The Whispered Roar – a Column by Shawna Barnes

I used to love summer. I wasn’t just a “summer person” — I lived in it. I was an outdoor lifeguard and swim instructor, spending entire days in the sun, water, and heat without thinking twice. My body used to thrive there. Until it didn’t. Myasthenia…

Lying in bed while I type this from my phone, I’m annoyed, possibly even aggravated. I’ve been in this same position for most of the afternoon, impersonating Darth Vader while tethered to my BiPAP. My diaphragm has decided to be a passenger princess again, refusing to do the job…

Myasthenia gravis (MG) comes with symptoms that rarely behave the way people might expect. They tend to be subtle, they’re often invisible, and they get misread constantly — sometimes in ways that are annoying, sometimes in ways that are unintentionally hilarious. In my experience, the following three MG…

When you live with a disease like myasthenia gravis (MG), the unexplainable becomes part of daily life. Symptoms appear without warning, flares derail plans, and a diagnosis can feel unfair, no matter how long you’ve lived with it. Religion is one of the oldest ways humans have tried to…

Being told “no” never gets easier. Even though I’m an adult, that two-letter word has the ability to bring out my inner tantrum-throwing toddler in their “terrible twos.” My husband, Justin, has found a way to lessen the blow so that “no” becomes a …

Myasthenia gravis (MG) has taken plenty from me — strength, stamina, the ability to pretend I’m fine when I’m absolutely not. But here’s the twist nobody expects: Some of the things MG yanked out of my life were things I should’ve tossed years ago. MG may be a…

There’s a strange quiet that settles over a house when two people who usually move in tandem suddenly have to live on opposite sides of it. My husband has been fighting off a nasty head and chest cold. The kind with heavy coughing and congestion that rattles the walls and…

I celebrated Independence Day a little differently this year. While the rest of the country lit fireworks, grilled burgers, and gathered with friends, I quietly celebrated a different kind of freedom — the kind that comes from choosing a new path when the one you’re on stops serving you. Last…

Living your best life sounds like a big and overly simply goal, the kind people put on vision boards or stitch onto throw pillows. But living with myasthenia gravis (MG), I’ve learned that my “best life” isn’t a sweeping transformation. It’s not a grand plan or a 10‑step program.

There’s a phrase I hear more often than I’d like: “Must be nice.” Must be nice to sleep that long, to nap whenever I want, to not have to get up for work. Yeah, it’s real “nice” having a body that forces rest whether I want it or not. Here’s…