I’m tired of all the prayers and the apologies People who care tell me I need to stop apologizing, but for once—-I am Not The One Apologizing. Not apologizing for my existence, as one of my close friends always tells me. Stop apologizing for existing. But, how can I stop when everyone seems to want to tell me that they are sorry for me? I don’t want your prayers or your ‘fake apologies’, because “the world doesn’t end, it just feels like it does.” I don’t know who I’m supposed to be when everyone keeps using their teacher pointer-finger to tell me that something is wrong with my body. My entire life, my own father asked me what was wrong with me, but not because he cared. I stopped having an answer to give people whenever they asked me this. When will people stop pointing their finger At Me? I’m not a circus attraction, I’m a human being. You’re sorry that this ‘happened’ to me? If someone else tells me this, I will fucking flee! I’m tired of the fake sympathy and the fake apologies. I’m tired of the unrealistic optimism—the unrealistic words that “maybe you will outgrow it. Sometimes if you are diagnosed when you are younger, you will outgrow it by the time you are old.” Just stop. Just fucking stop. Just stop with the stares, the prayers, and the apologies. I’ve expected the mourning of my own body, so why can’t you? Why do you feel the need to heal me? I don’t want to be healed and I didn’t ask for it. "But, does the world really end? They say it just feels like it does. But, would I actually rather be me?" Who is this version of me that everyone else sees? Who is she? Quotations in italics taken from the song, "I'd Rather Be Me', from the Mean Girls Musical.
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Forest, dark and scary. Will I lose the magic beans? Animals speak, ogres growl, and wolves disguised. Fairy tales read to me as a child, are remembered as an adult. My story begins with a black, pointed hat and scraggly broom. A witch suddenly appears, casts a spell, and causes a stroke that almost kills me. Grey matter twisted, and the enchantress short circuits my brain. Aphasia is a serpent that stings, an ordeal of shadows and contrasts. My mind is filled with jumbled shapes, nonsense words, and mixed-up colors. Demons shout sinister curses. Still cloudy, but I see the sun start to peek through. About the author:
Rochelle M. Anderson lives in Minnesota, USA. She is an attorney who had a severe stroke in 2007 and almost died. She is still disabled with difficulty walking; and because of aphasia struggles with reading and writing. Ms. Anderson has been published in four chapbooks and in an online poetry journal. Writing poetry has helped her recover; and dictation fuels her words. It started with pain between the shoulder blades, like Nyx had placed the eclipsed moon inside, forever hidden. A calcified cave – a coiled cloak of darkness enfolded the softness that remained of that body. I wore it well, this forever home. The pain dissolved into rain as the storm coaxed clouds to empty. I felt better then, filled with water, forever heavy. A delicious soft foot, I learned to contract like lightning bolts, relax like mulch. And moved faster than I had forever. My power oozed from my mouth, sleek slimy stringy mucus, no longer a cough burden. Fast comet tail highways forever. My shell expanded with calcified excitement, the night and I foolish friends, free in this shadow air, forever healthy. About the author
Samantha is based in Plymouth, UK where she is a PhD Creative Writing candidate at the University of Plymouth exploring chronic illness through poetry. Her poetry has been published in Arc, Acumen, Room, Cephalopress, The Storms Journal and Causley International. Samantha is an ex nurse who lives with complex chronic illness and neurodiversity. Once, in a moonlit forest, a female felt a foreboding fog of her future and rested her head against a felled oak tree. The lobed leaves caressed her brow, creating a crown of weaved green. As she slept, her delicate cheek absorbed the wheels of time – the wide of the good years and the narrow of the dry barren. And acorns fell one at a time through the quiet air, landing in the soft soil with expectation. When she woke, her arms caught in branches and her hair was a hat of luscious leaves. She tried to pull herself away, but the acorns edged ever closer – their shiny heads like accusatory fingers. Go, she whispered, I cannot take care of you. But the acorns didn’t answer, just waited patiently for her roots to grow. About the author
