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. Fingers and toes I can “pull out” and ankles that are too easily rolled. Uncanny pain from a body gone too far. I never knew this wasn’t normal. The subjectivity of one’s personal experience is so sneaky. It seems I’m always falling, breaking things, a clumsiness that surprises me and makes me lose trust in my own solidity, as in Where did I go? I swore I was maneuvering correctly, aiming, being careful not to knock over any subjects or objects. What was I just then?
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?
My stomach, eyes, veins, skin, and heart also slip away from themselves. My stomach has long been plagued with maddening symptoms, all manner of extreme pulling, pushing, bloating, leaving, and staying, with test after test coming back negative. One specialist, his sense of self secretly subluxing because he couldn’t find a diagnosis, wrote me a referral to a psychiatrist. My eyeballs, for their part, stretched and stretched starting when I was about eight and kept stretching into severely elongated myopic eyeballs. By the time I was twenty-six, I had stretchmarks on my retinas and a hole that needed to be burned shut with a laser.
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. My heart, so driven by my veins, pumps too slowly, then too quickly, and always with too little pressure. The confused pumping of my blood and heart leave me dizzy and passing out without warning, nauseous, intolerant of hot and cold, with the overall effect of demanding that I rest when I do not have time to rest, and causing gradual wariness around movements I associate with living—dancing, running, biking. It creates, too, what many doctors call “brain fog” but what, for me, is more accurately called “depersonalization”: A tenuously boundaried and ill-defined body, from the deepest insides out, from the very middle in those little parcels called cells, resulting is a dissociative and subluxed sense of nonexistence.
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. While at the physical therapist for a rotator cuff injury which had no apparent cause, 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. A geneticist soon confirmed that I was indeed born with EDS and, because of the strange nature of the disorder and ignorance in the medical community around its myriad manifestations, it goes undiagnosed in countless people.
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. That’s what doctors keep saying, loose joints. Loose hinges from which to swing alleged pieces of myself. Have the pieces ever truly known each other? Can they see a silhouette or whisper of their wholeness? My body is constantly gliding, widening and rolling away from itself, waving back at the gaps it has left behind. The physical therapist literally attaches me to myself with medical tape, pulling my muscles and skin up tight. She gives me special instructions on how to use braces and splints so I don’t glide too far into potential infinity, how to don compression garments so reality and I can lean against a shared layer.
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. 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. That there were ways in which the symptoms could pile on and exacerbate, which already seemed to be happening. That 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, and I wasn’t expecting the optometrist to uncover a swollen piece of eye. I wasn’t expecting to wake up in the middle of the night convinced I was being stabbed from the inside out, my body attempting an explosion. I wasn’t expecting to keep getting dizzy, to pass out and have to go to the hospital, or to sprain and lock my fingers while sleeping and to ask myself in horror what the future would be like if I couldn’t write.
Years ago, I experienced what could only be called ego death while standing alone at the edge of the Grand Canyon. My body became none other than that rocky edge itself and all the empty air it led to. I became overwhelmed with a sense of wanting to throw myself into the canyon, because I saw only one massive thing that was changing every instant, from all angles and dimensions, from the inside out, right from its genes. I understood in my bones, skin, stomach, veins, and eyes that in the most ultimate sense nothing died because nothing was born. My entire self subluxed at the horror of this opposite-prison. I panicked and walked quickly back to the trail.
I’ve always struggled with this unnerving sense, sometimes lasting only a moment but often lasting months or longer, of not knowing who or what I am or what is real, losing myself, being frightened by a seamless blend into other beings or objects, snapping backwards in a panic. It’s always been like a riddle, a koan: What does it mean to exist? It feels like needing the conditioned shelter of containers, lines, physical objects, and mind objects to hold a definition of myself, however lightly or wrongly. I crave the shelter of my body. I don’t want it to be so fluid. Its lawlessness pains me.
I jot down questions in a notebook whose answers I don’t have yet:
What does it mean to sublux if the body and self are different?
What does it mean to sublux if the body and self are the same?
What does it mean to dislocate if the body and self are different?
What does it mean to dislocate if the body and self are the same?
What is space?
What is a body?
What is a limit? (A beautiful limit? A scary limit?)
What is glue?
What is the limit of myself? How do I get there?
How do I get back to the middle of myself?
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? What manner of being will you enlist now that you know consciously what you’ve always known subconsciously—that you take countless wrong turns in your attempts to connect? Will you now attempt to connect back to yourself in manner of a quiet bird constructing a nest, or a loud bird constructing a kill? In the manner of a stocky child tumbling to the ground, or a grotesque beast in a field? In the manner of a field being overtaken with all the things that grew in it, or a field once verdant and now turned soil? In the manner of a blossom, or a tree trunk fallen, or a tree trunk upright? And, for god’s sake, in which direction do you connect yourself back to yourself? With which prepositions do you possibly excuse, justify, and integrate a connective tissue disorder? Connect in yourself, to yourself, over yourself? Through, at, within, against? Are you the spaces, too? Are you the guiding energy? How will you pull your skin, bones, veins, eyes back together when they go too far? Will you be able to? If not, how will you decide to write about it? With which adverbs: simply, happily, frightfully?
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. Do you toss up your lax hands and say, my disconnection from myself is not a cliché, an innocent thing to be murmured on a hard day, don’t you see? It’s not a juncture or an enjambment within avant-garde poetry or a postmodern complication of identity. It is not a hybrid experimental novel and it’s not a metaphor for Marxist alienation. Do you simply announce from atop a crumbling mountain of self, I just can’t connect. I’m sorry, I’ve tried. My actual self is blurry, confused. My disconnection to myself is literally who I am, it is the literal physical space in which I live, and this can’t change.
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. From disconnected tissues I try to sew something together, to magically see a steadiness, to manifest and embody a hard container, to determinedly attempt to push my hand through myself just to prove I can’t, to connect the stuff of self to itself so I can be whole and sure. I don’t want to have any more moments of not knowing where my body went or why, or where it will go without me, or the pain, confusion, and exhaustion I will feel. I want to inhabit the illusion of a permanent, enduring, secure reality. 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.
