The University of Sydney Therapeutic Narrative Illness writing and the quest for healing Roslyn Brooks A thesis submitted in fulfilment of the requirements of the degree of Doctor of Philosophy Department of English October 2004 Abstract This thesis examines how narratives of illness become therapeutic narratives. The method is to engage closely with (mainly Australian) texts – literary accounts of illness – in order to identify key elements that effect a healing function (healing is distinguished from cure). Textual analysis is placed in the frame of medical information about the relevant conditions, and theoretical perspectives that provide a cultural and historical setting for illness writing. Bio-medical discourse foregrounds the clinical process of diagnosis, investigation and treatment and relegates the personal meanings of illness to secondary place. The thesis explores ways in which the patient’s account provides an alternative discourse that supplements – and at times challenges – the medical discourse. Illness foregrounds the body, and illness narratives confront the reality of embodied experience. Illness that is chronic or incurable, ageing, physical and mental decline, and the inescapable prospect of death confront the patient with the need to find meaning in experience. Narratives of illness may serve as ventilation, diversion or escape for the patient. They may provide practical help, information and consolation to family and carers, and others who suffer with the condition. These are valuable functions, but I argue that illness writing may embody more powerful therapeutic elements that transform and give meaning to the illness as part of the individual’s life story. Key therapeutic functions identified are perversity, empowerment and transformation. Healing can begin with the empowerment of telling one’s story. Illness stories may challenge the stigma and the subordination associated with disease. They can affirm a sense of belonging and community where illness intersects with other forms of marginalization. Powerful illness narratives are often characterised by perversity, overturning the assumptions of dominant cultural discourses – including those that place authority with the medical practitioner and demand acquiescence from the patient. The most powerful therapeutic narratives transform the story of illness into a new story. Acknowledgments There are three people without whose help this thesis would not have come into being. My husband Mike has unfailingly given encouragement and support, as well as practical advice from his own research experience. My daughter Katrina’s help with proof-reading and editing has been substantial, but most valuable to me was her enthusiastic interest in my topic. Above all I want to thank my supervisor, Noel Rowe, for his guidance, critical insight, intellectual stimulation and friendship – and not least for the wit and inspiration of his poetry. Contents Chapter 1 Introduction: the narrative context 1 Chapter 2 Inside stories: the narratives of medical writers 16 Chapter 3 The patient speaks 55 Chapter 4 Stories coming apart: ageing and dementia 89 Chapter 5 Women’s stories: illness and the female body 131 Chapter 6 ‘Night stories’: AIDS writing 166 Chapter 7 Strong voices, strong people: Aboriginal stories of illness 200 Conclusion 238 Bibliography 244 Presentation and Referencing Convention This thesis follows the MLA Handbook 6th edition for matters of presentation, using parenthetical documentation. References cited in the text appear in the Bibliography. Chapter 1 Introduction: the narrative context Streaking through the jungle on a gaudy leopard, cape billowing out behind me as if I were aflame, I have on my head (my greying pate) – and this is vital – a hat, a black, gargantuan fedora with a drooping brim, and streaming from one side of it is a cassowary feather (of all things). (Dessaix Night Letters 3) The narrator of Night Letters confronts an incurable illness and the prospect of death. The wild cat that prowls his dreams after he has been given the diagnosis seems to trap him between two equally terrible choices: between fleeing or fighting – and either way being torn to pieces ‘limb from bloody limb’ (80). Riding the leopard represents the possibility of an entirely new way of confronting illness and fear. The hat (the hat is ‘vital’ stresses the writer) – comical and defiant – signals the perversity of transformation. Prey astride the predator enacts a reversal: the victim has seized, if not control, at least a share in the beast’s wild power, and turned terror to exultation. It is the possibility of therapeutic transformation that I seek in this exploration of illness writing. How does a personal account of illness become a healing story? When patients resist the authoritative discourse of medicine to tell their stories in their own voices, do these narratives of illness incorporate a sense of the therapy of narrative? What are key elements that transform the account of illness into a healing story? This thesis looks at the turning point where writing that arises out of illness and encounter with the world of Medicine becomes therapeutic narrative: where the leopard’s prey, flinging on a feathered hat, streaks into the jungle mounted on the beast. Interest in the patient’s narrative of illness arises in the context of a shift in the medical paradigm, and of broader social and cultural changes. The twentieth century was characterised by the breakdown of master narratives that implied a fixed point of reference, a coherent and centred view of the world and the promise of grand solutions, whether religious, political or scientific. In Medicine, shifts in the scientific paradigm and awareness of the limitations of biopositivist science as the sole foundation of medical understanding have challenged medical authority and the position of the doctor as expert. Such broad changes can be enabling for personal narratives of illness. Challenge to privileged positioning and unsettling of expert discourses have opened a space for the individual voice. The individual’s story of illness foregrounds the subjectivity of illness in two senses: the patient as subject, central character in the story; and illness as a subjective experience: the personal and emotive meaning of illness. I will argue that patients’ stories of illness can pose a counter discourse to dominant cultural ‘narratives’, particularly the discourse of medical authority. Resisting subordination to dominant discourses is one way in which an illness story may become therapeutic narrative. Narrative has two necessary components: story and discourse (Chatman 19). The story consists of the events, organised into a structure or plot, and the ‘existents’ (characters, settings) which make up the content of the narrative. The discourse is the mode of expression, the means by which the content is communicated. Narrative presupposes a narrator and an audience: the viewpoints of both shape meaning from the elements of the story. Discourse as a form of expression includes the perspective or point of view that is explicit or implied in the narrative, and this reflects the cultural and historical context. The concept of narrative thus incorporates cultural context. Narratives exist within a social and historical setting, they rest on a body of assumptions and understandings, some overt, others hidden. Postmodern understanding has unsettled the notion of fixed frames of reference, neutral vantage points. In the latter half of the twentieth century, there was a fundamental shift in the social sciences with the ‘understanding that human beings live within and embody socially constructed narratives’ (Donald 17).While literature has traditionally studied (fictitious) narratives, ‘stories that are untrue and highly respected’, a widely held contemporary view is that disciplines such as history, theology, anthropology and psychiatry ‘are all concerned with narratives in one way or another’ (Martin 23). Fiction creates a coherent and meaningful narrative from imaginary events; history constructs a coherent and meaningful narrative from the events of the past. Narratives are the means by which we make sense of experience. ‘Master narratives’ are broad organising frames of knowledge that have traditionally been privileged as central and authoritative. The shift away from privileging ‘expert’ positions and the recognition that there is no ‘neutral’ position has opened a place for personal narrative in many academic disciplines, including health sciences, as the following excerpt illustrates: [this book looks at] links between the individual lived experience of disability and the macro-social context in which disabled lives are played out. The use of life story narratives helps us to understand how lives are embedded within societies, and influenced by periods of social change. Using narrative, oral histories and autobiography can help to reveal ‘lost’ stories of disability, redressing the historical absence of marginalised groups…people may also be able to empower themselves, and others, through the telling of life stories in their own voices. (Priestly 245-6) Within the broad social context, unsettling of master narratives is associated with changing attitudes to previously marginalised, stigmatised or ‘invisible’ groups. Post-colonialism incorporates a challenge to the grand narratives of racial and cultural superiority that were used to justify Empire: the political, economic and religious colonisation of the nineteenth and