Storytelling and Chronic Illness – An Evolution of Time and Place

Writer and psychologist Louise Kenward explores the links between illness writing and writing about place, nature and travel.

Before I wrote about illness, I wrote about place and travel. I have long wondered if these things aren’t in fact the same – illness writing and travel writing. Virginia Woolf implies this to be true, writing of the ‘undiscovered countries that are then disclosed’ when ‘the lights of health go down’ (Woolf 1925). Certainly there are elements of place that we can become more aware of, elements of our body we are more conscious of, when ill. It tells us something about orientation and distance, of time and its passing.

My own experiences of chronic illness, of debilitating fatigue and chronic pain, have had their backdrop of places I’ve lived in too. In times of recovery and change, places have dictated goals and aspirations – to get to the Co-Op to buy my own milk when I lived in town, to reach the sea when I lived on the coast.

While bedbound or housebound, unable to get very far from having somewhere to lie down, the elastic bungee cord of my illness pinging me back to my sofa or bed soon enough, I stared at the ceiling or out of the window. I noticed all those small things that are easily missed or forgotten when you live life at the pace you are supposed to – that capitalist 9-5 clock of productivity, resting only at weekends. In all that in-between time, I watched seasons change and weather fronts arrive and leave. I watched the tides shift up and down the beach, and the trees grow taller and fuller. In all that time of noticing the usually unnoticed, I reflected on how the more-than-human ran on its own time schedules; it didn’t speed up or slow down for any other reason than the turning of the globe around the sun. Day and night were dependably there when little else could be relied on. However desperate my garden looked in winter – a landscape of mud and sticks – the spring would always come, and bring blossom and bright lime green shoots. But more than that, the endless change in these dependable transitions also meant that my change became OK too: the raging black skies of anger or despair were just as likely to fill the sky as white clouds and sunshine, or mist-filled non-committal dampness of drizzle and grey. The inconsistency, and unpredictability of the inconsistent, meant that I could regard my own unreliable inconsistency (living with a fluctuating energy-limiting condition) as just another part of me now too.

A more complex connection to the ‘nature cure’

This connects with ideas of ‘crip time’, where: “Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds” (Kafer 2013). Rather than (or in addition to) bending time, I looked to seek out a different pace of time – from snails, to cycles of seasonal change. Clock time and dates are useful in connecting with other people, but in connecting with myself, and my body, seasonal time and weather cycles are more useful. They do not leave me wanting as much, as I berate myself for another rearranged date or cancellation. They explain, or partly explain, why I am feeling more stiff and in pain or fatigued, extremes of temperatures and the damp at times contributing to flares in symptoms. I can better accept myself and my body, in recognising I am a part of the world around me, responding to the same things the yew tree in front of my house is, and witnessing change in response to cycles that span months, rather than hours or days.

The world of the more-than-human is filled with decay and transformation, of cycles of change that we often seek to sanitise and erase from the human world, but that connect with my own experience of living with chronic illness. Abi Palmer writes about her connection with mushrooms and decay in her essay ‘Self-Portrait as a Mushroom in this Damp and Leafy Forest’:

I have developed such an affinity with the fungal kingdom and its fruiting bodies. To be chronically ill, to be one of the sick ones – a postscript in the wake of a global pandemic – is to live like fungus. No matter how dignified you appear, or how majestic, there is something of a stench of death about you. There’s an association with breakdown and decay. Like a mushroom, I appear strong and vibrant, but I’m very easily pulled apart. I have infirm permeable edges and a lumpy, alien shape. I too am spongy and malleable. I too bruise easily. I too spend a lot of time in the dark. (Palmer 2022)

For those of us who do not inhabit a body free from dis-ease, this offers a more complex connection to the widely touted ‘nature cure’, the ‘cure’ usually enjoyed by a person spending time in ‘nature’ and being transformed as a result – a treatment that can now be commodified and sold, as all good capitalist structures are. Nature writing is a genre that has traditionally favoured the able bodied, the middle class white male – as indeed all publishing and the western world has. This is not new but needed to be named, and Kathleen Jamie’s essay is the marker that many reference, of ‘the lone enraptured male’ unrestricted and unhindered by his (middle class, white) able body (Jamie 2008).

A collection of found objects - a shell, dead bee, fly and small lizard, in a glass box
Untitled. 2022. Louise Kenward. Courtesy of the author.

Lack of representation in nature writing

The sick are not represented, are rarely represented, in publishing or in nature writing. Calls for diversity are thankfully growing, but I wonder what thought has been given to the type of stories that this might bring, not suited to the traditionally-sold narrative arcs. For the disabled and the sick we interact with the world in a very different way to those ‘lone enraptured’ men. As Polly Atkin writes: “Everything we experience of the world we experience in and through and with our bodies. Our relationship with our body informs our relationship with the world. For some people, this is easier to forget than others” (Atkin 2021).

In seeking to gather some of these stories I have set up the project Moving Mountains, an Arts Council England supported project where I am compiling an anthology of nature writing by writers and artists who live with chronic illness and disability. Those of us for whom trekking hills and climbing mountains is often out of reach, but who are equally engaged in and connected with the world of ‘nature’ – it just looks different to what we might assume, or have previously read – a richness of stories that are to follow. Moving Mountains is about the connection we have, as much as the access, for access is not always possible to those of us with energy limiting conditions, whatever accessibility provisions are made (while accessibility is still an important ongoing consideration). The work of Elisabeth Tova Bailey, for example, in The Sound of a Wild Snail Eating brings in one of those different perspectives, of the small and the domestic – of bringing nature ‘in’ (Bailey 2010). Where Bailey wrote about her year-long experience of living with a mysterious illness, which meant much of her life was spent in bed, she adopted the snail that was brought in to her bedroom on a pot plant. Rather than ask the friend who brought the plant to put the snail back outside, she asked them to bring in a terrarium in which to offer it a home. In the weeks and months that followed, filling the terrarium with moss and leaves, Bailey tracked the snail’s daily routine and learned its dining preferences. The snail was something Bailey could keep pace with, something she learned more about precisely because of her durational proximity. Bailey later wrote scientific papers about the species because of that knowledge.

