Living and Dying in Shadow Times

Abstract

Normative time frameworks obscure the ontological ambiguities of lived time, particularly in relation to illness and death. These forms of ambiguous lived time constitute what we call ‘shadow time’ – the unnoticed and the unknowable in our dominant temporal order. We examine what we call ‘diagnostic time’, ‘prognostic time’, ‘terminal time’ and ‘mourning time’ as shades of shadow time that elude the ordering of time that orders life. A critical stance to temporality is necessary, we argue, in order to recognise the regulatory imperatives of normative time, to mark the slippages between the demands of normative time and how time is often lived (out) and, importantly, to do justice to those living in the complicated ontological ambiguities of lived shadow time – where we see the intricate folding of life and death

Introduction

[L]ived time is a unity of the past, present, and future, and is more than simply a succession because the immediate ‘no-more,’ ‘present,’ and ‘yet-to-come’ are ordinarily never sharply separated. (Wyllie, 2005: 174)

How are we to make sense of lived time in the unfolding of life-limiting illness, death and its aftermath? While lived time is generally understood in terms of narrative biocontinuity (Berlant and Prosser, 2011: 181), as a succession from past, to present and future, in the face of death the ‘no-more’, ‘present’ and ‘yet-to-come’ often collide, fold back or collapse in on one another. In life-limiting illness, lived time is at odds with the idea of succession – of linearity and progression. These are the myths of normative time, brought into stark and often cruel relief when death threatens. We take as a given that there is no ‘objective time’. Rather, certain understandings of time become dominant in specific socio-historical contexts, conditioning the lives and experiences of individuals. In ‘modern’ western societies, dominant – normative – time has been produced through specific power/knowledge relations, it is secured through diverse means and held at multiple anchor points. Individuals are in turn produced through and in relation to this knowledge of time and compelled to (attempt to) ‘walk to its beat’. But within this contemporary normative time framework, which is generally centred on optimising life, the ontological ambiguities of lived time are obscured, particularly in relation to illness and death. These forms of ambiguous lived time constitute what we call ‘shadow time’ – time that exists in the shadows of normative time. The shadow here is the unnoticed and the unknowable in our dominant temporal order: the experienced alternative realities of time disavowed. Shadow time is non-linear, non-chronological and non-normative, casting those under its sway ‘into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings’ (Samuels, 2017: np).

In what follows, we are interested in reflecting on temporality in relation to life-limiting illness and death, relations between tenuous biological health status and sociality, and the socio-political challenges presented by living and dying in shadow times. We engage a range of affective histories and ethno-critical studies of the shadow times of life-limiting illness, terminal status and mourning to explore the alternative registers on which time operates. The article begins by providing a brief account of normative time – and the ways it orders and is used to manage biological life on both the individual/disciplinary and the collective/biopolitical level (Foucault, 2003) – before moving on to consider times that defy synchronisation with broader temporal schemas. We examine what we call ‘diagnostic time’, ‘prognostic time’, ‘terminal time’ and ‘mourning time’ as different shades of shadow time. Each of these forms of shadow time elude the ordering of time that orders life; they trouble (or indeed thwart) the ways normative time has come to govern our sense (and disciplining) of the self and the administration of the collective social body. These shadow times highlight the ways lived time – in life-limiting illness, approaching death and experiences of mourning – is constituted by multiplicities of time and dis/junctures. Here, the disruptive slash that interrupts the word ‘dis–/–juncture’, marks the diffractions, suspensions and ruptures of time, but also, importantly, the unities and disunities of the past/present/future of shadow time.

While a range of scholarship addresses temporality and life-limiting disease (e.g. Bury, 1982; Del Vecchio-Good et al., 1994; Locock et al., 2009; Stacey and Bryson, 2012; Timmermans and Stivers, 2018; Toombs, 1990) and extensive work explores time in relation to approaching death and bereavement (e.g. Fulton et al., 1996; Kenny et al., 2017, 2019; Seale and Addington-Hall, 1995), there is a tendency to focus on these experiences – their relation to temporality – in isolation from one another. Here, our concern is to consider what becomes visible when we examine these experiences together. As such, we draw this scholarship into conversation to offer a tentative overview of what Samuels (2017), as noted above, names the ‘wormhole’ of time across life-limiting disease diagnosis and towards (and beyond) death. Importantly, the shadow times we focus on do not necessarily exist (nor are they experienced) in linear progression but can instead be lived simultaneously or in patterns of circularity. Foregrounding a critical stance towards temporality is needed, we argue, in order to recognise the regulatory imperatives of normative time, to mark the slippages between the demands of normative time and how time is often lived (out) and, importantly, to do justice to those living in the complicated ontological ambiguities of lived shadow time – where we see the intricate folding of life and death.

