Saturday, 4 April 2015

At Least For Today

I may be in an absolutely beautiful place, with a terrific woman caring for me, with a bed that is easy and plenty of time to rest, yet I am tired and simply cannot shake this edge of permanent depression which follows me everywhere these days. I slept all day yesterday, then got up for all of four hours, then slept through the night, a good sleep. Yet here I am exhausted, not ready to face another day.

It is a testament to the human spirit that PALS don't just give up all over the place. The vicissitudes of fortune and fate drive us so, making our lives immensely challenging, a constant battle with the physical and emotional damage of illness. We die at a prodigious rate, both the young and the old amongst us. We live lives bounded by physical limitation and psychic barriers. Yet even so, we live lives as best we can.

I was looking at my legs this morning, never a good idea for someone who has lost all muscle tone from the waist down. The muscles are slowly wasting to nothingness, disappearing as a part of this disease.  My knees look oversized as the muscles pull back from them, sagging in a bag of skin to the rear of my legs. My lower leg bones are obvious, visible, no muscle protecting them whatsoever. Were it not for the massive gut where most of my fat has migrated, you might look at my lower legs and conclude I was quite skinny.

My thighs are just round bags of squishy meat, the only form for them provided by the pressure of my wheelchair or my bed. They have nothing to offer, not even protection. I am flabby, in the worst possible way. It's happening in my arms now, with a consistent cottage cheese effect on the skin where muscles have atrophied below. It's like cellulite without the fat.

I am slowly going away.

Yet even with all of this, and the persistent wish that I was dead already, I get up. I get up and go. I get up, go, and live a life, challenges and all. I am not sure why I do this. It's a kind of insanity, a kind of self-torture. It would be so much easier to simply stay in bed and do nothing. Yet here I go, off on another day of driving, exploring, road tripping. Somewhere in the midst of all this pain, I will find joy, a moment of happiness, a reason to keep on living. At least for today.

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