The Beginning Is The End

As I was reading the news articles on my phone this morning, I came across a CBC article about a man from Toronto who had gone to Switzerland for assisted suicide. He had left a video commentary in which he noted that he was fortunate to have the resources to go to Switzerland for this, while a great many Canadians suffered and died terrible deaths when an assisted suicide option would have given them more dignity and choice in their lives. He was a lawyer, and an advocate for assisted suicide. The courts have ruled that his video should be played for the current parliamentary hearings on implementation of an assisted suicide law here in Canada.

He had ALS. It seems a great many advocates of assisted suicide have ALS. Perhaps this reflects the sad reality of this disease, how it takes your life slowly, stealing bits of you one piece at a time, eventually leaving nothing but an active mind inside a dead body, persisting in life only through the assistance of machines. For some, this machine assisted life is sufficient. Their internal life, the life of their mind, is enough for them to keep going, to look forward to tomorrow.

I think about myself in that regard. I have already decided that I do not want mechanical breathing, an external ventilator. When I lose the muscles that drive respiration, that will be enough. I am not so sure about a feeding tube; starving to death takes an awful long time and is very uncomfortable, or at least so I am told. Remember too, if you cannot eat, drinking is also problematic, taking away another one of the pleasures in my life. As my Dad once said, if you can't taste the liquor, you are simply drinking for effect.

I was looking at my legs this morning. They are wasting away. I can see the loss of muscle clearly in my upper legs. Oddly enough there is still enough strength in my lower legs that I can lift my heel up using my toes. This strength does me little good except that I can do a pale imitation of tapping my feet, only backwards, heels up instead of toes up. I still have some strength but have long since lost purposeful movement, useful movement.

This is what will happen to my arms. It will take time but I have already seen the beginning, the loss of muscle tone and form. With this disease, to see the beginning is to see the end. Once it starts, it doesn't stop, or at least for most of us it doesn't stop. In rare cases it takes a rest, a real long rest. Even in my case things slowed down for several months last year. It began again, and it will continue, fitfully, until the end. I suspect the reason PALS choose suicide, assisted or otherwise, is just that, that the beginning is also the end.