Practice Research with Chronic Illness, Part 2

A series of disparate discomforts: Jane Hartshorn continues her reflections (see part 1) on the challenges of conducting creative writing practice as research in the medical humanities while living with the chronic illness she seeks to represent.

 

V

I’m so tired of all of this. I want to be the person I used to be, the real me. I feel sometimes that it’s all a dream and surely I’m about to wake up now.

The Cancer Journals (Lorde 1996, 16)

Sometimes there are days, weeks, where the fatigue never lifts.

 

28/01/20: I was so tired yesterday. I hope today is better.

 

I feel as though I am constantly pressing reset and it is difficult to imagine how one day might lead to the next, or how one sentence might lead to the next. I am writing directionless, words scattered upon the page, unsure of how one word will connect to another.

My body lacks continuity; the body I had and knew as a child does not match the one I have now. Puberty (as it developed in tandem with illness) was not experienced as a natural progression, but as a rupture. I don’t identify with my body, the way it has changed over the years, seemingly following its own biological map.

I inspect my body for consistencies – a birthmark on my neck I’ve had since a child, another one on my left side.

 

I still bear the marks of the previous summer: a red blotch on the inside of my right thigh where the saddle of my bike pinched the skin; a yellow slice of toenail from a long walk along the coast in too-small shoes. There is a certain satisfaction in seeing the discoloured part of the nail shrink as it grows out.

(from ‘Partitions’, unpublished)

 

I look at what I’ve written the day before and can’t find a way into it. Its incoherence, its threadbare logic, is too close to my own bodily incoherence. I don’t recognise anything I’ve written. The words twist into an unfamiliar shape.

 

VI

My body had become a kind of quicksand, and I was sinking into myself, my disease.

At the Will of the Body (Frank 2002, 27)

I do not trust my body; its moods, fluctuations, daily unpredictabilities. I become frustrated as I am never sure how hard I should push myself. Is giving in to the fatigue giving up? Will I reach the other side if I just keep going?

Since I was a teenager, I have internalised a perception of myself as lazy. This personality trait dogged me throughout secondary school, university, professional life, and now as a PhD candidate. Before I had a name for chronic fatigue, I used to call my daily submersions ‘mind blocks’. When I am experiencing a mind block, I can’t read, listen, or focus. A wall comes down between me and the world.

 

09/10/20: Didn’t get out of bed until about 2.30pm today. Feeling really exhausted, almost as though I have a hangover, and no appetite or energy to do anything. Think I’ve been pushing myself too hard. I feel really empty.

 

I often choose not to fight myself and succumb to the encroaching waves of fatigue, slipping away into the blank of sleep on my bed.

Sleeping like this is not restorative, it is more like waking up after an anaesthetic, cotton mouthed and confused. I wake disorientated, the continuity of the day disrupted yet again.

A photo of a twisted tree branch lying on muddy ground, with the shadow of the photographer in the foreground
Image courtesy of the author

VII

But you could put me down on the land I love most in the world, and I would still be lost inside it, the familiar made alien and unsteady by my inability to fuse its fragments into a whole.

Places I’ve Taken My Body (McCully Brown 2021, 29)

I wake up in the middle of the afternoon, and it’s dark. I wake up in the middle of the afternoon and I have no idea where I am. What city, country, or year it is.

 

I wake in darkness                   the door the desk

obliterated

the window a gasp       the feeling of falling

my hands vermicular    along the wall

palming for the light switch

(Hartshorn 2023, tbc)

 

I try to pick up the thread of the day from where I left off and wonder what I was doing before I fell asleep. What was I thinking? How was I feeling?

This perpetual feeling of starting again, of interruption and erasure, is like trying to hold onto a thought but feeling it slipping away. Of finding myself in the bathroom and forgetting why I went in there.

I am afraid of falling asleep, of the rubbing out of the day.

 

28/04/20: It’s almost 7pm and it doesn’t appear to have rained yet, although Mum said there was a shower when I was asleep.

01/05/20: Fell asleep before lunch and woke up after 3. Must have been asleep for at least a couple of hours.

It hasn’t really rained as much as I thought it would. Every time I go into the garden, it’s wet, but I seem to keep missing the actual rain.

 

There are gaps, lapses, recurring across the days, weeks, months.

I am trying to piece the day together – what did I miss?

 

10/04/23: I had a dream that the trees I can see from my desk were in full leaf, blocking the square panels of glass with a verdant green. I knew that the day before the branches had been etched starkly into the sky, and I was confused, felt a jolt of fear that I had missed something crucial, that time had jumped ahead whilst I was absent.

 

There are absences I am trying to bridge. Writing draws connections between things – ideas, images, feelings.

But there is a lack of a forward thrust, too many overlaps and circling back to the same points. I am constantly on the periphery of my thesis, revisiting the same ideas again and again, incapable of any kind of objective overview or progression.

