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MEANING-MAKING IN CHRONIC DISEASE: A QUALITATIVE STUDY OF HOW ADULTS WITH EPILEPSY CREATE A MEANINGFUL CONCEPT OF ILLNESS

by

Maureen Theresa Gatt

A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Clinical Psychology

Institute of Transpersonal Psychology Palo Alto, California December 5, 2008

I certify that I have read and approved the content and presentation of this dissertation:

Jenny Wade, Ph.D., Committee Chairperson

Date

Ursula Velonis, Ph.D., Committee Member

Date

Kevin Krycka, Psy.D., Committee Member

Date

3336644 Copyright 2008 by Gatt, Maureen Theresa All rights reserved

2008

3336644

Copyright Maureen Gatt 2008 All Rights Reserved

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Abstract Meaning-Making in Chronic Disease: A Qualitative Study of How Adults With Epilepsy Create a Meaningful Concept of Illness by Maureen Theresa Gatt This narrative study proposed to identify structures and concepts of meaning that constitute the elements of an evolving identity in the context of living a life disrupted by epilepsy, a chronic illness with sometimes devastating psychosocial sequelae. Temporal Lobe Epilepsy (TLE) or any temporal lobe and limbic system involvement in epilepsy can cause significant alterations in consciousness; the seizure experience may cover the spectrum from total blackout to mystical experience. Using a one-on-one semi-structured interview of up to 2 hours in length, 6 adults who met criteria intended to represent mainstream Americans living with epilepsy told their stories of diagnosis and of living with epilepsy over time. Narrative analysis was used to identify meaning concepts found throughout interview transcripts; from the constellation of these a further level of analysis identified structures of meaning. Each participant demonstrated one essential meaningmaking structure that persisted over time; 2 participants appeared to share the same structure. Qualities of identity were not linked to specific structures of meaning-making, but were an impetus in processes of transformation within meaning-making structures. Unique variables in the experience of epilepsy are seizure content and control. Age of onset and degree of seizure control can impact the content of the meaning-making process. The findings may generalize to others with chronic illness and suggest the utility

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of employing meaning-making structures in a therapeutic context to help with stress reduction and possibly the reduction of seizures, especially for those individuals capable of self-observation. This last possibility holds implications for spiritual transformation in the experience of epilepsy and points to the process of integration of mind, body, and spirit that is at the heart of transpersonal psychology. Further research might test the clinical utility of these preliminary findings, explore whether a finite number of meaningmaking structures exist, develop a more distinct picture of each one, and seek to identify processes of transformation specific to each structure.

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Acknowledgements What a journey! I have had so much support and guidance and love it hardly seems that a few words on this page might capture it. This simply outlines the considerable contingent without whom I would not have undertaken this research or, for that matter, graduate school. I will start with the accomplishment of this dissertation. I had no idea what gift I was receiving in my Chair, Jenny Wade. Her consistent insight, knowledge, and clear and marvelously prompt guidance brought my writing and my research process to a level I did not know was in me. Similarly, the support from Ursula Velonis and Kevin Krycka was equally positive and insightful; my entire committee was there for me when I thought all was lost and doubted this project. In addition, the Dissertation Department at ITP: Genie Palmer, who patiently guided me and encouraged meand whose discernment brought me to my committee; and Amy Sharp, who always responded to e-mails with just the right information and cheer. Mary, my editor: your work is stupendous, your humor just right, and your hospitality beyond measure. And finally, the participants who are the heart and soul of this study: Thank you. My dear friends, Jayne and Rubye, without whom my journey through graduate school and the dissertation process would have been lonely indeed. I trust our friendship will support us for a very long time. To Helen, whose love and support is such a treasure to me: well-timed and such artful, clear advice; patience to listen; warmth of heart and presence. Thank you for introducing me to the narrative method.

Grace, my daughter, and Gerry, her dad: thank you from the bottom of my heart. I had no idea how much your support would mean, and how much I was asking from you. Thank you. My parents, John and Maryann. You have always supported me and loved me. Graduate school would not have been possible without you, in so many ways. God bless you both. So many others who are here with me: my brothers and sisters, especially Greg; my friends who ask me how things are going; there have been so many who have brought me here, I thank you all.

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Table of Contents Abstract .............................................................................................................................. iii Acknowledgements..............................................................................................................v Chapter 1: Introduction ........................................................................................................1 Chapter 2: Literature Review...............................................................................................7 The Psychological Context for Meaning and Identity ............................................ 7 Meaning-Making and Identity in Chronic Illness................................................. 10 Meaning and Identity in Epilepsy ......................................................................... 17 Transpersonal Psychology and Spiritual Phenomena in Epilepsy........................ 27 Conclusion ............................................................................................................ 35 Chapter 3: Methods............................................................................................................38 Narrative Analysis ................................................................................................ 43 Issues of Validity and Reliability.......................................................................... 45 Sampling Criteria .................................................................................................. 46 Recruitment Process.............................................................................................. 50 Screening Instruments and Selection Process....................................................... 51 Collection of Data ................................................................................................. 54 Treatment of Data ................................................................................................. 55 Chapter 4: Results ..............................................................................................................58 Sampling Issues .................................................................................................... 58 Demographic Information..................................................................................... 59 Data Analysis ........................................................................................................ 61 Barbara.................................................................................................................. 64 Anna.................................................................................................................. 75 Bill..................................................................................................................... 86

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David................................................................................................................. 92 Margaret................................................................................................................ 99 Monica ................................................................................................................ 105 Conclusion .......................................................................................................... 114 Chapter 5: Discussion ......................................................................................................116 Concepts and Structures of Meaning .................................................................. 116 Implications for Meaning-Making in Epilepsy................................................... 120 Implications for Transpersonal Psychology........................................................ 124 Methodological Considerations and Qualifications............................................ 127 Recommendations for Future Research .............................................................. 131 Conclusion .......................................................................................................... 132 References........................................................................................................................134 Appendix A: Statement of Advertising Content..............................................................144 Appendix B: Demographics Questionnaire .....................................................................145 Appendix C: Consent Form .............................................................................................146 Appendix D: Interview Protocol......................................................................................148

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1 Chapter 1: Introduction Illness, lasting physical consequences of illness, and chronic disease constitute an interruption to life, a disruption in sense of identity, a disruption in the self-narrative and therefore of meaning. This crisis demands a new story of who I am that incorporates the imposition of the illness experience into a new evolution of self or identity (Bury, 2002; Polkinghorne, 1991). Disruption can happen in many life contexts: divorce, unemployment, sickness, death of a loved one, birth of a child. Disease has a general hallmark of a beginning, some point at which subjective experience and conceptualization of self or identity is definitively disrupted and out of the ensuing chaos a new person must emerge (Wikan, 2000). In chronic disease a fundamental shift in the context of meaning-making and in identity is necessary in order to incorporate the illness experience through all the stages and events of life (Bury, 2002; Mattingly, 2000): people are propelled to change their view of themselves and their relationships to society and spirituality or some larger purpose in life (Delmar et al., 2005). Chronic disease can alter persons views of themselves (Bury, 2002; Cardillo, 2005; Sander, 2005; Sedman, 1966). In this research the impact of chronic disease in general, and epilepsy in particular was considered. Epilepsy is a disease which appears in the written record of the Western world for more than two thousand years (Temkin, 1971). It is a disease that has been and often still is fraught with both positive and negative superstition and stigma. Epilepsy also presents an enormous range of subjective experience along a continuum that runs from complete blackout to mystical phenomena. The experience of epilepsy can provide significant challenges to the individuals sense of meaning (Faircloth, 1998); construction of

2 meaning can occur in a negative and challenging personal and cultural context. The etymological derivation of epilepsy reflects this: It comes from the Greek epilambanein, to seize (Merriam-Webster, Inc., 2005). The notion of epilepsy as being seized by the gods is still prevalent around the world to this day (World Health Organization [WHO], Rev. 2001b). Even though approximately 0.5 to 2.0% of all people will develop epilepsy in their lifetimes (Schachter, 2004), stigma and prejudice are still the norm rather than the exception (Austin, 2003; Sander, 2005). Developing meaning for a person with epilepsy can take on additional urgency. In addressing this matter the psychological literature is notably silent, even though epilepsy brings relevant and particular challenges due to both stigma and the typical co-morbidity of psychological disorders. This research is a small contribution towards educating practitioners and documenting the structure, process, and content of making meaning in the context of epilepsy. Epilepsy is a neurological disorder; the World Health Organization (Rev. 2001a) explains, Seizures are the result of sudden, usually brief, excessive electrical discharges in a group of brain cells (neurones) [sic] and that different parts of the brain can be the site of such discharges (online). A seizure is also known as an ictus or ictal event. Epilepsy that originates in a specific part of the brain, a focal epilepsy, is called by the name of that area, such as temporal lobe epilepsy (TLE), which originates in the temporal lobe(s)right, left, or both (bitemporal). TLE is associated with a range of psychic experiences, especially illusions, hallucinations, dyscognitive states, and affective experiences (Adams, Victor, & Ropper, 1997, p. 321). TLE is the most commonly occurring type of epilepsy. The variety of psychic and affective phenomena associated with TLE in particular is likely due to its immediate proximity to the limbic system,

3 which is, broadly speaking, the brains emotional circuitry. Some of the observed high co-morbidity of psychiatric disorders among individuals with epilepsy are likely due to the effort to deal with a chronic disease; some are the effectslikely exacerbated by the experience of psychic and affective phenomenaof the seizures on the brain and the central nervous system (Adamec, 2000; Blumer, 1999; Blumer, 2002; Gibbs, 1997; Kalynchuk, 2000). There are many kinds of epilepsies and seizures. The International League Against Epilepsy (ILEA) has recently proposed a five axis diagnostic system and changed terminology that is regarded as misleading or outmoded (ILEA, 2007a). Because this study specifically looked at adults processes of meaning-making through their subjective experience of seizures and epilepsy, the most suitable approach was to provide a general definition. Epilepsy is defined as a disorder of the brain characterized by an enduring predisposition to generate epileptic seizures and by the neurobiologic, cognitive, psychological, and social consequences of this condition (Fisher et al., 2005, p. 470). This definition implicitly recognizes that the appearance of any syndrome, seizure, or focalization will manifest uniquely in each individual, even though a similar course of pathological development may exist. Certain epileptic seizures do not require a diagnosis of epilepsy: benign neonatal, febrile, or reflex seizures; alcohol withdrawal or other drug or chemically-induced seizures; immediate and early post traumatic seizures; single or isolated clusters of seizures; and rarely repeated seizures (ILEA, 2007b). Of the epilepsies specific to childhood, some resolve as the child develops and are not chronic conditions. This study was limited to people with ongoing or chronic epilepsy, people who will most likely live with the disease for the rest of their lives.

4 Medically the goal of treatment is seizure control with no side effects (Fisher et al., 2000). Approximately 60 to 70% of people with epilepsy in developed countries have their seizures controlled through any combination of medication, surgery and other alternatives (Austin, 2003). However, even if the epilepsy is treatment responsive, it may still involve psychosocial sequelae (Blumer, 2002; Gibbs, 1951/1997; Glosser, Zwil, Glosser, OConnor, & Sperling, 2000). This is true even when surgery removes the source of seizures: tumor, lesion, and so on. As medical technology and interventions enable increasing numbers of people to live longer and generally with fewer limitations in chronic diseases than in the past, how individuals make sense out of their experience, how they make meaning and thereby develop a new and coherent concept of self that has the potential to assist them in living a fuller life is becoming increasingly relevant to explore. Making meaning invites the personal and the particular: the stories told to self, to others, and to society. Bruner (1987) posited that telling about their lives is peoples process of constructing them, interpreting them for someone else; narrative gives meaning, purpose, and coherence to the routine of daily life and to the larger events that randomly cross it (Bruner, 1987; Faircloth, 1998; Polkinghorne, 1991; Riessman, 1990). Who I am is a constructed and conceptual process that provides meaning by holding and weaving the discontinuous bits of experience into a whole (Faircloth, 1998; Mattingly, 2000). Because narrative is a cognitive process, the words that identify meaning within a narrative are conceptualizationsan interpretation of the experience of meaning (Polkinghorne, 1991). Narratives are told within a specific context of persons, place, culture, and time and reflect the narrators creation of self and identity. The

5 narrative method acknowledges and accounts for the relevance and embeddedness of the narrative within these contexts (Faircloth, 1998; Kvale, 1996; Maxwell, 2005; Murray, 2000; Riessman, 1993). Faircloth (1998) encapsulated the experience of epilepsy as polysemic, pointing out that each experience of epilepsy offers a unique course of the disease with particular life contingencies and sets of changing meanings from individual to individual. The unpredictability and degree of loss of control implicit in epilepsy (Caplan, 2005; Gehlert, 1996) and epilepsys myriad other effects become woven into narratives that address the human need to author a life. In the context of health and illness, Michael Murray (2000) looks to emancipatory narratives: narratives that reflect self-expression rather than the larger social relations. Self-expression could be reflected as meaning or not-meaning and will always serve the individuals access to society and culture. The integration of the experience of mind and body, of personal and transpersonal, are core to transpersonal psychology (Davis, 2003). Transpersonal psychology is concerned with the deeply human, with embodiment and selfhood situated in communal and spiritual contexts. It allows a perspective that can explore the potential for positive or negative personal transformation in the meaning-making process, the experience of transcendence, and the possibility of incorporating these experiences into a deeper, more coherent story of who I am. In the developed world, the experience of living with epilepsy has changed over the last several decades through the development and availability of increasingly sophisticated medical and pharmaceutical technology. However, the basic divides between mind and body and what is health and what is pathology remain. Creating

6 meaning is one potential bridge to cross this divide, beginning to provide for the individual a tool that might facilitate the experience of living a whole human life (Bury, 2002). Given the range of subjective experiences manifested by the illness, epilepsy is a natural vehicle for transpersonal psychologys emphasis and value on exploring the heights and depths of human experience and how a person might integrate, well or not, these experiences into his or her life (Helminiak, 1984). The stories generously shared by the participants in this study were analyzed using narrative methodology. Concepts of meaning and meaning-making structures and processes were revealed. These results have practical implications for the therapeutic environment and treatment compliance; clinical studies are needed to test the efficacy of any practical application. Though the instance of epilepsy offers some unique variables, the results of this study may well be useful for other chronic illnesses. In addition, the results indicate theoretical possibilities for the study of meaning in general and for psychological research devoted to human potential and transformative mechanisms. Questions are raised regarding the range and adaptive capacity of meaning-making concepts and structures across populations and cultures. These positive outcomes and further questions will hopefully become a small source of more significant research and a growing avenue of education for any person who encounters or works with people with epilepsy.

7 Chapter 2: Literature Review The process of meaning-making emerges from a sense of self or identity. In the context of Western culture, the construct of self as an individual instrument came to prominence through the humanistic movement. This chapter will explore the psychological context of meaning-making and identity that arose initially in the humanistic amalgamation of existentialism, individuated personhood, and social change. Once the context is established, the particular issues of meaning-making in chronic illness and then epilepsy will be examined. Finally, these issues will be explored through the lens of transpersonal psychology, noting the limitations of the current literature. The Psychological Context for Meaning and Identity Modern psychology picks up the questions of meaning, self, and identity most notably in the humanistic movement. Three significant voices that advocated for stepping back from the pathological view of human behavior to a more holistic view were Abraham Maslow (1908-1970), Carl Rogers (1902-1987), and Rollo May (1909-1994). Maslow (1968/1999) stressed the centrality in psychology of subjectivity and the concept and experience of identity. Emphasizing the subjective over the objective of the scientific paradigm was a radical shift. Carl Rogers (1951), who advanced the theory and practice of person-centered psychotherapy, espoused a perspective that considered the basic goodness and wholeness of a person primary. Rollo May (1961) took a more explicitly existential approach and named personal and social interactions as central to identity and the focus of psychological study and clinical practice. Looking towards an ideal development of healthy persons, Rogers (1980) stated that the divisions and separations of body and mind, health and unhealth, intellect and

8 feeling, science and common sense (pp. 350-351) are contrary to human nature which yearns for a more whole experience of life. He followed this logic to assert that each subjectivity also desires to find meaning and coherence in the larger social body. Rogers (1951) was very specific in naming the source of meaning as perception of reality, not some absolute or objective reality which does not exist in the experience of an individual. Out of perceptions arise new aspects of self. This new sense of identity and meaning, requiring a new perception of reality, is, in Rogers eyes, facilitated by the act of telling and experiencing being heard. In framing his theory of personality and behavior, Rogers embraced the notion that the structure of self is formed and organized through interactions, especially with other persons and the process of reflecting on these, creating a changing but consistent conceptual pattern of identity and meaning. This theoretical conceptualization of human growth and identity and similar ones that emerged later describe the process of narrative conceptualization of self and meaning. May (1961) is a representative spokesperson for the conceptualization of meaning and of the self espoused in existential psychology, another facet of the humanistic movement. He differentiated existential psychology from its long history of sometimes contentious philosophical dialogue and emphasized the centrality of the subjective, the necessity of considering context in order for meaning to arise, for making sense of life and existence. He described the subjective world of existence as co-constituted dynamically among meaningful relationships. A sense of being, of an I am experience, is a prerequisite for the positive evolution of this ever-changing reality as well as addressing the historical problem of dichotomous thinking. May was careful to qualify participation in making meaning and developing identity by allowing that people are not

