Monday, September 6, 2010
"He compares living with polio to running a marathon. Long distance runners "force their bodies to a level of strength and endurance far beyond their natural capacities .... Our muscles are paralyzed or partially paralyzed. Our muscular systems are able to function at only a percentage of normal strength. They have but a fraction of normal endurance. Nevertheless we have taught them to perform marvellous feats. With exercise, ingenuity ... we have found ways to make our muscles perform what for the able-bodied are the ordinary, easy tasks of daily living. And, often enough, we have found ways to make the way we do these tasks look normal, even easy." Age, Hugh says "comes earlier and with greater impact to the polio. What is no more than annoying to the aging able-bodied can be totally disabling to the polio." He warns, don't waste your time being a Super Crip. "Since I bombed out of Super Cripdom, I have continued to have an exciting, reasonably productive life. The difference is that I now enjoy it."
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Comparing notes with a fellow support group member who also worked until she literally dropped... the reality is that we were either working or resting up to be able to work the next day. It became so second nature that we never realized that we had no Quality of Life until we were no longer able to work and lost our jobs.
Suddenly, I have a Life! If I want to go somewhere on Sunday afternoon, I don't have to consider whether this will keep me from going to work on Monday. If I want to use all my energy going for a walk, my only concern is whether I have enough in reserve to get up the stairs into the house, not if I'm going to spend the rest of the week on the couch. I can enjoy myself without always having one eye on the clock and half my mind on "what will this do to my ability to make it through the week at work?", because that's no longer a consideration. I work at home, and I'm my own boss -- if I don't think I can handle an assignment, I can turn it down and spend the day resting. If I need a two-hour nap to get through the day because I over-extended, I can do that -- no boss is waiting to fire me for sleeping on the job.
I DO perform marvelous feats: I cook, I do laundry, I work, I get myself in and out of the bathtub, some of which my fellow patients can't do at all. Gee, I'm sorry that I can't run a marathon (didn't do that when I was healthy, either) or any of the other things you see SuperCrips doing in the media, but my fellow patients are pretty damned impressed when they hear what I was able to do that they can't.
And if what I am able to push myself to do isn't good enough for you because you see SuperCrips doing more, <bleep> you. My ultimate goal is to survive, not win someone else's approval.