1Nasim Marie Jafry’s The State of Me (2008) is a semi-fictional reimagining of the author’s own life, through protagonist, Helen, of living with myalgic encephalomyelitis (ME) in late-twentieth-century Scotland. The novel is a fictional pathography, which depicts how overwhelming it feels to live with illness in the present, as well as how the prospect of becoming, and remaining, unwell, leeches into the lived past and potential future(s). ME impacts on Helen’s abilities in the present, forcing her to halt her studies at university and all other activities expected from a young, intelligent, and sociable person; this in turn derails the personal and professional life she had expected to lead in the future. Subsequently, Helen questions how connected she feels to her previous years of health, during which she did not anticipate this debilitating illness experience. As summarised by Brian Hurwitz, “the temporal perspective is key to the manner in which the illness narrative is organised. Time is the axis around which biological goings on revolve (and evolve), and against which mental, emotional, and interpretative processes are placed” (2004, p. 423). The physiological reactions in the body caused by disease, and the emotional ways Helen responds to being ill, impacts on her experiences of time and thus the ways in which she narrativizes her experiences. This article focuses on the ways in which the experience of having ME impacts on Helen’s perception of her present, how she reflects on her pre-illness past, and how she considers her future.
2ME is a chronic illness, and its persistence, as well as its varying intensity of symptoms, is what changes Helen’s relationship with various temporalities. The term chronic can be understood in two ways, as argued by Drew Leder: “[t]o suffer from a ‘chronic’ pain or illness (from the Greek khronos, meaning ‘time’) is not only to say this condition lasts a long time, the conventional way of understanding ‘chronicity’, but that such conditions disrupt our experience of time itself” (2021, p. 100). For Helen, the disruption ME has caused to her expected life trajectory means that the way she considers measures of time in relation to her own life has changed. Before illness, she was able to think about long time periods, including taking on a four-year degree, and completing a whole year of study abroad, but since illness, she is only able to consider life in the present, often in increments of mere minutes, as that is all she has the strength, mentally and physically, to manage. In the early stages of her illness experience, she states that “I decided to go downstairs for ten minutes. I wanted to make the most of having visitors. I got up and put [her boyfriend] Ivan’s polo neck on over my pyjamas” (Jafry, 2008, p. 63). Small units of time are easier for Helen to manage because they allow her to take into account how fatigued her body and mind feels in the immediate present, and whether or not she has the capacity to expend the energy required to spend time with other people. Ten minutes is “making the most of having visitors” because it is the longest amount of time she feels able to appear as though she is coping with her illness, whilst in company. This quotation also demonstrates the ways in which illness has added layers to Helen’s identity, through her choice of attire. Her pyjamas signify illness as they connote spending time in bed, the place to which Helen is confined for most of her days, whereas Ivan’s polo neck signifies her status as a girlfriend. It is significant that she layers the polo neck on top of her pyjamas, as she physically places the identity she prefers over the one she dislikes, on show to her visitors. Helen wants to be seen as someone able to participate in a romantic relationship, rather than as an invalid who spends most of her time alone.
