Rules for 50/50 Chances

Rules for 50/50 Chances

 

Farrar Straus Giroux Books for Young Readers

175 Fifth Avenue, New York 10010

Copyright © 2015 by Kate McGovern

All rights reserved

Printed in the United States of America

Designed by to come

First edition, 2015

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To come

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For my parents; and for Gram

Rules for 50/50 Chances

FALL

Rule #1: Don't make plans you can't keep.

One

If you had a crystal ball, like in a fairy tale—or a magic mirror or one wish or whatever—would you want to know how you were going to die? Would you want to watch it happen, in slow motion, every day?

My mother is my crystal ball.

I wake up to glass hitting the kitchen floor.

It's the Sunday before Labor Day, the last Sunday of my last summer vacation of high school. I have no ballet today, and what I'd really like to do is sleep late, then nothing in particular. No such luck.

It's a juice glass. I can tell because the sound is more like a tinkling-shatter than a heavy crash. My mother drops things with some regularity these days, so I've become aware of the particular cadences of different materials hitting the floor. This is a thin glass.

When I get down to the kitchen, my mother is standing barefoot by the sink. Her hands are shaking. And there's a glass, formerly used for holding juice, in shards on the floor.

“I'm s-s-such an
idiot
,” she says. “S-s-sorry.” Her words slur gently, like they have more and more regularly over the last six months.

“It was an accident,” I say. “Careful. You'll cut yourself.” I bend over and pile a few shards in my palm.

My father pounds down the stairs in his towel, dripping from the shower. “What happened?”

“Just this f-f-fool,” Mom says. “Throwing g-g-glasses.”

“That's my wife you're talking about. Don't call her a fool.” He leans over and kisses her. “I'll get a broom.” As he crosses to the pantry, he calls over his shoulder to me. “Get a move on, kid! Places to go, people to see! It's a beautiful day to walk for genetic research!”

Indeed. We've been walking for genetic research every Labor Day weekend since my mother's diagnosis, when I was twelve, which makes this my sixth Walk for Rare Genes. The walk is sponsored by an organization that does advocacy for something like seven thousand genetic diseases, most of which are too rare for anyone to particularly care about on their own. Unless, of course, you find yourself in possession of one, like we do.

Ours is a mutated gene on chromosome 4. The gene's called Huntingtin, and if yours is messed up like my mother's, you end up with Huntington's disease. Don't ask why the two huntingtons—the gene and the name—are spelled differently; I have no idea. What I do know is that if you've got that mistake on chromosome 4, like my mother does—the tiniest typo in a book with billions of words—then your Huntingtin gene goes haywire and basically wreaks havoc in your brain. Things start deteriorating in your mind and your body, until you're not the person you once were, and then they keep deteriorating until you die. Slowly, painfully, and without any chance of reversal.

Oh, and as far as my genes are concerned—it doesn't matter that my father doesn't carry the mutation on chromosome 4. I only need to inherit the mutated gene from my mother to be royally screwed. Which means that after watching my mother fall apart, I have a fifty-fifty chance of falling apart, too.

 

 

I shower quickly, and dig out a navy blue tank top to wear with jeans. Blue is the color of the day, because, you know, the whole genes/jeans thing. Even the rare genes ribbon is made of denim. I've gotta hand it to them, this organization may be representing diseases that affect only tiny factions of people around the world, but their marketing people know what they're doing.

Just as I'm rubbing down my wet hair with a towel, Dad pokes his head into my bedroom, knocking once as he opens the door. He's dressed head to toe in blue, too—blue T-shirt, blue jeans; even his Nikes have blue trim, but I think that's an accident.

“All set?” he says.

“Bells on, I assure you,” I say.

“Look, I know you're not that psyched about this.” He taps his fist against the door frame a couple times. “But it's important to your mother.”

“Is it?” I'm pretty sure that at this point, Mom doesn't even remember that we do this every year. Maybe she'd prefer to just sit in the backyard all afternoon and enjoy the nice weather without the fuss. Every time there's a beautiful day now, I wonder when it'll be the last day that Mom registers as beautiful.

The look on Dad's face makes me regret saying anything, though. A few years ago, I thought this walk was fun—joining all the other families in a sea of blue shirts and balloons, eating caramel popcorn and cheering all the way along the ten-mile route. Your feet hurt at the end and that meant you'd done something worthwhile. There was a feeling of solidarity with all those other people whose lives had also been turned upside down by their own invisible bad luck.

But now, the sight of all those kids in wheelchairs and their parents plastering smiles across their faces like
they're actually okay with this
makes me feel kind of nauseous. Plus, Mom can't walk the whole way by herself anymore, so she uses her motorized chair, too, and walking alongside her makes me feel like I'm supposed to be one of those smile-plasterers, too. It's all, “Hey, world, I'm so strong!” I'm not.

Still, I don't feel like bumming Dad out. “I'll be right down,” I say, trying to soften my tone. He winks at me and disappears down the stairs.

When I find my family in the living room a few minutes later, Dad is loading bottles of water into a backpack and my grandmother is putting sunscreen on every visible inch of my mother and herself.

