Char Heather
Talking about fragments and narrative and chronic illness.
Lydia says she is whole. It’s not been a fragmented experience, it’s been something else
an unwinding maybe?
Her self has not disintegrated.
Has mine?
I don’t know if I think of people as ‘whole’ or otherwise, it doesn’t chime a recognition. Fragmentation doesn’t hit me in the modernist or romantic sense. It is not a mosaic of shards who, grouted together, share a purpose of wholeness<<<
It’s January {frosted grass, golden light on millstone grit} and I’ve been writing this essay on and off for over six months. I live opposite an old red brick warehouse today there’s an intermittent banging that triggers my tinnitus.
I’ve a weird form of pulsatile tinnitus, where certain noises illicit a bubbling sensation inside my ear, like my eardrum is reverberating, resonating, with the sound. Triggers include my partner’s snoring and the coo of a wood pigeon, and now this sound: someone beating a large piece of sheet metal like a gong.
Chronic illness/fragmentation > adept at feigning a language of disruption, interruption, disintegration. Such beautiful bits!
Chronic illness/fragmentation is an experience {disrupting, interrupting, perhaps disintegrating} {pain, the swell of symptoms, temporal whirling, or the way the word makes feeling - small and bitty}
Disruption, interruption and disintegration sound distinctly post-modern. So, fragmentation to the modernists was this mosaic, and to the romantics too. The postmodernists weren’t interested in this idea of a whole, but more on what the fragment can do, characterised by the above.
>Crip fragmentation is not postmodern fragmentation<
I propose a discreet category of crip fragmentation, though it shares commonalities with a postmodern kind. Crip fragmentation is a method, a tool, that reckons (or rather, can reckon) with specifically crip senses of temporality, with making, with our start stop pause over here and back again.
It is October {wet churned up leaves, soil smells like anticipation} and I have been working on this essay for three months or so. I hold shards to the light. I see vibrating cells, mountains of pillows and blankets, to-do lists taller than I am, I see the frenetic wiggles of anxiety through intestines, I see myself, strange and crip and delightful.
‘There is a strand of theory that understands disability to be a creative force, a spur, a method of production. The mismatch between disabled bodyminds and built and social environments leads to particular crip ways of thinking, being, representing, and making.’ (Mills and Sanchez 1)
In fragments is there space for crip joy & crip negativity?
Fragments as a crip methodology << breaks as process << interruption as aesthetic << pause as praxis
>>Now
>>>>> Rest.
>>>I close the window to try and dampen the tinnitus-conjuring sound. Though it is crisp-aired January I’ve been opening the windows to try and get the cool fresh into the indoors. I don’t leave the house much, especially in the week, due to my chronic illness that manifests in what I will simply call fatigue, though that itself is an umbrella term for big and little mindbody experiences. Closing the window has helped to quell my simmering ear drum but the banging is a distraction nonetheless.
Trying to embrace my particular crip way of thinking, being, representing, and making but/but/but. I am inculcated and still worry about coherence. Both in narrative convention and in general. Do I need to make sense? Is there enough sense in a connection point. A resonance.
Fragment comes from the latin ‘frangere’, to break. I do not want to imply that the sick, crip or disabled are broken. Nor do I want to tell a sick reader that they have to feel whole. Feel what you feel, that’s your business. I am concerned here with break, breakage, as in breaks. A writing process full of breaks, of rest, of interruption, and bodyminded disruption.
>>tricky
Wasson writes about episodic reading as a potentially more useful approach to acknowledging chronic pain than riding for coherent narrative arc. Episodic writing, that too can capture something of the chronic pain experience, episodic is not necessarily fragmented but it certainly isn’t a far leap. Wasson writes too that ‘illness is often described in terms of narrative crisis, being locked in a present without a sense of a coherent narrative of past and imagined future’ (107). I think anyone with a truly coherent sense of past and imagined future seems anomalous to me, whether that’s down to my queer crip identifying bodymind or more general, I cannot know. Still, I argue, this fragmentary approach to narrative feels like a balm for such crises — crises that arrive, I would argue, from a strict sense that narrative must be something Aristotlein, that subscribes to arc, to resolution.
