The Whispered Roar
— Shawna Barnes

We made it! Seven states, 35 hours, and five weather types later, we arrived at our destination. Moving cross-country is not for the faint of heart, but with a little planning and a level head when problems crop up, it’s doable. Our home sale in Maine had some hiccups…

LOL. Some days all you can do is laugh out loud. In January I got very sick with COVID-19. As I mentioned in a February column, it took a lot out of me, but at the time I was slowly beginning to recover. It’s now the end of March,…

Bulba what? Bulbar muscle group symptoms include losing the ability to speak — every man’s dream come true for his spouse, if ya believe all the comics, memes, and jokes. And it is something my husband and I joke about, mostly because it’s one of the more frustrating…

“Nope. That needs to go in the other box, darling. Don’t forget to label it the way I showed you, please.” “I added dinner with your friends and a dump run to the calendar. Am I missing anything?” Any idea what these conversation snippets are about? If you guessed moving,…

It’s 4:30 a.m. on Thursday, and I have been awake since 3 a.m. My deadline for turning in this column is less than four hours away. Why does this matter? I’ve been wanting to write about the tools that can help those of us with myasthenia gravis (MG) live our…

“It’s just anxiety.” “It’s just stress or PTSD.” “You just need more rest.” For many of us in the rare disease community, these comments aren’t uncommon. As someone with seronegative myasthenia gravis (MG), I hear them almost every time I go to the emergency room. I experience bulbar…

With a prevalence of 14-40 cases per 100,000 people in the U.S., myasthenia gravis (MG) is considered a rare disease. Plus, early-onset MG can mimic other diseases like multiple sclerosis, amyotrophic lateral sclerosis, and others. If a patient is one of the “lucky” ones who has autoantibodies indicative of…

“Let’s talk about sex, baby/ Let’s talk about you and me/ Let’s talk about all the good things/ And the bad things that may be.” Am I aging myself by referencing a Salt-N-Pepa song? Maybe. But I think the topic of sex is important to discuss. Yet it often…

Last month, I began experiencing symptoms of COVID-19. My husband had tested positive two days before that, but we thought I might get lucky because I was fully vaccinated and boosted. Alas, it was not to be, as I tested positive shortly afterward. I am a disabled veteran,…

I wrote last week about how the inaction and silence of others can be deafening. The opposite is also true. When help is offered and the offer is followed up on, it can leave you speechless, humbled, and grateful. And those who step up to help often are not…

One of the hardest things about living with a chronic illness like myasthenia gravis (MG) is the dialogue that doesn’t happen with people we know. The eye rolls we perceive when we try to update loved ones about our health status — whether they’re real or not. Or the phone…

Many of my friends, colleagues, and family members set goals for the year in January. Goals can be personal or professional, interpersonal or financial, realistic or not. What makes a goal realistic, particularly for someone with myasthenia gravis (MG)? It’s a tough question to answer, but I’ll do my best.