Saturday, 3 October 2015

Unwilling To Stop

ALS is not a disease for the weak. I know that sounds trite, but it takes an awful lot of strength to face up, to keep going, to fight on. As arrogant or self-serving as it may sound, I think the reason I am surviving ALS as well as I am is because I started strong, very strong, in mind, body, and spirit. It's just the way I am, still am. Strong, tough, unwilling to stop.

I didn't know it, but even when I was on the ALS pathway, well after initial symptoms had begun, I was still doing things like picking up trees, hauling out moose and deer from hunting, solo sailing on my boat, climbing hillside, dock ramps, stairs. I was still picking up cases of wine with one hand, still picking up furniture and moving boxes,  Even as I was diagnosed, I refused to give up on stairs; I would crawl up them if I had too.

Now, as I am well down this pathway, I still find myself doing far more "than I should". The mere act of getting dressed causes me to break into a full sweat. Going to the toilet makes my body shake as I engage in full muscular exertion. Transfers to and from my wheelchair leave me out of breath, once again shaking from the work out. Yet I still keep on keeping on. I still keep going.

It's not that I don't think about giving up. In fact I think about giving up every day. There is not a morning goes by when I don't think about just staying in bed. There is not a bathroom moment when I don't think about Depends or a bed pan. There is not a transfer in my day when the thought of staying put doesn't seem more attractive. The problem is, I just don't.

There is one thing I know for sure about ALS; once I stop doing something, I will never do it again. Once I stopped walking, I never walked again. Once I stopped standing, I never stood again. Once I stop getting out of bed, going to the bathroom, feeding myself... once these things are over, they are over for good. I am, as yet, unwilling to stop.

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