She nods.
“So your father has HD and your oldest brother is gene positive. I have your family’s medical history from JJ, so we don’t need to go through that again. Let’s talk about why you’re here. Why do you want to know?”
“I’m not sure I do.”
“Okay.”
“I mean, sometimes I think living with the constant uncertainty is worse than knowing that I’m going to get it.”
He nods. “So how’ve you been dealing with the uncertainty?”
“Not that great.”
The questioning, the stress, the anxiety are always there, like an annoying radio station playing too loudly in the background that she can never turn off or completely tune out. She becomes gripped with panic many times a day—if she loses balance in a standing pose in class, if she drops her keys, if she forgets her phone, if she catches herself jiggling her foot. Or for no reason at all. It can simply be that there’s enough time and space for her mind to wander—waiting for class to start, waiting for her tea to steep, watching some inane commercial on TV, trying to meditate, listening to her mother talk. Her thoughts beeline to HD. She’s like a teenager with a mad crush on a bad boy, or a junkie fantasizing about her next hit of meth. She can’t resist her new favorite yet destructive topic and obsesses about it every chance she gets. HD. HD. HD.
What if she has it now? What if she gets it later? What if all of them get it?
“Are you feeling depressed?”
“That’s kind of a ridiculous question.”
“How so?”
She sighs, annoyed that she has to spell it out for this guy.
“My dad and brother have a fatal disease, and I might have it, too. This isn’t exactly the happiest time in my life.”
“Your brother has the gene. He doesn’t have the disease yet.”
“Whatever.”
“It’s an important distinction. He’s the same guy he was the day before he found out his gene status. He’s a perfectly healthy twenty-five-year-old.”
Katie nods. It’s so hard for her to look at JJ now and not see him differently. Doomed. Sick. Dying young. HD. HD. HD.
“And you’re right, it’s totally normal to feel a bit depressed with all that’s happening. Have you ever been depressed before?”
“No.”
“Ever been to see a psychiatrist or psychologist for any reason?”
“No.”
“Are you on any medication?”
“No.”
One of the symptoms of HD is depression. Some people with HD begin with the physical symptoms, the movement changes she was just tested for by the neurologist, but some people begin with the psychological symptoms years before any of the chorea sets in. Obsession, paranoia, depression. She can’t stop thinking about HD, she’s convinced that God has cursed her whole family with this disease, and she’s sad about it. Is her less-than-bubbly mood of late the first sign of HD creeping through the cracks, or is it what any normal person under these totally abnormal circumstances would feel? Which comes first, the chicken or the egg? It’s a circular mind fuck.
“I’m pretty sure I have the gene,” says Katie.
“Why’s that?”
“JJ looks exactly like my dad, and he has it. I look like my dad’s mother, and she had HD.”
“That’s a pretty typical assumption, but there’s absolutely no truth to it. You can look exactly like your dad or your grandmother and not have inherited the HD gene.”
She nods, not buying one word of it.
“This might be a good time to go over some basic genetics.”
Eric walks over to a white board on the wall and picks up a black marker.
“Uh, do I have to write this down?” She didn’t bring a pen or paper. JJ didn’t warn her about any of this. She wishes Meghan had gone first. Meghan would’ve told her everything.
“No, there’s no quiz or anything. I just want to help you understand how the inheritance of HD works.”
He writes a list of words on the board.
Chromosomes. Genes. DNA. ATCG. CAG.
“The genes we inherit from our parents are packaged inside structures called chromosomes. We all have twenty-three pairs of chromosomes. Each chromosome pair consists of one that came from Mom and the other from Dad. Our genes are arranged along the chromosomes like beads on a string.”
He draws these strings and beads on the board. They look like necklaces.
“You can think of genes as recipes. They’re the body’s instructions for making proteins and everything about you from eye color to disease susceptibility. The letters and words that make up the gene recipes are called DNA. Instead of the A-B-C alphabet, the DNA alphabet letters are A, T, C, G.”
He circles these letters on the board.
“The change underlying Huntington’s involves these DNA letters. The Huntington’s gene is located on chromosome
four.”
He points to a dot on one of the necklaces.
“There is a sequence, C-A-G, that repeats over and over in the HD gene. On average, people have seventeen CAG repeats in the HD gene. With Huntington’s, there are thirty-six or more CAG repeats. This expansion of the gene is like changing the recipe, and the altered recipe causes the disease. You with me so far?”
She nods. She thinks so.
“So let’s look at your family tree. Remember, we inherit two copies of every gene, one from our mother and one from our father. Your dad inherited a normal copy of the HD gene from his father, but he inherited an expanded copy from his mother, who had HD. Huntington’s is what’s called a dominant disease. You only need one copy of the altered gene to inherit the disease.”
He draws a square next to a circle on the board and draws a line between them. He writes grandfather over the square and grandmother over the circle and draws a line between them. He then shades in the circle black with the marker. He draws a line like a stem down from her grandparents to a shaded square labeled father and connects her dad’s square to an unshaded circle labeled mother.
