If there was one thing I never imagined when I was 16 and planning my final years of high school in order to pursue a career in law, it would be that I would be disabled while doing so. When I was diagnosed at age 21, I didn’t stop to think about how it would affect me long term outside of a medical context. And for a while, I could pretend it didn’t. At least until, the wheels fell off.
There’s a lot floating around on the Internet about the importance of self-advocacy, and I see a lot about what that can look like, but not so much about what to do when everything goes wrong. I answer: What is your biggest regret? What is a common miscommunication? What is a recent success?
(without going insane!)
The one thing in my life, which has always been constant, is dance. I've spoken on here before about my love of dance, how with each new goal achieved I was clawing back my pride in myself and my body. The question I'm asked all the time, by my family, friends, coworkers and other dancers is why, with my health the way it is, do I keep dancing?
I've been absent for a while. Honestly, this is the first time I've even been able to go near my keyboard and to attempt to write. It hurts, but in a good way. It aches the way that muscles do after physical therapy. There's that sharp pang followed by a sigh of relief after relocating a joint.
My life will forever be changed by Ehlers-Danlos Syndrome and its sister diseases. I will never be able to go back to life the way it was a year ago, and I had to mourn that life. I had to face the reality that I may never dance again, that I would have to put work on hold, and defer my university studies. I had to confront my fears that maybe this was psychosomatic, that I really just had Munchausen's and was somehow making myself sick on purpose. But I had to stop grieving, because I needed to fight for just a little longer.