My family and I have been fighting NF together since I was a baby. I have had multiple surgeries over the years to try that make me feel as comfortable as possible. My mom also has NF. Although I am grateful for the life she and my father gave me, I don’t want kids. With the current state of the world, I don’t want to bring in a child to this world with NF. In my eyes, I think it would be a lot more difficult to be a child in this era then it was in my childhood.
NF has made me very self-conscious about my body. Even 32 years in, I still have a problem being shirtless around people I don’t know. Even in public, I am constantly stared at and talked about behind my back. It gets really hard but I’ve gained a somewhat thick skin because of it. I try my best not to let it ruin my day if I catch someone staring at or talking negatively about me.
Personally, I use my poetry as a fighting tool. I have been hosting a poetry event for over 5 years and regularly write about my struggles of being different. Even though my struggle is unique to most, it’s still a struggle, and having a group of nonjudgmental people around me has helped a lot.
Even though NF doesn’t define me, it does make me unique among the majority of the population. I work at Quicken Loans in the operations sector and love that my company supports finding a cure for my condition. It makes my heart warm that the company I work for cares so much. I have participated in various events including Quicken’s annual End NF Gala event and 3 years volunteering for the Cupid’s Undie Run in Detroit. I love talking to parents and NF fighters.
In addition to my poetry, I play video games, collect vinyl records and love punk rock.
I also have found the love of my life. We are getting married in 2020 and are moving in our first house in a few months. She is amazing, and my anchor. I am so lucky to have such a support system.
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