God, please help the scientists find a cure for HD so my children don’t lose their lives to this.
God, please let Patrick and Katie and baby Joseph be gene negative.
God, please let JJ and Meghan be cured, and let me live long enough to know they’ll be okay. Or, if there can’t be a cure yet, let them not become symptomatic until they’re much older.
God, please pray for Rosie. Don’t let me be too big a burden on her. Let her always feel loved by me. Please take care of her after I’m gone.
And lastly, God, if I’m not being too greedy, please let the Red Sox win the World Series, the Bruins win the Stanley Cup, and the Pats win the Super Bowl.
Amen.
Then he signs the cross, kisses his lucky quarter, and goes home.
“How ’bout this?” asks Joe. “I’ll pray for you and the kids. You pray for me. Just me. That way you don’t get overwhelmed, and everyone’s covered. I know I could use the help.”
Rosie shakes her head, unconvinced. “But why, Joe? Why would God do this to us?”
“I don’t know, hun. I don’t know.”
He pauses, wishing he had something wiser to offer. Where’s Katie with one of her damn inspirational yoga quotes when he needs her?
“Wanna put all the Jesus stuff back?” he asks.
“No,” she sniffles. “I can’t. It still feels like a lie.”
“Okay, that’s fine. We don’t need it. Snoopy’s still out there. We can pray to Snoopy. In the name of Snoopy, Charlie Brown, and the Holy Woodstock,” says Joe, crossing himself.
“Stop it, that’s terrible.”
“Or we could use Kermit. Holy Kermit, mother of Miss Piggy.”
“Stop. That’s ridiculous and blasphemy.”
“See, you still believe. Don’t lose faith, sweetie.”
Joe holds on to the edge of the bed and stands, groaning as his knees crack. He flings his arms wide open, inviting Rosie out of bed.
“Come with me. Let’s get you a cuppa tea.”
Rosie acquiesces. They walk together, listing and pitching, bumping off the hallway walls and each other’s hips. A drunk wife and a husband with HD. They make a fine pair. As they lurch down the hallway and finally make it to the kitchen, it occurs to Joe that this is the best anyone can hope for in life.
Someone you love to stagger through the hard times with.
CHAPTER 33
Joe’s physical therapist is a young woman named Vivian. Joe calls her Viv. She has bouncy blond hair, a big, easy smile on a pretty face, and a fit but feminine body that Joe finds pleasantly distracting. Joe knows by now not to be fooled by her girly-sweet appearance. Viv is tough as nails. She shows Joe no mercy, and that’s his favorite part about her.
Each week for an hour they work on balance and core strength and what Viv calls “gait training.” That’s fancy PT-speak for walking. Joe finds it more than a little demoralizing that he requires a paid professional to train him to walk. But alas, so it is.
He’s on the floor mat on all fours, in what Katie would call Table Pose.
“Okay now, hold your position while I push against you,” says Viv. “Ready? Resist me.”
Viv’s hands are on Joe’s shoulders, pushing him back while Joe’s leaning into her hands, exerting with his legs, core, arms, all of him, really. At first he’s steady, holding his Table, but he’s been through this drill too many times with Viv now to celebrate. While Joe’s giving it 100 percent, he knows Viv is probably only working at about 25.
“Okay, good job. Sit back on your heels and rest.”
She’s giving him a break in what Katie calls Child’s Pose.
“Arms stay outstretched.”
Viv massages Joe’s hips and then kneads the knots out of his neck. Her small, manicured hands are surprisingly strong. She goes to work on his trapezius next. Bless her. It feels so good to be touched, and he means that in the most respectful, non–sexually harassing way.
Rosie’s been avoiding him. He understands that close physical proximity to him can be dangerous. He might involuntarily throw a punch or his food or a cutting word, and any are likely to hit her where it hurts. He gets why she keeps a safe distance from him during the day. But she’s also sleeping upstairs at JJ’s every night now, taking care of baby Joseph so JJ and Colleen can sleep. She loves everything about being a grandmother, says she feels blessed to be able to help, that she wants to soak up every minute, even at three in the morning, because he won’t be a baby for long, but Joe thinks her sleepovers are also an excuse to be where Joe isn’t, that maybe she’s practicing, trying on a piece of her future. Whatever her reasons, missing Rosie is hard. Harder than PT.
