THOUGHTS ON FIRE: THE USE OF METAPHORS IN EPILEPSY NARRATIVES A Thesis Submitted to the College of Graduate and Postdoctoral Studies In Fulfillment of the Requirements For the Degree of Doctor of Philosophy In the Department of Psychology Clinical Psychology Program University of Saskatchewan Saskatoon, Saskatchewan Canada By Devon Rose Andersen © Copyright Devon Rose Andersen, February 2017. All rights reserved. PERMISSION TO USE In presenting this dissertation in partial fulfillment of the requirements for a Postgraduate degree from the University of Saskatchewan, I agree that the Libraries of this University may make it freely available for inspection. I further agree that permission for copying of this thesis/dissertation in any manner, in whole or in part, for scholarly purposes may be granted by the professor or professors who supervised my thesis/dissertation work or, in their absence, by the Head of the Department or the Dean of the College in which my thesis work was done. It is understood that any copying or publication or use of this thesis/dissertation or parts thereof for financial gain shall not be allowed without my written permission. It is also understood that due recognition shall be given to me and to the University of Saskatchewan in any scholarly use which may be made of any material in my thesis/dissertation. Requests for permission to copy or to make other uses of materials in this thesis/dissertation in whole or part should be addressed to: Head of Department Department of Psychology University of Saskatchewan Saskatoon, Saskatchewan S7N 5A2 Canada i ABSTRACT Epilepsy has a long history of social, cultural, and historical interpretations and representations. Individuals diagnosed with this condition must often learn how to interpret and communicate new experiences after epilepsy disrupts their previously held concepts of identity and control. Both the physical experiences related to epilepsy, particularly seizures, as well as the social experiences related to epilepsy, particularly the impact on one’s social identity, can be difficult to communicate using conventional language. As such, individuals with epilepsy might resort to metaphor to convey complex experiences using more accessible language. Previous research has identified a significant role for metaphor use in illness narratives (Kleinman, 1988), as well as in epileptic seizure conceptualizations (Plug et al., 2009), suggesting that metaphor use can be useful in communicating and understanding epilepsy experiences as conveyed through narrative. In order to explore metaphor use in epilepsy narratives, five participants with epilepsy were invited to share written accounts, as well as oral narratives that were then transcribed. These written and oral narratives were analyzed employing structural and thematic narrative analysis, as informed primarily by Riessman (2008) and Charon (2006). Participants’ use of metaphor was as diverse as the participants themselves; the interpretations unearthed a wide range of conceptualizations of epilepsy, shedding light on shame, invisibility, physical struggles, and perceived stigma, with narratives and metaphors that primarily communicated attempts to gain control. A focus on perceived control has commonly been identified in epilepsy literature and has increasingly become a target in psychological treatment approaches for epilepsy. By attending to the metaphor and narrative strategies used to convey epilepsy experiences, including strategies used to convey experiences of control, we can highlight the utility and importance of healthy communication strategies when providing support to those with epilepsy. ii ACKNOWLEDGEMENTS First and foremost, I must thank those who provided their narratives; beautiful and vulnerable, thoughtful and honest, the stories that were shared, through publication and in person, were what inspired this research and what kept me searching for ways to honour them. I must thank my supervisor, Ulrich Teucher, for his patience, wisdom, and creativity, for coaching me through rainstorms and snowstorms, and for innumerable online pep talks. I would also like to thank my committee members Lorraine Holtslander, Linda McMullen, and Megan O’Connell, who wisely advised me to keep the project manageable, then provided guidance and supported the many directions that I travelled. Finally, I wish to thank my family and friends for their belief in me, and mijn liefje, Barbara, for her love, patience, and belief that this was one more adventure we could conquer. iii TABLE OF CONTENTS PERMISSION TO USE .................................................................................................................. i   ABSTRACT .................................................................................................................................... ii   ACKNOWLEDGEMENTS ......................................................................................................... iii   CHAPTER ONE ............................................................................................................................ 1   Introduction .................................................................................................................................... 1   CHAPTER TWO ......................................................................................................................... 10   Literature Review ........................................................................................................................ 10   2.1 Metaphor Use and Illness ................................................................................................................ 11   2.1.1 Origins of metaphor. .................................................................................................................. 11   2.1.2 Metaphor theory. ........................................................................................................................ 11   2.1.3 Metaphor theory and illness. ...................................................................................................... 14   2.1.4 My definition of metaphor. ........................................................................................................ 16   2.2 Self and Identity ............................................................................................................................... 16   2.2.1 Locating self in illness narratives. .............................................................................................. 18   2.3 Metaphor Use in Epilepsy Narratives ............................................................................................ 21   2.4 Conceptualizations of Epilepsy ....................................................................................................... 24   2.4.1 Epilepsy in history. ..................................................................................................................... 24   2.4.2 Epilepsy in biomedicine. ............................................................................................................ 25   2.5 Epilepsy Narrative Research .......................................................................................................... 26   2.5.1 Epilepsy narrative research and stigma. ..................................................................................... 27   2.5.2 Epilepsy narrative research and epilepsy typologies. ................................................................. 29   2.5.3 Epilepsy narrative research: Family perspectives. ..................................................................... 35   ii 2.5.4 Epilepsy conceptualizations: Defining epilepsy. ....................................................................... 36   2.5.5 Epilepsy narrative research: Summary. ...................................................................................... 37   2.6 Epilepsy Narratives and Seizure Metaphors ................................................................................. 37   2.7 Published Epilepsy Narratives ....................................................................................................... 