“Now there’s your generation.” He draws squares for JJ and Patrick, circles for Meghan and Katie. He blackens JJ’s square, and the sight of it blackens Katie’s stomach. She shifts her focus to her circle, empty for now. She closes her eyes for a moment, a white circle emblazoned in her mind’s eye, holding on to it. A symbol of hope.
“Each of you inherited a normal copy of the gene from your mom. Remember, your dad has one normal copy of the HD gene from his father and one expanded copy from his mother. So each of you inherited either his normal copy or the expanded copy. If you inherited the normal copy from your dad, you will not get HD. If you inherited the expanded copy, you will develop HD if you live long enough.”
“So that’s how each of us has a fifty percent chance of getting this.”
“Exactly,” he says, smiling, seemingly pleased that she followed his biology lecture.
So it really does comes down to random chance. Shit luck. Nothing she has done or will ever do can affect it. She can eat a vegan diet, practice yoga every day, have protected sex, stay away from drugs, take her vitamins, and sleep eight hours a night. She can pray, hope, write positive affirmations on her bedroom walls, and light candles. She can meditate on an empty, white circle. None of it matters. There it is on the board. She either already has the gene or she doesn’t.
“Fuck,” she says. Her eyes widen and she presses her lips together, her mother’s voice in her head scolding her with a harsh Language! “Sorry.”
“That’s okay. You can say ‘fuck’ in here. You can say anything in here.”
Her lips part and she exhales. She feels that she has to be so careful now, especially around her family, worrying about what not to say, what not to notice. Sunday suppers in that cramped kitchen are particularly excruciating, where every spoken and wi
thheld word seems to stomp on a minefield of eggs, crushing them into sharp shards that slice her lungs, making it painful to breathe.
There’s a noticeable pause in conversation. The air in
the room fills with something. An invitation. A promise. A dare.
“When I was a kid and we played truth or dare, I always picked dare,” says Katie.
“So you were a risk taker.”
“No, not at all. It was just the better choice, better than having to admit some embarrassing truth about myself.”
“What was so embarrassing about you?”
“I dunno normal stuff.”
The baby of the family, she was forever trying to keep up with her older siblings. JJ, Patrick, and Meghan knew about sex, drinking, pot, everything before she did, and her ignorance made her feel stupid. And it was particularly difficult following Meghan. Katie spent most of her childhood faking what she knew, hiding what she didn’t.
“This feels a little like truth or dare,” she says.
Truth: Find out whether she is going to get Huntington’s disease or not.
Dare: Live without knowing, wondering every other second whether she already has it.
She never liked that game. She still doesn’t want to play it. Eric nods, seemingly impressed and contemplative, as if this comparison had never occurred to him before.
“Tell me,” he says. “What would it mean to find out you’re gene negative?”
“Uh, that would be amazing. Biggest relief ever.”
Duh.
“How do you think it would affect your relationship with JJ?”
Oh. The lightness from her imagined, obvious relief drops into an unliftable weight in her lap.
“And what if his baby has it?”
“He’s not finding out.”
“In eighteen years, his kid can get tested. What if your niece or nephew is positive? How will that be for you?”
“Not good,” she says, lowering her head.
“What if Meghan and Patrick are positive, and you’re negative?”
“Jesus,” she says, leaning forward to knock three times on Eric’s desk. “Why are you painting the worst possible picture?”
“You said being negative would be the biggest relief ever. See how it’s not that simple?”
“Yeah, I see it.”
Thanks a fuckin’ lot.
“What would testing positive feel like?”
“Rainbows and kittens.”
“How would you handle it?”
“I wouldn’t jump off the Tobin, if that’s what you’re getting at.”
This is getting too intense. She squirms in her seat. Eric notices. Fuck this. This isn’t mandatory. She can get up and leave anytime she wants. She doesn’t have to be polite to Eric. She doesn’t have to care what he thinks. She doesn’t have to see Eric ever again.
“So, what would you do? Would anything in your life change?” he asks.
“I dunno. Maybe.”
“You in a relationship?”
She shifts to the edge of her seat and eyes the door.
“Yeah.”
“What’s his name?”
“Felix.”
“Does Felix know about this?”
“No. I don’t want to lay it on him until I know what’s what.”
“Okay.”
“Don’t judge me.”
“No judgment here. Let’s make it more abstract. You want to get married someday?”
“Yeah.”
“Have kids?”
She shrugs. “Yeah, probably.”
“What if you’re HD positive?”
She thinks about JJ and Colleen. She doesn’t know whether she could’ve made the decision they made, whether she would’ve kept the baby. But Katie can find out before becoming pregnant. She could do that in vitro thing where they test the embryos for the mutated HD gene and only implant the embryos that don’t have it. She could have Huntington’s and have babies. It’s not exactly chocolate and peanut butter, but she could make the combination work.