“Okay, break’s over. Back onto your hands and knees. Let’s go again.”
Viv pushes harder into his shoulders this time, and Joe is quivering with effort. She seems to know his edge and backs off before Joe quits or loses. She returns him to Child’s Pose, and Joe reclaims his composure.
“Okay, last time. Back up you go.”
This is when she beats him. Just one of these weeks, he’d like to remain immovable against her best shot. Unfortunately, this isn’t in the cards for Joe. Despite all this physical training, he’ll continue to get less agile, less coordinated, weaker over time instead of stronger. He’s fighting a rising tide.
“Resist, Joe. Come on. Give it all you’ve got. Hold me here, Joe.”
He’s squeezing and leaning and pushing with all his might, sputtering and grunting, and then, as predicted, Viv forces him back onto his heels. Defeated again. Score: Viv 52, Joe 0.
Next, he’s standing and joined by another therapist, George. George is also young and physically fit, which must be a job requirement. He’s bald with a goatee, which makes him look angry whenever he’s not smiling, and he has the most muscular forearms and biceps Joe’s ever seen. The dude is Popeye.
Viv stands in front of Joe, and George positions himself behind. More games of Knock Joe Over. PTs are sadistic. Viv will catch Joe when he falls forward, George will catch him when he falls backward, and it’s whoever calls it when Joe falls to the right or left.
“Lift your right foot off the ground and hold it,” says Viv, stretching her arms out like airplane wings.
Joe mirrors Viv’s arms and lifts his leg probably only an inch off the ground, but in Joe’s mind, he’s the Karate Kid. Viv counts.
“One, two. Try again. One, two. Again. One, two, three. Okay, other side.”
Joe lifts his other leg for a similar and loathsomely inadequate number of seconds before losing his balance. He hasn’t made it past “three” in weeks.
“Now resist my hands,” says Viv, standing in a lunge with her arms extended and her strong hands pressing against Joe’s hips. “Don’t let me move you from where you’re standing.”
He’s no match for her on this one from the first try. He steps back. They go again. He steps back. They go again. He looks down at her young, ripe cleavage as she pushes. He steps back. One more time. He’s off balance but doesn’t step back. He’s falling over and scared for about a half second before George, his human safety net, catches him.
“Thanks, man,” says Joe.
“Anytime,” says George.
Joe studies his reflection in the mirror. It was one year ago this week that Joe was officially diagnosed with Huntington’s. He’s disheartened, noticing how much his body has changed in a year. Before HD, Joe’s shirts were always tight on him. He had a broad, muscular chest, thick traps, biceps that stretched the sleeves of his shirts, and probably an extra ten to twenty pounds around his middle. He’s only five foot nine, but he was big for a little man.
He’s lost the fat around his middle, but his gut now protrudes out like a toddler’s belly with no abdominal strength to hold it in. He’s also lost muscle mass in his pecs, biceps, traps, everywhere. He’s a sk
inny, short, weak, middle-aged guy with a slouched posture who was just easily beaten by a girl.
He could be the “after” photo in a diet commercial, but not quite. No one’s saying, “Hey, Joe, you look great!” HD isn’t a weight-loss plan like Jenny Craig. He looks shrunken, a bit wrung out, flaccid, the beginning of bony, sickly.
“Okay, Joe. Have a seat,” says Viv. Viv, George, and Joe all sit on the blue floor mat, facing one another like kids. “Before we wrap it up for today, is anything else going on?”
“Nope.”
“Rosie tells me you’re slurring some of your words.”
“Oh, yeah, I guess.”
