My Body’s Bad Glue

My Body’s Bad Glue | ENTROPY – written by Carolyn Zaikowski – December 26, 2016

This is a wonderful essay linking the physical “disconnectedness” of EDS to a psychic feeling of disconnection from the self.

I have Ehlers-Danlos Syndrome, which means my body has bad glue.

My glue, an amorphous, drunk blob or cloud, playing tricks, getting things all wrong, incapable of indicating what is real. My genes, speaking to my body in the wrong language, refusing to bind me, utterly stupid in regards to what level of adhesion properly constructs a body. 

My joints have been subluxing for as long as I can remember, way before I knew the word “subluxation.” Shoulders and elbows slightly off here and there. Party tricks in which I can clunk my hips in and out and make people cringe, wrists that get caught on themselves, knees that wake me up because they traveled too far beyond themselves in the night.

To sublux is a medical verb that means to partially dislocate. Now I know the word. But I still don’t understand what’s on either side of subluxing

My stomach, eyes, veins, skin, and heart also slip away from themselves.

My veins are also unsure of their own limits and how much bruising to grant or withhold, with bruises so extreme, hard, and fat that doctors do not even recognize them at first as bruises.

Thirty-three years after I was born, as I accumulated piles of unexplained symptoms and became more and more convinced that Something Bigger Was Wrong, I finally confirmed that my manner of existing did not match that of those around me.

I was informed that I had Joint Hypermobility Syndrome, a condition in which your joints, the very hinges of you, simply go too far.

Further digging uncovered a bedrock that took my breath away, left me in the horrible but strangely relieved tears of finally being witnessed: That joint hypermobility was usually accompanied by a constellation of symptoms wherein havoc can be wreaked on the skin, eyes, stomach, veins, heart, teeth, bones, and all manner of organs.

This constellation is known as Ehlers-Danlos Syndrome, or EDS, a genetic connective tissue disorder in which your body makes collagen incorrectly.

Collagen is your body’s glue, a sprawling mess of amino acids found in almost every single bodily system, some systems almost entirely made of it, and when that glue is bad, everything can go wrong.

You can become completely disconnected from yourself. All of the parts want to separate, go their own way, struggling constantly between temporary integration and continual disintegration.

My connection to myself is inherently loose in the most literal sense.

I’d always intuited, in that pre-word pool of me, that something like this was the case. When I found out about my EDS, I was slammed against the longing I’ve always had to be properly connected to myself, and I was distraught that now it seemed I never would experience that effortless connection. EDS is not curable; it lives in the cellular ingredients. You can’t medicate, meditate, yoga, supplement, or surgery it away.

people with EDS can experience some of the worst physical pain and most varied symptomatology of any health condition.

I wasn’t expecting to be told that so many things in my hips were tearing and pulling at each other that I’d have to decide what level of pain I was okay with

I negotiate, I give myself challenges, asking questions at night, daring myself to answer them: Okay, now that you know your tissues are definitely connected in a disorderly manner, what are you going to do? How will you connect yourself back to yourself this time?

Or do you give into the ache of impossible attachment to the idea of a body you can’t have and, insisting on your right to feel upset and stuck, do you stomp your loose foot and say things like: I know, I know, the self is an illusion, bodies are a construction, we all get sick and die and many of us get old, I’m not special, but the illusion of solidity is one I’d like to experience.

I’m writing this from the inside out, following the track of my genes, into the objective world from this subjective inner cauldron.

I want to be in the middle of myself. I want to know what that’s like. I am tired of the edges of my joints, my eyes, my veins, my body; yes, the edges can teach you things, make you more expansive if you’re patient and aware, but I don’t want any more of those lessons. I want the lessons and the calm of the middle space.

This essay is definitely worth a read for those of us with EDS: My Body’s Bad Glue

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One thought on “My Body’s Bad Glue

  1. BirdLoverInMichigan

    Wow. Like the author, we with EDS also negotiate. And we become experts at it the longer we live since we become less stable and physically intact as each day passes. Each step we take or each time we rise up from a chair we negotiate against gravity. This is overwhelming and extraordinarily fatiguing.

    This piece surely makes no sense to those without Ehlers Danlos Syndrome. But to us, it’s a crystal clear 3-D synopsis of life on earth for us.

    I’ve tried to explain EDS as similar to that odd feeling you get when you’re in an elevator that finally lifts off. But for us it never ends.

    Good job from someone in the know about all this looseness, pain and disconnectedness. Wish I wasn’t in the EDS club, but at least I can empathize with this writer.

    Liked by 1 person

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