“If I forget thee, O Jerusalem, may my right hand forget her cunning.” - Psalm 137

People ask me, “How do you feel?”

This is a little different from the “Hi, how are you?” conversation opener we’re all familiar with. “How are you?” is the kind of question people ask without really expecting (or wanting) a lengthy disquisition by way of a response.

Sometimes, though, people really want to know what it feels like to be me these days. Assuming you are one of those people, I will try to tell you.

The best description is that I feel as though the gravity knob has been cranked up. Ever since I first noticed that things weren’t quite right four months ago, it just seemed as though I was heavier. Walking - even simply standing - took much more effort. Today, I feel as though I’m walking on Jupiter (if you can imagine Jupiter having a surface, that is). It takes all my effort to get from Point A to Point B, and those two points are growing closer together daily.

Bending over and picking stuff up? Not fun, but I can do it. Cleaning out the cats’ litter box has turned into a Chore rather than a chore. Jumping? Fuhgeddaboudit.

My right arm, ahh, there’s another story. It was three months ago when the weakness in my right arm and the diminution of the fine motor skills in my right hand began to be not merely noticeable, but downright annoying. We were in that phase of our relocation in which our main activities involved hanging pictures and mirrors, assembling bookcases and furniture, and just plain schleppage: moving a lot of stuff around.

What became obvious was that my right arm was Not Being Helpful.

Picking up an electric drill, nailing picture hangers into walls - all of the myriad, routine tasks of setting up a new residence were becoming agonizingly, frustratingly difficult. And it was getting a little worse every week.

Now, in mid-July, my right arm is still functional, but only kinda-sorta. It depends on what I ask it to do. Position, time of day, and goodness knows what other invisible factors all play into whether it will perform a given task. But increasingly, it is going on strike. It is insubordinate, lazy. It is Beetle Bailey, taking a nap while Sarge shouts orders at him. I give it a command; it does not obey. Despite the fact that I remember Jerusalem, having been there almost exactly six years ago, my right hand is definitely in the process of forgetting her cunning.

Sometimes lifting a simple coffee cup feels more strenuous than bench-pressing 100 pounds used to be - the cup might just as well be welded to the table. Fortunately, my left arm can pick up the slack... for now.

I am gradually learning to function as a lefty. That’s hard work, too. Try shaving while (mostly) using your non-dominant hand. Don’t forget the styptic pencil.

The good thing? It’s not painful. Not crampy. My muscles twitch pretty much all over, but that’s mostly noticeable as I lie in bed at night. These gentle muscular fasciculations aren’t a source of discomfort - just a reminder that, gradually, the nerves that connect my voluntary muscles to my brain are quietly dying, so those muscles just talk to themselves.

So: it doesn’t really hurt, mostly. It’s just damned difficult.


  1. This helps me understand the gravity of the situation.

    (Someone had to say it.)

  2. Steve, I know it doesn't help everyone....and I'm certainly not one to believe in any kind of "magic cure" for anything. But there have been some pretty good studies about the effects of marijuana on slowing the process of ALS....I'm sure you've seen the vids with the older gentleman with Parkinson's....nothing short of amazing. Just throwing this out there. Let the jokes begin, but just trying to think of ANYthing, as I'm sure you have.

  3. Just a note, your nephew is adamant about not giving up. He DEMANDED your BIL and I to quit it. He reminded us that there are stem cell research studies, technology flying near the speed of light, and other things. There is something to be said for the young. I want to push that in front of you, and remind you to never give up HOPE.

  4. Steve - two weeks ago I was in Conn. visiting my brother. He lives on a small pc. of property in Bethlehem. My niece lives with them. She is a 'natur-path' licensed in CA - kinda a little bit of medical cultures from around the world. After some research, she found that there are many different kinds of therapy treatments. That being said, most of the advanced work is being done in... Israel. yup. Just thought I would throw that one at you anyway.
    Be safe.


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