Thursday, January 26, 2006

Vision work

I have been thinking about how to think about the prospect of the Lyme treatment making me recover. You may decide from the foregoing statement that I am a fear-driven, self-control freak. Well, but no. I'm just gifted with a multitrack mind and an invincible spirit. Plus, I'm modest.

Rationally I know that it's quite likely that I have ALS and Lyme, and that curing the Lyme won't stop the ALS any more than closing the barn door helps Uncle Reemus on date night after the horse has run out.

But I decided that it would be a bad move, in terms of strategic emotions, to center my expectations around the reality that Lyme treatment may not stop my ALS. I have decided, instead, to do positive vision work around the idea that this will save me from death.

You may worry that I am setting myself up for a big letdown if this doesn't prove to be the case. Well, prior to diagnosis I might have agreed with you. But my experience with ALS has taught me something that many of you have said, in one way or another, in comments: I am one strong, brave, admirable person. And modest.

I have faith in myself that I can do positive daydreaming about a recovery, AND deal with the reality of decline and death if the daydream does not come true. The past two years have taught me that.

The vision is this:

  1. The antibiotics will make me feel tired and wired. My metrics will continue to decline.

  2. I get the flu or experience some other health problem that makes me stop doing metrics.

  3. Once I recover, the metrics are even lower than before. This continues.

  4. Dr. Quack says that my blood work indicates remarkable improvement. I doubt his honesty.

  5. About three months later, I notice myself walking more smoothly, or with a greater sense of stability. It doesn't show up in the metrics.

  6. Over the next six months, the metrics begin a gradual improvement in one area but not others.

  7. After that, all the metrics save one begins to improve. I maintain a significant 'scar' -- perhaps the weak left hand -- but I begin to feel confident that the ALS has been stopped and is reversing.

  8. I speak out about this to doctors and patients, and the universal response from the experts was that I was misdiagnosed, but that their theory of ALS remains solid.

  9. One day I find myself running to catch a dropped envelope tumbling in the breeze.

  10. Several years after that I am jogging for exercise on a regular basis, slowly and weakly to be sure, but running.

Whether or not it comes to pass, I think it is healthy and wise of me to build this vision.
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