‘Running out of time’: Exploring the concept of waiting for people with Motor Neurone Disease

Abstract

Waiting is a part of everyday life. It is often characterised by its banality: its quotidian nature. Time spent waiting can be seen as boring, wasted, and at times painful or distressing, or conversely hopeful or full of potential. The experience of Motor Neurone Disease (MND) reveals a population for whom (limited) time has a significant impact on quality of life. This paper will argue that waiting, for people with MND, exemplifies the relationship between time, power and agency. In so doing we can better conceptualise the manifold ways in which time and waiting are experienced through choosing to wait, enforced waiting and waiting when time is known to be ‘running out’. Through a sociological analysis of multiple forms of waiting three key themes emerged that characterised waiting as powerlessness; emotional (as a form of production), and; alternating as an experience between patience and endurance. This paper challenges the passivity, universality and ambivalence ascribed to waiting and instead argues that waiting affects the ‘time left’ for people with MND. It also offers up a lens through which to view time through the multiple textures and tensions of waiting produced through chronic illness.

Waiting in organisations

“…The subjective experience of waiting has generally been described as one that is negative, associated with feelings of powerlessness, hopelessness, frustration and disappointment, particularly in the case of lengthy or chronic waits (Auyero, 2011; Schwartz, 1975), although the potential for waiting to be experienced as a hopeful time that is potentially both active and productive has not been discounted (Ferrie and Wiseman, 2016; Rotter, 2016). Waiting can also be regarded as an essential feature of working life, since a working day with no pauses would be experienced as overly intense and draining.…”

“…Studies of waiting in other literatures across the social sciences can be linked with the organisational temporality literature to show that the subjective experience of waiting, especially chronic, long-term waiting, may be associated with feelings of powerlessness and a limited sense of agency (Ferrie and Wiseman, 2016; Liang, 2017). For example, Griffiths (2014) found that the waiting experienced by refused asylum seekers and detainees led to disrupted temporalities and engendered feelings of instability and precarity.…”

“…Klingemann et al., 2018; Waiting Times, 2018), illness (e.g. Ferrie and Wiseman, 2016) and migration studies (e.g. Rotter, 2016; Turnbull, 2016) has, nevertheless, revealed the importance and prevalence of waiting both as an organisational process and as an individual experience.…”

“…It is also from the individual’s perspective an interstitial period associated with powerlessness (Auyero, 2011; Khosravi, 2014) and with lost opportunity (Turnbull, 2016). Conversely, it may be filled with anticipation (Ferrie and Wiseman, 2016; Rotter, 2016), activity (Gustafson, 2012), opportunity (Sull, 2005), or rest (Gasparini, 1995). Waiting may equally be a necessary component of the working day, since working under constant pressure can be associated with work intensification and ill-health (Felstead et al., 2016).…”

‘It’s just limboland’: Parental dementia and young people’s life courses

“…This corresponds with research by Broom et al (2018) on cancer and waiting. Similarly, in their research with individuals with motor neurone disease, Ferrie and Wiseman (2016) posit that while waiting is often constructed as negative, they cite the hope it can sometimes invoke, a hope that is absent when illness is terminal. They go on to argue that in terminal illness, waiting (for treatment, deterioration) ‘challenges the idea of waiting as ambivalent and banal’ (Ferrie & Wiseman, 2016, p. 538).…”