By Lana Carlan
I remember vividly the day I was diagnosed with Stickler Syndrome. We were at Boston Children's Hospital. I was 12 years old and my parents and I sat across a big, shiny dark-brown desk from the doctor, who had already told my parents my fate in the hallway a few moments before.
It was the first time I had ever seen my father look small. He sat at one end of the hallway on a bench, slumped over, with his head between his hands, crying. My mother, on the other hand, was stronger than I had ever seen her. She looked at me, walked over, and said, "We all need to talk." We went into the doctor's office, and they broke the news -- they told me I had a rare genetic disorder and that it would define my life. The prognosis was for ear and eye problems, weak joints, and muscles that could cease to function at a moment's notice.
I remember leaning back in the big chair, tilted against the cold, bare wall, with my head touching it just a bit. As I sat there and stared at the ceiling for a moment, the doctor, who was like a second father to me at this point and knew how strong my will was, started asking me questions.
What are you going to do if you go deaf?" That one was easy.
"Learn sign language," I responded, still looking at the ceiling.
"What if you go blind?"
"Learn how to read Braille."
He stopped for a moment, and smiled. That's when I put my chair on all four legs and made eye contact with him. I wanted everyone in that room to know that I wasn't planning on going down without a fight. And I meant business.
A week after the diagnosis, I had my first "episode." I was at school, and suddenly, I lost all of the strength in my hands, arms, and legs. It was as if I had become a rag doll. The first was the scariest, but the pattern was the same with all of them. Suddenly, my arms and legs would turn into jello. Soon after that, the pain would start. It sucked the breath right out of my chest. The back spasms were probably the worst. Sneezing could cause an enormous jolt of searing pain across the middle of my back. The condition was caused by the multiple slipped disks along my spine, pinching the surrounding nerves.
My mother would call the doctor. I would go in and have x-rays. Blood work. Discussions. The worst part was that there was nothing the doctor could do besides prescribe me pain meds and tell me to wait it out and hope I feel better.
I spent the first semester of seventh grade in my bedroom. My parents bought me my very first computer (an Apple 2c ... DOS mode, baby!) and a set of encyclopedias. Despite the pain and the confinement, I maintained an intense desire to learn and absorb as much knowledge as possible and I was still was able to make the honor roll that semester. It gave me a sense of accomplishment to know that, despite all of my physical infirmities, I still had a kick-ass brain.
It was difficult having these potential issues always hanging over my head, affecting my daily life, forever altering the carefree feeling most kids have the pleasure of taking for granted. On top of the fact, with all the other angst of a typical teen, it was not the most comfortable thing for a young girl who'd recently hit puberty to have to wear a back brace and an undershirt instead of a proper bra. What a perk.
When I finally did get the okay to return to school, it was on the condition that I had to be in the brace, as well as a wheelchair, at all times. I had to be carried up and down the stairs, and had limited mobility. The fear was that if I did not take these precautions, I would fall, further damage my weak bones and spine, and make matters even worse
When I came back, I expected to spend a lot of time alone. Who would want to hang out with a girl who couldn't play or run or go outside? But I was wrong. I was shocked to hear my teacher tell me that all my classmates had decided to stay inside the classroom with me for lunch and recess. They had all agreed to sacrifice going to the lunchroom and the playground to stay with me. It helped strengthen my belief that there was nothing for me to be ashamed of and that I had better start realizing that these problems did not define me as a person. People loved and admired me because of who I was, because of my upbeat my attitude, because of how determined I was to deal with this disorder. I had always been a "popular kid" because I never judged anyone. I liked helping other kids, especially the ones who were different, quiet or shy.
Stickler Syndrome, I decided, would not define me as a person. But, it did teach me never to take life for granted and never to sell other people short because you may miss out on a fantastic experience. Having my classmates' embrace me felt empowered me. My good Karma was coming back and it felt good.
I knew I had to follow the doctor's orders. So did my parents. I can only imagine how difficult it must have been for them to deny me of anything I wanted to do. At the same time, being that child was extremely difficult. I was different. I looked different. People would stare at me, this poor little girl, sitting in a wheelchair. I hated being pitied. I knew I couldn't succumb to this existence, or it would take over my life and make my dreams and aspirations disappear. I needed a plan.
In the late spring, I was invited to an end-of-the-year party. Mom and Dad didn't think that it would be a good idea for me to go, but I finally put my foot down and told everyone to go screw. I was going to the party. Furthermore, I was done with the back brace and done with the wheelchair, and there was nothing anyone could do about it.
I also told my mother to take me to
By this time, I had convinced my parents as well as my doctor that I was more mature than my years, and that I had be free to live my life on my terms, and not succumb helplessly to an unclear fate. I had two options - either to lie down and let life pass me by or to fight back. I had decided to fight back.
Flag Photo: Liana at age 8 in Italy.
Text Photo: Liana at age 4