My previous column titled, “My Ace Scores Are High. How About Yours?” was not written in my typical motivational style. I avoided smoothing over the reality of the likely trigger of my autoimmune battle, because I recognized the need to acknowledge the daily struggles of others who are dealing with Lambert-Eaton myasthenic syndrome (LEMS) and similar diseases.
I’m grateful that I inherited the gift of the written word. Artists need to create — some describe waking up with a compulsion to paint, sculpt, or create music. My art is writing. I awake at dawn with words swimming in my head, needing to be written down. (My mother aptly named me!)
When my career came to a screeching halt three years ago due to my body imploding with autoimmune disease, I discovered a need to give a voice to those with invisible illnesses. And so, “The Battle Within” was born. However, when I meet people who tell me, “Dawn, you’re such an eloquent writer,” I’m often caught off guard because that’s not why I write. I have to write. It centers me. The comments that mean the most to me, however, are from my fellow patients who say that my columns and blog posts bring them hope.
I’ve met many people throughout my life’s journey, some of whom are amazing artists and also happen to be fighting a physical or mental battle of one kind or another. One of these is a new friend with whom I share a lot in common.
Shawna Barnes lives in Thorndike, Maine, and has myasthenia gravis, or MG. I refer to MG as the “sister” to LEMS. Those with MG have antibodies that prevent acetylcholine from being received by the muscle receptors, whereas with LEMS, our antibodies stop acetylcholine from being released from the nerve terminal. MG patients suffer weakness similar to LEMS patients. Shawna has MG, and she is also a disabled Army veteran.
Shawna began to create clay pottery using a wheel until weakness in her legs prevented her from continuing. So, she started hand sculpting instead. She describes her experience: “I loved it and got lost in the process.” I asked Shawna if her sculpting helped her to deal with her illness. “Absolutely,” she replied. “Clay saved me. Now it is my passion and gives me purpose.”
Shawna has challenges with healthcare providers not fully understanding her illness because of its rarity. She shares her experience with flares on social media to raise awareness of invisible illnesses. When she’s not flaring, sculpting, or giving classes on accessibility, she’s teaching others how to sculpt. Shawna Barnes is an American hero in more ways than one!
Shawna was given her service dog, Andy, by K9s on the Front Line. To show her appreciation, she sculpted a replica of Andy to donate to a silent auction to benefit the organization so that other disabled veterans could receive the gift of a service dog.
A literature review published in the American Journal of Public Health looked at the connection between engagement in the creative arts and health outcomes. The authors concluded that, “Through creativity and imagination, we find our identity and our reservoir of healing.”
Those close to me have said that I was incredibly low in the weeks and months after I was forced to give up work due to my health. However, Shawna and I agree that our illnesses have brought us surprise “blessings” — time to pursue our artistic talents and give back. Our endeavors restore the meaning in our lives that our diseases tried to take away.
I encourage you to find a creative outlet that makes you feel good — and pursue it. The satisfaction that I feel when I write a piece that I know will change someone’s life for the better is immeasurable. To hear unsolicited praise about my writing from people I haven’t met gives me a reason to continue my battle despite my worst days, treatment days, and the daily struggle with LEMS. This disease may have taken away my career and financial stability, but it did not erase my ability to make a difference through my words.
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