It’s August {soft, verdant, birdsong} and I’ve been writing this essay on and off for about two months. I am lucky enough to house-sit for a friend in Finland. Two and a half weeks alone with their beautiful things, their books, their sweet sweet home. For the first 6 days I read and read and read. I wake up and have a coffee and read a poem, then I take to the sofa to read about writing or disability and sometimes I write and do some admin and then in the evening I go to bed with fiction. I think about why I don’t follow this kind of structure at home. I think: I will follow this structure when I get home<<<<<
Balancing the embrace of a bodymind into methodology while allowing one’s self to admit that being ill can be shit. There is beauty in all of this and there are jagged shards that catch in my throat.
in the soft parts of today
fatigue<<< a faerie realm
From Tender Points, a lyric essay that examines experiences of chronic illness, trauma and patriarchal violence: ‘I agree that pain is something more complex and unknowable than a puzzle. And yet, when it comes to the mystery of my pain, I can’t resist the impulse to solve it. I have all these pieces, and I can’t stop my hands from wanting to jam them together until some sense emerges’ (Berkowitz 17).
These pieces, an analogue for fragments {theory, experience, lists, poetry, story} are organised in such a way that coherence, to my reading, is distinctly cripped. The text does not directly solve the puzzle, yet it holds these fragments together, pointing to links and breaks. There are connections and there are gaps. Though each reader can make of these connections what they will, to me they show the explicit links between Berkowitz’s chronic pain and the traumatic abuse they have experienced through both patriarchal violence and the medical establishment. And the link between patriarchal violence and the medical establishment is also held for the reader to potentially see.
The formation of fragments holds things in space, creating glinting patterns of reflections onto other fragments. This text in some ways becomes a series of mirror shards.
>>>>after the joy of submerging myself in a the water of a Finnish fjord. After having wandered Helsinki, drinking a single glass of wine alone and watched pedestrians, getting to grips with my friend’s rice cooker. After having been buoyed with an optimism for a new kind of life. One that is organised. Wholesome. I experience the vertiginous plummet. I barely have energy to do the silly Star Wars jigsaw I picked up at the second-hand shop, so big I have to do it on the floor on my hands and knees. I am slurped back into the sofa, watching soft and thoughtless content on Youtube. Watching other people being in community while I cradle the various pains in my body, forgetting all about this damn essay as I try to navigate how to order food for delivery in a language I don’t know.
I’m starting to wonder <<
>>if the majority of fragmented texts, particularly narratives, are simultaneously shaped as constellations, networks. There is always connective tissue. Fragments are linked through virtue of being in the same text but more often, there are natural thematic links, there are links the reader brings to the text, ghosts of causality. To me, that becomes a potent analogy for my, and I expect many other people’s, experience of chronic illness. Symptoms, moments, dreams, thoughts, the upswings and decline of mood or activity, have these spectral linkages. We superimpose connections as the readers of our lives and experiences, and others superimpose connections too, erroneous or not. It all becomes an increasingly complex mind map and so we, consciously or not, edit it down, picking out the connections, the inflamed connective tissues, that resonate most.
It’s early summer {bright, chill in the air} and I am sitting down to begin this essay but I am distracted, poking at a horseshoe bruise. A tangiblity of invisible illness. Look! How weak I can be. I fell through the back door. There’s a gold ball under my skin, all tender and galactic. I watch people moving in the factory opposite my house. So much goes on over there, so many different enterprises. Next to it the grasses of the watermeadow bathe in the sunshine. A developer owns the land and every year they threaten to build, to churn everything up with chaos and loud noises that would trigger my misophonia throughout the secular working day, compounding the dysregulation of my autonomic nervous system.
To see crip fragmentation as a space for crip joy, lapping resonantly at our toes, I look to Crip Negativity. Smilges discusses a space where ‘paranoia is relinquished in favor of a different kind of discomfort, not the certain discomfort of negatively charged critique but the uncertain discomfort of surprise and hope’. I see this stretching out fingers to lace with Sedgwick’s reparative reading. Smilges writes on crip feelings felt cripply, and I follow this line of thought to ask whether fragmented form can be a place where crip feelings felt cripply can be expressed cripply too? Surprise is conveyed in disruption, discomfort through narrative forms that eschew traditional notions of coherency and arc. Through this stop-and-start style we hold both crip negativity and crip joy in tandem. Resonances flow through the fragments and our selves like crip magic or intravenous rehydration.
It’s November {sad, wet} and I’ve been working on this essay for months. It’s been ages since I opened this doc. But I open it now. Scan-read my meanderings. I am too tired to expand upon my thinking.
>>I still believe in the power of the fragment.