3Not only is Helen’s personal identity altered by illness, so too does she encounter a change in her status with the state. The moment at which Helen’s chronic illness is considered as more of a disability than an illness, and how this label impacts on her categorisation regarding her ability to work, demonstrates preconceived, ableist attitudes, linked to neoliberal disability politics:
One day, without warning, a pension book arrived for me in the post. […] Inside page: SEVERE DISABLEMENT ALLOWANCE. […] But I’m not disabled! […] I’m exhausted and dizzy and weak and my life’s ruined, but I’m not disabled! […] I’m severely debilitated, I said, not severely disabled. I was mortified. (Jafry, 2008, pp. 111–2)
4As one definition of “mortified” is embarrassed, Helen’s reaction to the pension book suggests that she feels ashamed to be labelled as disabled. However, as the roots of the word “mortify” mean “[t]o deprive of life; to kill, put to death” (OED, n.p.), Helen’s feelings of mortification suggest that she is not just humiliated, but that she feels she has been killed by the reception of the pension book. Although she is still alive in body, this death is one of social status: her identity as a non-disabled person has been killed. Her proclamation that the book arrived “without warning” conveys her shock at her change of status with the state and implies that this change to her identity feels sudden. This statement also suggests, however, that there could conceivably have been warnings that Helen either did not see or chose to ignore. Considering that she had to drop out of university, and she admits to previously “sending in six-monthly sick notes and filling in forms with humiliating questions” (Jafry, 2008, p. 111) to receive a sickness benefit, Helen was already aware that she was deemed by the government as a person unable to work. Thus, as her identity with the state has not actually changed by much, it is the scope of this new label, and the way in which it was communicated, which has caused her upset. “Disabled” denotes that Helen has limited functions, abilities, or senses, whereas “debilitated” is less severe, as it denotes that she is weakened and infirm. If Helen is considered to be debilitated, it is implied that she could recover her strength, whereas considering her as disabled connotes that there are functions which she cannot perform and may never be able to do so. Instead of filling in forms on her own time, giving answers which reflect how she, subjectively, feels, the pension book is an edict sent to her as tangible proof of the objective, bureaucratic categorisation of her person: she has been clearly and officially labelled for long-term unemployability. She no longer has to prove herself on a six-monthly basis to be unfit to work, but conversely, it also means that she no longer has the chance to identify as someone who could be well enough to work in the future.
5Alison Kafer notes that “[t]he medical field in particular has a long tradition of describing disability in reference to time”, referencing the use of such terms as “chronic”, “intermittent”, and “relapse” to describe the duration and time frames of illness and disability (2013, p. 25). In light of these temporal categories “commonly used in formulations of disability”, Kafer argues that “one aspect of cripping time might simply be to map the extent to which we conceptualize disability in temporal terms” (ibid.). Both “disabled” and “debilitated” are used to conceptualise Helen’s illness in temporal terms, but Helen’s reaction to being categorised as “disabled” demonstrates her preference for being considered as temporarily experiencing debilitated health, rather than having the label “disabled” as a fixed part of her identity. It is significant, too, that this pension is for disability, rather than old age, as is most usual in the current use of the term. Helen’s receipt of a pension feels as though it is misplaced in time, according to her pre-illness expectations for her life, as she is receiving it in the present, in her twenties, rather than in the future after a lifetime of employment.
6Arianna Introna draws on Autonomist Marxism in her readings of Scottish literature to demonstrate the social critique present in depictions of welfare and work in disability narratives. She argues that “standardised work processes calculated to exploit the ideal(ised) able-bodied worker on which capitalism relies” cannot be applied to non-normative bodies and minds, hence why people with disabilities are excluded from the sphere of employment because they do not offer it enough value (Introna, 2022, p. 1). Being eligible for a pension on account of disability is recognition that Helen is not eligible for paid employment, definitively excluding her from the world of work because, to the capitalist system, her “debilitated” person is non-productive and therefore offers no value. Her ineligibility to operate under the standardised expectations for workers places Helen in a position of increased economic precarity. This can be considered as part of what Introna names “crip precarities”, a term which “encapsulates the ways in which disability intensifies the condition of precarity experienced by non-productive bodies as soon as these encounter the commodifying logic of capitalism” (ibid., p. 190). As disability prevents a person from being considered as productive, it excludes them from fulfilling economic functions demanded by capitalism. Even though Helen was not employed before being diagnosed with ME, as a student, she was viewed by others and by herself as a potential future worker. The arrival of the pension book means that Helen is no longer identified as having future economic potential and is instead viewed as someone who will occupy a status of non‑employment for the foreseeable future. Helen’s repetition of “I’m not disabled” demonstrates that she does not feel this status fairly reflects the identity she is supposed to and wants to have, as a young, previously healthy person.
