Rules for 50/50 Chances (3 page)

“Hey, HD!” I turn 360 degrees before I spot Caleb, jogging over to me. “I was looking for you. Look what I found!” He takes his hand out from behind his back and unfurls a blue T-shirt. Adult small. He's beaming.

“No way!” I exclaim. “What'd you have to do to score this?”

“Nothing … just tackled a woman with a tracheostomy, that's all. NBD.”

“Thanks, Sickle Cell.”

“My pleasure, HD. I'll see you around.” Caleb gives me a light shove on my bicep, I presume by way of saying goodbye, and then turns to go. “Oh, hey,” he says, turning back. “Do you have a last name, HD girl?”

“Who wants to know?”

“I do.”

“You planning to stalk me on the interwebs?”

He makes a face like he's considering it. “We'll see. I'd like to keep my options open.”

“Levenson,” I tell him. “What about yours, in case I want to do some stalking of my own?”

“Franklin,” he says. And then with a wink, which he manages to make kind of cool and not that cheesy, Caleb Franklin disappears into the crowd.

Right away, I peel off my giant blue T-shirt and replace it with the smaller one. On top of the tank top I'm wearing underneath, the small fits perfectly. I text Dad to tell him I'm leaving and cross Boylston Street to the subway, without waiting for a response.

 

 

At home, I unlock the front door and step into the quiet of our empty house. A draft is sneaking in through cracks in the floorboards and window frames, and the foyer feels almost too chilly for the first time in months. As if on autopilot, I go upstairs and wake up my computer. I've been thinking about this all the way home, and I don't really have a choice anymore. Now that Caleb's put the idea of getting tested in my head, I have to find out how hard it would really be.

Standing over my laptop, my pulse is racing and my mouth feels cottony-weird. I pull up Google and type, “Testing for Huntington's disease.” Six hundred seventy-five thousand results come up in 0.32 seconds. How is it possible, Rose Smart-Ass Levenson, that you have never typed those words into a search engine before?

The very first result is a guide to HD testing from an insurance company. Sure enough, it explains that coverage of such tests varies between plans, but that the cost tends to run about three hundred dollars. Three hundred dollars. Less than I have in my savings account from birthday checks over the years. Less than a month of my mother's drug cocktail, the cost of a handful of college applications.

Another result, from a foundation that does Huntington's research (I recognize the logo; my parents are on their mailing list) says that minors are only tested in rare circumstances. But I'll be eighteen in a few months, and as far as I can tell, there are no other age restrictions.

 

 

Two hours later, I hear a key in the lock downstairs.

“Child! We're home!” Dad calls as my family tromps in the front door. “Where'd you disappear to?” I hear him flick the television on immediately, turning it to the Red Sox game.

Taking a deep breath, I gather the various pages I've printed and pad down the stairs. My family is in the living room, collapsed on the couches. I drop the printouts on the coffee table in front of my parents, just as Dad's leaning over to untie both of their shoes.

“So, you lied to me, is basically what this is.”

“Sorry, what?” It takes Dad a moment to register that I'm talking about something serious. I hear the crack of bat meeting ball and the swell of the crowd—and then Dad mutes the television and looks at me.

“What is this?” He flips through the pages, squinting to read them without his glasses. Mom takes them out of his hands to look herself. “What are you talking about, ‘we lied'? Do you want to explain this to me like a rational human being or are you going to act like an adolescent?”

I know I'm being petulant, standing here with my arms crossed over my chest, waiting for them to get the picture without me having to spell it out for them, but I can't help it. Gram gets up and sneaks out of the room, giving me a sideways glance as she leaves. I can tell she wants no part of this conversation, and I don't blame her.

“First of all, you told me it cost thousands of dollars,” I say. “It costs three hundred dollars.”

“Thousands of—I don't think I said that, did I? I have no idea how much the test costs.”

I stare at him, holding my ground. Could I really have made that up? Maybe he never said thousands. Maybe he just said expensive, maybe I assumed. I can't remember, to be honest.

