A Series of Disparate Discomforts: Practice Research with Chronic Illness

Jane Hartshorn, who started a practice-based PhD in poetry in 2018, reflects on the tension between leaning into the chaos of chronic illness and attempting to accurately reflect it.

In writing about my lived experience of chronic illness, it was important to me to resist the impulse to place any kind of narrative logic upon an experience that has been disordered, incoherent, and non-linear. Arthur Frank writes that, ‘in life as in story, one event is expected to lead to another’ (Frank 2013, 97), however chronic illness lacks this kind of sequentiality. Time becomes fluid, cyclical, alternating between recurrence and remission. Pain, discomfort, and fluctuating symptoms mean living in a permanent present-tense. The past does not make sense in the context of the present; illness is experienced as a rupture in the trajectory of one’s life. With no chance of recovery, only management, the future cannot be counted upon, remains permanently out of reach.

Within my research and writing, I struggle with how to reconcile the tension between leaning into the chaos and attempting to accurately reflect it, alongside the urge to make sense of my experiences and find meaning in a situation that threatens to obliterate my sense of self and untether me from the world.

The following two-part essay, which includes extracts from my diary entries and poems, explores the difficulty of writing about the body whilst being at the mercy of the body and the challenge of describing an experience without the advantage of objective distance or reflection.

 

I.

People telling illness stories do not simply describe their sick bodies; their bodies give their stories their particular shape and direction.

The Wounded Storyteller (Frank 2013, 27)

I originally planned to write something that embraced the abject nature of illness, a piece of work that spilled over margins, that saturated the pages with its viscosity.

I wanted the form of the thesis to embody the experience of living in a chronically sick, non-normative body. Like a ragged breath, I wanted my body to infiltrate the text. I wanted the reader to be aware that a body, my body, had  given shape to the ideas and concepts explored.

 

19/01/21: Thinking more about the shape of the PhD. Think the idea of the abject, of fragmentation, can run throughout and be the connective tissue that links the chapters.

 

Yet, since beginning the PhD, I have found it increasingly difficult to embrace my abject nature. I struggle with my body’s lack of a centre. My body feels like this shapeless, spilling thing that I am constantly trying to keep upright in the semblance of a human shape.

The urge to flop and fold.

 

the difficulty

of straightening my spine                    

its desire

to slide            

vertebrae scattering like chips of scree

across the carpet  

(Hartshorn 2023)

 

This awful drag of flesh.

Reading and writing with and about illness means I am constantly attuned to the erratic nature of my body, a body that is difficult to inhabit. To keep myself within this body, to pay attention to it and attempt to articulate it, only magnifies my feelings of discomfort.

 

06/02/23: It is frightening to be in my body. Very different from this encouraging of the abject which I like to write about – maybe I’ve got myself all wrong.

 

I occupy a strange in-between place whereby I ricochet from dissociating from my body as a coping device to being plunged firmly, and inescapably inside it. 

 

A colour photograph of an old stone wall with a patch of green ivy growing on it and the shadow of a person overlaying it
Image courtesy of author

II.

[In health] [t]he body is largely transparent, simply who we are in action. But in illness the body surfaces as strangely other. It asserts an autonomous life, refusing to obey our commands.

The Distressed Body (Leder 2016, 16)

I am trying to write about a body I have been instinctively dissociating from since my diagnosis in 2001.

To intentionally occupy my body is difficult. It is like lying in the constricted space of a bath, suddenly confronted with my nakedness, the discomfort of elbows and knees on enamel.

With the emergence of symptoms aged 13, my body transitioned from being the transparent vehicle through which I experienced the world, to a tormentor that intercepted every thought and action.

Virginia Woolf writes that ‘all day, all night the body intervenes’ (Woolf 1926, 32) and as living in this heightened state of bodily awareness was exhausting, impossible to maintain, I began to dissociate.

I understood my body as diseased, defective, and perceived it as an autonomous agent that was working against me. I unhooked myself from my body as though simply stepping out of a garment.

 

fold from navel to thigh
                                    bluish curve of serous membrane

waist-deep in old shape
                                    hem pleating around ankles

(Hartshorn 2021, 83)

 

A body is just a set of organs and bodily functions, I thought, I can be a mind without a body.

This refusal to identify with the body that I believed had betrayed me led to numerous difficulties as I moved from adolescence to adulthood. I used to (and still do) avoid or feel nervous about participating in activities that necessitated a connection with my body – trying on clothes in shop changing rooms, exercise, physical intimacy.

I still defer household tasks like changing my bed sheets or hoovering for as long as I can. These activities sap me of strength, are uncomfortable, physically painful, and engaging in them places me in the restricted space of my body, a place I cannot tolerate for a sustained period of time.

 

28/04/20: One of the things that has made the last 40-odd days especially difficult is the inability to escape my body. My stomach is bloated, my back hurts pretty much constantly, but especially when I do any kind of physical task. My bra presses into the swell of my abdomen, and there is a tight feeling between my ribs. I undo my bra to relieve the pressure and end up carrying my breasts around the house with me. 

 

I don’t experience my body as a cohesive entity, but as a series of disparate discomforts. I am stuck in those places, unable to think or write beyond them.

 

III.

In the examining room, the person with illness becomes the white space in the picture, the absence which allows the illness to be seen.

