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“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.”
