Today is one of those days, those almost normal days, those days where the structure of my life is turned upside down, away from the face of ALS and into the direction of what looks like life for those without this additional gift to their existence. Today is one of those days where I am not defined by my wheelchair and my urine bottle, where my schedule and plan is not set by the morning struggle and effort.
This morning I am not even in my own apartment. I am at a friend's place, writing this late in the morning, well past my usual time, and not even on my own computer. The view from this window, so different than the view from mine, looks out over the vast Alberta southern prairie, up into the foothills with the snow-capped Rockies creating a sawtoothed horizon in the distance. The sky is an impossible blue drifting to an invisible white over the edged blade, the early day haze starting, its opacity blunting the granite teeth.
This morning has been easy. I did not struggle to make coffee in my own kitchen this morning; coffee was made for me as was toast and jam. In other words, like normal people, my day started by getting up and getting out, living outside my contained world. It's like this when I visit with Mom and Ray in Vancouver; they make my morning toast and coffee and shelter me in the kind comfort of their nurturing company. Yet there I see my struggle reflected in my Mother's face; here there is no reflection, just acceptance and the assumption that I am just like everyone else, well almost like everyone else. They have their limitations, I have mine. Normal.
It's the acts of humanity, of quiet generosity, of compassion; these acts are the small steps that make for a nearly normal life, when I don't feel like I am limited or bounded by my disease. To be kind to me is to treat me normally, to visit with me without fuss or flurry, to see what I am and am not, responding with those things that strip away the limiting boundaries of my life. To steal a line, normal is as normal does. For me, the small things, the simple things, the light touch of care; these make life normal.
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