“R-r-rose,” Mom says, smiling at me, probably already having forgotten our juice glass morning. “R-r-ready?”

For the walk, maybe, Mom. Not for anything else.

 

 

When we get to the Boston Common, the registration area is already buzzing with blue-clad families. The organizers, recognizable by their enormous, spongy foam hats shaped like blue DNA double helixes, are chanting into megaphones: “Care about rare! Care about rare!” Across the grass, the starting line is marked by a huge, double-helix archway formed from blue balloons. There's a steel drum band playing some cheery Caribbean tune, and circus performers (in blue, obviously) walking on stilts and carrying signage advertising a free performance by Blue Man Group at the end of the day.

Even the sky is appropriately clad for the walk—bright blue, of course, tempered only by an occasional wispy cloud. The whole Eastern Seaboard is supposed to get slammed with a hurricane tomorrow, but today is beautiful. The air is unusually crisp for so early in September—there's no humidity, and it smells of freshly cut grass plus something like pipe tobacco. (I'm not sure it's really the smell of pipe tobacco—I don't smoke a pipe, obviously—but my dad used to when I was little, just every now and then on a nice fall evening, so that's what fall smells like to me.) It's hard to maintain an oppositional stance to this outing when the weather is so unrelentingly gorgeous.

Dad registers us, while Gram, Mom and I stand around, taking in the scene. Or Gram and I do, anyway. Mom sits in her chair, looking mildly irritated every time one of us tries to fuss with something on her—her floppy sun hat, the pillow behind her back, the settings on her chair. Dad emerges from the crowd and passes around our T-shirts—all extra-large, of course. Why do they only seem to order XLs and XXLs for these things? When I pull the T-shirt on over my clothes, it reaches my mid-thighs. My best friend, Lena, could probably find a way to belt this and make it look trendy.

“Right, so, we're in the ten a.m. kickoff group, so we've got thirty minutes until we need to head to the starting line. Anyone need a port-a-potty?” Dad asks. Gram, who's helping Mom into her blue T-shirt, waves him off.

I shake my head. “I'm going to find some orange juice. Want anything?”

Dad checks his watch again. “No thanks. Meet us back here in fifteen?”

I flash him a grim thumbs-up and wander off, trying to find a way through the crowd. By the registration tables, my eyes land on a young couple with two kids, one on foot and the other in a wheelchair, carrying a placard with a third little girl's picture on it. Blond curls frame a cherubic little face that looks almost perfect except that her features are slightly distorted—her forehead bulges out too much, her eyes protrude, her cheeks are distended. I look away.

 

 

The registration tables form a long border along one side of the park, and beyond them, there's just empty green space, where a few normal people are out for a nice Sunday morning walk (no doubt wondering how they ended up in this mess). I make a beeline for the normality.

“Hey there!” A guy a little older than me touches my arm as I try to get past the registration area. “Care about rare?” He grins at me. He's wearing a collared shirt under his blue T-shirt and one of those double-helix hats. I force a smile.

“I see you're here for the walk. Starting line's that way.” He points, helpfully, in case I hadn't noted the giant balloon arch and multiple signs pointing in the opposite direction from where I'm headed.

“Right, I'm just—I was just getting some air.”

He tucks his clipboard under his arm and takes me in for a moment, concerned. “The crowd's a little overwhelming,” he says with an earnest nod.

“I guess, yeah.”

“It's great to have so many people come out for this, though. Did you know that taken together, rare genetic disorders are one of the leading causes of childhood deaths in the world?” I didn't know that. “I'm Levi, by the way.” He reaches out and practically grabs my hand to shake it.

“Can I ask you a favor?” he says, not waiting for me to introduce myself in return. “I'm

short on volunteers handing out the ribbons over there.” He gestures toward one of the tables. “Mind giving us a hand?”

I squirm. “Oh, I … My family's waiting, you know? I'm supposed to be walking with them.”

Levi nods. “Sure, sure, I understand. I just thought, you know, if you're not feeling the crowd … I could use some help. No worries. Enjoy the day! Care about rare!” He gives me a little salute, and then saunters off into the crowd.

I stare out across the sea of blue, and for a second, I let myself wonder about all those people, about how their lives are like mine or not, and how much their genes dictate their every moment. Maybe it wouldn't be so bad to try something different for this year's walk.

“Hey, Levi!” I call after him. “Where are those ribbons?”

Levi gives me a big smile like he knew I'd come around, and introduces me to the lead volunteer at the ribbon table—a woman named Margaret, who explains that I'll need to pin the ribbons directly onto most of the children because they won't be able to manage the safety pins. I briefly wonder if we couldn't speed things up by handing the ribbons to the parents and letting them deal with the safety pin issue, but I don't say anything. Instead, I watch Margaret for a minute, grinning and calling out, “Care about rare!” as she waves ribbons at passers-by. Then I plaster a smile on my face and follow her lead.

“Special delivery! Where do you want these,
Marg-oh
?” booms a male voice, coming up behind us. I turn, assuming it's Levi, but it isn't. It's a guy, my age-ish, carrying what I assume is another box of ribbons for the masses.