Rules for 50/50 Chances (18 page)

“I'm freaked out,” I say.

“When are you not going to be freaked out?” he says. “Rose—it's just—why do you make things so difficult for yourself? This is easy. It's a great opportunity. A lot of people would kill for it.”

Heat rises in my cheeks. Maybe it does seem easy, to him—most things seem to be. “Fine. So let one of those people have my place.”

“Maybe you should if you're going to waste it,” he says. “At this rate, you'll waste your whole life thinking about things instead of doing them. You're exhausting to listen to.”

I get up from the table and slam my tray down on top of the trash bin. Grabbing my coat and nearly knocking over the chair, I head for the door. Caleb follows.

Outside on the sidewalk, Roosevelt kids rushing by on both sides, Caleb grabs my wrist and spins me around to face him.

“I'm sorry,” he says. “I didn't mean—I shouldn't have said that. But you can't not take chances in your life now, just because you don't know what's going to happen to you twenty years from now. That's absurd. There's too much stuff in this life that we don't know about anyway.”

Absurd. Exhausting. It's so cold my face hurts, and I can't tell if it's the wind or Caleb's words that makes my eyes water.

“I have to go,” I tell him. I leave him there by Angelo's and rush across the street.

Back in school, I duck my head inside my locker, pretending to look for a book, to pull myself together before going to physics. When my breath has steadied and my hands are defrosted enough to function, I take my phone out and search for the number of the one person I know who, unlike Caleb apparently, can help me make an objective decision.

Fifteen

Dr. Howard is a celebrity in the world of Huntington's—patients come from the far corners of the universe to see him. Fortunately, his office manager still thinks of me as an awkward twelve-year-old whose mother had just been handed her death sentence, so she squeezes me in for a quick appointment four days later.

Caleb's called three times since our conversation at Angelo's, but I haven't been ready to talk again, not yet. On my way to Dr. Howard's after school, I turn his words over in my head for the umpteenth time. I don't want to be exhausting. If I get some answers—one answer, in particular—maybe then I can figure out everything else.

Dr. Howard must've seen my name on his schedule, but he still looks surprised when he pokes his head into the waiting room and sees me sitting there. He motions me into his office.

“Long time no see, Rose. What can I do for you today? Everything okay?”

I'm pretty sure it's best to cut to the chase here. I don't even take my coat off.

“I need all the information you can give me about taking the test.”

“The
test.
The test to determine if you carry the mutation,” Dr. Howard says slowly. It's not a question exactly, but I can feel him questioning me regardless.

“Yes.”

Dr. Howard is the person who sat my parents down, almost six years ago, and explained why things were never going to be really good again. Then they translated his speech into something they thought was kid-friendly enough for me—meaning they lied in places, certainly by omission. We were in Maine when they told me. (Way to end a summer vacation.) We'd eaten lobster rolls for dinner, a whole lobster in each one. We'd had soft ice cream for dessert. And then instead of playing cards or working on the thousand-piece puzzle we had splayed across the coffee table in the rental cottage, they sat me down in their bedroom and said, well, here's what this is. Their bedspread had a navy and white ticking stripe cover—I didn't know what that kind of stripe was called at the time,
ticking stripe
. Ticking stripe makes me feel sick when I see it now. I stared over Dad's head to a painting of a seagull, one foot raised like he was practicing yoga. Or working on his balance, which I was now told my mother was going to lose progressively, among other things.

Dad cried. Mom and I didn't.

“Rose, it's very rare for a person as young as yourself to take the test. The guidelines strongly advise against testing minors—and certainly without parental consent…” Dr. Howard trails off.

“My eighteenth birthday is next month. I want to know about all my options.”

He sighs. “All right. Well, the test requires counseling beforehand. You would see a genetic counselor here at the hospital, at the Genetic Medicine Clinic. He or she would help you weigh the pros and cons of acquiring this knowledge, to ensure that you're making the right decision for you.”

“Okay.” So I have to get permission from a genes shrink. Fine.

