The sunlight seeps soft through the womblike redness of my closed eyelids as I ease into consciousness.
Can I actually feel the crackling dislocations from my elbows to my fingertips, or is it simply familiarity, the recognition that the slabs of meat at the ends of my arms must somehow still belong to me, even if I can’t control them right now? I blink languorously, eyelids plinking together. How can I be more tired waking up than I was before I fell asleep?
I say the names of the bones to myself in a chanted catechism as I will myself to sit up. Lunate, scaphoid, triquetral. My tongue tap dances along the backs of my teeth and I wriggle against the pillow without using my hands. Capitate, pisiform, hamate. Once steady, I interlace my fingers, stabilize my left hand with my right, then pull and twist simultaneously. The movement is rote memory. Lightning bolt bright explosions implode within my hand every single goddamn time. There is a machine-gun chatter of bone against bone and I don’t realize I’m grinding my jaw and holding my breath with the hurt until I have to unclench and inhale. The sound of re-location echoes in my room — all of Oakland must be able hear it — before I switch, bracing right hand against left this time. I pull, twist, and my nerves scream in protest as the blood flows back into my hand. Each pale finger bursts into bright crimson bloom, tributaries abruptly flooded with color and the feeling that inevitably follows. There is an electric tingle like brushing wet skin against a light socket as I pop my thumbs back into place, then encircle my wrists and watch my ulna and radius forcibly realign. My elbows follow suit obediently, eventually, and I am grateful they don’t require more coaxing.
Once my hands are back together, I plant them on the sheets and twist my torso. Each vertebrae jumps back into place, an answering cacophony to the call of my hands. It feels like stacking books on a shelf until their spines are carefully aligned with the edge.
Eventually, slowly, surely, I sit up fully. I slip my fingertips beneath my scapula and crunch my ribs back in place. I roll my head in tiny circles until my neck no longer creaks. My ankles pop like bubble wrap and if there weren’t two screws in my left foot, anchoring my toes in place, they might add rifle-shot cracks to the discordant symphony of my skeleton. I swing my legs over the edge of the bed and shuffle into my slippers.
I keep the pain pills in the second drawer on the left-hand side of the bathroom sink, through the bedroom door and down the hall on the right. If they sat on my bedside table, right there beside me, within easy reach (once my hands were realigned), I might never make it off the mattress. The rattle of round pills against child-proof plastic is sweet harmony, a chorus of angels whispering against the seashell curve of my ear. They fall into the palm of my hand, sweet manna from heaven, and dissolve bitterly, beautifully beneath my tongue.
One of my earliest memories is as a toddler in the hospital, and the razorblade burn as they snaked a catheter up into me to help empty my bladder.
The pain of that urinary tract infection looks like bright, white, focused light and the weight of my Mama holding me as I screamed. The hospital is not an uncommon setting for my childhood memories, because there are so many other surgeries: a broken collarbone, stitches striped up my forehead in a scar that makes me self-conscious as a teenager, eye surgery after being declared legally blind. Scars remain in the places where my memory has evaporated like pools of rubbing alcohol. I am too young to have so many injuries, and the doctors label my mother negligent while the nurses cluck their tongues when she brings me in yet again. She is not a reckless parent; I am simply sick and undiagnosed. I will remain that way for decades.
I grow older, and the hospitals are replaced by memories of rooms full of fellow elementary school students lined up in neat rows as we stood, backs against the walls, to be tested for scoliosis. I knew that my bones were curved, sinuous and slippery, because the doctors had already told us. I welcomed the escape from the tedium of our regular classroom routine and thought little more of a test that told me nothing new. It didn’t hurt yet — not more than anything else I’d been through, anyways — so I didn’t have to worry.
I grow older still, and my middle school years are defined by the hissing suck of the refrigerator’s rubber seal as I slip the protective plastic case containing the glass vial of human growth hormone and its syringe inside the artificial chill. Sleepovers meant an inescapable conversation with someone’s mom to explain why I was bringing needles over to spend the night. Sometimes I would sneak into the bathroom to inject the drug into my stomach or my hips; sometimes my friends watched the process, rapt and only slightly disgusted. The endocrinologist asked me questions about my absent period that made me squirm. His queries made me compare myself to friends who had already begun puberty, as if the flat line of my chest and tiny stature weren’t already stark reminder of how far behind my body lagged. Eventually, I refused to see him again, missing out on adding inches to my stature as the hormonal help ended.
