metal box with actual living death. Stairs. Click, click, clomp go my mother’s heels. I trip, twisting my ankle. Shit. I land on concrete, grabbing my ankle, massaging it with my fingertips. Have to keep going. Have to get out of here.
“Honey, are you okay?” a nurse at the main station asks as I limp through the first-floor lobby, but I don’t slow down to answer.
Finally, I make it outside. The air out here is morning-cold but fresh, and I get a few more blocks away from the hospital before I tear off my shoes and the sidewalk chews through my pantyhose.
Breathe. I’m breathing now.
My ankle will turn violet tomorrow.
I stop on a residential neighborhood street, dropping my hands to my knees. Has it really been only twelve hours since the show? In the distance, the hospital becomes a rectangle, then a dot. The sun is peeking up behind the trees, a sign that the world has continued to spin all the way into a new year. A year Ima has begun with staples in her head and needles in her veins.
It will only get worse from here, and that is something I am certain I cannot live with.
Shivering in my dress and ruined pantyhose, I start walking again, sidewalk square by sidewalk square, block by block. One by one I yank the remaining pins from my hair, waves stretching onto my shoulders and down my back. I left my clutch back at the hospital, but my phone’s surely dead now anyway. Useless. Don’t need it.
Slowly, I allow myself back into the dark place in the depths of my mind, unlocking what I hid there. Only today it doesn’t sound quite as dark. It sounds like relief. Like a solution.
Almost like a cure.
Robe-wrapped people open front doors to collect their morning papers and stare at the strange girl in a green dress limping purposefully down the block. I smile at them, wishing I could tell them I am okay. They don’t need to worry about me.
While I don’t know when my symptoms will begin, I cannot let the disease have power over me even now. I cannot mope through the remaining years of my life, waiting to become my mother. The waiting and the worrying will drive me mad. I’m sure of it.
Everything I’ve wanted—getting into conservatory, becoming a soloist, traveling to places I’ve only visited in my mind, a real relationship with Arjun, even growing close to my stranger-sister again—is still possible, even with my shortened timeline. It isn’t the trajectory I imagined weeks ago, months ago, years ago, but it is the best option I have. The only option, really. If I plan correctly, if my determination becomes an obsession, then I can fit everything in.
The alternative would be to allow the disease to gnaw away everything that makes me Adina. I am scared of HD; I’m not too proud to admit that. I am scared of what it will do to me. How it will warp me. Aba and Tovah will suffer from it too. They will watch Ima die, and then they will watch me.
A car honks and a dog barks and I make a vow to myself. The best solution would be to spare everyone the additional agony and do it on my terms: quickly, painlessly, peacefully, once I’ve accomplished everything I have ever dreamed of. So as soon as my symptoms appear, that is what I will do.
In the meantime, I can have my beautiful life.
And then, when it stops being beautiful, I will end it.
Twenty
Tovah
I’M TOO OLD FOR BALLOON animals, but that doesn’t stop me from asking the clown at our school carnival to make me a DNA double helix.
“A what?” he asks.
“A double helix. It looks like . . .” I slice my hand through the air to mimic the spiral shape, and the clown lifts his red-painted eyebrows in confusion. “Never mind, here.” I show him an image on my phone, and after several minutes of stretching and twisting and tying, he presents me with my slightly misshapen balloon double helix.
Joke’s on me, though, because now I have to carry it around the rest of the night.
The January carnival is a welcome distraction from Ima’s deteriorating health. She was released from the hospital when we went back to school earlier this week, and while her head wound will heal, she’s not returning to work.
I wait for Lindsay, who’s at the ring toss booth next to me. We had to rip tickets for a while until a couple freshmen took over our shifts. In exchange, we got handfuls of free tokens. Being on student council means half my time spent at any event is not devoted to enjoying it. I’ve gone to Homecoming and Tolo all four years of high school not to dance, but to serve refreshments and check coats.
“Tovah? Tovah Siegel?” A guy in the ring toss line is calling my name. He smiles, revealing clear braces.
“Hi?”
“I’m Connor,” he says. “You’re, uh, you’re Adina’s sister, right?”
“Her twin, yeah. We’re fraternal,” I feel compelled to add, and he nods like of course this makes sense now.
“I’m in orchestra with her,” he says. “I play the double bass.”
“Okay . . .”
His cheeks turn beet. “What’s her deal? Like, is she seeing anyone?”
“I don’t think so.”
