Celebrating My Tattoo Milestone and a Blessing in Disguise

Celebrating My Tattoo Milestone and a Blessing in Disguise

Last Wednesday, July 24, was the four-year anniversary of the day I got my first and only tattoo. One month earlier, I had turned 18 and graduated from high school. I was ready for a tattoo.

(Courtesy of Leah Leilani)

I wasn’t concerned about the needle, as they don’t bother me after years of blood draws and IVs. But I was scared about marking myself for life. I worried, irrationally, that my friends at church would shun me for branding the body that God had given me. 

Many people don’t know this about me, but I love quotes. You could even call me a collector, of sorts. Quotes have gotten me through some of the toughest times in my 15 years with mitochondrial myopathy. One day, my mom suggested that I search for popular idioms online. I found a few that I liked but none resonated with me until I came across “Blessing in Disguise.” It was perfect. In three words it summed up my life and my relationship with my disease. 

Living with a chronic illness is a challenge at times. My cells produce a small amount of energy, which makes it difficult to hang out with my friends as much as I’d like. Because Mito doesn’t affect my outward appearance, I am used to dealing with doctors who think that I’m faking my illness. My life with Mito hasn’t been easy, but I have had some wonderful adventures that might not have happened if I didn’t have this disease. That’s why “Blessing In Disguise” is an apt description of my life. 

I am an artistic person, and I knew that I would nitpick any design that a tattoo artist created for me. I couldn’t give up the reins for something that would be a part of me forever. I wanted something as unique as I am, so I decided to design my own tattoo. 

My board on Pinterest, dedicated to calligraphy and typography, inspired the layout and fonts that I used. I included some flourishes and arrows to break up the design. The arrows represent how life’s challenges can make us feel like we’re being pulled backward, while we’re actually being launched forward into greatness. 

Thankfully, I didn’t have to do much research to find a qualified artist. I had met the artist who’d created my mom’s tattoo a year before. He uses various forms of art including photorealism and American tradition, and his shop had five stars on Yelp. 

Leah getting inked. (Courtesy of Leah Leilani)

Besides being a talented artist, he’s also a nice person, which was important to me, as I wanted my first tattoo to be a positive experience. The last thing I needed was someone swearing in my face while poking me with a needle. 

I anticipated that it might not be easy for him to tattoo me because my body needs to be supported. Sitting upright in an office chair for an hour would deplete my energy and cause a relapse. He moved a heavy-looking dentist’s chair across the room and tilted it back into a lounge position to make me as comfortable as possible. 

I love my tattoo, and I’m thrilled that it’s now a part of me. I wouldn’t change a thing about it. It’s a symbol of how God has worked in my life and the many blessings that have come my way. 

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Note: Muscular Dystrophy 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 another 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. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy. 

Leah Leilani Editor
My name is Leah. I’m 20 years old and I was diagnosed at the age of nine with a a rare form of Muscular Dystrophy called Mitochondrial Myopathy. I’m a former MDA Regional Ambassador and have recently started my own blog. My disease affects my energy levels and I can not get through the day without my wheelchair and taking naps.
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Leah Leilani Editor
My name is Leah. I’m 20 years old and I was diagnosed at the age of nine with a a rare form of Muscular Dystrophy called Mitochondrial Myopathy. I’m a former MDA Regional Ambassador and have recently started my own blog. My disease affects my energy levels and I can not get through the day without my wheelchair and taking naps.

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