“That’s exactly right, Joe,” says Dr. Hagler. “There’s real hope in the pipeline for HD, but we need people to participate in the research. I have the trial information here for you so you can both look it over and decide, and I strongly recommend it, and there’s also information on support groups. I encourage you both to talk to other people in the Huntington’s community.”
“So how fast is this going to go?” asks Joe. “I know you said ten to twenty years for the whole thing, but how soon before, you know?”
He’s thinking about his mother’s chronology, trying to do applied math. She was in Tewksbury for five years. Joe has eleven years until retirement. She died when she was forty, so she was thirty-five when she was first admitted to twenty-four-hour care. He’s forty-four now. The numbers spin in his head.
“This disease moves slowly. It’s not like flipping a light switch or like catching the flu and bam, you have it. You have time.”
“Jesus,” says Joe, raking his hands over his face. “I really thought I just had a bad knee and was maybe a little tired and stressed-out lately.”
“I’m sorry. I know this is a shock to you both, especially since you weren’t aware of your mother’s Huntington’s.”
Even though the doctor had told him his knee was fine, he’d still been imagining knee surgery as his worst-case prognosis. A couple of weeks off from work at the most with lots of rest, then back into the fire, good as new. Huntington’s wasn’t even in his vocabulary, never mind a possibility. Now it’s his reality. He can’t imagine the first step, never mind six, into this scenario. How many steps are there between now and Tewksbury State?
The fuzziness in Joe’s head has spread throughout his body. He’s numb all over. If Dr. Hagler placed a mirror in front of him right now, he knows what he’d see staring back at him—the flat, expressionless mask of a man in shock. He’s witnessed trauma on the faces of too many crime and accident victims, an unflappable exterior running on autopilot, an eerie antithesis to the unbridled psychological and physiological terror raging on the inside.
“What do I do about my job?”
“I think we should be realistically optimistic there. You don’t have to tell everyone yet, and I would advise that you don’t. You don’t want to get fired or denied disability. There are laws now to protect you, but you don’t want to spend the time you have in a court battle. I’d confide in maybe one other officer, someone you trust not to tell anyone and to be your mirror. This person can help you decide when it’s no longer possible for you to safely continue in your job.”
Joe nods. He’s scenario playing, and he sees all the less-than-desirable and immediate possible outcomes of disclosing his diagnosis. He can tell Tommy and Donny. No one else. Tommy knows how to keep a secret and play him with a straight bat when he needs it. Joe trusts him with his life. Same for Donny. No one else on the force can know, not until he figures things out. He needs to secure at least a partial pension so Rosie will be taken care of when he’s gone. Ten years. Maybe more. Maybe less.
But this is going to get worse. Falling down, dropping things, messing up his reports, showing up late, his weird temper. Slurring his words. Everyone is going to think he’s a drunk. Fuck it. Let them think what they want. Until he’s sure that Rosie will have what she needs, this disease is a secret.
Ruth O’Brien drank herself to death.
Like mother like son.
JOE AND ROSIE get home from MGH with plenty of time for Joe to join Donny and friends at Sullivan’s, but he’s feeling too fragile, transparent. He’s worried it would take only one Guinness to crack him wide open, and he’d be spilling his diagnosis all over Donny and the rest of the bar. No, he’s not going to Sullivan’s this St. Patrick’s Day. But he can’t stay home either.
Rosie’s at the kitchen sink, peeling potatoes. She’s stopped crying, but her eyes are still pink and swollen. She’s determined to put on a good face and look normal when the kids show up for supper. Joe and Rosie agreed that they need a little time before dropping the HD bomb on the kids. And Joe would never want to ruin their St. Patrick’s Day.
“I’m going for a walk, okay?” asks Joe.
“Where you going?” She spins around, a half-naked potato in one hand and the peeler in the other.
“Just out. A walk. Don’t worry.”
“How long will you be gone? Supper’s at four.”
“I’ll be back before then. I just need to clear my head. You okay?”
“I’m fine,” she says, and turns her back to Joe. He hears the flick, flick, flick of the potato peeler.