7The desire displayed by Helen to be seen as fit to work is depicted throughout modern and contemporary Scottish literature, where health and viability is often measured through external judgement of a person’s physical and mental abilities rendering them capable, or not, of being productive. For example, Ali Smith’s Hotel World (2001) explores the impact of employment, or lack thereof, on a person’s mental and physical well‑being, through different female protagonists all connected to The Global Hotel. From chambermaid Sara who died in a workplace accident, to homeless woman Else whose financial situation and consequential standard of living is entirely dependent on what strangers believe she deserves, to receptionist Lise who is off work on account of an unnamed, exhausting illness, the protagonists are all bodies which are or become non-productive because they cannot function as capitalism demands they should. In Michel Faber’s Under the Skin (2000), Isserly has been subjected to surgical mutilation so that her body is suitable for her occupation. This body causes her constant physical agony and mental anguish, but she often keeps those feelings concealed out of fear that she will be viewed by others as non-productive. This depiction of being entrapped by labour contrasts with the portrayal of Bella Baxter in Alasdair Gray’s Poor Things (1992). Bella, who has an unusual relationship with temporality as she has a woman’s body but an infant’s brain, finds that as her mind develops and her ideologies mature, she wants to work in order to contribute to society and gain social and financial independence. Introna recognises that “Bella’s pursuit of equaliberty is conditional upon the overcoming of her underdevelopment, which is indexed through her success in the world of work” (2022, p. 63) and argues that “[t]he ideal of independence she embraces fits an ideology ‘which stresses competitive individualism’ under capitalism” (ibid.). Bella’s independence can only be achieved when she is seen as fit for employment, and this is the kind of capitalist independence to which Helen aspires but is denied access through her categorisation as “disabled”.
8Throughout the novel, the way that Helen sees herself, and the various ways she is viewed and treated by others, demonstrates how significant an impact ME has on her identity. From the beginning of the novel, Helen compares her present to her past because it confirms to her how much illness has altered her life. She states early in the novel that “I haven’t always been ill. Once upon a time, I got lots of ‘A’s and played right-inner for the school hockey team” (Jafry, 2008, p. 10). Use of the fairy tale phrase, “once upon a time” is employed here as a way of framing Helen’s past for the way in which it denotes a story of a long ago or fictional past, due to it being so far from her circumstances in the present. Helen cannot understand how someone who was once so capable has become so debilitated, hence why she dismisses her own history as if it was as wildly unlikely as a fairy tale. Additionally, the use of fairy tale tropes also alludes to the formula Helen expected her life to follow. Just as “once upon a time” is often followed, ultimately, with “happily ever after”, so too did Helen anticipate herself following the conventional life trajectory expected for an intelligent and athletic young woman, when it is bookended by these phrases. This is emphasised throughout the novel by Helen describing her desires for her life through the invocation of particular tales which, in contemporary versions at least, end in the heroine’s success. When in France on her year abroad, Helen “lay in the bath, scrunching up [her] eyes, wishing that when [she] unscrunched them [she] could be home with Rita and Nab — like Dorothy clicking her magic slippers” (Jafry, 2008, p. 27); later, when too ill to attend the Daft Friday Ball at university, she imagined that “[her] fairy godmother whispered, You shall go to the ball, while the ugly sisters stuck the boot in, Sick people don’t go to balls, you’re going nowhere!” (ibid., p. 36); she also fantasises about committing suicide through a paracetamol overdose, but upon recognising that she would likely be saved anyway, she decides that it would be preferable to “be in a deep sleep and wake up when Ivan kisses [her]” (ibid., p. 174), much like Sleeping Beauty. Each fairy tale scenario in which Helen envisages herself ends with the heroine being saved through a miraculous narrative device. This implies that Helen hopes that she too will be rescued from her illness in order to achieve her own happy ending, but that she feels it would take something akin to a miracle for this to happen.
