Monday, 18 March 2013


It's been a tough start to my day, the slow, struggling kind of a start that makes me wonder if it really is worth the effort. My legs seem heavier than normal, or perhaps my arms don't feel as strong as normal, or maybe I am just feeling sluggish. I don't know. I managed to get onto my shower seat only to discover that the shower head was in the upper spray position instead of being set for hand-held, after I turned on the shower. I can't reach the shower head anymore unless I am outside the tub, since standing up in the tub is too dangerous. Perhaps I should have tried, I don't know. I just worked with it as best I could.

It took me longer to get dressed than normal. There was nothing different about it, it just took me longer. I emptied the dishwasher and got the garbage ready to go; neither of these were difficult, they just take time. One day I simply won't be able to do even these little things. One day I will lack the strength for the most basic of life's activities. Then what?

I think about it, you know. I mean, given my diagnosis and prognosis, I don't know if I want to go all the way through this. Given the late stages of ALS, the loss of ability and capability, I'm not sure I can deal with it all. So I think about it.

Hell, I don't just think about it. I have a plan. I have the required ingredients and I know the correct dosage. The problem is that by the time I am likely to want to take the pills, I will likely be in some sort of facility where they will take them away from me. I can't leave it so late that I'm in that spot, but I don't want to go too early. So it's a tough call. What to do is easy; it's when to do it that presents the real challenge.

It's more than just the progression of ALS that does this to me. It's the loss of life between now and then that is so depressing. I am single. The more my condition worsens the more I become convinced that I will die single. Even thinking about that as I write this blog is enough to depress the shit out of me.

The truly ironic thing is that while I am strong enough to enjoy life, I don't want to end it. Yet when the time comes that I am ready to end it all, I won't have the strength to do what needs to be done. While I am capable and able, I want to live life as much as I can. I don't know how I will respond when I cannot eat, when I cannot talk, share a laugh, drink a glass of wine. It's frightening.

Depression is the real monster. It breeds fear and thrives on my doubts and insecurities. It's easy to become depressed in this situation. It's easy to slide into the darkness, thinking there is no good reason to keep going, to keep fighting. It's easy to give up. That black beast lives in the corners of my mind, caged, waiting to spring free and heave its dark blanket over me.

The psychologists have no tools to deal with ALS related depression. Pills work but they mess up other thing; bad dreams, no wine, stomach problems. The psychologists don't try to talk you out of it. Instead they focus on "quality of life" and "reasons to live". Right now I have a pretty good quality of life; when I doubt that, I remind myself that loss of legs is nothing compared to loss of arms or loss of speech or breathing. Right now I have reasons to live; my children and grandchildren, my community, a social life.

I will never lose my reasons to live. I will lose my quality of life in a steady retreat. I don't know when, but one day the loss of one will reduce me to where the other is not enough. One day I will be done. Then what?


  1. Ring the bells you still can ring,
    Forget about perfection.
    There is a crack in everything.
    That's how the light gets in..
    Leonard Cohen

  2. You don't need pills. You have your family to live for.