9 responsible for everything that might impinge on their existence, including illness, an experience with which he was personally familiar. He believes that only as destiny is embraced does the capacity of living a more whole life inclusive of freedom and a sense of responsibility arise. May identifies the story of self or identity as a myth, which reinforces this ongoing need to make meaning, and requires perpetual reinterpretation and change. The myth is a context for the emergence of greater meaning (May, 1991). Schneider and May (1995), in the development of existential-integrative psychology, made a more detailed and comprehensive consideration of the environmental and personal contingencies effecting identity and meaning. These included biology, environment, cognition, and social relations (p. 3), as well as the subjective experience of the relationships constituting the world of existence and the potential cosmic elements within and supporting these. Existential psychology confronts the polarities inherent in human existence; concepts of meaning allow holding these polarities with integrity. This theoretical framework strives for facilitating a more full perception of life and its possibilities through an expanding and deepening sense of self and meaning. This idea is an astute development of Maslows (1968/1999) observations of self-actualizing people, from which he concludes the centrality of a well-developed perceptual and reflective capacity in the context of self and the human race. According to Jerome Bruner (1987), narratives structure and predict lives. Polkinghorne (1991) concurred and emphasized that this living process answers the existential question who am I? and compels the creation of an I am story, developing the part-whole relations within a person, between the person and the social, and the person and the cosmological. Taking a similar constructivist view, Bruner observed that

10 the act of narrative is conceptual, a world-making function of mind (p. 11), with the implication that life itself is an interpretation that evolves over time. Disruption of a narrative is a disruption in identity; requiring reconstruction of the I am story. Disruptions are many: divorce, death of a loved one, job loss, illness, birth, among others. Chronic illness is one such disruption. Meaning-Making and Identity in Chronic Illness Polkinghorne (1991) echoed May in the understanding that people are not in control of all that crosses their lives and that it can be an enormous and sometimes insurmountable task to make meaning out of experience, to develop narrative coherence within and across evolving identities. Because persons are living their stories, the outcome is not guaranteed and revision is constantly called for as unforeseen circumstances and interruptions present themselves, including life events people may wish to exclude, for instance, one that induces intense shame or guilt or one that imposes severe limitations. These are points at which the narrative unity begins to unravel and identity is questioned, creating Rogers (1951) circumstance for telling and being heard, Maslows (1968/1999) opportunity for self-actualizing growth, and Mays (1991) embrace of destiny such that the personal myth can incorporate greater meaning. Polkinghorne went so far as to say people do not author their own stories; people narrate their stories, and this process is what creates meaning and identity, the ongoing construction of the self. It is only since the bio-medical model came to prominence in medicine that doctors, generally speaking, no longer take detailed and comprehensive histories of their patients. In the prior era of few effective remedies, the relationship with patients,

11 including enquiring about and listening to their story, was a primary aspect of treatment. As medical understanding of disease grew, the subjectivity of patients mattered less, and the symptoms and facts, more; doctors worked from biological processes to determine diagnoses and outcomes (Bury, 2001). No longer are reports heard such as was given to the parents of an adolescent boy in 1929: Their doctor told them that his was a form of epilepsy which was a common affliction for those with extraordinary imagination, stormy temperaments, and strange insights into human behavior. I should think of it not as a badge of infamy, or a handicap, but a gift which I might treasure, and turn to advantage. (Lisyak, 1994, p. 1953) Bury (2001) observed that the shift from subjective and narrative to objective and factual tended to promote passivity; as illness became a professional matter removed from everyday life, the subjective voice of patients and their suffering were effectively silenced. In the more recent emphasis on disease management rather than cure, the lived context reemerges and subjective perception and its narration join the social discourse. Bury identified a new role of the physician as witness, guide, and advisor. The social discourse has also changed, including narrations that mix both biological and subjective stories of disease onset and process. Out of this discourse and the need to make meaning from the disruption, a darker side sometimes emerges such that people feel morally responsible, as if they had failed somehow in getting the disease or by coping with it inadequately. This can be devastating in a culture wherein success must be achieved in every life endeavor, even illness. Speaking from a feminist constructivist view in consideration of mental illnesses, Brown (2000) related that some of the distress arising from disorders originates in the manner of cultural response. Normal capacities are more highly valued than that which is other. The cultural response of naming the experiences of others enables a certain

12 social power over these others. In considering the conflict that disorders bring to interpersonal relations, Anderson (2004) stated, If the intensity of the narrative conflict is too great for the community of characters, there will be repercussions for those characters that have disrupted the balance (p. 318). Anderson elaborated the most likely consequence of creating disruption as a communal recoiling from the destabilization and pressuring the offending characters back into place (p. 318); if the persons are changed through the experience of chronic illness, they may not have a cultural place. A non-conforming narrative fails to build acceptable social and cultural meaning. In a process-oriented view of cultural construction, meaning-making frameworks are interpretive resources for addressing daily social experience. When these resources fall short, there may not be the flexibility to reach for a new story context that can integrate the demanding event without disowning its participants. The understandings developed by these individuals reflect the cultural process (Garro, 2003). When part of this understanding is stigma, identity and narrative are undermined. Charmaz (2002) pointed to the partitioning of life and the methods people use to modulate their presentation, especially after experiencing alienation and the sting of diminished moral status (p. 308). The moral and social impact of illness not only plays into the construct of stigma (Kleinman & Benson, 2006; Yang et al., 2007), but also constitutes one dimension of the subjective experience of chronic illness (Kleinman & Fitz-Henry, 2007; Kleinman & Seeman, 2000). Using the concept of stigma as a social, interpretive, and cultural process, the threat against the self or identity is at its core. Yang et al. (2007) noted that the aspects of identity under attack reflect the persons experience of moral-somatic or

13 physically-linked values, and the moral-emotional or emotionally-linked values (p. 1530). The collective pattern of meaning-making and the collective trove of experience are an unavoidable part of an individuals perception and experience of illness; an individual is hostage to the culturally-determined value and meaning of the illness experience (Kleinman & Seeman, 2000). Kleinman and Benson (2006) argued that the cultural representation of suffering and illness has become a technical condition, a consequence of which is removing the experience of illness from the experience of being human. Illness is universal and arguably one of the core aspects of being human. In handing illness over to a biomedical body, the aesthetic, moral, and emotional meaning [of the illness experience] is purged, and the social world of illness is made into abnormality and foci for treatment (p. 836). The disease stands between a person and engagement in the world. Ware (1999) went more deeply into the specific qualities of socially-situated distress encountered by chronically ill people. These qualities are found along a continuum of marginality (p. 305) where people with chronic illness have been pushed through each inability to meet standards of social and cultural life. Ware saw this relegation to the periphery as a methodical social process that threatens the identities of the chronically ill. She identified four aspects of this process: role constriction, delegitimation, impoverishment, and social isolation. Kleinman et al. (1995), also exploring the social course of chronic disease, considered the impact of epilepsy on family, marriage, financial, and moral functions. In addition to stigma and delegitimation, sociosomatic process and the cultural ontology of suffering are also cultural imprints on the subjective experience of chronic illness. The multi-dimensional social, cultural, and

14 spiritual contexts of chronic disease are a compelling and possibly overwhelming influence on and experience of the narrated process of identity and meaning-making. The negative social and cultural context can be mitigated through personal transformation and the deepened perceptual lens that transformation implies. Spiritual transformation, hope, personal control, positive social supports, and meaningful engagement in life can assist in creating a new self-story, an expanded and deepened sense of self (do Rozario, 1997). Locus of control, stories of how and why illness manifested (e.g., karmic endowment, religious gift or punishment, and so on), spiritual support, seeking medical treatment, redefining wholeness and health, among other factors can help renegotiate access to a larger, more whole sense of identity and self, even while these factors are large enough to possibly contribute to a negative and disconfirming experience of identity in chronic illness (de Souza & Salgado, 2006; Fisher et al., 2000; Rty, Sderfeldt, & Larsson, 2007; Velissaris, Wilson, Saling, Newton, & Berkovic, 2007). Considering participants reflections or meaning-making processes regarding reasons they contracted rheumatoid arthritis, Williams (1984) concluded that the meanings contain both a cause and a purpose or function, and that these narratives are reconstructive of identity. The narratives allow living coherently in the present, reaffirming both social and personal context and purpose. Because persons live within a certain culture at a certain time and in a particular social context, conceptualization of meaning out of illness experience will vary accordingly (Bury, 2002). In a narrative study involving cancer patients, Mathieson and Barrie (1998) observed that stories of illness reflect not only who I am with cancer, but also the cultural meaning of health and

15 illness. How individuals place themselves in relation to the social and interpersonal spheres implies much about values and meaning in their lives (Bury, 2002). Michael Murray (2000), following the work of Doise, considered the character of health and illness narratives as a function of the personal, interpersonal, positional, and societal levels of analysis. Murray looked at whether in illness narratives the listener hears self-expression or a mere reflection of societys scripts. He discerned this through the lens of his four levels of analysis. At the personal level stories are a form of selfcare, allowing the re-ordering of a disrupted identity, the act of taking control over the illness, and the development of understanding through this storying process. Drawing from the work of Mishler, Murray identified the interpersonal level as the social microcosm; the narrative in its telling is shaped and reshaped according to the context and nature of the conversation, the felt and spoken reactions which bring the evolving story into sharper focus even as some of its elements fade into the background. The positional level adds a critical dimension to the interpersonal, reflecting differences in social position or power; each narrative is carefully constructed according to perception of these differences and is only understood when this positional context is known. Murray (2000) noted, for example, the differences between narratives reported to physicians in their examining rooms and those obtained by researchers in other contextsthe differences were vast. Who is witnessing the narrative creation, and thereby participating in it to some extent, makes a difference in how people experience themselves. Generally obscured to participants is the ideological level that reflects the cultural assumptions and how they are fulfilled in each society or community. The challenge in listening at this level is hearing how narratives and identities are both

16 affecting and blending into socio-cultural concepts. As was noted by both Polkinghorne (1991) and Bruner (1987, 2002), identity is a narrative concept at the level of self as culture as much as it is at the level of self as individual. Murray pointed out social and communal concepts of illness develop through these dialectic narrations of identity and meaning. The challenge is to hear and balance the interplay of all four levels in any particular narrative. From the perspective of the narrative construction of identity, telling the story is imperative to actively situate the self in its many contexts. This act, however, can challenge the social and communal concepts of illness, making it difficult for the narrator to experience validation, to integrate who I am into the fabric of the larger world. Offering critiques and questions of cultural conceptualizations can become part of the illness narrative as well as add to the larger social discourse of meaning in illness (Murray, 2000). Social psychologist Irvin Goffman (1963) wrote with great clarity and sometimes cynicism regarding how culture and society find their way forward. He examined the concept of stigma at length and defined it first as an attribute that is deeply discrediting, (p. 3) and then qualified it as nested within the language of relationships rather than as a specific attribute of an individual or group. Goffman ultimately described stigma as a perspective and stigmatization as a process: People initially learn societys perspective and then they learn of their possession of spoiled identities unqualified for participation in the social and cultural world. He named a difficult interplay within narrative construction of identity and meaning that reflects Murrays levels of analysis.

17 Meaning and Identity in Epilepsy Goffman (1963) explicitly addressed epilepsy and stigma, describing them as linked since Hippocrates time. He wondered that this is so, given the frequent case of insignificant physical impairment; he identified the source of this stigma as the power of the social over the understandings of medical science. Most cultural perspectives of the Western world were and are full of stigma and superstition. Ancient Babylonian medical texts (cuneiform tablets) indicated specific treatments for each kinds of epilepsy they observed. A few epilepsies were treatable with amulets, potions, and rituals, and some were treatable only by death, so as to remove the curse or the hand of God from the family (Stol, 1993). Hippocrates argued vigorously against this approach in his treatise, On the Sacred Disease, stating unequivocally that epilepsy was no more sacred than any other disease, being the result of natural causes. Hippocrates did not prevail over the momentum of social consciousness and custom, no doubt because the disease remained essentially incurable (Eijk, 1990; Stol, 1993). A few cultures, for example some Siberian tribes and the Hmong, looked to those with epilepsy to become shamans, priests, spiritual leaders, and guides (Fadiman, 1998; Kunanbaeva, 2005; Winkelman, 2004). Others have mixed responses to epilepsy, but primarily negative and limiting ones (Allotey, 2007; Carod-Artal & Vzquez-Cabrera, 2007). Dewhurst and Beard (1970/2003) pointed out some of the more well-known Christian mystics they believe may have had epilepsy. This list includes St. Teresa of Avila, St. Therese of Lisieux, St. Catherine dei Ricci, and Joseph Smith (founder of the Mormon Church). The authors referred to documentation of deepening religious and spiritual experiences and perspectives in these lives which closely resemble epileptic

18 phenomena, allowing that the data are inconclusive. There are other notable historical figures speculated to have had epilepsy (Temkin, 1971). This list includes such diverse characters as Ezekiel (Altschuler, 2002), Swedenborg (Foote-Smith & Smith, 1996), Graham Greene, Dostoevsky, Joan of Arc, St. Paul, and the Prophet Mohammad, among others (sheim Hansen & Brodtkorb, 2003). Two well-known contemporary figures who do have epilepsy are Tony Coehlo, primary author of the Americans With Disabilities Act, and Karen Armstrong, author of several books including A History of God, and Islam, a Short History. Both of these authors lives demonstrate phenomena that may be epilepsy-related and each of them has produced perspective-shifting work. Epilepsy can profoundly affect not only the subjective sense of self and identity but also the perspective on reality and its potential as a gateway to other worlds of meaning, including the spiritual. Briefly reviewing historical literature dating back to the early 19th century, Dewhurst and Beard (1970/2003) found different explanations offered for the common observation of the religiosity of the epileptic; they quoted some terms that could infer religiosity or spirituality: patients with a greater awareness, visual hallucinations of Christ coming down from the sky, a feeling of having been morally wrong before losing consciousness, auras like dreams which seem to come into the mind, and ecstatic states preceding religious visions (p. 78). A frequent occurrence of religious preoccupation is reported in people with epilepsy; in general, patients remain convinced of the authenticity of their religious experiences (sheim Hansen & Brodtkorb, 2003; Dewhurst & Beard, 1970/2003; Helminiak, 1984; Ogata & Miyakawa, 1998; Sedman, 1966; Sedman & Hopkinson, 1966a, 1966b).

19 In reviewing psychological and theological aspects of conversion, Dewhurst and Beard (1970/2003) illustrated the divide between psychiatrists and theologians. Sargant (1969) studied physiological mechanisms believed to underlie religious conversion. He concluded that stressful interruptions of cognitive patterns and behaviors allowed new and suppressed patterns to emerge, the source of which was an inhibition of normal brain functioning, that is a pathological context. Several theologians of the 19th and early 20th centuries named possible factors in conversion experiences as Glossolalia . . . a sense of sin and self-surrender . . . crying, screaming, speaking with tongues, dancing, epileptic movements and cataleptic states . . . a mood of exultation. . . a sense of estrangement from God . . . affection of hearing . . . affection of touch. (Dewhurst & Beard, 1970/2003, p. 85). Dewhurst and Beard proposed that conversion is not caused by the seizure itself but is facilitated by the disinhibition of lower neurological functions and the simultaneous inhibition of the higher functions along with elements of personal background. The perspective of psychiatry tends to dismiss spiritual and altered-states phenomena whereas the theological perspective described here embraces these states as evidence of a spiritual awakening. However, the response of the Church to such phenomena has had a mixed history; people with epilepsy have long been prevented from vowed religious life and during the Inquisition people with epilepsy were burned at the stake as witches (Temkin, 1971). Relative to other diseases, epilepsy carries with it significant social meaning. This can be a burden when the epilepsy is not controlled by medication or when fear of a breakthrough seizure is pervasive and dominating (Dahl, Melin, & Lund, 1988; Goldstein, McAlpine, Deale, Toone, & Mellers, 2003). The social meaning in much of the Western world derives significantly from the fact that people with epilepsy, when not

20 having a seizure, look normal (Caplan, 2005); shame and anxiety around the possibility of a seizure may dominate the personal identity. Most studies and theoretical explorations that describe behavior or personality changes thought to derive from the experience of epilepsy tend to approach the subjects and their observable or spoken experiences through the lens of pathology (Ogata & Miyakawa, 1998; Ozkara, et al., 2004). Even the most widely published approach to de-stigmatize the anecdotally observed facets of personality change rushes to identify a syndrome or an epileptic personality (Bear & Fedio, 1977; Blumer, 1999; Geschwind, 1979) when the reality of the evidence does not point to such a universalizing label (Devinsky & Najjar, 1999; Tebartz van Elst et al., 2003). Such changes tend to be figuratively placed on people with epilepsy rather than identified as a perspective shift, a reconstruction of identity and meaning on the part of individuals and how they subjectively engage every level of narrative outlined by Murray (2000). In a reflective article, an Australian physician mused about his personal experience of epilepsy and its effect on self-perception (Lisyak, 1994). He wondered about the appropriateness of the cultural and sometimes personal encouragement and demand to be normal when the reality is constant disruptive events that alter lifes patterns. He addressed the day-to-day reality of epilepsy through enlarging his life narrative to include happiness as an anticonvulsant (which is reported in the literature, e.g., Fenwick, 1998), and then added that self-understanding can serve the same purpose by simply recognizing the great range of affective experiences thrust upon persons with epilepsy and understanding that even with necessary limitations these experiences present new possibilities as well.

