The Whispered Roar
— Shawna Barnes

For the first time since my medical retirement from the U.S. Army in 2011, my myasthenia gravis (MG) is stable enough that I felt comfortable traveling 12 hours to North Dakota to go see my folks. By myself. The last time I got to see my mom was at…

The eye roll. The “I’m not listening but want you to think I am” head nod. The silence. The outbursts. Any or all of these have been responses I’ve received from people who are, or used to be, in my network when I provide updates on my life…

“Umm … are you OK? Why does it look like you’re having a stroke? It sounds like you’re drunk. What’s going on? Why are you choking on our dinner?” When your date has to ask these questions, it’s past time to mention that you have myasthenia gravis (MG).

My hygiene sucks. All of it. It’s better now, but that’s because I swallowed my pride and admitted to my husband (and caregiver), Justin, that I needed more help than I was asking for. He made it easier for me to admit this by asking, “Honey, do you need…

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…