The Whispered Roar
— Shawna Barnes

Let’s be honest right out of the gate: Grief stinks. It’s messy, exhausting, and sneaky. And if you live with a chronic illness like myasthenia gravis (MG), grief isn’t just about losing people you love; it’s about losing versions of yourself you never thought you’d have to say goodbye…

Living with myasthenia gravis (MG) means I’ve spent more time in hospitals and clinics than I ever imagined I would. Most of the healthcare providers I’ve met have been kind, compassionate, and respectful. They’ve held my hand through scary procedures, explained complicated medical jargon in ways I could understand,…

Note: This column describes the author’s own experiences with the dietary supplement huperzine A. Not everyone will have the same response to it. Consult your doctor before starting or stopping a therapy. Before I got my diagnosis of myasthenia gravis (MG), I had a whole lot of questions…

Dear myasthenia gravis (MG), This note isn’t easy for me to write, but I think it’s time we break up. I could be cliché and say it’s not you, it’s me. But let’s be real, you’re the star of the show, my dear myasthenia gravis. So it is, unfortunately…

This column describes the author’s own experiences with pyridostigmine bromide. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. A little-known fact about yours truly: When I was enlisted in the U.S. Army as a combat medic, I was studying…

Two hundred measly yards. If you had asked 14-year-old me to swim 200 yards, I would’ve laughed, flipped down my goggles, and knocked it out before you finished the question. I was a distance swimmer. The 1,000-yard and 1,650-yard races were my jam. There were plenty of practices where my…

After every major flare of myasthenia gravis (MG), there comes a stretch of time that feels like limbo. I call it the “gray zone” of healing. It’s that place between being actively sick and feeling recovered enough to do my version of normal things, the things I…

Healing doesn’t always look like rest and stillness. Sometimes it looks like kicking your legs with wild abandon in a murky lake while your husband looks on amused, wondering how his 41-year-old wife suddenly turned into a giddy 10-year-old. I’ve always loved the water, and it’s where I’ve felt the…

I’ve been in survival mode for so long that I forgot what it felt like to just be. To breathe without panic. To cry without consequence. To feel without falling apart. But over the past couple of months, life gave me no choice but to feel everything. And wow, it’s…

It all started during a regular intravenous immunoglobulin (IVIG) infusion, part of my routine dance with myasthenia gravis (MG). I was mid-infusion when my eyelids started doing the gravity tango and my ability to speak and swallow took a nosedive. Drooping, choking, and that unmistakable MG weakness crept in…

I’ve seen these questions pop up in myasthenia gravis (MG) forums more times than I can count: “Why do we get weak? Why do we fall?” If you live with MG, you’ve probably asked it, too — sometimes out loud, sometimes in that quiet moment after your tush…

I used to think stress always looked like a dramatic meltdown. You know, ugly crying, yelling into a pillow, eating a bag of cheese curls while binge-watching trashy TV. (Been there, no regrets.) But stress is sneakier than that. She doesn’t always knock loudly. Sometimes she’ll tiptoe in wearing…