Sunday, 20 December 2015

The Old Engine That Can't

I have regular moments when I say to myself "I just can't do this anymore" or "I don't want to do this anymore" or "Why the hell am I doing this". What happens almost immediately after that self concession, is me just getting on with it. I am not particularly brave, and certainly not inspirational. All I am is too stubborn, or perhaps too persistent, to let a little thing like ALS get in the way of having a good time.

These days, however, even a good time takes an awful lot out of me. Last night I found our party very difficult. I loved having my friends here. I loved all the food and drink. I loved the gift exchange. I loved the drama, the humour, the kindle of new and old relationships. I also had to take a time out about half way through where I could go and have a bit of a crying time. I was so physically defeated by the end of it all. I had to just sit for a while, then go to bed. I'm still feeling it today. I almost wish I could claim it as a hangover, but I just didn't, couldn't, drink that much wine.

It's really hard to explain to people the dichotomy of this disease. My body is dying, but not my brain. My pleasure senses are still there; it's my body, my energy level which can't keep up. My psyche doesn't want less, doesn't want to reduce my living engagement. My body does. Eventually the wearing of body becomes the wearing of spirit, but never the wearing of mind.

These days it's my spirit which is becoming exhausted as well, my will to keep going. My desire to stop is no longer theoretical, a whine in the morning against the pains of the day. I spend most of my time now fighting what is killing me. It's not the loss of body. It's the loss of willingness to keep going. I'm losing the desire to just get on with it, the persistence that tells me to quite whining and get going.

I'll be here a while yet, probably longer than I expect, likely shorter than others expect. I know I will leave too soon for those around me, but truth be told, it will be soon enough for me. Like the old locomotive slowly grinding to a drawn out halt on rusty train tracks, I am running out of steam. The fight is going out of me. I can feel it disappearing like the Calgary snows in a chinook, melting away.

I want people to understand that this is not a wish to die; I desperately want to live. Nor is this a desire to give up; I'm still pretty stubborn that way. When you see me, don't try to talk me out of how I feel; you can't. Don't try to tell me how lucky I am to be here still; I don't want to be. Don't try to find all the positives in my life; I know they are there. Just understand that this old engine that could is rapidly reaching the stage where it can't. And I know it.

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