Seizure Frequency

Smith, Niall (2013) The everyday social geographies of living with epilepsy. PhD thesis. http://theses.gla.ac.uk/4696/ Copyright and moral rights for this thesis are retained by the author A copy can be downloaded for personal non-commercial research or study, without prior permission or charge This thesis cannot be reproduced or quoted extensively from without first obtaining permission in writing from the Author The content must not be changed in any way or sold commercially in any format or medium without the formal permission of the Author When referring to this work, full bibliographic details including the author, title, awarding institution and date of the thesis must be given Glasgow Theses Service http://theses.gla.ac.uk/ [email protected] THE EVERYDAY SOCIAL GEOGRAPHIES OF LIVING WITH EPILEPSY NIALL D. SMITH THESIS SUBMITTED FOR THE DEGREE OF DOCTOR OF PHILOSOPHY SCHOOL OF GEOGRAPHICAL AND EARTH SCIENCES UNIVERSITY OF GLASGOW JUNE 2013 ABSTRACT Radical, ‘eventful’ bodily vulnerability has yet to receive sustained attention in contemporary human geography. As one way of addressing the implications of existential vulnerability, this thesis explores the social geographies of people living with epilepsy. It draws upon multiple- methods research comprising an extensive mixed-methods questionnaire and semi-structured interviews, all conducted with people with epilepsy who are members of the charity, Epilepsy Scotland, the project partner. By paying attention to the (post-)phenomenological experience of ‘seizures’, the thesis argues that a failure to appreciate the complex and often extremely troubling spatialities of epileptic episodes invariably results in sustaining the stigmatisation of epilepsy and the partial views of ‘outsiders’. By exploring changed, changing and changeable relations between self, body, space, time and others, the thesis suggests that spatial behaviours in and across different places shift according to various biographical, social and illness experiences and contexts. More specifically, it contends that certain spaces become risky some or all of the time because of the body that not only threatens personal disorientation but also the very foundations of the social order. While there is a corresponding risk that individuals with epilepsy will confine themselves within the socially (although not materially) contained homeplace, many adopt active and resourceful practices, taking into account immediate time-space and embodied knowledges so as to resist being told what they can do, where and when. Disciplining the ‘epileptic body’ and environment to accommodate the unpredictability of seizures are put forward as a challenging case study for thinking through how the vital vulnerabilities of everyday life are made sense of through the very governmental regimes that they will always escape. ii CONTENTS LIST OF FIGURES AND TABLES ....................................................................................................... v ACKNOWLEDGEMENTS ................................................................................................................ vi AUTHOR’S DECLARATION .......................................................................................................... viii LIST OF ABBREVIATIONS .............................................................................................................. ix CHAPTER ONE: ............................................................................................................................. 1 INTRODUCTION: PLACING EPILEPSY CHAPTER TWO: .......................................................................................................................... 16 LITERATURE REVIEW: WHERE DOES EPILEPSY ‘FIT’? CHAPTER THREE: ........................................................................................................................ 46 KNOWING ‘ILL’ BODIES THROUGH MULTIPLE METHODS CHAPTER FOUR: ......................................................................................................................... 77 THE PHENOMENOLOGY OF PAROXYSMAL BODY EVENTS: SEIZURE TIME-SPACES CHAPTER FIVE: ......................................................................................................................... 100 EMBODYING (THE POTENTIAL FOR) DISORDER: THE ANARCHIC BODY IN SEIZURE CHAPTER SIX: ........................................................................................................................... 132 THE ‘LIFE AND TIMES’OF LIVING WITH EPILEPSY CHAPTER SEVEN: ...................................................................................................................... 164 DISCIPLINING FAMILIAR AND ITINERANT SPATIALITIES CHAPTER EIGHT: ....................................................................................................................... 197 FINDING ONE’S ‘WAY’ WITH EPILEPSY: A VITAL POLITICS OF EVERYDAY LIFE CHAPTER NINE: ........................................................................................................................ 227 CONCLUSION: RE-PRESENTING THE ‘EPILEPTIC BODY’ REFERENCES ............................................................................................................................. 238 iii APPENDICES APPENDIX 1: QUESTIONNAIRE COVER LETTER ............................................................................... 267 APPENDIX 2: POSTAL QUESTIONNAIRE .......................................................................................... 269 APPENDIX 3: ONLINE QUESTIONNAIRE SCREENSHOTS .................................................................. 281 APPENDIX 4: QUESTIONNAIRE DESCRIPTIVE RESULTS ................................................................... 282 APPENDIX 5: INTERVIEWEES BREAKDOWN .................................................................................... 288 APPENDIX 6: SEMI-STRUCTURED INTERVIEW SCHEDULE .............................................................. 291 APPENDIX 7: NVIVO SCREENSHOT ................................................................................................. 294 iv LIST OF FIGURES AND TABLES FIGURES Figure 1: Auras and Action ................................................................................................................ 89 Figure 2: The Significance of where a seizure occurs ..................................................................... 104 Figure 3: Comfort with different witnesses to a seizure ................................................................ 106 Figure 4: Comfort talking about epilepsy with different people .................................................... 109 Figure 5: Simultaneous Temporalities ............................................................................................ 134 Figure 6: Dynamics of the lifecourse following diagnosis (Wilton 1996: 77) ................................. 143 Figure 7: SIGN Guidelines for ‘information to be discussed with patients and carers’ .................. 201 Figure 8: Seizure diary..................................................................................................................... 217 TABLES Table 1: Piloting Feedback ................................................................................................................ 54 Table 2: Relationship between experiencing seizures and concealing epilepsy .............................. 57 Table 3: Contingency Table Displaying Observed and Expected Counts .......................................... 57 Table 4: Relationships between variables ........................................................................................ 59 Table 5: Interviewee Demographic Information .............................................................................. 72 Table 6: Seizure classifications .......................................................................................................... 94 Table 7: Seizure Frequency ............................................................................................................. 146 Table 8: How much does epilepsy impact on your normal socialising with family, friends or groups? ........................................................................................................................................... 147 Table 9: How often does epilepsy impact on the types of work (paid or voluntary) you are able to do? .................................................................................................................................................. 152 Table 10: How safe are the following places relative to the possibility of having a seizure? ........ 180 Table 11: Feelings of safety on a bus .............................................................................................. 191 v ACKNOWLEDGEMENTS Sitting in my usual chair, which long ago lost any semblance of comfortability (it now resembles a cushion-built Frankenstein’s monster), I now face up to the very real and imminent threat of life beyond the PhD. It’s strange how what initially seemed like a long time to complete one research project has passed so quickly; and yet the matter of days until I finally submit this thesis seem like both an eternity and, worryingly, no time at all. I anticipate feeling a bit lost for a while because, even though I will be happy to submit, I have grown accustomed to these long writing sessions. Hell, I might even enter the outside world for something other than milk. Living and working from my flat in Edinburgh, but attending the University

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