Thursday, 11 May 2017

Working To Live With A Monster

This disease can be really confusing sometimes. First of all, I am feeling generally good today. I'm up-beat, well fed, reasonably ready for the day. It was one of those mornings were everything worked, where dressing went easily, where Mike made a Fried Egg Sandwich for me. Yet in the midst of all of this, the pain in my right arm, from the shoulder down to the base of my fingers, is enough to cause me to take a couple of Tylenol. I'm even considering Naproxen! It hurts.

So why does the rest of me feel okay, even good, when my right arm, not my left arm, hurts so much? Of course I have one answer for this, a logical one. Given the weakness in my left arm, my right arm is working harder to compensate. I've seen this show before, in my legs as well as in my arms. I'm not sure I know what I was doing yesterday that wore on my so much, but there it is.

I also have an illogical answer for this situation. ALS hates me. It hates me so much that when I have a good day it will do something, anything, to remind me of who is in charge of my body. And it ain't me. I anthropomorphize this disease on occasion. It helps me dislike it even more.

How I spend my day will depend on where I place my focus. If I focus on the pain in my arm, my day will not go well. If I say "to hell with it", and keep going in spite of the pain, it could be a very good day today. I have things planned, things I want to do. I am going out this evening to an event where I will get to see many of my friends. I'm going to stop for Sushi along the way. I'll be using my power chair, so if someone suggests going for a beer afterwards, I'm not worried about driving. My only concern would be wheelchair access at the pub.

I plan on having a good day. As Micheal said this morning, there is strength in my heart as well as in my arms. I don't get a lot of good days, especially as I slide into home base. I'm like a shattered bomber trying to land after getting all shot up in a night raid over Berlin during WWII. Nothing on me works all that well, and most of me is damaged pretty badly. So it has a lot more to do with attitude today, and pretty much every other day.

There are some who mistake this attitude for wellness. They see me active, happy, enjoying myself. They assume it must not be that bad, that I have a long time yet to live. What they don't know is that the effort of having a good day is, in and of itself, monstrous. It would be much easier if I just laid in bed, looking sick, feeling rotten. But what kind of life is that? I choose to enjoy, for as long as I can. Soon enough that will end. I would rather that not happen today. I work hard at being happy. It's worth it in the end. I get a better life.


  1. So very well written!

  2. If a drug was approved tomorrow that would STOP all ALS progression, but not improve your strength at all, and would allow you to live years and years, would you sign up for it?

    1. I'm not really sure what I would do. There is a financial aspect to this as well. It takes money to live like this, and I cannot work even if my progression froze in this place. Even if that were not an issue, the effort to live these days is substantial. If I could get that energy back, then yes. If I had to live a listless life, then maybe, maybe not. Depends on the money.