“Got ’em,” says Rosie, returning to the table, victorious, with a devotional candle in each hand.
The picture on the glass container of the first candle Rosie places on the table is of the Virgin Mary, Undoer of Knots. The second is St. Michael killing the devil with his spear. Rosie lights both candles with a single match, and the room isn’t noticeably brighter.
“How’s that?” she asks.
“Very romantic,” says Meghan.
“Maybe I should get a lamp from the living room,” says Rosie.
“Sit down, Ma. It’s fine,” says Katie.
Rosie acquiesces, delivers a perfunctory grace followed by a mumbled, collective “Amen,” and then supper begins. Joe watches Rosie passing a platter of lamb a bowl of boiled turnips, her movements all business, her hair still damp from a late-afternoon shower, her emerald eyes dull in the shadows cast by the Virgin Mary candle; her presence at the other end of the table feels removed. She probably wouldn’t speak to Joe for a week if she knew he was thinking this, but she looks much older than forty-four.
His HD is already wearing her down—the impending divorce, the episode and obsession with the gun, the holes in the walls, his constant calling and texting to check on her. She’s heartsick about JJ and Meghan and worried to distraction over Patrick, Katie, and baby Joseph. Plus she hasn’t been getting her beauty sleep. She’s been doing night duty three nights a week up at JJ’s, sleeping in their guest bedroom, ready with a bottle or a lullaby for baby Joseph whenever he wakes, giving JJ and Colleen a reprieve from the round-the-clock responsibility of caring for a newborn. On top of everything, she’s working thirty hours a week now, up from twenty, which she says is no big deal, but Joe can see that it’s all starting to take a toll on her.
JJ and Colleen keep disappearing from and reappearing at the table, bending down at the waist and popping back up, fussing over baby Joseph, who is sitting in a reclined, vibrating, oscillating seat on the floor. Neither JJ nor Colleen have eaten a bite of supper.
“He’s fine, you two,” says Rosie.
“I’m just adjusting his head,” says JJ.
Colleen wipes the smallest speck of white spittle from the corner of baby Joseph’s mouth with a blue cloth and then sticks a pacifier in it. He sucks the thing like a pro for a few seconds, but then he stops and the pacifier tumbles to the floor. JJ bends down and snatches the pacifier from under the table and is about to plug baby Joseph’s mouth again, but Colleen stops him with her hand.
“Don’t—it touched the floor. Hold on, I have another in his diaper bag,” says Colleen, taking the contaminated pacifier from JJ and sliding sideways out of her chair.
Meanwhile, baby Joseph seems perfectly content to Joe. The child might actually doze off if JJ and Colleen would leave him the fuck alone. New parents. Each generation has to learn for themselves.
“Where’s Felix?” asks Joe.
“Portland,” says Katie without elaborating.
“I thought he wasn’t going until June,” says Patrick.
Katie says nothing.
“He’s not,” offers Meghan. “He’s just there for the week.”
Katie keeps her eyes downcast, focused on eating her salad. Felix hasn’t missed a Sunday supper since the first time Katie brought him back in November. Joe likes the guy. He’s smart and ambitious, but he doesn’t seem to be a workaholic and doesn’t talk incessantly about his job. He’s still a fan of the Yankees, which is a problem likely to persist, but he’s watched the Bruins in the living room a few times now with Joe, and Joe caught him actually cheering for the Bs at least once, so there’s hope for him. Other than the Yankees, he doesn’t appear to have any objectionable vices. Felix was brought up Protestant, but Joe’s not holding that against him. He’s salt of the earth, not at all the pretentious Toonie Joe expected. He’s got good manners, and he treats Katie well. Joe can tell by the way Katie lights up whenever he’s in the room. Katie doesn’t resemble Rosie much, but something about her looks just like Rosie, especially when Rosie was young, whenever Felix is around.