Normative Temporal Schemas, the Ordering of Life and Shadow Times

The ordering of human life under modernity has proceeded, in large part, from the ordering of time, what Freeman (2010: 3) has called chrononormativity: the ‘use of time to organize humans toward maximum productivity’. Recalling Michel Foucault’s account of the ways time becomes regimented in the workings of modern power – to optimise both the docility and utility of the individual body – Freeman asks us to think about how the social patterning of time has been made to congeal into normative frameworks. As Foucault (1991: 160) tells us, with the rise of modernity and a more regimented disciplinary society, ‘[t]emporal dispersal is brought together . . . Power is articulated directly onto time: it assures its control and guarantees its use.’ Normative frameworks of how time should be thought about and used come to organise the behaviour and development of the individual, engendering what Freeman (2010: 4) refers to as a ‘temporal binding’, that shapes our lives and even flesh itself ‘into legible, acceptable embodiment’. Rather than cyclical, durational or metaphysical (as in other historical or cultural frameworks), time at this point becomes marked by its ‘linear, continuously progressive organization’ (Foucault, 1991: 161). Think, for instance, of the timetable and the successive segmentation of time and tasks that organise our lives, and how this linear time penetrates our very bodies, for example in expectations of normative development that condition the ways we become embodied subjects.

In Arranging Grief, Luciano (2007) deploys the term chronobiopolitics to mark how ‘arrangements of the time of life’ organise bodies at the collective level. Here, Luciano extends Foucault’s (1998, 2003) account of biopolitics and the optimisation of life – that regulatory form of power that monitors and manages the births, deaths, health, longevity and so on of the mass of bodies that make up the population – to emphasise its temporal dimensions. Under chronobiopolitics, ‘bodies are synchronized not only with one another but also with larger temporal schemae’ (Freeman, 2010: 4). In our chronobiological society, ‘the state and other institutions . . . link properly temporalized bodies to narratives of movement and change’ (Freeman, 2010: 4). These are teleological schemes of proper, appropriate or ‘healthy’ linear procession (and progression) through events of life such as birth, education, work, old age and death. ¹

Chrononormative linear time encourages individuals to exert control over time passing, to not waste it, to be future oriented and to be aspirational. These ideas are of course tethered to broader cultural narratives of individualism, progress and accumulation that are critical to modernity. Linear time is materialised through the clock: as progressive forward movement. Normative time is clock-time. In such an understanding, time is ‘rationalised, objective and quantifiable’, and thus imagined as external to self, to matter and materiality, and to social life (Gibson et al., 2009). Time as progressive movement pervades social life and our economic relations and rationalities. For instance, it is inextricable from economic principles such as efficiency, particularly in our current neoliberal era. But these ‘truths’ of time give rise to a particular embodiment of time such that it is simultaneously seen as external to the self, as noted above, and embodied in one’s position of the self in time. Time is tied to a sequence of socio-economically productive stages or decisions in our lives, where we see the logic of time-as-productive (Freeman, 2010: 5). This ticking of time (normative clock time) finds expression in our temporally ascribed life roles or milestones – such as childhood, teenage years, adulthood – in line with normative stages of life. We are called on to make ‘proper’ use of time (so that it is productive time) in relation to the expectations of these different points or stages of life, an imperative that is also linked to notions of ‘proper’ productive citizenship. As Sara Ahmed (2006: 554) notes:

For a life to count as a good life, it must return the debt of its life by taking on the direction promised as a social good, which means imagining one’s futurity in terms of reaching certain points along a life course. Such points accumulate, creating the impression of a straight line.