‘Chronic illness is both writing and not writing. Thinking and not thinking. Being active and inactive’ (Chen 34).
What better way to show it on the page than a fragmentary form? Am I being too simplistic, I ask. And I know there are so many different ways to write, to approach writing. The ones that felt the most encouraged as I grew up in writing worlds felt unachievable, ableist. Even before I was quite this sick I was not someone who was going to be able to manage consistency, waking up at 5am every day to fit a couple of hours in before the working day.
In an essay on crip making, Hamriei tells us crip is ‘not a synonym for disability, nor is it simply a political orientation. Rather, it is a specific commitment to shifting material arrangements' (Hamraie 307).
>>fatigue cloaks limbs and flares out behind us, cape-cum-mountain range, the fabric of it stiffening into peaks and troughs. Somehow it is flowing yet calcified in its rigidity. It’s the snow that blankets the highest points, dampening sound, dulling sensation. The bright yellow sun of morning will melt nothing.
Using the fragment to inform our methodology is one such way to shift the material arrangements of our writing process away from conventional expectations
>>shard as part of a specific spacetime.
It is December {miserable} and the festive season is anything but. I do not open this
document. I don’t look out of the window. I curl up like a bud.
Fragmentation can bend ‘the clock to meet disabled bodies and minds’ (Kafer), if by clock I mean the temporal representation of any given text.
Fragmentation: a tool for crip time, in both its presentation of time and in its methodology. We are writing and not writing. We are resting. We are allowing space for thoughts and bodies to mulch.
>>>fragmentation as ‘crip time is time travel’ (Samuels)
January {crisp, hard earth, the air smells like anticipation} and I make mind up not to be new this month. I look at this essay. It is not new. It is a year of thinking, clumsily regurgitated. The world is quiet. Ground frozen. Sun, gleaming. There is space here, to think.
‘To put it another way, this is not just about multiplying alternative illness stories, but also making a space for story that does not fit the expected form of ‘story’ at all.’ (Lazard)
Works Cited
Berkowitz, Amy. Tender Points. Timeless Infinite Light, 2015.
Chen, Mel Y. 'Chronic Illness, Slowness, and the Time of Writing', Crip Authorship: Disability as Method, New York University Press, 2023, pp.33-37.
Hamraie, Aimie. ‘Crip Making’. Crip Authorship: Disability as Method, New York University Press, 2023, pp. 303-317.
Kafer, Alison. Queer, Feminist, Crip. Indiana University Press, 2013.
Lazard, Carolyn. ‘How To Be A Person In The Age Of Autoimmunity’, 2013. https://static1.squarespace.com/static/55c40d69e4b0a45eb985d566/t/58cebc9dc534a59fbdbf98c2/1489943709737/HowtobeaPersonintheAgeofAutoimmunity+%281%29.pdf. Accessed Date: 08/11/22.
Mills, Mara; Sanchez, Rebecca. 'Introduction: On Crip Authorship and Disability as Method', Crip Authorship: Disability as Method, New York University Press, 2023, pp1-18.
Samuels, Ellen. ‘Six Ways of Looking at Crip Time’, Disability Studies Quarterly, Vol. 37 No.3, 2017. https://dsq-sds.org/index.php/dsq/article/view/5824/4684. Accessed Date: 04/04/23.
Sedgwick, Eve Kosofsky. 'Paranoid Reading and Reparative Reading, or, you’re so paranoid, you probably think this essay is about you', Touching Feeling, Duke University Press, 2002, pp. 123-151.
Smilges, J. Logan. Crip Negativity. University of Minnesota Press, 2023. https://manifold.umn.edu/read/crip-negativity/section/45dbbde9-3ec3-4e95-9fac-59a110b9625a Accessed Date: 03/8/23.
Wasson, Sara. ‘Before narrative: episodic reading and representations of chronic pain’, Medical Humanities, vol.44, no.2, 2018, pp.106-112.
Notes
The conversation mentioned at the beginning of the piece was with Lydia Cattrell, who runs the ‘Connecting Conversations’ Substack, in a working group that meets to discuss narrative and chronic illness through the remote body.
Char Heather is a writer and researcher focussing on intersections of narrative form and queer/+crip experience. Their fiction and non-fiction can be found most recently in The Polyphony, Lassitude Zine and Sink Magazine. They run the remote body, a platform for online events that centre chronically ill and disabled folk and newsletter of crip writing. They are at @charheatherr or @theremotebody on Instagram.