Literature and Medicine II

Women in the Medical Profession: Personal Narratives

A Quest Through Chaos: My Narrative of Illness and Recovery

by Katie Ellis, Edith Cowan University and University of Western Australia, Australia

Writing testimony, to be sure, means that we tell our stories. But it also means that we no longer allow ourselves to be silenced or allow others to speak for our experience. Louise DeSalvo, Writing as a Way of Healing (216)

Stories of people trying to sort out who they are figure prominently on the landscape of postmodern times. Those who have been objects of others’ reports are now telling their own stories. As they do so, they define the ethic of our times: an ethic of voice, affording each a right to speak her own truth, in her own words. Arthur W. Frank, The Wounded Storyteller (xiii)

Introduction

1 Seriously ill people need to tell stories: to their doctors, to their family, to their friends, to themselves. This article is both an illness narrative and an exploration of illness, narrative, recovery and critical disability studies. Telling illness narratives is a valuable means of recovery when the body becomes what the individual never expected it would—damaged. Narrative is vital, as the ill person works out their changing identity, and position in the world of health, continuing when they are no longer ill, but remain marked by their experience.

2 Following the tradition of illness auto ethnographers (Frank, The Wounded Storyteller; Ettore; Rier), this article critically examines the role of narrative throughout recovery from serious illness or trauma by connecting the (my) autobiographical to the social, political and cultural. The paper is divided into six sections and explores three different narrative structures commonly adopted by people telling illness narratives and the way they are shaped by culture. I begin by establishing illness narratives as a field of enquiry within critical disability studies and introduce my own experience with life threatening illness as the motivation for storytelling. The next three sections of the paper utilise Arthur Frank’s chaos, restitution and quest illness narrative structures in conjunction with Joseph Campbell’s hero’s journey to argue recovery is a process of travelling through and returning to these modes of storytelling. Restitution desires the past and prevents recovery while chaos does not consider recovery. When the wounded storyteller arrives at the quest narrative and draws together chaos and restitution with a sense of purpose, recovery can be achieved. Although these narrative types are not the only structures available (cf. Couser), I introduce them here as an opportunity for reflexive self research. The focus then shifts to the recent emergence of illness narrative blogging to consider their cultural significance before exploring stigma and resistance to the telling of illness narratives and offering conclusions towards this end.

3 Although influenced by medical sociologists such as Arthur Frank and Elizabeth Ettorre, I write this article as a critical disability theorist seeking to refine the social model of disability in order to recognize the impact of impairment and illness on those who find benefit from a social understanding of disability. The social model of disability sees disability as the negative social reaction to impairment which has resulted in disempowerment and an inaccessible environment. This model has traditionally neglected to include people suffering from illness or debilitating impairments. I proceed alongside recent calls to broaden the scope of theorization to reflect on biology and the difficulties that result from illness and impairment and can’t be blamed purely on a disabling society (Shakespeare 39).

4 Like Mitchell and Snyder (2), I choose to use the terminology “people with disability” throughout this paper rather than “disabled people” which is favoured by social modellists. Via this terminology I recognise disability as more than a medical problem yet acknowledge the body (including medicalized experiences) within my theorization of disability and social construction. Mitchell and Snyder’s definition works well with Goffman’s notes on stigma creation and encompasses people experiencing illness. By drawing on a series of journal entries, video diaries, letters, and blogs, my narrative and argument moves between and alongside the chronology of the catastrophic event which has motivated both my research and writing and personal perception of the world. While I have attempted to record months as accurately as possible, the exclusion of dates from some of the reflective material arises from the chaotic experience of my illness and recovery. I did not always record the date on which I wrote something, perhaps because a future was so out of sight and in many ways time did stand still.

Illness Narratives

5 Monday 24 March 1997 I had a massive stroke and my life depended on controversial surgery. Eventually my ability to walk would depend on exhaustive rehabilitation. I was 18 years old. I never expected such a thing would happen to me. Recovery seemed very long and required a total reworking of who I believed myself to be:

On Saturday it was exactly 10 years since I had a stroke and my life changed forever. And that day was the first ‘anniversary’ that I wasn't sad. I had a really awesome day. I read somewhere that you're more likely to have another stroke within 10 years of your first one, so I dunno if that’s why I was feeling good or if it’s cause I realise that my life ‘changes forever’ almost every year... (Unpublished Livejournal blog 26 March 2007)

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