41   2.7.1 Published epilepsy narratives: Changes in epilepsy narrative forms. ........................................ 42   2.7.2 Published epilepsy narratives: Sample metaphors. .................................................................... 44   CHAPTER THREE ..................................................................................................................... 47   Research Design ........................................................................................................................... 47   3.1 Objectives ......................................................................................................................................... 47   3.2 Rationale for Qualitative Methodology ......................................................................................... 48   3.3 Epistemological Assumptions ......................................................................................................... 49   3.4 Metaphor and Narrative Analysis .................................................................................................. 51   3.4.1 Narrative analysis and narrative medicine. ................................................................................ 52   3.5 Recruitment Process ........................................................................................................................ 57   3.6 Participants ...................................................................................................................................... 58   3.7 Data Collection ................................................................................................................................. 59   3.8 Sources of Data ................................................................................................................................ 62   3.9 Data Analysis .................................................................................................................................... 62   3.10 Validity ........................................................................................................................................... 67   3.11 Researcher Background ................................................................................................................ 68   3.12 Significance ..................................................................................................................................... 70   3.13 Introduction to the Analysis: Reclaiming Control ..................................................................... 71   3.13.1 Reclaiming control: Individual concepts. ................................................................................. 72   CHAPTER FOUR ........................................................................................................................ 74   iii Hannah: Epilepsy Roles and “In-Betweenness” ....................................................................... 74   4.1 Meet Hannah .................................................................................................................................... 74   4.2 The Revolving Door of Epilepsy ..................................................................................................... 76   4.3 Hannah’s Social Seizure Narrative: Witnesses ............................................................................. 78   4.3.1 First seizure, first witnesses: “I couldn’t control it.” .................................................................. 79   4.3.2 Witnessing oneself: “It’s my warning sign.” ............................................................................. 80   4.3.3 Witnessing others: “I’ll just keep it separate from me.” ............................................................ 82   4.3.4 The witness framework. ............................................................................................................. 83   4.4 Hannah’s Physical Seizure Narrative: Mind-Body Separation .................................................. 85   4.4.1 The “malfunctioning” body. ....................................................................................................... 86   4.4.2 Getting in touch with the body. .................................................................................................. 87   4.4.3 Mind and body: Holding energy. ............................................................................................... 88   4.4.4 Mind and body: Releasing energy. ............................................................................................. 90   4.5 Beyond the Witness: Epilepsy Identities ....................................................................................... 91   4.5.1 A victim. ..................................................................................................................................... 92   4.5.3 A mother. .................................................................................................................................... 95   4.5.4 A healer: Western and Eastern medicine. .................................................................................. 96   4.6 Transitional States ........................................................................................................................... 99   4.6.1 Liminality and seizures: Light and darkness. ........................................................................... 101   4.6.2 Liminality and epilepsy: “a potential storm.” .......................................................................... 103   4.6.3 The liminal element: An “engrained” epilepsy identity. .......................................................... 103   4.7 Conclusion: Living “in-between” ................................................................................................. 105   CHAPTER FIVE ....................................................................................................................... 108   Clark: Mechanics, Saviours, and Captain Epilepsy ............................................................... 108   5.1 Meet Clark ...................................................................................................................................... 108   iv 5.2 Epilepsy: Mechanical Versus Spiritual Interpretations ............................................................. 109   5.3 Clark’s Seizure Narrative: Solving the Mystery ......................................................................... 111   5.4 The Mechanical Self: Fixing a Broken Brain .............................................................................. 113   5.4.1 Doctorese: “They’re just mechanics…” ................................................................................... 116   5.5 The Spiritual Self: Epilepsy As a Religion .................................................................................. 118   5.5.1 The epiphany. ........................................................................................................................... 119   5.5.2 A saviour. ................................................................................................................................. 120   5.5.3 A preacher: Captain Epilepsy. .................................................................................................. 123   5.5.4 Fellowship: Summer camp and surgery. .................................................................................. 125   5.5.5 Preaching to the congregation. ................................................................................................. 127   5.5.6 Preaching to the public. ............................................................................................................ 129   5.5.7 Empowerment: Sacrifices made. .............................................................................................. 131   5.6 Conclusion: Finding the Winning Team ..................................................................................... 135   CHAPTER SIX .......................................................................................................................... 