 

Everything has myriad memories attached to it. There are places where time congeals, overlaps, becomes knotted. Sticking points that hold multiple versions of myself. I circle these places like I’m haunting my past, looking for evidence that I once lived there.

(from ‘Partitions’, unpublished)

 

I tell myself that if only I can introduce some structure, some routine into my life, I will finally begin to make progress.

 

12/08/22: I can write for one or two hours a day. Surely, if I do this every day, I will make progress. Something will start to emerge.

 

How can I knit together the fragments of my thesis when I can’t seem to get any kind of handle on the narrative of my life?

 

VIII

Those living in chaos are least able to tell a story, because they lack any sense of a viable future. Life is reduced to a series of present-tense assaults. If a narrative involves temporal progression, chaos is anti-narrative.

The Wounded Storyteller (Frank 2013, xv)

For a while, I tried to instil my life with a sense of continuity by walking the same route through Hackney Downs Park. I thought this forced narrativisation of my day might help me write the PhD.

 

every weekend

                        I retrace my steps

attempt            a continuity of self

hoping something        will catch

(Hartshorn 2023, tbc)

 

I tried to pay attention to the changing seasons, the different plants and flowers that were in bloom, as a way of tracking time, of feeling that I was part of a shared timeline with friends and peers.

I am out of step with normative time. As well as illness necessitating a recurring return to childlike dependency, I have never been in what I consider to be a long-term normative relationship – with a sense of futurity. At aged 36, I am still renting with strangers (over 20 flats in 19 years), I don’t drive, and I am only earning minimum wage. I live a transitory life and crave stability, a foundation I can build upon.

There has been no clear linear trajectory to my life – I have zig-zagged back and forth, searching for a place to alight, looking for a place of reprieve and stability that has always eluded me.

I am moving simultaneously backwards and forwards. A flare up means an unravelling of my life, of everything I’ve built or worked towards. I try to keep up with my peers but I feel myself falling further and further behind.

Last spring, I collected the petals of small flowers and pressed them in an attempt to remember, an attempt to connect the past to the present moment.

 

the seasons                  I know

better than my body

                                crocus shoots

appearing above last year’s leaves

I know their future                  petals cupped

yellow of a blackbird’s beak

(Hartshorn 2023, tbc)

 

Blu-tacked to my bedroom wall, I have a lunar calendar, which helps keep me ‘in time’. Otherwise, my life feels like a series of dioramas, as viewed through a peephole, edges blurred.

These small gestures help to lift the all-encompassing stasis of illness, where weeks pass in a low-lying fug.

 

I wonder how I can introduce movement and hope, the possibility of futurity, without adhering to the progression of normative time?

In the past week or two my fatigue has been so debilitating that my writing has felt like slowly putting one foot in front of the other. The form of my poems has reflected this; I’ve been using a lot of forward slashes to indicate breaks in ideas/phrases/imagery. Is this grappling for footing just another way of establishing the linear? Of trying to assert direction amidst the chaos?

I wonder if it would be more accurate to overlay words on top of one another, as a kind of syntactical drowning?

(Hartshorn 2020, 32)

 

Although it remains unwritten, largely in part because my body will not let me write, I imagine my thesis to be a piece of work held together by recurring motifs, ideas, and patterns, rather than narrative momentum. Rather than a search for meaning or causality, I hope my thesis will enable the reader to physically experience a sense of what it might be like to inhabit a sick body. Arthur Frank writes that chaos stories are ‘told on the edge of a wound’ (Frank 2013, 98), and I would like to encourage a haptic reading, where the stickiness of illness in some way reaches beyond the text and towards the body of the reader.

 

About the author

Jane Hartshorn is a poet and PhD candidate at University of Kent, writing about the lived experience of chronic illness. Her pamphlets include In the Sick Hour (Takeaway Press, 2020) and Tract (Litmus Publishing, 2017).​ She has had poems published by Boudicca Press, Dostoyevsky Wannabe, Lucy Writers and SPAM and is an editor at Ache Press. Her website is janehartshorn.weebly.com and she can be found on Twitter @jeahartshorn

 

References

Frank, Arthur W. 2002. At the Will of the Body. New York: Houghton Mifflin.

Frank, Arthur W. 2013. The Wounded Storyteller. Chicago: The University of Chicago Press.

Hartshorn, Jane. 2023. ‘Sequences of the Body’. Moving Mountains: writing nature through illness and disability ed. by Louise Kenward. London: Footnote Press. (forthcoming)

Hartshorn, Jane and Kaiya Waerea. 2020. In the Sick Hour. London: Takeaway Press.

Lorde, Audre. 1996. ‘The Cancer Journals.’ The Audre Lorde Compendium. London: Harper Collins.

McCully, Molly Brown. 2021. Place I’ve Taken My Body. London: Faber & Faber.

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