#perhaps i am not over being chronically ill and i need to mourn a little more and feel my clearly still there sad feelings

[trashworldblog]

casually talked about my disability with my professor and casually tried not to cry talking about the struggles of this semester

[fourteen--steps]

This is the poem that my url is drawn from. It’s titled Fourteen Steps, and is published in the Putney summer 2014 poetry anthology, Pinewood Houses ------------------------------------ 1. I went to swimming holes today The coveted favorites, the chosen few who escape the asphyxiation of summer heat and go Swimming Except I didn’t come back with a sweet summer memory, or gravel in my socks, or a new friend I came back with skin the color of of unripe strawberries and unwhipped cream 2. I eat two spoonfuls of straight salt every morning, and one at night And not in a poetic sense I can’t keep up with my friends walking to dinner I can’t keep up with the world walking through dawns and dusks 3. Last week it took me an hour to get to jewelry I crossed the endless stretch of campus greens, all the way to the sculpture studio Fifteen minutes, perhaps I stopped at the bottom of the stairs Fourteen steps Stopped Stood Stood Tried Stood Stopped Stood Fourteen steps were further beyond my physical abilities than a marathon to a toddler Do you know what it is to be eighteen years old And unable to climb fourteen steps Do you know what it’s like to have a dying hummingbird in your chest Do you know what it’s like for your blood to stop flowing it’s course For it to give in to gravity To reach more eagerly for the earth than your heart To hold tightly to the soles of your feet and abandon your eyes to streaking trails and the lazy dances of insects that aren’t really there Do you feel gravity Do you feel air Do you really Have you ever felt the scowling gazes of an entire train car slide down your neck when you don’t give up your seat for the man on crutches, or the elderly woman in her floral shift And you know this makes you the scum of the earth but you know even more certainly that your own legs won’t rise beneath you and the moment you begin to bolster yourself you feel the heavy fog creeping in The precarious balancing act that is your consciousness is already tipping topsy turvy and you won’t make it out even though the doors are closing Please Step Back And nothing has ever scared you as much as the idea of passing out on the grimy cobbles of the goddamned Shady Grove metro Please Step Back My doors are closing 4. My greatest disappointment in life is that my eleven medications include every color of the rainbow except purple Get it together, medical professionals 5. I should inspire Look at the poor disabled girl mastering the obstacles life has thrown her For the low low price of five dollars you can watch her here, live as she excels with flying colors and pauses occasionally to look beautifully tragic Ten months ago my most beloved hopes were for an art portfolio, a jazz solo, a high school diploma, a spot on club volleyball But this tale does not hail from the gaudy glows of storybooks or sideshows so I wander this world without a single one My words won’t come out when I speak I am sown with birthmarks I was not born with Tears swallowed me in lost salt the first time it took me far too long to remember my own name And when the tic - tic - twitching began They say the part of the brain that holds sadness is shaped like an almond Drowsy left in a corner stacked with almonds to the ceiling Left almonds in your ceiling, I hear their scratching feet Behind a heartbeat like a mild sprint The almonds beep incessantly I am leaden I am Sisyphus 6. I have a chronic illness I have Postural Orthostatic Tachycardia Syndrome I have Mast Cell Activation Disorder My cracks are invisible from the shale sheet surface My fault lines lie beneath cliff faces and bird feathers I qualify for a handicap parking space but not a second chance I’m pitiable enough for you to interrogate me incessantly about drinking more but not enough for you to slow down when you walk with me I can carry a water bottle but not your trust I am enough when it suits you all And not a moment longer 7. Sharp blips of color Like a seismograph done in water color paintbrushes Or an EKG equipped with crayons Primary pastel fingerpaints in red, yellow, blue, green Too basic to be more than a single word all splayed across a worn expanse of sandalwood They smell of freshly printed copy paper And taste of desert almond cactus fruit It bristles with vivid spikes But like a prickly pear or a porcupine It only pricks when you roll it in your palm It remembers every moment that has ever been I remember every soft mark it has uttered 8. The one exciting superpower I have developed is to know the day before it is going to rain and judge the precise hour of the downpour It’s the coolest thing that has ever existed I can eat lunch outside on a cloudy day when everyone else is huddled inside under ceiling fans and sleepy spoons Because the pressure of the atmosphere sings me its stories and I know the skies won’t open up for another half hour at least 9. My pillow is a bittersweet home I don’t write in the dream journal Brian gave us because I don’t want to remember what I see when I sleep I wake up over and over again but none of it is real I’m back in my room, but everything is subtly wrong The books stacked on the floor aren’t in any human language The blanket slung over me wore through to tatters years ago, but here it lies again good as new The woman who appears in the doorway pixelates and smears round the edges and isn’t quite my mother And the moment I realize I’m dreaming, the world gives up on all pretense and twists and twists until I scream soundlessly But I can’t wake up I always know when it’s a dream now But I can’t wake up 10. I woke up this morning to half a dozen spiders hovering in the air nearby Reach to shoo them away, my hand passes right through The little clickety clockwork creature that hopped down beside me last month wasn’t there either The handful of hair ties I dumped on the pillow to hit my alarm clock never existed The clipboard I woke up writing on flickers, fades, vanishes The line between nightmare and hallucination is finer than a window screen Be it the aberrant chemical spikes or the medications I have wiped that line away entirely It’s awfully confusing to lose your clipboard at 3 a.m. before you’ve even finished your sentence 11. I’m reasonably sure the doctors can’t possibly need this much blood for testing Fifteen vials just seems a bit excessive for one test They must be selling to vampires on the side 12. Up and down, dancing with the mercury in its skyscraper cell My own heart runs me ragged Blood pressure rising and falling in syncopated rhapsody A waterfall, a hailstorm, a desert Vying for the lost hopes of yesteryear With the slow turning of the seasons I discover a new loss each day Mourning the person I was I could have been And the harsh truth that I never will “Radical acceptance,” they preach The doctors with their too-real clipboards The teachers with their scatter scrabble plans with no backup plan for the letters that don’t quite fit their words The parents leaving me to it Acceptance feels too much like being okay with it I can’t 13. I live in half worlds Half in his, half in hers Not really in either one “I love you” crossed out in the margins The Cheshire Cat plucks an umbrella from the golden gauze as it chases away the coughing of the smoke machine and holds it up for the bow round Alice’s waist But the girl is gone, left it behind seeking the makers mark on the nearest treehouse And is gone into the night of the curtained wings And is gone into the night And is gone Gone Sometimes you can still hear soft laughter in the pines and pillows 14. Paper is the only place I can reach step fourteen