21 The subjective experience of seizures can be positive, negative, both, or blackout; all of these states can be experienced in one episode. One 38-year-old woman experienced intense and ecstatic out of body experiences, which she did not doubt were important aspects of her subjective experience of self and identity (Vuilleumier, Despland, Assal, & Regli, 1997). Others experience an unusual vividness to visual experience (Johanson, Revonsuo, Chaplin, & Wedlund, 2003), a quality often associated with mystical experience. Harriet Tubman, after a serious blow to her head, had many experiences likely due to epilepsy. She was already ensconced in a community of believers, but immediately following her injury manifested spiritual changes: She experienced an explosion of religious enthusiasm and vivid imagery . . . and broke out, often unexpectedly, into loud and excited religious praising. If this injury caused her great suffering, it also marked the beginning of a lifetime of potent dreams and visions that, she claimed, foretold the future. . . . [She also reported] bright lights, colorful auras, disembodied voices, states of tremendous anxiety and fear alternating with exceptional hyperactivity and fearlessness, and dreamlike trances while appearing to be conscious. (Larson, 2003, p. 43) Tubman lived in a community where her experiences, public and private, fit into a perceptual lens that accepted as a gift these deeply spiritual and visionary experiences. Larson (2003) situated Tubmans experience in the context of temporal lobe epilepsy, but stated, It is important to view the two, her illness and her spirituality, as perhaps symbiotic (p. 381). Tubman herself experienced her spiritual and personal growth, as well as the physical handicap of multiple daily seizures, to be essential to her identity and purpose in life. Karen Armstrong (2004) wrote vividly of her own experience: But just after I had gone through the ticket barrier, it hit me: the smell, the acrid taste, the flickering quality of the light, and the terror. . . . I was dimly aware of lurching around, trying to get away from somethingbut from what? I grasped the railing as my thought processes splintered and the fluorescent station lights began to flash violently with a ferocity that was almost blinding. And then there

22 was a change. Suddenlyat lastall the conflicting pieces of the pattern seemed to fuse into a meaningful whole. I had entered a new dimension of pure joy, fulfillment, and peace: the world seemed transfigured, and its ultimate significanceso obvious and yet quite inexpressiblewas revealed. This was God. But no sooner had I realized this than I began to fall down that familiar dark tunnel into oblivion. (p. 178) Karen Armstrong also experienced a vivid religious life; she had been a nun and has since written extensively on religious and biblical matters. She surmised that perhaps her sense of self and identity fits the classic description of the epileptic personality. Her experience and the experience of epilepsy in general deeply inform the experience of identity and how meaning is made. Epilepsy, even in its more benign forms, affects every aspect of being, from the physical to the spiritual. Denis Williams (1968) spoke with conviction of the need for the neurologist to address the whole man, including the cognitive, affective, and behavioral states which reflect especially the neuropathological state of the temporal lobe in epilepsy. In elaborating the involvement of the temporal lobe in many different levels of functioning, he considered that this culmination of neural function is the basis for the consciousness that I am. A seizure arising from the temporal lobe can cause life-like visual, auditory, tactile, and emotional hallucinations, allowing the consciousness of I am to be identified with or shaped by the hallucination and including the events of both past and present, implicitly pointing to the constructed nature of the deep structure of identity (Polkinghorne, 1991) and the potential influence of epilepsy on it. Sedman (1966) added to this by underscoring the urgent need to make meaning from the initial disruption of epilepsy, as its impact includes a new uncertainty of being. With sufficient disruption the attainment of I am consciousness may be subjectively impossible, resulting in the subject who is not. This postulation reflects the pioneering work of John Hughlings-Jackson in

23 the late 19th century, who contributed immensely to the modern study of neurology and epilepsy. He conceived the self as arising from higher order neurological function, which would then be lost under certain conditions, such as a seizure (Meares, 1999). This loss would include reflective capacity and its products, one of which is narrative. Sedman (1966) and Williams (1968) are notable in their respective disciplines for this qualitative exploration; however, neither they nor others appeared to address the possible shifts in patients perspective and understanding of reality. It is likely that at least part of this gap in the literature is due to the growing assurance of not only a neuropathological basis for these experiences but the follow-up assumption that subjective experience resulting from neuropathology is also pathological, rendering an exploration of the reality-perspective irrelevant. Norman Geschwind (1979) was a well-known and respected neurological researcher who identified a characteristic syndrome of behavioral change in epilepsy based on a long history of anecdotal evidence and the social construction of epilepsy, both of which are intimately tied to religious and spiritual experiencing. He attempted to bring these apparent features of epilepsy out of the realm of pathology into a simple description of behavior. In hastening to name a syndrome, however, the pathological view has generally persisted. The syndrome he hypothesized has the following features: Increased concern with philosophical, moral or religious issues, often in striking contrast to the patients educational background, an increased rate of religious conversions (or strongly justified, rather than casual, lack of religious feeling), hypergraphia (a tendency to highly detailed writing often of a religious or philosophical nature), hyposexuality (diminished sex drive sometimes associated with changes in sexual taste), and irritability of varying degree. (Geschwind, 1979, p. 217) Bear and Fedio (1977), both students of Geschwind, worked to develop a personality inventory that would capture and evaluate the changes associated with

24 temporal lobe seizures, as the existing personality inventories were inadequate for this purpose. The Bear Fedio Inventory (BFI) measures 18 traits, with five true/false questions for each. The 18 traits are as follows: emotionality, elation and euphoria, sadness, anger, aggression, altered sexual interest, guilt, hypermoralism, obsessionalism, circumstantiality, sense of personal destiny, hypergraphia, religiosity, philosophical interest, dependence and passivity, viscosity, humorlessness and sobriety, paranoia. The inventory is both a self-assessment, and an instrument for use by significant people in the life of the person with epilepsy, such as a caregiver or family member. The pilot study included a total of 48 participants; 27 in the TLE group, 9 of whom had histories of psychiatric hospitalization and all of whom were less educated than the contrast or control groups. One typical problem with studies of patients with epilepsy encountered in the Bear Fedio study is drawing from individuals who seek help at major epilepsy research centers. Many of these patients have intractable seizures and other complications including psychosis, developmental disorders, or significant cognitive or affective disturbances; these patients are not representative of all patients with epilepsy. Additionally, even in two persons with TLE with the same foci, there may be secondary generalization or not, magnetic resonance imaging (MRI) abnormalities or not, different onset, frequency, and duration of seizures, all of which add up to phenomenologically and pathogenically different diseases (Devinsky & Najjar, 1999). Further, now technology can distinguish between pre-, post-, and peri-ictal events, the sum of which may be experienced as one seizure. It is impossible to compare data when this level of differentiation may not have been technically possible at the time of the study or is

25 simply not accounted for (Devinsky & Najjar, 1999). Bear and Fedio (1977) failed to control for these various factors, and subsequent studies have shown an inability of the Inventory to distinguish scores from normal controls, or from psychiatric inpatient populations (Mungas, 1982). In spite of the studys deficiencies, however, the BFI and the issue of the epileptic personality are still alive today. Kalynchuk (2000) noted that the BFI does point to affective experience and behavior in TLE that differ from that of healthy subjects but these differences have not been specified or agreed upon. It remains that in TLE or other limbic system-involved epilepsies it is not uncommon to see many of the characteristics ascribed by evidence or by assumption and belief to the epileptic personality. However, epilepsy is not the sole source of religious devotion and spiritual experiences (sheim Hansen & Brodtkorb, 2003; Beer, 2000; Littlewood, 1997). Dietrich Blumer (1999, 2000) is a psychiatrist and researcher who also drew on historical literature and current clinical evidence for a personality syndrome that consists primarily of a moral and religious or spiritual presentation of varying degree with significant deepening of affect and often accompanied by hyposexuality and sometimes by hypergraphia, circumstantiality in speech and actions, and general orderliness. The intermittent dysphoric disorder, as coined by Blumer, would include symptoms such as irritability or hostility, depression, anxiety, insomnia, pains, fears, and occasionally euphoria. Even though Blumer (1999) admitted some of these personality alterations exist in healthy subjects, he has remained a strong proponent of the theory of an epileptic personality. Some of the behavioral changes named as part of the epileptic personality have been identified in the context of other concerns. For instance, bilateral symmetrical

26 hippocampal atrophy (BHA) is theorized to contribute significantly to various neuropsychiatric disorders, including affective disorders and schizophrenia. In a small study (Tebartz van Elst et al., 2003) testing whether severe hippocampal volume loss (greater than three standard deviations below the mean of a control population) is a cause or an epiphenomenon of the various disorders, a group of TLE patients was compared to a patient control group with normal hippocampal volumes. It was determined that BHA does not result in an increased prevalence of these disorders, but evidence was collected that suggested a relationship between BHA and character traits of the Geschwind syndrome. The researchers identified a relationship between BHA and personality traits found in epilepsy, such as affective symptoms (self-rated) and hyposexuality and hypergraphia (caregiver-rated). The authors presented their work as a small pilot study and theorized that these symptoms may be related as psychopathological phenomena to brain pathology, but they eschewed the possibility of a psychopathological syndrome. Devinsky and Najjar (1999) allowed that individuals with epilepsy often present behavioral patterns that are distinct from appropriately matched control subjects, but also questioned the conclusion that where there are differing patterns there is a syndrome. They acknowledged the difficulty of conducting a conclusive study to identify a syndrome, including differentiating a study sufficiently from a negative medical and socio-historical context. Devinsky and Najjar pointed out that perceptions tend to be based on what the observer is trained to see; they also underscored technical difficulties such as distinguishing ictus-related symptoms, their frequency and duration and the scope of behavior studied. These authors also itemized problems in the literature such as evaluations conducted without blinded raters; a dearth of randomized, controlled studies;

27 and the lack of rating scales based on the DSM-III-R or DSM-IV; clear empirical evidence of a syndrome or definitive behavioral patterns has not been available. The association of mystical and religious phenomena with epilepsy throughout the history of Western civilization has carried over into notable anecdotes and neurological opinions yet to be examined through appropriate clinical research. Devinsky and Najjar (1999) speculated that teleologically, epilepsy and other neurological disorders may partly persist in our species because they diversify behavior (p. 22, Suppl.). They concluded by wondering if this diversification is the primary element across the behavioral changes observed in epilepsy. Transpersonal Psychology and Spiritual Phenomena in Epilepsy Looking specifically at religious and spiritual experiences and behavior, Helminiak (1984) took a different approach in considering the person with a known neurobiological or neuropathological foundation for mystical and religious experiences, concluding that authentic growth of the subject is appropriate evidence of authentic religious or spiritual experience. Helminiak asserted this is the only level on which the question of authentic religious experience can be posed. Many people with epilepsy who experience these phenomena would describe them as spiritual, mystical, religious, sacred, or otherwise nonordinary (Dewhurst & Beard, 1970/2003; sheim Hansen & Brodtkorb, 2003; Helminiak, 1984). Given the focus on potential and helpful neuroanatomical answers and interventions for many physical, psychological, and psychiatric problems, there are few articles that dwell on the paranormal or possibly transpersonal phenomena of epilepsy.

28 Some of the common phenomena include dj vu, and jamais vu. Less frequently reported are religious visions, auditions, or feelings; out-of-body experiences; and prescience. These experiences are part of a larger context of possible events: Perceptual hallucinations and illusions (visual, auditory, olfactory), mnemonic (dj vu, jamais vu, memory recall, memory gaps/amnesia), emotional (fear, sadness, pleasure, sexual emotion, emotional distress, anger), and other [change in personality, depersonalization, feeling of presence (i.e., as if someone is nearby), forced thinking, and distortions of body image]. (Sadler & Rahey, 2004, p. 983) These phenomena can occur peri-ictally and following on Williams (1968) observation of the identification of the I am consciousness with the subjective experience, become aspects of the personality changes observed in epilepsy. In an effort to explore the psychic phenomenon of prescience, Sadler and Rahey (2004) searched a patient database of the Epilepsy Clinic in Halifax, Nova Scotia, and of 218 (out of 927) with simple partial sensory seizures or complex partial seizures (which generally arise from the temporal lobes) only three were identified through their medical records as having prescience as an ictal feature. Prescience is described as a knowing of events that would occur in a persons surroundings in the near future. Among other conclusions, the authors noted that this phenomenon is underreported in the literature as only one such case was found in a search of PubMed versus three at their clinic alone. A case study (Ozkara et al., 2004) at an epilepsy center in Istanbul, Turkey, identified religious speech as an ictal phenomenon, where the patient repeated the traditional Muslim prayer (in Arabic), God is unique and Muhammed is his prophet (p. 242). She did not exhibit any particularly religious behavior in her daily life. Ogata and Miyakawa (1998) conducted a study from 1984 through 1997 that included 234 epileptic outpatients at the Department of Neuropsychiatry of Kumamoto University Medical

29 School (Japan). Each subject was interviewed by the authors about religious experiences. Ictus-related religious experiences were seen in three patients, all of whom had TLE, some experience of post-ictal psychoses, and exhibited hyperreligiosity interictally. The authors concluded that TLE is related to both ictus and inter-ictal religious experiences, and may indicate a psychopathological syndrome. In a classic study on epilepsy and behavior, Dewhurst and Beard (1970/2003) looked at six cases of ictus-related religious conversion, drawing from the participants in an earlier study by Beard examining physical aspects of the schizophrenia-like psychosis of epilepsy. These cases included one patient who at first converted to a deep religious belief and then, after another intensified period of seizure activity, believed (again through revelation) that there was no hereafter and no divine Christ; he remained solidly atheistic thereafter. The other five patients experienced deepening of religiosity and steadfastly believed in the reality of their experiences. All 6 experienced psychosis and showed a variety of traits, such as egocentricity, perseveration, impaired memory, depression, anxiety, suspicion and/or paranoid ideation, and passivity experiences. Other researchers in medicine, philosophy, and psychology have not pathologized the phenomena of epilepsy simply due to its neuropathological origination (Beer, 2000; Doolittle, 1932; Littlewood, 1997). Littlewood questioned that an experience must be named either pathological or spiritual but somehow cannot be both; he suspected this division is likely due to clinical utility and a need for classifications. He illustrated how context of experience ultimately determines its fate, and leaned toward a narrative stance in that the individual, the community and culture, and the temporal dimension dictate the perception of the phenomena and what it might stimulate. Doolittle (1932) was among a

30 handful of neurologists in the early 20th century who did not see a pathological syndrome of personality in epilepsy; he observed that epilepsy could arise in any personality and difficulties attributed to people with epilepsy could be also found in others. In effect, he argued for taking phenomena experienced by an individual at face value. Beer (2000) attempted an exploration of ecstasy, including that which can occur in epilepsy. Again, he looked at phenomena and at the criteria for validity of the phenomena rather than the cause of its origination. Considering in particular the case of seizures marked by experiences of ecstasy, sheim Hansen and Brodtkorb (2003) noted that individuals with seizures of this nature are relatively few or they do not report their experiences as such and may in fact remain undiagnosed for decades. In this study a diagnostic delay exceeding 4 years occurred in 9 of the 11 subjects, and one of more than 25 years in 3 of the subjects. Some of these patients themselves did not suspect an illness and symptoms told to doctors were misinterpreted. sheim Hansen and Brodtkorb defined ecstatic seizures as ictal sensations of intense pleasure, joy, and contentment (p. 667) and may include cognitive and spiritual experiences. Of the 11 subjects in this study, 5 experienced the seizures as containing religious or spiritual elements. The authors allowed that human experience originates in the brain, including spiritual experience. Pathophysiological mechanisms notwithstanding, the experiences cannot themselves be dismissed as merely pathological. Some of the descriptors used by the subjects for their experience are as follows: A trance of pleasure. . . . a profound relaxation. . . . as if I were helplessly in love . . . [I] imagined the voice to come from God. . . . attacks with a change of concept of the surrounding world . . . a telepathic contact with a divine power. . . . a delightful sensation of inebriation and floating. . . . I can sense the colours red and orange without seeing them. The feeling has an erotic aspect. It starts in the

31 stomach and spreads upwards. It is pleasant, but not similar to ordinary joy. It is like an explosion. (sheim Hansen & Brodtkorb, 2003, pp. 668-670) Psychosocial and spiritual sequelae of epilepsy could affect how individuals position themselves in relationship to culture and the broader reality, potentially opening to transpersonal experiences. sheim Hansen and Brodtkorb (2003) suggested that spontaneous biogenic stimulation of the temporal lobe structures (p. 673), in instigating transformative changes in perception of self and reality, may well be an originating point for various world religions and significant cultural contributions. The available scientific literature offers little exploration of spiritual or psychical transformations in the subjective experience of epilepsy, and as to how the experience can be disruptive and generate possibly stigmatizing potential structural changes in self and perception of reality. A similar phenomenon exists in the near-death experience (NDE), which does have a well-documented phenomenological literature. Both seizures and NDEs generally involve physiological trauma, including neurological dysfunction, and produce altered-state phenomena. Broadly speaking, the available literature indicates that the altered-state phenomena in NDEs are frequently interpreted as having a spiritual dimension, though it is possible that these phenomena are under-reported by people with epilepsy. A significant contrast between seizures and NDEs is that seizures will continue. Thus, the ongoing disruption, the unknown timing, and a mostly stigmatized response by witnesses entail a different limit situation than what might be imposed after an NDE. An important similarity, however, is the tendency not to tell ones story, to keep private the reality-altering aspects of the experience, even though individuals may make considerable changes in their lives and work according to the context and content of the

32 experience. Another similarity is the probable need to process loss and grief, though of very different content. Both may need to grieve social presentation and old ways of being; NDE experiencers may need to grieve coming back (Nelson, 2000). People who experience seizures, like people who experience an NDE, need the opportunity to be witnessed in their stories, to be heard and validated. Being heard would indicate the acceptance in the subjective world of the changes wrought through experience, and the freedom to relax into a new identity and to look more creatively for ways to bring this meaning into the larger reality, thus integrating the transpersonal at a new level. Sutich (1969), in consideration of these types of positive transformative experiences, defined transpersonal psychology as follows: An emerging force in the psychology field by . . . [those] who are interested in those ultimate human capacities and potentialities. . . . [It] is concerned specifically with the empirical, scientific study of, and responsible implementation of the findings relevant to, becoming, individual and species-wide meta-needs, ultimate values . . . mystical experience . . . and related concepts, experiences and activities. (pp. 15-16) Some 23 years later, Lajoie and Shapiro (1992) revisited 37 definitions that had appeared in the literature, suggesting core characteristics of transpersonal psychology and proposing an updated definition that considered the frequency of themes in these prior definitions. They offered that transpersonal psychology is concerned with the study of humanitys highest potential, and with the recognition, understanding, and realization of unitive, spiritual, and transcendent states of consciousness (p. 91). Thornton (1979) spoke of transpersonal psychology as a method for identifying and entering the experience of the psychic structures, especially those that invite the transpersonal. This involves an opening to intuitive ways of knowing, desiring, and seeking for a larger being in life. The emphasis in these definitions is experiencing as a means of increasing human

