Tired Of It All

I'm tired today, rather like most days. Likely I am still recovering from the weekend, what with partying and shopping and all. I am so grateful that I can still do all these things, although my fingers are becoming less and less willing to type it all out. Voice recognition software may be coming soon, although I wonder if not being able to type might be one of those "line in the sand" kind of things. I'm not sure yet. I probably won't be sure until I get there.

A number of small things, plus a few large things, have reminded me over the last week or so that progression continues, things like not being able to open a rum bottle, being unable to pick up my 1L jug of water if it is more than a couple of inches away from me, finding it difficult to open the door of my truck while seated inside, struggling with washing my head while in the shower. There are lots more, many things which increasingly move from merely difficult to impossible. These go along with the increasing general weakness, quick exhaustion, tiredness, you name it.

Again it's that whole "line in the sand" thing. At what point does my quality of life reach a point where I am done? The reality is that life demands you keep living as long as you can. I know a great many pALS who will do almost anything to keep going, including breathing assistance, feeding tubes, and a host of other mechanical interventions. I have always maintained I do not wish these interventions, yet as I get closer I am almost afraid of what that means. Of course it means dying. I just don't want it to be too soon. Actually, I don't want it at all, not from ALS, not from anything.

The only way to win against ALS is to not play. There's the rub. Everytime I see a new research discovery in the field, I find hope leaping within me, hope for a cure before I die. I'm unlucky that way. I am certain a cure or effective treatment will be found almost immediately after I choose to leave this planet. It is almost a surety that my death will bring a startling new discovery which will lend itself to an easy treatment which prolongs life and stops or even reverses the effects of ALS. People should be thanking me in advance, perhaps even urging me to exit, stage left, as soon as possible.

Of course that won't really help. It's my lifelong cynicism leaping to the fore. I might seem like a positive, happy person. That's not completely true. Somewhere in me, ready to leap out, is the angry cynic, looking for something or someone to blame for what has happened to me. There is, as yet, no known cause for ALS, so there is nobody, not even myself, to blame. In the meantime, in spite of all these daily reminders, large and small, of what is going to happen to me, I will try to find the humour, try to find a reason to keep going. But today, boy am I tired of it all.