“So, what’s your—you know…” He trails off. My disease, he means. I can tell.
“My mom has Huntington’s.”
I sense Caleb sort of tighten up next to me. That’s the Huntington’s effect. For people who know what it means, who can picture the total terribleness of what you’re talking about, it’s always a shocker.
“That sucks,” he says. I’m not sure I’ve ever gotten such a blunt reaction before, but he’s right. It does. His honesty makes me smile.
“Yeah. It sucks.” After a momentary awkward pause, I ask, “What about you?”
“Sickle cell. My mom and sisters have it.”
“That sucks,” I say. (Although frankly, sickle cell is basically a walk in the park compared to Huntington’s. It doesn’t even kill you anymore.)
At the supply tent, a double-helixed guy with a clipboard points us to the boxes we’ve been tasked with transporting, each marked in black Sharpie with their sizes. Caleb piles one on top of the other in my outstretched arms, and then hoists up a stack of three himself.
“Why do you think they have no small or medium T-shirts?” I ask over the top of my boxes. “Look, your boxes are all larges and extra larges. Mine too, right?” Caleb surveys my boxes and nods. “What about us small people? That’s what I’d like to know. This is discriminatory.”
“You could take a kiddie size,” Caleb says, laughing. “Look—there are the baby ones. Five-T might fit you, actually. You’re miniature.”
“It’s called ‘petite,’” I correct him. Five foot one, and it’s already a sore point. I’ve been the shortest girl in ballet since I was three years old. “And I don’t need a kiddie size, thank you very much.”
“Whatever you say, HD girl.”
I’m glad the boxes are masking most of my face so that Caleb can’t see me blush. “Okay, Sickle Cell boy.” Over his pile of boxes, Caleb flashes me a gap-toothed grin.
* * *
We make several more trips back and forth across the green with boxes of T-shirts. They’re not light, and even though it felt like a cool, fall day earlier, after all the schlepping, I’m sweating and exhausted.
“Snack break?” Caleb asks, when we drop off our third round of boxes. I nod, scraping the hair off my sticky neck and into a ponytail. We make our way to the refreshments area and grab a bag of caramel popcorn and two cups of a juice drink in an alarming shade of red.
“You’d think this kind of beverage could actually give a person a genetic mutation,” Caleb says.
“Agreed. Didn’t they outlaw this shade of food coloring in Massachusetts already?”
We find an unoccupied patch of grass and slump down on it. The crowd around the registration area has started to thin as more people have headed off on the walk, and I stretch my legs out on the grass and point and flex my toes a few times in my sneakers.
“So is your family here?” I ask, taking a handful of popcorn from the bag.
“They’re walking. I’ve been doing the volunteer thing for a couple of years, ever since Levi got to me. You know Levi?”
“I just met him today.”
Caleb crunches on some popcorn. “He’s a pretty cool dude. He’s Mennonite, from Pennsylvania.”
“Mennonite, like Amish?”
“They’re close, but not the same. Levi’s got like five brothers and sisters with something called maple syrup disease, and now he’s in med school up here.”
Maple syrup disease—there’s one I’ve never heard of. I’ll have to Google it when I get home.
“Anyway, I met him at a fund-raiser my parents dragged me to, and he roped me in. He’s hard to say no to.”
“I noticed that,” I say.
“So, your mom has HD? Symptomatic?”
Caleb talks like me, like a person who knows something—maybe too much—about this stuff. I cast my eyes out over the Common for a moment, taking a sip of toxic red juice.
“Sick people are a pain in the ass, right?” he says.
I practically spit Kool-Aid all over myself. One of the unspoken rules of Having a Sick Loved One is that you don’t talk smack about them. In other words, you don’t ever say what you’re really thinking, because people who don’t Have a Sick Loved One will think you’re being cruel. They don’t get it.
“Yeah,” I say. “Plus, then they die.”
Caleb and I sit in silence for a moment, picking at the caramel popcorn, each in our own world. It’s nice, in a weird way—knowing that the person in his own world next to me understands a little bit about what my world looks like.
“What about you? Have you been tested for it?”
I’m not surprised that Caleb knows that there is a predictive test for my mother’s disease—that I’ll be able to find out whether or not I’ll get sick, before it happens. It’s not something I’d normally discuss with a stranger, but there’s something about Caleb that makes me feel like I can talk to him.
“No,” I say, plucking at some grass at my feet. “It’s really expensive, and insurance doesn’t cover it. Like a couple thousand or something.”
That’s how Dad explained it to me, when they sat me down and told me I was at risk for Mom’s disease, but that I had a lot of years left before I had to worry about it. It was a year after her diagnosis, and I guess they wanted to avoid my learning about the whole fifty-fifty chance thing via Google, which most definitely would have occurred. They thought if they told me the truth about my risk factor, they could keep me from worrying about it. But it turns out that it’s not so easy to just not worry about something like a fifty percent likelihood of death by drowning in your own brain.
“It’s that expensive? Really?” Caleb asks. “That surprises me. Sickle cell testing’s like a couple hundred bucks a pop. Why would the HD test be so different? It’s still just a blood test, right?”
I don’t know why it’s so expensive. That’s just what they told me. I never questioned the cost of it.
“Sorry,” Caleb says, practically interrupting himself. “I’ll shut up now.” He wipes his sticky hands over his jeans and stands up.
“No, it’s okay. Really,” I say, even though I’m feeling a bit queasy. I’m not sure whether it’s the conversation or the red juice that’s turned my stomach. Caleb offers me his hand and pulls me up to my feet. His hand grasping mine feels … warm. And strange.
The commotion at the registration area has thinned out significantly, and when we get back there, Levi comes bounding over like an enthusiastic puppy. “Sorry to break up this excellent team,” he says, “but I need to recruit Caleb for some heavy lifting. If that’s all right by you?” he asks Caleb, who shrugs.
“Whatever you need.”
“Excellent. Do me a favor and head back to the supply tent, and tell Bill that I sent you. He’ll fill you in.”
Caleb turns to me, almost apologetically, I think. “Nice meeting you, HD girl. See you later?”
“Sure,” I say, swallowing the lump in my throat. “Good luck with that heavy lifting.” I don’t think I’m imagining that Caleb lingers there for just a moment, before he heads off toward the supply tent.
* * *
I stick around the registration tables, handing out ribbons to the last of the new registrants and, if I’m totally honest, waiting to see if Caleb’s going to come back. But after an hour or so, I’m antsy and ready to go. I can’t get our conversation out of my head. The truth is, I haven’t looked into the cost of the Huntington’s test because I’ve never really considered it an option. From the beginning, my parents always said it would be a choice I could make when I was much older, like getting ready to have a kid. They said children weren’t allowed to get tested, and I believed them. I was a child, at the time. But now? I’m seventeen, about to head off to college. I’m old enough now to know what’s really going on.
Charging across the Common toward the port-a-potties, my whole body feels like it’s vibrating with nervous energy.
“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, ssstop,” Mom interjects quietly. “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 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 Chr
istine 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 has let it go.
“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.
Rules for 50/50 Chances Page 2