“Come here,” he says.
Joe places his hands on her shoulders, turns her toward him, and wraps his big bear arms around her back, pressing the slim length of her up against him. She turns her head and rests it on his chest.
“I love you, Joe.”
“I love you, too, hun. I’ll be home soon, okay?”
She looks up at him with her bloated face and heartbroken eyes.
“Okay. I’ll be here.”
Joe grabs his coat and walks out the front door, but before his feet hit the sidewalk, he stops and dashes back in. He dips his fingers in Rosie’s holy water and looks at the painted blue eyes of the Virgin Mary while he signs the cross. He’ll take all the help he can get.
On his way to the Navy Yard, he stops at the packie and picks up a bottle of Gentleman Jack. It’s not Glenfiddich, but it’ll do. As he hoped it would be, the Navy Yard is quiet and empty. There are no bars here since Tavern on the Water closed. The Toonies are all at the Warren Tavern, and the Townies are at Sullivan’s or Ironsides. His kids are all at Ironsides, Patrick behind the bar. And Joe is a lone Irishman in the Navy Yard, sitting on a pier, feet dangling over the edge, facing the beautiful city he’s loved and protected for more than half his life.
He woke up this morning just like on any other day. And now, just a few short hours later, he has Huntington’s disease. Of course, he had Huntington’s disease this morning before he went to see Dr. Hagler. He’s still the same guy. The only difference is in the knowing. The veil of the initial shock has lifted, and the knowing is beginning to fuck with his head.
Keeping the bottle of Gentleman Jack concealed in the brown paper bag, Joe unscrews the top and pulls back a generous swig and then another. It’s a raw, gray March day, in the low fifties but much chillier when the sun hides behind the clouds and the wind comes surfing in over the water. The whiskey feels like a glowing coal in his belly.
Ten years. He’ll be fifty-four. That’s not so bad. It could be worse. Hell, it’s more than anyone is guaranteed, especially a police officer. Every single time he’s dressed in blue, he knows he might not come home. That’s not just a noble sentiment. Joe’s been kicked, punched, and shot at. He’s chased after and confronted people who were hammered and doped up and pissed off, armed with knives and guns. He’s been to the funerals of his fellow officers. All young men. He’s been prepared to die in the line of duty since he was twenty. Fifty-four is old. It’s a fuckin’ luxury.
He gulps another nip and exhales, enjoying the burn. It’s the certainty he hates, for one thing. Knowing he has only ten years left, twenty tops, that it’s 100 percent fatal, makes his situation hopeless. Certainty eviscerates hope.
He could hope for a cure. Maybe those doctors will discover one within the next ten years. Dr. Hagler said there were promising things in development. She used words like treatment and research, but, and he listened for it, she never once said the word cure. No, Joe’s not going to hold his breath for a cure for himself, but he’ll climb a mountain of hope every day for his kids.
His kids. He knocks back another couple of gulps. They’re all in their early twenties. Still kids. In ten years, JJ, his oldest, will be thirty-five. The average age of onset. This friggin’ disease will be about done with Joe as it’s starting in on them. Maybe they’ll all g
et lucky, and by the grace of God, none of them will get this. He knocks three times on the pier.
Or all of them could have it, already hibernating inside them, waiting to crawl out of its cave. JJ’s a firefighter trying to start his own family. Meghan’s a dancer. A dancer with Huntington’s disease. A tear rolls down Joe’s face, hot on his wind-chilled cheek. He can’t think of anything less fair. Katie’s hoping to open her own yoga studio. Hoping. If she’s gene positive, will she stop hoping? Patrick doesn’t know what the hell he’s doing yet. He might need the better part of the next ten years to figure his shit out. How on God’s earth are he and Rosie going to tell them?
He’s also hung up on the how of it, his dying. He’s seen exactly what this disease does to a person, what it did to his mother. It’s a relentless fuckin’ demon. It’s going to strip him of everything human until he’s just a rack of twisting bones and a beating heart in a bed. And then it will kill him. Getting shot at and not running away takes bravery. Walking into a domestic dispute, breaking up a gang fight, chasing a suspect in a stolen car takes bravery. He’s not sure he’s brave enough to face year ten of Huntington’s. And there’s honor in dying as a police officer on duty. How will he find the honor in dying with Huntington’s?
