The Whispered Roar
— Shawna Barnes

Love. It’s a four-letter word that can mean a hundred different things, depending on how and where it’s used. One of the things that sets my husband, Justin, and I apart from some folks is that we don’t wait for Valentine’s Day to celebrate and honor the love we…

It was 11:50 p.m. Wednesday night, and I was just getting ready to head up to bed after a long, frustrating day at the office. Meetings that ran late and frustrating tech issues were among the woes that led me to this point. Yet as I was unplugging for…

Last week, I was asked to respond to “Tell me about yourself” as it related to my disabilities and the help I needed around the house. The request came during an intake meeting to have an outside caregiving company come in to help my husband and me. Even though I…

I live in a little community in northwestern Wisconsin that boasts fewer than 1,000 year-round residents. This fluctuates greatly during the winter and summer tourist seasons. I had concerns about living in such a rural area when my husband and I decided to move from Maine…

Columnist Shawna Barnes discusses air hunger with MG, its causes, how it differs from other shortness of breath, and strategies for managing this symptom.

Would you, could you, on the floor? I could not, would not, on the floor. I will not do it before four. I will not do it in the chair. I simply cannot on a dare … No, I’m not taking a beloved childhood story about ham and eggs that…

Fear. Whether it stems from uncertainty over myasthenia gravis (MG), a lack of support from friends and family, the risk of losing an occupation or vocation, or possible disease flare-ups, living with fear seems to be common in our community, regardless of MG type or severity. And…

How well do you really know your partner? Do you know their food or medication allergies? How about their favorite color? Can you rattle off the things that drive them nuts, both in a good and bad way? If they regularly take medications, do you know which ones? If…

“How do you do it?” I’m asked this question a lot by friends, family, and even new acquaintances. I have myasthenia gravis (MG), so the topic usually comes up in conversation. After small talk, I’ll often end up explaining MG and how it affects me. The question usually follows…

H.I.T. Honesty. Integrity. Transparency. These are three values that I use as principles in my personal and professional lives. They were presented to me as H.I.T. by a friend, a fellow veteran and business owner. I use them when I discuss my life with myasthenia gravis, as well as…

I cried. All day. Usually, no matter the level of sadness or grief, I can shut off my emotions because it’s necessary. Crying is one of the triggers that exacerbates my myasthenia gravis (MG) symptoms. I get droopy eyes and have trouble breathing, and weak bulbar muscles…

“Breathe in. Hold the ball. Breathe out. Stroke the horse’s mane. Breathe in. Repulse the monkey.” OK, so maybe it wasn’t exactly like that, but last week, I tried tai chi for the first time in more than 20 years. I was in high school the last time I’d done…