“And you'll have three possible outcomes,” Dr. Howard continues. “If your test is negative, if it shows that you have between ten and thirty-five repetitions of the DNA base CAG on the fourth chromosome of the Huntington's gene, you are in the normal range and will not develop HD. If you have more than thirty-nine repetitions, you will develop HD at some point in your life. And between thirty-five and thirty-nine—”

“I know,” I interrupt. I've read all this online. “It's considered borderline. I may or may not develop the disease.” Certain uncertainty. A lifetime of questioning every decision I can't make immediately, every time I slurp my soup.

“That's right. Rose, really, speaking as a physician with a huge amount of experience with HD patients and families, I'd advise you to wait on this. You're seventeen. Even if you had a positive test result, it will be years before you develop symptoms of HD. Put it off at least a few more years. Consider it then, when you start thinking about having a family.”

It's strange to like someone who's only ever given you bad news, but I like Dr. Howard. He has four daughters, laughing and falling all over each other in a photograph on his desk that looks like one of those staged placeholder pictures they put in the frames. He very rarely wears an actual white coat, preferring zippered sweaters over his collared shirts. Even though he's feeding me more of the same lines my parents already gave me—that there's no point in getting tested so young—I appreciate that he's being honest with me about the options.

“The testing centers do have the right to refuse you the test if they think you're not of sound mind to make the decision,” he adds, almost as an afterthought. “Even if you're eighteen.”

“Not of sound mind?” I exclaim. “So they'd rather wait until the symptoms actually set in? I haven't lost my mind yet.”

“It's not about losing your mind. You're under a huge amount of duress for anyone, let alone a person your age. Your mother's disease is progressing—”

“I'm aware of that.” I don't mean to sound as snotty as I probably do.

“Has anyone ever told you not to make major life decisions in a rush of emotion?” Dr. Howard looks so deeply concerned for me that for a moment, I think he's forgotten he's talking to me and not one of his own daughters.

“This isn't exactly eloping to Vegas, Dr. H.”

He chuckles, his intense focus broken for a moment. “That, I can't advise you on. But this is an emotional time for you. And you can't unknow your HD status once you know it.”

“So when will this not be an emotional decision? That's what I don't get.”

“It's always going to be fraught, yes. But if you wait a few years, wait a decade even—”

A decade. I get it. “So, wait until my mother's dead?”

“Frankly, Rose, yes. Wait until you're not living with this thing in your face every day. Ten years from now you won't even be thirty yet. You'll still have plenty of time to do—to do whatever you want to do, either way.”

“I want to talk to the counselor,” I tell him.

Dr. Howard sighs again, takes his glasses off, and rubs his whole face and forehead. He has a high forehead, and his hair is thinning and graying like Dad's.

“Rose, you need to talk to your parents about this first. I can't come between you and them on this—I really can't.”

My eyes flood with tears, which catches me by surprise. “If it were one of your girls, in my situation—would you want her to know?”

He looks at me long and hard, like he's just plain sad about this whole thing, or feels somehow responsible for it, or something. “I don't know, Rose,” he says finally. “I really don't. I would want them to talk to me about it, though. Not keep it a secret.”

“I just want to meet with the counselor. Just to think about it. Please, Dr. H. I
will
talk to my parents about it, I promise.”

“You're giving me your word that you will not do this on your own? You know the counselor will want to verify that you have the support of your family?”

I bite my lip and take a breath. Then I nod. “I'll talk to them.”

“Okay,” he says, nodding. “I'll set up the referral.
Just
for exploring the possibilities. You will talk to your parents about this before you make a decision.” It's not a question this time.

“I will. Thank you.”

Outside in the wintery air, a few leftover, crisp leaves scuttle along the sidewalk in the wind. While I wait for the train, I pull my phone out and text Caleb. “Saw my mom's dr about the test. Maybe I just need more intel to decide about the audition.” I've already hit send before I realize that I want to talk to him again. And that wanting Caleb—wanting to know him, wanting him to know me, wanting him in my life—has become an inevitability.