Joe studies Katie eating her salad, her face drawn and heavy, the opposite of lit up, and a regret seeps through Joe like a poison. He’s basically ordered Katie to break up with this fine young man, a man she obviously loves, to protect Rosie. He looks at Rosie and the sledgehammered holes framing her exhausted face in the hallway wall behind her. He’s not exactly protecting Rosie from a damn thing. Why should Katie have to bear that burden? Life is too short, one of the many lessons HD is ramming down his throat, whether he likes the taste or not.
A moldy hunk of rock-hard potato suddenly lands in the middle of JJ’s plate with a crash that startles everyone.
“Jesus, Pat. Ma asked you to clean off the ceiling last week,” says JJ.
It’s getting increasingly improbable for Joe to transport food from a fork or spoon to his mouth without some HD spaz attack sending it elsewhere. His hand will twitch or his fingers will release the utensil or his arm will fling wildly, causing his food to go sailing onto someone’s face or shirt or the wall or the ceiling. Most of the food that hits the ceiling falls right back down, but Rosie’s mashed potatoes, which Joe has always said resembled glue, stick and stay there. Joe looks up. Globs of hardened mashed potatoes from previous suppers hang like stalactite chandeliers all over the ceiling.
“I forgot,” says Patrick.
“You didn’t fix the holes in the hallway walls either,” says JJ, who patched, sanded, and painted over the holes in the bedroom.
“I’ve been busy. I’m workin’ on it.”
“You’re not that busy, for Chrissake,” says JJ.
“I don’t see you doin’ anything around here to help.”
“I don’t live here for free, moochin’ off Ma and Dad. Least you could do is lift one of your lazy-ass fingers and help them out.”
“You don’t exactly pay real rent, and you have your own place.”
“You know what?” yells JJ, his face now an incensed shade of pink. “I have a wife and a baby, but I’ll do it. I’ll clean the ceiling and fix the rest of the holes, since you’re a totally worthless piece of shit.”
“JJ,” scolds Rosie.
“No, Ma. I’m sick of him not being held accountable for anything. You tell ’em your big news yet, Pat?”
Patrick says nothing, but his eyes are trying to murder JJ from across the table.
“You gonna tell ’em, Patty boy?”
“Shut the fuck up, JJ.”
“Language. JJ, stop it. Pat, what is it?” asks Rosie.
“Nothing, Ma. There’s no news. I’ll clean the ceiling after supper.”
“Oh, there’s news. Pat knocked up this girl he’s been shackin’ up with.”
The room goes heart-stopping silent. Joe stares at St. Michael killing the devil on the candle, and then, gripping his fork like a spear, he lifts his gaze to Pat. His son’s pale, freckled face. Pat’s sullen blue eyes. His slumped shoulders and messy hair the color of lightly steeped tea.
“Tell me that’s not true,” says Joe.
Patrick hesitates, then nods. “Least that’s what she says.”
“Who says, Pat? Who is this girl?” asks Rosie.
“Ashley.”
“Ashley who?” asks Rosie, her words overly controlled, her eyes closed. Joe guesses she’s praying to God for patience and the strength not to kill her son.
“Donahue.”
“Kathleen’s daughter?” asks Rosie.
“Niece,” says JJ.
“And why haven’t we met her?” asks Rosie.
Patrick shrugs. “We were just messin’ around. It wasn’t anything serious.”
“Well it’s fuckin’ serious now,” yells Joe, hot rage licking each word. “How can you be this totally fuckin’ irresponsible? Your mother gives you the goddamn rubbers, for Chrissake
, and you still get this girl pregnant.”
“You got Ma pregnant, and you guys were only eighteen.”
“And I did the right thing and married her. What if you have HD? Did you ever think of that? You might’ve just passed it on to some innocent baby.”
“No one yelled at JJ for maybe passing it on to his baby.”
“You shut your stupid fuckin’ mouth right now,” warns JJ. “I’m married, and I didn’t know about HD before my wife got pregnant.”
“Have you told her you’re at risk for HD?” asks Rosie.
“No.”
“You’re taking that test and finding out,” says Joe, pointing his fork at Pat’s head.
“No, I’m not.”
“That girl deserves to know,” says Joe.
“I don’t want to know. I’m not takin’ it.”
