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.
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.
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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