He hates the thought of putting Rosie and the kids through this unthinkable ordeal, through what he and Maggie and mostly Joe’s father witnessed, powerless. Shit. Maggie. Does she know anything about this? Did his father know? Did letting everyone think his mother was a drunk carry less shame than branding her name with Huntington’s? If his father knew about HD, who was he protecting?
Everyone in Town blamed her. His mother’s tragic predicament was her own damn fault: She’s a lush. She’s a bad mother. She’s a sinner. She’s going to hell.
But everyone was wrong. She had Huntington’s. Huntington’s destroyed her ability to walk and feed herself. It mutilated her good mood, her patience and reasoning. It strangled her voice and her smile. It stole her family and her dignity, and then it killed her.
“I’m sorry, Mum. I didn’t know. I didn’t know.”
He silently cries and wipes his wet eyes with his coat sleeve. He exhales and tips back one more glug of whiskey before capping the bottle. Standing on the edge of the pier, he looks down past the tips of his sneakers at the black harbor water. He reaches into his front pocket and pulls out his change. He sorts out four quarters, warm and shiny in his cold, pink hand. Each kid has a fifty-fifty chance.
He flips the first quarter, catches it in his left hand, and then turns it over on the back of his right. He removes his left hand, revealing the coin.
Heads.
Joe throws it as far as he can. He follows its flight with his eyes, sees the point where it enters the water, and then it’s gone. He flips the second quarter, catches, turns, reveals.
Heads again.
He chucks that one into the water, too. Third quarter.
Heads.
Fuck. He winds up and pitches the coin high into the air. He loses sight of it and doesn’t see where it lands. Joe holds the last quarter in his hand, thinking of Katie. He can’t flip it. He fuckin’ can’t. He sits back down on the edge of the pier and cries into his hands, releasing pained, vulnerable, boylike sobs. He hears the voices of people walking in the shadows of Old Ironsides. They’re laughing. If he can hear them laughing, they can definitely hear him crying. He doesn’t fuckin’ care.
He’s soon emptied out. He dries his eyes, takes a deep breath, and sighs. Rosie would call that a good cry. He’d always thought that was a ridiculous expression. What could be good about crying? But he feels better, if not good.
Joe stands, opens his right hand, and again considers the fourth quarter sitting in his palm. He shoves it into his other pocket, down to the bottom where it’ll be safe, grabs his bottle of whiskey by the neck, and checks his watch. It’s time for supper.
He walks the length of the pier, whiskey playing in his head and legs, his cheeks raw from the wind and tears, with every step praying to God and the Virgin Mary and St. Patrick and whomever will listen for a dollar’s worth of good luck.
PART II
The mutation associated with Huntington’s disease (HD) was isolated in 1993, mapped to the short arm of chromosome 4. This historic discovery was made by an international collaboration led by a team of neuroscientists in a laboratory in the Charlestown Navy Yard. Normally, the trinucleotide cytosine-adenine-guanine (CAG) is repeated within exon 1 of the Huntingtin gene thirty-five times or fewer. The mutated gene has thirty-six or more CAG repeats. This expanded genetic stutter results in too many glutamines in the Huntingtin protein and causes the disease.
Every child of a parent with HD has a 50 percent chance of inheriting the mutated gene. The discovery of this mutation made genetic testing possible for anyone living at risk. The test definitively determines genetic status. A positive test result means the person has the mutation and will develop HD. To date, 90 percent of people at risk for HD choose not to know.
