To see myself as in a story, or a series of stories, is to see my life in time as stretching out toward possibilities (both hopeful and fearful) which I have some influence in bringing about (Mattingly 1994: 817).

If any of our readers have experienced someone unwell, be it a broken bone or long-term illness, we may too have found ourselves asking them questions which relate to their future possibilities. What happened? How long will recovery take? Get better soon! While these may often feel like instinctive questions to ask in the face of illness, in this essay I examine the role and significance of temporal narratives. To avoid derailing into a philosophical argument on existential theories of temporality (see e.g. Heidegger 1962 or Ricoeur 1980), for the purposes of this essay I understand time as a measurable period of existence (in its loosest sense). As Ricoeur (1980) hypothesised, I too take narrative and time to be reciprocal.

Care trajectories in biomedical discourses frequently work chronologically, by addressing patients’ pasts, to help them understand their present, to then support them in building a successful future. Through reference to two ethnographies covering addiction recovery and dementia, I briefly expose the challenges of illness narratives which are past-oriented and focus on the assumption of time as a tripartite past/present/future sequence. I then hope to offer a useful alternative in the form of ‘illness as many narratives’ (Bolaki 2016: 212).

Mattingly’s concept of ‘therapeutic emplotment’ theorises the relationship between a head-injured patient and occupational therapist in ‘clinical time’ (Mattingly 1994: 811). In Mattingly’s focus on clinical time, the patient is not a passive voice in their storyline but one who actively negotiates and creates the narrative they employ with therapists because ‘if the patient does not view therapy as valuable, it will not be valuable’. Mattingly refers to the storyline as a tool for social action, with one’s ‘series of stories’ aimed at building coherence in their care trajectory (ibid: 814-817). While ‘emplotment’ appears important to explore in clinical time, the analytical primacy of ‘storytelling’ places undue emphasis on talking as a means of constituting relations. As explored in what follows, ‘talking’ is often the most challenging of all. The paradox of narrative time emerges here because the dominating focus on a ‘movement toward endings’ may be impossible to envision for those in which illness becomes a permanent adaptation to their life. Therefore, life may not be ‘stretching toward possibilities’ one can ‘influence’ at all. While Mattingly acknowledges that ‘improvisation and revision are necessary’ in care trajectories (ibid: 811), I believe creating a narrative which prioritises ordering the past and future, with hope placed on said future of possibilities, partially neglects the fluctuating nature of recovery and people’s varying conceptions of the structure of time.

We witness the struggles of agency in past-oriented care trajectories in Garcia’s (2008) essay on chronicity, which focuses on Alma, a heroin addict living in Española Valley, New Mexico, and her attendance at the New Mexican clinic rehabilitation program.

Alma’s account of being ‘pushed’ into remembering that she is at perpetual risk of relapsing into ‘past’ addictive behaviour provides a powerful critique of the model of chronicity, an approach that began, in part, as a well-meaning attempt to dispel the moral implications of being a drug addict (Garcia 2008: 737).

Alma’s account exemplifies the complexity of narrative time highlighted in Mattingly’s theories, since ordering people’s ‘series of stories’ (Mattingly 1994: 817) results in seldom more than a ‘well-meaning attempt’ of care (Garcia 2008: 737). The rehabilitation programme’s chronologically oriented narrative focuses on addicts’ pasts and their sequence of personal stories which led them to addiction, to try and prevent their relapse. Popular ‘talking therapy’ techniques at the clinic worked through getting attendees to gain peace with their past traumas. This proved complicated for Alma and her fellow clinic attendees, many of whom were conflicted by traumatic childhoods and tried to erase said memories. Alma’s violent domestic past meant ‘The clinic didn’t work because its focus on the past made life unbearable’ (ibid). The force in which Alma had to resurface past stories continually plagued her present and, combined with her insomnia, life became so treacherous she quit the rehabilitation program despite knowing that noncompliance could result in prosecution. She struggled to stay clean because ‘it’s not that I wasn’t ready … it’s that there’s nothing to be ready for.’ (ibid: 733), implying an inability to forecast a future of hope. Alma shows, therefore, that it is not ‘possibilities (both hopeful and fearful)’ (Mattingly 1994: 817) that motivate one’s care trajectory, as Alma’s fearful future hindered her ability to remain clean. Consequently, for those suffering from addiction, emphasising narratives of the past in care appears ethically ambiguous. Alma ultimately fatally overdosed and her memorial provided greater ambiguity over her past-oriented care trajectory. At her descanso, her father placed a wooden cross with ‘no te olvides [never forget]’, whereas her husband placed a syringe cross, ‘expressing her need to forget’ (Garcia 2008: 741)ⁱ In the face of Alma’s struggle to see her ‘life in time’ (Mattingly 1994: 817), the clinical practice of using temporal narratives, with an emphasis on ‘the past’, appears to flounder as an appropriate therapeutic framework. The story-like nature of emplotment did not emerge here as an effective healing method; on the contrary, the necessity to relive traumatic pasts to ‘comply’ with the rehabilitation programme seemed to neglect her care entirely.