33 potential, and ultimately of the deep experience of cosmic harmony within ones own being (Assagioli, 1973). The transpersonal incorporates the narrative perspective of self in relationship with self, other, culture, and spirit; it specifically allows for examining shifts in how the larger reality is understood and the possibility of opening to spiritual realms and abilities (Davis, 2003). The perspective of transpersonal psychology sees the potential for increasing harmony in the relationship of self to itself and to its many contexts; this view looks towards cosmic or transpersonal harmony that radiates from within, a product freed to express itself within each person through the ongoing process of disidentification from the contents of consciousness to transparent identification with consciousness itself (Assagioli, 1973). This transformative process can initially involve experiencing an ambiguity regarding identity; radical transformation can threaten the experience of existence, of being in the world (Crownfield, 1979). Assagioli elaborated on the sometimes painful aspect of this process, acknowledging first that identity is often associated with only one aspect of personality, such as body or sensate identity, affective or emotional identity, mind or mental identity, or role identity. Putting the personality together is already a profound disruption to identity and meaning-making; however, Assagioli pointed to the demise of the personalitys primacy as an inevitable product of growth and evolution. He stated, No frantic clinging to the waning old identity can prevail (p. 213); growth and evolution will lead to the emergence of the spiritual and transpersonal. This death of the former identity thrusts individuals into chaotic realms that require a deepening and strengthening in order to re-narrate their lives. Disidentification

34 from the personality structure brings in the possibility of freedom and choice; as persons move towards a transpersonally situated identity they can choosetrustwhat is needed in that moment for identity, right action, and harmonious being (Assagioli, 1973). This very move, however, is often pathologized, construed as a passivity experience (Sedman & Hopkinson, 1966b). The consensus view of psychology sees a psychotic level of functioning rather than a transpersonal way of being (American Psychiatric Association, 2000). Thus, the process of re-narrating self and identity in the view of transpersonal psychology is not only a positive and potentially transformative experience, it demonstrates a radical break within the field of psychology from the pathological assumption regarding transpersonal states. Transpersonal psychology emphasizes the need to find wholeness to experience, seeking to integrate and situate the whole personbody, mind, and spiritwithin a social, cultural, historical, and spiritual context. It is not possible to adequately address personhood outside of these contexts, which are the context of meaning creation (Good & Del Vecchio Good, 1994; Polkinghorne, 1991). The evolving nature of self and identity reflect the dynamic interplay of relationships and meaning in all of these living contexts. Concepts of meaning create the structure through which people establish themselves in these levels of relationship (Polkinghorne, 1991; Riessman, 1993). A functional identity structure arising from concepts of meaning is an essential element of a fully human life, reflecting the will to live and an idea of wholeness that can incorporate unhealth, such as illness (European Transpersonal Association, 2006). To establish any potential transpersonal nature of these phenomena of epilepsy, research efforts need to engage

35 participants through transpersonally relevant questions. Studies will only produce what they are designed to find (Devinsky & Najjar, 1999; Kvale, 1996). It could be, as Devinsky and Najjar (1999) have speculated, that epilepsy promotes behavioral diversity and, therefore, adaptive capacity in human beings. Some of that adaptive capacity may be spiritually oriented. It would be easy to say that epilepsy is a misunderstood disease, and that those who suffer from it are indeed touched by God in the sense of having non-typical connections to the transpersonal that could be of benefit to others. Even though there is some evidence to support this some of the time, it is simplistic and dismissive of the very real challenges that some people with epilepsy face and of the research done that explores the edges of epilepsy and non- ordinary states of consciousness. Also, the occurrence of transpersonally oriented phenomena does not presume the ego strength to receive and integrate such experiences, or a social context that would support them (Helminiak, 1984). Ignorance creates worlds of misunderstandings, and an arrogant and reductionistic response only creates further divides. Epilepsy has many presentations, some of which are better understood than others, and ultimately epilepsy is the story of an individually lived personhood. Conclusion In the scientific literature, there is little that reflects the foundation of the humanistic and transpersonal movements: the notions of lived personhood, wholeness, health conceptualized as inclusive of illness, and the capacity to live beyond and across individualities. The experience of chronic illness brings these theoretical constructs into question. For sufferers of chronic illness, this questioning occurs in a social and cultural context that splits the disease from the experience of being human, reducing the

36 complexity of human experience to a biomedical perspective of disease and treatment. Further, the illness experience can be stigmatized, subjecting sufferers to marginalization and moral failure. Epilepsy in particular has a long and varied history of social and cultural contexts, some positive but most of them negative. The experience of epilepsy can include phenomena reflecting profound alterations of consciousness; some of these phenomena are paranormal or potentially transpersonal. The experience of these phenomena can enlarge experience, instigating a shift in perspective and understanding of reality. Careful explorations of these subjective experiences and perspectives are missing in the literature. Exploring TLE in this research allows a deeper understanding of the phenomena of seizure-induced alterations of consciousness and subjective experience. These phenomena are generally speaking a result of seizure activity in the temporal lobe, which was the intended focus of this research effort. Employing the literature on TLE allows a functional summary of seizures involving the temporal lobe; additionally, the scientific literature that considers these phenomena is focused on TLE. Other than as a pathological residue, however, the available literature does not consider in any depth the spiritual or psychical transformations in subjective experience. Being heard is an important aspect of integrating disruptive experiences into a sense of self or identity. Not only do individuals need to tell their stories, they need an audience. In the telling, a self is created, meaning is produced, and acceptance and creative engagement become genuine possibilities. Transpersonal psychology perceives a necessity of entering into the experience of the psychical structures, seeking transformation of the personal and subjective and the perception of the larger reality. The

37 communal is impoverished without the stories of these experiences and the possible shifts in perspective thereby inspired. Narrative is an essential human endeavor, creating meaning out of the experience of authoring a self and an identity. The existing literature focuses in general on addressing the psychosocial sequelae of chronic disease and epilepsy through the use of pharmacological and psychological tools. Medical literature also works to identify behavioral and other changes in epilepsy and ways to treat destabilizing aspects of these. The literature is largely bereft of explorations of the range of human experience in epilepsy and its potential contribution to the process of meaning-making and identity, and the possible perspective shifts and new understanding that could arise. This study addressed this gap by exploring stories; the identification of specific concepts of meaning and meaning-making structures and processes adds a glimpse into the processes of personal transformation and plants a seed that may be useful in further research.

38 Chapter 3: Methods This researcher proposed to examine how people make sensemeaningof their experience of epilepsy through participants stories as well as reflections on how those stories came to be. In looking at how a person makes a meaningful concept of illness, narrative methodology speaks immediately to the research question because narrative is conceptual and process-oriented, evolving for a person according to time, circumstance, and relationship (Mishler, 1995; Polkinghorne, 1991; Riessman, 1993, 2000; Wikan, 2000). Narrative addresses both the how and the concept of meaning, which are the core of the research question under consideration here. Narrative methodology is relatively new to the social sciences in general and to psychology in particular. Riessman (1993) differentiated narrative from other qualitative methods, commenting that it is subjective and interpretive. The ongoing process of cognitive interpretation in narrative expresses the evolving nature of identity (Bruner, 2002), linking and weighing the events and trajectory of an individuals life and giving the narrator authorship of how he or she is represented to the listener (Mattingly, 2000; Polkinghorne, 1991; Riessman, 1993). Narrative is a storytelling. It is constructive in that the process of narration entails structuring and organizing the personal stories and content within the historical and cultural milieu, the contextual space of and interaction within both the interview and the narrative itself (Dreier, 2000; Riessman, 1993; 2000; Wikan, 2000). Eakin (1999) summed up narrative as a precious record of the process of identity formation, reflecting the narrators construction of self and meaning within and through cultural models of identity (p. 27).

39 Researchers have differing views on how to identify a narrative and out of what elements a narrative is constructed. Generally assumed components of narrative across its various approaches include narrative as a construction of identity and meaning in a person telling his or her story, narrative identifiable through its temporal presence, and the presence of a narrator and audience. Narrative theories diverge regarding what constitutes other essential components or qualities of narrative. Mishler (1995) established a rough typology of the various narrative approaches. The category of reference as described by Mishler is concerned with narrative as a connected succession of happenings (p. 90). The additional primary components and indicators of narrative are actual or textual temporal ordering of events, and how these events are construed as connecting. A story is interpreted and made meaningful through the lens of temporal ordering, which entails a bias towards the real chronological order of events. Mishlers second category, structure, concerns theoretical viewpoints based on literary and linguistic devices, focusing on the content of the narrative, either as it has been or is being created. Meaning is drawn forth via language and its resources. The structural perspective emphasizes the use of language and the narrative content as a primary component of narrative, plots that weave seemingly random bits of life experience into a whole. In this category, the analysis of text must be separated from the analysis of speech which uses language as inclusive of pauses, volume, and filler words, among other vocal strategies. Mishler named his third and final category of narrative methodologies functionality, which views purpose as a narratives essential component. Narrative function and its contexts create the meaning essential to a persons own story. Mishler acknowledged thisas any othertypology has fuzzy boundaries

40 and that quite a few narrative approaches draw on elements of more than one of these categories, serving to increase the array of lenses through which relation and meaning among life events can be viewed. Polkinghorne (1991) has equated greater personal wholeness with more coherent life narratives. Defining narrative order, Gonalves, Korman, and Angus (2000) identified a temporal pattern or sequencing of the range of a persons experiencing, postulating that narrative order is foundational to all of a persons understanding; narrative order allows a person to create a meaningful whole in conceptualizing his or her story. Drawing on all three of Mishlers (1995) categories, Gonalves et al. identified dimensions of narrative being: narrative structure (coherence and connectedness), process (the qualitative dimensions), and content (level of differentiation). Constructing a meaningful organization of life experience allows for a coherent sense of self and identity, a narrative being. This organization and sense of self continue to evolve over time and through experience (Bruner, 1987; Polkinghorne, 1991). According to Angus, Levitt, and Hardtke (1999), conceptualizing meaning and identity entails looking at both the micro- and macro-level narratives of any particular discourse. Gonalves et al. (2000) noted that the ontological quest for a coherent sense of self involves both of these levels. Coherence within each micro-narrative and in the macro-narrative work of weaving these together accomplishes this coherent sense of self. The relative success of this process allows individuals to view themselves as both subjects and objects of their self-authorship (p. 269). Analysis of illness narratives for the most part has a longer history in anthropology and other social research than in psychology. Mattingly (2000) argued for

41 emergent narratives that intend a close relationship between narrative and experience, rather than the more distanced stance that textualized analysis implies, with its demarcated beginnings, middles, and ends. Wikan (2000) contended that the point of a narrators story may be lost in the process of analysis, presuming the message to be about the illness. Emergent narratives would reveal meaning closer to its origin and context and feature not so much narrative coherence as narrative drama improvised and embodied, the essential link to lived experience (Mattingly, 2000, p. 205). These aspects of illness stories invite greater intimacy between the audience and the perspective of the narrator. As opposed to beginning with the end, a secure present from which to story the newly ordered past, Wikan (2000) argued that an illness narrative is marked by the absolute certainty of the beginning (p. 215), where life definitively changed in a way inextricably entwined with lived experience. Wikan observed many languages have a word for story but not for narrative; her own illness story and the field stories she and her colleagues have heard revolved much more around significant relationships and personal worlds than the illness and me narratives academia has tended to produce. The personal, social, and cultural situation of the story is necessary to its comprehension; Wikan emphasized the need to observe a narrators context and to offer resistance to a persons narrative. She expressed suspicion of researchers work that fails to question and note both the centrality of self over the situatedness of the story in the persons world and to observe the literal and the unspoken silence in stories. She concluded that understanding the other aspects and processes of a persons life is essential for accessing a narratives purpose and meaning, even though this too is limited by the audiences embodied and spoken entanglement with the story. Narrative has this contingent quality,

42 experiences groping for meaning (p. 234) that structures the narrators evolving identity. Continuing in the vein of critique and opposition to the accepted analytical approaches to personal narratives, Dreier (2000) also warned against removing narratives from their lived context, failing to consider a narrators potential for not telling stories under the constraints of current circumstances, and giving greater import to the researchers interpretation than to the story as told. Dreier pointed to the academic bias of deriving meaning from the coherence of a narrative and its structure in time. He argued for the significance of the narrative dimension of space, considering the narrative across social contexts and the structure provided by a narrators personal stance to this social space. The storys intersubjectivity may preclude coherence and a defined beginning, middle, and end. Kirmayer (2000) offered a similar critique, but spoke to metaphor and poetics for capturing these aspects of a persons story. Reissman (2000) has generally supported the currently sanctioned methods of analysis, but has also affirmed the necessity of considering the lived context of a narrative, especially the interactive shaping that conditions a narrative and its meaning. She has considered that as much as structure and situatedness are important to the narrative, content also must be considered, especially as construed by analysis. In the process of research, Riessman found her interpretation of meaning in narratives evolving over time, a reflexive process she has included in her analytic process. Researchers will often take for granted their understanding of the narrative, missing the possibility of multiple other readings and the reality of working with small fragments of a persons life story.

43 Narrative Analysis The above researchers aptly describe the virtues and the pitfalls of narrative analysis, serving as guides and warning signs for all who would employ this method. The lengthy introduction provided above to the narrative method also indicates its kaleidoscope of possibilities from which what was most fitting to this research question, inclusive of the whole of each participants discourse in the analytic process, was chosen. In looking for a theoretical stance that would bring in the entire discourse and lend itself to transparency and replication, this research employed the Narrative Processes Coding System (NPCS), a coding method that includes both the text of the entire discourse as well as a specific and replicable method for coding segments of the interview itself (Angus et al., 1999; Angus, Hardtke, & Levitt, 1996). This coding system was developed as a narrative approach to examine the linking of stories created and told in the therapeutic relationship, which is viewed as the clients process of transforming his or her sense of self. The coding system also provides a means of evaluating the construction of narratives based on the therapeutic model employed. Qualitative methods in general do not lend themselves to traditional quantitative measures of validity and reliability. The NPCS researchers have made modest progress in these measures. Angus et al. (1999) conducted a pilot study involving a very small sample: three therapeutic dyads whose outcome was considered successful by its participants. Out of a total of approximately 20 transcribed sessions, five were randomly selected and rated by two trained researchers. The interrater agreement level for topicsegment and narrative-sequence identification was 88%. This study also found that the theoretical orientation of each therapeutic dyad was identifiable by the patterns of topic

44 segments and narrative sequences. As its authors pointed out, further research is needed that incorporates larger samples, unsuccessful dyads, and possibly vocal quality and depth of experiencing. This researcher generalized NPCS to look specifically at the process of meaning-making, its pattern and structure. NPCS first identifies topic segments, identifiable by a shift or change in the subject at hand. Each segment is then subdivided into three kinds of narrative process sequences according to content shifts in the discourse: external, internal, and reflexive. External narratives describe events in the narrators life. Internal narratives are subjective, describing a persons felt response. Reflexive narratives are meaning narratives, a stepping back from the events and emotions and reflecting or analyzing the events and feelings into a sense of self. In the successful therapeutic relationship, it is expected that together these narrative process segments will reveal a transformative process with reflexive narratives that are increasingly insightful, demonstrating a more whole sense of self and identity. NPCS views the narrator and the audience as coconstructing meaning. In addition, it considers of primary significance in the research process the overall pattern of topic segments and narrative process sequences. For the purposes of this research, the coding system was used in particular to identify the meaning-making elements within each interview transcript. By identifying all three kinds of narratives, this researcher had hoped to identify patterns in the interview that would reveal how a subject directs or evolves his or her story, thereby outlining a structure of meaning-making. The narrative content was analyzed across interviews, looking for possible elements of disruption of self or identity and how a subject is using that disruption towards a transformed sense of self or meaning.

45 Within the narrative method, as well as in the use of NPCS, varied conceptualizations of narrative analysis emerge (Riessman & Speedy, 2007). Many narrative studies in fact employ thematic analysis to identified narratives. In this research the identified meaning concepts were considered only as related to the structure of both the micro- and macro-levels of discourse. This entailed what in thematic analysis would be unnecessary repetition in presentation of the studys results; however, having tied meaning concepts to their narrative contexts, the results presented have achieved a greater richness, depth, and dimension than they otherwise would. Issues of Validity and Reliability In addition to the warning of researcher bias mentioned above, other threats to validity and reliability have been identified and addressed. As the sole researcher, careful attention was paid to looking for any incongruities in the research process (Kvale, 1996). Because each interview was fully transcribed by this researcher and additional notes taken, any lapses in the analysis and interpretation were identified and corrected. Other researchers have suggested a variety of criteria by which to judge validity, reliability, and generalizability. Riessman (1993) pointed out that narrative accounts are not fact-finding missions. As a persons identity evolves and, according to context, a persons narrative will evolve as well; it is unlikely that a story will be told the same way twice. The traditional notion of reliability cannot apply to narratives. This research drew primarily from Auerbach and Silverstein (2003), who proposed justifiability as the criterion for both validity and reliability. The criteria suggested for justifiability are transparency, communicability, and coherence. Transparency means utter clarity in the steps used to arrive at interpretation.

46 Communicability judges that the meaning and constructs that result from the analysis can be understood both by other researchers and by the participants themselves. For this research, the notion of communicability was extended by Riessmans (1993) elaboration of evaluating the extent to which the theoretical constructs of the study are well supported by the narrators stories and alternative interpretations suggested. Auerbach and Silversteins final criterion is coherence, which is judged by how well the researchers interpretation comes together and makes its own coherent story. Generalizability as addressed by Auerbach and Silverstein (2003) requires both the property of extension and respect for cultural and individual diversity. Extension may happen at a very broad theoretical level, depending on how focused and specific the research is. The construct studied and the constructs implications as determined by the study can generalize, but the very specific population studied can only be extended to another sample that is precisely culturally specific. Auerbach and Silversteins term for this is transferability. Riessman (1993) defined generalizability in terms of pragmatics: Are the results useful? The results of this study show potential to meet these criteria; the potential would only be realized by further research and practical application. Sampling Criteria Prior to seeking participants and embarking on the research journey, this researcher held the intention of drawing the most appropriate subjects; as the research process unfolded, a careful assessment of an appropriate use of intuition in the analysis was made. This researcher sought clarity and mindfulness in the undertaking of each step. These transpersonal elements dovetailed nicely with the interpretive, reflective, and meaning-making aspects of narrative.