Or not. Felix doesn’t deserve to sign up for a wife who is destined to get this hideous disease. He doesn’t deserve a wife whom he’ll have to take care of—feed her, push her in a wheelchair, change her diapers, bury her—by the time she’s fifty. She thinks of her mom and dad, and she starts picturing their immediate future. She squeezes her eyes shut for a second and clenches her teeth, chasing the images away.
Why should Felix be stuck with that kind of future, knowing it from the get-go? At least her parents have had twenty-five years together without knowing. No guy should have to be saddled with that kind of burden before even getting started.
A realization hits her hard, and an overwhelming urge to cry swells fast within her, filling to the top of her throat. She swallows several times, grinding her molars, holding it down. Maybe being HD positive would be the perfect excuse, irrefutable proof that she’s unlovable.
“I dunno. These questions are all way ahead of where I’m at anyway. You’re not married,” she says, as if accusing him of something. “You planning to?”
“I’d like to someday, yeah,” says Eric.
“How old are you?”
“Thirty-two.”
“Okay, so you could get hit by a bus when you’re thirty-five. Dead. Done. You still wanna make plans? You still wanna get married someday?”
Eric nods. “I understand your example, and you’re right. We’re all going to die. And who knows, I might get hit by a bus when I’m thirty-five. The difference is, I’m not sitting in someone’s office, asking a counselor or a doctor or a psychic to tell me approximately when and exactly how I’m going to die.”
Katie thinks of the last ghost in A Christmas Carol, the grim reaper pointing to Scrooge’s future gravestone. She never did read the book for English class like she was supposed to, but she’s watched various versions of the movie on TV every year at Christmastime. Scrooge in his nightgown and nightcap, shaking in his slippers, begging for a different outcome. That scene always scared the living shit out of her, gave her vivid nightmares when she was little. Now the nightmare is real, and the creepy ghost’s name is Eric Clarkson. He’s even wearing a black shirt. All he needs is a hood and sickle.
“I don’t get why I have to answer all these questions. It’s my business what I do with the information and how I’ll live my life. If I say the wrong answer, you gonna tell me I can’t find out?”
“There are no wrong answers. We’re not going to deny you the test. But we want you to understand what you’re getting into and have the tools to deal with it. We feel some responsibility for how you’re going to react.”
She waits. Eric says nothing.
“So what happens now?” she asks.
“If you still want to go ahead and find out, you can come back in two weeks or anytime after that. We’ll talk again, see how all this is sitting with you, and if you still want to know, I’ll walk you to the lab and they’ll draw your blood.”
She swallows.
“And then I’ll know?”
“Then you’ll come back four weeks after that, and I’ll tell you the result of the test.”
She does the math. Six weeks. If she goes through with this, she’ll know whether she’s HD positive or negative by the end of the summer.
“Can’t you just tell me over the phone?”
“No, it has to be here. In fact, we want someone to come with you for support, and not one of your siblings, because your news either way might be too hard on them given that they’re also at risk. I also wouldn’t recommend JJ or your father. Bring your mother or a friend.”
She wouldn’t bring her mother. If the news is bad, her mother would be more of a mess than Katie. She’d end up supporting her mother, not the other way around. The other possibili
ties are equally unappealing. Felix. Andrea. Another teacher from the studio.
“But no one outside our family knows about this. Can’t I just come alone?”
“I don’t recommend it.”
“But it’s not a rule.”
“No.”
She can’t imagine whom she’d bring, but it’s two appointments from now. Maybe by then she’ll have told Felix. Maybe she doesn’t want to know. Maybe she won’t even go through with this. A lot can happen in six weeks. If she gets to that last appointment, to the day of reckoning, she’ll either figure out whom to bring or come alone. She’ll cross that bridge when she gets to it.
Truth or dare, little girl. What’s it going to be?
CHAPTER 17
Outside Katie’s bedroom window, the day is flat, colorless, grim, a perfect reflection of her mood. She checks the calendar on her phone. Today is September 30. Katie could’ve gone to her second genetic counselor appointment two months ago, but she blew it off. Eric Clarkson just called. His voice mail was gently casual, as if coaxing a shy child hiding behind her mother’s leg, reminding her that he’s still there and available to talk if she’s still wrestling with the idea of genetic testing. He didn’t need to call. She thinks about Eric Clarkson probably more than she thinks about Felix, which isn’t good for many reasons. She knows he’s there and how to get in touch with him. She deletes the message.
She’s avoiding pretty much everyone right now—Eric Clarkson and her second appointment, her dad, JJ and Colleen, Meghan, the other yoga instructors, even Felix. She’s been going to three yoga classes a day, but she’s all business about it, getting in and out with as little eye contact and chitchat with the other yogis as possible. Her body is wicked kickass strong from all the exercise, but her mind has been completely disconnected from her practice. Her mind is junk.
She has no self-discipline, no control over her thoughts. They’re like big, hyper, untrained dogs chasing foxes into a dark forest, and she’s holding on to their leashes, tethered to their reckless decisions, being dragged everywhere they go. Meditation should take care of this. It should rein in the wild dogs. Heel. Sit. Be the fuck still. Good dogs. But she can’t seem to stay focused.