So my mom is my age (49) when she gets diagnosed with ALS and has her first piece of medical equipment

Thirty years ago, my mom came home from the U of MN hospital equipped with a cane. So that was the first sign I saw that she was being medicalized.

She didn’t really talk to me for the first couple of days and she napped a lot, but one afternoon she did open up a little bit.

“So what did they tell you?” I asked, still not really having been given the full story yet on what she had.

“Well, the doctors said they finished with the tests and had the results and asked your dad to be there when they gave the results.” She said. “When they came into the room, I asked ‘What’s the prognosis?”

“What does that mean?” I asked.

“Didn’t you pay attention to Chad Everett on Medical Center?” she asked. “That was you in the beanbag chair watching it with me, right?”

“Yeah.” I said.

“He’d say “What’s the Prognosis?” to one of the X ray lab technicians when they were looking at an x-ray. Don’t you remember?”

“What does it mean?”

“It means what have I got and how long do I have?” she said. Then she continued.

 “They said I had Lou Gehrig's Disease. Amyotrophic Lateral Sclerosis.” She said.

“What’s that?” I asked. I had never heard of it.

During the course of her disease, David Niven got it, and died. There was a biography about his life, and my mom and dad bought it, to see what his symptoms were. My mom had seen him on Merv Griffin or Mike Douglas around the time she first found out about her disease, and she said he seemed out of it and drunk. Turns out his slurred speech was the early manifestations of his disease.

“It’s a type of muscular dystrophy where I lose strength in my muscles.”

“How long do you have it?” I asked.

“It lasts a while. But mostly about five years.” She said.

“Then what?” I asked.

She pulled a brochure off the coffee table in the living room where she was lying on the couch, above where I was on the floor, and she handed it to me.

“Read this. It does a better job than I can of saying what it is. I still don’t understand it.” She said.

I took the brochure.

“Go ahead. You can go and read it now if you want. It can answer every question. We were given this by the doctors. It’s for you and your brothers.”

I looked up at her. I had a bad feeling about what I would find in the brochure.

“Go read it” she said. “I’m going to take a short nap before your dad gets home from work.”

“What are we having for supper?” I asked.

“Pepper steak and rice.” She said. “From David Fong’s restaurant. I’m too tired to cook tonight.”