I was born with a neuromuscular condition that doctors didn’t really have a name for at the time, as well as hypotonia, which results in poor muscle tone, poor muscle coordination, slow reaction time and learning difficulties. I went through years of physical and occupational therapy, as well as adaptive physical education classes from elementary to high school. During this long period of time, I also battled insomnia that was so bad that I couldn’t stay asleep or even fall asleep in the first place.
Many of my classmates had no idea I had disabilities, since I had been in mainstream classes since the second grade. It wasn’t something I really talked about with them either. I always had trouble making friends, because I didn’t know what to talk about – and perhaps, because of my disabilities, I was more socially awkward than others. I never really had a best friend growing up and remember always feeling like I had missed out on a class in school on making friends. I didn’t know why everyone else seemed to have such an easy time. I tried hard to fit in and listened to some of the same music that my classmates did and was even in Girl Scouts with several of my classmates for five years until the troop disbanded.
Things finally began to improve for me socially in my later years of high school when I hung out with a few girls in my grade, but those friendships didn’t last long after high school was over. I didn’t have much luck socially in my first two years of college either, because I think by then, I was so desperate to have friends that I would become attached to people who took advantage of me and didn’t treat me the way I deserved to be treated.
What has helped me through the years has been the support of my parents, particularly my mom. My mom has been there for me during years of doctor appointments. She was around whenever I needed to talk and she worked at home, so she could be there for me and my siblings. We have always had a very close relationship, and she has done lots of research through the years to see what could be done to help me with my disabilities.
I have found writing to be a great way for me to cope with my social issues and other issues relating to my disabilities. I have been writing seriously since I was thirteen and attended a writing camp one summer at my local community college. I began with short stories but then expanded to novellas. During my high school and college years, writing became something that I turned to whenever I wanted to express myself and I loved those times when I was able to get deeply involved in my writing. The characters I created in my novellas are characters that I continue to work with today. I have conveyed my own feelings about life into these stories and have found it to be an outlet for me. I continue to work on my novellas as a way to unwind and to live vicariously through my characters.
I have found a new purpose recently for my writing through my work with the Turner Syndrome Foundation. When I first began working at the Turner Syndrome Foundation, I thought I was fairly well-educated on Turner Syndrome, a chromosomal abnormality that affects 1 in 2000 females in the United States. Now that I have begun writing articles about the experiences of individuals, I have begun to realize that I still have so much to learn. I have learned that although Turner Syndrome affects everyone in a unique way there are still many similarities in regards to the health issues these individuals are confronted with.
Through my interactions with patients, volunteers, and members of the board of trustees, I have seen first-hand that once you are diagnosed with Turner Syndrome, you find yourself embraced by a community of those who have already been living with it. You realize that you are not alone on your journey to find acceptance and understanding of your condition and that there are so many others walking the same path beside you. I can certainly empathize with those who find themselves on this journey as I too felt alone when I was first diagnosed with my condition. I am still searching for my own community of support that I can count on to help me through any issues I have with my condition.
Writing for the foundation has opened my eyes to the fact that Turner Syndrome and any other disability does not necessarily have to define your life. One woman I wrote about showed me that despite her limitations, her dancing is something that helps her transcend past her diagnosis and show through her movements her grace and elegance. I know that I will continue to learn more about others with Turner Syndrome and I look forward to seeing what insights I am able to obtain through reading about their experiences with the condition. It has helped shape my perspective on life with disabilities and inspired me to help others with disabilities through my writing. Writing continues to be one of my greatest strengths and if I can make a difference in someone’s life through writing about the life experiences of these individuals, I know I have achieved my goal in writing.