“That guy.” JJ points to a bloated, middle-aged, balding man panting and lumbering up the steps. His ankles are thicker than Meghan’s thighs. “Three Big Macs away from a heart attack. Dead before the ambulance gets him to the hospital.”
“Supersize suicide,” says Patrick. He and JJ high-five. JJ passes the bottle to Katie.
Katie spots a woman about her age toward the bottom of the hill, lying on a beach towel, boobs up in a red bikini, brown skin glistening with oil. Even in the shadow of the monument and slathered in SPF 50, Katie is paranoid about burning.
“Her,” says Katie, pointing to the woman. “Skin cancer. Twenty-six.”
“Good one,” says Meghan.
“Aw, don’t off the hotties,” says Patrick.
“Too bad she’s wasting the few years she’s got left with that clown,” says JJ, nodding to the dude lying on the towel next to the girl. He’s wearing checkered shorts and no shirt, a black, hairy carpet covering his flabby, pale torso, navel to neck.
“Eh, he’ll be dead in a week. Dumb-ass veers his Prius into an oncoming semi trailer. He was texting LOL,” says Patrick, taking the bottle from Katie.
Meghan laughs. It’s a horrible, morbid game, and they should stop or at least not think it’s so funny. They’re all going to hell for sure.
It’s weirdly comforting, though. They’re all going to die. Everyone on this hill. The tourists, the Toonies, the fat guy, the girl in the bikini and her hairy boyfriend, that young mother pushing a stroller, her cute little baby. Even the O’Briens.
So they might die of Huntington’s disease. So what? Did they really think they were immortal, that they’d get out of this life alive? Everyone dies. Yet Katie’s been living blindfolded to this immovable fact, as if by not looking she might escape her ultimate demise. Or, yeah, sure, she’s going to die, but not until she’s like eighty or ninety and wicked old and has lived a full, amazing life. She’s been overwhelmed and distracted for the past month, fretting about the possibility of getting Huntington’s when she’s thirty-five, dead before she’s fifty. Dead before she’s done. Patrick passes the bottle to Meghan.
“Paul Revere over there,” says Meghan, referring to one of the actors. “Holds his musket up too high on the hill during a thunderstorm, gets struck by lightning.”
The actor’s sweaty face is fixed in a hard scowl. He’s leaning on the barrel of his fake musket as he spits on the ground. Families walking past him loop away, steering clear. He’s not earning his Academy Award today.
“At least he dies doing what he loves,” says Katie, laughing.
Just for fun, she recently checked the statistics. A person’s lifetime odds of being struck by lightning are one in 126,000. Chance of drowning is one in a thousand. Dying in a car accident, one in a hundred. Dying of cancer, one in seven. Their odds of dying of Huntington’s, one in two.
“See that guy,” says JJ, aiming his chin at an old man shuffling along the sidewalk, shoulders slumped forward, head hanging down as if his neck quit its full-time job, overgrown greasy gray hair beneath a worn Red Sox cap and a gnarly beard, smoking a cigarette. “He’s gonna die in his sleep in his own bed when he’s ninety-five, surrounded by his loving family.”
“Totally,” says Meghan, cracking up, handing the bottle to JJ.
Katie shakes her head. “So unfair.”
“Fuckin’ pisses me off,” says Patrick. “God gives our dad Huntington’s and lets that asshole stick around.”
They all go silent. JJ takes an impressive swig and pushes the bottle to his brother.
“So I looked into getting the test,” says JJ. “It’s not just simply giving blood. It’s a friggin’ long, drawn-out saga. They make you go to two touchy-feely psychobabble appointments with a counselor spread out over two weeks before they’ll draw your blood, and then you have to wait another four weeks before they’ll tell you your results.”
“You mean you gotta talk to a shrink?” asks Patrick.
“Yeah, basically.”
“About what?”
“The weather. Huntington’s, you moron.”
“Yeah, but what about it?”
“They want to make sure you understand what it is, what the test means and why you want to know, how you’ll handle knowing, so if it’s positive you don’t go and jump off the Tobin.”
“Doesn’t sound like a bad idea to me,” says Meghan.
