Sunday, 13 August 2017

LIfe In Grey

I'm struggling today. It may have something to do with me staying up late last night, watching TV and drinking. Or it may just be that I am having one of those days. Perhaps it is related to going two full days without peeing on myself only to collapse into complete failure when we got home from Drumheller yesterday. My catheter let go after I transferred out of the truck when we got home. Or, perhaps, it's just this God damned disease stealing as much as it can from me.

This is despite the wonderful reality of having my children and grandchildren visiting me. I am surrounded by the laughter, the funny behaviour, the smiles of little children. There are toys all over my apartment, with the exception of my room. Charlotte just said "Grandpa, I love you", as if through some psychic channel she understands my moments of struggle.

Meaghan and Lewis are heading down to Lethbridge today, to spend a day with his parents, giving them some precious grandchild time. Lewis' parents are fortunate. They have family close by, children and grandchildren within ready visiting distance. They are both working, his Mom as a teacher and his Dad engaged in farm real estate management. That means summer gives them some free time, time to be with the kids.

Maybe that's it. Maybe their imminent departure is what's got me down. I don't think so, especially since they are coming back here tomorrow night to spend the rest of the week with me. This is one of the longest, most pleasant visits I have had from one of my children in a very long time. So I have no reason to be sad on that account. In fact it's quite the reverse; they are doing everything they can to make me happy during their stay.

Except, of course, that none of us can escape the everpresent oppressive weight of ALS constantly on my shoulders. Even Charlotte senses it, commenting earlier today how she was sad that I was sick. I peed on myself yesterday; Lewis had to help me change my pants. Meaghan did my laundry for me, not because I couldn't do it, but simply because she wanted to help. She has seen how weak I have become.

It is wonderful to have them around. It is sad they have to see me this way. Maybe that's the real story, the reality behind my struggle today. Perhaps I am struggling because ALS paints everything in grey, the pictures of my life permanently tinged into darkness. Such a wonderful visit, punctuated by the reality of ALS. Yes, that is probably why I am struggling today.


  1. I would think even a wonderful time and visit, also bring the reality ...your reality is never completely rosy and sunny... nice post Richard. If I was the good witch Glinda from Wizard of Oz, I'd zap all his crap from you.

  2. Heart rending post, Richard. I wish things were different.