Sunday, 20 March 2016

If, When

When I was first diagnosed with ALS, I had all kinds of "what if" questions. What if I lose this ability or that ability? What if I don't have enough money? What if I can't take care of myself? What will I do if this or that happens to me? All of these questions were based on the assumption that some things would happen with ALS, and other things might not happen.

What I didn't realize then, but certainly realize now, is that everything possible will happen with ALS, eventually, unless you are lucky enough to die sooner. The question I have learned to ask is "what happens when", not "if". What happens when I lose my ability to pick up a glass of water? What happens when I lose my ability to transfer to the toilet seat? What happens when I can't drive anymore?

The last three years have taught me that ALS takes everything, absolutely everything, leaving nothing behind but an empty shell of a body, unfortunately with a fully functioning mind. If I were one of those people who could live inside my own head, that might not be a bad thing. Look at Stephen Hawking; he has lost everything but the twitch below his left eye, and yet he writes these amazing books about the formation of the universe and regularly comments on the condition of our planet and humankind.

I have now come to realize that almost anything is possible, even with ALS. it is possible that I can live for a long time, far longer than I expected. It is possible that I will be able to communicate, both in writing and through a synthetic voice, long after I lose my ability to speak. It is possible that I will love and be loved, even when trapped inside this failed shell that houses my brain.

The real question is what I will do when I get there. It's not an"if"; it's a "when". I will almost certainly get there, to the place where I can no longer hold up a wine glass, cut up a steak, swallow my own food, speak, or even write with my own hands. There are devices to make my life work, when I get there. That's when I get to the really tough question. What will I do when I get there? That's a hard thing to contemplate.

That's why I have to spend more time living in the present, not in the future. It's so much better to think about what I am going to make for dinner tonight, or tomorrow night, rather than what I might do at some potentially distant point in the future when I can no longer eat. I still have a short horizon, but I don't even think about that much these days. "When", just like "if", will take care of itself.

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