23 October, 2013

Musing About Disability, II

Minority Report
Missing Extremities
Those are not necessary reading prior to reading what follows, but they will offer you a greater context. The image is of the conductor to the LGB train that runs around my Christmas tree - at least after the dog welcomed him home.

Part two of my recent musing about disability.

I know what it feels like to be absolutely unable to meet all of your needs, to be totally dependent upon others. Let me offer you two examples.

About 20 years ago on the occasion of my first major infection, there were very real problems. That infection had been so extreme that part of my body’s reaction to it significantly reduced peripheral blood flow with the consequence that much of the skin, if not all of the skin, on my hands and feet and knees died. As the old, now dead, skin peeled away, it left my new skin or baby skin exposed. That skin that was not yet tough and was quite tender. For a month at least after getting home from the hospital, I could not walk, I could not kneel, I could not hold a book in my hands.

And I recall one occasion when I was lying in bed, and no one was there. I needed to use the toilet. I waited. I waited. I could wait no longer for assistance. I slithered out of bed, for lack of a better term since I could not crawl on my knees, I sat on my butt and just sort of rocked back and forth and inched my way toward the bathroom. Somehow I managed to pull myself up onto the toilet without any handicap bars to pull against. And with just one arm. I put it all in reverse and somehow got back into bed. I don’t like that feeling of helplessness, but I know had the situation been much worse I would’ve simply had to soil myself.

Just over a year ago following another serious infection, I had been on a respirator for a few weeks. I’m was glad that was behind me, but there had, of course, been significant atrophy from the weeks of lying in drug induced slumber. I recall the first time I tried to stand. There was insufficient strength, and I could not do it without others. I could not get out of the bed without others. If I were sitting in a chair, I could not stand up without assistance. Even once I was home, sitting in a comfortable chair, I could not get out of that chair without assistance.

I know what it feels like to be helpless. I’m not sure I would cope well with being fully dependent upon another, and loss of independence is not some place I wish to be. I did have a major advantage, however, because I knew it was temporary.

I knew there would be an end, and that is why I have so much admiration for those individuals with significant challenges who are dependent on others for so many basic needs. They somehow manage to live life, to enjoy life, to laugh, to love in spite of the knowledge that it will never get easier. For many, it has always been that way; their challenges have been there since the beginning. They are remarkable individuals.

So I know what it feels like to be helpless. I know I don’t want to be that way, and I don’t see myself that way. It may be why I feel reluctant to describe my challenges or why I minimize them – because by comparison to others, they just seem small. I still have most of my independence, and there is very little for which I am dependent upon others. Where I do need help, there is much interdependence – at least in the sense that both sides are willing, voluntary participants. It is not yet a necessary interdependence, thank goodness.