&nb
sp; “Cool. Thanks,” he says before he moves up in the line.
There are probably a dozen lust-sick Connors roaming the school at any given time. Adina knows exactly how guys like Connor, guys like that waiter in Canada, look at her, and she loves it. She hasn’t mentioned any specific guys to me since we were preparing for our b’not mitzvah and we both had crushes on David Rosenberg, the first boy our age to grow facial hair. If she returns the affections of any of the multiple guys who ogle her, she keeps it a secret.
Lindsay wags a stuffed tiger prize in my face. “Rawr,” she says. “What next? I wouldn’t mind throwing a pie at Mr. Bianchi.” She eyes the Pie the Teacher booth, which has been tonight’s most popular game.
“Food?” I say, my mind still on Connor and my sister and how that pairing, I’m sure, will never happen. He’s too uncertain of himself.
She makes the tiger nod. “Sure.”
I follow her to the concessions, dragging my double helix behind me.
“Are you doing okay?” Lindsay asks as we get in line for cotton candy. “With . . . everything?”
I can sense her discomfort with the question. She’s not quite making eye contact, and her mouth is bent in a pity smile. A for effort.
“Honestly, it’s been rough lately,” I admit. “My mom had a bad fall over winter break, and she’s going to have to retire from her job earlier that we thought she would.”
“That’s awful.”
“And my sister’s . . .” I trail off, unsure how to explain what’s happening with Adina. We’ve barely talked since my deferral. Before I’ve begun to formulate a response, Lindsay waves her tiger at someone behind me. Troy descends on us, carrying a stack of three cakes.
“I’m really good at the cake walk,” he explains.
Lindsay nudges his shoulder, and he clambers to keep the cake on top from falling. “You can’t be good at the cake walk.”
“ ’Course you can. It’s all a matter of statistics.” Troy lifts the plastic off the top cake, and Lindsay dips her index finger into the chocolate frosting.
“I take it back,” she says, licking it off. “You are great at the cake walk.”
“Hey, Tovah,” Troy says, as though just realizing I’m here too. “Zack’s working on something in the art room, but he said he’d stop by later.”
“Oh. Okay. That’s great. I mean, he can do what he wants.”
I expect them to tease me about my poorly hidden feelings for Zack, but they’re no longer listening. Lindsay flicks the brim of Troy’s Mariners baseball cap. “You don’t have to wear this all the time. No one cares that you’re prematurely balding.”
“I care,” he says as she steals the hat and puts it on her head. “Thief!” He places the cakes on the floor, but before he can snatch his hat back, Lindsay darts out of the way, running a circle around me. Turning me into an inanimate object.
Troy catches Lindsay. Starts tickling her. She howls with laughter that grates against my eardrums.
“Do you guys even care that I’m here?”
It bursts out of me. The adoring couple freezes and turns around.
“What are you talking about?” Lindsay says, brows slashed with concern. “Of course I care.”
I shake my head quickly. “Whatever. It’s fine.”
“It’s obviously not fine. What’s going on? What are you talking about?
“I guess what I’m starting to realize is you’re not really here for me when things are hard. Even though I was there for you when you—” I break off because Lindsay’s eyes are the size of petri dishes and it’s clear her pregnancy scare is something Troy still doesn’t know about. It’s not my secret to tell.
“You’ve honestly given me no indication anything is weird between us. You hardly ever talk about Adina or about Huntington’s. How am I supposed to know it’s bothering you?”
“You could ask.”
“Did I not ask you how things are going three minutes ago?”
I twist my shoe into the gym floor. “No, you did. Forget I said anything.” Then I mutter: “Really, pat yourself on the back for awkwardly asking me how things are going one fucking time in the past several months.”
“What?” Lindsay steps closer to me, though with her height, she’s hardly intimidating. “I cannot believe you’re calling me out like this. In public.”
Troy coughs. “Should I, uh, go?”
“No,” Lindsay says, and she and I remain still, gazes locked, until a fourth voice breaks through.
“Everything okay?” It’s Zack, standing a couple feet away.
I step out of line, and Lindsay gestures for Troy to stay in line with her. That’s one thing she’s good at: leaving me alone.
“How much of that did you hear?” I ask Zack, embarrassed by my outburst. I don’t have outbursts. I’m the calm, collected twin.
He glances at Lindsay and Troy as though making sure they’re out of earshot. “Enough to know you said what’s on my mind a lot of the time.”
