It's been more than three years since the last time I walked. Three long years; years where my mobility has been framed by wheelchair access, years where stairs have been beyond me, years where curbs on streets, sills on doorways, slopes in parking lots and so much more have conspired to wear me asunder. Three years have I been handicapped thus.
Over those three years my legs have died completely, or at least almost completely. It is the oddity of ALS that one muscle in my feet still works, the muscle that allows me to move my toes ever so slightly. Even that muscle, however, weakening. My legs have lost so much in other ways, even the ability to move blood up and down from my feet.
Yet all the while, even as my body has been slowly creeping towards complete inability, I have worked hard to maintain an active lifestyle, a life worth living. Losing the ability to walk, to stand, is not losing the ability to live. Losing the ability to jump, run, climb, and even make love, is not losing the ability to live. It's simply a thing in my life which forces me to live differently.
I think life is all the sweeter for losing it. I treasure so much of what I can do these days, look forward with excitement to those things which bring me pleasure. The loss of that which I could do pales in comparison with those things remaining. I can still laugh, talk, smile, eat a good meal, enjoy a good movie, I can still, amazingly enough, drive my truck, go shopping, explore the world around me. I can still travel, assuming I can afford it.
In fact the biggest thing I have lost in those last three years is my ability to afford things. Shortly after losing my ability to walk, I left my work life behind, and the income from that work life. For a while I had my savings, then my RRSP. Now I have nothing, except for a lot of debt. I would love to walk again. I would not sell my soul, but I would pay almost any price, incur any debt.
I've done the best I can in a difficult situation, a situation which would have caused a great many people to give up. I'm not a poster child for fiscal responsibility for sure, but I am fairly certain I am a decent role model for how to live with a brutal, debilitating, terminal illness. I can't walk, but I am still alive and kicking. That's what counts.
You are my hero and I am amazed at your abilty to take things in your stride , such s it is, and your amazing attitude. You deserve a medal my dearest son.
ReplyDeleteThe things you can do, as you listed them, are the most important things that matter every day. They are not diminished by the things you're not able to do. Of course, we all want and expect to have both at our fingertips.
ReplyDelete