How To Embrace Your Imperfections
The condition I was born with, Epidermolysis Bullosa (EB), is an extremely rare genetic skin disorder that causes injuries or blisters from even minor trauma.Each morning before school, I would bandage my ankles - these were where my blisters and scars were the worst - and then get dressed and walk to the end of the street corner to catch the bus with all of the other children. I never allowed EB to prevent me from participating in the things that I desired to do. Sometimes it made these tasks difficult, but I wanted to be considered “normal,” I wanted to be like everyone else. In the early years of elementary school, I would stare at the beautiful clothing my peers were wearing - frilly pink and purple dresses and skirts that were paired with white stockings. I begged my parents for a pair. The time came when I was in the third grade. I too, was finally going to wear my white stockings paired with my striped black and white dress to school. The white stockings hid the imperfections that were covering my legs. Typically, our class would be taken the school playground, however the equipment was wet so we were taken to the degenerate tennis courts nearby for our recess. I always ran as fast as I could - I wanted to prove to others, and to myself, that I was capable. I ran around the perimeter of the court, chasing the other team, until an aid (similar to a teacher’s assistant) approached me and notified me that I was bleeding. I looked down - my white stockings were now red.
Humiliated, ashamed and angry, I ran to the nurse’s office. I knew exactly what had happened, one ankle had simply knocked into the other, acting as a catalyst to my bleeding. This insignificant action was all it took for my injuries to transpire. I returned to class with my bare, unadorned legs.
At the end of the school day I took my stockings home in a plastic bag. Once my Mom was home from work I told her that I needed a new bandage for my ankles and that my stockings were covered in blood. I was covertly hoping to wear them again, but I later watched my mother throw them away as she explained that they were far too saturated with blood to be worn again.
Discouraged, I returned to wearing jeans and thick pants each day - the rich material in this type of clothing acted as a barrier thus helping to prevent further injuries. The memory of the white stockings stung in my mind for years.
Finally, during the end of my senior year of highschool, I started to conduct my own research on EB. I read countless medical journals and watched the few Youtube documentaries that are available. I noticed that the most of the videos, which typically featured young British children with extremely severe cases of EB, were posted onto Youtube by a channel called DEBRA. I quickly became interested in this non-profit organization, which is an acronym for the Dystrophic Epidermolysis Bullosa Research Association. After a successful phone interview and an exchange of several emails, I was officially welcomed into the DEBRA family. I soon began volunteering in the New York office, where I completed data entry tasks and counted the thousands of wound care items that were donated monthly.
Joining the DEBRA organization had given me a sense of solidarity that I share with thousands of others across the globe. Through my activism within DEBRA, I hope that I have been able to inspire other children with EB, by helping them to appreciate their bodies, no matter how unique they may appear. Today, I am thankful for my disease. In fact, I would no longer trade it for a “normal” body. This lifelong battle has helped me to learn and accept the beauty that being unconventional contains. And most of all, it has taught me to never be afraid to wear my white stockings.