Dad goes on. “We talked about this ages ago—they don't do predictive testing on children, Rose. It's a decision for adults to make when they're ready.”

A conversation pops into my head out of nowhere, hazy, like I dreamed it: Dad leaning against the kitchen counter, Mom at the table, me hovering in the hallway where they can't see me. Dad says something about health insurance. “Can you imagine the premiums they'd make her pay? Her whole life, she'd be marked.” And then Mom's voice, agreeing. “There's no point, anyway. What good will it do her?”

“You told me I
couldn't
take this test,” I say.

“I don't think we ever said ‘couldn't.' I think we said ‘shouldn't,' not for a long time. Don't be ridiculous.” Dad sighs. “Rose, we just got home from a long day. Do we need to talk about this now?”

“I'm almost eighteen. This is not ridiculous!” My voice catches in my throat.

“Rose, s-s-stop,” Mom interjects quietly. “C-c-calm down.”

I turn from Dad to Mom and back again. “I'm sorry, but Dad, you just don't understand the position I'm in.”

“Excuse me?” my father says. “I don't understand? We're all living with this disease, Rose.” Dad puts his hand on Mom's trembling knee. She holds the papers close to her face, scrutinizing them, her subtle tremors a reminder that none of this is hypothetical.

“You are not living with the possibility of getting it.” I force myself to breathe in and out three times before I go on. “You should've told me the truth about this test. Maybe you thought I was too young to understand, but I'm old enough now. Or maybe you're just in denial about the truth, which is that I could end up like Mom.”

At that, Mom's head jerks up. The look on her face, honestly, scares the crap out of me. It's sadness mixed with fear mixed with shame or something, I don't know. I don't want to hurt Mom. Her illness, my risk—none of it is her fault. She didn't choose this, and neither did my father. But I force myself to say what I need to say, anyway. “Now I have this information. And it's going to be my choice if and when I get tested. End of discussion.”

I leave the room before they can respond. I know we'll have to talk this through eventually. But for right now, I want to be alone with this new information, and the strange new possibility of doing something about it.

Two

They used to call my mother's disease Huntington's chorea. “Chorea” because of the involuntary movements of any muscle group in the body that characterize Huntington's. It comes from the Greek word for dance. Which is kind of cruel/ironic, as far as I'm concerned, first because dance is what I
do
, and giving the same name to the thing that defines your life and the thing that swoops in to wreck it seems a little heavy-handed on the part of the universe, doesn't it? And second, because to dance one generally has to have control over one's body.

But as your chorea gets worse, you're losing control. I've seen videos on YouTube of patients with advanced Huntington's, and they look like they have no control at all: tongues sprawl out across their cheeks, feet jump, hands jerk this way and that way.

Among the other charming symptoms of our family heirloom: loss of impulse control; loss of memory; loss of motor skills; loss of the ability to walk, talk, and swallow properly; loss of empathy. Loss. It stops sounding like a word if you say it enough times.

 

 

Overnight, as predicted, a hurricane called Christine crept up the coast from the gulf. By nine on Labor Day morning, rain is already pelting my windows and a branch scratches anxiously at the side of the house. Outside, the trees lean hard with the wind.

I love storms, like my mother. We're New Englanders through and through, and I think there's something about being raised on the teetering edge of the mean Atlantic that makes you easily seduced by a weather forecast for big snow or thunder or gale-force winds. My father, on the other hand, sees only the inconveniences of weather: the snow he'll have to shovel, or the likelihood of a tree branch falling on the house.

When I was little and a big storm was heading for Boston, Mom and I would make a requisite Star Market run for Entenmann's doughnuts, the really bad-for-you kind with yellow cake inside and shiny chocolate coating outside. (It was the shininess that made them bad for you, that's what Mom always said.) We'd huddle in front of the television and compare the weather outside to the images from other parts of the Eastern Seaboard, checking to see if we were getting the good stuff or missing out. That was before our own storm hit.

