Persevering Through EDS
I have been a dancer since before I could walk, dance has always been my hope, through the scariest of times in my life. I have been dancing since I was 2 years old, but I found my true passion for dance when I joined drill team my freshman year of high school. I was always marked as the clumsy one due to the fact that every possible “freak accident” happened to me, mostly in dance class.
I broke my first bone at 10 years old in ballet class. I landed an arguably very simple step wrong and collapsed, causing me to break my ankle. I recovered quickly, but it felt like every time I recovered from one injury I fell into the next. By the time I was 12, I had also severely injured my knee, fractured my elbow, and then broke the other ankle. After having 4 severe injuries in 2 years my doctors began to take a closer look because it started to pass the point of clumsy. When the first doctor realized something was off, he had me sit on the edge of the exam table, he grabbed my lower leg, and using almost no force at all, he pulled my entire lower leg out of the socket. This alarming discovery was followed by a lot more testing and resulted in my first diagnosis of Ehlers-Danlos Syndrome.
Ehlers-Danlos Syndrome is a very complex syndrome that targets a person’s connective tissue. Unfortunately, the connective tissue is absolutely everywhere in your body so almost every system in my body has been attacked by EDS. Upon diagnosis, I was urged by all doctors to quit dancing to save my body’s longevity. However, as I mentioned dance has always been my hope, so I made the decision that I was okay if my body lost strength quicker if it meant I got to dance as long as possible.
Making the decision to continue dancing at a high level did destroy my body significantly quicker, but it is not a decision I regret. I had the privilege of serving as Lieutenant, 1st Lieutenant, and Captain of my high school drill team. After high school, I joined the 80 th line of the Kilgore College Rangerettes. And in true EDS fashion, I made the Swingster performing group that exists within Rangerettes but snapped my ankle completely in half right in the middle of the audition.
Fast forward a little and EDS caused my life to drastically change 2 weeks after turning 20 years old. I woke up one morning, right before my final semester of Rangerettes to discover I no longer had function in my legs. After some intense therapies and one emergency knee surgery, I was able to perform for the final time as a Rangerette. Right around this time is when my friends started to point out I wasn’t hearing as well as I used to. This is when I got tested and found out EDS had begun to take away my hearing, causing the need to wear hearing aids now. EDS now currently affects my hearing, it caused me to develop a stomach condition making it difficult to eat, it causes all of my bones to dislocate easily, and often fracture, my count is now 28 broken bones in the last 13 years.
After Rangerettes I assumed all association with dance had to be cut because I could no longer walk much less dance in any capacity. I made it one whole semester before breaking down and realizing how unhappy I was pretending I didn’t need dance anymore. That is when I reached out to my high school drill team directors asking if there was any way I could shadow them or help out with the team in any way. They then offered me a position as assistant director with the team. A lot of things in my life give me hope, I have a supportive family, coworkers that feel like family, and sweet students I get to work with every day. But dance continues to be my ultimate form of hope. I absolutely love still getting to be a part of the organization that made me into the woman I am today.
I have often been asked how I stay so happy despite the less-than-ideal circumstances I have been given and my honest answer is truly doing what makes you happy. I cannot complain when the only bad part about my life is a malfunctioning body, I really am blessed in every other area. So, all I know is to find the things that make you happy and pursue them to the fullest, there is hope and happiness in the smallest of victories!
