Chapter 28
Hunter
10 years ago
Summer wasn’t happy with me.
She’d said she understood why I hadn’t told Jayce about us. But now two months had gone by, and hiding her—hiding our relationship—during summer break made things a challenge. I couldn’t go down to San Diego to visit her too often because I’d snagged an internship at an architectural firm I wanted to work at after graduation. And if she came up north, we didn’t exactly have a place to hang out considering I lived with my aunt and uncle, and so did my brother. At least until today.
Jayce was moving out. Amazingly enough, he’d come clean with Emily and admitted he wasn’t ready to get married. She had been very understanding. Honestly, forgetting the selfish reasons I had, I really hoped things worked out between the two of them—any woman who could be that understanding while fielding pregnancy hormones was worth working things out with.
“I miss you,” Summer whined through the phone.
Summer was not a whiner. I needed to fix the mess I’d gotten myself into and tell the truth once and for all. I loved this girl.
“Yeah, babe. I miss you, too. I’m going to sit down with Jayce today after I help him move. Then I’ll talk to my aunt and uncle, and I’m sure they won’t mind you coming to stay for a visit here.”
“Really?” She perked up.
“They might make you sleep in the guest room.”
“I don’t even care. I just miss your face.”
“I miss the whole package.”
Jayce popped his head into my bedroom doorway. “Give me a hand carrying my mattress down the stairs?”
I covered the phone. “Yeah. Give me two minutes.”
He nodded and disappeared.
“I’ll call you tonight.”
“Okay. Good luck today.”
“Thanks.”
I tossed my phone on the bed and passed Uncle Joe on the stairs. He lifted the small lamp in his hands. “Wouldn’t let me help him with the mattress. Little shit thinks I’m too old to carry more than five pounds.”
I chuckled. “Don’t worry. When I move out, I’ll put my feet up on the couch, and you can load the entire truck yourself.”
Our cousin Cara’s room was the first door at the top of the stairs. She lay on her belly in the center of her bed, kicking her feet in the air while reading a magazine.
“Don’t worry, Cara,” I called as I passed. “We got it.”
I chuckled and kept going to Jayce’s room at the end of the hall. His door was open, but he wasn’t inside. I looked around the other rooms on the second floor, but he was nowhere to be found. So, I took a seat on his bed and looked at the half-empty room. Even though we were only in the same place for the summers, it would be weird to live here alone. Jayce had been the constant in my life, before and after Mom died.
A noise from within the room surprised me, considering I’d thought I was alone. It sounded like Aunt Elizabeth’s dog had gotten a fur ball caught in his throat again. I looked under the bed—no dog. Then got up and looked on the other side of it. I nearly fell over, finding my brother lying on the floor. He was pale as a ghost and foaming at the mouth while his body twitched.
I screamed out the window for my uncle, and opened my brother’s mouth to see if he was choking on something. There was nothing visible, and I had no idea what to do, so I lifted him from the floor and started running down the stairs with him shaking in my arms.
Luckily, medical care was only a floor away when you lived with a doctor. Uncle Joe sprang into action and had me set Jayce on the couch so he could examine him while I called 9-1-1. By the time I’d hung up, the twitching had stopped, and the color had started to return in my brother’s face.
“What the hell happened?” I asked.
Even Cara had gotten up to check out the commotion.
“He had a seizure.” Uncle Joe looked at Jayce. “Just keep still, son. Do you remember if you fell before that happened? Hit your head or anything?”
My brother was disoriented and didn’t respond.
“Why did that happen? What’s wrong with him?”
“I don’t know, but we’ll get to the bottom of it.”
***
Four days.
Four fucking days.
I was seriously close to losing my patience. What the hell takes so long? Over these four days, they’d wheeled Jayce around for all types of scans, drawn blood, and hooked him up to a bunch of machines. Eight different doctors had asked him the same questions over and over. But no one had said shit.
“Dude. You’re going to be the one sitting in this bed with a breakdown if you don’t relax soon.”
Typical Jayce, more worried about me than himself.
“Plus, you’ve been wearing those clothes for four days. You’re starting to stink up my room.”
I dragged a hand through my hair. “Why didn’t you tell me about the shit you told the doctors? I had no idea you had any other symptoms going on.”
He watched me pace back and forth at the foot of his bed. “This is why. You’re gonna wear a path in the floor if you don’t sit down and stop worrying.”
A few days ago might’ve been his first seizure, but apparently Jayce had had other shit going on for a while and failed to mention it to anyone. Muscle spasms, tremors, weight loss—I’d noticed two of the three and asked him about them.
“Your fucking hand shaking—the first time I noticed it you told me you were hungover. Had you even been drinking the night before? I should’ve made you go to the doctor. Why didn’t you tell me?”
My brother’s face turned serious. “You want the truth? I didn’t want to know.”
“Great.” I shook my head. “Now you’re Mom. Ignore medical care and leave everything to chance.”
“What difference does it make to know? If I have Parkinson’s like Mom, there’s no cure for it anyway.”
“No. But there’s treatment. And then you could know what to look out for.”
“The doctor said seizures aren’t even a common symptom of Parkinson’s. So you’re blowing the entire thing out of proportion.”
Uncle Joe walked into the room carrying a file. He looked exhausted. He’d been here twenty of twenty-four hours for the last four days. But unlike me, he’d at least showered and run home for a change of clothes. I’d refused, sleeping on the chair in the waiting room when they kicked me out of his room at night.
He looked around. “Where’s Emily?”
