“It’s what I believe,” she says softly. “How am I a sheep if this is what I truly believe in?”
I set the plate in the cupboard too loudly. “That’s what I don’t understand. How you can still believe after what God did to Ima?”
“God didn’t do anything to Ima. That’s what you don’t understand.”
I wonder how she can be so sure when she barely spends time with our mother. “I’m sorry I can’t remember all the minutiae of this religion.”
“Our religion,” Tovah corrects, handing me another bowl. “Don’t you care about where Ima came from?”
“Yes.” I’m not sure how to explain to her that to me, being half Israeli and being Jewish are two very different things. Ima’s pre-America life is a secret I want to uncover. It is personal, belongs only to her. This religion, with all its rules and regulations, belongs to too many people.
When Tovah passes me the next plate, her hands are too slippery and I can’t grasp it, and it crashes to the floor. We stare at it on the ground, a mess of soap and shards. I’m not sure which of us dropped it.
Neither of us says it, but I am sure we are both thinking it: this is how it started for Ima.
“Perfect,” I say. “That was a gift from Aba’s parents at their wedding.”
“Then you shouldn’t have broken it.”
“It slipped. It wasn’t either of our faults.” I run my tongue along my teeth, trying to calm down. “Let’s just throw it away. They probably won’t even notice. We have so many plates.”
Tovah gets out a broom and dustpan. I decide I am done in the kitchen with her, so I go into the dining room to finish cleaning up. The thin ivory candles in the middle of the table are a third their original height. Jews are not to extinguish them; we are supposed to let them burn on their own instead. That’s what I have been taught.
Tonight I lean over and blow them out.
Six
Tovah
I TRY TO TAKE A deep breath, but I can’t fully fill my lungs. The air in the clinic is thin, sharp with disinfectant. One day I’ll work in a place like this—unless my test comes back positive. Then maybe I won’t get a chance to. I suppose I’ll spend most of my life here either way, as a surgeon or as a patient. Will it always feel like it’s suffocating me?
Aba rubs my back while we wait. “Hakol yihyeh b’seder,” he says, trying to reassure me. “Whatever happens, we’re going to figure it out together. Okay, Tov?”
When we got to the clinic, they put us in separate rooms. Said it was customary to give out results one by one so each person had ample time to process on their own first. Aba stayed with me, and Ima went down the hall with Adina.
I balance my elbows on my knees, my heart pounding so loudly I’m certain Aba can hear it. He always brags to his friends that I’m going to be a surgeon. “One Siegel will finally become a doctor,” he’ll say, because he failed to finish a PhD program in computer science. Genetics might seem like an obvious career choice for me, but I want to fix people who can be fixed. Who can get better. This right here is all too claustrophobic.
Aba tries to distract me with Nirvana trivia, something he used to do when I was little. I had such a sharp memory that he got a kick out of quizzing me on album track listings despite Ima’s complaints that some of the songs weren’t appropriate for a kid. Nirvana’s music is raw and unapologetic, like someone turned Cobain’s brain inside out and the lyrics were the thoughts he couldn’t tell anyone else. Back when I had more free time, Aba and I spent hours listening to vinyl albums and watching documentaries and old concert footage. I couldn’t believe he’d seen them in person, both because I couldn’t imagine my L.L. Bean–clad father in a mosh pit and Nirvana seemed more mythological to me than tangible. Adina may have gotten a pricey viola for her bat mitzvah, but my gift was so much better: the ticket to that show Aba went to, the one still hanging above my desk. A connection to my dad and the music that Adina would never understand. Something entirely mine.
“Original band name?” Aba says now.
“Too easy. Skid Row.”
“What are the only two songs Cobain doesn’t have the sole writing credit on?”
“ ‘Smells Like Teen Spirit’ and . . . ‘Heart-Shaped Box’?”
“First one’s right. The second’s ‘Scentless Apprentice.’ ”
“Right. Right. I knew that.” My leg is jiggling. I hate sitting still like this.
