Saturday, 16 March 2013


Here I sit in my Ikea Phoa chair with the leather cushions, laptop in my lap warming my upper legs, coffee at hand nearly done. Outside the sky is a bleak grey that is almost white. There are whiffs of light snow bristling and bustling past my window, rising and falling with the wind as if each flake was a fairy flying by. The snowflakes are not in a hurry, nor am I.

Sitting is something I do a lot of these days. When I get up in the morning I use my walker to get to the bathroom. I sit to have a shower. Then I use my walker to get to the kitchen where I sit to make my coffee. I rest my coffee cup on the seat of the walker and walk it into my living room where I collapse into my chair, look out the window, sip my coffee and wonder. Then, to brave the outside world, I use my wheelchair.

It's not that I cannot stand. As you may have noted, I use my walker inside my apartment, mostly. On really bad days I use the wheelchair to get from the living room to the bedroom. But mostly, in most situations, for the short distances indoors, I use my walker. So I can stand, and I can even pretend to walk.

This is a bizarre disease. By attacking the motor neurons for voluntary muscles, it leaves other parts, like involuntary muscles and ligaments and bones, all intact and functioning. Since it is localized in my legs for now, my hip muscles, my butt muscles, my back muscles and even the partially functioning muscles in my legs allow me to move my legs somewhat. So I can use the walker and use these other muscles to get my legs to go forth and back with just enough lift to clear the tops of the carpet threads. On occasion the dreaded toe-drop gets me and my foot folds in under itself. The walker helps me not fall down.

Standing is certainly still in my repertoire. Yesterday at work I stood up, something that shocked the hell out of a lot of people who had not seen me stand or get out of my wheelchair in any way in a long time. By pushing up with my arms I can get past the missing leg muscles. Once up, it takes almost no muscle activity to remain that way. The ligaments, even the ones damaged when I fell at Christmas, hold my knees mostly in place. My hips and back provide balance and limited leg muscles allow some motion. On the other hand, God help me if I have to walk anywhere or rotate about. That's when life gets exciting.

I can stand, albeit not for long. So I can get things out of the cupboard, I can reach for clothes in the closet, I can stand up to do what men stand up to do. Don't ask me to stand as long as a military guard. Don't dare ask me to walk without a walker or cane. Just don't be surprised when you see me stand as I move from my chair to my wheelchair. Standing up is exciting while I can still do it.

And don't be surprised when I fall down on occasion.

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