Importantly, this proper use of time anticipates and requires the pursuit of what McCormack (2021) calls ‘chrononormative healthiness’ for the ‘successful’ unfolding of the life course and productively useful ‘optimal’ life. Indeed, health itself, as Berlant (2007: 765) has noted, may ‘be seen as a side effect of successful normativity, [where] people’s desires and fantasies are solicited to line up with that pleasant condition’. The telos of time is thus that it continuously unfolds in a unidirectional way, a conceptualisation that obscures other more messy temporal realities.

Despite these overarching injunctions of normative temporality, life is often characterised by uneven time(s) – indeed multiplicities of time – that defy chrononormativity: these are forms of lived time that evade being synchronised with broader temporal schemas. This becomes all too clear in ‘shadow times’ – those timescapes or experiences of inhabiting time that exist in the shadows of normative time. Adam (1995: 94) first used this term to discuss times that are external to (the linear time of) employment relations but are still measured and assessed via the ‘mediating filter of both the rationalized time of the Protestant ethic and the commodified time of the market’. Shadow times are non-linear temporalities, that is, non-chronological and non-normative forms of lived time that are generally disavowed or lost from view, cast from knowingness in the dominant temporal order. In shadow temporalities, time operates according to non-economic principles. For example, caring for others, be it children, the elderly or the ill is illustrative, in that these times are not driven by economic rationalities; these times do not or cannot be made to follow schedules or timetables; and these times are not or cannot be ascribed economic value. Time in this context, however, is still measured in relation to normative time, in that it is seen (and ascribed negative value) as ‘unproductive’.

Shadow times are generally not focused on the future, because needs and demands are often immediate. For instance, in illness, pain may eclipse any thought of beyond, or an impending visit to the oncologist for a review may push all thoughts of the day after into an ether. Shadow times are also not necessarily progressive; time can be rendered still (with no necessary ‘end’ in sight or trajectory); or circular (with endless repetitive tasks or experiences making up each day). It is not easily qualifiable (how to account for it?), and these times are often marked by a lack of ability to exert control over time and how it is managed (needs get in the way, planning is difficult, there are externalities beyond your control). Importantly, these times can coexist alongside normative linear time but are at odds with it: the world still turns according to normative frameworks, and those occupying these shadow times are often all too aware of life marching on otherwise. While there are many forms of shadow time (be it unpaid care work, retirement, living through war or pandemic times, to name a few), our focus is on the shadow times of life-limiting illness, impending death and associated mourning, and the various experiences of temporality therein. What are the contours of time when life and death become entwined?

Lived (Shadow) Times of Illness

The first form of shadow time we want to identify is what we might call ‘diagnostic time’ – the experience of time related to the diagnosis of life-threatening or life-limiting illness. A diagnosis of life-limiting illness on one level renders time contingent; that is, any subsequent experience of time is conditioned by the biomedical identification of disease presence. While time is always-already conditional (dependent on a range of factors), with an initial diagnosis this reality becomes visible and interrupts or derails the lived experience of chrononormativity in that, as Leder (2021: 106) has noted, the ‘timeline of . . . life [is] fragmented’. If embodied human life is generally understood to unfold in some form of teleological forward motion in alignment with normative stages, Leder here marks how finding out about the presence of disease (that threatens life) introduces a fracture into that unfolding – one that at the least troubles and at worst defeats that expectation of forward motion (making visible the inherent precariousness that simultaneously underpins and is obscured by normative time). Diagnosis of life-limiting illness is time-limiting. Based on this fracturing, time itself might now become dependent on the impending prognosis that portends/foreshadows likely disease trajectory. This is a dependency that lines up with the biomedical model of time, which, as Sharp (2006: 10) has argued, is ‘wed to the rationale of disease theory; as such, a progression from diagnosis to treatment and cure is essential to the paradigm’. At the moment of diagnosis, however, the direction of this progression is unknown at the individual level. As Lord (2004: 7) notes in her autoethnography of breast cancer, a lump may be identified via mammogram and a diagnosis of breast cancer might be made based on a lab report naming the lump as ‘suspicious’, but nothing tangible is known until the disease can be staged and graded via biopsy or during surgery. What is to come, what can be expected, how much time there might be – is unclear. Hence, in the present (or in the meantime. . .), time is arrested or seized.

