The Whispered Roar
— Shawna Barnes

Shedding tears in frustration. Missing football games. Giving foot rubs and having heart-to-heart conversations. Being teased because I was in a wheelchair. Raising a boy to become a young man is hard enough without throwing myasthenia gravis into the mix. But I like to think we made the best…

What do you do when you are awakened by your son telling you that a dead tree just fell on his stepdad’s head? For me, a switch flipped, and I went into medic mode, something I hadn’t engaged in for years. Yet I returned to it in a split second…

So you have myasthenia gravis (MG). Some of your friends or family have distanced themselves from you. You take handfuls of pills every day to kinda-sorta function. Life isn’t what it used to be. Get over it. Yup, you heard me. Get over it. But hear me out.

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…