“Yeah, so what?” says Patrick. “What if I say, ‘Yeah, I want to jump off the fuckin’ Tobin,’ they gonna deny me the test? It’s my life. I have a right to know. I’m not doin’ any of that counseling bullshit.”
“Then they won’t give you the test,” says JJ.
“Fuck ’em, then. I don’t want to know anyway,” says Patrick.
Maybe knowing she’s going to get Huntington’s would be a positive thing. Instead of years tumbling by one after another, same old drill, procrastinating on her bucket list because she thinks she has plenty of time to do it all, forever, she’ll know for sure that she doesn’t. Do it now. All of it. And then the next fourteen years would be awesome, better than most people’s fifty.
Or maybe it wouldn’t be such a good thing. Maybe she wouldn’t move out of Charlestown and open her own studio or get married and have kids because they’d deserve a wife and mother who would be alive to love them and teach them and so why bother with any of it if she’s going to be dead so soon? She’d be dying every day for fourteen years instead of living.
Katie imagines a time bomb ticking away inside her head, already set to a particular year, month, day, hour. Then boom. Huntington’s will explode inside her skull, blasting the parts of her brain in charge of moving, thinking, and feeling. Moving. Thinking. Feeling. What else is there? Her yoga training tells her being. There is being. When she meditates, the goal is to not move or think or feel. Just be. This is exactly the elusive state that every yogi aspires to experience. Get out of your head. Quiet your thoughts and silence your movements. Notice your feelings but don’t attach to them. Let them pass.
But Huntington’s isn’t the absence of moving, thinking, and feeling. This disease is not a transcendental state of bliss. It’s a complete freak show—ugly, constant, unproductive movements, uncontrollable rage, unpredictable paranoia, obsessive thinking. The boom doesn’t obliterate moving, thinking, and feeling. It fucks them all up. She imagines the detonation releasing some kind of poisonous liquid, a steady leak of toxins that eventually seeps into every nerve cell, polluting every thought, feeling, and movement, rotting her from the inside out.
Maybe she already has it. The pamphlet says symptoms can begin fifteen years before diagnosis. So, like now. She wobbled yesterday in Ardha Chandrasana. Half Moon Pose. Her outstretched arm and leg waved around like branches blowing in a hurricane. She leaned left and then compensated right and then stumbled out of the pose in front of the whole class. Was that Huntington’s?
Or maybe she doesn’t have it. She’s totally fine, and she just lost her balance for a moment like any normal person, and all of this obsessive worrying is for the birds.
Or maybe she does have it.
Over the past many months, Katie’s felt a growing impatience, as if riding a wave rising to a white, frothy crest. Everything she’s ever done has been in preparation for her real life, and she’s itching to get started. It’s time to begin. But just when she’s ready to really start living, is she going to find out she’s dying? Of course, everyone is dying. That’s the point of their sick little game. She knows this. But death has always been an abstract concept, an invisible ghost with no shape or texture or smell. Huntington’s is real. It’s a real death that she can picture, thanks to YouTube, and it has the shape of horror and the putrid smell of dread.
JJ looks exactly like their dad. The spitting image. He doesn’t even look related to their mom. He has their dad’s sleepy blue eyes, his stocky b
uild, his temperament, his pink and pasty-white freckled skin. Does that mean he also has their dad’s defective Huntington’s gene? Katie bears an uncanny resemblance to her grandmother, a woman she’s only seen in pictures. Ruth. The one who had Huntington’s. Katie has her Irish cheeks and freckles, the same thin copper hair and blunt, wide nose. She’s similarly thick-boned, framed with sturdy hips and swimmer’s shoulders. They both would’ve survived the potato famine for sure.
Meghan looks and acts more like their mom. Her nose is thinner and pointier, her face is less round, her hair is darker and thicker, her frame is petite. Meghan has their mom’s private nature, her patience and tenacity, her love of Broadway music and theater and, of course, dance. Patrick looks like both parents and neither. They don’t know where the hell he came from.