139   Cam: Epilepsy and Time ........................................................................................................... 139   6.1 Meet Cam ....................................................................................................................................... 139   6.2 Cam and Time: Past, Present, and Future .................................................................................. 141   6.3 Cam’s Seizure Narrative: “Before and After Was Just a Continuum” ................................... 142   6.4 The Original Cam: First Impressions .......................................................................................... 145   6.5 Cam and Epilepsy: The Medical Opinion ................................................................................... 147   6.6.1 Consistent Cam: Social interactions. ........................................................................................ 150   6.6.2 Consistent Cam: Workplace. .................................................................................................... 151   6.7 Medicated Cam .............................................................................................................................. 153   6.7.1 Medicated Cam: The zombie effect. ........................................................................................ 153   6.7.2 Medicated Cam: Fuelling the fire. ............................................................................................ 155   v 6.8 Back to the Old Cam: Removing Epilepsy .................................................................................. 157   6.8.1 Getting rid of seizures. ............................................................................................................. 158   6.8.3 Getting rid of Epilepsy. ............................................................................................................ 160   6.9 A Different Cam ............................................................................................................................. 161   6.10 Conclusion: Living In the Now ................................................................................................... 163   CHAPTER SEVEN .................................................................................................................... 166   Rose: Boundaries of a Safe Space ............................................................................................. 166   7.1 Meet Rose ....................................................................................................................................... 166   7.2 Epilepsy As a Struggle for Social Control Over Time ............................................................... 168   7.3 Rose’s Seizure Narrative: The Face in the Mirror ..................................................................... 169   7.4 Social Control: “You Lose Control of… Who You Are” ........................................................... 173   7.4.1 Family secrets. .......................................................................................................................... 174   7.4.2 Social rules: “Make light and move on.” ................................................................................. 177   7.5 Social Control: Defining Seizures ................................................................................................ 179   7.6 Social Boundaries .......................................................................................................................... 184   7.6.1 Building a safe nest. ................................................................................................................. 187   7.7 Social Control and Medication: The “Fix-It” Attitude .............................................................. 190   7.8 Conclusion: The Last Boundary .................................................................................................. 197   CHAPTER EIGHT .................................................................................................................... 200   Grace: Listening to the body ..................................................................................................... 200   8.1 Meet Grace ..................................................................................................................................... 200   8.2 Epilepsy As a Loss of Physical Control ....................................................................................... 202   8.3 Grace’s Seizure Stories: “Threatening the Status Quo” ............................................................ 202   8.3.1 First seizure narrative: “It would go away.” ............................................................................ 203   vi 8.3.2 Second seizure narrative: “It’ll stop.” ...................................................................................... 204   8.3.3 Seizures: The invisible bully. ................................................................................................... 206   8.4 Diagnosis: Hearing the Un/Spoken .............................................................................................. 209   8.4.1 Neurologist One: Fits and electricity. ...................................................................................... 210   8.4.2 Neurologist Two: Seizures and “the other stuff.” .................................................................... 211   8.4.3 Neurologist three: Getting “on even footing.” ......................................................................... 213   8.5 Physical Control: A Body “Consumed” ...................................................................................... 214   8.5.1 Physical control: Battling an external entity. ........................................................................... 216   8.6 Perceived Stigma: A Public Affair ............................................................................................... 218   8.6.1 Perceived stigma and culpability: “I didn’t do it.” ................................................................... 219   8.7 Physical Control and the Lifecourse: “Drifting” ........................................................................ 222   8.8 Enacted Stigma: A Consequence of Invisibility .......................................................................... 226   8.9 A Second Diagnosis: “Here We Go Again” ................................................................................. 227   8.10 Conclusion: Hearing the Body .................................................................................................... 229   CHAPTER NINE ....................................................................................................................... 231   Shared Conceptualizations of Epilepsy and Control .............................................................. 231   9.1 Returning to the Literature .......................................................................................................... 231   9.1.1 Epilepsy and control. ................................................................................................................ 232   9.1.2 Metaphors and control. ............................................................................................................. 234   9.1.3 Control in the current study. ..................................................................................................... 235   9.2 Analytic outcomes: Individual voices, common threads ............................................................ 236   9.3 The “Witness”: Metaphors of Identity ........................................................................................ 237   9.3.1 Witness roles and control. ........................................................................................................ 240   9.4 “Mechanics” Versus “Saviours”: Metaphors of the Mechanical-Spiritual Divide ................. 241   9.4.1 Mechanical and biomedical metaphors and control. ................................................................ 242   vii