Similarly, Polly Atkin writes of Dorothy Wordworth’s ‘sick bed consolations’ in Recovering Dorothy, as Dorothy filled her bedroom with the more-than-human – branches from trees and pots of plants, views out to the garden, and a pet robin who visited (Atkin 2021). I think of my own collections I have brought into my home, things found and picked up – from the beach or the woods – collected during those times when I have been outside, the gathering of objects in part a wish to extend those moments, or reminders of those times. I have followed the progress of (what I believed to be) a dead magnolia tree that I had planted in my garden and that survived just a year. Uprooting it to move house, it sat in a pot for months before I was able to replant it again, clearly a fruitless task but one I insisted on. Some weeks later I saw the beginnings of new leaf shoots and I wondered again about the importance of the environment we are in: what is needed for us to survive and thrive? I am following the almost bare tree’s very slow but steady growth closely: two small leaves, both of which got nibbled and eaten; and then another which is now a small close group of three. I will check on it each time I go into the garden.

A collection of found natural objects - bones, shells, dried up sea creatures - in an old fashioned display cabinet
Untitled. 2022. Louise Kenward. Courtesy of the author.

What is meant by ‘diverse’ stories?

In considering the publishing world, in calls for ‘diverse’ stories and authors, what is missing from this, perhaps, is the acknowledgement that these will be different stories, different narratives, to those we might be more familiar with. Indeed, as Elspeth Wilson writes for the Inklusion Guide:

In Western literature, we are often encouraged to think in terms of the narrative arc, but there are so many shapes stories can take that don’t necessarily fit this mould. To do justice to the myriad, varied stories that deaf, disabled and neurodivergent writers want to tell – which may or may not explicitly centre disability – there needs to be a will to get these stories out into the world which by necessity requires a rethink of the idea of what is ‘commercial’. (Wilson 2022)

Sarah Ramey’s The Lady’s Handbook for her Mysterious Illness, comments on the inadequacy of the (traditionally told) hero’s story for people with chronic illness and disability (Ramey 2020). Ramey instead parallels our experience with the heroine’s journey – one that plunges depths and goes into the darkness, the stories of Persephone and Hades. These are the complicated and nuanced tales of illness, the incomplete, the underground and inward journeys of the underworld, the messy stories with caveats and compromise. Most importantly, there is no ending: it’s an ongoing cycle and a constant work in progress.

And for me, as for many others, writing is one of the most powerful things we can do, one of the most powerful ways we can use our voices and reconnect with the human world in exploring our connections with the more-than-human. As Khairani Barokka writes, in her introduction to the poetry anthology Stairs and Whispers:

It is through stanza that communion happens between the shades of life that we all know can’t be enumerated, can’t be delineated, can’t be kept hidden from ourselves – despite how ignorance about our varied, glorious bodies and minds perpetuates systemic violence and forced disconnection, even from our own experiences. (Barokka 2017)

I wonder how much change can be brought, by connecting with and voicing these stories, in recognising illness as a part of life, in recognising disability as an ordinary part of life, in recognising human beings as a fundamental part of nature, that we might not get a bit better at looking after the world around us, and those of us who live in it?

 

References

Alland, S., Barokka, K. and Sluman, D. 2017. Stairs and Whispers: D/deaf and Disabled Poets Write Back. Rugby: Nine Arches Press.

Atkin, Polly. 2021. “All the living I have left to do: a disability poetics of dwelling.” Magma 79, 38-39.

Atkin, Polly. 2021. Recovering Dorothy – the Hidden Life of Dorothy Wordsworth. Salford: Saraband Books.

Bailey, Elisabeth Tova. 2010. The Sound of a Wild Snail Eating. Green Press.

Barokka, Khairani. 2017. “On Living Our Poetries” in Stairs and Whispers: D/deaf and Disabled Poets Write Back. Eds. Alland, S., Barokka, K. and D. Sluman. Rugby: Nine Arches Press.

Kafer, Alison. 2013. Feminist, Queer, Crip. Indiana University Press.

Jamie, Kathleen. 2008. “A Lone Enraptured Male”. London Review of Books, vol. 30, no.5, 6 March 2008, 25-27. https://www.lrb.co.uk/v30/n05/kathleen-jamie/a-lone-enraptured-male

Palmer, Abi. 2022. “Self portrait as a mushroom in this damp and leafy forest” in This Book is a Plant – How to Grow, Learn and Radically Engage with the Natural World. Wellcome Collection. London: Profile Books.

Ramey, Sarah. 2020. The Lady’s Handbook for her Mysterious Illness. London: Fleet.

Wilson, Elspeth. 2022. “If you want diverse books you need to change your definition of commercial”. Inklusion Guide. https://www.inklusionguide.org/blog/elspeth-wilson

Woolf, Virginia. 1925. “On Being Ill”. The New Criterion. https://thenewcriterion1926.files.wordpress.com/2014/12/woolf-on-being-ill.pdf

 

About the author

Louise Kenward is a writer, artist and psychologist. She begins a practice based PhD this Autumn, exploring the relationship between unstable landscapes and her own unstable chronically ill body, with the Centre for Place Writing at Manchester Metropolitan University. She can be found on Twitter @LouiseKenward. For more information on Moving Mountains visit www.movingmountainsanthology.wordpress.com.

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