47 Narrative is a time and energy intensive method to employ; it seeks more depth than breadth and assumes that this deeper exploration will yield answers to the process questions of subjectivity, even if the results are not in the direction anticipated by the researcher. To this end, a sample of 6 subjects was used in this study; small samples are typical of narrative studies. Due to the inherent limitations of having only 6 subjects, the sampling criteria were designed to eliminate as many confounds as possible and to represent as closely as possible mainstream American society. Participants all had epilepsy with temporal lobe involvement and were compliant with a range of effective treatments, their ages of onset ranged from age 7 to age 30, their epilepsies were diagnosed a minimum of 8 years ago, and their current chronological ages were age 44 through 68. Subjects were all able to discern a before and after and found some meaning in the experience of epilepsy. Subjects had a minimum of a high school diploma and some college coursework, all were at least second-generation American, and were both fluent and articulate in English. Subjects were male or female, heterosexual, and Caucasian. Subjects did not have any co-occurring disorders, including drug or alcohol abuse or serious mental illness. Subjects were not socially isolated and demonstrated a healthy level of psychological functioning. It was hoped that all subjects would be available for a face-to-face interview in the Bay Area. The research results from this very discretely defined sample appear to have faithfully reflected narrative methodology and clarity of possible constructs and contents of meaning-making in the lived experience of epilepsy as well as offering a possible basis for further research using a much more inclusive and broad population.

48 This study limited its subjects to those who experienced any epilepsy which involves the temporal lobe, that is, non-convulsive seizures which feature altered states of consciousness. This allowed exploration specifically of phenomena particular to epilepsy. Many people do not know if their neurologist has given their epilepsy a specific name or what that name is. Naming types of epilepsy for this study, especially given that it was not being conducted under medical supervision, would have adversely impacted the validity of the study. The subjects in this study have had a wide range of subjective experiences in the courses of their epilepsies, from blackout to mystical experience, which enhanced the richness of this studys results. The criteria for age and duration were intended to address developmental concerns and a longer term of experience about which to consider. By the age of 7, a person is working developmentally on issues of who he or she is in the world and on his or her related self-worth: Ericksons industry vs. inferiority stage, Freuds latency period (Santrock, 1997). Onset of epilepsy in this stage or later assumes a developmental capacity to actively engage in incorporating the experience of epilepsy into an already developing sense of identity in the world. In addition, the already developing sense of self allows for the experience of before and after, a necessary requisite for experiencing epilepsy as a disruption in the life story, rather than be conflated with the original trajectory of identity development. At age 25 or above, a person is generally beyond engagement in the vicissitudes of becoming an adult and is therefore more capable of a broadened vision in the consideration of meaning. Given that the youngest subject in this study was 44, each participants narratives may have demonstrated more self-reflection and greater

49 flexibility resonance among them. This study assumed that the process of meaningmaking is similar regardless of age. In the analysis of content, earlier ages of onset reflected more of the qualities found in a significant percentage of children with epilepsy, such as long-term depression, anxiety, learned helplessness, and external referencing (Caplan, 2005; Gehlert, 1996). These differences are attended to in the results and conclusions. One criterion addressed the issue of compliance with treatment. All subjects in this study were compliant with some form of treatment, even if it was simply enhanced and mindful self-care. In addition to any issues raised specifically by the scenario of noncompliance, if the study had engaged subjects who were noncompliant, the results would have been potentially compromised by the introduction of a confound that might have influenced any discovered processes of making meaning. The criteria of education and familial roots in the United States addressed the narrative necessity for subjects who have sufficient vocabulary and understanding of English to describe as richly as possible their experience and avoided the confound of any stigma that might be associated with being a recent immigrant. Also supporting richness and depth of narrative possibility, as well as the ability to participate fully in the protocol, were the criteria that addressed health and stability of personhood by eliminating the contraindications of social isolation, serious mental illness, and alcohol or substance abuse. These criteria also addressed the ethical necessity of not harming study participants; individuals who exhibit these symptoms are more likely to be destabilized by an interview that is encouraging them to look within their identities and explore meaning.

50 In order to eliminate as many confounds as possible the criteria eliminated subjects other than those who are Caucasian; male or female; heterosexual; and without co-occurring neurological disorders, developmental or other significant disability. These defining elements were intended to eliminate the potential confounds specifically associated with other contributors to stigma or marginalization, identity, and meaningmaking. Any religious affiliation or spiritual practice, or absence thereof, was considered suitable for this study. Recruitment Process Participants were recruited through support groups sponsored by the Northern California Chapter of the National Epilepsy Foundation, advertisement in the San Francisco Peninsula free weekly newspapers, and on-line posting. Recruitment had also been hoped for from flyers placed in waiting rooms of consenting local neurologists, San Mateo County Hospital Medical Clinics, and comprehensive epilepsy centers. Announcement of this research effort was also disseminated through the on-line ITP community bulletin board and through similar mechanisms at the California Institute of Integral Studies, JFK University, the Wright Institute, Alliant University (California School of Professional Psychology), and Pacific Graduate School of Psychology. Other recruitment opportunities, specifically through researcher invitation, were identified. These diverse recruitment locations were intended to reach people from differing socioeconomic status (SES) and cultural background, as well as individuals who had some range of daily limitations from epilepsy. Appendix A illustrates advertising content.

51 Screening Instruments and Selection Process Subjects had the option to respond to the advertisement or invitation by telephone or e-mail. This researcher then contacted the potential subject and made a 15 to 30 minute initial assessment. The protocol for this assessment involved four stages: (a) confirming the title and purpose of the study; (b) reviewing issues of informed consent; (c) asking for demographic information that would confirm the subject meets the selection criteria and would obtain other relevant demographic data (Appendix B); and (d) conducting a brief and amended psychodynamic interview, following the work of Kernberg (1984). The Structural Interview as outlined by Kernberg (1984) is a systematic way of determining the dominant structural level of functioning: neurotic, borderline, or psychotic. The interview begins with very general questions regarding the why and the what of seeking therapy: What brought you here? What is the nature of your difficulties? What are your expectations? Where are you now regarding these issues? For the purposes of this research, the interview began by asking the potential participant what attracted him or her to this study. If the response indicated poor reality testing or a diffuse sense of identity (symptoms of low borderline or psychotic levels of functioning), then for research purposes the interview was over and the subject was deemed inappropriate for this project. In the instances where the interview continued, inquiry was made regarding social support and activity. This was a second opportunity to observe if confused, vague, or evasive responses would occur. If the interview was stopped after either of these inquiries, a few clarifying, supporting, and reassuring comments were offered, as the candidates level of functioning indicated the necessity of confirming reality and personhood. In the majority of candidates the answers to both of these first inquiries

52 indicated not only good reality-testing and sense of identity, but also the capacity for reflection. Kernbergs (1984) structural interview then proceeds along the lines of a mental status exam, looking for alterations in the sensorium and defensive or labored responses. In this study these questions addressed attention and concentration, alertness, orientation, affect, mood, thought process and content, judgment and comprehension. These evaluative criteria were addressed in a conversational manner rather than in an inquiry regarding each one. According to Kernberg (1984), these issues of function would be explored with clarifications, confrontations, and interpretations with the aim of establishing more precisely the individuals level of functioning and how that plays out in his or her life. This level of inquiry was not appropriate for this studys initial screening interview; the screening interview simply determined functionality in these basic areas. If any candidate had indicated distress or homicidal or suicidal thoughts or intentions, the person would have been referred to a hotline support phone number or an emergency room. At this point in the interview if affect, thought content, and estimation of behavior were congruent and demonstrated good reality-testing, then the candidates presentation was considered indicative of neurotic functioning and an ideal candidate for this study. Kernbergs Structural Interview (1984) is designed to assess a candidates suitability for psychodynamic psychotherapy and at what level it is most appropriate to engage the client. Because this research is not psychotherapy, the depth and the extent of the interview was appropriately abbreviated and carefully circumscribed. Kvale (1999) has advocated for the use of the psychoanalytic interview as a research tool; he proposed

53 that it is a most effective method of approaching and understanding the human situation, the general purpose of much qualitative research. Researchers have established and done initial work to validate their summary of the clinical tasks of the psychodynamic interview (Fowler & Perry, 2005). These tasks are frame setting, offering support, exploring affect, offering trial interpretations, and providing a formulation and feedback of relationship themes and conflicts. For this study, only some elements of these tasks were appropriate and were accomplished in a more perfunctory manner than would be used in a clinical environment. Other research has resulted in the Dynamic Assessment Interview (DAI), a semi-structured interview protocol assessing therapeutic readiness and Kernbergs levels of personality functioning. (Rosenbaum, Selzer, Valbak, Hougaard, & Sommerlund, 1997). It uses the here and now of psychodynamic psychotherapy, focusing on immediate interactions with the interviewer and it assesses the candidate across seven theoretical variables: psychological mindedness, capacity for self-observation, capacity for empathy, tolerance of frustration, motivation, response to confrontation, and ability to contain and work with affect. Though these instruments in their entirety were inappropriate for the purposes of this study, it is clear that the psychodynamic interview offers a rich source of information. Because this study did not use or reference any results of standardized questionnaires, and the criteria for the study were few and straightforward, employment of quantitative instruments was not required. In addition, more than one instrument would have been necessary to establish a similar result, and so the brief interview was also more efficient, taking less of the participants time and effort. Regarding the demographic data, the participants responses were taken at face value, unless the data presented a

54 discrepancy that required clarification. If a participant fit the demographics and did not have symptoms indicative of poor mental health or social isolation, he or she was invited to participate in an interview of 1 to 2 hours duration. Selection aimed to both minimize harm and represent a broad range of functional ability and age of onset among adults with epilepsy. Each participant was sent the informed consent (Appendix C) via e-mail or surface mail, depending on his or her preference; each participant was asked to read it carefully and was invited to state any questions or concerns. The participant was informed that the consent must be given prior to the interview and reassured that he or she could opt out at any time. Collection of Data For the interviews themselves, this researcher had intended to use a private office or community room centrally located near public transportation on the San Francisco Peninsula. Confidentiality, audibility, and minimization of distractions were important in considering location. Participants were interviewed once, using a short list of open-ended questions (Appendix D). Follow-up questions or probes were based on the participants responses. The interviews began with personal introductions, setting up the recording equipment, and a review of the title and purpose of the study and the anticipated length of the interview. The consent form was reviewed again, emphasizing that the participant could opt out at any time. In addition, confidential handling of data as well as making changes to insure anonymity in the final write-up were discussed. The interview then proceeded; the participant was thanked for their generosity and reminded that if he or she

55 had follow-up concerns, this researcher could be contacted via e-mail or voicemail. If at any time during the interview a participant had exhibited or expressed personal distress, the interview would have been stopped and the subject offered an appropriate service. If a subject had reported feeling harmed by the interview, this researcher would have provided a referral list of qualified psychotherapists in the subjects city or county. The interview context was intended to help support the participants comfort in sharing experiences and the researchers need to listen deeply, probing where needed and attuning to the meaning conveyed by the narrator (Kvale, 1996). The interview was considered neither the subjects or the researchers but rather a product of their interaction at a particular physical and social place and time; it was considered intersubjective (Kvale, 1996; Mattingly, 2000; Riessman, 1993, 2000; Wikan, 2000). The structure and content of the discourse was also assumed to be affected by the interview format (Kvale, 1996; Mathiesson & Barrie, 1998). Treatment of Data Because a narrator has already interpreted his or her own experience through telling the story, the researcher must keep in mind that the analytical process adds another layer of interpretation; care must be taken to maintain the focus on the narrators voice (Josselson, 1996; Smythe & Murray, 1996). To assist in maintaining this stance, interviews (recorded in digital audio) were transcribed by the researcher in order to deepen familiarity with the oral record. Each interviewee was assigned an identity code; the list of identity codes and the participant each one represents, the consent form, and the demographic information was stored and locked separately from all other participantrelated material in any media. After transcription, the digital files were saved to an

56 external hard drive, which was stored in a locked cabinet. As much as possible, each interview was transcribed and evaluated immediately following the interview, and then reviewed as further interviews and analyses were conducted (Creswell, 1998; Kvale, 1996; Riessman, 1993). In the process of analysis the researchers efforts to attend mindfully were essential. Especially as the analysis unfolds, researcher bias can greatly hinder the results. Mindfulness practices maintained in the course of the analysis likely helped to minimize bias, reach conclusions that accurately reflected the truth of the participants, and to make a clear and concise rendering of the participants processes. The reflexive narratives identified in the discourse contained concepts of meaning. Angus et al. (1999) consider reflexive narratives to contain a persons analysis or interpretation of his or her past, present, or even future experience. Concepts of meaning could have included normal/abnormal, sick/healthy, diseased/well, defective/whole, belonging/not belonging, capable/not capable, independence/dependence, success/failure, and various qualities of identity such as self-esteem, satisfaction, humor, spiritual orientation, and so on. This researcher attempted to note elements which were circumscribed or skirted but which remained unspoken. This followed on what has been called a language of silence (Rogers et al., 1999; Wikan, 2000). Ochberg (1996) has suggested that carefully analyzing a subjects narrative includes viewing the discourse as an act of persuasion and the analysis as an act of appreciating the narrators self-construction. The results presented first are possible structures of meaning-making, which were intended to be based on the pattern of narrative modes identified through the NPCS. Concepts of meaning as related to these structures are also presented. These concepts of

57 meaning were intended to be drawn from and highlighted within the reflexive narratives. These results are presented inclusive of demographic and epilepsy-related data collected from each participant. Finally, this researcher interpreted the results, considering from multiple perspectives the structures of meaning-making as determined by this study and theorizing about the dynamic that exists between the structural process and the concepts of meaning-making. In the case of this research, the interpretive questions were: What are the structures and concepts of meaning-making? Is there a pattern within or across subjects? If so, what might that pattern indicate? If not, why not, and what does the variety speak to? What are the implications for psychology and specifically transpersonal psychology? What are the dynamic(s) among meaning concepts and structure(s) of identity or self? How can these factors be interpreted through the demographic data? Interpretation allows reflection through the medium of the studys framework on every level of data, from the sum of all of the interviews to the more hidden and less visible aspects of one particular voice (Price, 1999). By working continually with the transcribed interviews, Kvale (1996) encourages taking multiple perspectives in approaching the data, developing multiple theoretical interpretations of what has been seen and heard and to ultimately acknowledge what has not been done with the data. Once the narratives were identified, analyzed, and interpreted, the results of this research were prepared for written presentation. Samples of narratives are included along with this researchers analysis. Participants received a summary of the results. A critical view of the studys rigor is included in the write-up.

58 Chapter 4: Results This researcher looked within participant narratives for meaning structures and concepts of meaning (inclusive of qualities of identity) as related to the pattern and content of narrative mode (external, internal, and reflexive). The NPCS was created to identify narrative modes within a psychotherapy session, seeking to identify patterns of both therapeutic modality and client process. In this study, the modality is the interview process rather than a therapeutic orientation, and the interviewees process of meaningmaking is spontaneous and condensed rather than facilitated over time in a therapeutic process of self-discovery and healing. This chapter documents changes and surprises in the research process, from recruitment through analysis. Results from each interview are presented, narratives excerpted that provide a sense of the unique process and shape of the interview, and an analysis. Participants are presented in order of degree of seizure control, from least to most controlled, based on frequency and severity of seizures. Degree of seizure control is known to impact quality of life (Sander, 2005); it is possible that it affects the meaningmaking process as well. Sampling Issues An unanticipated problem encountered in this study was the difficulty in recruiting participants. Epilepsy is the most common neurological disorder and the criteria to qualify for this study did not impose any burdensome limitations. Some of the proposed advertising venues proved unavailable, such as offices of neurologists and comprehensive epilepsy centers, both due to concerns regarding perceived endorsement of the study without involvement in its ethical and procedural aspects. However, even

59 with newspaper advertisement covering the entire San Francisco Peninsula, internet posting, and flyers distributed at a conference of the Epilepsy Foundation of Northern California, it was very difficult to find 6 willing and qualified participants. In an unanticipated turn of events, this researcher was able to invite 3 individuals to participate, all of whom accepted (This process remains confidential to preserve participant anonymity). In addition to the participants ultimately recruited, a few candidates did not meet the study criteria and one individual met the criteria but did not qualify based on the mental status examination. Another well-qualified candidate withdrew from the study due to her personal time constraints. The process of locating 6 qualified and available candidates took from March 20 until June 7, 2008. Because of the recruitment failure in the Bay Area, the option of conducting the interview by telephone was offered. Ultimately, 3 participants were interviewed by phone, all of whom seemed quite comfortable with the process. Demographic Information The criteria for this study were intended to limit participants to those who most closely represented mainstream society: Caucasian, heterosexual, second or further generation American, proficient in English and a graduate from a minimum of high school, and possessing adequate mental health. Epilepsy-related criteria included epilepsy not concurrent with any other significant disability, onset of epilepsy at or after age 7, diagnosis at least 5 years ago, and current chronological age at or greater than 25. The sample obtained met these criteria and included specific demographic trends. The age range of this sample is from 44 to 68, age of onset and/or diagnosis from 7 to 39; most participants are able to drive and do not experience significant limitations in daily life

60 functioning. The majority are highly educated and raised in a Christian faith. What follows is a more specific demographic statement for each participant. Barbara is 47, single, with onset and diagnosis of epilepsy at age 12. Her seizures are not well controlled and are psycho-socially limiting; she is unable to drive and experiences memory problems significant enough to limit her employment opportunities. Barbara obtained a Bachelors degree in Social Work, but is unable to work in her chosen field due to her cognitive difficulties. She was raised and still practices as a Roman Catholic. Anna is 47, divorced, with onset of epilepsy at age 14 and diagnosis at age 39. Seizures are a limiting factor in her social functioning, though she was successfully attending college at the time of her interview. She was raised and still practices as a Methodist. Bill is 58, married, with onset and diagnosis of epilepsy at age 30. He experiences occasional seizures, but these have not been a psychosocially limiting factor in his everyday life. Bill obtained a Bachelors degree in Psychology, completed a two-year radiography program, and became a Registered Radiologic Technologist; he is also an adjunct professor at a junior college. He was raised Roman Catholic and no longer participates in that or any other faith practice. David is 44, married, with onset and diagnosis of epilepsy at age 7 or 8. He experiences minor cognitive disturbances on a very occasional basis, and these are not a socially limiting factor in his life. He obtained a J.D. and practices employment law. He was raised Jewish in an atmosphere of relaxed religious participation. He maintains that practice and approach and has also experimented with Buddhist meditation.

