In her essay, author Katy Wimhurst explores how the experience of chronic illness challenges established (and often ableist) conventions of storytelling, opening up fiction – and indeed language itself – to new, imaginative possibilities.
At a friend’s house for a writers’ group, we’re discussing our stories. Artha, a parrot belonging to the owner, has joined us, although she is more interested in the plate of fancy oat biscuits than in our literary chatterings. My work is read out and someone jokes that quite a few of my plots come down to ‘someone goes for a walk and some weird stuff happens’. I laugh, well aware that this isn’t most people’s idea of a scintillating read. Then I get distracted by Artha trying to sample my drink.
Later, something prods at my awareness – maybe this isn’t just a case of my lazy plotting. For someone with the illness M.E., someone whose mobility is highly restricted, ‘going for a walk’ is a thing to yearn for. And ‘weird stuff happens’ and with little explanation – a good summary of the experience of chronic illness. I start to wonder whether the structure of storytelling – including what is expected to be satisfying – actually speaks more to certain groups; and, conversely, whether being ill brings unexpected perspectives on ‘good stories’. As Virginia Woolf (1926) notes in her essay ‘On Being Ill’, a person relates to, even perceives, the world very differently when sick.
Getting severely sick with M.E., an illness that isn’t always believed or taken seriously, tossed me into an underworld. As Louise Kenward observes in her brilliant speculative memoir about M.E., it was ‘as if I’d died but had forgotten to finish the job’ (from Disturbing the Body, 2021). I’d had mild M.E. for a decade before I developed severe M.E., so I was used to feeling crap as well as the dismissive stories doctors often told about patients like me, but nothing prepared me for the devastating disability, nor for the shocking disbelief I suffered. My (male) GP’s story at the time was that ‘there was nothing wrong with me’ even though I was bedridden, couldn’t walk more than a few metres, couldn’t watch television for even 10 minutes a day, had to rely on my partner for everything, and much more besides. In retrospect, I think the labelling of physical illnesses, particularly those experienced by women, as psychosomatic is a foremost form of abuse – and misogyny – in modern medicine. Although I was fortunate later to improve very slowly to a more moderate form of M.E. and also to find a GP who listened to me, even now, two decades later, I still feel trapped in a strange, unsettling story where nothing I previously took for granted remains, including a reliable body. This is especially true when a severe relapse hits out of the blue (as happened a couple of years back, and despite being improved cognitively now, I’m yet to improve much physically). Severe chronic illness is like Alice in Wonderland reworked by Franz Kafka – Alice in Lost-Her-Land. So it is perhaps no surprise, then, that I come at fiction from an unusual perspective and don’t always feel satisfied with conventional ways of telling stories.
I’m reminded of Through Navajo Eyes (1972), a book by Sol Worth and John Adair, which explores how the authors taught six Navajo in 1966 how to make films (five of the six had never seen a film), and then observed the patterns and styles of their filmmaking. The structure of the films the Navajo made didn’t correspond to western ones; standard narrative progression with a building of tension wasn’t used. What I remember most is how the Navajo films featured a lot of shots of feet and walking for the sake of walking; the emphasis on motion itself seemed more important than any storyline. In these films, then, different cultural codes or values were at work. I’m not trying to imply that I, a chronically sick person in 21st century Britain, have anything like the same perceptions as a Navajo in 1966, but this book does show that what stories are told, and how, is never entirely free from cultural mores.
Marie Mutsuki Mockett makes this point in her 2016 article about Western and Japanese fairy tales. Such childhood fiction, she suggests, can teach us about what successful story structure is and is not in particular societies, as well as what ought to feel satisfying. So the way children’s stories end in Japan and the West is often different. Here Mutsuki Mockett cites Haya Kawai, a Jungian interpreter of Japanese tales. In western fairy tales such as Sleeping Beauty, Snow White or Cinderella, the stories generally resolve with a conquest or wedding, but in Japanese fairy tales, there is rarely this kind of ending – instead, there is what Kawai calls ‘an aesthetic solution’. In one tale, a woodcutter looks after the mansion of a beautiful woman on the proviso that he shouldn’t look in any of the interior rooms; he violates his promise and steals a few of her pretty objects inside. On returning, she discovers this, and the tale ends by the woodcutter sinking into a slumber and waking alone in the woods, with none of his stolen objects and only a memory of beauty. ‘The hero is left to ponder his own existence against the backdrop of some beautiful image. Or maybe his existence doesn’t matter. Maybe all that he is left with is the beautiful image itself’.
