Touching Down(29)

My stomach folded whenever I thought about the path this illness would take me down. So I didn’t think about it—at least as much as I could. The only time I’d talked about it had been with my neurologist, shortly after I’d been diagnosed, but I knew I couldn’t dodge Grant’s questions.

“The first symptom is usually chorea, the involuntary shaking of the body. That’s what I’ve been mainly dealing with.” My eyes dropped to my hands. They’d stopped trembling, but I never knew when they’d start again. Feeling control over your body one moment and having no control over it the next was a maddening experience. To one minute feel as though your body was your ally and the next your enemy. “From there, it starts messing with people’s memory, speech . . . eventually, it trickles down into every neurological function in the human body.”

I summed it up as honestly and as simply as I could. He’d learn the gory details soon enough. Even if he wanted the harsh truth, my goal was to ease him into it. If one could be eased into finding out a person they cared about had a disease such as this one.

“Will you have to be in a wheelchair? Eventually?” He stared at the chair I was sitting in, seeing something else.

“Yes. Eventually, I won’t even be able to swallow on my own. My body will be a shell.”

His hands curled into fists. “Your mind?”

I slid my hair behind my ear, tasting the familiar bite of bitterness on my tongue. “I’ll wish it was gone, but no, the mind of a person with HD is usually the last thing to go.”

Grant’s back was rising and falling higher from his breath, still glaring at the linoleum. “So you’ll be—”

“Trapped inside of my own body with no way to communicate?” I interjected. “Yes, that’s the way it will be in the end.”

A rush of air blew past his lips. “Son of a bitch.”

“Exactly,” I whispered.

“But it’ll be years before that happens, right? Decades?” His eyes lifted to mine. “You’re young. Strong. That won’t happen until you’re old, and by then, the rest of us will all be there with you. Hell, by then there might be a cure.”

My heart ached from hearing Grant go through the same questions, clinging to the same hopes I’d had when the doctor had read me my proverbial death sentence. After the initial shock of it, I’d asked questions. Dozens of them. Each one circling around some semblance of hope that this awful disease wasn’t as truly heinous as it seemed.

At the end of that meeting, I’d learned that I was right. Huntington’s wasn’t as bad as it seemed—it was worse.

“That’s true, it can take years for someone with Huntington’s to get to those final stages of the disease. Most people can make it to their fifties or sixties before it gets really bad.” Grant was in the middle of exhaling when I continued, “But I was diagnosed at a very young age. Most people don’t learn they have it until they’re in their forties or older. Finding out you have Huntington’s in your twenties is extremely rare. So my symptoms have been advancing quicker than the average HD patient.” I had to pause to take a breath, to take a moment to confront a reality I didn’t want to face.

“What does that mean?” Grant asked. “What the fuck does that mean, Ryan?”

Still, he was holding onto hope. Still, he wasn’t allowing the word to settle into his consciousness.

“It means I’m not going to make it into my sixties. Or my fifties.” More than anything else, these were the hard words to speak. Because as I said them, I envisioned each milestone that came with that passage of time.

“What are you trying to tell me?” Grant scooted closer until he was barely balanced on the edge of his seat. “Just give it to me. I can take it. You don’t need to ease me into this.”

My eyes locked on his. I saw enough strength there for me to borrow some. “I’ll be lucky to make it into my thirties.”

Grant’s throat bobbed like he was swallowing an apple whole.

“And even if I do, I won’t be the same person you’re sitting in front of now.”

His jaw set, the muscles in his neck going rigid. Still, his eyes never wandered from mine. “Are you telling me this bastard is going to kill you, Ryan Hale?”

My hand lifted to his face. It took a moment before settling against his cheek, testing to see if he was okay with me touching him. Testing to see if I was okay with touching him.

“I’m saying it’s going to make me wish it would, but no, Huntington’s won’t kill me. At least not directly.” His jaw worked beneath my hand, I guessed from him biting his cheek. “But something else will, whether it be a common cold or pneumonia or a swallowing hazard or a fall. This disease will drag me to death’s door, knock on it, then run away to leave something else to finish the job.”