Rules for 50/50 Chances (2 page)

“Just put 'em back here for now,” Margaret says, nodding toward our table. “Try not to leave the boxes someplace I'll trip over them, please, Caleb!”

The guy tucks the box of ribbons under the table and dusts off his hands. “All set.” He notices me standing there and offers me his hand. “I'm Caleb, by the way.”

“So I hear. Rose.” His handshake is so firm that it's almost painful.

For a split second, I register that I'm surprised to see a black guy here, and then scold myself for it. There are plenty of hereditary conditions that are common in black families, I know, but I guess most of the people I've encountered so far through the Rare Genes Project have been white. I'm not sure what that says about the organization itself, but the realization makes my stomach twist a little bit with embarrassment.

Caleb is probably a foot taller than me, with a wiry build, an almost-shaved head and thick, black plastic glasses—cute, in a skinny, nerdy kind of way. And the way he keeps his eyes on me, like we're going to exchange more than just our names, is disarming.

A kid tugs at my arm. “Hey! Can I have a ribbon, lady?”

“Lady! Who you callin' ‘lady,' kid?” I tease, as I lean down to pin the ribbon on the little boy's shirt. He's probably six years old, pudgy-cheeked and lacking in any discernible neck between the orb that is his midsection and the orb that is his head.

“
You're
a lady!” says Chubs, sticking his tongue out at me.

“Well, you're not much of a gentleman, are you?” I say, sticking out my tongue in return. Chubs lumbers off. When I straighten back up, Caleb's watching me and chuckling.

“What?” I ask, squinting at him.

Caleb shrugs, in a kind of casual-cool-attractive way. “Nothing, nothing. You have little siblings?”

“Negative. I just like kids.” When I was in middle school I did the Reading Buddies program with the kindergartners. All I had to do was read Arthur books to a little girl named Annabelle for an hour every week, and she more or less thought I was the coolest person in the world. That's why I like little kids: they're uncomplicated.

Caleb leans against the ribbon table, his arms crossed. “Well, you can have my little sisters if you want them.”

I laugh. “Uh, no thanks. My family is unwieldy enough as it is.”

“Fair enough,” says Caleb, taking a pile of ribbons from the table and coming around to stand next to me. “Mind if I join you for the ribbon-handing-out?”

“Are you trying to impinge on my ribbon territory, here?” I say.

“Clearly.” He rolls one of the ribbons over in his fingers and chuckles. “Blue jeans.”

“Get it?”

“Got it, thanks,” he says, grinning at me. “Not my first time at the rodeo, my friend.”

Standing so close side by side, I notice the gap between Caleb's front teeth. It's probably big enough to slot a quarter in, but in a charming kind of way. It gives his smile character. Over his left eyebrow, there's a small, wrinkled scar. Whatever his genetic oddity is, it isn't readily on show.

“Where'd you get that scar from?”

He puts a hand automatically to his forehead and rubs his eyebrow. “This one? Kicked in the face, school playground, age seven.”

“Are there others?” I ask.

“Others?”

“You said, ‘This one?' like there are others.”

“Oh, right. A few. I guess I played rough as a kid. Damaged goods.”

I start to try to say something clever, about how since he's volunteering at the rare genes walk I already assumed he was damaged goods, but I can't quite come up with the right words. Levi reappears, carrying a megaphone in one hand and a walkie-talkie in the other. “Ribbon bearers, I beseech you to listen up!”

“Did he just say ‘beseech'?” Caleb whispers, leaning toward me so that his shoulder is almost touching mine. The sudden shift in proximity bumps my heart rate up a notch.

“I'm pretty sure he did.”

“I need to ask you a favor,” Levi continues. “I've been asked to send a couple volunteers over to get some fresh boxes of T-shirts and bring them back to registration. Can I send you two?” he says, pointing to me and Caleb.

“Excellente,” Levi goes on, without waiting for a response. “T-shirt boxes are in the main supply tent, which is that-a-way.” He points across the Common to a huge white tent that looks like it could be harboring a college graduation or a decadent outdoor wedding. “Just take whatever they give you.”

I check my phone and see that I have a text from Dad, wondering where I am. It's already ten o'clock. I send him a quick reply. I suspect he'll be fine with me volunteering instead of walking—that must count as showing my commitment to the cause—and sure enough, I get a text back right away: “Great! Love, Dad.” He still hasn't learned that he doesn't need to sign his text messages.

Caleb and I set off across the green, threading our way through the crowd. “So you're not new to this either, I take it?” Caleb asks after a moment.

“No. We've come every year since my mom's diagnosis. I tried to get out of it this year, actually.”

Caleb laughs. “I guess I can't blame you. It's a lot of … rare genes. In one place.” I can feel him looking at me, but I keep my eyes on the ground. “I like it, though. It's nice to feel like part of a big thing. The cancer people get a walk so we should too, right?”

“Seriously. The cancer people get like ten walks.”

“At least.” Caleb smiles at me.

The truth is, the rare genes walk is a nice idea in theory, but in practice, most of the people here are dealing with different diseases and competing interests. We all want our disease to get the attention, because attention means funding and funding means research and research could mean a cure. I keep that uncharitable thought to myself, obviously.

“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 fundraiser 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, and apparently my non-response conveys more than I expect it to.

“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 Sick Loved Ones will think you're being cruel. They don't get it.

“Yeah,” I say. “Plus, then they die.”

Caleb and I sit in a 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.

Finally, he breaks the silence. “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 a 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.