Alex Henry is a PhD candidate at Leeds University, working on a crip and feminist disability studies analysis of undiagnosed chronic illness in 21st Century British women’s writing. In this two-part auto-theoretical piece, he explores the personal illness experiences underpinning his research ideas on crip space-time, feminist epistemology and illness narratology.
My thesis was written twenty years in the future. It is February 2002. I am eight years old, and I am ill. It will be another five and a half years until my school and social life begin to resemble something recognisable to others. My adolescence will be a recovery of sorts, permeated and ruptured by false starts, relapse, recurrence and slow re-emergence. I have little memory of the early weeks of high fever and the following overwhelming, visceral exhaustion that accompanied me from early ‘post-viral’ speculations into the long grey days of chronicity. I am told that I had a series of illnesses and several fleeting returns to school before the exhaustion took me. In my mind the beginning sits as one definite event, a hard line between health and chronicity that was never real but will return to haunt me in another time and place, in another unexpected time of slow decline, belated recognition and enforced isolation.
I was too ill to visit the doctor, perhaps too ill for a small village GP to want to visit me. My diagnosed status remains unclear to me even now – M.E. was the eventual consensus but complicated by lost and unrecoverable blood tests from those early weeks of (re)infection. ‘Myalgic Encephalomyelitis’ confounded almost all the adults in my life and didn’t provide me with the easiest of explanations for my absence in rare encounters with my peers. “It means I’m too tired to do anything most of the time,” I would say, looking down in half-apology and doubt to avoid the sceptical stares and suspicious questions. There is a feeling in the pit of your person – not your stomach exactly – some deep place in your guts that twists and seethes when you are confronted by a disbelief so unconcealed and forceful it transforms your every utterance into something incriminated by your own self-doubt. There is no cure for that feeling except time. There is no alternative except to begin to tentatively imagine yourself and the outside world differently. As much as my embodied fatigue, these feelings of doubt and shame shaped my young bodymind (Price 2015).
In many ways the naming of my condition did not matter, the advice stayed the same. My remaining childhood and adolescence had already been diagnosed: “Send him to bed,” the GP told my mother. “You might see some progress in a few years.” The arms were ripped from my clockface, and I lived outside of the regular rhythms and routines of everyday life, away from a hostile outside world, in a house that became my world. If time were to be my cure, it would have to be a different kind of time than the disciplining time of alarms and bells that sent my father to work and brother to school on time. I lived slowly and differently, awake and asleep, dozing and daydreaming in unruly patterns undetermined by clock-hands, daylight hours or social company. We began, together, my mother and I, to develop an intuitive illness-language which only we (I thought then) really understood. It was often figurative but always rooted in our experiences and growing knowledge, often seemingly non-sensical, incoherent, anti-logical. There was talk of brain fog and embodied weight (long before I knew the word for embodied), there was pacing as self-care and the fatigue of disrupted sleep I would describe as being too tired to sleep. These emergent phrases made sense because they were true.
Chronicity is space-time travel
Twenty years in the future, researching my PhD thesis, I discovered that I was not alone in reaching for these words. The outside world sped by in cars, in cloudscapes, in the signs of changing seasons. My body too changed and stretched; my mother used to say each time I got up I had sprouted another foot in height, uncles enquired if instead of bed I was sleeping with my feet planted in compost grow-bags. The space of the house and my bed became literally, physically, smaller. I oscillated between periods of utter exhaustion and anxious exertion, between the pacing that meant rest, and pacing like a caged animal. The space of the house was both a prison and refuge, balanced between these states slightly differently each day. The primary school to which I never fully returned was built in a U-shape; you started at one end aged five and exited the other aged eleven. This was not just a kind of time travel but a linear progress – from one school year to the next – measured through orientation to and movement through space. There is a line in my mind, drawn down the centre of that building, that means before and after, health and illness, familiar and strange, presence and absence. It is a space I only half remember because I was only ever half-there.
