Physician assisted dying is all over the headlines here in Canada these days. It's a debate which has been going on for years; I remember it from news stories when I was much younger, before ALS had even entered my consciousness. In fact it was this very debate which brought me to awareness of ALS; the person challenging the law at that time had ALS.
It's an interesting thing, that this whole physician assisted dying issue has been driven in many cases by PALS. There are others with terminal, incurable illnesses. These others are certainly on the forefront of this debate. Yet I see an over-representation of PALS in these court cases, taking cases to the Supreme Court, bringing the challenge of their disease to the headlines.
I'm not sure if this over-representation is real, or if it is simply because I am personally more aware of ALS these days. What I do know, for sure, is that PALS are in perhaps the best position of all to understand why someone might legitimately seek to end their life with the help of a doctor. There is no other outcome for us other than a debilitating death. The process through which we go is humiliating, painful, disabling, and terminal. Quality of life diminishes as time goes on, until there is almost no quality to life at all.
Yet even with this, I see many PALS well into complete paralysis living interesting, fulfilled lives. They are out there, using the breathing machines and the feeding tubes, rolling around in their power wheelchairs assisted by care givers, communicating through speech synthesis, staying alive and living as best they can. Look at Stephen Hawking; he makes a tremendous difference with his life, even while fully frozen physically.
I suppose it all comes down to this. Some of us PALS want to stay as long as possible, others want to leave when it suits them. Who are we to judge which is better? Ultimately death comes to all of us. All I want, all any of us want, is a chance to lead a life with some dignity, and to have the same in death. Is that too much to ask?
I don't think it's too much to ask.
ReplyDeleteMe neither...as a fellow ALS sufferer I completely agree!
ReplyDeleteI have always agreed with this philosophy Richard . I do not want you to suffer more than is necessary but I do not ever want to lose you. Talk about the horns of a dilemma. No one wants to lose a beloved child but no one wants that child to suffer. Where do we go from here.
ReplyDeleteWhatever happens my love for you is strong forever.