Thursday, 27 July 2017

It's Not Funny Anymore

I got up today, out of bed. It's something I didn't do yesterday. Yesterday I stayed in bed right from morning until night, then took a Zopiclone and slept through until this morning. So I did not write yesterday.

My plan had been to write the saga of how I managed to get a heavy plastic bag of clothing stuck on the back of my power wheelchair, how I managed to get on the floor to cut it away, and how I slung myself back into my PWC. The point would be to demonstrate how difficult life could be with ALS and a wheelchiar, along with how creative I can be in solving problems.

When I awoke this morning I thought to myself how trite, perhaps even unrealistic, that story would be; a piece of hyperbole meant more to entertain than elucidate. Yes, it all happened. No, it would not be as funny as I would write it. Quite the reverse, pathos is more like it. My life with ALS is filled with emotions, all of which leave a very convincing argument about the difference and difficulty of living this pathetic life. It's not funny, no matter how hard I try to cast it that way. It's sad.

So I am in a wheelchair. So what? Thousands of people are in wheelchairs. So I am dying a slow, treacherous death, one inch at a time with miles to go before I reach my final sleep. So what? The whole world is marching down that path. My death is not ugly; in fact it will be a blessed relief. No, the only ugly thing is the manner of my death. It is the indignity of this departure which makes it pathetic. It's the way that ALS is forcing me to live that makes this tragic tale.

It's not always this way. Some days are good; some days are bad. The balance has shifted, as it inexorably must. My goals for each day have fallen away from travel, cooking, entertaining. My big goal now is to get through the day without peeing on myself, to get to sleep without tossing and turning for hours on end, to remember to take my pills, both morning and night. My goal is to get things done without the drama of bags getting stuck to my wheelchair. It's not funny anymore.


  1. Thank you for posting... I kept checking yesterday on your blog. Indeed nothings ever funny with ALS ...

  2. I like your honesty and the way you write. Laura