When someone has a condition that affects their life, a hindrance, a handicap, whatever you want to call it, they often say, “I’m living with it” or “I’m living in spite of it.” And I suppose you could say that I am living with Ehlers-Danlos Syndrome. But more importantly, I am living because of it.
If you’ve read my About Me page, then hats off to you, you’re ahead of the curve. On that page I talk briefly about what led to my diagnosis of EDS. A spinal injury I suffered in high school sent me in a spiral of pain that will be with me the rest of my life. In the months following the accident I often asked myself, why me? Remarkably, I found my answer.
It took about a year to realize there was anything actually wrong with me. During the accident, I was thrown forward and spotters failed to catch me during a football halftime show, but after the breath-taking (literally, on the video you can hear the audience gasp) moment when I hit the ground, I jumped up and ran off the field in one piece. The initial pain appeared immediately, but it took months for the chronic effects to set in.
Sixteen months after the accident I had surgery to repair a tear in my shoulder, the first known damage we could detect. That surgeon then sent me to a team of spinal surgeons and a physiatrist, who determined ligaments in my neck tore and never healed during the accident, leaving a few of my vertebrae especially unstable. But the gravity of my situation was burned into my memory when I was told I most likely shouldn’t have survived the accident. One of the physicians told me that my body should’ve laid flaccid, and that I theoretically should’ve been left quadriplegic at best.
During my exams with the doctors we determined that I have a unique level of hypermobility (flexibility, bendiness, whatever you prefer to call it). If you’ve ever seen a contortionist featured on a medical show like Dr. Oz or The Doctors, they’re likely suffering from this same condition.
It turns out the very problem that caused all-too-often joint aches and sprains saved my life. Had I not had such flexible, pliable tissues, my spine likely wouldn’t have been able to sustain the impact and whiplash that occurred during the accident, and it probably would have broken.
Considering that Type III Ehlers-Danlos Syndrome, the condition that causes my hypermobility, has an estimated prevalence of 1 in 10,000-15,000, it is possible that I was the only student in my school who could’ve survived the accident. (I actually believe this number to be far too conservative, but that’s a story for another day).
So I am alive today to tell this story because of Ehlers-Danlos Syndrome. And I can’t help but believe that I have this condition for a reason, that I’m meant for something bigger than myself.
- ‘Rubber Man Syndrome’ turns man into real-life Gumby (thehandiestone.typepad.com)