Inside the O'Briens (16 page)

“At first I thought so, but now I dunno. I think knowing, either way, would give me some measure of control. Right now, the whole thing feels so completely out of control I can't stand it.”

“Yeah, you're kind of a control freak.”

“I get it from Dad.”

As soon as she says this, the blood drains from Meghan's face. Katie feels it, too, the cold terror in wondering what else they each inherited from their father.

“What about you? You think you'll get tested?” asks Meghan.

“I dunno. Maybe.”

“Have you told Felix about all this?”

“No.”

“I don't blame you. I can't imagine involving someone else in this shit. Poor JJ and Colleen.”

“I can't believe—”

“You know what? I can't even talk about this right now or I'll cry. I have to get ready.”

“Fine. You brought it up.”

But Katie would like to talk about it. She'd like to talk about JJ being HD positive, how she thinks of him differently now, as if he's someone who's already sick or damaged or even con
tagious, how she's kind of afraid of him, which is ridiculous, but she can't help it. She'd like to talk about Colleen and her pregnancy and how worried Katie is about the baby, that she can't believe they decided to keep it without having the amnio to find out whether it has the mutation. She'd like to talk about how scared she is of being HD positive, too, that she imagines HD like a seed buried deep inside her, already beginning to germinate, the first buds growing on a creeping vine, spreading throughout her entire body.

She'd like to talk about HD with Meghan, before Meghan's call time tosses her out of this small, chilly living room. But Meghan has returned to the needle and thread, and Katie wouldn't dare interrupt her. As it's always been, Meghan is the big sister, the driver of any conversation
between them, and Katie's the little sister, still not old enough to touch the wheel.

Meghan threads the needle this time on the second try. She exhales loudly. Katie watches as she stitches a pink ribbon to the inside of the arch. Still seated in a straddle split, Meghan's toes on her right foot point and flex, point and flex, up and down, up and down, while she sews. Katie's sure she's doing this on purpose, that she's seen Meghan do this sort of seated exercise many times before, but what if she's not? If it's an exercise, why isn't she giving her left foot a turn? What if moving her right foot right now isn't volitional, and she's not aware of it? What if it's HD? It's not. It can't be.

Meghan's foot continues to point and flex, and Katie stares in stupefied silence. Just two minutes ago, Katie promised to tell her if she saw anything suspicious. She'd have no problem pointing out spinach stuck between her sister's teeth, but she can't bring herself to mention the possibility of HD in Meghan's foot. Is this how it's going to go for all of them? She imagines Sunday suppers, everyone grimacing and fidgeting, bumping into each other and knocking things over, five giant
pink elephants squeezed into that tiny kitchen and no one saying one word about it.

Meghan lights the end of the ribbon, and her foot stops. Katie holds her breath, waiting for Meghan's foot to start up again, but it remains still. She watches Meghan go through the rest of the process without any questionable movements, disruption, or comment.

“What time is it?” Meghan asks, inspecting her shoes, satisfied with her efforts.

Katie checks her phone. “Three twenty.”

“Okay, I gotta go. I'll see you tonight.”

“Good lu—”

“Don't.”

“Sorry.
Merde
.”

“Thanks.”

Meghan gathers the needle, thread, scissors, and lighter, and off she goes.
Merde
. And they all think yoga is weird. Yogis would say
Namaste
, which means
I bow to the divine in you
. Actors would say
Break a leg
, which Katie agrees would be a particularly inappropriate wish for dancers. And Katie gets that saying
Good luck
is tempting fate. This is why she knocks on wood all the time. But
merde
makes no sense.
Merde
is French for
shit
.

Katie sits alone in the cold living room, aimlessly scrolling through her Facebook newsfeed on her phone. Andrea posted a video of Krishna Das chanting in India. Katie taps
PLAY,
and although her eyes stay focused on the screen, what she's really seeing is her sister's foot pointing, flexing, pointing, flexing, pointing, flexing. The green tea in her stomach turns, becoming a pool of hot sewage.

Merde
.

FELIX OPENS THE
door to his apartment wearing a Yankees T-shirt, white linen shorts, and a pleased smile of surprise.

“Hey, you're early. It's only seven thirty. What happened to your private?”

“She canceled last minute,” says Katie.

“I hope you charged her anyway.”

“Nah, it's okay.”

“Come on in.”

Katie kicks off her flip-flops, drops her bag at the door, and follows Felix into the kitchen. His apartment is central air-conditioned, and her bare feet feel refreshingly cool on the smooth tile floor. She sits on one of the bar stools while Felix pulls a bottle of white wine from the fridge.

