Tuesday, 26 July 2016

It's A Tough Day Today

One of the markers I have for my own progression is stolen from the book, Tuesdays With Morrie. It's where Morrie says to his friend, "I know this disease doesn't have me as long as I can wipe my own ass." It like that line. It points out with crystal clarity a breaking point, a place where I will have to recognize that living with ALS has overtaken me.

This morning I could not wipe my own ass. I tried. I did a fairly good job, but I just couldn't seem to get it clean. I had to ask Katherine to help me finish the job. This is disappointing, devastating in some ways. It's only a one off, but that's how everything happens with ALS. It happens once, then it doesn't happen for a while. Then it happens again. Then the intervals get shorter and shorter until that failing becomes the new norm.

On top of needing help with cleaning myself today, I needed help sitting up. I've been wobbly for a while now, uncertain when pulling on a shirt, fearing that I might tumble sideways. Today it wasn't uncertainty. I was certain I would fall sideways while pulling on my shirt. I did. I also fell sideways when pulling on my compression socks and when pulling on my underwear. My balance just seems to have escaped me today.

In the end, Katherine once again came to my rescue, stabilizing me, steadying me as I dressed. I still managed to tip over a couple of times, even with her there. I'm a big guy, and like the giant tree at the hands of the lumberjack, once my base is gone I start to tip, and once I start to tip I keep going.

My emotions are fraught as well. I am barely holding it together today. There have already been a couple of bouts of tears, frustration that not only do I have to deal with ALS but I have to deal with the rest of life too. It's such a difficult thing. I really am ready to give up. But then again, no I am not. I just wish all of this were easier.


  1. Thinking of you today,Richard. Because I do believe in God, I thank Him for Katherine in your life.

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