‘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.