9Helen often adopts alternate perspectives from which to view her own life, sometimes because she feels disconnected from her current reality, and at other times because she wishes that the reality she is experiencing was not hers. To do so, she employs the motif of three different windows: “round”, “square” and “arched”. Windows are an invisible barrier to the world beyond, which can be both protective and isolating, and through her three windows, Helen depicts feelings of both. She uses the windows to distance herself from her life, by invoking the idea that the difficulties she faces are only pretend. She states that, “[i]f you look at yourself through a window, it’s not really you it’s happening to, it’s like watching yourself in a play” (Jafry, 2008, p. 59). This can be considered as the text making a metatextual gesture to itself, particularly as the novel is semi-fictional. Helen considering herself as though she exists in a play allows her to narrate her reality more easily, as she views herself as though she is only acting. At the same time, she uses the windows to identify times in her life during which her illness isolated her from engaging with her peers, her family, and the ways in which her experiences as a patient are isolated and ignored within the medical narrative.
10Helen’s desire to consider her life as though it were pretend is emphasised by the fact that the three window types are the same shapes used in BBC’s children’s television programme, Play School (1964–1988), which was designed to encourage its young viewers to use their imaginations. In her article on the history of Play School, Su Holmes gives an overview of the programme’s creators’ intentions for it to be informative and entertaining (2016, p. 33). Thus, Helen’s borrowing of Play School’s window motifs and rhetoric—through the ways in which she directly addresses the reader, to implore them to look in a certain direction—is to both inform her reader about how it feels to live with ME, and to entertain herself, by using these particular constructs to creatively report on her daily life. However, as aforementioned, Helen purposefully uses the windows to watch herself in this imaginary play, thus the reader that she is addressing, who might more appropriately be called a viewer in this instance, is really herself. By reimagining her life as though she exists outside of her reality and making the choice to tune in to watch her own version of Play School, Helen feels less trapped by her lonely existence as an invalid. Her intentions are clarified by real critical opinions of Play School: Holmes notes that “one critic described the aim of the programme as, ‘quite simply, to provide some stimulation for housebound children who are forced, through lack of nursery schools and playgroups, to spend all day with mums’” (ibid., p. 37). Similarly, Helen is housebound by illness, and therefore lacks opportunities most days to socialise with anybody from outside of her immediate family, but she creates her own stimulation by using her imagination. Both Helen’s version and the real version of Play School are intended for audiences in particular social circumstances, and it is interesting that Helen, as both creator and audience, here, considers herself in the same way in which the creators of the television programme considered their audience of children: Helen recognises the need for the social interactions she is missing, and so implements a framework in which socialisation becomes possible. As socialisation outwith the immediate family is deemed important for both audiences, and as these audiences are either children or an infantilised adult, it is implied that lack of external socialisation will hinder their progression through life-stage development. Helen’s use of this framework is evidence of illness causing regression in the development of her life. In her illness-related isolation, she returns to a structure provided by a television programme she would have watched as a child because she is unable to join in with adult life as she desires, and thus returns to a childhood state of mind in which it is appropriate, and encouraged, to make a game out of imagining alternate versions of reality. Helen’s choice to use a framework designed for children suggests that she is mocking as well as protecting herself through this device, for the ways in which illness has caused her to regress into a childlike state.
