Monday, March 07, 2005

Levels of Denial with Chronic Illness

Coping with a chronic illness like multiple sclerosis is coping with chronic denial. Whatever level of acceptance, I always seem to come across yet another level of denial. Denial, like relaxation, has an onion-like character, peel away one layer and another reveals itself.

This was brought home to me again this week. I often use hiking poles as a mobility aid. Here’s the rub.

I’ve usually thought of the hiking poles as a personal choice that I make depending on the situation and how I feel at the time. Now it is becoming clear that making a choice based on how I feel at the time contains within it another level of denial. I’ve been denying what is obvious to everyone, including myself, that my walking and my tai chi are two distinctly different modes of movement. I was sheltering a belief that movement is movement and that my tai chi should be crossing over wholesale into my everyday movement. It is not true for me. I move with confidence and ease doing tai chi; I walk like a drunk. Perhaps I will someday walk as well as I do tai chi. But for now, that is not the case.

Recognizing this denial allows me to replace “how I feel at the time” with a protocol. Under all social situations, regardless of how I feel, I use a single pole. (Using two poles is more efficient but flummoxes acquaintances and strangers—“What is this guy trying to do—practice skiing on a city street?”)

Now the pole comes out in every social situation outside the home, providing everyone with a universally accepted social cue. The cane announces that its user has difficulties with walking and balance. People know how to react.

It eliminates the little ways I put myself down when my walking and balance do not conform to social expectations regarding ordinary movement—such as how quickly I get to a door that is being held open or how much space I require to get by an object. I am unburdened by trying to live up to unspoken social expectations regarding how I move and we’re all much more at ease and probably safer as well.

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