But this framing again seems to situate life-threatening disease in a temporal trajectory from definite diagnosis, forward to prognosis and onwards to ‘cure’ or ‘terminal’ disease status. Diagnosis is not always encountered or lived this way, however. For example, a diagnosis can be real but undetermined – a ‘seemingly certain’ diagnosis – where tests might point to it and the (frail or symptomatic) body might point to it, but a definite diagnosis cannot be made. Additionally, diagnostic time is not a discrete time, existing only at the moment of diagnosis; diagnostic time is not a temporally bound ‘event’. For, while the initial news of diagnosis may mark the advent of a new ontological order or reality for the individual, that diagnosis lives on regardless of the disease trajectory: individuals live and die with a life-limiting diagnosis, in that they can never return to a pre-diagnostic self. In other instances, we see that diagnoses are not singular: there can be multiple diagnoses that cascade one after another, that overlap and compound: congestive cardiac failure, chronic kidney disease, myocardial infarction. Regardless of these specificities, diagnostic time undoes our supposed hold on futurity and the idea of a temporal horizon because of the uncertainties of what is to come.

Any subsequent prognosis – predicting ‘the likely outcome or course of a disease; the chance of recovery or recurrence’ ² – inaugurates what Jain (2007, 2013) refers to as ‘prognostic time’. Estimators that are commonly deployed to develop prognoses include the length of time an individual experiences progression-free survival (following treatment), duration-specific survival rate (the percentage of people who are alive for a given period of time following diagnosis) and survival time (duration of life remaining, generally from diagnosis). Precisely because prognoses are estimations/predictions of what is to come, prognostic time anticipates a future but, as Jain (2013: 28) marks, also ‘detonates time, which shatters like so many glass shards’ and ‘severs the idea of a timeline and the usual ways we orient ourselves in time: age, generation, and stage in the assumed lifespan’ (2013: 29, emphasis added). Again, if normative time is understood as progressive with the future ahead of us, a prognosis of life-limiting disease brings that future into the present: the end (whatever those odds might be) hangs over the present and contours the now, and any assumption of expected lifespan is undone. ³

If the future is anticipated in prognostic time, it is projected, in the sense that (a) it foretells the probable course of disease and (b) it becomes all too clear that one will die (the prognosis makes mortality present): it is now tangibly only a matter of time and dependent on the particularities of the prognosis. Much like the way shadow time in general marks the inherent precarity that undermines normative time visible, so too does prognostic time make the omnipresence of mortality visible. But prognoses are always uncertain, because they are formulated as aggregates, where a subject will have ‘x’ in ‘x’ chance of surviving ‘y’ disease or an ‘x’ percentage of ‘y’ or ‘y’ outcome. ⁴ Providing a clinical prognosis is invariably ‘a precarious and even speculative practice’ (Lewis et al., 2020: 1) and, as Anderson et al. (2020: 902) note, ‘[c]linicians [have] used qualifying language to present their estimates as opinions rather than precise predictions, and [have] provided descriptive or categorical time estimates rather than a specific timeline’. This all adds to the precarity of the lived experience of prognostic time, which Broom et al. (2018: 683) found patients characterised as a ‘waiting’. ‘Wait’, according to the Oxford Dictionary, refers to ‘abstaining from action or departure till some expected event occurs’. In broader normative frameworks, waiting is seen as enforced and unproductive passivity. When living in prognostic time, however, waiting can be experienced as ‘a form of temporal and normative dislocation – a forced though often partial, removal from the steady velocity of normal social existence and productive citizenship’ (Broom et al., 2018: 695) Waiting becomes an enduring embodied ontology, where one waits:

for disease to progress; to feel better or to not feel worse; for a dreaded reality to emerge or for spontaneous remission instead; to be the 1% who achieve remission; to survive or to not survive; or, to stop waiting and start living. (Broom et al., 2018: 684)

This seems to be distinct to the arrest or seizure of time in diagnosis (a sudden shock and stoppage), precisely because the waiting in prognosis endures relentlessly. Waiting might also be understood then as suspension; within prognostic time, there can be long periods of remission or even kind-of ‘cure’, but what also remains is a ‘ticking bomb’, and ‘waiting game’ and so forth, all forged in the idea of a life (hopefully) perpetually ‘suspended’. The ‘stickiness’ of shadow time, its thick viscosity, suspends everyone (self, family, friends) and everything within it.