A decade later, as a different person, I read a novel by Ali Smith at university. I recognised what she was writing about immediately. In our class on Hotel World (2001), illness was mentioned once in two hours of lively discussion, and not by me. I felt private and protective of a widely read and critically celebrated book. I understood, intuitively, that illness was not a major literary concern for our seminar to dwell on: it was a plot device, a convenient setting for the staging of bigger (more important) interests like time and capitalism. I stayed quiet then, but a frustration and curiosity began to take hold. Why had I, my classmates and tutor collaborated to ignore the centre of the novel? What was it that had caused my silence: an ongoing internalised shame, a desire to forget, a kind of unthinking confidence in my return to normative health and relative able-bodiedness? Hotel World began my thesis without my knowing it; it underlies everything. It is more than a text in my thesis, it is a novel that changed, or perhaps reminded me, who I am and importantly opened my mind to thinking about chronicity beyond myself and the relatively privileged story of my childhood.
Imagining a Different Real World
In emotional, intellectual and material terms, my childhood was healthier and more stimulating and secure than most. I decided that I didn’t want (until very recently) to write directly about myself, that there was a more expansive literature to address than my own related experiences: childhood M.E. cannot speak for all medically contested forms of chronicity, like the chronic debilitation of gendered homelessness in Hotel World or the complex cultural negotiations of non-normative eating practices in Helen Oyeyemi’s White Is for Witching (2009). Women have shaped my life and who I am, as carers, teachers, friends and partners. My writing on women’s fiction is partly practical – the writing exists if you are willing to look for it – but it is also necessarily a recognition of why such writing exists in such starkly gendered terms. I was disbelieved and misunderstood by a community as a child. To be dismissed, pathologised, even hystericised, in adulthood by medical professionals and society at large, is an associated but different experience of stigmatisation and injustice. The sometimes-imaginary women my thesis focuses on cannot (even if they want to) retreat to the safe-space of bed, be understood and cared for unconditionally by their mothers, and wait-out the symptoms to re-join a ‘normal’ life trajectory with few material repercussions.
I turned to fiction in my isolation and, when I couldn’t read for myself, couldn’t physically hold a book open and move my eyes along the lines of text, my mother read to me. I turn back towards fiction now because in some ways it is what I most closely associate with illness-time and self-care. Fiction is often popularly conceived as an escape from ‘reality’, as an indulgence of clearly delineated fantasies by a reader who suspends the rational real-world for entertainment and enjoyment. For me, reading fiction was fundamental and formative to developing and sustaining myself; it engaged me in projects to imagine other worlds and ways of being and gave me the conceptual tools to begin to imagine a different life for myself, outside of school, away from normative social(ising) environments. If this sounds instrumental, I am not suggesting that this is the function of literature writ large, or that fiction taught me empathy or self-understanding, but that in imagining other times and places and lives, I was also imagining other possibilities for my own life.
As Ali Smith writes in Artful, “[h]ere’s to the place where reality and the imagination meet, whose exchange, whose dialogue, allows us not just to imagine an unreal different world but also a real different world – to match reality with possibili [sic]” (Smith 2012). Like Smith, I want to leave this sentence hanging, unfinished (Liebermann 2019). I am not interested in providing (or obtaining) closure: narrative, medical or otherwise. Like the gradual beginnings of becoming chronically ill, end points are elusive, fragmentary and often impossible. The imagining of ‘a real different world’ can itself be resistant to existing structures of enforced disclosure and is not confined to the terms of the normatively coherent, the rational, the chronological or the articulate. My ‘real different world’ was imagined and lived-in, in slow-motion, for years. It was a world without compulsory productivity, beyond deadlines and timetables, where outside assumptions about capacities and motivations did not apply. From time to time, I try to visit that world.
Liebermann, Yvonne. 2019. “The Return of the ‘Real’ in Ali Smith’s Artful (2012) and How to Be Both (2014).” European Journal of English Studies 23, no. 2: 136-151.
Price, Margaret. 2015. “The Bodymind Problem and the Possibilities of Pain.” Hypatia 30, no. 1: 268-284.
Smith, Ali. 2012. Artful. London: Penguin Press.
About the author
Alex Henry is a PhD Candidate in the School of English at the University of Leeds. Now nearing completion, his thesis is a crip and feminist disability studies analysis of undiagnosed chronic illness in 21st Century British women’s writing. A section of his thesis work on Ali Smith’s Hotel World and undiagnosed chronicity will be published in a forthcoming Special Issue of the Journal of Literary & Cultural Disability Studies titled ‘Chronic Illness and Representation’ in 2023. He is available for contact at firstname.lastname@example.org or on Twitter @thelifebed.