“How's this?” he asks.

Katie nods. Ziggy Marley is playing on his iPod. She swivels in her seat to the music and fondles one of the red apples in the white ceramic bowl on the soapstone bar counter while watching Felix work the bottle opener into the cork, admiring his strong hands. He pours two glasses of wine and gives her one.

“Cheers,” he says, and they clink glasses. The wine is cold, crisp, tangy. Katie considers the wine and the elegant heft of the glass in her hand and would bet that what she's holding is worth more than what she would've earned tonight had she actually had a private scheduled.

“So it's early now. Should we go out for dinner?” he
asks.

“It's so hot out there. Can we just stay in?”

“Yeah. Good,” he says, sitting down next to her. “It's been a long week, and I don't really feel like venturing back out. I can make us a salad or we can order something.”

“Okay.”

“You look all ready to hit the town, though.”

She's wearing the sleeveless black dress that Meghan told her to wear.

“I'm all sweaty from the walk over.”

“Looks like you could still use that shower,” he says, smiling with those eyes so liquid brown she could bathe in them, and he leans over and kisses her.

She holds the back of his smooth, bald head with her hand and pulls his kiss deeper into her. His hands reach up under her dress, up her thighs, and his kiss reaches deeper, and she pulls his Yankees shirt up over his head and drops it to the floor. He does the same to her dress.

They're standing now, and she kisses his neck, tasting his bergamot soap and salty sweat, running her hands along his shoulders, down his arms, across his smooth, muscular back. She's kissed and touched and tasted every inch of him, and yet every dimple and crease, each scar and tattoo still feels intoxicatingly new. She unzips his shorts, and they fall off his thin hips to his ankles. He's not wearing any underwear. She wiggles out of her black thong, and he unhooks her bra.

They kiss and grab and hold each other, and Katie loses herself in him—the taste of white wine in his mouth, his hot hands, the bass of the music from his iPod thumping through her. He leads her by the hand to the bathroom. As Felix lets go of her grasp to turn the shower on, Meghan pops into Katie's consciousness, and for the slightest moment, a stone-cold guilty pang interrupts her libido, sickening her.

She couldn't go. She's holding too many secrets as it is—HD from Felix, her family from Felix, Felix from her family. She couldn't bear the possibility, the responsibility, seeing Meghan stutter onstage, a misstep, that right foot pointing and flexing when it shouldn't, because she knows she wouldn't have the guts to tell Meghan about it. And then she'd have yet another secret to carry, and her hands are already too damn full.

The glass door steams up. Katie steps into the shower, and Felix follows her. Hot water rains down on her head. Felix's
dark brown hands rub slippery, liquid soap on her ghostly white breasts. She inhales the sweet smell of citrus as Felix presses up against her from behind, and the fact that she's not at the Opera House with the rest of her family fades to an inconsequential footnote.

CHAPTER 16

K
atie and the genetic counselor are killing time, waiting for the neurologist. She pulls out her cell phone, hoping to absorb herself in some kind of mindless distraction. The battery's dead. Well, then. She tucks her phone back inside her bag and casually browses the room, attempting to avoid eye contact and the potential for any more pointless small talk, but there's not much to look at in here. The counselor's office is small and impersonal, not at all what she expected. For some reason, she'd imagined something similar to her high school guidance counselor's office, which was overly cheery, trying-way-too-hard-to-be-cool uncool. She remembers the fishbowl full of M&Ms, the antibullying and school spirit posters.
EVERY KID MATTERS. GO TOWNIES!
His collection of Bruins bobbleheads. The entire office was a forced smiley-face emoticon with exclamation points on every flat surface.

This place is definitely more subdued on the positivity front. The genetic counselor has his framed diploma on the wall. Eric Clarkson, MSW. Boston College. Next to the diploma is a Huntington's Disease Society of America
HOPE
poster. There's a tall, pink orchid in a pot on the windowsill and a framed photograph of a yellow Lab on his desk. She checks out his left hand. No ring. No wife or kids or even a girlfriend established or loved enough to own a spot in a frame in his office. Just a man and his dog and his pretty flower. No M&Ms. No
rah rah rah!

He's kind of cute. She tucks her hair behind her ear and wonders how she looks. In her rush to get here on time, which clearly wasn't necessary, she didn't put on any makeup. Now she wishes she had. Good God. How can she be sitting here, worried about how she looks? First of all, she has a boyfriend. Second, she's here to find out whether she has the gene for a fatal disease. He's a genetic counselor at the hospital, not some cute guy at Ironsides.