In this waiting or suspension, those in prognostic time can be haunted by the spectre of their own death, where the end appears before the beginning of the story (of actively dying), initiating what Jain (2007: 81, emphasis in original) calls ‘a pre-posterous viewpoint: one in which the end, or posterior, seems to precede the story’. Anticipating, projecting and living the future (now), highlights that prognostic time is characterised by the shifting of time, in the sense that one must re-orient themselves to time and how it is experienced. As Jain notes, one cannot know how long the disease was there (this requires a questioning of the past) and the future can be pulled into the present, in that death can become central to the ‘now’, initiating an active loss, rather than something that happens at the end of a lifespan. In prognostic time, while the future is constantly anticipated, it simultaneously dissolves into the past (what are my chances in light of survival rates) and life can become counterfactual in the sense that one might look back and yearn for a different story or see points of time where the story might have turned out differently. Perhaps perversely, life in prognosis is explicitly measured in time, in terms of the stages of treatment and disease (Jain, 2007: 80–81), but those times can constantly pivot (Ehlers, 2016: 85) as the disease progresses and new prognostic information emerges. Prognostic time thus presents a roulette of futurity: the ‘now’ is conditional on and always lived in relation to the certain–uncertainty generated by the prognosis – a spectre that haunts or hangs above, potentially ‘subsum[ing] . . . ambitions, desires, and hopes’ (Broom et al., 2018: 696).

Thinking about prognostic time in this way highlights how life-limiting illness ‘threatens the very foundation of time structuring by removing you from life’s comforting rhythms. It becomes a struggle not to fall out of time’ (Hagestad, quoted in Stacey and Bryson, 2012: 5, emphasis in original). But those living with such prognoses do, as we have seen, fall out of step with chrononormative expectations, those individualised seemingly ordinary bodily tempos and routines that are organised to achieve maximum productivity. They also fall out of step with chronobiopolitical arrangements of time that seek to synchronise the mass of bodies that make up the population and achieve some form of collective homeostasis through temporalised ‘stages’ of life: they might ‘fail’ to achieve life-stage related goals or reach certain stages, due to life being cut short or due to time spent on treatment that derails the steady course of life.

But other timescales are at work, ones that transcend the individual in prognosis, though they simultaneously condition the experience of life in prognosis. For instance, based on diagnosis and prognosis, the individual invariably enters into the biomedical arena for treatment, usually the hospital, where they are subject(ed) to institutional time. Institutional time seemingly returns to normative time, in that hospital operations function according to the schedule, the timetable and institutional routine. Importantly, however, the normative time of the hospital relates not to the seasons or the literal movement of the second and minute hand of the clock, but to the shifts (professions), the institutional risks (ensuring observation and aliveness of patients) and the perceived legitimacy of creating a liminal space of intervention. As such, time in/of the hospital is centred on the rhythms of the body and the institution, not the world/environment. This can produce a sense of institutional timelessness. In this timeless time, time might appear to stand still; think, for example, of the fact that there is no night in the hospital. Alternatively, time might drag interminably, especially when patients and loved ones are subject to the timelessness of waiting – for the doctor, for the nurse to do obs, for dinner to come, for transport for a scan, for the chemo to drip from the bag and slowly move through the body, all accompanied by the endless hospital beeps, interruptions and busy-ness of keeping people alive. We see here that time is differently valued within the institutional logics of the hospital, with patient/carer time made subservient to clinical institutional time (late appointments, waiting for rounds, etc.). But at the same time, importantly, imposing routine on the sick and dying body often fails: the body is unruly and its immediate needs might interrupt any moment, forcing the institution to adapt. Lastly, the institutional logics of the hospital are aligned with but not identical to a linear normative clock time, for while hospital time is dedicated to the pursuit of securing more (future) time, time in hospital can occupy the duration of the time one may have remaining.

