Ehlers-Detective Syndrome

I have a disease. It’s called Ehlers-Detective Syndrome. It’s a secondary diagnosis to Ehlers-Danlos Syndrome. I made it up.

I am always looking in mirrors, not just because I am exceedingly vain. I have to, to see where my joints are going. I lack the ability to properly perceive where they are. Proprioception. Can’t do it.

One could describe Ehlers-Detective Syndrome as a form of mindfulness.

I pay attention to everything that I am feeling physically, too.

If something starts hurting in a new way, I spend time considering WTF did I do differently that my flimsy body couldn’t cope with. Did I carry something awkwardly? Different shoes? Fall asleep on the couch and my head tumbled over? A new exercise or stretch that strained me? Eventually I’ll figure it out. One false move can get me. I am very severely affected. Although this happens less and less as me and my collagen have gotten stronger.

Ehlers-Detective Syndrome is a definitely a version of meditative contemplation. A lifetime of inner seeking and observing. What can I do to make my body hurt less. Spiritual practice with a clear purpose, while so many people lack meaning in their lives. Lucky me.

EDS may even be an involuntary path to enlightenment. I spent so much of my life alone, in agony, hardly able to get out of bed. Just like an austere monk living a solitary life of privation and silent meditation in order to find God, only I didn't want to. Throughout humankind, all over the world, people have chosen to do that to do that with their able-bodied lives. Great idea and Im sure it totally works!

I’m so enlightened now, that if someone suggests mindfulness meditation as a way to manage my pain or feelings, it’s hard not to punch them out.

Desperately seeking not to lose my mind as a river of years of my life went by and I could do nothing, well, no one is more zen than I. Trying to figure out if I’m healing, or at least how not to make myself worse are tasks worthy of religious devotion. But not ones I would ever choose.

I live in Los Angeles, the seat of bullshit spirituality. In my odd way, I fit right in.

Hot August night in Beverly Hills.

Hot August night in Beverly Hills.

 

Madora Pennington