The door opens. A woman enters the room and says hello to Eric. She's wearing a white lab coat, glasses, and high heels. Her black hair is pulled into a loose bun. She reads whatever it says on her clipboard and then looks up at Katie.

“Kathryn O'Brien?” she says, extending her hand and shaking Katie's. “I'm Dr. Hagler. We're going to do a quick neurological exam before you begin talking with Eric, okay?”

Katie nods, but she's faking it. Wait, what? There's a test
before
the test? Her heart tightens.

“All right. Can you stick out your tongue for me?”

Katie sticks out her tongue. She watches Dr. Hagler's eyes studying her tongue. What is her tongue doing? Is her tongue doing something wrong?

“Okay, now follow my finger with your eyes.”

She does. Or at least she thinks she does. Shit. This is happening. She's being tested to see whether she's showing symptoms
now
. She feels blindsided, tricked. She remembers now that Eric mentioned something on the phone about a quick neuro exam, but the words went in one ear and out the other without registering. She conveniently ignored whatever that meant. She thought today would only be a preliminary visit, a conversation about whether she wants to find out if she's gene positive, whether she's destined to get Huntington's disease fourteen years or so down the road. This was an appointment with a
genetic counselor
, not a neurologist. Even as she and Eric sat waiting for the neurologist, it honestly never occurred to
her that a doctor would be checking her to see whether she's got this thing
now
.

“Hold your left hand flat, palm open, like this. Then, with your right hand, I want you to touch your left hand with a fist, then a karate chop, then a clap. Like this.”

Dr. Hagler shows Katie the sequence three times through. Katie copies her three times, doing exactly as the doctor did, maybe a touch slower. Does that matter? Is that bad?

“Now walk heel to toe over here in a straight line.”

Katie stands up, and the blood drains from her face. Her head feels airy, cool, dizzy. Her heart is beating too fast, panicking. She needs to breathe. She's not breathing. Breathe.

You can walk heel to toe, for God's sake. You can walk on your HANDS if she asks you to.

Katie walks across the room heel to toe with arms outstretched in a T, as if she's walking across a tightrope or being busted for an OUI. Dr. Hagler writes something down. Did she not nail it? Should she have had her arms down? Dr. Hag­ler continues with the exam, and each task makes Katie feel as if she's in big trouble, one wrong move away from a death sentence.

“Now name as many words as you can that begin with the letter
B
. You have one minute. Go,” says Dr. Hagler, looking down at her watch.

B
is for,
B
is for . . . Nothing. No words. Her mind is completely blank.

“Blank. Ball. Boston. Blood.”

Think. She can't think of any more words starting with
B
. What does that mean? Why didn't JJ warn her about this? She could've prepared, practiced. Man, she hates tests. This is bullshit.

“Bullshit.”

“Okay, time,” says Dr. Hagler.

That totally sucked. Katie's face is flushed hot, and her heart is beating as if she's in a full sprint. Beating. B. Damn it.

You don't have HD, but we did diagnose you with STUPID. Sorry, there's nothing we can do for that.

“All right, Kathryn. It was nice to meet you. I'm going to leave you now with Eric. Do you have any questions for me before I go?”

“Wait, uh, yeah. What just happened?”

“You had a neurological exam.”

“To see if I'm showing symptoms of Huntington's?”

“Yes.”

Katie examines Dr. Hagler's face, trying to discern the answer to the terrifying question blinking in her head like a neon sign without having to verbalize it. Dr. Hagler and her infuriatingly impassive face are standing by the door. Katie can't let her leave without knowing. Did she pass or fail? She closes her eyes.

“Am I?” asks Katie.

“No. Everything looks normal.”

Katie opens her eyes to Dr. Hagler's smiling face. It's the most reassuring, honest-to-God smile Katie's ever seen.

“Okay, then. Take care.” And Dr. Hagler is gone. Namaste.

Eric raises his eyebrows and claps his hands together.

“Shall we?” he asks.

She's not sure. To be honest, she'd really like to lie down. She's not showing any signs of HD. All that time studying herself in the mirror, tormenting herself over every nervous fidget, or that major full-body twitch she sometimes gets just before falling asleep, hunting for Huntington's. She can stop. She doesn't have it. For now. This is really good news. But that neuro exam was like surviving fifteen rounds in a boxing ring. She's been declared the winner, but she still got knocked around. She's not sure she's ready for anything more than a nap.

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
.