This kind of ending appeals to me as it feels less contrived. When one suffers with M.E, especially with the more severe types, there may well be no wedding or conquest, no slaying the dragon of disease before returning to good or even improved health. One of the few good things you may be left with is awakening to those beautiful details in the world often overlooked – the alluring green of lichen, the flickering pattern of shadow and light on a wall. This certainly isn’t to demand that the structure of all stories should echo that of chronic illness, but it is to ask: isn’t there room for stories that really resonate with sick people, both in content and form; and isn’t there some degree of cultural conceit or privilege in conventional notions of a satisfying story arc and ending?
One story I wrote, ‘The Wings of Digging’, was initially turned down because a magazine saw the ending as too depressing and unresolved, the implication being that it would be published if I addressed this. In this magical realism story, a winged being and refugee works in a job he dislikes on a skyscraper building site, flying to check on workmen. What he really wants is to be an archaeologist and he spends his evenings reading about this subject. Once a year he escapes from normalcy, spending three weeks of holiday as a volunteer on an archaeological dig. During this time, out in the country, he occasionally gets the opportunity to freely fly too – in this version of Britain, flying is prohibited except for work purposes and he only feels safe to break this law somewhere remote. The original story ended with him flying freely one night, a moment of ecstatic escape and assertion of who he is, but in order to get the piece published, I altered it so that he gets ‘spotted’ by an academic on the dig who offers to help him get into university. While I am grateful to the magazine for publishing my story, and the edited version is a more conventionally satisfying read (it appears in my first book Snapshots of the Apocalypse), I felt frustrated that the original ending was considered too insufficient and bleak. Maybe in fiction we need the transformations and resolutions that we don’t always get in life. Maybe fiction demands a genuine change in a character because it primarily speaks to those who can’t imagine a life without much choice.
In Rabih Alemeddine’s brilliant novel An Unnecessary Woman (2014), the protagonist Aaylia observes how she, as a 70-year old single Lebanese woman, has little conceit that she has much agency or control over her life. For one thing, the unreliability of Beirut – a city where there are frequent power cuts and travel routes are redirected daily and erratically – means she can’t force herself to believe in the illusion of personal control, and she wonders if living in more developed countries, with more reliable infrastructure, reinforces an individual’s illusion of this. In the counter-cultural science fiction writer Kurt Vonnegut’s fiction, people’s lack of agency is a hallmark, the characters often struggling against forces they have no power over and don’t comprehend.
In contrast, many popular protagonists in Western fiction tend to be those with bags of agency, such as the resourceful Lisbeth Salandar in The Girl with the Dragon Tattoo or brave Tris in Divergent. Agency involves such abilities as: acting on an environment, making meaningful decisions, and driving the story forward. While this can be an engaging character trait – and important for minorities who historically have been denied agency in fiction – there is arguably a hyper-individualistic fantasy of agency prevalent in the West; the shortcomings of this may be apparent to those with chronic illness, given the (involuntary) loss of agency that disability can involve. When you struggle to walk to the local shop or even the bathroom, when you become dependent on the state and on others, when brain fog clogs your brain, making decisions difficult, then even the most appealing badass character can seem alien or idealised. This sense of alienation is then compounded by normative western narratives about illness.
Sickness is often understood in the binary terms of ‘cure or kill’. It is harder to come across stories in which you get sick, remain sick, there’s nothing doctors can do or they gaslight you, denying you are ill. Yet this experience is all too common, and especially for women. Sickness is often expressed in terms of fighting metaphors, too – winning or losing the battle with a particular disease. Here a version of the hero myth is soldered onto ideas about illness. The hero myth, which goes back millennia, was popularised by 20th-century writers like Joseph Cambell in his The Hero With A Thousand Faces (1949); and Cambell influenced Christopher Vogler’s The Writer’s Journey: Mythic Structure for Writers (2007), a popular creative writing textbook which holds that most good stories can be boiled down to certain narrative structures and character archetypes. The ‘hero’ of such stories is the one who goes out into the world and overcomes obstacles to slay the monster, then returns home with new knowledge. When you get chronically ill, many around you – and often you yourself initially – may be desperate for you to be that hero who slays the beast of your illness and moves on. Or if you can’t slay it completely, to be a hero who quickly adapts to sickness while remaining upbeat and economically productive. However, the experience of long-term illness calls such narratives into question – they are told to help the healthy feel comfortable, in control of their lives, rather than to help the sick make sense of their experience. Such stories, and the fighting metaphors they embody, can help falsely attribute personal agency when there may be none (someone’s cancer has gone into remission due to chemotherapy not their conquering spirit), and, conversely, can be used to blame and shame those who aren’t so fortunate and remain ill.
