On Thursday my aunt died, on Friday my mobility scooter was stolen. Oh my god Matt, that’s awful that is fucking shit I can’t believe… is how my friends express their outrage that somebody would steal my main mobility aid from right outside my house. They struggle to find words of indignance about Eleanor’s death, which comes fifteen years after her secondary breast cancer diagnosis; her sister (my mum) died three weeks after her diagnosis in 2016. Eleanor was keenly involved in her evangelical church, but I never experienced her as judgemental or guarded. If I ever had something risqué to tell her about I would remember the time she told me: Matt, I am absolutely unshockable. She played trumpet, she fostered, she sewed, she cycled. And since my mum’s death, she was the closest person I had to a mother. Because my aunt has died, I decide to wear in a pair of new blue shoes, so I’ll be able to wear them at her funeral, dress code: colourful and casual. I plan on wearing a pair of blue Vans Sk8-Hi’s, rather than my old red and blue Vans Sk8-Hi’s which I’ve worn every day for two years and which are developing holes. Because my mobility scooter has been stolen, I have two weeks where I will have to walk, or get a bus or taxi, meaning more opportunity to work through the spike in my chronic pain caused by new shoes. * In Hans Christian Andersen’s fairy tale ‘The Red Shoes’, Karen is made shoes with scraps of red cloth, because she cannot afford anything else.(1) The first time she wears them is at her mother’s funeral, where an elderly woman decides to take her in. Karen is taken shopping for proper shoes; her new carer will not abide the ostentation of red shoes, but is tricked by Karen into buying them since she is blind. Karen wears them to her confirmation, where the shoes are cursed by an old soldier. When worn, the shoes dance uncontrollably, but Karen cannot resist abandoning the old woman on her deathbed to wear them to a ball. She cannot get the shoes off, and dances through nights and days. She eventually seeks out the executioner, who offers to behead her; she presents her feet instead, freed from her frenzy and able to repent her sin. * Sitting on the sofa in my mum’s house waiting for Eleanor to die. Memories of watching all 208 episodes of How I Met Your Mother when I became chronically ill aged 18, of sorting piles of Mum’s belongings after she died, dig into my back like lumpy cushions. My oldest cousin Deborah, fifteen years my senior, bought the house from me and my brother. Where she felt distant growing up, since my mum died she has become my closest cousin and one of my closest friends. Mum left her some money, which she used on the solicitor’s bills in her divorce from her awful husband; she also left the evangelical church and became involved in Quakers, all moves Mum would have approved of. Deborah, a nurse, is telling me about a patient with fibromyalgia who she says gave the condition a bad name. This woman, passed back and forth between rheumatology and the pain management clinic, had leg pain so long and so bad that she demanded the NHS give her an amputation. This is, of course, a madness. Pain from fibromyalgia does not originate anywhere apart from a confused mass of nerves; chopping off a leg would most likely mean pain would concentrate in another body part, not to mention the extensive muscular-skeletal problems experienced by amputees. I ask Deborah what she means when she says this woman gave my condition a bad name – that we should suck it up and present ourselves as palatable for the medics? that it made her think I really don’t fancy getting that one? – but she cannot say. I assure her my pain has never led me to wish for a limb amputation. * I identify with Karen: she chooses red leather shoes, perhaps to reenact the trauma of her mother’s funeral, attempting to make something right; when it feels too much to bear witness to the death of her second mother-figure, she abandons her to go dancing; she loses her freedom twice – once to the shoes’ power and again when her feet are amputated. The story is rich in themes, but ultimately, Amanda Leduc’s Disfigured: On Fairy Tales, Disability and Making Space led me to conclude that Karen’s frenzied dancing and eventual amputation constitutes disability and disfigurement as punishment for her immodesty before God.(2) * Twice upon a time my mother died. That is how this story would begin if it were no longer happening. But since it is happening now, in my body, in the room, in the shoes (there was an old lady…) I will tell it with the tense it is due. As her sister arrives from the other side to take Eleanor to be reunited with their mother, outside the window a field of sunflowers is going to seed. Leaving for home, I pocket a handful of possibilities. Since home is only a short flight away, I rub my wings together, and take off into the wind. I’m looking forward to sleeping in my own bed. The pain throughout my body ends where my wings begin. No witch cursed me to feel this pain, no fairy godmother blessed me with flight; each came to me one day with no more fanfare than a morning cup of