The Whispered Roar
— Shawna Barnes

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…

Are you seeing double? I was. And I still do if I push myself to a certain level of weariness. When I first experienced double vision, I thought that either my crappy vision was worsening (I’ve worn bifocals since I was 18) or that my new symptom, a droopy…

Q: What is myasthenia gravis (MG)? A: It’s a neuromuscular autoimmune disease. Q: What is a neuromuscular autoimmune disease? A: It’s when your immune system attacks the junction where nerve cells meet muscle cells. Does anyone else feel like they’re giving a lecture when explaining this thing we…

“A service-connected condition means an illness or injury that was caused by — or got worse because of — your active military service.” Did you know that the U.S. Department of Veterans Affairs, also known as the VA, considers myasthenia gravis (MG) a presumptive service-connected condition for veterans?…

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…