Living On Camera

"Look, Ma! No hands!" Or rather, "Look, Ma. I'm on TV." The video camera is tracking me today, following my every move, recording how I live, how I get about, how I get dressed, make coffee, even how I write this blog. It's an odd feeling, knowing I am on camera, yet doing nothing different. I'm not acting; this is real life.

The rest of the day will be easy for me. It's Canada Day. All the stores are closed, so I'm not going shopping. The wine is all bottled, except for Katie's Peach Chardonnay. Maybe I'll bottle that today. It will keep me busy, keep me from sitting on the couch, doing nothing all day. In fact that is my challenge of late. I have too many days where I have neither the energy nor the desire to do anything at all. Sitting on my couch, drinking wine and watching TV seems like a good option.

It's not though. Pointlessness in my life is deadly. Even something as seemingly pointless as sitting on my balcony, drinking a coffee and watching the world go by can bring meaning to me. Seeing activity, seeing life in motion. In a way, that's what the camera is doing too. It's bringing meaning to my life, showing it in action, showing me in motion.

This is something I really want to do; I want to share my story in all its ugliness and difficulty. I want people to know what it's like to have ALS, not just in those late pathetic stages where I will look all crippled and hunched over, or laying in bed completely unable to move, locked into my body. I want people to see that this disease is progressive, that it took me from walking to a wheelchair, and is now taking me from having strong arms and shoulders to weakness throughout my upper body. I want people to see that ALS isn't just the end, that the slow dying starts right from the beginning and keeps on going, right to the end.

I am going to die; it may be from ALS or something else entirely. I may die soon, or I may live for another couple of years. It really doesn't matter. What matters is living. That's the ALS story I want to tell.