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Sunday morning, someone knocks on my door. I called in sick to work this week, skipped youth symphony rehearsal, slept through Shabbat. I am a perfect Jew. I haven’t touched electronics or money or done any kind of work. I rest, rest, rest.
I bolt upright in bed. “I’m . . .” Not doing anything. My viola’s in its case. My battery-drained laptop is on my desk. My parents want me to talk to our rabbi—not happening—and we’re supposed to go to family counseling “when I’m up to it,” but I don’t know when that will be. The longer I keep everything inside, the longer it doesn’t exist. That logic is flawed, but I can’t handle it any other way.
“Please.” Tovah. When I don’t reply, she interprets my silence as tacit approval and enters holding a stack of papers. We used to spend so much time in each other’s rooms. Sometimes one of us dragged a sleeping bag across the hall for a “sleepover.” We gossiped and watched bad movies and talked about all the things we wanted so badly we ached for them.
“I found some new information online,” Tovah says. “I’ve been doing a lot of research about support groups and counseling. And there are these supplements some people take that can potentially slow the onset of—”
“I know how to use the Internet.”
This is what Tovah does: She researches. She studies. The muscles in her jaw ripple. “I wanted to help.” Before she turns to leave, she slides the papers onto my nightstand.
“Are you going somewhere?” I ask, noticing she’s wearing a backpack.
“Oh. Yeah.” She rocks back and forth on her feet. “Volunteering at the hospital, then probably studying at the library.”
In other words: life as usual.
If our results were flipped, Tovah would have plenty of people to talk to, to stroke her hair and tell her hakol yihyeh b’seder. Lindsay would console her and the entire student council would organize a benefit for Huntington’s research. They would collect a record-breaking amount of money and present one of those giant checks to a charity organization, and Tovah would be smiling in all the photos.
“Close the door behind you.”
Once her footsteps fade, I allow myself a peek at her research.
NEW RESEARCH LEADS TO BETTER TREATMENT FOR HUNTINGTON’S DISEASE. . . .
HUNTINGTON’S PATIENTS: 10 TIPS TO KEEP YOUR BRAIN YOUNG. . . .
SOME INDIVIDUALS DEVELOP SYMPTOMS IN THEIR LATE-TEENAGE YEARS. . . .
I blink and read that section more closely.
Some individuals develop symptoms in their late-teenage years or early twenties
. Huntington’s may progress more quickly in teenagers.
I knew it was possible for symptoms to develop earlier than they did for Ima, and there is no way to predict when they’ll start. It is rare, the article tells me, for symptoms to develop so young, but rare still means possible.
I take my laptop to bed and grope around for the power cord. I balance it on my thighs, its heat warming my always-cold skin. No patience for reading, I watch videos. Some patients twitch and jerk like Ima, speak slowly like Ima, though without her distinct Israeli accent. Each month she sheds part of herself as the disease chews her up from the inside out.
My future will unfold in every corner of this house, in the kitchen and in the living room and next to me at the dinner table. A hooded figure with a scythe creeping closer and closer and closer . . .
At first my symptoms will be so slight that no one will notice but me: involuntary twitches in my face and fingers, a wrong note on the viola. Forgetting names and conversations, losing coordination, trouble processing long pieces of music, irritability, depression. Then I’ll struggle with my balance. I won’t be able to stand still onstage. I’ll have trouble walking and swallowing. I’ll lose weight. Chorea—that’s what they call the involuntary movements of someone with Huntington’s—will get worse. At that point, I estimate, I’ll have to give up viola. I might never become a soloist. I might forget how to play entirely. Erase these past nine years of my life.
Near the end, I will lose my ability to speak. I won’t be able to use the bathroom by myself. I will have to be tube-fed and I will no longer live among people I love, but in a nursing home, among the elderly with melting-plastic faces. There, surrounded by needles and beeping devices and suffocated by that thick, sour smell of hospital, I will waste away. No relief, just a slow progression into hell.
I’ve wondered about all this before, cried over it with my door shut and my music loud when I imagined losing my mother, but now there’s an element of realness that cannot be avoided. Before, there was a chance my imaginings were simply that: imaginary. It was a coin flip. Heads or tails.
I shut my laptop. My viola’s across the room, collecting dust bunnies. In the dark, its F-holes look like angry eyebrows, as though the instrument itself is disappointed in me. Although it’s still early and my parents haven’t gone to sleep yet, I can’t bring myself to get up and play again.
Twelve
Tovah
EVERY PATIENT HAS MY SISTER’S face. My mother’s. When I landed this hospital volunteer spot, I felt victorious, though I only work a four-hour shift every other week. I wanted more hours, but so did all the other high school volunteers who want to become doctors.
Today four hours might as well be forty. It’s my first shift since our results, and though I’m essentially a delivery girl—ferrying flower arrangements from the front desk to patients’ rooms, ensuring patients have water and blankets—I can’t concentrate.
“Can you deliver this to room 2420?” a nurse asks me from behind a person-size bouquet of roses. The tiny elderly woman is so happy to see it, her eyes well up.
