I am in Control
I believe I have control, control of my situation, control of myself, control of my future. I’ve come to believe this now, yet it has been a long road to this moment of self-actualization.
On a cold winter’s day in January 17 years ago, I was born, and the prognosis looked grim. “She has a rare genetic skin disorder, known as Epidermolysis Bullosa,” the doctor explained to my mother. “Her skin is very fragile, and tears easily, which will cause blisters and sores.” He gravely warned her my time on this Earth wouldn’t be much longer, when my mother finally took me home. It was deemed a miracle that I made it to my first birthday. As time went on, I surpassed each “expiration date” and here I stand before you, seventeen years old, and laughing in fate’s face.
Even from a young age, I never saw myself as disabled. I went to school, I played, I did homework-there was no convincing me I wasn’t just your average child. To tell me “no” was a sure-fire way to get me to prove you wrong. Several years ago at summer camp, they had just put in a climbing rock wall, and I was determined to make it to the top. I had the will, and we found the way, by duct taping a Styrofoam egg carton to the inside of the harness. Up I went, the blood rushing through my head, the adrenaline coursing through my veins, whispering to myself, “just a little further, don’t look down.” A fantastic mixture of triumph, amazement and sheer terror at how high up I was hit me all at once. As I peered over the wall at the crowd 25 feet below me, cheering and screaming wildly, “You did it! You did it!”, I realized nothing could ever hold me back. This defining moment solidified my belief that whatever goal I chose was mine to take, despite all that was working against me. They still keep that harness so that other children can have that same defining moment, to realize that they can achieve something they’ve only dared to dream about.
From then on, I made a promise that I would never let my EB stop me from living the life I set out to live. No doubt, I was dealt a really lousy hand, but the fact remains that I am in control of how I choose to play it. I’ve always lived by the mantra that I have the EB, it does not have me. The moment I give in, it’s won, and I simply refuse to let that happen.
I’ve had my fair share of challenges and hardships, and when it all seems overwhelming, I think back to that moment on the wall, and my perceptions instantly change. It seems so absurd to stop living my life simply because of a slip-up in my DNA. I go to high school, I drive, I go about living business as usual. That moment on the wall gives me strength to keep up the fight.
My decisions are mine to make. My life is mine to live. I am in control. This, I believe.