As the needle made contact with my arm, I felt a scratching sensation I was familiar with. This wasn’t one of the routine medical procedures I’ve come to dread. I had chosen to do this procedure. I was receiving my third tattoo in as many years over this past summer. Since I was first inked in 2019, tattoos have become a way for me to process the heavy emotions I experience living with a serious condition like Duchenne muscular dystrophy (DMD).

The initial design I choose was simply the word “Brave” spelled out across my left arm. It was something that stood out for a couple of reasons. As I was mulling the ideas I had there was a sports story I became aware of that caught my eye. It was under tragic circumstances that I learned about the passing of professional distance runner Gabriele Grunewald at the age of 32. For several years she had battled a rare form of cancer called adenoid cystic carcinoma. 

In her honor, the phrase “Brave Like Gabe” started to gain traction and today remains the name of a nonprofit supporting research for rare forms of cancer. Her optimistic attitude and fight were inspiring to me. It was a reminder of how brave I’ve had to be. After this realization, I determined that this adjective was something I’d proudly wear on my skin and use for my personal inspiration.

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My second tattoo in 2020 was the 2-word statement “Stay Strong” on my right arm. The idea for the design was molded from one that had been made famous by a favorite pop singer of mine – Demi Lovato. Similar to my previous piece of ink, I felt it could be a fitting description for me. Though my muscles are lacking strength, I believe that the tribulations I’ve endured make me strong at heart.

The third was another one placed on my left arm. This was of a more symbolic nature compared to the words I’d gotten before. The design I had the artist sketch up was a wheelchair symbol adorned by a wheel in the shape of a heart. Often times I think that a person with a rare disease can be defined by their condition – mostly the darker side of it. With this tattoo, I wanted to remember that there might be adverse circumstances I encounter due to my disease/disability, but that doesn’t mean I should stop loving myself and the brighter parts of my life, such as writing to help others.

There have been specific instances where my tattoos were beneficial in some of the ways I intended. For example, I was having a virtual session with my therapist recently and brought up that I’ve noticed I’m having more trouble with eating independently. I told them that this has led me to ask for assistance using silverware despite being hesitant sometimes. Their response was that it was brave of me to have the willingness to ask for this type of help. Hearing this from a provider is not only reassuring, but in this case, it also made the tattoo I have even more meaningful.

Another scenario where my ink has motivated me is when I take a shower. This seemingly simple process has become daunting for me because of my increasingly fatigued joints. It truly takes every ounce of physical energy I have. When I’m sitting in my shower chair I glance at my tattoos that glisten under the water. I find that this makes them appear more pronounced and gives me a sense that I will get through this just like the other times I’ve done it.

I’ve already made arrangements with my usual tattoo artist to get my fourth later this year. The design I choose is of a golden retriever with a floral element. That is my favorite dog breed, and seeing an image of one can improve my mood. And flowers can have several positive meanings. Optimism comes to mind for me.

When battling a rare condition I think your mindset has a lot of power to help. I’m very much aware there will be some bad days though. However, in these moments it’s comforting to have a visual reminder that I’m brave, strong, and capable of showing compassion for myself.