Why I work for awareness

Posted December 4, 2018

by Sabra T.

They say I’m one of the lucky ones. I was diagnosed with hypermobile EDS when I was 12. People say I’m lucky because I was diagnosed young. I owe this all to my mother.

She never accepted when doctors said my dislocations were ‘normal’ for children. Without complaints or hesitation, she drove throughout Maryland to see whatever doctor and specialist I needed. She stopped working for 5 years and dedicated that time to my needs. I am forever grateful for her love, support, and research (especially during a time when a home computer and internet access were limited). She taught me at a very young age to never give up, to be an advocate for myself and my rights, and to never settle for less.

It’s hard having an ‘invisible’ disability. But I advocate in my community not just for my invisible disability, but all disabilities. At my job, I am a member of the Council of Employees with Disabilities. We ensure those with disabilities have the same equal rights and opportunities as other employees. I have talked directly to the director of our division about some recommendations I have to make our workplace more accommodating for those with disabilities.

I do whatever I can to make Ehlers-Danlos a “household” name in my workplace. My symptoms are worsening every day. I can feel it. I know I won’t have a long career at my job. But I will continue to spread awareness of EDS, continue making our condition visible, until my final breath.

I am not just “all work and no play”. I also took on another big challenge this year and became a certified dance fitness instructor. I give a lot of the credit to my mother. She introduced me to WERQ (pronounced work) dance fitness in November 2016. We went to a free class one Saturday morning. I stood in the back that day, as far back as one could be in the room. I didn’t know how my EDS would respond to all this moving. The class was one hour, and surely I couldn’t dance that entire time. But, I surprised myself.

I found the dance moves were very doable. I was able to modify the moves to make them work for me. I continued coming to this free weekly class and gradually moved up to the front row. One of the main instructors pointed me out and mentioned how much they enjoyed the modification of my dance moves. She even asked me to teach HER my moves! Considering she was doing this format for 4 years, I was truly honored. So after doing this class for 6 months, I decided I wanted to get training to be a certified instructor. I wanted to prove not only to myself but to others that I could achieve this goal, despite having EDS.

I took the test in April 2017—and passed! Now I co-teach the weekly Saturday class with other instructors. I have students come up to me and say how inspired they are by me, how much fun I look like I’m having while instructing. They’re right! I love being able to do this every week. I surprise myself every time I go. I am so happy I get to do and am able to do something like this, especially with my mom. She’s one of the students, and seeing her looking back at me as I’m instructing gives me such joy!

I work (and WERQ!) for those of us that are unable to because of our condition. I work to prove that people with disabilities are just as capable as anyone else and have a needed place in the workforce. I work to ensure my mother’s hard work on my behalf during my youth was not a waste. I work for MYSELF. I work to be as independent as possible. I work to spread awareness every day.

EDS might make me bend, but it does not break me. Even with my scars from surgeries, even with my dislocations and subluxations, even with my braces on throughout the day, I am a ZEBRA and I PROUDLY dazzle both at work and on the dance floor.

 

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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