In the fluorescent light of the examination room my spine curled under the nurse’s outstretched hand as she asked me to reach down and touch my toes. I stood up and she continued to examine my back, running her hands along either side and pushing her fingers into my bones. I didn’t think anything of it; in this moment of silence I remained a joyful girl, filled with youthful ambitions to be a dancer. Suddenly, the nurse broke the silence. I had Scoliosis. A genetic condition had manipulated my body while I was blithely enjoying my flexibility and grace. Worse, while I was still adjusting to this initial news, the nurse said it could be more. She flipped open her medical book to reveal a young boy with gangly limbs, elephant sized ears, a severely crooked back, and sallow eyes staring blankly at me. I came face to face with Marfan Syndrome, which threatened to take away the freedom of my flexibility, confining my body to one crippled position. My mother and I cried on our couch later that day, completely shocked and unsure of the future.
The summer I was diagnosed with Scoliosis was my first time away from home at a ballet intensive program. I was ten years old, tall, and lanky with hyper-extended limbs that allowed me to twist and turn my body into elongated lines. My teachers often told me that I was prone to injury and would have to work harder in order to maintain strength, but these words sounded like a distant bell. It was na’ve to believe I was invincible, but at ten years old I never could have imagined that something was physically wrong with me. As I stood in the nurse’s office, staring at the boy not much older than me whose body had already been destroyed by this strange disease, I felt scared and unsafe.
Marfan Syndrome, a genetic disorder that affects the connective tissues in the lungs, eyes, and most fatally the heart, cannot be diagnosed through one simple test. The initial suspicions of the nurse sucked me into a world of silent waiting rooms and cold examination tables as my parents and I rushed from doctor to doctor to test for signs of the syndrome. As we entered each office or hospital, I felt as if I was handing over my body to the doctor to critique and scrutinize. For that hour or so my future was no longer mine, but theirs to determine. I vividly remember the mad scientist gene doctor with frizzy grey hair and an office cluttered with piles of books and papers. He measured my arm span against a white wall covered with remnants of ink from previous patients whose imprints showed me I was not alone in this. The doctor’s hands flitted back and forth as he made marks along my outstretched limbs. These marks would determine if my arms were too long for my body. With a snap of his ruler the mad scientist declared that mine were normal. Unfortunately, we couldn’t stop there. There seemed to be an endless list of doctors, nurses, and invasive tests.
One by one we crossed the symptoms off our list. I was free again. I didn’t have it. I couldn’t go back to being the na’ve ten year old, but I had regained control over my body and possibly my future. I readjusted very quickly to being a normal girl, my dreams of being a ballerina still intact.
My childhood experience only came back to me recently when I read of Jonathan Larson’s death. I knew Larson as the brilliant mind behind the Broadway show Rent, and when I found out that he had died of cardiac arrest due to Marfan Syndrome, I felt his failed heart become a part of mine. I often wonder if my arms grazed the bleak lines of ink that proclaimed his diagnosis on the gene doctor’s wall. I guess I will never know. But I do know what it feels like to think your life might be taken away from you, and because of this I also know how important it is to hold onto every moment. Like the doctor’s wall, I am marked by the ghostly lines of this experience that can never be erased.