“Testing for Zebras” And when he asked me; “Why would you want to know?” “It’s not like there’s a cure anyways, So why don’t we just work on Treating the symptoms?” My head tilts to the side, my brain falls out of it skull cage Landing with a solid thunk on the florescent-lit linoleum tiles I am sure I resemble my brother’s dog, her face tips from one side to the next Like the proverbial dumb blonde joke, “I dunno” As she tries to decipher the meanings of our vocal expressions Confusion furrowing deeply ploughed lines of sewn concern Between the exhaustively plucked brows I just worked really hard on before this appointment… But you hardly notice my carefully made-up sunburst amber window shades Hiding violet luggage under eye… Upper lip painted, another illusion, Geisha-delicate and false Earrings dangling free and loose from lobes which barely exist My teeth shined white by products, By-products of spitting blood from recessed gums into porcelain brights A smile produced and forced with metal into submission long ago To hide the over-crowded high and narrow palate The effort to look ‘good’, under a thousand layers Trapping what little core heat my body has to give To live within this funky facade, this colorful arcade Of tiny bits of distractions, all meant to hide the heartbroken actions, Reactions to your slowly freezing attitude, Because while you sit there, reading my medical charts My heart is pounding in my chest A Galloping herd of the wildest horses to ever roam the Buffalo plains…. My Breath is caught in a chest gasping for air Gasping for Life, as I struggle to fight for it…. Struggle for the breath to tell you I am out of it….. I am flushed with the panic of a thousand adrenaline nightmares A victim of my own body, my own system…. The System is down, the system is down! Quick someone, call a doctor…. Except, I’m sitting right here, in front of you, and you’re not seeing me You’re seeing words on a screen, and the the numbers which will line your Hippocratic pockets with hypocrisy You’re seeing the fancy cars, and swaggy bars With which you’ll get to schmooze Your next drug cartel agent dressed in tie and suit Carrying briefcases full of Treatment Options selling cures Like Sunday Comic trenchcoat watch dealers Hurry and get the best prices for these ‘miracles’ That are always just a little too hard to swallow Oh, I’m sorry I didn’t follow, the directions as prescribed Because I was only trying to treat the symptoms….. And now that I’m curious, now that I want to know What the Nature of which virus is slowing spreading within My fragile and easily bruised skin, scarred and marked Easily torn by your intolerable indifference, my heart bleeds But because you can’t see the blood leaking I am dismissed, I am cast aside, I am set into the category of Crazy. I am Woman, I am Hysterical…. I am hypochondriac, dreaming up a thousand illnesses to cope With a reality I apparently can’t come to terms with And simply need to swallow the Chill Pill, Man…. But I’ve tried to tell you, swallowing doesnt always work for me You see, when you have a ribbed esophagus, items get lodged Stuck, trapped, held from going where it’s supposed to be Digested in the acid of my fearful stomach, retching with the hope That one more swallow of water is going to push this down, That one more breath is going to slow the thunderous hooves pawing my jugular That one more appointment is going to bring me One step closer to knowing the Root cause of this systemic failure….. Flushed with indignation, my pulse thrums like a busy signal My voice Swallowed by the Silence I can not break For the blood in my ears is boiling as clamshells at a lobster bake The waves of my breath flung into the stagnant opinions of your expertise And you watched me drown, no, wait, you didn’t….. you watch the screen, All because I hadn’t had “anything bad enough happen to me yet” I wanted to thrust my hands into my chest and tear out my spleen And rupture your wasteful ideals on the shards of my broken ribs I wanted to offer you my heart, and ask you why it bled, why it beat, why it pounded me each day into submission like your smug arrogance, twisting like a polite smile But it looked more like the grimace of Death, skeletal, bony, without substance Without Life…. a desert of Treatment Options in little brown and blue bottles… You offered me nothing…. And still I bled for you, my tears a blood trail of emotion Followed better by the dogs in my life, than the docs in my life…… You ask me why I would want to know You ask me what my goal is in getting a diagnosis, this diagnosis And try to scare me away with playing a numbers game Reminding me tests cost money, money you would possibly earn But, isn’t it possible, that my wallet is as flexible as my joints? Excuse me, but I think your ignorance is showing, doc…. And now I am aware, of who is the bigger asshole It has more to do with your “knowitall, can-do super doc” attitude Than the frustrated swearing from the girl in the chair…. My galloping heart, my jungle veins twisting like lacey blue rivers Beneath fishbelly white velvety soft flesh The striations running like melted wax rivulets Against holy watered acid burned vampire pale skin The scars, my stripes, Tiger stripes I fought to earn Bringing Life from the Void of Hysteria, pushing with forces strong enough to turn coal into a spine of pearls And curling tendrils of bright red and blonde hair, and button noses to snuggle….. My heart gallops like a wild herd outside my body Heard like two distinct echoes keeping tempo with the beating Keeping time with the fleeting moments I fear are more limited each passing day…. You, doc, scan the surface of the tree line, and decide to stand off-shore You decide to slam yet another door, in my face…. Because whoever heard of Zebras running wild in America? It’s just not possible, the statistics are not in my favor You’ve heard of a horse of a different color, But you didn’t stop to taste the flavor of this diagnosis on your tongue And wept from the joy of discovering I am not alone No, doc, you don’t understand what it’s like to look at all the horses and not help wondering which Zebra covered her stripes to fit in Because if it walks like one, and talks like one, being called a Horse is close enough for treatment purposes And like they say, Almost only counts in horse shoes and hand grenades…. I just didn’t realize my health was a game, played by quick-witted swindlers Pulling the pin and tossing in, your uninformed opinion Effectively ignoring my requests, A simple set of genetic tests Adding more fuel to the medical record fire box of insanity Your notes damaging my reputation as well as my psyche While I sit in the chair and tremble in your judgemental eyes… “But you don’t look sick” Well, excuse me, dickhead, for not wearing my pain like an accessory I’d prefer to try to have some sense of normalcy I try to function through all my dysfunctioning I am trying to run free, knowing who I am Because, sometimes, even Zebras happen…..” 1/10/2015 Jennifer-Renee Leonard “Ehler’s-Danlos Syndrome is a set of connective tissue disorders which can affect your entire body. It is thought to be rare, though possibly not as rare as we were given to understand. The folks who fight for more awareness refer to themselves as Zebras for very good reason. Many have been misdiagnosed, others completely dismissed as mental illness. Doctors are taught to “Think horses, not zebras,” when making diagnostic assessments of patients who come in with a bunch of seemingly disconnected symptoms, and will readily and easily set aside all thought of anything beyond their neat little check-boxes. It’s hard enough dealing with the pain associated with having extremely lax collagen in all parts of one’s body, nevermind dealing with the Stigmas associated with chronic pain, mental illness, and disability in general, but to also have the medical professionals in our lives constantly shoving us aside, or being downright rude or accusatory when we try to advocate for ourselves, and look for answers beyond what they’ve decided to give us…. I know it’s not just Zebras out there suffering, there’s a whole lot of angry and disappointed folks out there trying to make sense of the medical field, and feel like we’ve been duped…. This poem is true to life, my own experiences with doctors, but also seems to be true of many others out there as well, and seeks to put a Voice to those horrifying moments alone in the doctor’s office when shit is hitting the fan and you find it spraying directly into your face…..Thank you for reading.”
Posted on: Wed, 21 Jan 2015 21:33:39 +0000
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