Friday 7 August 2015

It's Always Out There

I'm stiff, sore, and weak today. It's one of those days where sitting up is a real challenge, where getting dressed is more exhausting than usual, where my range of motion exercise, those which are performed on me by a care worker, leave me ready to sleep, ready to fall backwards, laying there, wishing I could just stop the whole world.

Yet with all of this, I am up. With all of this I am active, writing, eating, enjoying a coffee. I simply cannot allow this disease to set my agenda. I am going to be tired, always. It doesn't mean I am going to sleep, always. Nor does it mean I have to give up. There are two simple little secrets to living with this disease. The first is always get out of bed. Once you are up, moving about and busy, everything gets more interesting, more involving. Moving makes you feel like moving. The second is to forever try to find the humour in life. The old adage is that humour is tragedy plus time. Quite frankly, it is never too soon to find the humour in almost any situation, even the most devastating. And trust me, this disease ranks pretty high on the devastation scale of humanity.

I am reminded on a daily basis of all the wonderful things which can still happen to me in spite of having ALS, or in some cases, even because of having ALS. I find love in my life, both because of and in spite of ALS. I find adventure in my life, both because of and in spite of ALS. I find laughter, enjoyment, pleasure, all kinds of things, in spite of ALS. It would be easy to dwell, as I am oft wont to do, on how hard this illness is. It only takes a moment to throw me into a spin. So finding and reminding myself of these good things is the single most important thing I can do.

I can still eat; one day I won't be able to. Where is the humour in that? It's easy. There will come a time when nobody can order me to eat leafy greens. It'll all be a blended mush, hopefully with lots of honey or sugar in it. I can still type; one day I won't be able to. Where is the good in that? I will get to learn to use an eye gaze computer, a really cool piece of technology. One day I will not be able to care for myself. How can I enjoy that? Well the truth is that I love having someone living with me. I love the company. When that day comes, I will have plenty of it.

Oh, and by the way, the BC Lions beat the Edmonton Eskimos in CFL action yesterday. That's always a good thing. You see, there is always something out there.

1 comment:

  1. That was very inspiring and true - I had recently read Joe Martin's "On Any Given Day" and he felt the same way you do - I will be praying for you. :)

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