61 Margaret is 68, divorced, with onset and diagnosis of epilepsy at age 24. She does not experience any seizure activity or limits on her functioning though she considers adhering to a careful regimen of self-care as a form of successful ongoing treatment. She obtained a Master of Arts degree in Psychology and works as a musician, music teacher, writer, and speaker. She was raised as a Methodist and considers herself open to all paths, no longer practicing a specific religious faith. Monica is 61, divorced, with onset and diagnosis of epilepsy at age 18. She does not experience any seizure activity or limitations on her functioning though is very careful about self-care, especially adequate sleep. She obtained a Ph.D. in Psychology and works as a Neuropsychologist. She was raised Southern Baptist and though she no longer practices a specific faith, she considers herself Christian and her work as a meditation practice, promoting health and healing. Data Analysis Initially, an intended gestalt of each subject was derived via carefully listening to the complete interview while transcribing. The transcription was accomplished closely following each interview, in some cases being completed the day of the interview. The second step of analysis involved identifying in each interview topic segments and then the sub-divisions of external, internal, and reflexive narrative modes. Topic segments are identified by shifts or changes in the subject, or an elaboration of one aspect of the subject. External narratives describe events in the narrators life. Internal narratives describe the narrators felt response. Reflexive narratives contain a persons interpretation of past, present, or future experience. The third step of analysis looked within each narrative mode for concepts of meaning.

62 The original protocol called for evaluation of the pattern of narrative modes within each interview to reveal possible structures of meaning. In completing the third step of analysis and identifying concepts of meaning, it became clear that rather than the pattern of narrative modes, the concepts of meaning outlined the structure or process of meaning-making, and the macro-narrative described the transformation or evolution of that structure through the lens of the experience of epilepsy. This finding changed the final step of analysis, as meaning concepts were liberally distributed among all narrative modes rather than just in the reflexive narratives, as originally postulated. In both identifying meaning concepts and structures of meaning, the need to attend to what was not said became increasingly important. Attending to the silence was part of the original protocol, but it was not known at that time how important this step would be in the process of analysis. Several areas of inquiry revealed a spectrum of response beyond what was anticipated. One such area is the demographic question concerning whether or not a participants seizures are fully controlled. It became clear that a person may apply several criteria in making this evaluation, all of which can play into the meaning-making process: the persons subjective perception of the issue of control; a more objective evaluation of the severity and frequency of the seizures; and the individuals perception of limitations on daily life, including occupation, social context, and lifestyle, resulting from the anticipated or actual seizure activity. The order of participants as presented in this chapter reflects levels of control of frequency and severity of seizures. Because seizure control is an issue unique to epilepsy and is fundamental at least to the content of meaning-making,

63 attention is paid in the selected narratives and in the analysis to the more nuanced and complex explorations of this issue each participant pursued in telling his or her story. In the course of interviewing this studys participants, a second unanticipated issue arose. Based on participant stories, this researcher found herself questioning what it means to have a chronic disease. A few of the participants are seizure free and/or no longer take medication; all of these individuals pursue various lifestyle management strategies to maintain seizure-free status and good general health. Do these participants have a chronic disease? The general definition of epilepsy provided in Chapter 1 indicates both neurological findings and clinical report of key impacts as relevant for a diagnosis of epilepsy. The associated goal of treatment is no seizures and no side effects. Current neurological testing and clinical evaluation were not criteria for this study; however, every participant reported having been diagnosed with epilepsy in the past. More relevant for the purpose here was consideration of how chronic disease may be understood, namely that it is somehow enduring but also distinct from incurable. If no seizures and no side effects is a curethe removal of symptomologythen two individuals in this study are cured, notably without medication or other medical intervention at this time. Both are clear that without considerable ongoing effort and devotion to lifestyle management and intensive psychological and spiritual work, they would likely continue to experience seizures and need medical intervention. Even though these individuals might be considered cured, they are included here as having epilepsy, a chronic disease. A third participant who is no longer taking medication reports ongoing seizure activity. He does not qualify per the above as cured, and although he is under the care of a neurologist, he is functioning without current medical intervention. Again,

64 looking to the definition of epilepsy provided in the introduction, this participant continues to cope with cognitive, psychological, and social effects of his epilepsy, all of which are chronic or enduring effects of epilepsy and relevant for this study. Several narratives are presented for each participant, and meaning concepts and qualities of being are identified. Quotes that appear under each participants heading are directly from his or her interview content and are left as much as possible in the mode of the spoken word. Analytic commentary is included after the narrative sections so as to not interrupt the first person presentation of self and the shape of the interview. Barbara Barbaras epilepsy has been and remains poorly controlled since onset and diagnosis at age 12. In addition to her medical regimen, Barbara tries to live a healthy lifestyle, paying particular attention to adequate sleep. Barbara works as a cashier and in related capacities in a hospitals dietary department, a placement provided to her after she was unable to perform in another assignment due to memory problems; memory and related difficulties were cause for Barbaras long history of being fired from social workrelated positions as well as for ending her career in social work. Barbaras narrative was told in quick and passionate speech, and a tone conveying humor, irony, disbelief, frustration, and so on. Barbaras story began: Well, I was 12 years old. And it was December 24, and I just fell over and had a grand mal seizure for the first time. Thats how it all started. And they didnt know what was wrong or whatever and put me in the hospital and ran some tests and of course they never found anything, whats the reason why. And put me on medication right away. And I even saw a neurosurgeon to rule out brain tumor. So, and everything was good. Her narrative continues, bringing in the disparities among her environments: My dad was a school teacher, and he had witnessed seizures before, so he knew what it was. But they were all so shocked and surprised that this could happen,

65 they were like, Oh my gosh! What happened and why? They just couldnt understand why it happened and soand he had a pretty good idea of what it was. The funny thing is they came in the hospital room and said to me, You probably have epilepsy. And I said Oh, its like that commercial! I remember watching this commercial a number of times. At that time, it was 1973 where they had just a whole room of kids and they said pick out the one who has epilepsy. And of course you couldnt. I got that. And I said, Oh, its like that commercial! They were looking at me like What? Going back to school was really hard. [The epilepsy and the medications] made a huge difference. . . . It was really tough. . . . Kids used to ask me all the time when I was young: Are you on drugs? . . . It was really tough even early on [because of how kids treated me]. I remember that in particular. And always whether to share or not to share. . . . Kids are cruel anyway at that age, at most ages. They would say things like that that just blew me away because my family was so accepting and knowledgeable. . . . And yet at home, they were kind of like, even my Dad, he was like Be careful who you share this with! And I thought, How weird! Why would you have to be careful? There was always that kind of taboo, sort of ominous you know. You cantits not like you have a broken leg. You know, Be careful who you share that with. And its like, Why? People will think differently of you. Specifically, Barbara speaks to the gap between her experience at home and at school. I had a seizure when I was in high school and for some reason my post-ictal phase was always just like a couple days where it takes me really to recover. And I had been in a typing class and I went back and I couldnt remember what we had learned. You know, the class had probably just started a few weeks before and it was like starting all over, you know, and it just really threw me. Because a lot of people didnt know, the teacher was kind of like you know, Whats your problem? I noticed things like that, right away, where the people were blaming me, you know, instead of having empathy or you know, whatever. I was blamed for not, especially being a teacher, yet! . . . And so that was hard. . . . [My family] didnt really know or understand in the beginning but they listened to me. . . . They would get it. . . . You know, it was a lot of talking and trying to understand. Barbara discusses trying to make sense out of these differing reactions. She states, I think the thing that frustrated me and you begin to question yourself, you begin to blame yourself, you begin to say, Oh this must just really be me and not the seizure disorder.

66 Barbara moved away from home for college, and observed that she felt very different from the other students: she felt she had to try harder, work longer, pay twice as much as other people. She states, I was really struggling, really having a tough time, and I think I started, I did, I started to blame myself. Even when her epilepsy was known, she felt dismissed and misunderstood: I mean new people were kind of like you know, Hey, youve got a seizure disorder, big deal. I mean nobody really took me under their wing and said, Oh, let me get it . . . or I want to understand. In retrospect, Barbara identifies an intensification of depression as college progressed; she tells this story outlining this difficult period: When I was in college the one thing I was trying was to pass a statistics class. I was going to school for social work, a bachelor of arts in social work. I could not pass that class. And so I really started to go down, because I couldnt pass it. I even went and got tutoring; I mean my math skills have always been so low, for some reason. And, I just couldnt pass it. So I kind of had to go through a whole rigamarole of trying to figure out how to not take the class. And I remember at that time I was really depressed because people werent listening to me, my advisor was telling me to go talk to the Dean, and I would and they were sending me back to a tutor and I kept saying, I just cant do it. I know I cant do it. They ended up finally saying, Well it took the college so long to make a decision of what to do that well just waive it. . . . But I was I think I was a junior when they finally said, Sorry we put you through all this. . . . Oh, it was horrible! Barbara spontaneously repeats the story of her college statistics experience, bringing more depth to what it represented for her: No matter how hard I triedso in a way I was kind of good at tryingbut it didnt improve the situation. Because what happened was the college kept telling me, Youre not going to graduate, you have all your classes, you have everything but youre not going to have a degree. So, I noticed at that time I was really, really depressed. I didnt know what it was; I just knew that at that time I started thinking about overdosing. That was kind of the first time that that happened and I remember I took some extra medication, whatever . . . I think I was on Tegretol at the time. And I took maybe an extra two and I went to one of my classes and I was sitting there and I was like Whoa! You know, I felt so buzzed and whatever, and my instructor, who happened to be my advisor, came up to me after class and said Are you okay? And I said, Im just having a really hard time. And I started thinking about it later, and I was like, God, what did I do? I cant

67 believe I did that. So . . . yeah, that was a, it was a very difficult time I think because I dont know . . . because of the stress from that thinking Im not going to graduate. It seems like I had kind of really lost a lot of friends when I was in college, I would move around to different dorms and I dont know, it was just very difficult. Barbara then explores how her relationship with her parents became increasingly distant, observing: Who wants to hear all this negative stuff while youre watching your sisters succeed? implying and imagining that her parents would not want to hear her struggles when her sisters were doing so well. Barbara then departs from her heretofore chronological telling and ties her relationship with her parents to the past and the present: When I was probably 14, 15, my parents started talking to all of us about going to college. We were all going to go to college. And I knew early on, a very young age, what my limitations were. And I kept saying, I dont want to go. And theyre like What do you mean you dont want to go? I said, I cant, I cant do it. And so (sigh) even though they supported me through a lot of things with the seizures and the epilepsy and stuff, they didnt listen to me and they said, Youre going tothis is the funniest part . . . or most ironic partyoure going to be living . . . where are you going to live? Youre going to have to be dependent on somebody someday . . . and youre not going to be able to live on your own. . . . So here I am, living with my parents! I mean its like hello! I mean I knew, and Id sit there and cry and cry, I said, I cant I cant do it, I cant go . . . I maybe I can do something else, and they kept saying, But what? And you know at that age you dont know what you can do. So I went to college very, very (sigh) under duress. . . . The other day my mom said to me, Arent you glad you have a degree? Thats one of her things she says a lot. And I looked at her and I said No, Im not any different today than when I was 14, when we just started talking about this. And she said Really? But arent you glad you have it? And I said Im working in dietary. I have a hard time keeping my job. I dont see where it helped! . . . They closed the door. And there was nothing else. As Barbaras life progressed, she struggled socially as her friends got married and had children, and she had less and less in common with their lives. Barbara had wanted marriage and children. In addition to letting go of these dreams and desires, she states, It was just like another hurtOh gosh, here we go again! You know, not fitting in. Barbaras current perspective is more flexible, there is less emphasis on her loss and pain, and more on the shared ups and downs of human life:

68 Probably it took a while to say, I just dont even want to date anybody. You know and then you see people who are together and its real easy to say theyre happy and they have kids and then you get talking to them, and I cant tell you how many women have tried to give me their husbands! and their children! But you know, its like, another thing to make me different. Its really hard to . . . now Im in a really different place with it though, I dont feel so isolated or different from others. There are so many people who are divorced and single and just, you know, you name it. Barbaras attention sometimes supports her identification with the epilepsy in a negative way. She states, I think its always been a part of me, its not something you can think of not having. It was a part of me even before I had the seizures. I knew something was wrong. Barbara relates the following narrative: My second job out of college as a social worker, I made the mistake of telling my boss that I had a seizure disorder, and she was so stupid, she said Oh, we have a token disability person. And I went What? She said, We have our token black person, that would be that girl, now we have a token disability person. And I was like Youre joking, right? And she laughed and she thinks its so funny, and then I met them later . . . pretty early on when I was first hired. There were like Oh, were all meeting at this bar to doI cant even remember what it wasand thats how she introduced me to people. I was never so devastated in my life. I wanted to die. I wanted to crawl under the floor. I just remember thinking, Oh, My, God. So here she told a bunch of people that I work with [about my seizure disorder] and said it in that kind of light, so you begin to not trust very many people. So overall thats the kind of impact [epilepsy has] had on my life. From the point of view of the present, Barbara describes her continued process of transformation: So its been really tough, but like I said I found this therapist, and Ive been saved by the grace of God with her. Its opened a whole different aspect and world to me because I can so much relate to parts, you know, the whole inner family system, not just child parts but all these different parts of yourself. . . . Instead of feeling lost, awful, devastated, that theres no hope, theres a place to go in my mind to say, Okay whats really going on here and what part is taking over. You know theres a part taking over that says Youre stupid, youll never make it in life, youre 47, oh my God, look whats happened. And you kind of get those messages over and over and at least I can kind of identify whos saying it, what part of mes saying it and have some work with that part! Its so great because this therapist says, shes taught me to say things like Try to have empathy for this part, talk to the part, say What do you need right now? Because you cant be in charge! You cannot be in charge! Right now, even though you want to be! So

69 what do you want? And there are times Ive had to send it away to you know, school! And it works! Its amazing! Its the first thing that I found that worked. Back in 1993, I was like, Oh my God, this works! So, thats been really helpful. Barbara searched for and found ways to help herself; she reports echoes of this capacity in earlier yearsfinding other students at college with epilepsy and other disabilities. She states, There was like that connection . . . I learned that kind of early on, if you connect with somebody who has a disability, who has something similar or, you know, youre not quite normal or whatever. Barbara tells stories of her closest friendships and how these have changed over the years. Here she speaks of her dearest friend: She has grown to understand, she has given me the time and the opportunity for her to understand. . . . I can actually tell her honestly whats going on and you know she has her own struggles . . . even though its not what I have. So thats been a positive thing. Barbara contrasts these relatively recent developments to earlier behavior: I think I used to hide a lot. . . . If there was somebody who knew there was something kind of wrong [with me], they couldnt get it out of me because the hell if I was going to share!and end up with no friend. She illustrates how she continues to work with epilepsys impact: The seizure disorder, I know I was born with it and I know it was there and so, if my brain had been totally normal I wouldve been me, but better. I wouldve been me, but better. Without the seizure thing. Because its impacted my life so dramatically, I feel. In many, many, many negative ways. So, an upside? I dont know . . . I think of some of the people Ive met, some of my really good friends. When I think about it, you know in their own struggles and own things theyve been going through, maybe I wouldnt have gotten to know them like I have. Again, looking back and seeing great contrast, Barbara begins this particularly poignant story: I was just fired from a social work job and really, fired for the first time and it was probably a month later and its one of those things that people just dont seem to understand. I happened to have my medication in my car with me; I have no idea why I did, it was weird. I had a couple bottles I think. Why I was carrying them in

70 my car who knows, but I just opened them upit was just the TegretolI opened it up and I just went boom, boom, boom, took three handfuls and did this big huge sigh of relief and went (big sigh). Now, now I actually have control over something. She reflects on her suicide attempt and what she wanted: I didnt really want to kill myself, I really didnt. I just wanted to feel better. I didnt want to die . . . you just want the pain to go away, you want to kill the pain, [and] keep your body here. And so that ended up being a very horrible awful thing and I never told anybody when I was in the hospital. I kept wanting to call friends and family and I kept saying no, no, no. Barbara had given up other dreams, but hoped that work could bring satisfaction. [I had thoughts of suicide often,] because in your mind you think, Okay, Im such and such an age, I can even handle not being married and not having kids. But I should be able to do a job! I should be able to do a job that I went to school for! And I couldnt. I tried for years to do the social work thing. And I couldnt. And so I just thought you know werebecause theres just really no answers. Gradually, Barbaras perceptions shifted: I began to separate who is supportive and helpful and whos not. And people with even the most minor of disabilities or problems and how they cope with life became important to me. And I started to see, I could kind of see that whole picture, just life in general, how people got through every day. People who have struggles and problems, Ive always been kind of more in a counselor/helpful role to people I think, in a way. Barbara then speaks to the complexities of others understanding what epilepsy is: I think at a really young age I was kind of like, this is me and this is the medication and this is the illness and I wish, I just wish until this day . . . I wish people would understand that its not just that you have seizures or you dont. Barbara has worked hard in pursuit of knowledge and growth; she states, I always wanted to understand my self better and be better. Her work has changed her self-perception: This is the strange part, recently, and it took me this long! I said to myself, Okay, youve lost another job, but you explained why and what was wrong to these people and if they are accepting it, then why arent you accepting it? Thats what I did. And I said, No more of this suicide talk! But it took this long! Oh my God! You know it took this long! Finally! But every once in a while it does creep