Once music was something Adina and I shared too: finding a song we both liked, staying up all night choreographing a dance that we promised to perform at the school talent show, though we were always too shy to actually follow through. Every so often one of us would strike a pose from the dance, and the other would burst into laughter. Once music brought us together, and now it’s another thing dividing us.
Our fight on Yom Kippur is still fresh. Adina’s not the first person to question how I reconcile faith with science. History is filled with scientists who were also people of faith: Ada Yonath, an Israeli woman who won a Nobel Prize for chemistry; Max Born, who helped develop quantum mechanics; and little-known theoretical physicist Albert Einstein.
God did not cause Ima’s illness. God has limits, humans have free will, and the natural world isn’t ruled by a higher power. After Ima was diagnosed, I realized blaming God would only cause me anguish. I had the power to decide how to confront that tragedy. I could turn it into something good—and I did, with my zeal for Johns Hopkins, my 4.0, my two-page single-spaced résumé. If I test positive, then I must be meant to accomplish something great in my shortened life.
Someone knocks on the door, and I spring to my feet.
Dr. Simon, the neurologist, and Maureen, the genetic counselor, enter the room together. Maureen had Adi and me come up with a plan for testing negative and a plan for testing positive. She had to know we weren’t at risk of harming ourselves. If I tested positive, I’d go to counseling every week and join a support group. I’d do everything doctors told me to do, appointments and supplements and experimental meds. If I tested negative, Maureen said it was perfectly natural to experience guilt. I was prepared to deal with that, too.
“Tovah. Matt,” Maureen says to my father and me. “You don’t have to stand up, unless you’re more comfortable that way.”
“Oh.” I sit back down. Cross and uncross my legs. Cross them again.
Dr. Simon and Maureen take seats across from us. “How have you been doing?” Dr. Simon asks, tucking a dark curl behind her ear.
“Longest three weeks of my life,” I say with a weak smile.
“I’ve heard that one before. I’m sorry. I wish this process were a bit speedier.”
My smile turns into something more like a grimace, a hard line across my face. I wonder what it was like when Aba sat in a room like this with Ima. If it was a tragedy right away, or a relief to finally be able to name her symptoms.
“Do you want us to cut right to the chase?” Dr. Simon asks.
“Yes. Please.” My heart hammers in my throat. I have my two plans. Whatever happens, I can deal with it.
I hope.
The moments before the doctor’s next sentence span eons. Glaciers melt and entire species go extinct. I’m certain she’ll tell me what I’ve only let myself obsess about through research and in my nightmares.
“You will not develop Huntington’s disease. You tested negative.”
Seven
Adina
“ADINA, I’M SO SORRY. . . . YOU tested positive.”
The room tilts. Sunsets and mountaintops burst from their frames and slide off the walls. Computers crash to the floor and lightbulbs explode and everything lands in a heap of broken pieces.
I blink, and the room repairs itself.
“Adina?”
My mother begins to sob, pianissimo at first. Her arms wrap around me, but I cannot get mine to do anything. Positive. The word has turned me to cement.
A masochistic laugh bubbles out of me. It’s a quick noise, a ha! t
hat almost sounds like I’m choking. Because it is funny, almost, that “positive” usually means something good.
“Adina,” Dr. Simon says again, “do you understand what that means?”
Slowly I nod. Somehow I find my voice. “I—I have HD.”
“You don’t have it yet,” Dr. Simon is quick to correct. “You won’t have symptoms for a long, long time. You’re only eighteen. You can still have a long, full, normal life ahead of you.”
Only eighteen. I am as young as I often fear I am. I shake that thought away.
“Not exactly normal.” The laugh returns. This time it sounds like a bark.
“We’ll do all we can for you to make it as normal as possible,” Maureen says.
Ima hugs me tighter. “Adi, I am so sorry.”
