Thirty-five
Adina
THE LAST TIME I WORE these jeans, I must have been twelve or thirteen. They’re too tight on my hips and they flare out at the ankles, a style I’m certain hasn’t been popular for years. I keep reaching down to pick at loose threads, but there aren’t any, so instead I scrub away fuzz that’s accumulated over years of living inside a drawer. I didn’t want to wear any of my dresses today. I don’t care about looking good.
When I explained my symptoms, Dr. Simon told me she could do a whole neurological and psychiatric exam. So we did the tests and now I’m back. Waiting.
If she tells me I’m sick, I have to begin preparations. I will have to figure out what to do with my viola, obviously, because I do not want it to wind up at a thrift shop or in a Dumpster. I will have to come to terms with the fact that I will never hear music again, never watch another black-and-white movie, never eat another cheeseburger, never see Israel. I will never see Ima or Aba or Tovah or Oscar at Muse and Music or Connor Mattingly or Laurel the pianist or Boris Bialik or the woman who drives the 44 bus.
I will have to find a doctor who can give me lethal medication. Will it be a pill or an injection? Would I feel each organ shutting down, feel my blood stop flowing, my heart slowing? Do I have to write some kind of good-bye-cruel-world letter, or is that just something they do in movies? What should I wear before I do it? My nicest dress? Pajamas? Many Conservative Jews are against cremation, so would my parents bury me? Where? Would my eyes and kidneys go to someone else? There is a little heart on my driver’s license that means I am an organ donor. . . . Is this what that is for?
I’d have to figure all this out, and oh my God, I’m not ready. The night of the party, I was so sure I’d still go through with my plan. I assumed it would mean ultimate peace for me. An escape from what I’ve seen Ima endure.
Now I am really fucking scared of everything I’m going to miss out on. I have been so glib about suicide—possibly because death terrifies me more than I can admit.
Please, I think to myself. Please Not yet.
“Adina,” Dr. Simon says when she finally calls me back. “There’s nothing on our tests that indicates you have Huntington’s right now.”
“What?” This was the answer I wanted, but I don’t quite believe her. “But, but the clumsiness, and the delusions . . .”
Dr. Simon leans forward, propping her elbows on her knees. “Here’s what I think is happening. Sometimes anxiety can bring on delusions and occasionally hallucinations. You’re dealing with a tremendous amount of anxiety. You likely experienced an auditory hallucination on the train.”
“So this is all in my head. That’s what you’re saying.”
“It does happen. I’ve seen many patients go through it.”
I don’t want her to tell me how many other people go through it. I want her to tell me how to fix it.
“How do I make it stop?”
“Counseling is a good option, and we can discuss medication for anxiety.”
But I have more questions. “Honestly, how much time do you think I have? I’m not trying to be morbid, but . . . a ballpark. Like, how much time before it starts getting bad?”
“I wish I could give you a real answer, but that’s the tricky part of this disease,” she says. “There’s a chance you won’t experience symptoms for another twenty years.”
“But there’s also a chance they could start in my twenties. Or before.”
“A chance, yes,” she says. “A very small one. There hasn’t been enough research about those cases to have really solid statistics, but some numbers indicate about five percent of all HD cases start that early. But you know we can’t predict that.”
With my fingernails, I scrape harder at the fuzz on my jeans. In this room, talking to Dr. Simon about this disease I am surely going to start suffering from at some point, with Tovah knowing my secrets and limited time, I’m certain, before she tells our parents, I feel trapped. I am utterly trapped in this body, my skin stretched too tight across my bones, my ribs about to snap. Without the plan, there is no escape, and the unknown terrifies me.
“But why don’t we know? We have cures for all sorts of diseases, and we can’t predict when this one in particular is going to start ruining my life?”
“Adina—”
“No, you know what?” I prop my boots up on the coffee table between us, kicking aside a few magazines and a box of tissues. My relief’s gone. I’m not sick, not yet, but I’m going to be. I’m going to have to keep waiting. Worrying. I haven’t actually escaped anything. “I’m so fucking sick of waiting. For the rest of my life, I’m going to wake up wondering if today is going to be the day. The day I can’t play viola anymore. The day I can’t feed myself. Why don’t you know when this will start happening to me?”
“I can guarantee you, Adina, people are researching that very thing right now.”
“I thought I was here for you to help me. Isn’t this your job? Aren’t you an expert? I just”—I draw in a deep breath, hiccup—“I just—”
I’m breathing hard, my skin getting tighter and tighter. Can’t look at Dr. Simon, a doctor with no answers and no cure, only platitudes about living my life normally and blah-blah-blah.
If I’m going to be stuck like this with no way out, I need something from her that apparently she cannot give me.
When my breathing returns to normal, after my panic attack or whatever it is subsides, Dr. Simon says, “I know it’s not fair. I hate it too. I hate this disease. But this is why I do this job. To show people that it’s horrible, yes, but it doesn’t have to be life-ending. Or life-ruining. Not at all. It changes things, and I think you’ll find that human beings are surprisingly good at adapting to change.”
I say nothing.
“We have a support group that meets the first Tuesday of every month,” she continues gently. “Would you like to try it next month?”
