The Whispered Roar
— Shawna Barnes

“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?…

I bought a car last week, and that’s not even the best part. My sales rep is the star of this show. I’d been looking at trading in my 2018 Dodge Grand Caravan for a few months. I loved that van for what it was. It helped us make the…

Note: This column describes the author’s own experiences with intravenous immunoglobulin. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Let’s be real: Living with myasthenia gravis (MG) can be a roller coaster. One day, you’re hunky-dory-peachy-keen, and the…

Listen up, my fellow seronegative warriors. This is your wake-up call. I know the fight you’re in with myasthenia gravis (MG) because I’m in it, too. You’ve been poked, prodded, and told, “But your tests are normal.” You’ve seen the raised eyebrows, felt the silent doubts, and…

Living with myasthenia gravis (MG) can feel like riding an unpredictable roller coaster. Some days, we coast along smoothly, while on others, it’s like the track was built by a mischievous toddler with a love for loops. With fluctuating muscle strength and fatigue, learning to love and care for…

Mornings and I have an understanding: If I allow myself the time I need to ease into the day, things go relatively smoothly. If I don’t? Let’s just say it’s a recipe for disaster. I know myself well enough to acknowledge that because of my myasthenia gravis (MG), I…

This week, I turn 41. Some days, I’ll catch my reflection in the mirror and feel a deep sense of pride in the person looking back at me. I’ll see the strength I’ve built, the lessons I’ve learned, and the resilience that has carried me through these 41 years. Then…

Pride. This short noun has many definitions, depending on its use. I’ve found two primary meanings repeatedly in various memes and articles online: a feeling of deep pleasure or satisfaction derived from one’s own achievements, the achievements of those with whom one is closely associated, or from qualities or possessions that…