In the ways they can see, through external physical traits and personality, Katie and JJ come from their dad. Does this mean they also have his Huntington’s? Without a degree in genetics or any real knowledge to back up her conclusion, Katie assumes that it does. She inherited her dad’s ugly feet; therefore, she has Huntington’s. Tick. Tick. Tick. Boom.
“Is anyone else going to find out?” asks JJ.
“So you definitely are?” asks Meghan.
“Yeah. I gotta know. I have an appointment on Wednesday. And because of our circumstances, the baby, they’re accelerating the process. I’ll find out the results in a week.”
“Jesus, man,” says Patrick.
Katie’s vaguely numbing Jack Daniel’s buzz abruptly coalesces into a knotty ball of sickening fear in her stomach. Her mouth tastes sour. Their fun game is over. Nobody wins. This is real. Too real.
“I don’t even want to say this,” says Meghan, knocking the top of her head with the knuckles of her right hand. “But if you have it, does that mean the baby has it?”
“If I don’t have it, it ends with me. The baby’s fine. If I have it, the baby has a fifty-fifty chance, just like us. Colleen will be fifteen weeks when we find out. We can have an amnio to see if the baby has it.”
“And then what?” asks Katie. “If the baby has it, would Colleen have an abortion?”
JJ hangs his head over his knees and rubs his eyes with his hand.
“I dunno,” he says, his voice hollowed out. “Maybe. No. I dunno.”
“Ma’d have a stroke,” says Patrick.
“I know,” says JJ.
“I’m not even kidding,” says Patrick.
“I know,” says JJ.
“What does Colleen say?” asks Katie.
“She’s a basket case. She doesn’t want to even think about it. She doesn’t want me to get the test.”
“It’s gonna be negative, man,” says Patrick. “When do you find out?”
“A week from Wednesday.”
“Okay. You’re gonna be fine, the baby’s gonna be fine, Ma’s not gonna have a stroke,” says Patrick.
Katie and Meghan nod. Patrick knocks back a few gulps and hands the bottle to JJ.
“Course, the poor thing still might come out lookin’ like you,” says Patrick.
JJ punches Patrick’s shoulder and almost smiles.
“There’s another thing,” says JJ. “The counselor guy talked a little about juvenile HD. You can get this thing full-blown at our age. It’s rare, but when it starts young, it seems to be passed down through the father.”
Meghan goes weepy.
“We’re learning a new routine, and I’m having trouble with it. I keep messing up the steps,” Meghan blurts out as if confessing. “That’s never happened before. Never. And I keep falling off pointe.”
“You’re just stressed,” says Katie.
“What if I have it now?”
“You don’t.”
“Are you guys noticing anything?”
“No,” says Patrick.
“No, nothing,” says JJ.
“Promise?”
“Honest to God,” says Katie.
“Don’t worry, Meg. If anyone’s getting juvi HD, it’s me, right?” says Patrick.
“You don’t have juvi HD, you’re just an asshole,” says JJ.
“You could get the test and find out for sure,” says Katie to Meghan.
Meghan shakes her head. “I don’t think I can. I would probably jump off the Tobin.”
“Look at Dad,” says JJ. “He’s forty-four, and he’s doing okay. If you take the test, find out you don’t have it, then you don’t have to worry anymore. You’re free. If you have it, then okay. It is what it is. You worry about it in ten, fifteen years. They might have a cure for this thing in ten years, right?”
Meghan nods. “I don’t think I can do it.”
“Katie, what about you?” asks Patrick.
She sighs. Does she want to know? She does and she doesn’t. Of course, finding out she’s negative would be an awesome relief. But deep down, she’s pretty sure she has this thing. Yet without absolute, medical proof, she can still hope that she doesn’t. Knowing for certain that she’s positive would probably devastate her poor mom and dad. She’d probably have to break up with Felix. She glances over at the green girders of the Tobin.
Maybe she’ll just keep living “at risk.” Put that on your Facebook status. But who doesn’t live a life at risk? Her life is full of risk every day. Risk of failure if she opens her own studio, risk of failure if she doesn’t, risk of never fitting in if she moves to a place where everyone isn’t Irish Catholic, risk of not being loved by Felix, risk of not being loved by anyone, risk of burning in the sun, risk of being struck by lightning, risk of having HD. Every breath is a risk.
