Most of us go through life thinking that very little changes about us, that whatever changes do occur we can handle. I'm like everybody else. To me, aging seemed like a smooth process, like it was going to continue to be a smooth process. Then a set of muscles contracted.

People with Cerebral Palsy are vulnerable to muscle contraction. The muscles that support me when I sit have shortened. Why should this be? How could it happen? My physical therapist says the explanation is not so hard to understand: it's because of years of using a wheelchair. Well, to be more precise, it's because I sit a lot. In the same position. My muscles have adapted to that position.

It seemed to happen all of a sudden, but of course it didn't. It happened slowly, imperceptibly. It crept up on me, and then one day I finally noticed how much harder it was to lie down in comfort. My legs would not flatten to the mattress. There was pain. I ignored it. Then the pain got worse. My legs would not unbend easily when I got into bed. They began to contract, even to spasm. Scarier, I lost the ability to get myself up from the floor in the bathroom, from the floor into my wheelchair. I have always been able to do these things.

What is it like—to lose physical abilities? I have had to deal with losing coping skills because of my experience with long-term depression. I lost things I thought I couldn't live without: a relationship, plans for what I'd do when I graduated from college. But this is new. It makes me feel newly handicapped.

I have had to face unpleasant facts. My diminishing capabilities arise from the very nature of my disability, combined with aging and the inactivity that CP encourages. Looked at in that light, a less flexible body should come as no surprise. When I was younger and less sedentary I was more able to move. As I grow older, the habit (and pain) of moving make me even less able to move. The ill effects accumulate more quickly and with greater force, even if I don't notice them immediately. Thus the cycle builds on itself.

When I found that I could not lie down, could not dress myself, could not get into my wheelchair by myself, I got scared. It was a new and deeper kind of fear. At first the pain was unbearable and I cried a lot. Now my partner, Ross, lifts me a lot. Sometimes he gets up in the middle of the night to help me turn over. Being left alone scares me, too, because I don't know if I'll be able to do things independently or safely.

Ross has taken on a lot of responsibility. He has to carry me to the bathroom, dress me, and help with more personal care than he did in the past. Has this put stress on our relationship? Of course it has. Dependency, perennially an issue between us, now causes stress, fatigue, and tension in different ways. Take sex, for example. Since it's been difficult to move and painful to lie down, we are only now beginning to find our way back to the sex we had given up when I was in the worst pain.

Since the problem became acute about four months ago I have been dealing with it on several fronts. Neurological tests were important. Antispasmodics and painkillers have helped. The most difficult part has been physical therapy and daily exercise. Sound like fun? It's tough, sometimes brutal work, designed to see if I can regain at least some of the abilities I lost.

Right now it's all day-by-day. Sometimes I can do things, sometimes I can't. For someone who has never been a jock or a fitness nut, who has always been a controlling person, this is deeply frustrating. It is a strange and fascinating process, like looking at my life from an entirely new vantage point. I know that I'm benefiting from the work, yet I want to be able to live without this new and annoying reality. But I also know that If I live like I'd really like to I will have to deal with increasingly negative consequences.

I've been reminded in the last few months that CP, like any disability, requires constant vigilance. If I don't work to maintain my abilities, I can lose them. With hard work, I trust that my recent problems will prove to be temporary, and that my dependence on Ross will decrease.

This month I am going to be forty years old, something that seems at once scary and exhilarating. Imagine, I am no longer young! Instead I am moving inevitably toward adulthood and—I hope—maturity. I don't think it's an accident that in the last few years I've wanted to improve my physical fitness and do things like complete my bachelor's degree, lose weight, and plan for retirement.

I assume it's pretty common for people to feel ambivalent and resist change, no matter how sincere their plans. I am resisting, no doubt about that. At the same time I am taking small steps, often grudgingly, toward the change I fear. I do this partly because pain is a good motivator and partly because I am intent on rolling into the future as gracefully as possible.

© 2003 Larry Roberts

 

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Larry Roberts works at his local CIL and is a writer, poet, and anti-oppression activist. Moving into his forties, he has confronted the unpleasant reality that his parents were right to insist that he go to PT and do things for himself. He writes occasionally for BENT, watches too much television and, with his partner Ross Haarstad, engages daily in a stretching routine. Really. His PT insists on it.

 

BENT: A Journal of CripGay Voices/November 2003