CHAPTER 10
It’s Sunday afternoon, and Katie skipped both yoga and church. Church doesn’t really count. She hasn’t been to Sunday Mass in years, but the thought of possibly going before deciding not to go is still a habit, maybe even a guilty pleasure. She was brought up strict Irish Catholic, which most memorably involved confessing an invented assortment of harmless sins on Saturdays to the priests, eating wafers of Christ’s body on Sundays (no wonder she’s vegan) and loaves of shame every day of the week, attending parochial school, where she learned from the nuns that sitting fully clothed on a boy’s lap could get a girl pregnant, and saying the Angelus every evening before supper. Protestants were evil, monstrous people and somehow probably contagious, and Katie grew up fearing them, praying to God she’d never see one, never actually knowing what a real-live Protestant looked like. She could recite the Our Father and Hail Mary before she knew how to spell her name. She never understood how Jesus dying for her sins on Good Friday resulted in candy delivered by a bunny on Easter Sunday, and she’d always been too afraid to ask. This remains a mystery. And every day smelled of incense, prayers lifting in swirls of smoke, floating up to God’s ear. She liked the incense.
Yoga is Katie’s real religion. She found it by accident. It was three years ago, her first year out of high school, and she’d been waitressing at Figs. She walked by Town Yoga every day on the way to work and one afternoon, curious, popped inside to grab a schedule. By the end of her first class, she was hooked. Her dad likes to say she drank the Kool-Aid, chugged a whole pitcher of it. She saved up her tip money to pay for her two-hundred-hour certified teacher training that winter and has been teaching yoga ever since.
She loves the physical practice, the postures that teach grace, resilience, and balance. Plus her abs and biceps are wicked awesome. She loves the mindful breathing, the flow of prana, which promotes a sense of grounded calm over reactive chaos. She loves meditation, which, when she can actually do it, clears the toxic trash heap in her head, silencing the negative self-talk—that cunningly persuasive voice that insists she’s not smart enough, pretty enough, good enough—as well as the fictional gossip (it’s always fictional), the constant doubt, the noisy worry, the judgments. She loves the sense of oneness she feels with every human being within the vibrating notes of ohm. And every day still smells of incense.
She can’t remember the last time she missed Andrea’s Sunday morning Vinyasa. She knows she’ll regret sleeping through it later. But right now, well after noon and still lazing in bed, her bed, with Felix, she regrets nothing.
She’s been dating Felix for a month and a half, and this is the first time he’s spent the night at her place. They met the first Tuesday in April. It was the first week of Roof Deck Yoga, classes taught outside on the fenced-in wooden patio behind the studio. Katie likes teaching outdoors, sunshine warming muscles, fresh air breezing against bare skin, even if that air
sometimes smells of diesel and garlic chicken from Chow Thai.
She’d never seen him before. She didn’t know him from high school or the bars or waitressing. The majority of her students are Toonies and women, so the few good men always stand out. Felix stood out more than anyone.
He practices yoga in shorts and no shirt. Bless him for that. He’s tall and lean with a small waist and defined but not bulging muscles. His head and chest are shaved smooth, and she remembers, that first class, both were shining with sweat in the sun. As she stood with one foot on his mat, assisting him in Downward Dog, her left palm on his sacrum, her right hand sliding along the length of his spine to his neck, she found herself wanting to trace the black lines of the tribal tattoo on his shoulder with her fingers. She remembers blushing before stepping back and calling out Warrior I.
He came to class the following Tuesday, this time indoors due to inclement weather. He lingered a long time in the room after Savasana and took even longer gathering his things. He asked her a few questions about the schedule, about pass cards, and purchased a coconut water. When she asked whether there was anything else, hoping there was, he asked for her number.
They both dove in headfirst. Like most Toonies, Felix owns a car, which means they aren’t stuck going to Ironsides or Sully’s, and their relationship has remained mostly private, blossoming outside the scrutiny of the Townies. They go to dinners in Cambridge and the South End. They’ve been to Cape Cod and New Hampshire, and they even went to Kripalu for an R&R weekend. He goes to her Tuesday and Thursday classes every week, and they both take Andrea’s class on Sunday mornings. The one place they’d never been together is her apartment. She’s told him it’s because his place is so much nicer. It is. And he lives alone. Her sister, Meghan, goes to bed so early. They’d disturb her, and she needs her sleep.