30 minutes to Roz: How bulbar muscle weakness affects my voice

“I’m watching you, Wazowski. Always watching.”

If you’re a cartoon fiend like I am, you likely recognize that quote from “Monsters, Inc.,” said by Roz, an administrator. Roz has a gravelly, smoky rasp of a voice. I’ve used this character as an example of what I sound like when my vocal cords have decided they’ve had enough.

While attending my cousin’s wedding recently, I finally had an epiphany of how to describe what it feels like — not just what I sound like. Because it’s not just my voice that’s affected; it’s a full-on bulbar symptom parade.

You know that little itch you get in the back of your throat right before a cold hits? Or the sore, tired feeling in your throat after you’ve been yelling and cheering at a football game all night? That’s what my throat feels like after just 30 minutes of talking. Not hours. Not a whole day. Thirty minutes. That’s it.

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If I push through it — which I sometimes do because, hey, life’s worth living — my throat starts to feel heavy, like someone slipped a weighted blanket in there. My voice gets hoarse, and suddenly I’m in full Roz mode. I lovingly call it “Rozzin’” now, because if I can’t change it, I might as well name it.

But it doesn’t stop at my voice. It’s not just a sore throat from talking too much. It’s part of something bigger called bulbar symptoms, all thanks to my frenemy myasthenia gravis (MG). The bulbar region in the brain controls the muscles involved in speaking, chewing, and swallowing — basically everything I need to enjoy life and tacos.

When my vocal cords check out, my tongue isn’t far behind. It starts to feel heavy and sluggish, like it’s napping in the back of my throat. Sometimes it even shifts back farther than it should when I’m not talking or eating. It makes forming words harder, eating trickier, and choking more frequent.

The epiglottis — that little flap of tissue that usually keeps food out of my windpipe — gets in on the action, too. When it’s affected, I choke on food more often and aspirate liquids. It’s not dramatic most of the time, but it is annoying. I have to be super mindful of what I eat. Dry food? Big nope. Popcorn? Haven’t had it in years. Chewy things like steak? Only on the good days — the ones right after my intravenous immunoglobulin infusions are when I’m at my strongest.

Going full Roz

And that’s the kicker. For someone like me who loves teaching, speaking, and helping people, this symptom of MG is one of the most frustrating. I could be feeling pretty good otherwise, but the voice, the throat, the eating — they stay steady in their decline during my cycle. It’s the one area that doesn’t bounce back with the rest of me. Predictable? Sure. But that doesn’t make it any less frustrating.

So now, when someone asks how my MG affects me, I tell them: Imagine losing your voice after 30 minutes of chatting. Imagine being afraid to eat popcorn or laugh with your mouth full because you might choke. Imagine having to choose between joining a conversation and preserving your ability to swallow dinner.

That’s what it’s like when my vocal cords “go.” That’s what Rozzin’ feels like. And even though I laugh about it — because sometimes that’s all you can do — it’s a real part of living with MG.

So if you ever hear me go full Roz, just know: I had a good day. I was talking. Laughing. Living. And maybe, just maybe, I’ll be able to rest up in time for tacos tomorrow.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.