In high school, I arch my back against the hard metal of the chair attached to the desks, feeling the deep ache in the curve of my spine. Some days I’d skip homeroom and drive my emerald minivan across the bridge until I found an expansive parking lot where I could sleep in the backseat without being noticed. Cool breezes fluttered in from the cracked back windows but none of it made the hurt go away. When I talk to a doctor about feeling so low, I don’t mention the pain — no one has connected any of the points into a cohesive constellation yet. He points out the pin on my lapel, a round button proclaiming my love of The Cure, and asks me if I take a lot of MDMA, listening to a band like that. I laugh in his face and never come back.
In college, the shame of calling out of work yet again burns bright. I wonder if the heavy plastic trays of food I hoist onto my shoulders were the reason why my whole body sometimes protested so vehemently I couldn’t even get out of bed. I feverishly save my tips, cycling through every brand of mattress topper available, but none seem to help. I email my professors to tell them I am unable to move from my pillows, much less sit up straight behind the wheel of a car, which means there’s no way I can drive to campus for class. Sometimes I drag myself to the doctor and beg for any kind of answer. Instead, they recommend I see a chiropractor and write me a note that excuses me from class.
After college, as a bonafide adult, I revisit my childhood spent in the emergency room. One night, I check myself in after two weeks of hitching gasps on dislocated ribs. I beg the intake nurse to help me slide them back into place, long enough so I can take a deep breath. Breathing feels like sucking oxygen through a blocked straw. Instead, two nurses and a doctor corner me. They proffer pamphlets that explain the link between narcotics and addiction; they encourage me to get myself clean. I tell them I don’t want narcotics, but they’re convinced they have me figured out. On the way out, one finally touches me and exclaims in surprise when he feels my rib cage shift. I sob painfully in the car as I drive home.
The diagnoses that came first were the ones that are always applied to young humans with uteruses who complain of inexplicable pain.
My medical record fills with words like conversion disorder, and hysteria, and hypochondria. Someone as young as me shouldn’t — realistically couldn’t — possibly hurt this much. The doctors can’t see my pain, which means they can’t measure it, either; obviously it must not actually exist at all. A primary care doctor finally refers me to a neurologist so he can wash his hands clean of me, and this doctor grants me the gift of a word that seems to fit: hypermobility. He shrugs, tells me there’s nothing else he can do for me. He doesn’t realize the benediction he has offered in the form of a diagnosis.
The salt of my tears cut channels through the foundation I patted on my cheeks to cover up the deep, dark half-moons of exhaustion beneath my eyes. I frantically search for more information in my ear, scrolling with one subluxed finger through pages describing collagen disorders. I see myself reflected in the words, each sentence strung together like pearls I could drape around myself to describe the mystery of my hurt. It is like that perfect, tiny moment of ecstasy when a word you couldn’t think of for days finally pops into your head unbidden. My heartbeat rings out like a hammer against steel, my bones reinforced with the titanium resolution of an almost-answer. I am suddenly dogged enough to fight harder, brighter, bolder for that which I now know to be true about myself and about my body. I am not quite there, but I am close.
I am twenty-six years old and sitting in the bright primary colors of the pediatric ward in a hospital basement with no reception when a young geneticist with olive skin approaches. He wears a crisp white coat and I am distracted by the flickering sparkle of a tiny diamond in his earlobe as he diagnoses me, finally and conclusively, with hypermobile Ehlers-Danlos Syndrome (hEDS), a collagen disorder that can cause severe implications across the entire body and every system therein. He gives me a reason for my UTIs as a toddler, my eye surgery, the broken bones and random joint dislocations, the pituitary growth hormone deficiency, the unrelenting pain.
Along with the diagnosis comes the reality of my existence, combined with a slew of co-morbidities: dysautonomia, Complex Regional Pain Syndrome, facet joint disease, endometriosis, fibroids, dysphagia. There is a fatal flaw in my DNA and no cure for any of it; there is barely medical recognition, much less functional literature approaching a fix. The hEDS comes with an inescapable promise of more surgeries, and unavoidable complications from those surgeries, too. My jaw dislocates and stays out for 16 weeks before I am wheeled into the cool brightness of an operating room. My big toe dislocates and is eventually forced back into place with two screws. We ablate my nerves with radiofrequencies to try and deaden the sensation of pain and inject lidocaine into my muscles to try and prevent their uncontrollable spasms.