 

 

I take the throw from the foot of my bed and wrap it around my shoulders, cozying up to the soft fleece as I tread down the creaky, uncarpeted stairs.

The living room, with big and not particularly well-insulated windows on two sides, sounds like it's in the middle of a car wash. Gram and Mom are already watching the news. I slouch down on the couch next to my mother and wait for someone to say something—anything—about last night's conversation. My words—
I could end up like Mom
—give me a sickening, guilty ache in my stomach every time I think about them. I hope Mom doesn't remember.

“Morning,” Gram says without looking up. There's no hint in her voice of anything resembling a reference to last night.

I rest my head against the couch cushion and close my eyes, listening to Gram suck air through her teeth, like she has something stuck in them, while she works on her crossword. These days my grandmother makes a constant stream of soft, irritating noises: half-humming as she walks around the house, clucking her tongue as she reads the paper, this air sucking. It drives me nuts enough to not even want to look at her while she's doing it. I'm afraid I'll snap and say something mean, which I don't want to do, because she really does mean well. Gram moved in with us last year to help her only son take care of his steadily falling-apart wife, so I can't really blame her for being a little humorless about the turn her life has taken. Just as her friends in London were starting their “third acts,” going on cruises all over the world, or at least passing the days playing bridge and gossiping about the neighbors, she made a return to caretaking that is undoubtedly more demanding than raising her own three children was.

Gram glances up from her crossword book. “All right?” she says with an uptick at the end. She still has a thick English accent, even after spending half her life in the States. The way she says it, it almost sounds like one word—“aw-right?”

“Fine,” I say.

“R-r-rose, this is a g-g-good storm, r-r-right?” Mom reaches over and squeezes my knee.

“Yeah, looks pretty good out there,” I say. I turn to Gram in an effort to be less irritable toward her. “What are they saying on the news?”

“Landfall in two hours or so. The brunt of the damage will be further south but we could still see some flooding, evidently.” On CNN, a British reporter named Alastair Dimbleby (which sounds more like a character out of
Harry Potter
than a real human) is currently standing in the middle of the street in Atlantic City, his feet planted wide apart so he doesn't blow over and one hand holding the hood of his official CNN all-weather parka over his head.

“Can I change the channel for a bit?” I say.

No one responds one way or the other, so I switch over to HGTV, where there's a repeat episode of
House Hunters
on.

“Oh, we've seen this one,” I tell Mom. “They pick the two-bedroom under budget. The brand-new cookie-cutter one.”

“Bad choice,” Mom says, her body whirring like a quiet refrigerator beside me—the motor inside her just humming and humming. Mom and I always agree that period features, crown molding and subway tile trump most things. Who needs double sinks in the bathroom? You and your spouse can't take turns spitting out toothpaste?

“Yowza,” Dad says, bursting through the front door with a sodden bag of groceries tucked under each arm. He's got the thick, reusable shopping bags, but I can tell our food is still going to be damp.

“So it's raining, I guess?” I say.

“You could say that. The supermarket was downright post-apocalyptic. I think I managed to score the last batteries in the city of Cambridge.”

Dad extricates himself from his soaked rain jacket and boots and drips his way to the kitchen.

“At least the power's still on. For now,” he calls from the other room.

“Want to make your old mum a cup of tea while you're in there, love?” Gram says. My grandmother would have tea fed to her intravenously if she could find a doctor who would do the procedure.

“Your wife w-w-wants tea t-t-too,” Mom shouts. She likes to assert that she still remembers she's his wife. One of Huntington's only kind features is that it tends to spare its victims' recollections of close personal relationships. Of course, when you lose control of your impulses and start saying horrifically nasty things to the people you know you love, it doesn't really help that you can remember their names.

“Oh, sure. No problem,” Dad says, poking his head back in the living room. “Don't anybody worry about me, I'm only a little bit damp down to my bones. I'll just fix the tea for the ladies. I suppose the child wants one too?”