Tuesday, 22 November 2016

The Worst Week Of My Life - Day 5

Thursday. November 22. 2012.

Thursday, Thursday, Thursday. I only remember three significant things from that fateful day. One in the morning. One at midday. And one in the aftermath.

I remember standing beside the window in the hospital room, there on the fifth floor, in the Neurology ward. I had eaten breakfast. Nothing was happening that morning. So I stood and looked out the window, picking out my apartment from the cluster of rooftops in the distance. I was trying to figure out where mine was, specifically in the building, by looking at the roof line and trees. I was really just staring, wondering what was happening to me.

Then it was lunch time. I called Dion and asked him to raid my fridge, to take out the food that mght be going bad, since I hadn't been there all week. The Neurologist was talking about keeping me in over the weekend. I argued against that. After all, I had a cabin booked for the weekend with about a dozen or more of my friends. It was the celebration of the last anniversary of my married life. It was to become something very different.

David came to visit me. Elizabeth had a gap in her work schedule so she came too. It was at about 2:00 PM when the Neurologist showed up in my room and said she had to speak with me. She looked at David and Elizabeth, and I said they should stay. I knew I would likely need someone around me in a few minutes, but not why. The Neurologist said "We think you have ALS."

I will never forget that sentence, the speaking of it, the place of it, the people there with me. David slumped against the wall. Elizabeth sat in the chair, emotionless. I switched into "fact mode", that place where my feelings are all shoved aside so I can deal with the issue at hand, even if it was my issue.

"How long?"

"We think about 36 months."

There was a lot of other discussion about what would happen next, about the ALS Clinic, about the contact person who would reach out to me. I asked a few more pointless questions, then the big one.

"Is there a chance you could be wrong?"

"There is always a chance of a mistake, but it's not likely."

"Have you been wrong before?"

"No. Not yet."

Shock set in. Faced with the certainty of progression and the likelihood of death within 36 months, I just sat and thought for a bit. David and Elizabeth both had to leave, to go back to their real world work and lives. I sat alone, in my room, thinking about what I had to do. There were calls to make. I had to take a few more days off work to go to BC and tell my Mom, Ray, and my kids. Kate was in Toronto; I would have to phone her.

Then I did something perhaps unwise. As evening set in, I called my ex-wife to let her know. I wanted her to know before the kids, in case one of them came to her for emotional support. It was not a great call. When I told her I had ALS, she responded by saying "You sound like you've been drinking." If I had, would that have made the news any different, any less tragic? I told her this would likely change our divorce and financial settlement. She said "I don't understand." Of course she didn't, she didn't want to.

She did make one attempt, although perhaps less than sincere. She said "Do you want to call off the divorce and come home?" I said no, knowing that going back to her and that house would simply make things worse, not better. Her closing words were, "Then good luck, and good bye." Click.

Those final words cinched the deal. I knew I was done. I was headed from the peak of my life to the bowels of disaster. My life had changed forever. I had ALS.

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