I’ve always dealt with things on my own, or with Tovah, or when I didn’t have Tovah, with Ima. Or maybe that’s the problem: that I have no one to talk to about this anymore, no sister, no friends. And I’m not sure how much longer I will be able to confide in my mother.
“Fine,” I say, though I’m not entirely sure I’ll show up.
“And like I said earlier, Adina, it seems as though you’re going through a lot of anxiety. And probably some depression, as well, based on everything you’ve told me.”
Depression. The word feels a bit like a missing puzzle piece. I think about the scars on my legs, my occasional inability to enjoy viola. The darkness in my mind.
“Oh,” I say, but I am not angry with her anymore.
“We could start you on a low dose of an antidepressant,” she continues. “It can help with the anxiety and the depression. I can also recommend a therapist who specializes in working with teens dealing with both.”
“That would be good,” I tell her. “I . . . I think I want to do that.”
She gives me a prescription, and then I’m done and it’s Ima’s turn with Dr. Simon. I’ll have a lifetime of doctor’s appointments, but Ima doesn’t seem to hate them. In fact, she’s never shown anything but graceful acceptance toward the thing that’s killing her.
On the drive home, when we are waiting to turn left at a red light, I say, “Ima, can I ask you something about Huntington’s?”
“You can ask me anything, Adina’le.”
“Didn’t you ever get angry that you have it? I don’t remember it.”
The blinker goes tick, tick, tick. It shouldn’t sound like a countdown, but it does.
“Of course I was angry. I tried my best to hide it from you and Tovah. I couldn’t put on anything except bravery in front of you two. You were old enough to understand what might happen to you, too. But I’ve accepted this machala arura, this damn disease . . . and that’s made it easier.”
“When?” I press as I swing left. All the snow is gone, and in its place are spring blooms, tulips and rhododendrons and cherry blossoms. “When did it happen? That acceptance.”
“It took a while. It didn’t happen overnight or in a month or even a year. I don’t know if I can give you an exact moment. My mind is a little muddled today.” She pauses. “Actually . . . do you remember the day you got into the youth symphony? That was the same day, if I recall correctly, that Tovah got her PSAT scores.”
“I got mine too,” I say. “They weren’t that good.”
“But I was so proud of you,” Ima says. “I knew how much effort you put into practicing. You wouldn’t have been happy if you scored well on a test. The symphony was what mattered to you, and it mattered to me that it made you happy. And in a similar way, Tovah was thrilled with her test scores. I realized I wanted to be able to enjoy those things with the two of you. And that meant realizing life was going on around me, outside of this disease.”
We’ve reached the garage, but neither of us moves to unbuckle our seat belts.
“What did it feel like? When it first started?”
“At the beginning, I started to forget things. You know that part,” she says. “And I felt . . . ‘off’ is maybe the best word for it. Left and right didn’t match. I was clumsy, and I’d never been clumsy before that.”
“Ze lo fair,” I say quietly.
“I know it’s not fair.”
“And I’m still angry. Sometimes . . . I think I’m angry at you.” I allow myself to look at her after I say this. Her deep dark eyes are stormy with guilt.
“It’s okay to be angry. I am too,” she says. Soft. Gentle. “I feel responsible. If only I had gotten tested. If only I had known earlier . . . But I didn’t. Adina’le, I’m so sorry this is happening . . . but we’re all here for you. You know that.”
My head is heavy as I nod. I wish I had an ounce of my mother’s strength, wish she had passed that along to me too. The two should go together, this disease and that strength.
“Aba and I have been trying to figure out how to talk to you about this, but we know you’ve been skipping classes.”
“Oh.”
“The school has called several times, and we’ve told them we would talk to you about it.” She sighs. “You can’t keep skipping classes. You have to graduate. You have to go to conservatory.”
“Am I not going to graduate?” I ask, suddenly worried.
“Your principal said that if you maintain perfect attendance through the rest of the year and make up the work you’ve missed, they will allow you to graduate. We explained . . . your situation.”
I squeeze my eyes shut. I wonder how many times this will be used as an excuse. I vow not to let it happen again. “Okay. I’ll make everything up, and I’ll stop skipping. I promise.”
“And then you won’t have to deal with Hemingway ever again.” She smiles. “If you’re not busy right now, will you play for me? I haven’t heard you in so long.”
“I play all the time,” I say, though in the past couple weeks, I have not played very much. When I left Arjun’s, it was clear I was no longer his student in addition to whatever else I’d been to him, and I have no desire to begin with a new teacher I’d work with for only a few months. I told my parents I quit private lessons because I want spending money once I’m at Peabody.
“But it’s in your room. With the door closed. Like the music is private.” She touches my arm. “I love hearing you play. I always have.”
“Okay.” So I set up my music stand in the living room and pick a piece she loves.
I hold my breath as I unpack my viola, patting its scar. I’m still unsure if I’ll fix it. There is no way to fix me, so perhaps I should let my dearest possession remain unfixed too.
I let myself collide with the music, unable to stop thinking about my mother, my future. Aba gets home from work and sits beside my mother on the couch, sliding an arm around her shoulders as they listen together. This tragedy has done so many things, but it hasn’t affected their love for each other.
I play, and play, and play.
This is still who I am.
This is who I will always be, even when I lose it.