“I made her go home and get some rest.” Jayce lifted his chin toward me. “Like this pain in the ass should.”
Uncle Joe looked at me. “I think that’s a good idea. Why don’t you go home and get some rest. I want to talk to Jayce alone anyway.”
“Why?” I eyed the folder. “You have results finally?”
Uncle Joe looked to Jayce. “I know you boys are close. But medical information is private.”
Jayce looked between our uncle and me. “It’s fine. Hunter can stay.”
“You sure?”
“Yeah.”
My uncle pulled up a chair alongside Jayce’s bed. “Why don’t you have a seat, too, Hunter?”
When someone tells you to have a seat, bad news comes next. “I’d rather stand.”
He nodded and looked down at the unopened folder on his lap for an excruciatingly long time. Taking off his glasses, he rubbed his tired eyes before starting.
“We all assumed your mother had Parkinson’s disease. She had the classic symptoms. And, well, you know she refused to go to a doctor for a workup.”
“She didn’t have Parkinson’s?” I asked.
“Obviously, there’s no way to be certain, but I no longer think so.”
“Does that mean I don’t have Parkinson’s?” My brother said.
Uncle Joe shook his head. “No. You don’t have Parkinson’s, son.”
Jayce’s head tilted back to the ceiling, and his shoulders slumped with relief. “Thank God.”
The excitement I felt was short-lived after I took a look at my uncle’s face. He wasn’t relieved like we were. I suddenly thought sitting down was a good idea.
“There are some conditions that have very similar symptoms to other conditions. Even yesterday when I learned all about the symptoms you’ve encountered over the years, it still sounded like Parkinson’s. And while seizure isn’t a common ailment of those suffering from the disease, there is a known comorbidity between Parkinson’s and epilepsy.”
“So I have epilepsy?”
“No, you don’t have epilepsy either. I’m sorry. I’m confusing things by going into all of this explanation. I just wanted you to understand that sometimes symptoms can present in a manner that leads to a diagnosis, but without proper testing, there’s no way to truly confirm what you’re dealing with. Your mother is gone almost two years now, and we’re still guessing since she refused testing. We’ll never be one-hundred-percent certain, but the genetic condition you have now leads us to believe she didn’t suffer from Parkinson’s either.”
“Genetic condition? What’s wrong with me?”
My uncle’s eyes teared up. “You have a genetic condition known as Huntington’s disease, Jayce. Yours is considered juvenile Huntington’s disease because of your age when you first started to experience symptoms. It’s an inherited defect in a single gene, an autosomal dominant disorder. It causes progressive degeneration of nerve cells in the brain, which impacts a person’s ability to move, among other things. That’s why you’ve been tripping and had some hand tremors. At the start, it can mimic things someone might do when they’ve had too much to drink.”
“At the start? What else is it going to do to me?”
“It’s difficult to know for sure, especially in cases of juvenile-onset Huntington’s, because it’s rare. But most people will have impaired movement and cognitive issues.”
“Cognitive? It’s going to affect the way I think? Like how? Mom always seemed depressed, but we assumed that was because she didn’t feel good.”
“Most likely that was due to Huntington’s. Dr. Kohan is going to come in and talk to you in detail in a little while. He’s an expert in the field and will go over everything and answer all of your questions. I know the basics, but since juvenile Huntington’s is not common and the symptoms present differently, he’s in a better position to explain things to you.”
My head spun, and my brother looked shell shocked.
“Is there a cure for Huntington’s?” I asked.
The look on my uncle’s face answered the question. “Not as of today, no. But science makes new breakthroughs all the time.”
“But people live with it, right?”
“There is a shortened life expectancy with the disease.”
“Shortened?” My brother finally spoke up. “How much shortened?”
“On average, from the time symptoms appear, people live between ten and thirty years when they are diagnosed as adults. But with early-onset like you’ve experienced, the lifespan is generally ten years or less. I’m sorry, Jayce. I’m so sorry.”
The three of us sat in complete silence for a long time after that. Eventually, Dr. Kohan came in and joined us. He spent another two hours going over things, although I’m not so sure either Jayce or I absorbed much.
I couldn’t get past the life expectancy—ten years was the maximum from the time symptoms first appeared. Jayce had said yesterday that he’d started to notice small issues as far back as five years ago. My brother had just turned twenty-one.
“I’ll leave you boys my card.” Dr. Kohan took a pen from his lab coat pocket and jotted down something on the back. “If you have any questions, my cell phone number is here. Call me day or night. It’s a lot to take in. I know that. You’re going to have questions once everything really sinks in. That’s what I’m here for.”
Dr. Kohan and Uncle Joe spoke for a few minutes, and then Dr. Kohan extended his hand to my brother and me. “I’ll have my office manager give you both a call to set up appointments for this week in my office to follow up.”
“Both of us?” I shook the doctor’s hand.
“Yes. I’d like you to meet with our genetic counselor before you get tested. She works in my office on Thursdays.”
“Tested?”
The two doctors looked at each other before my uncle spoke gently.
He placed a hand on my shoulder. “As Dr. Kohan explained, Huntington’s is hereditary. Fifty percent of children inherit the gene from a parent.”
I’d been so freaked out about my brother, that part of the conversation had slid right by me. I’d heard the fifty-percent statistic, but it didn’t register correctly. I guess I assumed if fifty percent got it from a parent, and there were two of us…my brother had been the unlucky one. But the actual words our uncle had said sunk in now. Fifty percent of children—meaning each child had a fifty-fifty chance.
My brother would be dead within five years, and I had the same odds as a coin flip of having the same disease.