It takes several more minutes for me to attach any real meaning to the words spilling out of the doctor’s mouth. The room is thick with those words, consonants and vowels stacked to the ceiling. Entire sentences collapse on top of me.
You can still live a normal life.
Many people do.
You’re so young.
Machala arura—the damn disease belongs to me now, too.
“We’ll give you some time to process this as a family,” Dr. Simon says.
As a family—oh God, how is Tovah handling this? My frustrations toward my sister vanish for a moment. If she tested positive too, she will surely develop some coping mechanism so it won’t wreck her own meticulously planned future, and she’ll share it with me and we’ll get through it together the way she promised all those years ago. She broke that promise, but she can still make it up to me.
But when Tovah enters the room with Aba, her eyes are not red, and she hasn’t been crying. Her shoulders are straight, relaxed, and she looks entirely unchanged by her result.
“You tested negative,” I say, and a brief nod from her confirms it.
Opposite results.
It takes a split second for the reality to dawn on her. “Oh my God, Adi.” My nickname sounds strange on her tongue. She hasn’t used it in a while. “I can’t believe it. Oh—oh my God.” Her voice is soft, crackly. My usually articulate sister has no intelligent words.
Tovah sinks into the chair next to mine, bites her lip as she tries to think of something else to say. She is the one who is going to live a long and healthy and normal life. I am the one doomed like Ima, and perhaps it fits, since Ima and I are so close, for she and I to be eternally bonded in this way.
Tovah shifts toward me, apparently deciding to attempt a hug. It has been years since we touched like this, years since I have hugged the sister I spent nine months with in utero. She says my name again, this time into my hair, as I stiffen at the shock of her arms around me.
When she pulls back, pity has knit her brows together, and her eyes won’t leave mine. I wonder if that’s how people will look at me from now on, with sad eyes that say I feel so bad for you and at the same time I’m glad what happened to you didn’t happen to me.
The conversation ping-pongs between our parents.
Ima: We’re here for you.
Aba: We’ll get through this.
Ima: Can we get you anything?
Aba: We can call the doctors back in. Or we can talk more about this at home. Or we can wait to talk about it. Do you want to talk to Rabbi Levine?
Ima: Rabbi Levine would be more than happy to sit down with you.
Aba: We can do whatever you want.
Tovah (whispered): Adi. Are you okay?
Tovah: Adina. Say something.
Aba: Maybe we shouldn’t have let them do this so young.
Ima: They aren’t young. They’re adults. They deserve to know.
Aba: We thought about this possibility, of course, but we never thought . . .
Tovah: Please.
Too many people are talking. They are sucking the last of the air out of the room, leaving none for me. For once in my life, all I want is silence.
I never wanted to know.
After Ima’s diagnosis, Tovah and I talked about HD occasionally, but whenever she tried to convince me to take the test with her, I told her no. Over and over and over. Once we started high school, we pursued our passions with renewed vigor. I started private lessons and Tovah joined student council and track and buried herself under mountains of homework. Distance grew between us, of course, but that was natural. We were busy.
Spring of sophomore year, Tovah applied to a half-dozen summer programs, including a study abroad with a STEM focus that would last an entire year. Her Johns Hopkins application had to stand out, which apparently meant abandoning our family. I wondered why she couldn’t start a charity or invent something, the way people who get into prestigious schools always seem to do. This was what she wanted, though: to spend several weeks or months or an entire year away from our family. Away from me. When I asked her to stay, I only sounded selfish.
One evening when she was out for a run, her bedroom door open, her computer beckoned me closer. Her applications weren’t difficult to find. The essays talked about how science helped her make sense of the world. What I couldn’t get out of my head was that no one could make sense of what had happened to us.
She was the only one who knew what it was like to have a mother suffering from something you might suffer from too, and I had to keep her here any way possible—even if it made her angry. Anger, I could deal with. A missing sister, I could not. And she couldn’t leave if she never actually sent in her applications.