11The window type selected for use in each episode of playschool was not random but designed to give the viewer a sense of the theme of the individual episode. Hence, Helen’s choice of window for particular scenes is to convey thematic differences in each usage, although the differences are subtle, rather than obvious. This is due to Helen’s entire life being dominated by ME, and thus so are each of the window variations. The “round” window is used most often, and this window is reserved for scenes in which Helen feels stuck, both spatially and temporally, due to the ways in which ME prevents her from engaging in life as she had expected. This is particularly evident in the use of the round window to depict the differences between Helen and her peers, as they return to university for the first day of term, following their year abroad: “[t]he Junior Honours students are waiting for the Head of Modern Languages to address them. They’ve all done their year abroad. They’re grown up now. But where’s Helen?! We can’t see Helen! That’s because she’s at home in bed” (Jafry, 2008, pp. 74–5). Spatially, Helen is confined to her home where she is not well enough to leave her bed; temporally, the other students have “grown up” by gaining life experience, whilst Helen is too unwell to progress through life, both as a student, and in general. This is an example of what Martin Wyllie and Thomas Fuchs call “desynchronization”, described by Leder as, “[w]hile fellows pursue their work and social life, organized by long-range goals and the rhythms of a busy day, the ill person is sidelined from them, as well as his/her own previous self” (2021, p. 102). Helen’s life has lost its rhythm to illness, leaving her in a state of perpetual stasis, and this is what makes both her past self, and the lives of her peers, feel at such a distance. This desynchronization occurs because, in Fuchs’s terms, illness has caused Helen’s experience of temporality to become “explicit” (2005, p. 196). This form of temporality occurs when the body, often through illness, becomes “an object or obstacle”, which causes a person to “notice the slowing down of time and [they] may even feel excluded from the movement of life” (ibid.). In contrast, her peers are experiencing “implicit temporality”, as they are still “engaged in tasks”, allowing them to exist “inside time” and therefore not register its passing (ibid.). Helen’s debilitation caused by ME makes her unable to participate in the world of her peers, the same world that she once occupied, and thus she feels as though her time has come to a halt, whilst that of her peers continues to progress without her.
12The square window is used for scenes in which ME prevents Helen from engaging with those around her, depicting her as a background character in their lives, rather than as the main protagonist in her own. This occurs one New Year’s Eve, during which “Looby Loo’s gone back in her basket! She’s had a metallic headache since Boxing Day. […] Sean and Nellie are downstairs, glued to each other, wearing the Benetton sweaters they gave each other for Christmas” (Jafry, 2008, p. 187). “[M]etallic” is not a known type of headache, nor is it a term commonly associated with ME, therefore this description indicates that through personal experience, Helen has developed her own complex and idiosyncratic terms of symptom explanation. It is implied that Helen’s “metallic headache” has confined her to her bed for the entire festive period, “upstairs” and away from the other people in her home, who are able to enjoy each other’s company. Helen is not only physically distanced from Nellie and Sean, but also from Ivan, whose absence from the narrative suggests that he is spending Hogmanay with other people who are healthy enough to celebrate, instead of with his significant other, Helen. Her confinement to the background is further emphasised by referring to herself as “Looby Loo”. Looby Loo is a rag doll, a character from another BBC children’s programme, Andy Pandy (1950–1970). The nickname, Looby Loo, is given to Helen by Ivan, because she is as limp as a rag doll, on account of her ME. He calls her this affectionately, but it has connotations of her being the sidekick to the titular role of “Andy”. Just as Looby Loo is not mentioned in Andy’s title, so too does Helen not feature in Ivan’s plans, and yet, she refers to herself with the name he gave her, rather than her real name. This nickname bears much significance, as Looby Loo is a toy who, in the words of the programme’s narrator, “goes back in her basket” after being played with, just as Helen is often put away, or puts herself away, to wait for Ivan to come back into her life and spend time with her when he feels it is suitable. Calling herself by this nickname shows how Helen defines herself in relation to Ivan, whilst again demonstrating her desire to pretend that she is only playing a character, that what she is going through is not actually happening to her.
