The Whispered Roar
— Shawna Barnes

Last month, when my son, Caden Degen, turned 21, I celebrated it publicly by acknowledging my perspective on what it was like for him growing up, given my myasthenia gravis (MG). This month, he wanted to share his own thoughts, so we communicated via email and phone conversations…

I’ve lost 20 pounds in three months. Crazy, right? In previous columns, I discussed some of the “aha” moments I’d experienced while taking high doses of prednisone to manage my myasthenia gravis (MG) symptoms. I gained weight — a lot of it — and blamed the medication.

Guess what I did last week? I took a shower standing up! Who cares, right? Well, I do. Because it was a win, however small. When you have a rare disease like myasthenia gravis (MG), the ability to celebrate big wins becomes a rare event of its own. Those…

We all do it. There’s a reason we have the phrase “keeping up with the Joneses,” which everyone knows and understands. For some reason, we want the outside world to see our lives through a specific viewfinder, one that shows the highlights with filters. Because of this, as a society…

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…