Tuesday, 27 August 2013


I slept poorly again last night, this time not due to shoulder or knee pain, but stomach cramps. I don't know if it was the poutine on the ferry or the beer before bed, but something was, and still is, bothering my belly. I've awoken, after such sleep as I could get, to a misery of a day. There is a grey mist blowing in off the Atlantic, a cold shower lightly soaking and seeping into everything out of doors. It's cold; last night the mercury fell to below 10° Celsius. The short Labrador summer is drawing to a close.

My life is slipping into winter, all to quickly moving from summer to autumn. The seasons of my life are drawing to a close. This emotional realization is difficult, like a weight on my spirit. It bears down on me, holding me from so many things. Each day I see a bit more slip away, I feel a bit lessened by this damnable disease. Sometimes the emotions if this illness are harder than the muscle damage; sometimes the psychic damage is worse than the physical.

The other night I had a dream, an odd dream as so many of them are, the free association of a mind unfettered by the annoying realities of wakefulness. In that dream I was still happily married to Carla, and we were looking for a new house. We needed the house because I was in a wheelchair. This was my first dream where I was no longer walking, the first dream where even my subconsciousness recognized the grim realities of my condition.

When I hit the road yesterday, I drove straight to the Labrador ferry terminal. Then I spent a half-hour just sitting there, wondering if I was doing the right thing, taking off into a remote region where the roads were all gravel, where the people were few and far between. I left, thinking to myself that this was just too risky. It was not a completely new feeling for me, to react to my fears and leave an adventure behind, giving up a new and untraveled road for fear that I might not find a place to sleep at night. I reacted to my fears, something I don't do lightly. Nor was this a panic reaction. This was a lengthy internal battle.

I left the ferry terminal and drove for 45 minutes, continuing this internal debate, the argument of fear over adventure. Then I stopped and asked myself, what would I do if I did not have ALS, if I was not in a wheelchair? I would simply sleep in the cab of my truck, wearing an extra sweater and jacket. So why was I letting fear run my life? These were problems I could solve.

I turned around and headed for the ferry terminal, got on the boat, and here I am in comfortable motel on the Labrador coast. I did not completely give in. I got on the Internet and phone, and for the first time on this trip, I have reservations for the next couple of nights, one in Goose Bay and the next in Labrador City. Fear is not winning; I am responding to risks with a mitigation plan. I am in Labrador, driving a road on which I have never been.


  1. Labrador looks more barren than PEI. Minus 10 degrees would be way too cold for me. I need warmth, the cold makes my muscle weakness worse, I think that's a common feature of ALS. Best wishes on your travels on new roads.

  2. Your life is a road you have never driven my dear but you are brave and not driven by your fear. I am in awe as are many of my friends.
    Much love