13Finally, the arched window is used to frame scenes in which Helen lacks autonomy. This is demonstrated during a muscle biopsy conducted by a medical student and observed by a surgeon, through which Helen is objectified:
Elegant legs, said the surgeon. You’ll just feel a little prick and then some pressure. […] well done, Andrew, you’ve just done your first muscle biopsy! the surgeon announced triumphantly. (Yes, well done, Andrew! A fanfare of trumpets for Andrew, please! I don’t really mind that you used me as a guinea pig.) (Jafry, 2008, pp. 73–4)
14Helen is reduced to her legs, particularly, her leg muscles, in this instance. Their interaction exemplifies what Richard Baron argues is the subtraction of the patient from the “medical paradigm”, quoted by Anne Hunsaker Hawkins to mean, “‘[t]he disease manifests itself through the patient, and the patient comes to function as a kind of translucent screen on which the disease is projected’” (1999, p. 12). Thus, in this moment, in hospital, Helen is only seen for the ways in which ME is manifested in her leg muscles. Although the surgeon does speak to her, he only comments on her body and then informs her of what her body will feel. This is not the same as considering her as a person with feelings. Helen’s objectification is also sexual: the surgeon observes the “elega[nce]” of her legs, implying that he finds them attractive, and his warning about the “little prick” has phallic connotations. This can be linked back to Helen’s assertion at the time of her diagnosis, that she is “fucked” by ME (Jafry, 2008, p. 76). Use of the expletive “fucked” suggests that her life from then on will be one in which she lacks agency, as she is ruined by illness, outwith her control. Her lack of agency is evident during this encounter with the surgeon and the student, whilst also solidifying her objectification within the medical encounter as gendered. ME and the doctors it brings into Helen’s life are powerful, masculine entities to whom she has no choice but to submit, as the feminine, illness-weakened patient. However, committing her own thoughts to narrative, as shown by her satirical mimicking of the surgeon’s praise for student, Andrew, allows Helen to reclaim her voice within the clinical encounter, even if her comments are not said aloud to the medical professionals. The use of the window motifs allow Helen to not only reclaim her voice within the medical sphere but also to regain a sense of control of her life, as they allow her to reconfigure how she is viewed, or, at least, how she views herself. As argued by Arthur W. Frank, choosing the ways in which your illness is turned “into story is a kind of meta-control” (1995, p. 32). Helen implements such narrative constructs to feel a fraction of control over the ways in which her life story is told, even if she cannot control the content.
15As well as coming to view her past as though it were as fictional or fantastic as a fairy tale, so too does Helen come to consider some of the hopes she had had for her future before having ME, as fantasy. Helen admits that, when she visits the university careers office, “I feel in awe of all the opportunities, looking through the toyshop window at treasures I can never have: glittering jobs, glamorous placements, exotic Master’s degrees. I always check, but there are no jobs for four hours a week” (Jafry, 2008, p. 295). The subject of this statement and the language used relates to Helen’s experiences throughout the novel. On account of having ME, she is aware that she would not be able to work full-time, and in the eyes of the state, she is considered unfit for working at all. Yet, Helen still desires a commodifiable future, as demonstrated not only by the ways in which she idolises working, as shown by the descriptors “treasures”, “glittering”, and “glamorous”, the first two of which have monetary connotations, but also by the fact that she alludes to these jobs as toys, which are goods, sold for profit and bought for pleasure. She hopes that one day she will be able participate in the economic sphere as a productive body. Realistically, however, Helen’s feeling that these opportunities are beyond the “toyshop window” demonstrates that there is a barrier—ME—between her and what she would like to do with her life, and referring to these possible goals as “toys”, also implies that she can only play with the idea of obtaining such opportunities. Equating her career aspirations to “toys” again demonstrates how the chronology of Helen’s life has been disrupted through illness, as she uses elements from childhood to discuss her future. The image of the “toyshop” suggests that whilst Helen now considers these hopes to be childish fantasies, during the time in her life in which she did not have ME, when she was a child, these were then attainable dreams for her future.