I pump my fist half-heartedly. “Bonus friend revolt.”
Zack cups my shoulder with one hand and gently steers me away from concessions. “What is that thing?”
“Oh.” I hold out my balloon “animal.” “I asked the clown to make me a DNA double helix.”
“Amazing,” he says, but he’s looking at me, not the balloon. “Have you made the rounds?”
“A few times. You can only toss so many rings onto bowling pins.”
He holds up a key ring, dangles it from one finger. “Then you won’t mind if we go somewhere else? I’ve got special after-hours art room privileges, and I want to show you what I’m working on.”
I can’t follow him out of the gym fast enough.
The art room has low ceilings and long gray tables and a kiln toward the back. Paintings and sketches and engravings hang from every wall space. I’ve haven’t been in here since Introduction to Drawing freshman year.
“This is my happy place,” Zack says, and tonight it’s mine, too. When he’s in a room with me, he completely fills the space, giving it a new kind of energy. His hair is spilling into his eyes, and I find myself wondering what it would feel like to touch. If it would be soft or coarse. If he’d like it if I ran my hands through it.
“I like it.”
A canvas board and paint palette wait at the table where Zack must have been working. Since all the chairs are stacked in the back of the room, I hop onto the table, my legs dangling off it.
Next to me, Zack leans a hip against the table. “We don’t have to talk about Lindsay and Troy.”
“I’d prefer not to.”
“You doing okay about Johns Hopkins?”
“From one sore subject to another.”
He turns his mouth into a guilty scrunch. “Sorry, I didn’t mean—”
“No, it’s okay. Thanks for asking. I’m managing. I applied to other schools over break and barely made the deadlines. Obviously I’m still hoping I get in. But I guess I could really end up . . . anywhere.” It’s impossible, though, to imagine myself anywhere except Baltimore. I release the tension in my jaw. “Let’s talk about something else. Let’s talk about this.” I gesture to the canvas, which is half-covered with price tags and candy wrappers and even a math test marked with a fat red C-plus—all objects I’m sure Zack has found.
“Before you ask,” he says, “it actually does mean something.”
“Yeah?”
He plants one palm on the table, right next to my thigh. His thumb brushes against my jeans. Then his eyes trap mine and he says in a serious voice, “It’s about passing AP Studio Art.”
“Ha, ha.” I examine it. “It’s looking a little . . . sparse.”
“You wanna add anything?”
“Wouldn’t that be cheating?”
Zack sweeps his thumb back and forth across my outer thigh. If this single finger scorches my entire body, I can only imagine both his hands would explode me. “I won’t tell.”
I consider the colors
, then dip the paintbrush into cobalt and streak it onto the canvas, forming the Hebrew letters chet and yud.
“I’m not very good at this.”
“I like it, Tov,” he says.
He moves closer so that his entire right hip is pressed against my leg. I swallow hard. Forget exploding: I might be made of sparks. There’s something in me that some days is stronger than the guilt, and it’s this: the flippy feeling I get whenever I’m around Zack. I could get addicted to that flippy feeling. Overdose on it.
“Of course you’d paint something in Hebrew.”
“Do you know what it means? I mean, I know you’re not as Jewish as I am, but . . .”
He squints at it. “Ah, fuck. They’re gonna un–bar mitzvah me.”
“Maybe I shouldn’t tell you.”
“Why, is it dirty?”
“No!” I swipe the brush across his cheek—to punish him? Flirt with him? Both?—and pull back, covering my mouth with my other hand to hide my laughter. “I am,” I say through my giggles, “so sorry.”
He’s grinning too. “You are not. But it’s fine, because”—he dips his middle finger into violet, then dabs it onto my cheek—“I’m going to get you back.”
“You’ve started a war, you know that?” I ask, smearing canary yellow on his chin.
Soon there’s emerald on the tip of my nose. Persimmon along his eyebrow. He drags garnet red along my collarbone, and the combination of his touch and the coldness of the paint makes me inhale deeply, closing my eyes.
When I open them, he’s staring at me, daring me to make the next move. This time I paint him with my mouth, and he cups my face with rainbow fingers and kisses me back.
My body’s electrified: neurotransmitters shooting off in every direction, oxytocin—the hormone associated with social bonding—levels rising. That’s all science I can understand, but what’s new to me is the labored sound of his breathing, the sounds he makes deep in his throat. I’m doing that to him. I’m making that happen.
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