“If I know my days might be numbered, I want to savor each day. I want to enjoy every single thing I eat and drink, and all the people I meet, and every last second on this Earth. I want to laugh. I want to explore. I want to live my life, what’s left of my life, like a butterfly in the wind and go where the world takes me. I definitely don’t want to sit around in my dead-end job and wait for the next installment from the creepy old guy in Monett, Missouri, who met me in an online support group once and now sends me handwritten love letters in cursive.” She leaned into the camera. “Let me just tell you, as someone who might have a fatal health condition, there’s still nothing more terrifying than a handwritten letter in cursive. Especially when it’s accompanied by a Ziploc bag of his slightly-moist-for-some-reason homemade beef jerky. Trust me on this.
“So, I cashed in my 401(k), all $1,023 of it. Oh, and by the way, Patrick, I quit. Sorry you had to find out like this. And I’m leaving today. Now. Right after I upload this video. Actually, no. Right after I have a yard sale, sell my hair, and pawn my jewelry. Then I’m leaving. So, like, maybe tomorrow.
“Probably nobody will watch this. I don’t even know who I’m making this for. But I figure if it leads to even one dollar donated to research or one person deciding to live their best life, then I guess it’s worth it, right? Now, about my sister.
“My sister died of a rare fatal disease called amyotrophic lateral sclerosis. ALS. You probably know about it because a few years ago everyone was doing that Ice Bucket Challenge and dumping ice water on themselves in support of ALS research.
“I know about this disease because it’s been a part of my earliest memory. It is my family curse. My family has what’s called familial ALS, meaning it’s hereditary. The strain my family suffers from starts earlier and kills faster than the sporadic kind and the limited treatments available will only extend your life about three months. The particular mutated gene that causes it in my family hasn’t been identified yet. Meaning I can’t even test for it.” She paused. “I might have a ticking time bomb in my DNA.
“My grandmother had it. My aunt had it. My mom had it, though she died in a car accident before ALS took her life. My sister Melanie had it. And there’s a fifty percent chance I have it too…”
What she said after that, I don’t know, because my ears started to ring.
I’d been pacing, but now I had to sit. I had to sit or my knees were going to give out.
A 50 percent chance?
I mean, I knew about Melanie, but I didn’t know about the rest of them. She never told me, I didn’t know, it wasn’t in Drake’s videos or…She probably thought I knew because—
Her hand…
I started to wheeze.
Her hand…
She had told me. She told me and I didn’t fucking listen. I didn’t fucking hear her.
Information came flying back to me in patches, each bit sticking until it pieced together into some black, macabre obituary.
Hand weakness.
Her reasons for not dating.
Her tubes were tied, her saying she couldn’t adopt Grace because she wouldn’t be here in a year…
No…no no no no no.
I couldn’t breathe.
It was a wrecking ball to my universe. The shattering of everything. A beautiful stained-glass window in a thousand pieces at my feet.
She might be dying. The love of my life might be dying.
And I was going to have to watch.
CHAPTER 26
YOUR WORST
NIGHTMARES RANKED!
VANESSA
After ice fishing, I jogged up the steps and let myself into our room. Adrian was standing in front of the fireplace facing the door when I came in.
“Hey,” I said, pulling off my beanie. “God, I love your family. Your dad’s like a mountain man or something. Do you know he—”
“Are you sick?”
I unraveled my scarf. “What?”
“Sick,” he said again. “Are you sick? Do you have ALS?”
I wrinkled my forehead. “I don’t know…” I stared at him, confused. “Why are you asking me this?”
“I didn’t know…” he breathed.
I blinked at him. “You didn’t know what?”
He shook his head, and I realized how pale he looked. “I didn’t know it was hereditary.”
I felt my face fall. “What do you mean you didn’t know it was hereditary?” I said carefully.
He let out a shuddering breath. “I didn’t watch all your videos. I just…I just watched that one where you talked about meeting me and then ghost peppers—”
“Ghost peppers? That’s not even my channel. That’s Willow Shea’s channel. It was a collab.” My stomach dropped. “Adrian, what are you saying? Are you saying…you actually didn’t know about this?”
“I didn’t know,” he said again.
And then he started to wheeze.
I darted over to him. “Adrian!”
He was doubled over with his hands on his knees, gasping for air.
“You’re having a panic attack. Sit down. Sit.” My heart was thrumming in my ears.
It took me a moment to get him moving, but I finally led him to the edge of the bed.
I crouched in front of him. “Slow down your breathing. You’re hyperventilating. Breathe through your nose. In through your nose, out through pursed lips.”
He took a few labored breaths.
“You need to go to the doctor,” he rasped.
“What?”
“Go to the doctor. I’ll go with you. We need to know if that’s what this is.”
“I…Adrian, you don’t just walk into a doctor’s office and come out with an ALS diagnosis. There’s no test for it.”
He looked me in the eye, breathing shakily through his nose. “There has to be a test for it. People get diagnosed with it.”
“It’s diagnosed by excluding other diseases and monitoring your deterioration. It’s months and months of testing to rule out other things. It can take a year to get a diagnosis—”
“Then go do that.”
I scoffed. “No.”
He stared at me.
“No. I won’t. HIV, human T-cell leukemia, polio, West Nile virus, multiple sclerosis, multifocal motor neuropathy, Kennedy’s disease—they all mimic ALS. I’ll be tested for all of it, poked and prodded in the hospital for months and for what? I either have it or I don’t. And if I do, it’s fatal. There’s nothing they can do about it.”
He blinked at me. “But…but what if that’s not what it is? What if it is something else?”
I shrugged. “Then it won’t progress, and it won’t be a problem. If it’s still around in six months, but nothing else has changed, I’ll have my hand looked at again. But the most likely contender was carpal tunnel, and they’ve already ruled that out.”
He stared at me like I’d gone mad. “How can you live like this?” he said incredulously.
I shook my head. “What choice do I have, Adrian? What choice do I have but to live like this? I’ve always lived like this.”