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Home / Thoughts / Sean's Thoughts / On atrophy

On atrophy

Written by Sean on Wednesday, December 15, 1999

One of the site’s visitors asked me if I was ever going to elaborate on what I’d started writing about, back in July, mostly about atrophy. Naturally, I’d forgotten about it. So I asked hir what s/he wanted to know and the following questions were given. Let’s see if I can answer them properly.

Well, you say you are wheeling full time in public, so I guess you are still walking in private.

Yes, most definitely. While I don’t go out without the chair, once at home, I’m in and out of the chair, without really thinking about it. It is very difficult for the human body to remain motionless, given the choice. Besides, I’ll admit to this: It’s so much easier to deal with daily chores as a walking person than as a wheeler. Not that I can’t do it from the chair, once in a while I do it. Just much more convenient to walk it.

Do I feel bad about enjoying the convenience? Sometimes. Though part of me just can’t see why it would be bad to enjoy what you have. Were I to really be disabled, I’d deal with it. I’m not, hence I get my cake and eat it too. And yes, I’m very lucky about it

Are you still using braces?

On and off. I’ve never really focused on bracing as part of my wannabe desires. Braces have mostly been hedonistic toys for me, and remain so. I guess using braces comes and goes, and I’m in some sort of a lull right now. I do use them every so often, because I need to stand up and I have to be able to explain the no chair factor. In truth, bracing is too much bloody hard work. :-/

Can you stand/walk without them?

Yes, I certainly can. At this point, I would not wish to not be able to stand unaided.

Has the atrophy gotten to where you can no longer cover outdoor distances even if you wanted to?

No, it hasn’t. Nor do I want it to get to that point. Remember that if it goes too far, I might not be able to come back. The reversible aspect of things is still very important for me. I think there would be too great a deal of guilt were I to actually be forced to wheel, by my own doing.

Are there other effects that you did not foresee, or that might not occur to someone who has not had the experience (like me)?

Yes, plenty of them… Osteoporosis for one. Bone mass goes rather quickly when the body is not used the way it was designed to. One of the things that keep up bone mass is repeated weight bearing.

Another one is shortening of tendons. I can feel hip tendons and knee tendons getting tighter. I’m nowhere near the point of being bent in one shape, though I certainly can feel that I’m not as flexible as I used to be.

Are you still giving the cause as TM?

Never really have. Except for that one time when I had to pass a physical exam. I’ve tended to present myself as having a traumatic spinal cord injury. Had I thought ahead, I would probably presented myself with Transverse Myelitis, or Mulstiple Sclerosis. It would explain the lack of scarring, were I to be seen without a shirt on by friends who know me as a wheeler.

How do you find co-workers relating to you, and others who know you only as disabled?

Well, given that most of the people I work with are disabled themselves, or working in that area, people relate to me as just one of the gang, which does wonders. One tends to be accepted at face value much more than in the AB world. On the other hand, when you go out in the outside world, you face everything one might face, attitudinal barriers much bigger than architectural barriers. But I won’t go there, because I could throw myself into a lengthy diatribe…

Is your wife comfortable with how things are developing?

It appears so. She repeatedly reassures me that she’s fine and sees nothing wrong. I think she accepts me much more than I do myself. She says that she sees less and less of a dichotomy between the wheeler and the walker, just the same person in different states of mobility. And that warms my heart.

Is your family accepting you better than they were?

No. I had an encounter with my mother earlier this Summer. I’d sent her a copy of this site. She read it and said she was glad to see that I had some values and that I was still in the process of attempting to soul search. I thought things went well. And then she told me a few things just before parting that really just showed me that she doesn’t get it, probably can’t get it.

My father and I don’t talk about this anymore. Out of sight, out of mind I guess. Other members of my family don’t really know about this.

Of course, there’s the other side of my family, Deana’s kids. They know, and are totaly cool with it.

So, there you have it, a few more thoughts on it. I haven’t gone into too much details right now, I’m sure other questions will arise.