Lived (Shadow) Times of Dying and Beyond

What happens when time does begin to run out, a reality crystallised with terminal illness? While often not delivered as an explicit clinical diagnosis, the experience of living with news of no cure or adequate treatment and the expectation of death reframes the prognostic time explored above, ushering in what Farman (2017) calls a state of terminality and what we consider as ‘terminal time’. While we have thought about prognostic time as more generally anticipating a future, terminal status evacuates a future, according to Farman (2017: 96), in that it ‘projects an absolute horizon’ and, thus, futurelessness. In Carel’s (2018: 171) account of terminal disease, she writes that: ‘[t]he future curls in on itself and at once becomes both exposed and radically curtailed. It has a clear end point.’ The shadow of terminal time actually reveals the finite horizon that is always there, just obscured by chrononormative assumptions about time as always marching forward.

Terminal time is again governed by the clock, precisely because measurable time at end-of-life is a ‘precondition of terminality’ (Farman, 2017: 104), even if that measurable time is vague. As such, Farman (2017: 98) writes that for many, time is ‘the key subjective experience of terminal illness’. While chrononormative time socialises individuals to orient themselves towards the future, in what Vincanne Adams (2009: 246) calls the ‘politics of temporality’, this future we orient ourselves towards seldom consciously includes death, despite the fact that this is the only certain future. Terminal diagnosis necessarily orients time and the individual towards this certain (vanishing) future – of death – putting the adherence to future-oriented chrononormativity beyond reach (Werner, 2021: 664).

Time is again now ostensibly progressive and linear; in that it is marching towards a certain end. With a terminal diagnosis, time necessarily becomes subject to calculation – months, weeks, days, minutes – not imagined expansively but in a countdown of time remaining. ⁵ As such, the ways we embody time are altered. Within normative arrangements, as already discussed, time penetrates the body in terms of conditioning our embodied subjectivity along lines or life-course/lifespan roles and expectations. This is interrupted in prognostic time more generally, in that the body is experienced in relation to an abstraction of time (what are my projected odds?). With a terminal prognosis, however, the body is experienced in relation to an (immanent) embodiment of time. As Farman (2017: 99) argues, terminal diagnosis ‘places a kind of ticking in the body. The terminal body is a body that ticks with the sound of its own end.’ This, then, is a brute materiality of time in the body.

Terminal time influences physicians and health professionals, patients and their loved ones. For example, doctors and allied health workers rely on notions of terminal time to make intervention and care decisions pertaining to what is appropriate now (Jain, 2010: 101). And for individuals with a terminal diagnosis and their loved ones, the notion of time running out can structure the contours of the everyday, causing a kaleidoscope of anxiety, fear, regret, anger, grief and beyond (Broom et al., 2016, 2019, 2020; Ehrenreich, 2001; Steinberg, 2015). Carel (2018: 172, in original), noting how terminal diagnosis altered her relation to mortality and time, points to other possibilities:

Time did change for me. I began to take it much more seriously. I began to make a point of enjoying things thoroughly: memorizing sensations, views, moments. I wanted to feel that I am living life to the full in the present. That I am now. By focusing on the present I learned to discount the future . . . I had nothing to wait for but bad news . . . Yes, Really Bad Things could happen to me at any minute. But not now. And now is where reality is: liquid time solidified into a crystal drop of Now. I grasped that drop with both hands, clutching, savouring, enjoying. Now became the place for me, too, to be.

If death is always one step ahead in terminal time, here Carel marks the unknowingness of when ‘time to death’ will become ‘time to die’, compressing time into only the present.

For Werner (2021), however, who recounts her experience with terminal cancer diagnosis, terminal time produces a sense of pervading dis-ease in the present. In her telling, this ‘no longer feeling at ease within ourselves’ (Trigg, quoted in Werner, 2021: 665) emerges for her in particular, due to the fact that she is not ‘ill’. She says, ‘I “know”, because of multitudes of medical tests and examinations, that I have a number of cancers in my body that will, in the not-distant future, bring about my death. But I do not experience these cancers.’ Her over-riding experience of terminal time is the orientation towards death and what she names a ‘slanting away’ from the life-lines of chrononormativity. This, for Werner (2021: 665), is a ‘living in a state of disturbed stasis’.