Susan Sontag’s widely acclaimed book Illness as Metaphor (1978) describes the ways in which illness is ascribed meaning in our culture. To be ill is to be deeply suspect: what did you do to cause your disease? Why aren’t you trying harder to recover? So illness is not just about body malfunction, it’s about the sick person’s character. Sontag’s book may have been written in the 1970s, but the blame and shame game remains today. The contemporary ‘wellness culture’, for instance, is big on holding individuals responsible for their health rather than recognising the role which luck (including that of birth/genes), privilege and circumstance plays.
In 2021, then, there is still cultural hostility to those who don’t recover. Ableist narratives of the sick person’s character or motivation abound, including in the media –‘she/he is lazy, a malingerer, a benefit scrounger, doesn’t want to recover.’ Such stories are politically reactionary, desensitising the public to individuals’ suffering as well as being used by governments to justify austerity cuts to the welfare state. They are also based on a denial of vulnerability and mortality, a refusal to accept we live in perishable vessels – heaven forbid anyone could suffer the destructive whims of disease, accident or injury. At root lies the conceit that if an individual just looks after themselves and is determined, they can control the ultimately uncontrollable – that is, maintain good health. I’ve lost count of how many times acquaintances have suggested my health could improve by doing a vegan diet or meditation or by just ‘getting on with it’. As if it were that simple, as if I haven’t tried all that and so much more, too.
If many stories include ableist assumptions, where do chronically sick people look for narratives that speak to them about their life? Where are the stories in which you are capitulated into an underworld in which nothing is reliable and those you thought would be allies (like doctors or even friends) turn out to be foes; in which little happens and there are no easy resolutions; in which agency is compromised or calls to be heroic are bullshit.
The avant-garde is one source. This term refers to a wide range of art forms and I’m not saying all these are free from ableism, but because the avant-garde’s role is to question dominant cultural forms, it is a useful starting place. For a story with little plot, try Samuel Beckett’s (1953) Waiting for Godot which a critic notoriously described as, ‘a play in which nothing happens, twice.’ Beckett’s writing often features those on the margins of society, homeless or disabled people, and there is usually no resolution – things get slowly, inexorably worse. In the stories of Franz Kafka (1883-1924), who fused elements of realism and the fantastic, a normal life is suddenly ruptured by a strange happening and the character is then trapped in an impossible situation over which he or she has no control. In Metamorphosis (1915), Gregor Samsor awakens one day to find he has turned into a beetle; the rest of the story involves him being subjected to various humiliations and abuses by family members and others before dying. In the short animation film by the Brothers’s Quay, Street of Crocodiles (1986), we witness an oneiric, wordless sequence of events in an underground world of animated household items – light-bulb creatures, ghostly puppets. The visual language draws attention to how everything disintegrates (e.g. screws constantly unscrew themselves) and images suggest pain, confinement or frailty – a broken pocket watch falls open to reveal an inside of flesh, a mannequin is accosted by sinister dressmaker dolls. The end of the film includes the written line: ‘Nothing can ever reach a definite conclusion.’
One difference between the avant-garde and more conventional fiction lies in their approach to language. In the latter, language is seen primarily as a privileged vehicle for human expression and meaning, and in skilled hands this yields something moving. The former recognises the gap between experience and expression – our attempts to translate experience into words ultimately fail. Here, language is seen more of a trap, a deception. If everyday experience is hard enough to translate into language, how much truer is this with sickness, where we are starting with an inadequacy of words anyway. As Woolf said in ‘On Being Ill’: ‘English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache.’
The avant-garde has always enjoyed inventing new forms, including novel words. In this it inspires: taking our pain in one hand, a new sound or unusual word combination in the other, we can marry them so a new composite word drops out. I use the term ‘octovice’ to describe my head pain, a mix between an octopus (with tentacles wrapped around my skull) and a vice; and a ‘cortistorm’ is a flurry of cortisol at 4am that prevents sleep. In her excellent fictional novel about a young woman suffering with M.E. The State of Me, Nasim Marie Jafry (2011) uses ‘velo-gubbed legs’ to describe her feeling-like-jelly, cannot-walk-on-them legs (velo = French for bicycle). I recommend any sufferer develop a lexicon like this, it helps communicate the peculiarities of our experience. But we need a more credible shared language, too – how inadequate are the words ‘fatigue’ and ‘pain’, for example.
