THIS IS HUNTINGTON’S
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He came up with many more HD slogans and wanted to have a whole line of T-shirts made, but her mom put a stop to it. Most of them were definitely not PC, and her mom said being seen in public with him is hard enough without him wearing an offensive shirt. Katie thought some of them were pretty hilarious.
I have Huntington’s disease. What’s your excuse?
This is my brain on Huntington’s
Life is Good but Huntington’s Sucks Ass
You are staring at a man with Huntington’s disease
Fuck you. This is Huntington’s.
She walks over to him now. “Hey, Dad, you ready?”
He slaps his thighs. “Yup. Let’s go!”
Katie holds the door open for him as they leave the building. It’s an exceptionally warm afternoon, in the midsixties, a freakishly rare thing for March in Boston. Katie points her face up to the sky and closes her eyes, feeling the sun touch her nose and cheeks. The heat makes her smile. She’s had enough of this winter. But she knows today is more of a cruel tease than an actual preview. No one in Boston is putting away hats and gloves and winter coats yet. It could snow a foot tomorrow. The pink and white blossoms Katie loves won’t burst open for at least another month. She keeps her head tipped for another few seconds before beginning to worry about sunburn. She’s not wearing any SPF.
Her dad inhales and smiles. “What a day! You in a hurry to get anywhere?”
“Nope.”
“Wanna go for a walk?”
“Sure.”
Walking with her dad is stressful. The whole reason she drives the car to pick him up from physical therapy is to avoid walking with him. But who can resist this day?
She wants to be close enough to catch him if he starts to fall, but not close enough to catch a flying fist in the face. She gives him a fairly wide berth. She won’t take her eyes off him while he walks, but he’s frightening to watch. Every joint—his ankles, knees, hips, elbows, wrists, fingers, shoulders—is overly involved in the task. Each step is exaggerated, jerky, wild, almost violent. She finds herself holding her breath the way she imagines a mother does when watching her baby taking those first uncertain, wobbly steps. It’s a miracle he doesn’t fall. And then he does.
It happened too fast for her to react in time. She thinks he dragged the toe of his sneaker, and then he was flailing, his legs running to catch up with himself, like a cartoon character. And now he is sprawled out, facedown, spread-eagled on the sidewalk, and she’s just standing over him, stunned even though she was expecting this to happen, stupidly doing nothing.
“Dad! Are you okay?”
She rushes to him now and crouches down. He pushes himself up to sitting and wipes sand and gravel from his hands and arms.
“Yeah, I’m all right.”
Katie checks him over. No blood. Wait.
“Dad, you’re bleeding,” she says, pointing to the middle of her own forehead.
He dabs his forehead with his fingers, sees the blood, then wipes his head with the bottom half of his T-shirt.
“Just a little cut,” he says.
It’s more than a little cut.
“Hold on,” says Katie.
She rummages through her pocketbook.
“I have a Band-Aid, but it’s Hello Kitty,” she says, holding it up, assuming he’ll refuse it.
“Okay,” he says, absorbing more blood with the bottom of his shirt. “I don’t think I can look any more ridiculous.”
Katie peels open the Band-Aid and gently places it over the gash, sticking it to her dad’s forehead. She looks him over. Scraped palms and elbows, bloodstains all over his T-shirt under THIS IS HUNTINGTON’S, a Hello Kitty Band-Aid taped to the middle of his forehead.
“Yeah, you look a little more ridiculous,” she says, smiling.
Her dad laughs. “Frankly, my dear, I don’t give a damn. Let’s walk to that park over there.”
They walk to the Massachusetts Korean War Memorial, and her dad chooses a bench. The benches are arranged in a circle, a hexagon actually, she realizes as she counts the six pillars defining this space. The names of the Massachusetts soldiers who died in the Korean War are inscribed on each pillar. Other names are inscribed in bricks along the pathway, still others in the marble benches. In the center of the hexagon stands a larger-than-life bronze statue of a soldier outfitted in rain gear.
Katie didn’t even realize this was here. Most Townies ignore the historical stuff in Town. They don’t climb the Bunker Hill Monument or take the tour of the USS Constitution. Her mom says she went on Old Ironsides for a school field trip in second grade, but she doesn’t remember it. The monument is tall. The boat is old. Good enough.
She and her dad sit side by side a safe distance apart and say nothing. The sunlit marble bench feels pleasantly hot against her palms. A sparrow hops past their feet on the bricks and skitters off into the grass. She hears children’s voices sailing through the warm air, presumably from a playground she can’t see.
As she does whenever she has free time to think, she imagines the results of her genetic testing, printed and waiting for her on a piece of paper sealed in a white envelope in Eric’s office. What’s written on that piece of paper? She always begins with imagining that she’s gene positive.
I’m sorry, Katie, but you will get Huntington’s disease, just like your grandmother, father, JJ, and Meghan.
And then she begins believing that scenario, her mind readily running with it. A twenty-two-year-old girl tests gene positive for HD. A tragic tale. Her mind loves those.
She imagines the possibility of being HD positive many times a day. Yes, her mind says. Yes, you are. And even though she knows the story is only a possibility, a thought created by her mind that isn’t real, the fear that the thought elicits is taking on a physical form inside her. The fear she carries is heavy, so heavy, and she’s powerless to let it go.
She carries her heavy fear to yoga class and to bed with Felix. She stuffs the fear deep inside, but lately, it feels like there’s no more room. She’s a suitcase filled to capacity, yet every day she thinks about testing positive, and so there’s more fear to carry, so she must stuff more inside. She must.
The tears are always right there, ready, but she holds them in. She holds everything in. She’s pretty sure that she soon won’t be able to zip herself shut. The fear is crowding her out. Every time her lungs expand, each time her heart beats, they bump up against the fear inside her. The fear is in her pulse, in every shallow breath. The fear is a black mass in her chest, expanding, crushing her heart and lungs, and soon she won’t be able to breathe.
For a split second every morning, she forgets. And then the black heaviness is there, and she wonders what it is, and then she remembers. She probably has HD.
So she’s faking it through her days. Every cheery hello, every class she teaches, preaching about grace and gratitude and peace, every time she has sex with Felix, she’s an imposter going through the motions of civilized society, pretending everything is A-okay.
Hi, Katie! How are you? Good. I’m good.