Deleting the applications was the easy part. My engineer father ensured we knew our way around a computer better than our naturally tech-savvy peers. I erased every version she’d saved, made sure she couldn’t recover them.
The hard part was what came after: the yelling and the slammed doors and the disapproving looks from my parents, especially Ima. Aba threatened to take away my viola, but I cried so hard he eventually reneged. I was grounded for an entire month.
Tovah retaliated. The night before my audition for the youth symphony, she shredded my sheet music. But it didn’t matter—of course I’d memorized my pieces and easily made it in. Then it became war and we became children: locking the bathroom when we knew the other needed it, taking a long time to get ready and making us both late for school, eating all the leftovers when Ima made shakshuka.
A couple months after I deleted everything, she barged into my room and, in a venomous whisper, she said, “You’re taking the test with me when we turn eighteen.”
Quickly I shut my laptop, where I’d been watching old videos of Arjun’s performances with the New Delhi symphony. “No. I’m not.”
“You want me to keep speaking to you? Do this with me, and I will. I can’t promise that we’ll be close again, but one day I’m sure I’ll forgive you. But if you don’t take the test, Adina, you are dead to me.”
“You can’t be serious.”
But she was. Then came the three words that would characterize our relationship from that point forward: “You owe me.”
Sister guilt runs deep. I gave in, and for the next two years we stayed out of each other’s way. We were polite but brusque. No more late-night talks or inside jokes or entire conversations communicated only with our eyes. By trying to keep her here, I’d pushed her further away.
I have been holding out for that one day when she might forgive me, and it has been the loneliest time of my life.
Eight
Tovah
“I WANT TO GO HOME.” Adina taps her nails on her viola case, the security blanket I just now realize she brought with her. “Tovah, can you take me?”
“I can do that,” I say. My parents look as shocked as I feel, but at least they’ve stopped blasting her with questions.
“Take your time,” Aba says. “Come home when you’re ready.”
Naturally, the elevator stops at every single floor on our way down to the lobby. I open my mouth a dozen times but have no idea what to say. I’m sorry is too trivial. Even the H
ebrew version, ani miztaeret, which has always felt full of more emotion to me, doesn’t fit. The ride is silent, except for the jazz piped in through the speakers. The soundtrack to getting bad news.
When we get in the car, Adina tucks her case between her knees and says, “I’m going to viola. Drop me off at Arjun’s.”
“Are you serious?” I assumed she’d have canceled her lesson.
It’s started to rain, fat drops spitting against the windshield. I turn on the wipers.
Adi is a statue. Somehow that makes her words sharp as scalpels. “I want my fucking normal life, okay? Can’t you let me have that right now?”
This shuts me up for the rest of the drive. Pound-pound-pound goes the rain. Drowning us.
“Do you want me to pick you up after?” I ask. “Or I could wait for you?”
“I’ll take the bus home.” She opens the car door, and I realize she forgot to buckle her seat belt.
Nine
Adina
APPARENTLY I HAVE FORGOTTEN HOW to play the viola. I fuck up my beloved Debussy prelude for the eighteenth time in a row. I have ogre fingers that cannot find the right notes. The piece is meant to be played très calme et doucement expressif: calmly and gently expressive. There is no gentleness in me today.
“Try again.” Arjun flips the sheet music back to the beginning. He taps a pen on the music stand with staccato clangs. “From this measure.”
The prelude starts quiet, gets loud.
Crescendo.
The conversation at the clinic rings in my ears, warring with my prelude.
Decrescendo.
Soon there will be sessions and experimental medication and research studies. I might never be independent again.
Crescendo.
“Focus.” Arjun’s voice slices up my thoughts, juliennes them like vegetables. There is an edge to it. I’ve never played this terribly.
My bow slips out of my fingers, falls to the carpet. Silent tears burn behind my eyes, and I ball up one fist tight, tight, trying not to break down.
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