Samantha is based in Plymouth, UK where she is a PhD Creative Writing candidate at the University of Plymouth exploring chronic illness through poetry. Her poetry has been published in Arc, Acumen, Room, Cephalopress, The Storms Journal and Causley International. Samantha is an ex nurse who lives with complex chronic illness and neurodiversity. Bird
atop a flagpole soared-- Mind skewered on spinal cord. And if you’d have waited, just another six months, I know where we’d be. On that boat in Ullswater, eating gingerbread in Grasmere, if you’d have waited. Wandering through doors of Wordsworth, building daisy chains in the graveyard, that’s where we’d be. Treading the paths of Ambleside, camping in an undersized tent, if you’d have waited. Then, your house, to your bed, each other’s arms, is where we’d be. And we’d be having the sex, all you couldn’t wait for. If you’d have waited, that’s where we’d be. About the author: Holly Bars is a Leeds poet, currently studying MA Creative Writing at the University of Leeds. She has been published in The Moth, Stand, The London Magazine, Ink, Sweat & Tears, and more. Her debut collection, "Dirty", centred on surviving child sexual abuse, is published with Yaffle Press. Foreword
This poem is nothing like the one above, Dear Reader, I write for you, and me. Together we share. In light and in darkness. And the rest. I will be selfish a moment in that Western sense, Laying all out my woes to see, Bless you for reading and let us heal pains through words. A palette of pain I shall lay down, its tale is writ. As I wake today, crumpled like paper, do not try to iron me out. My creases are dark, damp, stale, something is sour too. Oh, it is me. What a shame I say to myself. Do not try to ease me with your positivity, That toxic type, but you mean well. I am guilty too. We all want to rescue. You. And you. You, and you. And me. Mild, Severe, Intermittent. What is your score, RAW I answer, One – to – ten. Oh, I will not say TEN. Fear of Judgement, no, no, no, I learnt that. I learnt my lesson fast. How may I express myself in this agony? A seven will do. Do you want pain relief. Oh yes, I do. Deformed, malleable, throbbing, sharpened blades, You loud thing. Yet I cannot localise you. You little thug n thief of JOY. I cancelled two concerts because of you and much more. OH, much, much, much, MORE. That is a poem on its own account. Wait, test results are in. Cerebral, sterile, stark. Most of all, potent! Paper, you are though in reality. The INK is simply too black. And RED. Today, tomorrow. the next. Each phrase careful, only to be more careful, each number with its specific meaning and power, power over every aspect of my day. None of it fits though - does it nurse? She has compassion at least. YOU NEED as Specialist in an area they do not exist. Oh Dear. I speak. I want to scream aloud. The DOC shows compassion my way, usually, on their good days. Which of course helps this craze settle to less of a craze. Ahhh though, here we go again. OHHHH. OHHHH. And OHHHH. This should be a song. The song of Meg with a sore leg. The song of Meg with her bad head. The song of Meg with a sore toe, The song of Meg with all but woe. Parameters, definitions, distinctions, guidelines, rules. They keep popping up. This millimetre, this fat sparing, this blockage, this cell, this adhesion. This bile. This blood, this heme iron, this transfusion, this infusion, this suture, this calcium score, this d-dimer is too high. This, this, that. this sodium, this potassium, this gas, this acid base, this pulmonary nodule, this heartbeat, this ECG, this ECHO, this lack of oxygen, this gene. OH, and that gene too. This b12, this lack of paper and ink, this DARK INK, and feelings, and too many feelings, and oh this history, this mental illness - is it real or not? Should we see? Who is she? What is her background, is she of wealth, is she poor, is she smart or a nark? Who is her family? Who is she berating us to on her phone? Let us see please. Who is this fine mess? It is ok, I am just me, just do not tick me off today because I can be scathing. Just like you. But I am in PAIN, so watch it. And I am at SEVEN. And there is more, this overload, this foul bowel. This stuck food, this piece of me, this gastric issue, this reflux, this migraine, this tissue, this medicine with its side effects, or advantageous effects, this blood pressure, is up, is down, is around, this oxygen level, this