When a Subtle Voice Becomes a Roar

Shawna Barnes avatar

by Shawna Barnes |

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Welcome to “The Whispered Roar,” a column where I will describe what it’s like living with a neuromuscular autoimmune disease called myasthenia gravis (MG).

I was officially diagnosed with generalized MG in 2018, although I had been battling symptoms since 2011. My journey to diagnosis is not an uncommon one, and I will frequently be discussing it in this column. Before I do, let me share a little of my background with you.

I am a 37-year-old medically retired, disabled combat veteran. I served in the Army as a combat medic from 2007 to 2011. My health first began to deteriorate during a deployment to Iraq from 2009 to 2010. Today, in addition to myasthenia gravis, I have degenerative disk disease, a seizure disorder, PTSD, osteopenia, a hypermobility joint disorder, a pineal cyst, and cervical dystonia. Those are the heavy hitters. It’s hard to keep up with it all, honestly.

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I’m married to someone who met me after I left the Army, and he’s never known the healthy me. We’ve been together for 10 years, and married for eight. I have a 19-year-old son who is on the autism spectrum and lives in North Dakota. My husband and I have two dogs, Andy and Shadow, and a cat, Piper. Andy is my service dog that I received thanks to an amazing organization in Maine called K9s on the Front Line.

You may be wondering why my column is titled “The Whispered Roar.” If you are unfamiliar with myasthenia gravis, you probably don’t know about bulbar symptoms. One such symptom I experience is a hoarseness in my voice, to the point that I completely lose the ability to speak. I imagine it’s similar to someone who has laryngitis.

If I don’t manage my MG well, this particular symptom will frequently appear, usually after about 30 minutes of talking. I’ve been losing my ability to speak a lot lately. Yet while MG may affect my ability to speak, it doesn’t alter my message, or my passion for advocating for others with the disease who need a solid and steady voice to represent them. Thus, “The Whispered Roar” was born.

Full disclosure: I tend to joke around a lot about my health issues. For example, you may notice that from time to time, I’ll refer to the seizures I have as “the funky chicken,” or the “stop and flop.” Please understand that I use humor as a coping mechanism, because I would much rather laugh than cry.

I also embrace certain words and terminology because I choose not to allow them to have power over me. For example, I consider myself to be “disabled” rather than “differently-abled.” It took me some time to get to that point, however, and I’m sure it will be a topic I discuss in future columns.

Normally when I write or speak, I’ll use a lot of confusing acronyms, because I forget that not everyone knows what I’m talking about. I also swear a lot. But I’m certain that my editors here at Myasthenia Gravis News will ensure that I keep both of these habits to a minimum!

It is my hope that you will find something here to relate to, and that my column will help you understand or cope with this disease a little better. I love to receive feedback, so please share your thoughts in the comments below. I look forward to getting to know you!

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Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Comments

Theresa Meyer avatar

Theresa Meyer

I very much look forward to reading your column.

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Shawna Barnes avatar

Shawna Barnes

Hey Theresa! Thanks for being here! -Shawna

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Bob Richardson avatar

Bob Richardson

I can relate to this and I'm anxious to hear more.

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Shawna Barnes avatar

Shawna Barnes

Hey Bob! Thanks for being here! -Shawna

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Lovina Wolgamott avatar

Lovina Wolgamott

I am so looking forward to reading your articles. I too have trouble with my voice, which doesn't help since I work in an elementary library. I was diagnosed with MG in September of 2020 and Covid in November of 2020. The two have changed my life and my families life dramatically. I also use humor in coping with my health issues. It is so much better to laugh than to cry just like you said. I deal with Rheumatoid Arthritis and MG and I am a Long Hauler with Covid recovery. Still on Oxygen. I am 63 years old with a great support system from my husband and kids and friends. So laughing is how I handle things. Quality for me over quantity.

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Shawna Barnes avatar

Shawna Barnes

Hey Lovina! Thank you for your comment. One of the things I've started doing is learning sign language for the days when I have no voice. It's been a fun activity for my husband and I to learn together. Keep on laughing the night away! Quality over quantity all day every day my friend. -Shawna

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Cathy F avatar

Cathy F

Keep on. The title is perfect.

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Michelle Gonzaba avatar

Michelle Gonzaba

Excellent column, can't wait to read more about your journey!

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2021 Myasthenia Gravis Survey Results

BioNews Survey Infographic

Myasthenia Gravis News conducted a survey from Feb. 11-March 28 to gain greater insight into the characteristics of the MG community and disease management. Results of the survey have now been published. Click on the image to view the infographic, and click here to read the story.