Tuesday, 2 December 2014

It Bites

I ignore it a lot. I hide myself from the reality, blinding myself with blatant willfulness and a fair bit of self medication. I run from it, hide from it. I go on road trips and travel and weekend escapes. But in the end, it always finds me. In the end, it knows where I am. That's because no matter where I go, whenever I get up, there it is with me.

ALS has claimed, or is at least attempting to claim. another part of me. Many months ago I began writing about swallowing mis-coordination. As the months have gone by, I have written about trouble with word formation and occasional problems getting my tongue to shape and form the phrases that I wanted to say. I'm not slurring, but my diction is not what it once was. I am still intelligible, but my conversation needs to stop for the odd dramatic pause while I get my words right. I wrote about coughing and choking, the general crap that goes with this shitty disease.

Over the last few weeks, this gradual progression has made itself known, this loss, the next loss in this journey of loss, has become all the more evident. I am losing fine motor control over the left side of my tongue, cheek, and jaw. To put it confusedly but rather bluntly, the last few weeks have seen me struggle with mastication coordination.

The truth is, I really wish that was as salacious as it sounds. It would be wonderful if my current struggles truly did involve some sort of hand-eye coordination issue. Alas, it is not so. The new beast that arises within the failing that is me, is my new inability to eat a meal without chewing on my tongue or my left inside cheek. I bite myself, and not in a good way. I bite myself, and not for fun.

It's been a while coming. I've seen the shadow of this on the horizon. I've struggled with control while talking. I've coughed and swallowed the wrong way more than once. Over the recent days and weeks, it has become clear. My ability to talk, chew, kiss, bite and generally use my mouth is failing. I would say it sucks, but I am not entirely sure of that functionality either.

This is no surprise. Nothing is going to happen tomorrow or over the next few weeks. My current strategy is to learn new ways of eating, new ways of talking, new ways of sucking. This is the first part of a long progression. It is what will happen next, probably long after my arms fail me. The pathway becomes clear. My arms will weaken even more. I will lose my ability to eat, drink and talk. Then, finally, and hopefully, I will lose the ability to breath.

It's not a real surprise, though I did expect my breathing to go first. It's just another part of the progression. I would say it sucks to be me but that is clearly redundant. Let's just say that it bites.

1 comment:

  1. Richard, your blog is the best ALS site I've ever found, first because you are a great writer, and second because you tell the truth. Please keep writing as long as you can.