I am Stacie Votaw – “Can you speak ALS?”

Now speaking, something that was so natural and effortless, is exhausting. I have to strain muscles withering from atrophy in my lips, tongue, cheeks, and throat.

“Can you speak ALS?” by Stacie Votaw (submitted 12/28/22)

When I learned I would lose my ability to speak, I was devastated. But I had no idea how it would happen. Would it go away gradually? Would I wake up one morning and not be able to talk? What would living without speaking be like?

I scoured the Internet, consulted all the ALS websites, read through all the ALS support boards, looking for information to tell me what to expect. What I found was that the one constant in ALS is that absolutely everyone with ALS is different. Some lose the ability within weeks, others within months or years, and some fortunate enough to hang on to at least a partial ability until the end.

For me, I would say I started noticing it was becoming harder to produce certain words and sounds about 10 months ago. I was completely intelligible, but I sounded like I had a mild speech impediment. It would stay that way for months. Every few weeks I would have a few days where it would progress a bit and then plateau for a while.

However, during that time, it greatly affected me. I used voice control to make calls and send texts on my phone because both my hands had become paralyzed. But then my phone couldn’t understand me. So, I lost that freedom. And more and more frequently, people would ask what I was saying. Paralysis had begun taking control of my lips.

In the summer, after I moved to a new residential facility, I got covid. After I came out of it, I felt my speech had degraded substantially. I felt the beginnings of my tongue becoming paralyzed. Every once in a while I would have to use my synthetic voice on my computer to speak a word or two. But it was rare.

In the last month or so, I use my computer about 20% of the time. And that is around my friends and caregivers that are around me a lot. If I’m with someone who is not used to hearing me speak, I may need to use it up to 80% to 100%.

Now speaking, something that was so natural and effortless, is exhausting. I have to strain muscles withering from atrophy in my lips, tongue, cheeks, and throat. I can become out of breath and lose volume as my diaphragm that pushes the air through my voice box is weakening as well. Speaking has become a physical challenge.

Losing your ability to speak is terrible because it means losing your ability to communicate. But it also means losing your identity.

I can no longer engage in casual, effortless conversations.

I can’t contribute to conversations about my own future medical care plan. Because to articulate complex thought or contradiction is essentially impossible to do in real time typing with your eyes.

People smile and nod. But I know they just want to move along. I can tell when they don’t understand me.

I can’t make jokes anymore.

People finish my sentences because they get impatient.

People guess what I’m trying to say wrongly and assume they’ve understood without confirming leaving me invalidated.

My Texas accent, a huge part of my identity, is obliterated.

When I’m typing with my eyes, people will get impatient following along and finish what I’m trying to type. Most times, they guess wrongly.

When there is more than one person in the room, people no longer speak to you and include you like you’re not even there.

My ability to speak dies a little every day. Each time I try to speak, I mourn. Soon, it will die and be gone completely. It’s like watching yourself vanish.

But I am extremely thankful for the technology that will keep me engaged. And I’m grateful for my friends that will still visit me and patiently wait when it’s my turn to speak. And I do so by conversing with my eyes.

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