The Whispered Roar
— Shawna Barnes

Sixty-one days, 8.7 weeks, two months, or one-sixth of a year — that’s how much time I spent at medical appointments in 2022. When I stop to look at the numbers, it’s no wonder I’ve been experiencing medical burnout. This type of burnout is real and brings a…

Neon green snot runs out of my nose and down the back of my throat. A cough sounds like I’ve been smoking two packs of nonfiltered cigarettes a day. Exhaustion hits a bit differently than it normally does. My eyes are sunken. Crap. I’m normal people sick. Defining degrees of…

“Red light!” “Green light, … red light!” Are you smiling as you remember playing Red Light, Green Light in the schoolyard as a child? I have a smirk on my face as I sit here writing it. The other morning, while scrolling through social media and waiting for my medications…

I’m fat. My body mass index (BMI) is currently 37.9 kg/m2. (The National Heart, Lung, and Blood Institute notes that a BMI of 18.5–24.9 indicates a normal weight, while a BMI of 30 or greater indicates obesity.) According to a 2020 study published in the journal Frontiers in…

Refresh. Renew. Reflect. Reset. It’s the time of year when folks tend to reflect on the months gone by and create resolutions for those to come. Those of us in the world of chronic illness, which includes myasthenia gravis (MG), are no different, although our reflections and resolutions might…

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…