Charlotte Heather explains why chronic illness stories can productively trouble standard ideas about narrative arc and resolution.
Lazard wrote that chronic illness ‘experiences are difficult to narrativize: they have no arc’ (Lazard 2013) and after reading that essay my brain began to whirr. As a writer with ME/CFS I wondered if such experiences are truly unnarratable (Warhol 2005) or if, perhaps, narrative conventions, like so many cultural and social conventions, are just not fit for chronic illness and its communication. If so, what exciting potentialities for narrative are there for chronic illness (CI)? Having run many workshops within CI communities I have seen first-hand the creativity in attending to such questions and the hunger for ideas there. My work explores narrative approaches to chronic illness from a theoretical and practice-based perspective, thinking about how one can crip and queer traditional narrative notions to better communicate this seemingly unnarratable experience. Alongside narrative shape and articulations of crip time, I focus on narrative resolution and the ways in which CI narratives trouble it. My own illness is unlikely to be cured in my lifetime and by its very nature it resists resolution.
Sontag writes that ‘narratives can make us understand’ (Sontag 2003, 89) and there is undoubtedly a need within CI communities to have others understand and acknowledge the experience of CI. This applies in both the medical realm, where disease may be treated without improving quality of life because patient experience is placed second to that which objective tests can tell us (Oakley 2007), and in culture where such acknowledgement could lead to attitudinal changes in the non-sick that could improve the experience of the ill. It’s important to recognise the limitations of narrative, which has become somewhat monolithic in the field of medical humanities (Woods 2011), and to honour the power of other forms such as poetry, visual art, performance and sonic work, to articulate the CI experience. Narrative, however, remains an important tool of communication and creative expression in CI experiences (Bolaki 2016), and being one of the major forms I work in, it’s an important place for me to dig.
Two approaches to the unresolveable
How do we ‘resolve’ the unresolveable? Should we eschew notions of narrative resolution or a fixed idea of closure altogether when thinking about CI narratives? Or are there approaches that can crip and queer convention, playing on readerly expectations, to help communicate such stories? If ‘to queer’ is to take something and to trouble it or make it strange (Barker 2016, 31) and ‘to crip’ is to disrupt conventions that uphold neoliberal capitalism and its imagined composition of body and sexuality (McRuer 2006, 2-3) then this approach to narrative resolution is apt. This is not to posit that narrative resolution automatically upholds neoliberal capitalism, only to offer some potential ways in which we can find narrative endings that better tell embodied CI stories.
Though I am in an early stage of my academic research I have been living with illness, and thus conducting a kind of embodied research, for years. Through this time I have come to see certain socially and/or narratively expected resolutions to illness narratives that sit at odds with the lived experience of CI. My research has further cemented this list, which is not exhaustive. I do not aim to imply that all of these options are ‘bad’ in relation to illness narratives – I firmly believe people have the right to their own stories – but I do take issue with the prolific nature of such narratives in literature and culture that reify damaging ideas of how one should experience CI.
Recurrent narratives around chronic illness
The first and most familiar narrative is that of the cure resolution. This feeds into Arthur Frank’s ‘restitution narrative’ in which ‘yesterday I was healthy, today I am sick, tomorrow I will be healthy again’ (Frank 2013, 77). Cure is an unlikely outcome of most CIs, though not all. The prolific nature of this resolution in medical institutions and pharmaceutical advertising, alongside literature, is an obviously unhelpful narrative especially in relation to the CI experience (but also many other illness experiences). Cure is simply not a possibility for many, alongside the issue that this narrative helps to uphold neoliberal capitalist ideals of a life’s value and the supposedly ‘natural’ state of health.
Another resolution that echoes this is that of diagnosis. This often comes in the form of a ‘quest narrative’ (Frank 2013, 115-36), one that involves complex and difficult symptoms, that resolves in a eureka! moment as the puzzle is solved. We see this proliferate in medical dramas (though admittedly it’s been a long time since I’ve watched Grey’s Anatomy) and it houses a dramatic arc so well. The implication of such a resolution is that with diagnosis again comes either a cure, or at least a sense of understanding of one’s condition that resolves the tensions illness has presented. Anyone who has experienced a slow journey to diagnosis will know this is rarely the case and, though diagnosis can have benefits within personal, social and work-based realms, most CI experiences continue to be complicated and ‘unresolved’ post-diagnosis.
This leads on to the resolution of beatific acceptance: through illness and pain and struggle the person with CI reaches some kind of transcendental saintly state. They are above and beyond reproach. They are serene. Accepting one’s illness is generally useful for one’s well-being but this kind of narrative denies the person with CI the humanity of a natural ongoing frustration or grief at their illness.
Then there is the ‘supercrip’ who overcomes their illness to achieve wildly unlikely feats: they climb the mountain or win the Nobel Prize, despite it all. If somebody wants to do this and does, that’s fantastic for them, but as one of the more common narratives it sends a message that the stories of those experiencing a disabling CI are only worth telling if they achieve something remarkable or can inspire others (Young 2014).
Another common resolution is the death of the protagonist, from Victorian novels featuring saintly deaths from tuberculosis (Bronte 1847, Alcott 1869) to young adult ‘sick lit’ novels like The Fault in Our Stars (Green 2012), though we see this less in chronic illness narratives as they’re often autobiographical. The person with CI can be used as a tragic figure after death to either uphold or fight against social inequalities and neoliberal capitalism, creating in them a kind of martyrdom.
