Chapter Thirty-Eight
Jesse
Before
When I walked into the library, my father didn’t glance up from his book. His eyes stayed focused on the large hardcover in his lap, completely ignoring the sound of the door closing and my heels clicking on the hardwood floors. Even when I bent down and kissed his cheek and said, “Hi, Daddy,” I wasn’t acknowledged.
My father was on the quieter side, the shyer of my two parents. When it came to our relationship, he wasn’t overly talkative, but he wasn’t speechless either.
His silence told me something was wrong.
I sat in the chair next to his, my body facing him. “Dad, please talk to me.”
Several seconds passed before he responded, “I have nothing to say.”
He was angry because I had told my mother about the two doctors’ appointments I had gone on with him and the first round of tests that had been done. He didn’t tell her, and someone needed to, so I took it upon myself. I would always be there for him, but my mother needed to be there, too. She was devastated to be hearing it from me, petrified of what the results would be, and confused as to why he didn’t tell her.
My mother had confronted him two days ago and my father hadn’t spoken to me since.
“I don’t understand, Dad.”
When he looked up, I almost gasped from the pain in his eyes. “You’re young, healthy. You don’t lie in bed thinking about how you’re losing control of your body, feeling weak, and unbalanced. I can’t even open a goddamn pickle jar anymore.” Frustration poured through his voice. “Thank God you don’t know what it feels like. But, until you do, you can’t sit there and tell me what I should and shouldn’t do.”
He was nervous, I could understand why. When we’d gone to his primary doctor, he referred us to a neurologist, who we met with last week. During that meeting, my father’s symptoms were discussed in much greater detail and a physical exam was preformed, assessing Dad’s reflexes and movement—things I didn’t know were even a problem. The doctor told us there could be many different things going on that would cause these symptoms. Muscular diseases were much harder to diagnosis because many of them didn’t have tests, they just had to rule things out. The first step was taking his blood and urine, which was done last week along with an MRI. Those results had already come in and more testing had been set up.
What was missing from all of this was my mother.
“Dad, Mom should have been there, and she needs to be there going forward.”
He turned his head away, refusing to look at me. “That’s your opinion. Ultimately, this was my decision and you took that away from me.”
I tried to keep my voice down. Mom was out walking but could return any minute and I wouldn’t hear her if she was outside the door. “What is going on? Why don’t you want her there?”
“If it was up to me, I wouldn’t tell her at all.”
Shock blasted through my body. I literally couldn’t believe what I was hearing. Or how to process this. Or how someone I loved could be this selfish.
I got up and sat on the small table that was in front of his chair, getting myself as close to him as I could. “Why, Daddy? Make me understand this.”
“I don’t want her to worry about me.” He was biting back so much emotion, my own chin was quivering. “Once she knows there’s something wrong she’ll be watching me like a goddamn hawk. I’ll become a burden and I don’t want that. I just want to be the man she married.”
He clasped his hand and hissed from the pain.
I did everything I could to keep the tears in when I said, “A burden?” I shook my head to regain my composure. “You’re her husband. You’re not a burden to anyone.”
“I will be.”
He thought he had the disease that had been mentioned at the end of the exam and when I’d gone home that night, I’d researched everything I could on it. The symptoms my dad had mentioned were listed.
Every single one of them.
It didn’t mean anything.
Or it could mean everything.
But if my father had ALS, the disease the doctor had said last because it was the worst-case scenario, then all of our lives were about to drastically change.
“We don’t know anything yet,” I reminded him. “Let’s stay positive. The MRI—”
“Told us nothing. How sad that I was praying for it show a tumor, which would explain why all of this is happening to me. But I don’t have cancer, I have something worse. Something that can’t be cured.”
“Don’t say that. There’s lots of other things this could be—”
He clenched the armrests. “We both know what it is, Jesse. The tests are going to confirm it, and then I’ll have three to five years before I’m on a ventilator.”
I couldn’t handle the thought of that or the image I saw in my head of my father with a tube down his throat in a hospital bed.
“Dad …”
His stare intensified. “The other reason I didn’t want to tell your mother is because I don’t want her looking at me with pity in her eyes. Pity makes me feel like I’m failing. I already feel enough of that.”
My father had so much pride. He wasn’t vulnerable or weak and I could tell he felt both right now. It made me want to break for him.
“No one in this family would do that.”
His face softened for just a second and I saw a completely different side of his expression. It was as though he were letting me in, revealing how he was really feeling deep inside.
And what he showed me was …
Terror.
And then it was gone, replacing it with a cold, angry stare when he said, “Jesse … it’s the way you’re looking at me right now.”