Most of all, we need to tell our own stories, to speak from the shadows. While historically, stories about illness – in particular those suffered by mainly women – have been ignored or silenced, more recently this trend is reversing. Telling stories from the point of view of the sick offers us a voice, some sense of agency. Maybe not badass agency; in this version, heroism would be the courage to say: here, I exist, listen. Sarah Ramey’s (2020) witty, poignant The Lady’s Handbook For Her Mysterious Illness is a nonfiction account of her chronic illness, including the medical abuse she suffered; she came to realise the story structure that resonated most with her lived experience was that of the descent to the underworld of ancient myth, a cyclical, non-linear narrative. Disturbing the Body (2021), a series of inventive memoir pieces, draws on speculative forms of writing to explore this subject. Louise Kenward’s ‘Underland’ draws analogies with the Lewis Carroll story: ‘Alice was the only person who made sense: her adventures after rabbits and through looking glasses. I had fallen down the rabbit hole… This was not Wonderland. This was my reality: living with a mysterious illness that no one could see.’ (2021: 93-4).
I don’t often write autobiographically, but how I experience the world, the challenges of living with a long-term condition, informs my writing. Loss and struggle are common themes, my characters often coming from the margins of society or being in oppressive situations. The settings are often dystopias or dark versions of our reality – a place called Nowhere, a town where trees and houses keep vanishing; and my first collection of short stories is called Snapshots of the Apocalypse. Strange elements – magical realist or occasionally surrealist – are frequently present; that magical realism and surrealism have an arguably subversive impulse appeals – magical realism tends to be associated with writers and perspectives of minorities (women, ethnic minorities, non-westerners), while surrealism has always been an attempt to question western culture from within.
I like to think of my own fiction as ‘falling under Perseus’, a term coined by the Italian writer Italo Calvino, referring to the Greek mythic hero who avoided the petrifying gaze of the Medusa by looking at her via the reflection on his shield. If Medusa represents gazing into the dark heart of reality, an experience which can paralyse, then the Perseus figure of the writer doesn’t abandon reality but approaches it indirectly, giving free range to the imagination. As a character says in Kirsty Logan’s book, A Portable Shelter (2017): ‘There is no other way to give you the truth except to hide it in a story and let you find your own way round inside’ (p. 102).
As a concession to getting published and to readers, I usually give my stories much more coherence and resolution than I would ideally choose, and while the pieces in Snapshots of the Apocalypse may be quirky and dark, they all have a recogniseable arc. However, my ‘someone goes for a walk and weird stuff happens’ stories have found a home in more avant-garde magazines like Cafe Irreal, which admires Kafka and publishes unpredictable fiction. In my ‘Crows and Sorrows’, a series of strange incidents culminates with the melancholy character noticing something on a church’s stone floor – ‘a mosaic of colour, an ephemeral patchwork of green, red, blue, yellow, orange…. I don’t believe in God, but I do like living in a world where light streams through stained glass and paints spontaneous artworks.’ Here is the kind of ‘aesthetic solution’ to a story that Japanese fairy tales value. What we are left with at the end is noticing, and then remembering, the striking moments.
I think of the writers’ gathering mentioned at the start of this piece. While the group was always enjoyable, I recall little from that day about our specific discussions. What I do remember is the plate of fancy biscuits being moved round the table as Artha, the parrot, pursued it. Maybe Artha had her priorities right: delicious food over literary debate about plots. Perhaps there is a quiet heroism in being awake to what is important.
About Katy Wimhurst
Katy Wimhurst’s first collection of short stories, Snapshots of the Apocalypse, is published by Fly on the Wall Press. Her fiction has been published in numerous magazines and anthologies including The Guardian, Ouen Press, To Hull and Back, Fabula Press, Cafe Irreal, and ShooterLit. She also sometimes writes literary essays like this. She studied social anthropology at Cambridge and London universities and worked in publishing. She is housebound with the illness M.E. Her website: https://whimsylph.wordpress.com. Follow her via Twitter @sylphsea
This essay was commissioned for our latest mini-series, Our Body’s Bodies
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Feature image: Edvard Munch: The Sick Child I. Lithograph, 1896. Photo © Munchmuseet