The Whispered Roar
— Shawna Barnes

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…

Someone recently left a comment on one of my columns that made me pause and lean in. They wrote that myasthenia gravis (MG) isn’t rare; it’s just underdiagnosed. Oofta. That one hit like a whisper with a punch. Because on the surface, it feels true. Many of us with…

“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…

Note: This column describes the author’s own experiences with intravenous immunoglobulin (IVIG) infusions. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. The week, after my cousin’s wedding, I had an intravenous immunoglobulin (IVIG) infusion scheduled — and thank…

A week ago, I packed up my cane, wheelchair, and excitement and hit the road for a cousin’s wedding. It was a six-hour drive each way, the kind of road trip that used to feel impossible when my myasthenia gravis (MG) was more unpredictable. But now that we’re settled…

During a recent weekend, I did something special: I took my son’s girlfriend out for her very first pedicure as a birthday present. It was a treat for her — and for me. It was my first pedicure since my myasthenia gravis (MG) diagnosis in 2018. With MG, trying…

Living with myasthenia gravis (MG) means making daily adjustments, and getting dressed is no exception. What used to be routine is now strategic. Every piece of clothing has to pass the test: Is it comfortable? Will it make my symptoms worse? Can I put it on without feeling exhausted?…