The mainstream publishing focus on satisfying resolution
These resolutions, depending on their deployment, uphold conventions of what a resolution is supposed to do. It resolves tensions, it ties up loose ends, it garners satisfaction and it gives a narrative a sense of finality.
With all the experimentation we have seen in Western literature in the last century (and over the centuries, of course) there are untold numbers of stories that end without resolving narratives in such a conventional way. Conclusion has been problematised by many writers, creating endings that are celebrated for the frustration they cause (see Joyce, Beckett, Kafka, Foster Wallace), and it should be noted the most celebrated are often white male authors. No doubt many chronic illness narratives are written that eschew this conventional closure, though how many of them get published? In mainstream publishing I would argue that it is very rare; they don’t conform to ideas of readerly satisfaction and thus are less likely to become bestsellers. Through independent publishing we are joyfully getting to see more of these kinds of narratives, in novels such as Sanatorium (Palmer 2020) and Metabolize if Able (Ad 2018), anthologies, and magazines like SICK and Ache. We can hold out hope that this may lead to more writers playing with the presentation of chronic illness and showing us how narrative can be disrupted, jolted, bent and cajoled into endings that fit.
To close this piece, I want to offer some ideas of what an unconventional narrative ending might look like, one that feels more in dialogue with the lived experience of CI, in the hope that to those writing it might be generative and helpful in the forming of the writer’s own unique approach to story and its closure, and in doing so leave this piece of writing somewhat unresolved itself.
What would a narrative ending look like if the diagnosis convention was subverted? What if a cure made everything worse? What would it mean to actively frustrate the reader and provide no satisfaction? How would it feel to finish the narrative as we’re often told to start, in medias res? Could a resolution move beyond the text itself? Can the communication of an experience be a resolution in itself?
About the author
Charlotte Heather is a writer, workshop facilitator and the founder of the remote body, a platform for remote DIY arts events and workshops that prioritise chronically ill and disabled people. Their PhD at the University of York, in English with Creative Writing, explores chronic illness and narrative in contemporary literature, with a focus on crip time, story resolution, shape and ideas of cripping narrative form. They would love to discuss themes of their work with researchers looking at overlapping areas and can be contacted on ch2365@york.ac.uk, or found on Twitter @lottyyy and Instagram @lottyyyy, alongside @theremotebody.
References
Alcott, Louisa May. 1869. Little Women Vol. 2. Boston: Roberts Brothers.
Barker, Meg-John and Scheele, Jules. 2016. Queer: A Graphic History. London: Icon Books.
Bolaki, Stella. 2016. Illness as Many Narratives: Arts, Medicine and Culture. Edinburgh: Edinburgh University Press.
Bronte, Charlotte. 1847. Jane Eyre. London: Smith, Elder & Co.
AD, Clay. 2018. Metabolize, if Able. Indiana: Monster House Press.
Frank, Arthur. 2013. The Wounded Storyteller: Body, Illness and Ethics. Chicago: The University of Chicago Press.
Green, John. 2012. The Fault in Our Stars. New York: Penguin.
Lazard, Carolyn. 2013. “How to be a Person in the Age of Autoimmunity”. https://static1.squarespace.com/static/55c40d69e4b0a45eb985d566/t/58cebc9dc534a59fbdbf98c2/1489943709737/HowtobeaPersonintheAgeofAutoimmunity+%281%29.pdf. Accessed 08/11/22.
McRuer, Robert. 2006. Crip Theory: Cultural Signs of Queerness and Disability. New York: New York University Press.
Oakley, Ann. 2007. Fracture: Adventures on a Broken Body. Bristol: The Policy Press.
Palmer, Abi. 2020. Sanatorium. London: Penned in the Margins.
Sontag, Susan. 1978. Illness as Metaphor. New York: Farrar, Strauss and Giroux.
Sontag, Susan. 2003. Regarding the Pain of Others. New York: Picador.
Warhol, Robyn. 2005. “Neonarrative; or, How to Render the Unnarratable in Realist Fiction and Contemporary Film” in A Companion to Narrative Theory. New Jersey: Wiley-Blackwell.
Woods, Angela. 2011. “The limits of narrative: provocations for the medical humanities”, Medical Humanities, vol. 37, no.2, 73-78.
Young, Stella. 2014. Ted Talk: I’m not your inspiration porn thank you very much. https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much. Accessed 08/12/22.
Thank you. Narrative arcs structured by cultures based on control, conquer, extract, export, fix, reduce for security-comfort of those invested in One story, worldview that centers themselves and erases, marginalizes, others. We’re all terminal. How we move through, limping, kicking, groaning, giggling, weeping, screaming, kissing, creating, loving, looks different from many angles, senses, experiences, validities expressed in form and formlessness, frames in moments bent and curved, dissipated, presence and absence carved and carving, flowing, glowing, freezing, drying. Violence assumes binary that silences and excludes dynamic unfolding, suffering, joy, personal and collective reassembling. & so it goes, I-we go…uncaptured , boundaries permeable for life, seasons, processes, deaths.