Clearly, there are a range of ways terminal time is experienced. As such, terminal status might mark the reality that death is to come, but this reality is lived in complicated ways. Importantly, it would seem that the qualitative experience of terminal time is conditioned by two key dimensions for individuals with life-limiting disease. First, it is conditioned by the quantitative contours of how much time might remain: necessarily there is a difference to living with a 30-year terminal prognosis to living in the last few days of life. Second, the qualitative experience of terminal time is conditioned by the state of bodily decline in disease progression, for when death is imminent, the daily undulations of the body become more pronounced: simply eating or drinking might become impossible and all that might provide a moment of reprieve is an ice-cube slowing melting on the tongue. With death imminent, there is a slow time with and of the body. The experience of terminal time is also not an empty void of a beating drum/ticking clock but is filled with activity: seeking out new drugs or entering new clinical trials, endlessly seeing doctors, attending to one’s bodily needs or, as one approaches death, time is filled with being pulled into the daily routines of the hospital or palliative care protocols. Additionally, it is also potentially a time for opportunities to stop and spend time with loved ones, to express things so far unexpressed, reconnecting people with life. Life then beckons at the same time that death exists as the beat behind all this activity – life in daily needs and routine, life of loved ones and carers whose experience of time diverges and still promises future-time – highlighting that terminal time is characterised by temporal incoherence – always in relation to and against (supposed) normative coherence (see, for example, Kenny et al., 2017: 387).

In the face of terminality, what are we to make of the time of mourning, or what we refer to as ‘mourning time’? In dominant narratives, mourning or bereavement is assumed to follow death and it is positioned as a temporary state – experienced by the bereaved – that is bound in and by time. Indeed, a ‘temporality of bereavement is culturally enforced in order to maintain the orientation of the living towards life and away from death’ (Kenny et al., 2019: 62, in original). This is key to chrononormative and chronobiopolitical injunctions that are focused on making (life) live (Foucault, 2003), where we see grief governed by expectations of return to (productive) living within the folds of linear chronological time. Mourning time is culturally understood as a ‘time out’ that ideally gives way to a ‘timely recovery’ such that the life/death separation is enforced (Kenny et al., 2019: 62). This notion of a linearity of bereavement, however, obfuscates the complexities of mourning time in various ways.

In the first instance, in normative cultural frameworks, mourning time is problematically considered to mark a severing of time, connection and ‘reality’ between the living and the dead. As Thomas Fuchs has argued, time before death with a loved one might be understood as a dyadic time of living together, which is characterised by experiencing the world together and intersubjective synchronicity (based on shared time and encountering life). It is a present time of ‘now’, where dyadic time and normative world time coincide (Fuchs, 2018: 49–50). With the death of a loved one, ‘lived time sustains a sharp rift’ (Fuchs, 2018: 50), in that the continuum of lived time together is cut from the present. Normative time ticks on, and supposedly the loved one recedes further and further into the past. For the bereaved, however, this is not necessarily the case: time (and grief) is more complicated than that. As Fuchs (2018: 50) explains, dyadic time remains in a sense for the bereaved, although this dyadic time and normative world time might now ‘run on separate tracks’. While dyadic time might be arrested and world time might flow, they can co-exist – even if they are desynchronised – in that the loved one remains as an as-if presence: they remain as-if present through their belongings that stay behind, their lingering scent and through encountering habitual shared routes or activities, where their spectre might burst through into the present (Fuchs, 2018: 52). This coexistence is possible, according to Fuchs (2018: 50), because arrested dyadic time (before) becomes ‘timeless time’, indeed an a-temporality. Alternatively, we might think of mourning time as recursive time, where time with the loved one stands still, while the bereaved simultaneously loops back to this earlier time in the memories of before. Mourning time is thus marked by what Fuchs (2018: 54) calls a core conflict: the simultaneous absence/presence of the loved one, leading to ontological ambiguity in lived time/space, or what Kenny et al. (2019: 72) describe as a ‘fluidity of relationship between the living and the dead’.

