My Body’s Bad Glue – by Carolyn Zaikowski

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

In this essay, Ms. Zaikowski describes how the “bad glue” of EDS allows us to slip and slide not just in our bodies but through our lives. She connects this physical malady to our emotional and even the existential realms – a very different viewpoint.

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.”

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, the nouns surrounding the action.

What is the body that moves so strangely? Where do I start and where do I go? What is this container made of if it so easily slips away from its own definition, the false definition of my solid body?

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.

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. I’d been desperate to find out What Was Wrong with the purpose of finally fixing it. I wasn’t expecting to find out What Was Wrong only to be told it would stay wrong, the ingredients of the bad glue could not be altered

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

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?

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

I’m trying to create containers of and for things from the inside out, of necessity, by default. I try to create my own body and mind from nothing. 

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