Thursday, 7 April 2016

Looking Good

I am at my Mom's now, after a busy couple of days visiting with family and friends. It's exhausting for me, even on the days with shorter visits and a short drive. It's my third day on the road, and I need a break. Katherine is also paying the price for this adventure, having to get things for me, help me with transfers, move my body around when it gets sore or out of position.

It's hard to explain sometimes, the hidden nature of the effects of ALS on myself, and on those around me. When people see me, they often say "You're looking good." It reminds me of a scene I seem to remember from some old mobster movie, where the body of a gangster is in a coffin with a bunch of goddfella's looking down on him, having riddled him with bullets only a few days before. One of them says to the others "Hey, he don't look too bad."

When people see me, see my body, see me in the wheelchair, what they don't see is the exhaustion, the number of times Katherine has to help me with something, my inability to even lift my own feet up onto the couch, or sit myself up without a grab bar or safety rail. They don't see the stinging, pins and needles pain that plagues my swollen feet. They don't see the shrinkage in my arms, the loose skin covered by my shirt and pants. They don't see the constant feeling of tiredness.

This is not to criticize anyone for finding something positive to say. To most, I really do look good. I really don't look like I am slowly fading away. Add to that my verve and commitment to living life as much as I can while I am still here. I'll be a long time dead; I want to live what I've good while I've still got it.

My life, such as it is now, would be impossible without Katherine, without my family, without my friends. I many ways I don't care what they say. What I really care about is that they are here, with me, supporting me. I look good, that's true. I don't feel good, that's true. I'm still going at it; that's the most true of all.

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