Wheelchair Warrior

I did not mean to become a wheelchair warrior; it's an outcome of ALS. I did not mean to become an accessibility advocate; it is an outcome of ALS. I did not mean to become a champion, a motivator, a light in peoples darkenss; that too is an outcome of ALS. All I wanted to do was share my story, more as therapy for me than for anything else. All I wanted was a way to bitch and complain and cry and laugh, where others might read my story and share that with me.

The CBC in Thunder Bay just interviewed me for their Superior Morning Show. Lisa Laco, the host, did a taped interview with me; she was very gracious and kind. We talked about life in the chair and travel challenges. I am not sure if they will use it or not but it was very interesting to be a part of the process. I love the media; let's face it, I am an attention whore. I love the attention and before I die I hope to have my 15 minutes of fame in a bunch of two minute segments. As a bit player on the stage of life, I want the spotlight knowing full well I won't have it for long.

There is something important in all of this, something more important than my small part. It is the whole issue of ALS awareness. This has, for a very long time, been an almost hidden disease. The great example of this is Stephen Hawking. Most people have heard of him. Most people know he is in a wheelchair and talks through that computer of his. What most people don't know is that he has ALS.

This may trigger lots of questions, mostly around the fatality of this illness. People might wonder why he is still alive while others have died. That is part of the mystery of ALS. We don't know. Sometimes it moves quickly, other times slowly. Sometimes it takes a life in a matter of months, other time it takes years. What really counts is that people start wondering about ALS.

Then there are the unknown yet well known PALS, folks like David Niven and Chairman Mao. There is Kate Middleton, the woman who one day will be the Queen of England, whose grandfather died from ALS. And then there is me, a true unknown, struggling as I do to live until I die. Along the way I plan on telling as many people as possible about life with ALS, life in constant decline, life with humour, joy, pain and pleasure. I will not go quietly into that good night.