At a loss for words

By Chantal Lanthier, living with ALS since 2013

At a loss for words

I’m often told that my eyes speak volumes. Good thing, because I don’t have a voice anymore. Of all the losses I’ve had to go through over the past five years because of this disease, my voice is by far the most painful one. We tend to take certain things for granted.

My voice has been extinguished, and all the words along with it. I’m not handling my own silence very well, especially since I used to be a “motor mouth.” This emerging disability is stirring up a muted rebellion inside me—one that I already know is destined to fail. Having only a few words to express my basic needs and wants, which I have no trouble explaining in my head, is pure torture. Losing such a defining part of myself—my ability to interact with other human beings—is tearing me apart. No longer being able to speak has isolated me, thrown a virtual wall up between me and the people I love. Conversations have a way of switching faster than I can make myself understood or express myself. My patience—and that of my caregivers—is really put to the test. My weakening throat and tongue muscles make it hard for me to form words. My pronunciation is really bad. My speech is slowing down, and I can no longer control my volume. Sometimes, my words come out in a whisper, and other times a scream, surprising even me. There’s not much I can do about it.

My jaw closes involuntarily, like a vise, making me grind my teeth and causing pain when I open my mouth. It’s not uncommon for me to wake up in the morning with the insides of my cheeks chewed to shreds.

Sometimes, the anger builds up inside me to the point where I cry with rage. Other times, when I think about happy stories or jokes that I’m not fast enough to tell, I make myself laugh. More and more, my life is happening inside my head. My brain is going 100 miles an hour; I’m still sharp as a tack, even though my body doesn’t cooperate so much anymore.

As my friend, Michel, put it so well, now I need to find my new voice and new path: my inner one. I need to accept this next stage in order to make it through.

Recently, a friend who called my house remarked that my answering machine still has my voice on it—the voice that I’ve since lost. Jocelyn refuses to erase it, and I agree with his decision. So, I can listen to it over and over, if I want to. It’s there on demand, a reminder of the past.

Sometimes, I find being around other people exhausting, just because I can’t talk to them or share my thoughts with them. There’s nothing wrong with my receptors; it’s my transmitters that are finished. I can take everything in, but can’t offer much in return—or at least that’s how I feel. I’ve become an expert listener and the perfect confidante! Someone who hears everything and says nothing!

If I still had my voice, I’d say THANKS a million. Thank you for the lovely day, thank you for this fabulous meeting, thank you for helping me, thank you for your donation, thank you for still being alive. I’d also say a lot of “I LOVE YOUs” to the people closest to me and maybe also…