The Whispered Roar
— Shawna Barnes

When living with myasthenia gravis (MG), sometimes even the simplest tasks, such as choosing a hairstyle, can feel like climbing Mount Everest. Today, I’m diving into the world of hair — short and long — and how each style can affect one’s daily life. I’ve rocked both —…

I’ve never been one to be afraid of insects of any kind. Growing up as a farm kid and then becoming mom to a boy helped rid me of all “ickiness” factors of the sort. Until the end of August, that is. I was outside The Nook (my business),…

I’m not ignoring you. I’m just ignoring the chance to talk to you on the phone. Cue phone ringing beside me. I look at caller ID and identify that it’s not an emergency. *send to voicemail* Then I wait and see if the caller actually leaves a voicemail or tries…

I’ve never understood how other people with myasthenia gravis (MG) can live in warm climates. One of the things that exacerbates my MG symptoms the most is heat. This summer, I’ve taken it upon myself to use all the tools I’ve acquired over the last 10 years…

What’s the first thing that comes to mind when someone tells you they’re “doing the carnivore diet”? If you’re like my husband, who works in the fitness world, it might just be an eye roll. If you’re a vegan or vegetarian, it might be disgust. What if I told…

“Review scientific articles only and summarize the content to explain what treatments are available for a person with myasthenia gravis experiencing breathing difficulties due to diaphragm and intercostal weakness.” This was the question I posed to Microsoft’s Copilot software, the company’s version of ChatGPT, both of…

The past 12 months have been eye-opening for me, bringing opportunities to accept hard truths about my mortality and independence while living with myasthenia gravis (MG). Both of my husband’s parents passed away in the span of just 18 months: his father on Halloween in 2022 and his…

The first time I heard those dreaded words, “You have myasthenia gravis” (MG), I felt such relief. That was quickly followed by an intense desire to learn everything I could about the condition. One of my biggest motivating factors was a strong desire to prove wrong the doctors who’d…

“Is there anything I need to know to help you in an emergency situation? What does an emergency look like for you?” A client of mine recently asked me those questions as we chatted before getting to work. She had come into The Nook, a shared workspace I run,…

It’s crazy to think that I’m approaching my 30th month of writing my column, “The Whispered Roar,” for Myasthenia Gravis News, as well as my seventh year of raising awareness for myasthenia gravis (MG). Over the years, I’ve grown quite comfortable sharing my story, so I thought…

Because of myasthenia gravis (MG), not only do I have to keep track of the food I eat, the amount I talk, and the schedule for my treatment plan, but I also must pay attention to everything around me. Some days it’s all overwhelming, and I wish I…

As you watch the scene unfold, you see someone standing before a person who’s seated. The person who’s standing swings a pocket watch in front of the other, whose eyes are closed, and chants, “You are getting sleepy. Veeeeeeeery sleepy.” Is this what you envision when someone mentions hypnosis? It…