Alma’s fatal overdose unfortunately demonstrates the adverse effects of Mattingly’s theory that care is only valuable with and relies upon emplotment. The chronological nature of therapy management in biomedical discourses creates unintended consequences for those who desperately want to forget their past, like Alma, but also for those who cannot always remember their past, such as Charlene, who is living with dementia. Taylor (2008), the author and Charlene’s daughter, rejects narratives of the past to feel that she is caring responsibly for her mother. Care would theoretically then be non-valuable for Charlene because dementia warps her ability for social engagement. Taylor argues, however, that focussing on Charlene’s inability to engage and reciprocate in her care instead reflects far greater on the ‘others’ (such as Charlene’s close friends) in her care narrative as it instead concerns whether ‘we grant her recognition?’ (Taylor 2008: 315). Despite Taylor demonstrating that name recognition is a ‘narrow sense of remembering’, it highlights how socially valued exchanges are dependent on recognition memory and lacking this ‘correct’ form of social exchange means you are not recognised ‘as fully social persons and members of a community’ (ibid). As this ‘correct’ form of receiving care emerges, it becomes ‘wrong for a person to forget’ (ibid: 318), since recognition memory (involving dialogue and exchange) becomes a metonym for caring for others. In past-oriented care trajectories, Charlene and Alma’s struggle to contend with the past causes neglect of their care. Recognition, memory, and care subsequently develop a complicated relationship, since here, recognition constitutes memory, and remembering implies caring for others. Chronological modes of recognising personhood are thus limited, and an abandonment of past narratives is paramount in caring for those with dementia. We must adapt our understanding of recognition, reciprocity, and memory in caring for people with dementia, because a focus on the past focuses on the ‘others’ at the expense of the person requiring care.

Online methods of narrating illness are increasingly becoming popular forms of self-help, such as through social media or blogging. I welcome this alternative to chronological structures of illness and care trajectories, meaning instead of people having to order their ‘series of stories’ (Mattingly 1994: 817), they can promote their ‘illness as many narratives’ (Bolaki 2016: 212). Bolaki explores how Salvatore Iaconesi hacked into the medical data on his cancerous brain tumour in 2012 to gain agency in his illness. This was to open-source a cure by uploading the data to his website, La Cura, resulting in over 500,000 people interacting to create ‘co-authored narratives’ for his care (ibid). Digital forms of expression and the fast-paced communication methods they entail promote agency by removing the ‘patience’ from being a ‘patient’, with Iaconesi explaining in his TedTalk this meant he no longer had to be ‘the one who waits’ on medical officials in his care trajectory (2015: 2:00). Open sourcing his medical information invited a host of global collaborators from artists to oncologists, enabling a trajectory for concurrent emotional, spiritual, and medical cures (ibid: 5:00). Iaconesi recalled the comfort of one collaborator commoditising a 3D printed version of his brain tumour, ‘Now you can have my cancer too! Which is a nice thing, if you think about it, we can share our cancer’ (ibid: 5:36). Sharing his illness in a micro-blog style on his website creates ‘no considerable temporal distance’ (Bolaki 2016: 212) in his narrative, thus subverting the emphasis on chronological care trajectories. As Heidegger theorises, ‘now’ articulates a ‘making-present’, and the phenomenological interpretation of this is ‘what we call “time”’ (Heidegger 1962: 469, 460; Ricoeur 1980: 72). Perhaps Iaconesi’s present-oriented focus on the ‘now’ through concurrent cures and care trajectories can be considered as a more ‘caring’ narrative time for those experiencing illness. Some view this transparency of illness as a ‘gruesome exhibitionism’ (Bolaki 2016: 220), but I believe Bolaki and Iaconesi demonstrate how moving from narratives of the past to digital narratives of the present reinstate patients’ agency by enabling collective healing and the sharing of suffering.

People experiencing illnesses are frequently stuck in a nexus of time, having to calculate their next appointments, medications, or even lifespan (Morris 2008). Past-oriented care trajectories thus appear so commonly because notions of recovery and healing entrench discourses of harmful pasts and hopeful futures. However, we must pry from the naturalisation of temporal discourses in care trajectories because, for many people, time is simply out of their control. Rather than prioritising narratives of the past, instead, I hope to have shown that focusing on the opportunities that lie in present-oriented narratives can reinvigorate the ‘care’ in care trajectories.

‘Get better soon!’ might not, after all, be the best way to respond to illness.

Endnotes

i. Alma’s passing was unexpected, and the conclusion was that Alma accidentally overdosed on prescription painkillers and heroin. Alma confided in Garcia that heroin was the only way she knew how to restfully sleep as a lifelong insomniac (2008: 739). A descanso is a cross placed in a public area near someone’s resting place, normally depicting an unexpected or violent death.

Marni Owen is an MPhil student in Health, Medicine and Society at the University of Cambridge, and a member of Darwin College. Before this, she graduated from the LSE with an undergraduate degree in Social Anthropology and worked in NHS management. Marni is currently pursuing her dissertation on technologies of care and caring relations among care home workers, and her research interests lie in caregiving, the ‘digital’, temporality, and especially anything concerning all three! 

References

BOLAKI, S. 2016. Illness as Many Narratives: Arts, Medicine and Culture. Edinburgh: Edinburgh University Press.

GARCIA, A. 2008. THE ELEGIAC ADDICT: History, Chronicity, and the Melancholic Subject. Cultural Anthropology 23:4, 718-746.

HEIDEGGER, M. 1962. Being and time (trans. J. Macquarrie & E. Robinson). Oxford: Blackwell Publishers Ltd.

IACONESI, S. 2015. ‘Salvatore Iaconesi: What happened when I open-sourced my brain cancer’ (available online: https://www.ted.com/talks/salvatore_iaconesi_what_happened_when_i_open_sourced_my_brain_cancer, accessed 12 January 2024).

IACONESI, S. & PERSICO, O. 2008. LA CURA (available online: https://la-cura.it/, accessed 12 January 2024).

MATTINGLY, C. 1994. The concept of therapeutic ‘emplotment’. Social Science & Medicine 38:6, 811-822.

MORRIS, D. 2008. Diabetes, Chronic Illness and the Bodily Roots of Ecstatic Temporality. Human Studies 31:4, 399-421.

RICOEUR, P. 1980. Narrative Time. Cultural Inquiry 7:1, 169-190.

TAYLOR, J. 2008. On Recognition, Caring, and Dementia. Medical Anthropology Quarterly 22:4, 313-335.