Viv nods. “Okay, let’s do a few things real quick. Stick out your tongue for me and keep it out. Yup, but keep it out. Nope, it went back in. Out. Stick it back out. Your tongue’s a shy little guy. There, hold it there. Now move it to the right, now the left. Back to the right. Hmm.”
Well, that felt ridiculous, and from the sound of Viv’s “Hmm,” he failed the tongue test. Physical therapy doesn’t exactly beef up Joe’s self-esteem.
“Hold on,” says Viv.
She trots over to her big bag of tricks, where she keeps her stash of squeeze balls, elastic bands, and probably her whips and chains. She returns to the mat with a red lollipop.
“Okay, Joe, suck on this.”
She opens her mouth, a request for Joe to follow suit. He does, and she inserts the lollipop into his mouth.
“Don’t let me pull it out, okay?”
Viv pulls on the stick, and it slides without stopping right out of Joe’s mouth.
“Let’s try again. Don’t let me take this out. Good. Good.”
And then Viv is sitting there with a red lollipop in her hand.
“Let’s do it again.”
Viv slides the lollipop into Joe’s mouth. This time, Joe cracks the candy with his teeth and chews. Viv pulls out a popless stick. Joe smiles. Viv shakes her head.
“What am I gonna do with you?” she asks.
“You’re the mean lady taking candy from a baby,” says Joe.
“Get some lollipops and do this with Rosie at home. It’ll help to strengthen your mouth and jaw muscles, and should help with the slurred speech. Sound good?”
“Will do.”
“Okay. Before you go, I think it’s time we talk about getting you a walker.”
“Nah, nah. I told you not to use any w words with me. It’s not becoming language for a young lady like yourself.”
Joe knew the w-word conversation was coming. This is how Viv has ended his previous two sessions. At this point, w is for walker. Later, w will stand for wheelchair. Joe hates the letter w.
“Unless you want to talk about Vince Wilfork,” says Joe.
“We have to think about your safety. The falls are—”
“No big deal. You fall, you get back up. ’Tis part of life, my dear.”
Viv shakes her head, patient but frustrated with him. She’s pushing this walker thing on him pretty hard, but for now, he’s still able to resist.
“Okay,” she relents. “But you’re not going to be able to avoid the w word much longer.”
A win for Joe. W-word conversation: Viv 0, Joe 3. Joe smiles, savoring his one and only victory of the day. Even the small ones count.
KATIE WALKS INTO the lobby of the Spaulding Rehabilitation Hospital, and her dad is already sitting in the waiting area, done with his physical therapy session. She would’ve been on time, but she had to circle the Navy Yard a few times looking for a space, and then it took about ten embarrassing minutes to parallel park the damn car. He’s watching the TV mounted on the wall and doesn’t see her yet, and she pauses before approaching him.
He keeps adjusting in his seat as if trying to get comfortable, but he never does. He’s in perpetual motion. His head glides around on the axis of his neck, tilting, nodding, swaying, as if someone loosened the screws connecting his skull to his spine. His limb movements begin as random but usually develop into a pattern, something close to a steady rhythm if she watches long enough. Heels up, heels down, toe tap, heels up, heels down, toe tap, toe tap, shoulder shrug, arm fling, eyebrows raise, heels up, heels down. He’s boogying to music no one else on the planet can hear.
His facial contortions are the hardest for Katie to witness. They make him seem disturbed, and she’s ashamed to admit that at times she has to remind herself that he’s not. Even though she knows the reason behind the grimaces and facial twitching, they’re off-putting. Strangers must assume he’s dangerous or deranged or drunk.
That’s why he wears the T-shirts. The guy who makes the TOWNIE T-shirts printed up a dozen for her dad for free. Her dad won’t wear anything else now. Since JJ told the guys at the firehouse about his gene status, they have no reason to keep HD locked up in the closet. And so with JJ’s blessing, her dad is on a mission to educate the world, or at least the good people of Charlestown. Gray with navy blue lettering across the center of his chest, each shirt reads:
THIS IS HUNTINGTON’S
Learn more at HDSA.org
or ask me
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.
“Ye
ah, 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.