“You’re taking it, and you’re marrying her,” threatens Joe.
“I’m not. I’m not takin’ the stupid test, and I’m not marryin’ Ashley.”
“You have a responsibility to that young woman and your unborn child.”
“I can be the kid’s father without getting married. I don’t love her.”
Rosie stands. “I can’t take this anymore. I can’t do this,” she says, looking at Joe, avoiding Patrick, her voice vibrating high and hollow. She throws her napkin on the table and leaves. The bedroom door slams, and another piece of petrified potato falls from the ceiling, landing with a clunky thud on the table next to the Mary candle. Baby Joseph whimpers. Colleen picks him up and tries to soothe him with the pacifier, but he won’t keep it in his mouth. Meghan hugs her thick, gray scarf to her ears as if she’s trying to hide inside it.
“Goddamn it, Pat. How could you do this?” asks Joe above baby Joseph’s wailing. “How?”
Patrick says nothing. The hot rage swimming through Joe cools and coalesces into a dense helplessness that settles in his center. This disease is a fuckin’ plague, spreading, wreaking evil havoc however it pleases, and there’s not a damn thing Joe can do about it but witness the devastation. Pat is sitting there, arrogant and ignorant, making a bad situation worse, and Joe can’t stomach the sight of him.
Joe dumps his fork onto his plate and fumbles clumsily out of his seat, hurrying out of the dining room before his four grown children can see him cry.
CHAPTER 31
Joe’s been practicing yoga with Katie for a few weeks now. He dutifully takes what Rosie calls his “God-knows-what’s-in-’em pills” twice a day as part of a randomized, double-blind clinical trial. He signed up to participate in the HD Human Biology Project. He’s been praying in church for all of them, especially now for Patrick and his unborn child, asking for guidance, grace, and good health. Joe’s making real progress on the kitchen bar counter with the help of JJ, Patrick, and Felix. He’s even staying away from predinner beers and his gun. He’s doing his best with each day he has, mindfully showing his kids how to live honorably with HD.
But thinking ahead is where he gets muddled. The dying part. Any possible ending to HD sucks. Pneumonia. Starvation. Lingering as a barely living corpse until God finally, mercifully opens the pearly gates to heaven. What kind of honorable example can he provide his kids for how to die with HD? He can’t figure it out, and it scares the shit out of him, to be passively heading into a future where he’ll be completely out of control, vulnerable, and without a plan.
But he has time. As Katie would say, “You are either Now Here or Nowhere.” So today he is still here, living with HD, trying not to think about the dying part.
Joe and Katie are standing on their mats in the yoga studio. Katie’s leading him through a class she customizes just for him. A “private,” she calls it. She does this sort of thing on a regular basis for a couple of women, both Toonies. One is a world-famous doctor at Mass Eye and Ear who works long hours. Katie teaches her twice a week at 9:00 p.m. The other apparently can’t get to the scheduled group classes due to various conflicting weekly hair, nail, and therapy appointments, plus she doesn’t like to sweat in front of anyone, and paying for privates with Katie is really just so much simpler.
And then there is Katie’s client with Huntington’s disease. Her dear old dad. Joe and Katie are side by side, facing the mirror, which he’s learned isn’t the typical configuration for a normal class. Katie teaches everyone else from the front of the room, oriented toward the wall with the Buddha painted on it. But she’s placed Joe in front of the mirrored wall so he can see what his body is doing with his eyes. It definitely helps.
Most of the time, his mind’s eye, his sense of proprioception, is either asleep on the job or blindfolded. Add a dash of anosognosia, and he’s unaware of what he’s unaware of. He typically has no idea what his legs and arms and hands are doing or where they are in space until he falls down or crashes into a wall or hits someone or breaks something. Yesterday he went from sitting comfortably in his chair, happily watching the Bruins, to finding himself sprawled out facedown on the floor. He’s his own stuntman, the star of a slapstick comedy. Only the show ain’t so funny. Huntington’s has a sick sense of humor.
