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by Kaitlin W.
Growing up, I was told there was nothing I could not do if I put my mind to it. Through the positive reinforcement of my family, I was exposed to some wonderful programs in my community such as my high school marching band. Experiences in this program led me to discover things about myself no one could have ever anticipated. For my freshman and sophomore years of high school, I was a member of my high school color guard. I had never been in such a physically taxing activity before, but I felt that I could achieve if I simply worked at it. I had attempted to play sports and do cheerleading as a child but always was prone to injury. During high school, I learned to dance and move and be graceful. I would perform in large stadiums and crowded gymnasiums for hundreds of people without fear. I felt beautiful and strong, and I felt I had found a group of people I could feel accepted by. After two years, the extensive practice, dance exercise, and repetitive motion of spinning and tossing the equipment began to take its toll on my body.
After enduring a series of medical visits and physical therapy, I was diagnosed with Ehlers-Danlos syndrome and Postural Orthostatic Tachycardia Syndrome. I had a syncope episode in a waiting room at the hospital while waiting to be seen. An anesthesiologist who was familiar with EDS caught wind of the incident and asked my mother in the hallway about my symptoms. I have always been hyper flexible and the injuries I received from sports and band were almost always joint related, specifically the shoulders, knees, and hips. She recommended we get in contact with a genetic specialist, who later confirmed her suspicions and diagnosed me with the classical Ehlers Danlos and POTS.
This diagnosis has forced me to make many changes to all aspects of my life. It led to my having to leave the color guard and prevents me from participating in any contact sports. It was the first time I had been faced with a challenge I could not transcend with my determination and had to give up something I cared about completely. I realized there were going to be some situations in life that I cannot simply overcome. The only thing I could do is accept this and move on.
So, while many students turn to sports or other physical activities to express themselves and stay involved in their school and community, I found other alternatives. I took my energy and passion and turned it into art. When I was young, my step-father gave me some advice about art that has stuck with me for years now: “If you draw with a pen, where you must work with your mistakes rather than erase them, you will become a better artist.” I now take this to heart and apply it to my daily life because I cannot erase my genetic flaws. All I can do is accept them for what they are, learn from them, and move on with my life with my head held high and faith in my own actions. I have now held several art shows within my local community and am working to build a career for myself. I was accepted to University where I am now completing two degrees in Fine Arts and English Literature. In 2016, I got the opportunity to live out one of my dreams by studying abroad and living for six months in Newcastle, England studying Literature. I plan to pursue a Masters of Arts and Teaching Degree to become an educator for middle and high school students.
During my time at college, I have participated in leadership roles in many organizations and have served hundreds of hours of volunteer work in my local community. In 2014, 2015, and 2017, I served with the United Way and Break a Difference program, providing disaster relief to communities in New Jersey that were devastated by Hurricane Sandy in 2013. I have worked with individuals with intellectual and developmental disabilities to provide them with one to one friendships and offer them support in their daily lives to help them become involved in their community and live independently. I want to touch other people’s lives and show them that they can overcome anything and enjoy life to the fullest, just as I have.
I am still beautiful and strong and graceful, but rather than conveying this with my body, I now show my true colors through my writing, artwork, and altruism. It’s all a matter of knowing my limitations and strengths, and not allowing flaws to get the better of me.
This diagnosis has not served as a means for my defeat, but rather provided me with the strength and wisdom to continue down this path life has created for me and to see just how far I can make it in this world.
Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
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