low temperature. This high one. This in between state. This sickness, this malady, this illness, this condition, this fake, this real, this ordeal. This infection, this antibiotic, this fungal killer, this wart medicine, this anti-acid, this cutterage, this biopsy, this burning of skin, this mole, this growth, this enema, this cream, this drawer full of creams. The pharmacy in my bathroom looks strange. These asthma meds, these Band-Aids, these antiseptics, these antihistamines, these Panadol, these Maxalon, this ibuprofen, these vitamins, these burn creams. These skin barrier lotions, this chemo cream, this laxative, these fibre drinks, these liver tabs, these migraine patches, this heel balm and b12 injection ampoules. These pads, these Movicol sachets, these sedatives – this POUTPOURRI! This pain medicine, this CBD oil, this opioid like stuff, or that, this nutritional deficiency, this dark place, these necessary tests - on no end roads. On paper trails. You INK take away my holidays. You INK are both saviour and persecutor. You INK are the western world with its joys and sorrows. You bring me thankfulness and you bring me sorrow. So dear INK I am no apologist today for my nasty letters at times, my poems, my questioning my anger, my disappointment, my depression, my sadness, my relief, my grief. It felt good to speak up, and I warn you and I warn you again. Do not mess with this agony bag. Accept and help her. This, that, that, and this. Oh, and this and there is more. So how do we heal, with ink all around - with black INK? She is not one problem, she is COMPLEX. She is a true Zebra black n white striped. And paper sheets and paper skin, resting on her paper bed. Her wayward cells, and bones, blood, and tissues speak as they do. Mystery Ink. You are a shape shifter - you are. But do not you dare shift the blame to me, dear INK, For this paper thin, skin. Is what it is, and it is NOT yours. And dearest symptoms why must you stay and then hide. And then scream loud. I am sensitive to noise. You want to be heard and I hear you. I hate you and I love you, but I still wish you would find a place of your own. Where you really belong. Prying eyes, blind eyes, action plans, non-actions, withering, chronic disease management plans, hydrotherapy, physiotherapy, specialist appts. Wheelchairs, and mobility aids. Break-through pain. OHHHHH ohhh OHHHHH ohhh OHHHHH. Say it, say it, speak. I resent your INK, I do, I do. Pain suffering, illness, bleakness, inertia, cruel joke, funny guy! Good-bye sophisticated life. You did get close. I will not be nice today, I will not be helpful, be accommodating. Okay. Okay. Okay. Our cells are great little workers and then they are not. Some of them live in complete darkness and Do plan to take over the HOST, which is you. Beware ok. I am well fed up with paper and ink. Thoughts views, sayings, all words, all descriptions, Opinions. Let my creased paper body, and my creased paper bed. Go back to its suffering, it does it well. Be testament to my human spirit, pure as it can be. Laugh bone and cackle too, Do it louder for all to see, Why don’t you? Stay abusive Nerve, you will anyways do as you wish. Or keep sleepy, slow, and lethargic. Nervous rigid muscle, keep on keeping, tighten your reins. Brain, oh ball and chain, vice-on-my-head – your thoughts did this. My vice – listening and caring for you all – too much. It is easier to cave into it all. And that I have learnt Brings me to a five instead of a seven, through gritted teeth though. Oh, dam you PAIN. Really the next life will be easier. That is certain. God has promised me. Oh Medicine, INK, Oh Malicious World, You are here and you are amoebic, You crawl, slither, froth, and bite, At this crossroad whereby vitality, peace and other, ran for the green safe hills. To a stronger paper-bark shelter. Indigenous and safe. Navigate me out, it is not too hard, will you? I am a good person. Despite how I sound on here. Of wretched love hate dysphoria. Yes, DOC, you have it too. It is not only ME. You are but human. And I am at times not. Medicine. Inc. INK. Bless you, you too pain. Like birdseed, a sequinned gown, They would glitter them into the crowd each year around Christmas time. It was your smear- fingered -smile Little treat. We curled our tiny bodies into the ruby- lip slippered red of those opulent seats, sat tight as a bow. We savoured the buttons up… Hush, now let us begin. Slam Searing Black. That gunshot spike crack was the very worst sound of my