 

 

“Walk me through this one more time,” Lena says in a stage whisper, leaning across the heavy oak table in the reading room of the library. We have a study hall, but we're obviously not studying. I've just finished telling her, also in a stage whisper, about my visit to Dr. Howard. “You're legitimately planning to take this test now, to find out if you're going to get your mother's disease approximately twenty years or more from now?”

I notice the reference librarian shooting us a dirty look, and I think Lena notices too, but we both ignore her. “If you could find out if you were going to get colon cancer, wouldn't you want to know?”

“My dad's cancer wasn't genetic, so, moot point,” she says, tapping a neon green highlighter against her physics notebook.

“Not moot point. If it
had
been genetic, if you
could
take a test and know with one hundred percent certainty, I'm going to get it or not, wouldn't you want to know?”

Lena stares past my head, into the middle space of the reading room. She chews her lip for a moment, unconsciously, squinting. Maybe she's thinking about what it was like when her dad was sick or something, I don't know. There were five months between Lena's father's diagnosis and his funeral. We were young, but not young enough to forget that mad dash from normal life to something unrecognizable.

“If it meant I could do something about it, then yes, sure. But if there wasn't anything I could do, then no. No way.”

“I just don't think that's true. I think if you were in the situation, you'd feel differently.” I see her point, though. There's no treatment for Huntington's, nothing you can do except wait for the first hand tremor, the first fender-bender, and watch it progress. It spares no one.

She shrugs. “Whatever you say.”

It's probably time to tell Lena the real reason I've been mulling this over so obsessively. That there's more than one big decision hanging in the balance, and I have to nail something down or I'm going to go crazy.

“Miss Julia wants me to audition for a scholarship. At UVPA.”

Lena's eyes snap to attention. “Wait,
what
? A full ride?”

“Full ride.”

“Hello! Oh my god! That's amazing!”

“I don't have the audition yet. I have to make a tape and send it to them if I want to be considered.”

The librarian trots over to our table. “Come on, girls,” she says. “You need to leave the reading room if you want to chat.”

“Sorry,” I say. Lena waits until the librarian's back is turned, and then does a silent scream, pumping her fists in the air wildly. She leans in again.

“I can record you. That's easy. UVPA is your dream school! Unless you found out just this second, I'm offended that you didn't tell me sooner!”

I do feel a little guilty about that. I've never kept a secret from Lena for much longer than it takes to write a text message, let alone a whole week.

“I know. Sorry. I needed to figure out how I felt about it first.”

“Figure it out? How could you possibly feel other than, hello, amazing?”

“You sound like Caleb.”

Lena pulls away from me and sits back in her chair. “You already told Caleb about this?”

Flustered, I grasp for a loophole. “I mean, he called—I had just talked to Miss Julia—it wasn't like…” I can tell from Lena's blank stare that she's not buying it. I give up. “You never tell Anders anything before me?”

Her cheeks flush. “Not majorly important, life-changing things, no. Obviously I'll tell you first if I get in to NYU.”

“Well, I guess you don't have to, now. Then we'll be even.”

“It's not a competition, Rose. I would want you to know first. You're presumably going to be in my life a lot longer than Anders.”

It's the first time I've ever heard Lena indicate that one of the guys she's dating isn't necessarily “the one,” and it takes me by surprise. I wonder if there's something going on with them that I haven't noticed.

“Are things okay with Anders?” I ask.

“They're fine. You know, it's just … We'll be in college next year. What are the chances these boys will last?”

She's probably right. Acknowledging that whatever I have going on with Caleb might just be temporary is comforting on the one hand, and feels like a punch to the gut on the other. Our argument in front of Angelo's was just over a week ago, but it's already fuzzy in my mind. We've talked every day since I saw Dr. Howard. I cast a glance over at the librarian, but she's busy droning on at what looks like a freshman (the oversize backpack is a dead giveaway).