Ehlers Danlos Syndrome by Jackson

Ehlers Danlos Syndrome by Jackson - July 2017 Scholarship Essay

Musculoskeletal pain and fatigue from inflammation and swelling around my joints is something that I deal with daily. My hypermobile joints are very lax and easily dislocated. I have very fragile skin that takes forever to heal. I have Ehlers-Danlos Syndrome, also known as EDS, which is a genetic condition that affects the strength and elasticity of muscles, skin, connective tissue, as well as the major organs and blood vessels. I’ve had it since the day I was born but didn’t know until five years ago. Writing and rewriting this essay actually helped me to see my journey.
In June of 2011, at Rocky River, my parents sat in stadium benches watching me take my Advanced Equestrian Test. So overly excited from doing well, that I jumped from my horse rather than dismounting at the block and my parents said they heard me hit the ground from across the arena. That jump was the last straw for my body and catalyst for what was to come. On the car ride home, I fell asleep only to wake up screaming in pain. My parents drove straight to Texas Children's Hospital where I spent the next ten days being poked, prodded, examined and scanned by doctors and specialists as they watched by body rapidly deteriorate. Everybody had a different opinion about what was going on with my body. I was sent home with crutches, pain killers and orders for daily physical therapy but no definitive answers. My large group of friends didn't know what to say or do and I felt like I was having to make them feel better about what was happening to me. Through EDS I learned the difference between quantity and quality when it came to friendships.
I defiantly chose to begin seventh grade using a wheelchair to help fight off my fears and depression and add some feeling of normalcy back into my life. The administrators at my school worked with my parents to create a safe way for me to attend school. I had to find alternatives to activities my diagnosis took away. Rollercoasters became snorkeling, camping means traveling with an air mattress and horseback riding became singing. It took me a few years to realize that my options weren’t limited; they just became different. EDS has taught me that when presented with an obstacle to always look for an alternative.
So, here I am today; I still miss out on a few activities due to my condition. I have to think closely about all my actions and contemplate whether or not my body can handle it and if I did take part, would the consequences be severe. EDS is a physical condition I wear on the inside; rarely can anybody see it. The older I get the fewer people in my life know about the disability I have. I've learned the fewer people that know about my disability the fewer people I have trying to hold me back from my own possibilities. Having EDS is no walk in the park but I have to admit it has made me a well-rounded person. I see the world through empathetic eyes now, because in some small way I’ve shared its struggles. EDS also taught me life's events may shape the person I am but ultimately I decide what my contribution to society will be.