Sunday, 29 September 2013

It's My Decision

One of the things that really sucks about having ALS, or any other disease for that matter, is that it does not exempt you from the other stuff in life, the things that make every day life complicated and tiring. If you are lucky, you are well enough to do most things for yourself. If you are declining, you need help but still there are things to be done. And if you are fully dependent, then there is the emotional stuff in life that you will have to deal with. If you are in care, well, that is different. Once you are that far gone, none of this stuff really matters all that much.

The emotional side of life is as complicated and challenging as the physical side. The emotional stuff you have to do is as challenging as moving furniture, preparing meals, doing laundry, banking or any of those everyday tasks. In fact sometimes the emotional stuff is harder than everything, yet no matter how much you lose your body, with ALS there is always emotional stuff.

I have a friend who says "Life may not be fair, but it's good." I don't agree with her. Some days life isn't even all that good. Life is hard, challenging, difficult, and ultimately you die. What on earth is good about that? Life is just life, sometimes good, sometimes bad, always life. As human animals we have this desire for life. It has nothing to do with gods or souls or spirits. It is simply a part of the ecosystem in which we live, where life is omnipresent and insistent. We do not chose life; it choses us.

Perhaps the only real choice we have is death. We can choose when to die. In spite of what religions and those who believe themselves to be spiritually superior tell us, this is not sinful. It may be weak in some cases, but not in all. What about the soldier who throws himself on a grenade to save a child? Is he or she weak? What about the terminally ill patient, kept alive by machines? Were he or she to refuse medical treatment, is that suicide? Is that cowardice? I think not.

The media is filled these days with stories of assisted suicide; it is a timely subject for me. Someday I will have to be brave enough to say that I am done, unless nature takes its course with me first. With ALS there are assistive technologies to keep me going for a long time, yet one day I will be done. Why is it wrong for me to make the only real decision I get to make in my life? Who is any of us to judge another for this fateful and terrible decision?

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