How a Tattoo Inspires Me to Keep Fighting Myasthenia Gravis

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by Retha De Wet |

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(Courtesy of Retha De Wet)

I am quickly approaching my mid-20s, and one truth I have learned from life thus far is that hardly anything is black and white. When you form part of a niche community, like the myasthenia gravis community, you learn what it feels like to constantly battle life in a gray area. You never quite fit in the boxes that society expects you to fall into. This tends to get quite frustrating.

I am an admirer of literature in all its forms and an enthusiast of putting feelings into words. So, I decided to get a black ink tattoo based on my favorite quote from Sylvia Plath’s novel, “The Bell Jar“: “I took a deep breath and listened to the old brag of my heart; I am, I am, I am.” That quote has stuck with me since the first time I read it, which was before falling ill.

I originally wanted to get the tattoo after my thymectomy, but something stopped me. Back then, I was too depressed and feeling far too sorry for myself to get a tattoo that emphasized how happy I am to be alive. A few months later, I had a myasthenic crisis and was hospitalized for about a week. Thanks to intravenous immunoglobulin (IVIG) treatment, I eventually started regaining control of my breathing and could finally sit up on my own. I started doodling on the idea of this tattoo in the hospital, while I was recovering from one of my first brushes with death.

I was not harvesting negative feelings, and I was filled with joy at remaining alive. I finally decided to get the tattoo. Unlike my other tattoo, I chose to make this one visible with everyday clothing. I wanted to see it every day. I purposely put it on my right wrist because that is the hand that feeds me my pills every morning. Whenever I feel sorry for myself, which happens fairly often at 6 a.m. when I struggle to wake up, I look at my wrist, and I carry on. I remember how lucky I am to be able to breathe without medical assistance.

(Courtesy of Retha De Wet)

This tattoo is a battle scar that I chose to get. Doctors have scarred me far too many times, physically and emotionally. So, I decided to get a scar that I love, not one that I needed to learn to love. It was my way of taking control of my body. At that stage, I was not able to control much else due to my poor health.

(Courtesy of Retha De Wet)

Even today, when my health has become closer to stable, I still have bad days — true to the fluctuating nature of myasthenia gravis. Whenever I feel like giving up, I take a glance at my wrist and take a deep breath, because I remember how fortunate I am to be able to do that. Never stop fighting. Life is beautiful.

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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.

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2021 Myasthenia Gravis Survey Results

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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.