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.
But he sticks with it, and the repetition is his friend. His muscles begin to predict what will happen next. He knows the choreography to this dance. Katie seems to sense this, and her cues start to focus more on the breathing.
“Inhale, arms up. Exhale, Forward Fold. Inhale, Halfway Lift. Exhale. Inhale.”
And then, something magical happens. Moving moves to the background. Joe becomes a breathing body that happens to be moving. He’s breathing slow, steady, long inhales and exhaling through his nose, just like Katie taught him, and he finds a stillness within the moving. He’s in the zone. No more ants. No more falling. The bad guys who commit chorea have fled the city.
He’s had five privates with Katie now, and this is the first time he’s experienced this kind of moving stillness, this momentary waking pause from chorea. He used to have to run the Forty Flights to the point of exhaustion, falling on the steps over and over, skinning his knees and elbows and hands, becoming a bloody mess before chorea waved its white flag. This is better. And a whole lot safer.
After the Sun Salutations, they move to the floor. Three Cobras. Two Locusts. And then Bridge. He dreads Bridge. He lies on his back, feet planted, knees bent, and, on Katie’s cue, presses his hips to the sky. Or least up a bit.
“Hold the pose, not your breath. Stay here for ten.”
Joe’s legs tremble. His throat feels constricted, thin. He squeezes his face and grunts, sputtering his breath. He tightens every muscle he can find, fighting to keep his ass off the ground, to stay in the pose, to stay in the fight.
“The pose begins when you want to get out of it. Quiet your reactions. Quiet your thoughts. Quiet the struggle. Witness and breathe.”
Joe finds his face first and unclenches his jaw. He breathes and mindfully relaxes everything but his feet, which he pushes into the ground. He watches his stomach rise and fall. Rise and fall. And here he is, almost comfortable in Bridge.
Stay in the Fight worked for Joe as a patrol officer. It’s even worked for Joe at times as a husband and father. But it doesn’t quite work as a man with HD. Stay in the Fight is a struggle. It’s war. Despite the Seroquel and his inadequate dose of Tetrabenazine, he still exhibits chorea, loss of coordination and proprioception, OCD, paranoia, impulsivity, anosognosia, wild swings in mood with an unconscious predilection for anger, and dysexecutive syndrome. And slurring. The slurring has started. He has no real weapon to fight HD. He’d never admit this to Donny or Tommy or any of the guys, but maybe, instead of Stay in the Fight, his approach to HD should be to Stay in the Pose.
Katie mercifully cues Joe to release his Bridge. They move on to Seated Forward Fold. Happy Baby. Spinal Twist.
And finally, his favorite, Savasana. Dead Man’s Pose. The irony of this position’s name is not lost on him. Joe lies on his mat, his arms at his sides, his legs wide, feet splayed, eyes closed. Breathing. Letting go of all effort. Surrendering everything, allowing every pound of him to be held by the mat and hardwood floor beneath him, which feels in this moment somehow more comfortable than his bed mattress.
Sometimes Katie reads an inspirational passage from one of her yoga books while he’s in this pose, but today she says nothing. Without looking, he can feel her presence on her mat next to him. Joe breathes, not forcing or expecting anything, and he sinks in, releasing his body and thoughts, emptying out.
And in that empty space emerges an image of his mother. A memory. She’s in her shared room in the state hospital, sitting in a padded, reclined wheelchair, a white seat belt over her chest, a black seat belt tight around her waist. She’s wearing a short-sleeved blue shirt, swimming on her emaciated frame, a fluorescent-yellow paper bracelet sporting the words FALL RISK around her translucent wrist. Her wrists are pronated, her bony fingers curled and rigid.