Alphabet Soup
Eight days after my twentieth birthday, I'm rushed to the Emergency Room. Again. Twelve times in the last year and a half. The pain is so bad I can't pick myself up from the tiled bathroom floor, sweating, nauseous and sick to my stomach. “We're sorry, Ms. Ludemann, but we can't give you any painkillers -- have you tried ibuprofen?” I see a news segment about a man who took so much Advil that he burned a hole in his liver, and wonder if burning a hole in mine would convince people that I'm sick. I cycle between passing out and dissociating on my partner's worn couch. The EMTs who arrive in the ambulance joke that I can't be that bad. The (white, old, male) doctor asks me if I have any “mental health issues,” then tells me I am a woman and I simply have anxiety, manifesting itself in physical forms. IVs, EEGs, EKGs, MRIs, CAT scans. I am drowning in alphabet soup, but no one has an explanation for the ache in my bones, the snapping sounds my hips make, the popping of my subluxed shoulders slipping back into place. In November, I drive to a nearby medical supply store. The last few hundred dollars in my bank account are forked over for the only semblance of freedom I have had in weeks. The seat is too wide for my hips. The plastic armrests leave black and blue bruises on my arms for a month. My friends pick up a roll of cat printed duct tape at CVS, and we spend the evening carefully aligning strips on the side rails. It becomes my “pussywagon,” a humorous extension of myself in an attempt to conceal the bruises all over, the muscle spasms that rack my body, the tears shed as I struggle to literally crawl up the stairs to my inaccessible, second-floor dorm room. I soon learn that my college is built on hills, and try to ignore the pain in my shoulders as I push myself across campus and back. In December, I set up a GoFundMe, staring blankly at my computer screen at the hundreds of other fundraising campaigns set up by people like me who need money to cover the cost of surviving, which is its own pre-existing condition. We raise $400, and I have a break down in bed thinking about ways to make up the extra two thousand we need. My grandmother, whose own joint issues lead to a botched knee surgery and a large legal settlement, loans me the money, if only because we call each other and commiserate over the weather and the pain in our elderly bones. The chair I choose is bubblegum pink, bright enough that I can be spotted crossing the dark streets on campus at night. I name her Veronica and cover the sides in stickers and figure out hacks for attaching my backpack to her pushbar. They move me to a new dorm, where I don't have to humiliate myself crawling to my room. I spend January through April zooming across campus, waiting impatiently for the crowded elevator in academic buildings, calling facility services multiple times imploring them to shovel the wheelchair ramp and make pathways bigger than a foot wide. My partner and I trudge through the mud and muck of Pride in May, dodging puddles and shivering under sweaty plastic ponchos. When we roll over to compliment a group of fellow queer wheelchair users on their sign, which calls out the inaccessibility of having the parade terminate at the fairgrounds, they smile and ask, “Do you have Ehlers-Danlos too?” For the next hour, I learn that other people have the same pain I do, that the “party trick” I've had for years is really my elbow dislocating, that the dizzy spells and night sweats I get have a name, that my symptoms are real. I bury my head in my laptop for a weekend straight, digging up any and all information I can find. My parents tell me that researching too much is making me a hypochondriac. Two days before my senior year, my mother, Veronica and I fold ourselves into my small car and make the drive from our house to the only doctor within a fifty mile radius knowledgeable about Ehlers-Danlos syndrome. Two white-coat wearing, tight-lipped doctors poke and prod at my body for an hour, making me bend this way and that way, asking my mother questions about my birth, looking at my teeth, taking samples of my blood. They tell me that I don't score high enough on the Beighton scale to have Ehlers-Danlos, but I might have Hypermobility Spectrum Disorder, the big umbrella under which EDS falls. I nod and smile blankly, knowing that the entire ride home I will have to listen to my mother prattle on about how she was right, that I was convincing myself I was sicker than I am. Two days before the start of my senior year, I sit in my living room, surrounded by suitcases and boxes. My sister fills her backpack with binders and books; I fill mine with meds, my foldable cane, KT tape to hold my joints in place, a heating pad, bottles of melatonin to force my body to sleep on nights when the pain keeps me awake. On move in-day, I sit in my dorm room and take a deep breath, processing my new suroundings. Then the typing begins.