tea. The very next morning I wake to find my wings lying petrified on the bed like a butterfly pinned. After desperately trying to stitch them back on, and after making some phone calls, I figure I can make it to the funeral, organised for the morning of the fourth day, if I walk and take the rest and recuperation I know I’ll need. In the corner of my bedroom stands a new pair of new blue shoes Eleanor gave me for my last birthday. Gifted a month after I’d got my wings, they’ve been left unworn. * My imagination, like us all, has been conditioned by the stories I’ve consumed. Leduc writes that ‘fairy tales often pivot on something or someone becoming different’, such as Disney’s The Little Mermaid changing her body to get the man she desires, which leaves us wondering how we can achieve contentment without fundamental bodily transformation.(3) Furthermore, when disability is not used to signify evil – ‘the deformed body giving face to the deformed heart’(4) – the disabled protagonist ends up cured of their disability, imparting the message that no happy ending can take place while disability exists.(5) A reoccurring theme in fairy tales is that rather than society changing to include and enable the outsider, it is the individual who changes.(6) How, then, to retell this story without feeding the ableist narrative that the problem exists within the disabled person? * Wearing in new shoes is a whole-body process for me. The shoe’s sole determines the angle at which the foot rests while standing, which in turn asks the muscles of the legs to bear weight in subtly different ways, arranging the hips, back and neck in a formation novel to those specific shoes. One might think switching to a new pair of the same make and model would be fairly easy. For me, it is not. The old shoes’ soles have worn with my specific weight distribution as I walk, causing a subtle but definite difference. Additionally, the new soles are much stiffer, requiring the body to work harder to bend them when walking. And because the material of the upper is rigid, it presses on the foot in unpleasant ways, impacting the rest of the body. Think really bad reflexology. * At my grandparents’ pretending everything is ok. A few weeks ago, when we cremated their remaining daughter, they sat in a side block, away from the family; Grandad couldn’t deal with mourners coming over to express their sorrow. They tell me I look well. When I leave the room, they shout to each other: Doesn’t he look well? Yes love, he looks so well. The TV blares, drowning out all possibility of being anything other than well. In Coronation Street, Paul has degenerating Motor Neurone Disease.(7) A few weeks ago he gave in, accepting he needs a wheelchair. Today is his wedding, and he insists on walking down the aisle, supported by two women, egged on by an acoustic version of Ain’t No Mountain High Enough. In my notes for this essay I write: I am not like Paul. * I don’t love the term ‘invisible disability’; it lets people off from paying close attention to those around them. I think of the time Deborah told me I was moving like I was in pain. I think of my bitten nails, the matted fleece that shrouds me all winter, the state of the kitchen. But yes, unless you know me, I do look like a healthy young man. These days, when I’m not using my mobility scooter, I carry my walking stick, even if I don’t think I’ll need it. I wear my sunflower lanyard on public transport in case it gets busy. It’s good to have a visual marker of what’s going on inside. * It is a well-worn storyline: the disabled person who wants to overcome their disability for one special, significant and public moment. The preparation is full of expensive and painful physiotherapy which can produce only temporary results, and laden with anxiety from the goal’s pressure. While the public overcoming of disability is framed as an opportunity for the disabled person to achieve pride and self-worth, these measures have been created by the unrealistic and discriminatory standards set by the abled world. The disabled person would feel no need to cast away their burdensome wheelchair or walking stick… or comfy shoes (Shit.) were it not for the audience who tells them they would be lighter, freer, more worthy without. * Once upon a time my new blue shoes banished all my pain no try again (8) Once the shoes a gift sung motivational songs & I scaled mountains forded rivers no try again Once my shoes squeezed my feet blue they dropped off everybody rushed to my aid no try again * Since I’ll be walking for at least fifteen minutes today, I yank the laces through their eyelets, cinching my feet. I tie a double knot. As I set out, pedestrians young and old leap out of my way, many into oncoming traffic. Before long, I come upon a street sweeper, who insists on forming a procession in front of me to ensure no twig or pebble upsets my path. When I stop for lunch, and to rest for the remainder of the day, I have to duck the card reader flying at my head. The cashier says: I sorry didn’t sorry think sorry you sorry could sorry reach. The next day something has to change. I slip my aching feet