Or maybe she’ll go to the first two appointments, get those done and out of the way. Then if she decides she really wants to know, she can show up and find out the results of the test. A freakin’ test.
The idea of taking the genetic test itself, regardless of the outcome, makes her skin go cool and clammy. Katie hates tests. She’s never performed well on them. In high school, she’d study and care and even know the material cold, but then she’d panic when faced with all those typed and numbered questions. She’s a big-time choker.
The last exam of her senior year, a math test, she remembers celebrating after handing her completed paper over to her teacher, giddy and bragging that this would be the last test she’d ever have to take. Like the O’Briens, God has a sick sense of humor.
That last math test was on statistics. She got a C.
“I dunno,” she says. “Maybe.”
CHAPTER 13
Katie counted eleven red cars on the walk from Cook Street to Town Yoga. She’d tasked herself with this specific mission before she stepped foot onto the front stoop. How many red cars will you see from here to yoga? It’s an awareness exercise she likes. Reality depends on perspective, on what is paid attention to. Without attention to red cars, she probably wouldn’t have noticed any on her walk. But with an awareness to red cars held in her consciousness, she experienced eleven.
She’s been trying to remember how far back her dad’s weird fidgeting and clumsiness goes. A year maybe. It’s hard to say. It’s like asking her how many red cars she saw on the way to yoga yesterday. None. She wasn’t looking for red cars, so in her experience, there weren’t any.
A month ago, she didn’t notice whether her dad dropped the remote control or his fork. She didn’t register any ticks or weird fidgeting. Now she sees it all, and everything she sees is called Huntington’s.
It’s an hour before class. The studio is empty, quiet but for the whispered dialogue of this familiar space—the whir of the ceiling fan, the hum of the heater, the whistle of her breath. She’s alone in the room, the lights dimmed, sitting cross-legged with her knees anchored to the floor, her tailbone propped up on a bolster, studying herself in the mirror, hunting for Huntington’s.
She focuses on her eyes. Blink.
Blink. A black outer ring surrounding blue surrounding a black hole. She searches her eyes. They’re steady, even. This is where she sees it most in her dad. His eyes are antsy, often darting off to some distant spot, at nothing in particular. Or he’s looking at her, but he’s not, the focus of his gaze slightly off, fixed in an odd stare. Huntington’s disease. If she looks for it, she can find it in his eyes.
Blink. Blink.
She has stubby eyelashes. Meghan’s are thick and long. She wonders if she’ll ever look at herself in a mirror and not wish she looked more like Meghan. She notices that her eyebrows are crooked. God, has she really been walking around like this? She resists the impulse to pop up and fetch the tweezers from her purse. An angry pimple is ready to erupt on her chin. She denies the urge to poke at it. Freckles. Short, fat nose. No makeup. This is her naked face. No mask. No hiding. Here she is. Can she see HD in her face?
Her dad’s eyebrows jump up a lot, as if he’s surprised by something someone said. Only no one said anything. The corners of his mouth will sometimes pull into a grimace, but he’s not actually disgusted or in any kind of pain. It’s an expression that flashes randomly with no emotional cause or content. Her misshapen eyebrows lie still, two caterpillars sleeping soundly on her forehead.
Her hands are resting on her thighs, thumbs and index fingers touching in a Guyan Mudra. She’s wearing two bracelets on her right wrist. One is a jade mala she uses for chanting mantras. Her favorite is Om Namah Shivaya. I bow to my inner, true Self. I invite positive transformation. The second bracelet is made of jasper beads and faceted with a single wooden skull. The skull represents the impermanence of all things, a reminder to be grateful for the gift of today, because there might not be a tomorrow. When she bought that bracelet only a year ago, she couldn’t have imagined how freakishly relevant and morbidly real this concept would be for her. She glances down at the skull. It used to prompt her to think about her dreams, a reminder to chase them down. She won’t be here forever. Now she thinks of her dad. And forever just got a whole lot shorter.