I Just Never Thought

Every morning when I get up, after spending a good deal of struggle to get vertical and into a sitting position, the first thing I get to see is myself, reflected in the full size mirror doors of my bedroom closet. I get to see my misshapen body, fat belly, flabby thighs, skinny calves, swollen and discolored feet. And I say to myself, "What the hell happened to me?" Perhaps the mirror doors were a bad idea.

After I manage to struggle into my wheelchair, I roll into the bathroom. There I transfer to the toilet, an effort which leaves me seated on the toilet while still wearing my underwear. So I fight to get them off. At that point, sitting there on  my toilet, while I wait for gravity and nature to take its course, I need only turn slightly sideways to see myself in the full wall width mirror on the wall above my sink. I see the cottage cheese musculature that remains in my arms. I see the chicken flap of loose skin hanging where once muscles held sway. I see the sagging eyes, sad with the weight of ALS. And I say to myself, "What the hell happened to me?" Perhaps the full width wall mirror in the bathroom was a bad idea.

After nature finishes what it can, and I finish cleaning up the rest, I get to go back to my bedroom and stare at myself once again. The question changes to an admission. "I never thought it would end this way. I never thought I would finish my life in poverty and shame, struck low by the cruelest twist of fate. I never thought I would be dependent on the charity of my family, of my friends, of the woman I love. I never thought..."

Mornings are not good for me. It would be easy for me to spend a lot of time in self-pity, sadness, even misery, were I to stay in that frame of mind. It would be simple to crawl into a self-created prison of unhappiness. Yet that is what I cannot do. For in so doing, I truly surrender myself to what I have lost through ALS. So I get dressed, once again make the transfer to my wheelchair, once again look in that god-damned mirror, and then I leave that room, and those feelings, behind me.

By the time I am out of my bedroom, by the time I am at the keyboard, by the time I have my first sip of coffee, I begin to look forward instead of backward. Morning is my time of mourning. The rest of the day is for living. As to what the hell happened to me; ALS. As for ALS, I try not to give it much thought.