Disclaimer: Individuals undertake their chosen activities at their own risk.
My name is Jack Orman, I am 24 years old and currently living in Colorado. I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) in December of 2016 at the age of 19. I wanted to share my story because there is a lot of fear surrounding exercise with EDS, and many times upon being diagnosed there is a sense of loss from the things we are told we cannot do.
In my case, I was a competitive swimmer for twelve years growing up, specializing in butterfly. At around age 12 I first picked up a skateboard and I immediately fell in love. Skateboarding allowed me to explore a sense of creative freedom I hadn’t been able to experience while playing team sports. It would become a teacher to me in many ways and instilled a sense of perseverance that has assisted me in so many aspects of life. Honestly, I don’t know if I would be here today if I didn’t have skateboarding to turn to!
All that being said, had I been diagnosed prior to my decision to start skating or swimming, I probably would have chosen to avoid the sports out of fear of injury. Don’t get me wrong, I suffered fourteen breaks and numerous other injuries throughout the past twelve years. Since my diagnosis, I have had mixed responses from doctors and physical therapists when I tell them I skate. Many have been adamant that I was doing myself harm and needed to quit, while others were more permissive but with restrictions. Throughout all of my doctor visits and conversations with loved ones, I always heavily advocated for my continuation of skating because it made my quality of life so much better, despite the injuries I endured. Looking back, it was absolutely worth it and I wouldn’t change anything. I never would have guessed that a small piece of wood with wheels could bring me as much joy as it has, but I have yet to find something that makes me happier.
Fast forward to the present day, I still skate on a regular basis with some minor modifications. As we all know, a big part of life with EDS involves modifying activities to make them more accessible and sustainable for us. Since becoming aware of my EDS, I no longer do some of the things I used to do, and that’s ok. I look at it like this; we have the same destinations available to us, it’s just that the path to getting there for a zebra is often filled with unexpected obstacles and turns. That doesn’t mean we can’t overcome those and still achieve great things in life. Don’t let fear of pain or injury deter you from trying new things in life, because after all we never know when our time will run out.
I wanted to quickly comment on my lack of protective equipment. At this point, I no longer wear gear because I have found I injure myself more frequently with padding. I definitely did start out with pads and a helmet and I would recommend anyone considering skateboarding to do the same and obviously communicate with your doctors before doing so.
In sharing my story, I am not necessarily pushing other zebras to go out and pick up a skateboard, considering many of us simply cannot risk it due to varying levels of instability. Rather, I want to show that we are capable of conquering injuries and we can still partake in many of the things we thought we couldn’t or shouldn’t. Life with EDS is all about risk and reward. For me, I take the risk to skateboard because I find the reward to be so valuable. Much of living with EDS is a constant evaluation and re-evaluation of risks and rewards. I implore you to find the thing that makes those risks worth it, whether it be skateboarding or something else you’re passionate about.