The Whispered Roar
— Shawna Barnes

How on earth is it the week of Thanksgiving already? It feels like we were just moving to Wisconsin, which happened back in April. We’re already seven months into this new life of ours, and six weeks from the start of a new year. How? Why? Huh? Is anyone else…

Inconclusive: one of the most annoying, aggravating, but reassuring words to anyone with complex health issues. Why reassuring? Because at least it’s not negative. It provides some modicum of validation. Something is showing up on whatever test results have been deemed inconclusive. Why does it matter? Many of us in…

I’d been home from the hospital after my first myasthenic crisis for about two weeks when my husband looked at me as he’d never looked at me before and asked, “Honey, do you need help with showering?” I looked at him and instantly started to cry. Who wants to admit…

There are days when I feel like every day is Halloween because of the way I must live my life while navigating myasthenia gravis (MG). Is it a trick or a treat? Sometimes it’s hard to tell. Stability Now that I’ve been on a solid treatment plan that…

“I haven’t showered in a week. Can you come over and hang out so I can safely take one?” At 38 years old, these were not words I had anticipated having to string together for someone I’ve known for only six months. With my spouse as my…

“I wish I could stay home all day and take naps.” Does anyone else want to reach through your screen and give me a knuckle sandwich when you see that statement? Does it bring up an immediate negative reaction like anger? It used to for me, as well. Until I…

What do you do when life just gets to be too much? Too heavy? If you’re reading this, then I feel it’s safe to assume that you’re a fighter, so you likely do the same thing I do and just keep fighting, pushing forward. There is no throwing in of…

“My pet Fido makes me feel so much better. Where can I get him a service dog vest?” You can’t. Well, you can, but unless Fido is specifically trained to perform tasks related to your disability, you shouldn’t. And I’ll tell you why. I’ve had two trained service dogs since…

The caregiver. The parent. The big sister. The only child. The husband/wife/spouse. The honors student. The executive. The jock. The soldier. The patient. The flaky friend. The chronically ill. These are all titles and roles that society establishes for us, or we establish ourselves. We might be proud to…

Did you know that Sept. 21 is the International Day of Peace? The United Nations established it in 1981, and it’s celebrated every year on that day. When my world’s in chaos, as it’s been for the past several weeks (or months, really), do you know where I turn to…

Today I despise myasthenia gravis. I resent the eight years I had to fight for a diagnosis. I’m jealous of my able-bodied family members. But most of all, I loathe having myasthenia gravis. Some say there are seven stages of grief while other say there are five. Regardless…

It’s something I’ve always read about in my research on myasthenia gravis (MG). I’d always hoped it would never happen to me. I went so long trying to figure out MG that having to go down that road all over again is daunting. Quite frankly, I don’t want to…