The Whispered Roar
— Shawna Barnes

“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…

When explaining myasthenia gravis (MG) to someone, I often describe it as a “fickle [expletive].” With MG, there seems to be no rhyme or reason for anything. At the start of my diagnostic journey, I asked my healthcare providers what might have triggered the slow, progressive mudslide of…

If you’ve been recently diagnosed with myasthenia gravis (MG) and you’re looking for a website to help you understand what that means, including how to explain to family members what your life is actually like, you’re in the right place. If you’ve been hearing the same sh*t about being…

I admit it. I’m a nerd. I like the science gobbledygook. I thoroughly enjoy digging into the PubMed catalog of biomedical articles, part of the National Center for Biotechnology Information. But even I can admit that when I tried to explain the science behind how myasthenia gravis…

“Disabled.” It’s a word with many meanings that trigger a gamut of feelings. Myasthenia gravis (MG) is considered a rare and disabling disease. It qualifies those of us who have it to collect disability benefits. (The ease of collecting these benefits is an entirely different topic that I’ll not…

Makeup is one of those things that we women use to “put our face on,” so to speak. But when we start having trouble holding our arms up due to myasthenia gravis (MG), applying makeup is one of the first things to go. MG takes many things away from…

For the first time in a long time, I was frustrated with care that I had received. I recently had to go to a hospital emergency room, where, unfortunately, I didn’t feel that I was being heard as I tried explaining that something other than myasthenia gravis (MG) was…

If you were given the gift of nine extra hours a week, what would you do? This was the situation my husband and caregiver, Justin, and I found ourselves in last week. In February, we met with the owner of an organization that we were referred to by the…

Stepping out of the phone booth, I put my glasses on and look around to make sure I’m not spotted. I look to the left and then to the right one more time before hobbling into the darkness and blending in with that which is unseen. What does that remind…