“Not yet. The oldest is married.” JJ and Colleen. They’re trying. The disease was passed from mother to son. That son became a father. And so on. And so on.
“It will be important to talk with them, let them know what they’re facing, especially with respect to family planning. There are things that can be done, medical procedures, to ensure having a baby who is gene negative. And there’s genetic counseling and screening if they want to know their own risk status.”
“What’s risk status?”
“They can have the same blood test you had, but this time it would be presymptomatic, to find out if they’re gene positive or gene negative.”
“So they can find out now if they’re going to get this later.”
“Yes.”
“Does the test tell you when you’ll get it?”
“No. The average age of onset is thirty-five, but you’re a bit older. If any of them are gene positive, they’re probably looking at around that age, but don’t quote me on that.”
“If any of them find out they have this thing, if they take the test and it’s positive, can they do anything about it to prevent it from happening?”
“No. Unfortunately, as of now, no.”
A genetic crystal ball. Exoneration or the death penalty for each kid.
“So what do we do now?” asks Joe.
“I want to prescribe a neuroleptic for the temper flare-ups. It’s a low dose, just a whiff. I don’t want to snow you. Rosie, if you don’t notice a difference, let me know; we can go a bit higher.”
Joe bristles at the thought of taking any pills. He doesn’t even take a vitamin.
“I also want to get you started on physical therapy for help with strength and balance, and speech therapy for slurring and swallowing.”
“I don’t have any problems with slurring or swallowing.”
Dr. Hagler meets Joe’s eyes and pauses, conveying her reply without words. Yet. He doesn’t have problems with slurring or swallowing yet. This is coming.
“It’s good to stay ahead of it. Think of it as preparing for battle. Like training to become a police officer.”
In his police academy training, Joe learned how to carry and aim a firearm; procedure for responding to domestic calls, robberies, traffic accidents, and shootings; how to think at least six steps into any given scenario; how to imagine every possible scenario. Now he will be training to swallow.
“And then there are clinical trials. We’re lucky to be here in Boston, where there’s a lot of exciting research happening. There are many potential treatments being discovered in animal models, and we’re trying to turn those into treatments for people. The key is participation. There’s a trial ongoing now, a Phase II study that I’d like to enroll you in if you’re willing.”
“Phase II, what does that mean?”
“It means we’re testing for safety.”
“So it might not be safe?”
“It was found safe in mice. The next, necessary step is to determine if it’s safe in people.”
“I don’t like the sound of that, Joe,” says Rosie. “They don’t know what it does. What if it does something horrible to you?”
Joe doesn’t know the first thing about science. He pictures the Frankenstein monster and a team of frizzy white-haired doctors poking him with needles. Then he pictures his mother. His future. He thinks of JJ, Patrick, Meghan, and Katie. Their future. He’d chop off his own head and donate it to science right now if it’d save his kids.
“I’ll do it. Whatever it is. Sign me up.”
“But Joe—”
“There’s no cure for this thing, right? So how are they gonna cure it if they don’t have any guinea pigs?”
“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.