Life as a Zebra

By Victoria Rodríguez  |   From : Miramar, Florida  |   School : Everglades High School

My life story begins on December 25, 2005, at around 8:30am. I was born into a family with my mom, Rosario, dad, Luis, and my sister, Sofia. As it is with most people, I do not remember my early childhood. My childhood was full of happy memories filled with laughter and love. As a child I did gymnastics at the Little Gym and Girl Scouts. At the Little Gym I attended dance camp where I made lots of happy memories. Around the age of 5 years old, I started dance at Academy of Art, where I still dance. As a child I was very active and always doing some sort of activity. Eventually I started Preschool at Montessori Academy. I spent more than half of my life at Montessori. At Montessori I met so many friends and learned many important lessons that have been incredibly useful. I entered Montessori as little five-year-old and left as a matured 14-year-old. I will forever be grateful for the Montessori teaching style because it was the best learning style for me. During 2013 I joined a club 4-H Dream it, Style it, Make it. The club, which I am still apart of, taught me how to sew and have leadership. In Kindergarten I met Adryan who would become for 9 years before she moved away. 

       During 4th grade I met Emma and Aida, who would be my friends until I left Montessori. Because Montessori was a small school, everyone was friends with everyone. Around fourth grade I began to experience joint pain, mainly in my knees. Doctors would tell me it was growing pains and send me home. As I continued to grow, the pain just moved to other joints and intensified. I saw multiple orthopedic doctors, who all just told me to do physical therapy but that my tests did not show anything wrong. Eventually I was recommended to see a rheumatologist, who was finally able to diagnose me.  After years of normal x-rays, MRI’s, and blood results, I was diagnosed with Hypermobile Ehlers Danlers Syndrome. I have a genetic condition that affects all my organ systems, but mainly my musculoskeletal system. People with EDS are called zebras because our symptoms typically cannot be seen my others and everyone’s symptoms are different. The diagnosis brought me relief because it felt great to finally understand why I was in pain, but my condition is chronic. All I can do it take anti-inflammatories to help relieve the pain. Around the time of my diagnosis, I made the decision to quit dance for 6 months to relieve my joints. Without dance, I felt like the number of hours in a day had increased. Getting back into dance was a little difficult but I just had to work hard. When I went back to dance, I was asked to join Company, which is by invite only. This was a goal of mine since I was little and accomplishing it felt great. But I was still in pain while dancing. It eventually became something I had to get used to. Recently, I was able to get accommodations for my condition. 

           Family is super important to me because they support me no matter what. I am very fortunate to be able to see my family often because most of them all live in South Florida. We see each other often for family BBQ or birthdays. For the holidays we alternate whose house it will be at. During the pandemic, when I was going through a tough time, my cousins and I would call each other almost every day. These calls made me feel less lonely during a time where I felt alone. Because I changed to Florida Virtual School in 8th grade, I had no friends in school. And the friends I had from Montessori, did not really talk to me as much. My family supported and motivated me, and I hope I did the same to them. 

        Now in my not first real year of high school, but first year in a public school, I continue to grow. Adjusting to a graduating class of almost 500 was difficult because I was used to small classes. My biggest issue was making friends. I knew no one and everyone already had their friend groups. I did join clubs, and even became an officer in some of them.  Through these clubs I was able to make friends and feel like I fit in more. Adjusting was hard, but in the end it was worth it. I feel in a much better place mentally and physically now than I was two months ago.

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