Saturday, 22 November 2014

Happy Anniversary To Me

This is the day, the second anniversary of my diagnosis with ALS. Two years ago today I was in a hospital room listening to a neurologist tell me I had a terminal illness with no treatment and no truly effective cure. All I could do is plan for the ever diminishing condition of my body, to do whatever things I wanted to do "sooner rather than later". I knew about ALS; I knew what it would do. We talked about how I would likely progress, and how I would likely die.

For the first year, things went almost as predicted. The loss of the use of my legs continued in a rapid pace, as it had been prior to my diagnosis. My arms began to hurt, probably more from the increased used put on them by the wheelchair than anything else. Other big changes happened, like the loss of my ability to work, the modifications to my truck, the general process of adjusting my life to this new condition.

The last year has been different than expected. It would seem my progression is much slower than initially expected. The doctors are surprised that I am still driving, still living alone, still looking after myself, mostly. There have been changes, subtle changes, that most people don't see, that most people wouldn't notice unless they were to spend substantial time with me, as do many of my truly close friends. They see the changes; they know.

It's really not the subtle physical changes this year that have impacted me; it's the profound emotional and psychological changes that have really hit home. As this year has progressed, I have seen more and more loss of my "self" in this process. The physical changes, even the most subtle of them, have driven home the diminishment in my abilities, the reduction of my self-image, my self-esteem. While I am loved and surrounded by those who care, I continue to feel the loss of relevance as much as the loss of body.

The first year was physical. The second year was emotional. The third year is yet a mystery although one tinged with the hope of a fourth, the possibility of just a bit more time. That may be the biggest change of all in this last year, that I can actually hope for more. It's better than when it started.

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