Saturday, 15 November 2014

I Am Planning A Party

It's getting closer. I can feel the internal pressure rising as the date approaches. Today it's only a a week away; seven days from the anniversary. This is not my wedding anniversary, not a happy birthday; this is the second anniversary of my diagnosis with ALS. November 22, 2012 was the day, the day they told me I had this dreaded disease; the day they told me there would be no treatment, no cure; that I probably had 36 months or so to live. Next Saturday is it, the birthday of my death sentence.

I have done well in spite of that terrible diagnosis. I am still mobile, still traveling, still drinking too much and eating whatever I like, still chasing after life desperately. I have arrived a week short of month 24, week 103 out of 156 in the prognosis, still living on my own, largely caring for myself, making my own meals, suffering through my own mistakes. I am still writing, still talking, still going.

Even with this positive spin, with a progression slower than expected, with less weakness than expected, with my strong desire to live as much as I can, I still feel the specter of ALS leering over my shoulder every day. I still feel the fear, the pain, even the terror at times, from knowing what this illness will eventually do to me. Each night I say a prayer wishing for my own death. Each morning I awaken to find myself disappointed, still here, still struggling. Each day is worse than yesterday. Each tomorrow will be worse than today.

Still, I can reject some of this anguish. Instead of looking at this awful anniversary with sadness, I plan on throwing a party. I plan on living just a little bit excessively, once again, just because I can. The next seven days are a countdown, not in my death but in my life. Next weekend I will celebrate that I have made it this far, and that I have a chance to make it through year number three.

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