I’m writing one-armed for fear of awakening the devil in my shoulder blade. Seriously, this devil wields my shoulder like a knife.
If I could harness this power, I’m sure I could have been a fantastic performer for Cirque du Soleil. But real life has other plans, it seems. Ehlers Danlos is not an appealing illness, unless you like pain. And not the fun kind.
It’s been a trying week. I’m sure that the cortisol produced by extra stress has a part to play in how cruddy my joints feel, and this week there has been a lot of that in the mix. I’ve counted a couple major dislocations and around twenty five minor, on the right shoulder, since Tuesday. Bra straps are killer.
This week the theme for the Oslo Writer’s League Anthology 2016 was announced. It’s an incredibly fitting theme for me right now: the journey of metamorphosis.
Our minds, our identities are always in a state of metamorphosis, as we find out who we really are inside. Our bodies we tend to assume only have two real states of metamorphosis: the pubescent transition from child to adult, and the process of ‘becoming old’. That whole life span in between is seen almost as a static state of ‘adult’, when, for the body, it is anything but.
I have always been aware of my mental state changing, but the real shock to the body system came in 2009 when my Ehlers Danlos syndrome ‘advanced’, and left me feeling like Sophie from Howl’s Moving Castle, an old ninety-year-old woman in a twenty-two year old’s body. I imagine that others who have had health issues thrust upon them early in life have felt similarly, have felt the change of body like the change of seasons.
And now the time for transition is upon me again.
I will be having surgery soon, to reduce breast tissue and decrease the pressure put on my shoulders and ribs. I’m getting tired of being unable to even run up a flight of stairs without my bra pulling my shoulder joint out, or my rib pinging apart. I have scars around my torso even from the most expensive and well-fitted, soft bras. It’s almost like God knew I was going to be born with EDS and decided to double the difficulty level.
The difficulty setting is more so unwelcome considering my identity lies somewhat between genders. I’ve never felt a strong association with having a body that’s easily gender-definable. It feels like never owning any pairs of shoes that fit, so you’re always uncomfortable and getting blisters.
So the imminent changes are exciting. I’m not naïve about what these changes entail: I’m aware that the entire process of metamorphosis is itself a journey, not an endpoint. Changing one thing doesn’t mean you’re ‘finished’ as a person. I don’t really think people have a Final Form (contrary to the meme). All we have are things that change and concepts that we align ourselves closer to, like satellites around planets, when those concepts make sense for our current situation.
My current situation is going to change. I am going to find relief, when my ribs don’t pop out with every step, and I am going to feel more comfortable in my skin. It’s not going to cure everything, but it will be an important lesson.