16This attitude is not sustained by the novel’s end, however. Helen eventually learns to adjust her expectations for the future and does become employed in a job she enjoys, and is good at, and at the same time, she rekindles her relationship with Ivan. Helen works “one afternoon a week for an organisation that helps people with dementia”, where her boss is “impressed by [her] volunteering history and twelve years of ME. You’ll be able to fully empathise, she said” (Jafry, 2008, p. 462). Thus, Helen’s future becomes one in which her illness is helpful, rather than hindering. She states that, “[m]y week revolves around being well enough for Thursdays, I go in from one ‘til five. I am fit for nothing afterwards. Thank God for Ivan. He is my shining knight” (ibid., p. 471). Both the job and the relationship are proof that Helen’s life with illness becomes one which somewhat resembles the kind of future she had always hoped for, although it has been reshaped. She must structure her time carefully in order to be fit to work, much like her relationship with Ivan is also predicated by illness: he is her “shining knight” because he looks after her when she becomes exhausted through living and working as she has always hoped she would be able. The image of Ivan as a “shining knight” is another fairy tale trope, used to emphasise that Helen has finally been saved, much like she fantasised about earlier in the novel. Living with and being supported by Ivan suggests that Helen has reached her desired happy ending, and as they are settled in their relationship at the novel’s end, this conclusion to the narrative implies that life will remain this way for “ever after”.
17The novel can be considered as what Hunsaker Hawkins argues is offered by the genre of pathography: it is a “cautionary parable of what it would be like if our ordinary life-in-the-world suddenly collapsed” (1999, p. 2). Helen’s pathography can be considered a “cautionary parable” because she is shown to be forced to realise that the orderliness of life is false, and that at any time the expectation of being able to predict how life will play out can be shattered. However, this does not have to mean that the kind of life which was desirable and obtainable before illness is then completely out of reach. Hunsaker Hawkins’s use of the term “parable” suggests there is a moral, or at least important, message in these narratives, which is explored in this novel through its allusions to fairy tales, their conventions, and their messages. If Helen’s life is considered as a parable, the message conveyed is that even when expectations for life collapse, it does not mean that life is over. Instead, eventually one can accept this and adjust their expectations for the future accordingly. Although, imagining the future is no longer a straightforward process of thinking about what Helen would like to do with her life, as it was for her pre‑illness. Instead, her consideration of possible futures is predicated by limitations and fears, which she must learn to accept and adjust herself to accordingly, otherwise she will remain in perpetual stasis, desynchronized from herself and her peers, unable to move forward into any future at all.
18The State of Me makes visible Helen’s assumed narratives for her past and future, whilst also taking them apart to demonstrate that narratives will be adapted and reformulated simply by living. In her life before ME, Helen did not imagine that she would become sick with a debilitating, long-term illness. This is why she becomes stuck in the present: illness forces a halt on the life she lived pre‑illness, and she struggles to see how to progress into a future, once she finds herself following a different, unexpected story. However, Helen comes to realise that although she could not maintain exactly the life she had intended for herself before ME, by the novel’s end, she is able to find happiness in a present which resembles those hopes in part. She no longer feels desynchronized from her past because she has learned to let go of the expectations she once had for herself, which belong to a time in which her physical and mental abilities were vastly different to how they are in the present. Thus, through her acceptance that expectations must be adapted throughout life as personal circumstances change in unexpected ways, she finds herself content in the life she comes to lead. Reaching this narrative conclusion, in which Helen is more accepting of life’s contingencies, is shown to be a lengthy and difficult process of learning and letting go. As it was not easy for Helen to accept, and as ME is a long-term illness which will continue to impact on her future beyond the novel, it is suggested that this is a lesson which will need constantly relearned.
19Throughout the novel, it is shown that the experience of illness is not confined to the period in which its symptoms appear, nor to the diagnosis and treatment, but reaches much further into the time which came before and will come after those moments. This reading of The State of Me demonstrates how temporality can be used as a lens through which to understand both the physical manifestations and developments of disease, and the experiential side of illness, as depicted in fictional pathographies. The study of temporalities can be applied to many forms of texts in the medical humanities, not only for the conceptualisation of illness and disability in temporal terms, as is common in the medical field, but also for literary analysis of the various ways in which ill health impacts on protagonists’ subjective progression though life.