The Unscratchable Itch

 It is said that only the wearer knows where the shoe pinches. But if you want to know how it feels to be trapped in an ALS body, try the following.

Next time you get an itch, don't scratch it.

If an eyelash gets stuck in your eye, don't touch it, let it be.

Drink all beverages through a straw without using your hands, for a day.

Find a comfortable seat and sit through an entire movie without moving an inch.

Communicate a sentence without speaking or using non verbal cues.

I could go on and on but you get the gist. ALS brings along with it, it's BFF that is Discomfort. A general feeling of uneasiness in your own body. Even a paper cut on the pinky finger is enough to make us feel uncomfortable, so you can imagine what is the magnitude of discomfort from a disease that affects the whole body. Firstly there is the feeling of heaviness. My limbs feel heavier to move even slightly, although I have lost muscle. As if I am living on some planet with greater gravitational force than Earth. Secondly there is the feeling of aching all the time. This is because of a combination of dying muscles, non movement, chronic pain from past falls, or sitting or sleeping asymmetrically. Finally there are these random events like a strand of hair flying into my face or my fingers getting stuck under the hem of my tee. One time I had an insect crawling on my arm and I couldn't shirk it off. Wow that was a very humbling experience.

Of course the family takes care that I am placed comfortably and with time you learn the tricks of how to get through the day. Or you invest in pillows or other accessories or build some makeshift contraptions yourself. But mostly you just learn to embrace it and endure it. For example, itches don't bother me anymore. I have become a pro at keeping a poker face through an active itch. LOL

The truth about ALS is that sometimes you simply accept the situation and say "Just smile and wave boys. Just smile and wave."