life. I wanted to shred shed wolf peel at my skin. Wings battling uselessly into the wax of lights. You're a hunted animal. Fresh. screams, fever, green gaping horror-mouthed memories bashing again and again and again and again at the walls. Trapdoor. Claw. After a while, you know the hot scent of desperation. It's the ugly, stubborn snarl of curled fag smoke. If you want a light, you always, always, always have to ask them, even though you can hear them: their crabapple laughs crackle, vines choke at your ankles along the whole sterile length of the aisle. Snare, trap, flare. You're cored. You can no longer bear the sight of them. You shrivel in the corner and lick at your wounds. Fawn and Freeze. Retreat, curl up and Dry. Eventually, you don't even recognise your own white face. You are definitely not today The fairest, fairest… Each nightfall, animated eyes blare in this hunter's wood. They watch, watch, watch Watch. Your hair witches with time. You hold out your finger not for a ring, but for yet another bite of heat and blood; Your body spread out on a slab. Be good or they won't let you out… Gasp down til you bloat leak and weep like a frog. It's not real, it's not real. It's not real… Now you're encased into tall ivied walls. What you know is that they long to return the lush butchered prize of your heart. who even is the villain Anymore? One night, someone pads. tears at the plastic with fangs- and there's that familiar sweet purple glint once more. It's winking at you: royal like a cloak. About the author:
I'm an autistic social researcher based in Cardiff with a passion for heritage and museums. I also live with chronic eczema. I use poetry to engage people with research, and I am inspired by connections between artists and their work as well as interpreting well-known histories and stories from fresh perspectives, or uncovering under-appreciated historic figures and the tales they can tell. Lost beneath hopelessness and despair unwilling to understand the difference between wanting, caring or seeking help for hurts we all sometimes feel being alone in our pain. The cost is too much, the thought is so deeply buried under pounds of countless attempts to bargain for relief. Waiting for proof, validation anything to lift the unbearable certainty wanting life to be worth more than this, this discarded buffet of flesh. Dumped to be sifted through by laughing callous hands looking for parts to be salvaged for repurpose. Will this storm never end? Misfortunes dawdle within exhausting memories. Can there be a glimmer, a ray of hope? Drenched, defeated, wrung out, lost and burning for answers or where to look for something to hold on to, something worth more than this flood of perceptions. Standing at an intersection one way a cliff the other shrouded in obscurity. A choice can bring peace or more pain. Not choosing is a choice. Enduring the moment brings no relief only memories of the countless attempts lost to choosing not to choose. Will this time be any different? Wringing our hands dreaming for a sign, motivation, a notion that may bring movement one way or the other. The cliff or obscurity? The discarded pound of flesh or the flood of painful perception? We’ve been here before, touched the ray of hope, discarding hopelessness, to know the rainbows are real. About the author:
Rick Slottow has a self-published book of poetry. It has been over 15 years since he has thought about sharing is work with others. Most has been lost due to technology. Some was printed on paper, but most not gone will never be read. Rick just started writhing again. He is a retired Drug and Alcohol consoler. Recover alcoholic and drug addict. Living in Rhonert Park Ca. he shares his home with his wife a housemate and three dogs, 2 small under 15 pounds and one 0ver 50. In the early stages of Primary Lateral Scleroses, he wants his voice to again be heard. at the window aching for outside sick friends online getting sicker purple heart emoji exhaustion burning up the body dawn i give dad the bitter salad left on my plate handled everyday made smooth grief december rain i’m missing so much of myself About the author:
Sol Howard is a chronically ill trans writer. They have been bedbound with severe ME/CFS for two years. They have plans for lots of novels and short stories about queer people surviving and thriving, but due to illness they currently struggle to write anything else than short form poetry. |
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