My Story Is Not About ALS

Don't let your life get in the way of your living. It's something I live by, every day. It would be very easy for me to settle into a passive life these days, isolating myself and letting the walls of ALS come in closer and closer to me. I have chosen not to do that. I have chosen to live my life as fully as possible regardless of how it crumbles around me.

So many people see me as "inspirational" around this but I am not, not really. All I am is a life-loving guy who wants to live until I die. There are so many people I see who take their life passively, letting life happen to them, blaming their troubles on what life has done to them. It's not victimhood on their part; they've just grown resigned to not getting what they want out of life and seem willing to accept that what they have now is all they will ever have.

In fact it upsets me when people say things like "you're so inspiring". If all it takes to inspire you is a guy in a wheelchair going about his daily life, you must lead a pretty uninspiring life. Perhaps that goes back to my first point. Perhaps they are inspired because so much in their life is bland, tasteless to them. I am not trying to be inspiring; I am trying to live as much as possible before I die.

It would be fair to say that I have been handed a tough deal in these last months and years of my life. There is no doubt that I drew a short straw with ALS. I don't want to be defined by that straw, limited unnecessarily by what life has handed me. I can live, and live well, even with these limitations. That's the real inspiration, not that I can live, but that I choose to live vibrantly, in technicolour instead of simple black and white.

Last night I went out dancing. A number of women asked me to dance simply because they saw me out on the dance floor in my wheelchair. While I would never say no to an opportunity to have fun, I felt almost insulted in a way. Would they have asked me to dance if I wasn't in a wheelchair? I will never know for sure, but I suspect not, mostly because I would likely have asked them first. Being in a wheelchair slows me down a bit.

Still, even though having a handicap does not have to be a handicap, I don't want pity. I don't want to be known as that guy in the chair. I want to be known as that guy who lives a full and active life, that fun guy who loves people, that interesting man with an amazing story to tell. That story will certainly include ALS, but it will also include all the terrific things I have done and have yet to do. After all, I am going to live until I die; I want to continue to live before I die.