You'll Miss Me When I'm Gone

My parents are watching an Israeli movie in the living room, subtitles on for my dad’s benefit. Adina and I speak Hebrew with our mother, who was born in Tel Aviv and lived there until right after her mandatory military service. We call her Ima and our father Aba. He’s American and not quite fluent in Hebrew, though he’s been taking classes for years.

“Yom huledet sameach.” Ima wishes me a happy birthday as Aba pauses the movie. Her head jerks upward. Twice. Three times.

It doesn’t look too unusual unless it happens thirty or forty times a day.

Huntington’s makes her body do things she can’t control, makes her temper unpredictable, makes her forget names and conversations. I never know if something I say will make her furious, or if she’ll remember tomorrow where I went tonight. Or if one day she’ll forget my birthday altogether.

“Todah,” I thank her.

“Eich ha’yah?” Aba asks in stilted Hebrew.

“About as fun as skating with a few dozen small children can be.”

He smiles, and then an alarm on his phone beeps. “Time for kinuach,” he says.

A while ago Ima insisted we call her pill regimen “dessert” so she wouldn’t sound as sick. There’s no cure for Huntington’s, but the meds reduce her symptoms. Mood stabilizers and antidepressants, plus antinausea pills to combat the side effects.

I was fourteen when Ima was diagnosed. She’d been acting strangely for a while, dropping cups and plates, forgetting conversations we’d had. Yelling at us when she’d only ever been gentle. Huntington’s is a genetic disease that slowly kills the brain’s neurons. There’s no way to tell when symptoms will appear or how fast the disease will progress, though usually people start showing signs in their forties or fifties. Sometimes before then. People gradually lose the ability to walk and talk and swallow food. In the final stages of the disease, they’re confined to beds in assisted living facilities. Time between onset and death is ten to thirty years, and there’s no cure.

Though her symptoms aren’t grave now, the reality that this disease is fatal has only started to sink in over the past few years.

I leave my parents to their movie and head upstairs to my room. When I flick on the lights, I jump: my sister’s standing in the middle of the room like she’s haunting the place.

“You scared me,” I accuse, and she rolls her shoulders in a shrug that suggests she’s not actually sorry. I swipe an orange plastic case off my desk and shove in the night guard my dentist makes me wear for bruxism: grinding my teeth too much, especially while sleeping. It’s caused by stress, but my hectic schedule will have been worth it when I’m accepted to Johns Hopkins.

“I wanted to talk to you.”

She hasn’t been in my room in a while. With the light on, she scrutinizes the walls, the photo collages of me and Lindsay and a few other friends. My shelves overflow with medical books and Jewish texts. A printout of next week’s Torah portion, Ha’azinu, on my desk so I can study it before services. Then there are the academic achievement awards and middle school Science Olympiad medals. Framed above my desk is my most prized possession: a ticket from a Nirvana show my dad went to when he was my age.

I’m not sure what’s on Adina’s walls. I haven’t been in her room in a while either.

“Fine. Talk.”

Adi regards my bed as though she doesn’t know if she should sit or not. Pushing some of her hair off her shoulder, she settles for standing, crossing one ankle behind the other. We’re fraternal twins, “te’omot” in Hebrew. It’s similar to the Hebrew word for coordination, which when it comes to us is wildly inaccurate. We share some features: same long thin nose, same curves. Adina’s alway

s been more comfortable in dresses that accentuate the lines of her body, while I prefer loose clothes that disguise mine. We have the same thick almost-black hair, though mine is coarse and hers is like silk. I chopped it into a pixie when I started high school, but Adina keeps hers long, curls twisting halfway down her back. Even if I wanted to look like her, I never will.

Her dark eyes are hard on mine. She has Ima’s eyes, while mine are light blue like Aba’s. After a couple agonizing minutes of silence, she says, “I don’t want to take the test tomorrow.”

“Are you fucking kidding me?” The night guard goops up my words. Makes them less sharp than I want them to be.

Not knowing has to be worse than a positive result. We can prepare for the worst. We can’t prepare for an unknown. Not taking the test means even more years spent wondering, wondering, wondering if we’re going to end up like Ima. If we take it, there’s a chance for relief. To know that we’ve been spared.

As little as we talk these days, I’m too scared to do it alone. This fate binds us as sisters, as twins, though the rest of our lives have spun in opposite directions. It’s something we have to do together—or not at all.

“I keep thinking about how much happier I’d be if I didn’t know.” Her arms hug her chest. Adina’s prone to big, dramatic emotions. If she thinks she’s played poorly in a show, she whines and slams doors, sometimes even cries. I’m thirty-six minutes older than she is, but the gap between us could span an entire geologic era. “I’m not ready.”

I pull a pair of pajama pants from a dresser drawer. Slam it shut. “Adina.” I snarl her name as I whirl around to face her. “We’ve had four years.”

“I want to keep focusing on viola. If I don’t take it, I won’t have to worry as much about the future, and—”

“You know why you have to take it with me,” I interrupt her. “You owe me.”

The heaviness of her debt sags between us as we stare each other down. She knows what she did. Knows the balance between us is permanently skewed. And that means I get what I want now.

Adina’s jaw quivers. “I was hoping for a little empathy. But clearly I went to the wrong place.”

“So you’re done in here?” I ask as I start unbuttoning my jeans. Her puppy eyes won’t win her any pity.