Lost Bodies (Tanner 2006, 21)

My ongoing identity as a patient has also contributed to my tendency to dissociate. During examinations and procedures, I experience myself transition from an embodied subject to a body-object.

Just this week, I had an MRI scan which reminded me of the slow immobilisation of self under the medical gaze. A kind of pliability came over me, an obedience which suspended any kind of independent thought or emotion. I let the clinician move my limbs for me, didn’t complain when the gown ruched up over my bare legs, ignored the draught.

As I lay in the tight space of the MRI machine, my limbs strapped to my sides, my head in a kind of brace and restricted by headphones, I listened as a computer-generated voice instructed me to ‘breathe in and hold [my] breath’. Hovering somewhere above me, the voice then directed me to ‘resume breathing’.

The first few times I had to do this, I felt like my chest was going to burst, but as the examination progressed, I found myself automatically, almost involuntarily, holding my breath, with little awareness of how my body was experiencing the deprivation of oxygen.

Although I had pins and needles in my hand from lying in the same position for so long, I didn’t dare wiggle my fingers for fear of disrupting the scan.

Our bodies are how we experience the world and although it can be a means of self-preservation, dissociation also means denying oneself the various pleasures and sensations that occupying a body involves.

This is something I’ve grappled with since I was a teenager; I find it too easy to withdraw from the world.

 

Taking pictures keeps me engaged; it’s a conversation of sorts. It’s also an attempt to leave a trail of association, a ripple of images that link together the dead space and undifferentiated time of the past year. Similar shapes recur throughout the photos: jellyfish, a clump of moss, a broken eggshell, a spider sac, a pink nautilus shell.

Or, a wishbone found on the beach, the spidery veins of fallen leaves, a V-shaped flight formation, ivy forking a wall, branches intertwining, an antler-shaped broken root.

(from ‘Partitions’, unpublished)

 

I find my body in other things.

 

IV.

Small tasks like carrying groceries home or lifting a child require preparation, pauses, rest, and cause fatigue. Everything is hard. Everything is far. Everything is strenuous. My world, and the world of those who are close to me, has shrunk.

Phenomenology of Illness (Carel 2016, 71)

Fatigue is another kind of withdrawal from the world, one that severely impacts my life on a day-to-day basis.

Attempting to write a thesis whilst experiencing chronic fatigue has been extremely challenging. I only have a few hours a day when I am cognitive enough to concentrate.

 

fatigue settling / red-tailed / like a bee

(Hartshorn 2020, 22)

 

This puts a lot of pressure on those first few hours. I wake and I am nervous about expending my precious reserve of energy before I get to my desk.

 

a morning spent indoors          and

my shoulders are falling

I loll petal-headed onto a spill of sheets

the green furrow of my duvet ploughing

                                                           my limbs slack

(Hartshorn 2023)

 

I work in a studio space within walking distance of my house and because I try to minimise the time between getting up and reaching the studio as much as possible, I often arrive at my desk without having had breakfast.

My whole day centres around those two to three hours in the morning when I am most alert and capable. The rest of the day feels brittle, dead waste collecting like sticks around a couple of hours of clarity.

I have made my life very small.

 

18/02/20: Sometimes when I get this tired and I’m out in the world, I start to panic. Today, I walked 5mins along the road from Hackney Library to pick up my prescriptions, then another 5mins along the road to Tesco to get cleaning products. It floored me. Everything becomes an effort.

 

I feel as though I am tiptoeing around myself, afraid of disrupting the delicate balance of energy. I prioritise between tasks because I know that whatever I choose will probably be the only thing I do that day.

I try to extend the measure of energy I have as far as possible into the day. To be hyper-vigilant like this, to be constantly assessing how much energy is left, is exhausting in itself.

Eating is always followed by a slump, another leakage of energy. I eat and I am submerged in folds of tiredness.

 

petal heads / flopping forward / skin like crepe paper / lids heavy with / violet capillaries / translucent eyed / in sunlight

(Hartshorn 2020, 22)

 

I live in a state of constant deferral. ‘I’ll do it tomorrow’ is the refrain that shapes my days. If I am (dys)functioning in the haze of fatigue, I don’t want to phone the doctor, or attend an appointment, or meet a friend for coffee.

This bodily uncertainty permeates everything I do, makes it difficult to take decisive action, has resulted in a reticence that has become part of my personality.

 

This article is part of a series exploring practice research in the critical medical humanities. Read Part two.

 

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

Carel, Havi. 2016. Phenomenology of Illness. Oxford: Oxford University Press.

Frank, Arthur W. 2013. The Wounded Storyteller. Chicago: 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. 2021. ‘Arrival’. Exclamat!on Journal Vol 5: Monsters, Monstrosities, and the (In)Humanities. Exeter: University of Exeter. 83.

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

Leder, Drew. 2016. The Distressed Body: Rethinking Illness, Imprisonment, and Healing. Chicago: University of Chicago Press.

Tanner, Laura E. 2006. Lost Bodies: Inhabiting the Borders of Life and Death. Ithaca, NY: Cornell University Press.

Woolf, Virginia. 1926. ‘On Being Ill’. The New Criterion. A Quarterly Review. Vol. IV., no. 1: 32-45.

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