The Whispered Roar
— Shawna Barnes

There’s snow on the ground and a nip in the air. The smell of burning wood fills the air, with smoke dancing from the chimneys. Winter has arrived in northern Wisconsin. It’s different from the winters I’d grown accustomed to in Maine; it’s like the winters of my childhood. Growing…

“It really won’t hurt, but it will pull. Your skin will turn yellow. You should be back to normal in a few weeks, but you might not feel 100% for a few months.” What am I talking about? Getting an implanted port to receive infusions. For those of us with…

‘Tis the season! The last month of the year is filled with various celebrations, parties, and gatherings, depending on your family dynamic and your beliefs. In them, people typically come together and enjoy good food with good friends, family, and co-workers. But what happens when you experience bulbar…

Can you believe we’re in the last week of November? To close out National Family Caregivers Month, I thought it might be fitting to hear from my caregiver, as I’ve written enough columns putting words in his mouth. I wanted to give him the opportunity to share his unique…

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…