Bite Your Tongue

My time in hospital has not been relegated solely to the issues of belly problems and vertigo. I went to the ALS clinic on Wednesday. The major reason was to get the MAID process underway, however there were also the usual checks and measurements, one of which is significant.

I have been complaining for some time about loss of fine muscle control of my tongue and lips, especially on the left side of my face, in fact exclusively on the left side of my face. Some around me have dismissed this complaint, telling me I eat too fast, that I should chew more carefully, or that I needed to take smaller bites. What most of them failed to see completely is that my chewing, bite size and speed of eating has remained unchanged for the last 40 plus years, and rarely did I bite myself over those many years.

In the last month or so I have also noticed the slightest feeling of wieght increase on the left side of my mouth. My lips just feel heavier on that side. So I asked the neurologist about it and he confirmed that I have muscle loss on the left of my face. I've also noticed fasiculations across the bridge of my nose, of all places. This confirms that ALS has been attacking my face for quite some time now.

The real horror of this is that I am now forwarned. After ALS has pretty much destroyed my arms, it will go after my head and neck, destroying my ability to eat, drink, speak, even nod my head. It has already started. I will lose all ability to communicate, since, by that time, my hands will have failed me completely. This will be a slow process, giving me the continued ability to know, understand, and feel the pain of this loss daily.

Next time I say something is failing me, please put aside your dismissal and keep your opinions to yourself. If I say something is happening, even if you can't see it, even if you don't believe it, even if you want to find another excuse for it, believe me and try to understand what I feel. Nobody knows my body better than me. My hands shake because of ALS, not aging. My arms are weak from ALS, not lack of exercise. My hands shake because of ALS, not because I am getting old. I bite my tongue and lips because of ALS, not because of how I eat.