A golf-ball sized cyst encroaches onto my right ovary and a fibroid invades my fallopian tube. A surgeon removes my reproductive organs, accidentally perforating the thin and friable tissue of my damaged uterus during the procedure. Every time a surgeon operates on my body, I ask them to take pictures of the places inside me that are broken. I clutch the images of my snarled insides to my heart as if they were pages ripped from a holy book. After years of being told it was all in my head, concrete proof of my pain’s existence is precious and perfect and makes me cry.
I become someone who is hyper-aware of my existence as a human with a body in constant rebellion. My body may be myself, but it is not my own.
My diagnosis is new when a well-meaning, nondisabled friend tells me that I’m going to “think myself into a wheelchair” if I keep talking about eventually needing one, and I can’t stop imagining her face as I look my doctor in the eye and tell him I’m not leaving his office until he refers me to a specialist to be fitted for one.
I’ve been asking to see a specialist now for months, unable to visit art museums or see concerts without my hips and knees and ankles dislocating, or my eyes blurring with the grainy darkness of near-syncope. Even the stout wooden handle of my cane, adopted as near-permanent after foot surgery, cannot keep me upright. He tells me that he is concerned I will become “too reliant” on the wheelchair, but he finally stops arguing when he sees the resolute set of my jaw that day.
Six months later, I am gripping the handrims of my new wheelchair. My cheeks already hurt from the uncontrollable grin spread across my face, but I cannot stop smiling. Even in the small space of the specialist’s office, I zip from corner to corner and back again, learning to maneuver my body in its new vehicle. I gave up long distance running long ago, after finally accepting that my ankles would never stop dislocating with each slamming step on concrete or treadmill, but have craved the endorphin rush of a runner’s high ever since. The speed and sure agility of my wheelchair provide the surety of that high.
The inaccessibility of the world serves as a sobering reminder of my limitations, however. It is not moving through the world on wheels that slows me down; I am faster, spry and more lithesome perched in my seat than I have been for years on my feet. No, it is the world itself. It is the sidewalks without curb cuts, the doors without automatic openers, the bathroom stalls too small to fit my chair inside, the entrances with stairs and the ramps around back (if they exist at all). I go to the store and can’t navigate between the too-small aisles; I go to the movies and dislocate my neck in the accessible seating (after asking nondisabled people to move); I go to restaurants and stare at the wood of the bar as my friends tower on high-top tables above me.
I see the same inaccessibility reflected in the ableism of the sneering faces of people who tell me that requesting accessibility is asking for extra privileges, who illegally park in accessible spots and curse at me when I ask them to move, who laugh in my face and tell me my life isn’t worth living because I am diseased, disabled, and therefore somehow lesser, despite brokering a tentative peace with my unpredictable existence.
After the bitter, blissful pill melts beneath my tongue, my entire body is suffused with a gentle tamping down of the loud static screaming of nerves on fire and bones dislocated from the mere act of dreaming.
I step into the shower and turn away from the water, letting it run down my back until the bee sting prickling from my winged scapula dulls to a quiet roar.
I towel off, careful to dry my scarred left foot with only a featherlight patting of the towel, turning my face in the mirror to see the red scar that climbs up my jaw and into my hairline. So much of my body feels alien to me, like the swathes of skin that remain perpetually numb post-surgery, or a foot so painful that even a sheet resting on it is unbearable agony. My body, my diagnosis, means I am an intrepid adventurer exploring an undiscovered planet, with little warnings as to what local flora and fauna might hurt me — or how, but I am learning.
I wing my eyeliner out from my eyes and darken my blonde eyelashes with mascara. I outline my lips in vibrant crimson, carefully tracing the jagged contours of my upper lip and the u-shaped curve swipe of my lower. I work carefully until I am fiercely plumed in war paint and warning signs, because makeup is one of the few ways I know to seize control of my mercurial meatcage. I pull on clothes and despite the siren-song calling of my bed, begging for my return, I head out into the world prepared to fight: the pain from my body; against a world demanding my erasure for the sin of not fitting in; and for accessibility, deserved, promised, but not yet guaranteed. I slip an extra pain pill into my purse and face the world, where every act of my existence becomes an act of resistance by simple virtue of being in my meatcage.
You Have a Body features personal essays on the the ways we reconcile our physical forms with our identities. This series explores how our bodies sometimes disagree with us, how the world sometimes disagrees with our bodies, and how we attempt to accept that dissonance.