71 in, and when it does just because I think it was a habit more than anything, itll creep in just periodically and Ill say to myself, Oh there you are, that isnt really helpful to me anymore and Ive accepted whats going on in my life and its fine. That in itself is amazing, isnt it?! Part of the struggle for Barbara is understanding why epilepsies that involve the temporal lobes are distinguished by sometimes profound and almost always unpredictable emotional and sensory changeswhy it is that way, and why is it that way in her. She states, You think about somebody with a different type of illness. And I think how come they dont have these other things. And maybe sometimes they do but like the depression and the whole mood disorder thing, why dont they have that too? Why are we cursed?! But we have those things [as part of the epilepsy], and nobody told us! No one told us! The mood changes associated with epilepsy have not been well-addressed by the medical profession in the past, and these changes still often go unattended. Barbara ties the current understanding of mood changes to an event approximately 20 years ago: I met the neurologist and I talked to her a couple of different times. And the second or third time she said to me, I really want you to see the neuropsychologist. And I said, Why? And she said, You know, you have depression and epilepsy together. And I feel that we could maybe sort some things out with neuropsych testing. And Im like, Okay, and it really scared me, I didnt want to do it and I never did at that time. But she really explained to me how the two things are separate but together. And it was the first time I ever heard that and it didnt have a huge impact on me like it does now, because you didnt have any information about that, you didnt read things or hear other people talk about it. You know, it was just that one doctor saying that. So it wasnt until about three years ago when I had lost another job, and it wasnt a social work job, it was a receptionist sort of thing, but I actually did have testing. The neuropsych testing. And thats when they told me, they were like, Wow! Youve got memory problems! Its like, I do? I couldnt believe it! And theyre like, Yeah, you really do. So, even though somebody did tell me, it was probably 1986 or 7, maybe later, that that doctor told me about the two things being possibly connected; I remember her saying that they were possibly connected but we treat them different, we treat them separately. And so even today I think about that and how other people who have other illnesses, why dont they have to deal with that too?! Its just weird. . . . But I spent years trying to

72 figure out what was wrong with me, looking in the DSM back then, the DSM-III. You know, Id read [the lists of symptoms], Do I have this? Do I have that? In the course of the interview, Barbara asked about the experience of this researcher, specifically regarding finding meaning in epilepsy and the problem of separating the person from the illness: Do I assign any meaning? . . . I dont know because Ive had [epilepsy] forever. So its really hard to sort out the illness from the person, you know. . . . I mean, can you do that? Can you? . . . But I just wondered, should I be able to do that? A connection was made in this mutual exploration, one that was experienced by both as affirming and productive. Barbara reflects, You really have helped me sharing about yourself, it really helped me to kind of say, Oh yeah! Wow! Somebody else does experience that. And its one of the reasons I [access resources], because I was wanting to connect with some other people. Because I think I still struggle with that. You know, why, why is it so like this? At the end of the interview, Barbara shared a touching story that brought her process of meaning-making current. One of her medical treatments is the Vagal Nerve Stimulator (VNS), in which a small implanted device delivers a charge at selected intervals in an attempt to prevent or curb seizures. One of the side effects is a raspy voice: I finally ended up getting the VNS; that was kind of a good thing and a bad thing because of the weird things it can do, and you worry about your vagal nerve being fried and things like that, but I really dont have seizures that much at all, I mean, but I fell down a flight of stairs, and another right before that I broke my arm and . . . it was doing stuff like that, that I thought, Oh my God, maybe I really should get this thing. You know, so, the thing Im noticing now socially, at work or whatever, people say, Whats wrong with your voice? So I have had to share more. In the beginning I was just kind of going, Oh, I just have this voice thing. But that only lasts so long. So now Im having to share more than I ever have. Which has ended up being a really good thing! Its been a very positive sort of thing! Throughout her interview, Barbara highlighted differences: differences in levels of achievement, levels of understanding, and in being and feeling different from others.

73 She frequently used words such as tough, struggle, and hard. Fear and shame were ushered in at the beginning (Be careful who you share that with) and then reinforced in school and life experience. Being and feeling different became imbued with the belief that something was wrong with her; she was deficient and could do nothing about it. At the same time, Barbara appreciated her familys efforts to understand and support her, and looked, largely unsuccessfully, for that understanding in other areas of life: school, work, friends. Over time, Barbaras sense of difference slowly extended even to her family as she experienced increased depression, loss, failure, self-doubt, and loneliness. She felt no one reached out to her, and she was unable to reach out for help or understanding. A profound sense of difference, loss, hopelessness, and lack of control culminated in her suicide attempt. Beginning at this point, Barbaras narrative systematically expanded to include transformative concepts of meaning, slowly questioning and evolving old perceptions of self, others, and the world. Though seeds were planted long ago, it was at this point that Barbara sought more actively to connect with the struggles and sufferings of others and began to question her habitual responses of feeling inadequate, a failure, and different. Her perspective shifted generally from internally to externally oriented, ameliorating her sense of difference and allowing an increasing degree of self-acceptance and self-confidence. She was able to step back and look at what was actually happening and experienced self-efficacy and accomplishment within what were actual limitations, such as her memory. She still wanted to understand and longed for others to understand her and her experience, but she was realistic about that, choosing to focus on her own growth and taking the positive in relationships as it came. She

74 expressed hope for the future and a willingness to accept what was present. Her core meaning concepts have not shifted; meaningful connections, seeking self-knowledge and understanding, and being accepted and accepting were still primary gauges of the health of her world. What had shifted was her perspective, looking for and finding these in the ordinary and limited everyday world. The structure of Barbaras meaning-making process arose from a perspective of loss: I wouldve been me [without the epilepsy], but better. The epilepsy, which she described as latent from birth, took something essential and positive away from who I am and the process of meaning-making was a continuing story of restoration, of finding that lost but essential connection to her best self. The constellation of meaning concepts that Barbara mapped out for her audience includes the suffering, the longing for and lack of understanding and connection, the sense of deficiency and shame, among others, that were specific illustrations of that original loss. The evolution of her meaning-making process and her sense of I am was beautifully and movingly illustrated in her narratives of self-acceptance, of reaching out to others in their suffering, and in her willingness to continually work with her parts, shifting her perspective from one of loss to one of intimate connection. Looking specifically at the issue of control, Barbaras macro-narrative spoke to it in varying ways. With Barbaras suicide attempt, she immediately felt relief and a sense of control in her life. What she wanted was to stop the pain; the occurrence of pain had been out of her control. The sense of being deficient, shameful, and somehow defective was not in her control, like the epilepsy that had kept her from being her better self. In Barbaras story were few mentions of fear of seizures or even of particularly severe

75 seizure events but rather these qualitative expressions of lack of control. As noted earlier, the constellation of meaning concepts pointed to a structure of loss and lack of connection. Control takes on a qualitative dimension and was first and devastatingly related to the story of life as loss. The evolution of meaning-making, working the slow and staggered shift from a perspective of loss to one of heartfelt connection must also then change the issue of control in its qualitative dimension. The fundamental shift towards self-acceptance and self-knowledge that Barbara illustrated is a perceptual shift; how control was perceived changed as well. Barbara told through her story that she questioned her conditioned responses and was able to reality-check them and change the story. She was the author of the story; this is a qualitative dimension of control and it has changed her relationship with her epilepsy and herself. Anna Anna is a divorced mother of two children; one child is grown and the other died in infancy. She is currently studying for her Bachelors degree and hoping to find a career in human resources. She is the child of a Methodist preacher and remains in a Methodist faith practice. In addition to taking her medication as prescribed, Anna also is attentive to regular sleep and stress management. Because of the long time period between onset at approximately age 14 and diagnosis at age 39, Annas story of onset is less certain in its presentation. She states, Well, (sigh) this is just a best guess, but we really dont know. But I had my tonsils and adenoids taken out when I was 14, and had a horrible time coming out from underneath the anesthesia. And, I dont remember anything about being in the hospital, I dont remember anything about the two weeks afterwards. And it was after that point that I started having kind of like sensory problems. Just a little bit off and on, but it wasnt ever really bad until I went off to college. And like

76 knowing everything I know about epilepsy now, I feel like this is all just best guess, but I feel like if I was always at home with mom and dad where I was kind of on a regular schedule, it was just mild. Because when I went off to college I wasnt eating right, I wasnt sleeping right, I wasntyou know how it is, when youre a kid in college and away from home for the first time, and thats when it went from just simples to complex [partial seizures]. But I didnt have the first tonic-clonic until I was 39. And I was actually working at a hospital, and thats where I was! From her story of the onset, Anna shifted gears to the practical world context of her diagnosis. She states, I was working at a hospital until the first of March, and the breakthroughs [seizures] started getting really bad, but I was working three 12 [hour days], living with my daughter and her husband and his two children and . . . Im not really a big city girl and it was just way too much stress, not nearly enough sleep, and . . . I just I cant do this . . . plus I was down to one more time of being late and my boss was going to have to fire me. And she and I talked about that and we were talking about some way to get around that and I was in a stat c-section one morning, and just lost about 15, 20 seconds. Which as it was, it was no big deal because we had already delivered the baby, we were just you know basically sewing the mom up. But it made me stop and think, Okay, what if this had happened while we were delivering the baby? Or if there had been complications? Or if [the seizure] had progressed on to a tonic clonic? And I, after we both scrubbed and cleaned up and everything, you know I went in and told her, I said, I need to turn in my resignation. I said, Between everything thats going on, its just best if I take a break. Anna then tells of the experience of being diagnosed. The biggest thing was it was a relief, really, to be diagnosed. I mean because for years, I know I thought I was crazy. And Im quite sure my family did. And of course before that they didnt know that I was hearing things, and seeing things, knew what blue tasted like, but they knew something was wrong. My Dad, like I say hes a Methodist preacher, but hed also worked with detox and rehabilitation with alcoholics, he had worked in the mental health system, I mean this man had counseled and helped hundreds of people and he couldnt help me. And when he found out [my diagnosis] he literally sat down there in the hospital and cried. You know, and I feel like it was nothing but relief. It was like okay, well now weve got something we can deal with, this is something we can get a handle on. My ex-husband, which we divorced in 94, and after I was diagnosed . . . I called him and told him, I said, Look, for years you asked me, How can you be so smart and do such stupid things? And well, Ive got an answer for you! And then you know we talk, now were friends, but thats it, and I think that was pretty much how my whole family felt. [There were times when] they would say,

77 Whereve you been? and I would say, I dont know. And I know that they always wondered, because basically Im a very truthful person, now Ill tell you the truth when actually lying would be better for me. But I know that they always wondered, Why is she lying to us? You got to know where youve been, youve been gone for two weeks! Where have you been? I dont know, I cant tell you, and Im going to bed now. And then she presents the Anna who existed before the onset of epilepsy. She describes: I was, I almost hate to say this, but believe it or not, Im quoting my mother, but I was a perfect child. And shes got five! Yeah, shell tell you, up until I was 14, 15, I was basically a perfect child. Straight A honor roll student, I mean I was someek is not the right word, but I was, I had two younger brothers, and the one thats three years younger than I am would hit me, and I wouldnt even hit him back, Id tell him that, well, hes little and I dont want to hurt him. Thats the kind of child I was. I started cooking and helping [my mom] around the house when I was in first grade. And I mean of course I dont want to sound like I was wonder woman or anything, but I was a good kid. Straight A student, good kid, never missed Sunday school, involved in ChurchI mean obviously we were all involved in Church, but I actually enjoyed it. And I had friends, little boyfriends, you know how you do, 12, 13 years old, after this which now I was in ninth grade. Lets see, well I had the surgery in the summer and when I went into ninth grade, within six weeks of starting the ninth grade I had been in a fight at school. My grades were down. I think a B was probably the best I had all year long. I got expelled for smoking in the bathroom. It was just different things. And then being a preachers child we moved. We moved because I was a problem, but we moved between my ninth and tenth grade years and I did well in school one year after we moved, we were in a smaller school, so it wasnt quite as much turmoil as it was in the bigger school I had been in, but I really never made friends, never went out, didnt socialize like I had when I was younger. And it was always kind of just like theres something a little off, and I dont know what it is, but theres just something. Now I was involved in some things, when youre a preachers kid youre involved in stuff at church, though it wasnt like I enjoyed it like before. Part of it was you just never knew when you were going to have that fear [part of the seizure, not a reaction], for no reason, come over you; I stayed home a lot. A lot easier to deal with it when youre in your house. Her story of the experience of epilepsy continues: After I went off to college, was when it really got bad. . . . Once I went off to college and it started getting a lot worse and it was not just every once in a while, it was a lot. And it went from just like I said the simples to the complex [partial seizures]. And I really honestly about that time thought I was crazy. Up to the point where when I was 21 I attempted suicide. And I was in a mental hospital

78 from Decemberwell, for, right at three weeks. And when they admit you, your family, friends, or nobody can come see you for two weeks. And when my family could come see me, my dad took one look at me, and hes like, Okay, weve got to get her out of here, theyre killing her. Because one thing, I didnt need to be on the psychiatric medications. Because that was just making a bad thing worse. And I wouldnt eat anything because I was paranoid that they were poisoning me, I mean it was really bad. And my dad said I looked like I was just walking death. Of course I dont remember any of this. I just know what theyve told me. But anyway he had me released to his custody, care, and live with them, and I got a job and got back on a regular schedule. And then after that I just never said anything else to anybody else; I figured out on my own that as long as I stay on a fairly regular schedule that it was better, whatever it was, the craziness, whatever. Now one thing, prior to the suicide thing, I was drinking real heavy, which if you dont know who you are, dont know where you are, and youre drunk, people dont think too much of it. If youre sober, they kind of wonder whats wrong with you. Ive been in and out of therapy for trying to make sense out of things prior to the diagnosis and Ive had more than one therapist ask me Why did you want to die? And I was like, No I didnt want to die specifically, I just wanted it to stop. To stop not knowing where I was, who I was, what was going on, having people tell me I had done things. And thinking I couldnt have done that! It didnt even make sense. I wouldnt do things like that, thats just out of character for me. I dont walk up to people and just start screaming and hollering at them. But when two or three of your best friends tell you that you did that, or when you no longer have any friends because you know youve been told over and over that you do things like that. Its just, when youre sitting there and you have no lights in your apartment because your lightsand you know good and well you paid the light billand then you go to get something out of the freezer and you realize that oh, well theres my money and my light bill in the freezer, whats it doing in there? You just want all that to stop. Its not so much as I want to die as this has just got to stop. Anna persevered; there came a point, however, when she did not know how she could move forward. Annas story of attempted suicide is narrated here in its entirety. It was, oh actually it was the day after Christmas, and I remember sitting at my grandmothers, all the family was there together, and I had walked outside to smoke a cigarette and my dad followed me out there and he was just talking to me about something. And it was just like all of a sudden I felt like I was just such a waste. And Im sure, knowing him, I dont remember the conversation, but Im sure knowing him it was like okay youve got this new year coming up, youve got to get yourself together, weve got to get onI know my dad just well enough to know this, I dont remember the conversation but hes a real okay this is what we need to do kind of person. And I remember standing there and him just standing there and me thinking, It aint going to happen. I have tried. You think

79 Im not trying, dont you. You dont, you knowI cant do it. I tried. And I dont know why it doesnt work. I dont know why. And I went to my [brothers] apartment and it was just like the next thing I knew I woke in the, I was in the hospital. An angel was sent to me. I am meant to be here. [My brother] and his wife were gone out of town and they lived in a duplex that belonged to her aunt. Her aunt lived on one side, they were in the other side, and her aunt had been renting out that duplex for like 15 years and had never used her key to go in. And she had left to go backshe had gone back to school. And had left to go to the city, she was going to the university and realized that she had forgotten something, drove past one exit on the interstate thinking, Well Ill just get it next week, and got to the next exit. And she says something just kept telling her to turn around and go back. So she turned around and came back, pulled up in the yard, saw my car out there, and thought, Well, thats kind of odd, whats Anna doing over here? And went in to get whatever, and kept hearing the phone ringing [in my brothers unit]. It would ring and ring and then hang up and ring and ring and she thought, Why isnt Anna answering the telephone? And she says somethingshe started to get back in her carand she says something just would not let her and she used her key and went in. And found me. And called 911. Thats the only time she ever used her key in all the years she had rented that apartment to people. The paramedics said that if she had notthat if it had been the next day before somebody found me, that they would have found a corpse. Thats why I said I dont know why Im here but Im here for a reason! And I had takenthey, well they pumped my stomach because they werent really sure what all I had taken, but in amongst the combination of things I had taken, they knew I took quaaludes, and amphetamines, and valium, and drank. About a half gallon of Jim Beam. And slit both wrists. I mean, I wasnt playing, I was leaving here. It was a miracle. And I tell my daughter all the time, because she hadnt been born yet, and she was meant to be here. [The woman who found me] came to visit me at the hospital before they committed me. And I dont remember her being there, but several years later I found the card that she brought me. And she said that she didnt know why the angels had sent her back, but they had sent her, they sent her back and theyre giving me another shot. Dont waste it. So, like I said, Ive been through some hard times since then, but the idea of ever trying that again has never crossed my mind. At this juncture, Anna still did not know she had epilepsy. She was just 21, 18 years shy of her diagnosis at age 39. She saw a counselor, got a restaurant job and settled

