Sunday, 7 June 2015

Remembering Standing

I caught myself thinking the oddest thing this morning, while laying in bed trying to work up some sort of enthusiasm for arising. I was thinking "I wish I could still push myself up vertical with my hands so I could at least get the feeling of standing up once again." I didn't wish I could stand up; I wished I could push myself vertical like I used to.

So much time has passed since I last stood vertical on my own two feed, unaided by device or machine; enough time that I have almost forgotten that I could once do it. It is almost an act of will to recall when I last stood tall, the visual no longer comes easily or naturally. I can't actually remember walking without having ALS unless I look at a photograph from beyond five years ago. The last major walking event I recall was in the spring of 2011 when I tripped and fell while out walking with Meaghan, Charlotte, and Kate. Even then I was in the early stages of ALS; the tripping was a sign of toe drop only I didn't know it.

Normal is as normal does. These days normal is being in the chair, not standing up, not walking. I rarely think of myself as not in a wheelchair. The only place I walk is in my dreams. The only place I still sail, climb, hike, run, hunt... is in my dreams. In my dreams, somehow I have ALS but it doesn't seem to affect me. When I wake, I come back to reality, where remembering how to stand up is something in the distant past.

It's not all bad though. Without ALS I would never have met Katherine. Without ALS I would never have known some of the tremendous people who have come into my life in the last couple of years. Without ALS there likely would have been no trip to Europe with Cheryl, no Great Elevator Escape, no plans for Alaska, no drive to San Francisco. I'm not saying I'm glad I got ALS; I hate this disease and what it has done to me, but there are good things and good people. All I have to do is remember them. That's the real challenge.

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