Second, while normative frameworks position mourning as existing in a chronological sequence after the death of a loved one, mourning time is expansive. It is unbound by temporal specificity or limit, in that there is no fixed time of mourning. Instead, as Broom and Peterie (2024: 15) found in their study of grief in the context of death and dying, mourning time ‘moved across the encounter with illness, the dying process, and post-death scenes’. The grief associated with mourning time comes in waves, as many have noted, and can be initiated by various events along the timeline of life-limiting illness. With each of these ‘events’, grief can also have a particular temporal character. For instance, the temporality of grief might be emergent with the diagnosis of life-limiting disease, abrupt with a shift to terminal status, gradual with the decline of the body and social relationships – for the self and loved ones – as death comes near, and it might be enduring after death (Broom and Peterie, 2024), where grief might be embedded in the material now of ongoing daily life. In this understanding, mourning time is not a temporal domain solely inhabited by loved ones, but also the self, who lives and approaches death with life-limiting illness. For the self, mourning time might be felt as time cut short, time running out or borrowed time. If mourning time is a time of bereavement – understood as to be robbed or dispossessed, deprived of a relation – this is not simply a time experienced by those who remain.

Living Time Otherwise

We have been concerned here with exploring lived time in the unfolding of life-limiting (and necessarily time-limiting) illness, death and its aftermath, where we see that the past, present and future do not exist or are not necessarily experienced in linear temporal relation or succession. Importantly, these lived times exist in the shadows of normative time, where time operates on alternative registers. Lived shadow time in the face of life/time-limiting illness and death is constituted by multiplicities of time that do not align with chrononormative or chronobiological expectations – defying our dominant understandings of temporal reality but also highlighting the regulatory imperatives of normative time and how people slip or fall out of step with the dominant temporal order.

Tracing through various shadow times of life-limiting illness and death, we see that these multiplicities of time are marked by dis/junctures, that is, both unities and disunities of past, present, future, that are often rearranged in alternative combinations or lived simultaneously. We see that in diagnostic time, time can be contingent, fragmented, arrested or seized (until further information comes), and a hold on futurity is undone. In prognostic time, we see time is severed, but can also stand still, drag or speed up, as the future is pulled into the present and the past is reassessed. In terminal time, we have seen that time is once again seemingly linear, progressive and calculated, as time remaining is assessed. But during terminal time, time is also potentially experienced as immanent to the body, as with and of the body, and is ultimately incoherent as individuals live with death on the horizon as the future is curtailed and the present is oriented to death. The time of mourning, as we have explored, is often experienced as time-less, a-temporal or enduring, but also as emergent, abrupt and gradual; in mourning time, the supposed delineations between past/present/future can dissolved into abstraction, in that the future (what is to come) and past (what has been lost) can be mourned simultaneously. As we noted at the outset, however, we do not see these different characterisations of shadow time as unfolding in any linear or sequential fashion but as folding in on themselves, too.

Looking at these shadow times alongside one another highlights various socio-political challenges, underscored by a central tension; that those who occupy shadow times live parallel modes of life that are generally ignored in normative arenas and very rarely (adequately) accounted for. What life-limiting illness, approaching death and beyond highlight is that none of us live faithfully within or are able to align fully with normative time. Chrononormativity is a moral-temporal standard that everyone falls short of, and these forms of shadow time that we have explored illustrate in particularly vivid detail the contours of those failings. Other types of time lived in the shadows – the ‘unproductive’ time of unemployment, child-care and other carework, varying/dis/ability, retirement, pandemic time, retirement and so on – are similarly illustrative. Here, however, we have concentrated at the hinge of life and death, forward progression and the ‘cliff’ of mortality. Perhaps, then, the question ahead is one related to what the instance of life/death tells us about the shadow times that are the undertone of daily existence. Illness and death demand alternative discourses to move out of the shadows, but they also teach us about time more generally and the inequitable standards of normative arrangements of time. If chrononormative and chronobiopolitical society is predicated on teleological anticipatory modes that exclude shadow times from broader sociality, death reveals in particularly acute and affecting ways the harms of the false promise of chrononormativity for everyone, but specifically for those living in the folds of life and death.