Being born with any medical condition or physical abnormality can be difficult for both the child and the parent. Being born with an incredibly rare condition, though, makes life even trickier to navigate.
In my over 30 years of life, my condition has provided me with some interesting experiences. I’ve baffled doctors who didn’t even know that my condition existed, let alone any details about how it impacts my daily life. I’ve fielded questions regarding my body structure and taken torment from people who found humor in my deformity. Although there are days when I curse my body and the circumstances that caused its peculiar development, my condition has actually enhanced my life in the most interesting ways.
My health condition has taught me flexibility and adaptation. I’ve learned to work smarter, not harder, and accept that there are some things I do differently than “typical” people. People laugh at the fact that I bowl left-handed or that I require minor adaptations to play certain musical instruments, but for me, that’s just the way life is. I’ve learned that where there’s a will, there’s a way. Even if my way looks a little goofy, at least it gets the job done.
My physical abnormality has allowed me to develop understanding and empathy for others. I appreciate people as individuals and try my best to ask how I can best assist them or provide for their unique circumstances. I know how it feels to be picked on or belittled for something you have no control over, and I pride myself on having a heart that loves others no matter what their circumstances my be. I try to be respectful and ask about identity preferences. I strive to know people for who they are, not for what their medical records say.
My condition has taught me the importance of advocacy and fighting for equal rights. Everyone deserves equal access and fair treatment, regardless of their physical or mental makeup. Some of us need clothing or other items built to fit our bodies, while others need accessible buildings that accommodate their individual needs. It’s important to break down society’s “one size fits all” mentality and reach new heights so that everyone feels welcome to the table and represented in their daily affairs.
Although I severely struggle with body image and self-love, my defective body has provided valuable lessons that I truly believe have enhanced my life. Without this deformity, there are numerous aspects of others’ daily lives that I would have never even stopped to consider. I feel aware because of my condition. I see the world with my eyes wide open, and without that awareness, none of us can help make the world a better place.