And it’s not just the chorea, anosognosia, and lack of proprioception that get him into trouble. The extraordinary and most often inappropriate force he’s able to generate without conscious awareness astounds everyone. Twice now, he went to lift the toilet seat to take a piss and tore the lid clear off. If only he could harness his superhero powers for good.
Katie stands at the top of her mat, her pale feet planted hip-distance apart, legs parallel. Looking in the mirror, Joe watches his similarly pale feet fidgeting, stepping on and off the mat as if he’s stomping on an invasion of ants. After Joe’s episode with the gun, Rosie tattled on him, and Dr. Hagler lowered Joe’s dosage of Tetrabenazine. There’s a black-box warning for depression and suicidal tendencies right on the label, affecting about 20 percent of those who take it. Fuckin’ brilliant. Depression is already a symptom of HD, yet another chocolate in a delightful boxed assortment. So let’s give people facing a brutal terminal illness who probably already exhibit depression a drug that can exacerbate that depression and cause suicidal ideation. That’s a great fuckin’ idea. But if Joe wants to treat his chorea, and he does, Tetrabenazine is the best and only thing they’ve got.
Joe likes to imagine Tetrabenazine as a pharmaceutical army of patrol officers chasing down the HD bad guys who commit chorea, catching, cuffing, and locking them up. So with less Tetrabenazine on duty now, Joe’s got more bad guys on the loose inside him committing heinous acts of chorea. He’s moving around a lot.
But Rosie’s happy with the trade-off. No more suicidal obsession with the gun. Joe would argue that it was Katie and not a drug adjustment that pulled him out of that dark hole, but Rosie’s too traumatized to hear anything about upping the dose again. They’re all just going to have to live with more chorea. More chorea, less gun.
The compulsion to check something remains, but Joe’s obsession with his gun has transferred to his phone. He texts Rosie probably a hundred times a day. The need to check on her and be sure she’s okay feels as urgent as the need for oxygen, and he suffocates while waiting for her to reply. So if she doesn’t return his text within a few seconds, he texts her again. And again. He knows he’s driving her nuts, but he can’t stop.
“Arms up.”
Joe copies Katie, and they are now moving “together” through something called Sun Salutations.
“Forward Fold.”
Katie swan-dives her arms, and her hands press flat on the mat, her nose to her knees. Joe’s arms flail down, and his fingers dangle in front of his shins, about a mile from the floor. Katie’s body is a jackknife. Joe is Quasimodo.
“Halfway lift.”
Already there, darlin’. Then Plank pose. The Push-up. Up Dog. Down Dog. As usual, they hang out here for a bit.
“Relax into the pose. Where can
you try less?”
Joe laughs. “There’s nothing but trying hard here, honey.”
Katie looks as if she could stay in this position forever, but Joe’s grunting and panting, blood flooding into his sweaty pink head, praying for Down Dog to be over.
Katie laughs. “You can be in Downward Dog, hating every second of it. Or you can be in this pose, peaceful and nonreactive, breathing calmly. Either way, you’re in this pose. You decide the quality of your experience. Be the thermostat, not the temperature.”
Wise words, but Joe’s wishing his lovely daughter would shut the fuck up and move them out of Down Dog. His arms are trembling. His feet are still busy annihilating invisible ants. He pushes hard into the mat with his hands, but his right hand does something the left hand doesn’t, and Joe collapses onto his stomach. He gets up onto his knees, wipes his nose with his shirtsleeve, and pushes back up into Down Dog.
“You okay, Dad?”
“Yeah. So what comes after Down Dog?”
Katie laughs again. “Step to the top of the mat.”
Joe lowers to his knees and crawls forward. Katie is waiting for him there. He stands.
“Arms up. Hands to heart.”
Amen.
They do it again. And again. Joe is huffing and wobbling, flailing and falling. Katie is graceful, fluid, strong. She makes it look effortless. Even without HD, Joe wouldn’t have looked anything like her. Every second for Joe is packed with sloppy exertion, his muscles straining, his brain scrambling to copy the shape of Katie, judging his every pitiful inadequacy. This shit ain’t for sissies.