Chapter Forty
Jesse
Before
“It’s time to discuss your options,” my father’s doctor said. He paused, waiting for an acknowledgement before saying any more.
As the seconds ticked by, I heard his cufflinks scrape over his desk. Every roll of his thumbs caused the metal to drag across the wood again and he repeated the action over and over.
All I wanted was silence, the sound making made this situation even more real.
Real was terrifying.
Unimaginable.
Unfathomable.
“Jesse …”
I gasped.
It was as though he had snuck up behind me and shouted, “Boo,” in my ear. I expected to hear my name, but that didn’t make it any less shocking.
It hurt.
Everything fucking hurt.
I couldn’t move.
I couldn’t speak.
All I could do was stare at him from the other side of the desk, listening to the whoosh of the metal, remembering when he has last said, “It’s time to discuss your options.”
My eyes shifted to his monitor. It showed all the tests that had been run—bloodwork, MRIs, muscle biopsies, an electromyography, nerve conduction studies. There had been so many, and they had taken months.
Months of questions.
Tears.
Needles and pain and stark white rooms and the smell of antibacterial and alcohol.
Oh God.
My eyes slowly lifted to the top of the screen where the name and diagnosis was listed. I had done that so many times in the past, seeing my dad’s information there.
This time, it wasn’t his.
It was mine.
Patient: Black, Jesse, 42
Diagnosis: Familial Amyotrophic Lateral Sclerosis (FALS)
One week ago, I sat in this same seat as the doctor read me my life sentence. My disease was different than my father’s. Where his was sporadic, mine was inherited, which made it more aggressive, and one of the reasons I started showing symptoms at such a young age.
Two years.
That was how long he gave me and the second opinion I received said the same thing.
Twenty-four months and I would never see my children or my husband again.
What was I supposed to do with this news? How was I supposed to live the rest of my time when I could feel myself dying? What if I passed this onto my children whose chance of inheriting it was extremely high?
I swallowed, feeling the spit burn all the way down, before my stare moved back to the doctor’s. “Yes,” I whispered.
“There’s a cocktail of medications I would like to start you on. One is designed to slow the atrophy, the other is …”
I stopped listening. I already knew the drugs that were available, their side effects, how much insurance would cover. I knew an antidepressant would be added into the cocktail. I knew therapy for Emery, the kids and me would be recommended.
They were going to need counseling while they watched me die.
I couldn’t put them through this, I couldn’t make them hurt worse, I couldn’t make them terrified of a future without me because once they found out they would stop living.
And I needed them to live if I was going to die.
That was why I took this journey alone and after a week of sitting on it, I returned to discuss my future. Except he didn’t have to tell me. I saw it every day when I visited my father.
One day, I wouldn’t be able to hide it.
Right now, I still could.
“Tell me about death with dignity,” I said.
My father had never asked the doctor that question. He didn’t consider it an option, but I wanted to know everything that was available to me.
There were several more swipes of his cufflinks across the desk and a large inhale. “Act thirty-nine provides an end-of-life option when a patient has a life expectancy of six months or less.”
My face was so numb, I didn’t feel my lips part or, “Do I qualify,” come out of them.
His hands stopped moving and suddenly there was silence.
This was what I wanted all along.
Now that it was here, I couldn’t stand it. It made every joint, every bone, every muscle ache even more.
“It’s something we would discuss in great length.”
“Dr. Moore …” I took a breath. It felt like his hands were around my throat and he was squeezing, pressing his thumbs against my tongue so it was almost impossible to speak. “Would I qualify?”
With every beat that passed, it was as though he were clenching me even tighter.
“When I determine your disease has progressed enough where your life expectancy is six months or less, then yes, you would qualify.”
He was willing to write the prescription. That was going to be my next question.
For the last week, I’d spent all my time at the library, researching Act 39, reading every article that had been written about the law. I learned the process, requirements, the steps the physician had to follow.
There was one major problem with the law.
The tremors weren’t just in my hands now. They were going through my whole body, raising as high as my lips and as low as my toes. I clung to my knees, holding them with all my strength when I said, “At the six-month mark, I’ll be fully paralyzed with a feeding tube. More than likely, a ventilator.”
Those words were so familiar.
I just never thought I’d use them to describe myself.
“Due to the way the law was written, it does mean you’ll be between middle and late stage.” He paused. “However, the dose must be self-administered, so your hands can’t be paralyzed.”
I would still be in a wheelchair with the start of slurred speech. Swallowing would begin to get challenging, large bites would choke me. Eventually, I’d lose the ability to speak.
It didn’t matter how hard I tried to stop it or what medications I took.