Tuesday, 29 September 2015


How often do you want to shout at things, inanimate things, things that happen to you for which you have no response? How often do you sigh, resigning yourself to a reality from which there is no escape, no liberation?

It happens to me almost every morning, especially those mornings when my body is having a rough start, like it did today. I often say that mornings are not easy for me. Mostly I get into the physical part of why that is so. This morning, however, beyond that most troubling of starts to a day, I felt more of the emotional, psychological anger, more of the frustration, even though I was mobile and alive.

I started out with a non-verbal shout. It wasn't quite a scream; that would take to much energy. It was more like a bark, the kind my Dad perfected when seeking to gain the attention of a houseful of unruly children. There were expletives, that's for sure. And it was all inside my mind. I yelled internally, quietly, that I was sick and tired of all this shit, and I didn't want to do it anymore. Then, a few minutes later, I sighed, not out loud but in my mind, saying to myself in my saddest Eeyore tone, "Oh well. It's not like I have any choice in this."

That's the real psychic strain with ALS, that I simply have no choice in the matter. I can't fight it with treatments. I can't stop it with surgery. Unlike almost anything else in life, I have no way around it. I have to go through it. There is nothing I can do, no plan I can make, no tactics I can take. I just have to get up each day and accept that this is what is happening to me.

Of course the rest of the world has that same situation. They wake up each morning with their reality. The only difference is that, for almost all of them, there are choices, perhaps even an end in sight. For pALS like me, there is also an end in sight. There just aren't a lot of choices.

There is one choice I do get to make, the choice to get up, the choice to keep going in spite of that internal voice yelling at me to give up. This is, perhaps, the toughest choice of all. Oh well, as Eeyore would say, it's won't make any difference. I might as well get up.


  1. This comment has been removed by the author.

  2. You have choices Richard, you can get a power wheelchair for mobility, a JACO arm for some independence when your hands stop working, and a ventilator and food peg so you can be there for your loved ones. It's a lot, but I'm quadriplegic now and have all four and I wake up thinking life is good.

  3. No, I've just been blessed by faith and an extraordinary wife.

  4. richard, i'm with you except i don't think mike is a better man, just a touch patronizing.

  5. richard, i'm with you except i don't think mike is a better man, just a touch patronizing.