into my shoes and loosen their criss crossing laces, tying a bow that barely holds. As I walk, every few minutes I come to a workman’s van playing invasive music and parked so high on the pavement that I have to walk in the road. An acquaintance bumps into me with a heavy bag which they leave in my care. After waiting an hour for their return, I am forced to add their load to my own. When my day’s travel is complete, I am led up an endless staircase to a room holding a bed of bricks and shingle. I ease off my new blue shoes to rub my red and aching feet. On the third day, I wake with a strange clarity. Picking up my new blue shoes, I flex them one way and the other, before putting them on. I tie a knot I have never used before, giving my feet enough room to wiggle whilst feeling held safe. I find a button outside my bedroom door, which presents a spiral slide for my descent. For the whole of my walk it is as if a sunflower were pinned to my chest: people step aside without making a fuss, and when I come to steps passers-by offer to take my bag as if it really is no trouble. My cousin meets me halfway and carries my bags to her house. In the spare room she has set up a memory foam mattress with an assortment of hard and soft pillows; a new jar of the vitamins I’ve forgotten to pack sits on the windowsill. * Eleanor’s funeral is the same day as my flatmate G’s top surgery. The surgery goes smoothly and when I get home G is in bed, high on codeine, their partner washing up in the kitchen. For the first two weeks, he sleeps on the sofa bed and is an all-round five-star nurse. On the first post-surgery weekend, Brighton Pride, when I pop back to check if they need anything, I find three friends have come round in their glitter and sequins to play board games and cook a meal. It doesn’t take long for a what about me to creep in, and as much as I try to untangle this thread of selfishness from the story, it won’t come loose. This outpouring of assistance snags on the deep loneliness of my condition. It tugs on my need to eke out requests for help and my perpetual desire for this to be the last time I need to ask, until these parts of me trail behind like shoelaces in the rain. I have never wished for amputation, but there are days I’d take a simple car crash. * The morning of the funeral I tie my new blue shoes carefully, along with red trousers and a yellow shirt. Arriving early, the church is already an aviary of colour. When I become tired of standing and greeting people, I join my family in the front row, listening to jazz and swing while we wait for the service to begin. It’s only when the cheesy praise music starts, all electric guitar and viscous vocals, that my crying stands up inside of me. During the eulogies my feet begin to hurt, so I kick off my new blue shoes and rub my soles through my socks on the worn carpet. It’s soon my turn to get up and read the poem I made for Eleanor’s 65th two months ago, and as I stand, my cousin takes my hand. She walks with me three paces to the stage, holds my hand as my sock feet climb three steps, and stands three paces behind me to the left as I figure out the lectern and mic. As I begin to read, I look up, and, in the eyes of the front row, I see myself reflected: a sunflower, but also a bluebell, a daisy, a chrysanthemum, a daffodil, a rose. * I wanted to end there: on stage, seen in all my pain. In all my complexity and contradiction. Shoeless. In The Wounded Storyteller, Arthur W. Frank tells us that an illness narrative must ‘tell the truth that the interruptions will continue’, that ‘tidy ends are no longer appropriate’.(9) So the truth is: I had to put my shoes back on, and I couldn’t remember the knot that was just right, and, despite all that walking, they weren’t yet worn in. References 1. Hans Christian Andersen, ‘The Red Shoes’, in Fairy Tales, trans. by Tiina Nunnally (London: Penguin Classics, 2004), pp. 207-214. 2. Amanda Leduc, Disfigured: On Fairy Tales, Disability, and Making Space (Toronto: Coach House Books, 2020), p. 69. 3. Leduc, Disfigured, p. 41. 4. Ibid., p. 80. 5. Ibid., p. 68. 6. Ibid., p. 187. 7. Coronation Street, ITV One, 2 October 2023, 20:00. 8. Here, I pay homage to Alice Oswald's poem 'Dunt: A Poem for a Dried-Up River' in Alice Oswald, Falling Awake (London: Jonathan Cape, 2016). 9. Arthur W. Frank, The Wounded Storyteller: Body, Illness and Ethics, 2nd edn (London: Chicago University Press, 2013). p. 59. About the author:
Matt Alton’s recent poetry, written in a mouldy basement flat bed, is forthcoming in Knee Brace Press and Written Off’s anthology Ey Up 4. Other poems have been published in Under the Radar, Ink Sweat & Tears, Lucent Dreaming, Flights, and Broken Sleep's Masculinity: an anthology of modern voices. His film-poems explore grief and inhabiting the city with a disability: Brighton, Unfinished was commissioned by Apples & Snakes and is available on YouTube; Ways to Speak Absence was a collaboration with artist Chris Alton, composer Kirsty Martin, and members of Hullabaloo Community Quire. Since 2025 he lives in Manchester, UK.
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