80 down. She had her daughter, and then her son about 18 months later. She reports the next events as an unemotional blur. She states, My son was born . . . and then he died when he was, he was born in July and he died in January. Sudden Infant Death Syndrome. And then I went to work for the post office as a rural mail carrier. And that did not work out well. After relating the disastrous story of her postal job, this interviewer inquired what Anna might have seen for her future at that point in time. She had a long string of stories full of her efforts and full of external failure, and even though she never again considered suicide as an option, her situation did not appear to hold much hope. She responded, Well actually, I built a house; I got a home loan, and built a house there. When Maggie was little, before I started working at the post office, I had wanted to start a catering business once she got up old enough; I had to work, full-time. But when she got old enough, thats what I wanted to do. [I wanted to] buy the restaurant where I worked. Which I knew at some point in time the couple I worked for were going to put it up for sale. Yes, and now I, after my son died, one of my best friends, she said, I just dont know how you go on. How you dont fall apart. And I said, Well I dont have an option. Ive got my daughter. And I look back on it, and why I have stamina, and boy if they just knew . . . at the time, I thought I was crazy, too! Anna had always wanted to own a restaurant. After she was diagnosed, she put all of her energy into realizing this dream. She describes this period of her life: I always had thought I wanted to own a restaurant. I did that. After I was diagnosed and after I was on medication for about a year. And I ended up in the hospital and my neurologist, my cardiologist, and my general practitioner all said, Okay, you just cant do this, honey! Youre going to kill yourself! I actually thought I was having a heart attack. And I say my cardiologist, its our family cardiologist; my dad has had two open heart surgeries, my mom has heart disease, and my oldest brother has had a stroke. And Dr. James is, like I said, hes our family cardiologist. And so when they took me in, I told them to call him, so they did and he immediately started running all kinds of tests because he thought thats what it was, too, with the family history, plus Ive always smoked, plus Im overweight, plus Im under all this stress, and he came in and hes like, I cant believe it, but your hearts fine, honey, he said, You just totally overstressed yourself, you just have worn yourself out, and why in the world you were not seizing I dont know. Because I said, I mean, hes a family friend as well as our doctor, and so he knew I had epilepsy. Hes like, I dont know why, theres no

81 reason why you werent having some kind of really horrible seizure when you came in here. But when all three [doctors] came in and said almost the same exact thing, I just said, okay. And went about what it took to close the [restaurant] down. There are a lot of people though, that have a dream that never realize it. And I had mine and I realized it. In addition to having realized her dream and having been able to move on, she looks at the issue of stigma and its potentially limiting impact: I know there are a lot of people that feel like they have a stigma or that they really have a problem talking to people about [epilepsy]. It doesnt bother me. And I feel like, and having given, Ive given this a lot of thought, and I feel like for one thing, I was working at a hospital, with a great group of people. Who were my friends when I had my first grand mal and was diagnosed. And they were very loving, very supportive; it was not a bad experience. I mean, it was a bad experience, obviously, but socially it was not a bad experience. I had wonderful people that were there. And my best friend drove me to and from work. Almost every day for a year. He went in and talked to our boss and said, You know, you need to put AnnaI was a nursing assistantand he was an RN, with ten years experience. And he said, You need to put me and Anna on the same time schedule, he said, Because when she comes back to workbecause I had taken a leave of absencehe said, But when she comes back to work, Im going to drive her, because she cant drive. And our boss did that, our director, she put us on the same schedule. If he worked, I worked. She continues, describing changes in her life after her diagnosis: And too its a relief to me when they start talking or even when my friends do, when they start talking about something, and I dont know what theyre talking about, I can say, I dont remember, I dont know what youre talking about. Instead of trying to piece it together. I feel like I can just totally be honest. Prior to being diagnosed and knowing that I had an actual physical condition, I would not have let that stop me. I would never have said, Hey look, I dont feel good. I would have made myself go on and do, because I didnt want to be sick. I was not going to be sick. No matter what. My daughter used to laugh and say they thought that I was going to the doctormy daughter would say, Well you better call the ambulance then, because thats the only way youre getting her to the doctor. Knock her on the head, she has to be unconscious! She states, I would never be one to say people bring things on themselves, because I dont believe that. But I dont put up with a whole lot of stuff either. . . . I just dont,

82 and if people start off trying to say hey, well let me take some. You know, its just, you obviously need some education. And Im about to give it to you. She relates this story: I was walking down the hallway one day at the place where I worked, and ran into the guy who was the employee counselor, and I spoke to him. And then Larry stopped me, and he said, [The employee counselor] is always glad to see you, youve got the most gorgeous smile! And he said, It just lights up your whole face and its always such a pleasure to run into you. He said, You know I wish more people justAnd I said, Honey, if more people had woke up in the emergency room as many times as I have, not knowing who or where they were, or what was going on, theyd just be so proud to be here and know what was happening! And they would be this happy too! At the same time that Anna is independent and strong, she finds it difficult to receive help or experience herself as dependent in any way. Right now Im living with my sister and her husband, which they have told me Im welcome to stay here forever, my sister loves it. Im a fantastic cook, my sister does not cook. And she says she absolutely loves coming home and having supper every night, and, which I would clean up and piddle around and, my brother-in-law is gone a good bit because of his work, but I really dont like feeling dependent. And intellectually I know that going back to school and finishing up my degree makes more sense. Because then I can get a job that actually I can stay with and have a future, that has something I can stay with that is not going to be something Im going to kill myself doing. The emotional side of me is, Okay I just need to get out and get a job. So Ill have my own money, my own place, my own, you know, take care of myself. And my ex-husband and I as a matter of fact, we were talking about that yesterday, he called to check on me and we were talking and he said, Yeah, Ill send you money, he said, I make good money and there is nobody here. But I said, Well, whats the difference between you taking care of me and them taking care of me? And he laughed and he said, You just never have learned to let anybody love you, have you? He said to me, You know, you would give the shirt off your back to have, you know for somebody else, but you just have the hardest time letting somebody help. And I said, Well I cant stand the idea of being dependent. And he said, Youre going to have to kind of get over that. Its just, its time for you to learn to accept some help. And he said, I dont want to have to come visit you in the hospital. And thats about where you were when you were in the city. And if you dont, youve got to do this, if you dont want to do it for yourself, he said, Do it for me. Because if they call me, Im going to take off from work, come visit you at the hospital, and then Im going to get in trouble for taking off from work! I said, Well, okay.

83 Im a caretaker by nature. My doctor, he keeps telling me, he said, Anna, if you could ever learn to take as good of care of yourself as you take of my patients, you would never need to come see me except to get a prescription. I try to take that in. But its one of those things like I say intellectually yes, okay, it makes perfect sense. But emotionally I kind of have to fight with it. It just sort of goes against my basic nature. When my sister and I were talking about finishing my degree she said, Theres so many areas that with counseling or career placement or any kind of human resources where that caretaker that you have in you could be so much better served than what it has been. Not only for you, but for other people too. Overall Anna experiences a notable degree of self-acceptance. She reflects, Since Ive been diagnosed, Ive learned to be a lot more open. I think now, of all the time that I wasted because I wouldnt, and I hate to say I wasted it but, I wonder what would have been different, had I been more willing to be open and say, Hey look guys, this is what is going on. And I dont know if Im crazy or if theres somethingJust because one doctor said, Okay well, its psychological and were going to put you in this mental hospital, that doesnt mean that every doctor would have. But as I said, now I tend to be a lot more open about things. And Ive come, I guess Im more comfortable with me. This is me. This is who you get, this is what I am, this is who I am, if you dont like it, well thats just your loss. Because Im a pretty neat person. And I know its kind of strange that it would take something like winding up on the floor of the cafeteria at a hospital to do that for you, but its just . . . there was always a persona, a very public persona and then there was a very private person. And all the hurt and fear and anger and everything else kind of stayed in the private person. After the years of struggle, the suicide attempt, and then the building of a new life, Anna describes a clear sense of meaning: Whatever it is that Im meant to do, for whatever reason that my brothers neighbor was sent back that night, and whatever reason that everything has unfolded as it has, theres a reason for it. Somewhere, I mean I have either touched somebodys life or theres somebodys life I have yet to touch, or theyre manysomewhere along the way, theres a reason. And I may not understand it, I may pass from this world never having understood it, but there is a reason. Now when I get to the other side, Ive got a list of questions I want to ask! And finally, Anna speaks with warmth of her desire to witness wholeness in herself and others: I see so much comparison betweenwell, and I know its kind of strange but theres my oldest brother who had a stroke and then my youngest brother who recently has started treatment for prostrate cancer, and that is with all of us, its

84 when you have something like this enter your life, you have a choice to make. And that choice is youre either going to be an informed participant in your healthcare or youre going to be a victim. Which is it going to be? Now, we all chose to be informed participants and fight it, or not fight it but deal with it and work, and try to make our lives as manageable and do as much as we can. There are other people in the same set of circumstances basically who have chosen to be victims. And I look and see the difference between us. And its like, okay, theres people need to know, you cant just give up. It doesnt matter if its epilepsy or diabetes, or high blood pressure, whatever it is, you have the choice. And even if its terminal, you still have the choice. Ive worked with too many patients who were dying that still had a quality of life. And all of it was because of their attitude, they savored every moment they had. Anna told her story in a straightforward and matter-of-fact way. Through her stories she illustrated that she carried her burdens alone; from her current vantage point she observed that these resided in her very private person, who held all the hurt and fear and anger and everything else. In contrast, her public persona was strong, independent, caregiving, capable of getting things done and achieving success. A strong aversion to receiving help, to admitting weakness or illness, and to any kind of dependence necessitated denial of her own limits and very real pain, including that of failure; this denial coupled with an intense focus on the immediate tasks of life helped Anna make it through the 2-plus decades between onset and diagnosis. Anna tended towards a black and white, either/or perspective and has treated herself accordingly. She gave her work everything she couldwhether it was her suicide attempt, her work to build a life for her daughter, or pursuing her dream of having a restaurant. Annas narratives described her poor skills at self-care and her personal imperative to do what was right regardless of the personal cost. In her independence and the overwhelming importance of the meaning concept of being strong, she was also very hard on herself, blaming herself for the impacts of epilepsy on her life and demanding more effort in the face of sometimes overwhelming challenges. She outlined a sense of

85 integrity and fairness, she acted as a personal protector and champion of the less strong (including family members, employees, and patients) that justified the public persona she showed the worldstrong, undaunted, unafraid. She lived in the present, grateful for what she had and could do. These qualities and meaning concepts were present in the stories she related from childhood as well as those after the onset of her epilepsy. After her diagnosis, Annas life moved out of a struggle for survival to a position where she was freer to reflect on her life and process. Ironically, it was only following her diagnosis that Anna was able to accept help, to accept being cared for and supported in her own efforts to build a stable and satisfying life. She was working on being both strong and open, to being comfortable with me. The structure of Annas meaning-making process derives from what was unspoken in her interview discourse, namely, the perspective of power and control. Meaning concepts of strength; caregiving; fearlessness; self-blame; either/or; and denial of weakness, vulnerability, or limits were all issues of power and control or the loss thereof. Annas most impassioned narratives were towards the end of her interview, when she spoke of a more integrated self and the choice of being in charge of self or being a victim. The moving and heartfelt perspective shift was that this integration and choice were in a context that included limits and vulnerabilities. Control came down to this choice, a choice to savor every moment, not to give up, and to be in charge of ones care. With this level of control, whatever the experience of illness or limitation were, you could deal with it and work with [it] . . . [and] do as much as we can.

86 Bill Bill is retired from a career as a Registered Radiologic Technologist and currently teaches part-time at a junior college. He no longer considers himself either religious or affiliated with any faith practice, though he does believe there is some kind of higher consciousness. His seizures are controlled sufficiently to allow him to drive; he does have occasional break-through seizures which do not cause a complete loss of consciousness. In addition to his medication regimen, Bill is careful to maintain good general health by getting adequate sleep, eating well, and engaging in moderate exercise. Bill was a particularly good story-teller. His interview overflowed with narratives in a style full of humor, sometimes with artfully timed self-deprecating remarks, and always with an eye on the good things in life; his interview is punctuated by happy endings. Consistent with Bills presentation, his description of diagnosis is simple, straightforward, and connected to his efforts to know and understand what was happening in the context of his life: Well, on my 30th birthday, at work at the hospital, I had a grand mal seizure. And my father had had one seizure before, but I had these little spells which I later came to recognize as either single or complex whatever they were, but since I had been meditating, I thought I was having spiritual experiences, but it turned out not to be. So all of a sudden I wake up on the floor at work and these doctors are standing over me and theyre saying, Youve just had a seizure, and Im thinking seizure, and I was thinking stroke. Because Im in that sort of post-ictal state, so I didnt know what the hell was going on! So that was the beginning. In retrospect, Bill was able to identify at least a few years of complex partial seizures before he was diagnosed. He describes what he originally perceived as possible spiritual experiences. I guess like the dj vu experiences, that I always found so amazing. Youre sitting there and all of a sudden its like I remember dreaming this exact circumstance and just that sort of detached unworldly feeling and . . . they didnt actually happen while meditating, but . . . you felt like, man, I remember talking

87 to this person, this exact same circumstance with that person walking by and this time of day, and again I dont know if I really dreamed it or the quality of it, if it was a fluke of the nature of thebut anyway, without even looking into it, just saying, superficially it felt like I lived this before. I mean it wasnt even any great thing, it was just a remembrance of like you were sitting there and the cat was sitting there and I had my feet up with my new sandals type thing. . . . Nothing at all monumental or interesting. During the screening interview Bill stated that his seizures were fully controlled by medication. At the time of our interview, Bill had returned the previous day from a vacation taken with his wife and some friends. He had a seizure, consistent with prior experiences, while he was exercising: I was playing soccer with three other people and it was really hot, and I never play soccer, so Im running around like a fool, totally out of breath, and then all of a sudden, Uhoh, Im feeling it. . . . Just sort of that very detached feeling of having dreamed it before, and then I was surprised that they could tell, because to me it seemed like I was acting normal. But I guess because I wasnt talking or moving. And then of course it took a while till later till I totally remembered. Bill elaborates on the brief interior experience of some seizures: Sometimes it just seems like Ive entered this sort of eery creepy dream world, where Im slightly outside this dimension and its kind of not a pleasant feeling and then a few seconds later sort of come right back in and go phew! Im glad life isnt like that all the time. . . . [Its] not fearful, just creepy, sort of like theres no life or energy from this dimension. . . . Even though I would still be perfectly aware of you, [I would] feel like I was looking from the outside in. And the world I was in didnt have all the, I dont know, all the subtleties of energy and life and its just kind of ait was just sort of an empty desolate world, I guess youd say. Not a scary world, justalmost like maybe you were dead and watching in and this is what it would be like. Where you were no longer able to interact. . . . Although that sounds much greater than it really was. I mean you just kind of go in and go out and its not that big of a deal really. . . . Youd be walking down the street and maybe 20 yards later youll be back again and but its like, ew, Im glad life isnt like that. Im glad Im on my medication, because what if it was like that all the time. The one difficulty Bill associates with the experience of epilepsy is memory problems: I have a really hard time remembering things. Like my wife will say, Remember in the movie? No. Dont you remember we saw this movie? No. Of course half

88 the time she saw it on the airplane, so I truly didnt see the movie! Or, trying to do anything mathematical, multiply something in my head, the numbers get up and float away before I can do it. Yeah, mostly just inability it seems like to think on any kind of complex level. It seems like things are kind of blocked up. The difficulty with memory is largely attributed to medication side effects: Its really pretty trivial, Id have to say. Its more of a minor irritation, and I know plenty of people who are that way who arent on any kind of drugs. Also it seems like the inability to think on a more complex level but maybe you lose that by the end of your 20s anyway! In sum, Bill states, I always felt like I probably had about the minorest [sic] form [of epilepsy] you could possibly have. Bill finds a positive context and outcome even when something difficult or challenging does occur: It was almost 3 years ago, it was a rainy day and its an area where youre going up the freeway and theres an interchange on the way to the college, anyway a whole bunch of freeway things come together, and youve got to get from here all the way over to here. It was raining, so traffic stopped, like it normally wouldnt. And I had been taking a bunch of cold medications and stuff. Which I found out later interacts and dilutes the effects of Dilantin, but at the time I had no idea. . . . Plus I think I had hardly slept that night either. . . . And so apparently I had rearended [this car] four times, but I was able to drive off the freeway and just make my usual turn and go up to the college. But I had this foreboding feeling and then I got to work, got out of my car and looked at my hood and I said, Uhoh, what I think might have happened, I think really happened. And this is when I called my wife and we went down to the highway patrol and the woman happened to be standing right there making a complaint about this idiot who ran into me! And thats when I said, Did this happen at the interchange? And she said Yes, did you see it? I said, Well, I did it! Suddenly she went from being really angry to going, Oh my God, you had a seizure? Oh, Im so sorry! So she was relieved to know that somebody hadnt deliberately rammed her. And the highway patrol guy tore up the report and said, Okay, it wasnt a hit and run, you guys work it out. And she showed me her car, and I gave her a ride home. And insurance covered it. . . . [My neurologist] said, I dont want you driving for three months. But he said, I wont take your license away. So, that was really nice. In discussing others understanding of seizure experiences and what constitutes a seizure, Bill observed, Until they experience it themselves, you know, they cant know. Bill relates how he considers the experience of epilepsy:

89 Occasionally Ill tell the students [I have epilepsy], and, no I dont in any way feel like a freak. . . . No, its never bothered me at all. I guess because Ive never been around anybody who went Oooh, stay away from my child! Bill questions the label epilepsy: To tell you the truth I always felt sort of like I didnt really have epilepsy because it happened when I was 30, not like kids I knew in grammar school that were having seizures out on the playground and stuff. You know, I dont have whatever they have! Ive always felt like I didnt have epilepsy. Oh sure Ive had a couple of seizures, but I dont have epilepsy! However, Bill continues to provide stories that reflect an experience of having epilepsy: I was jogging in the park, I dont know if youre familiar with the hill in it? So I ran to the top of that and then I ran down and apparently I just fell down and went into a seizure, and there was all these people standing around me and next thing I know an ambulance is coming, and I realized uhoh I dont want to get into this ambulance because theres no point, but they took me anyway, so I got a bill for $300 bucks, which, now it would probably be $3,000 bucks! And they started to drive me to some other hospital and I said, No no, Im a Kaiser member. And I just sat [in the emergency waiting room] for about eight hours and then jogged home at midnight! . . . But I was lucky, people were nice enough to stand around me and call for help. He then relates how epilepsy has changed him: Youre more empathetic towards other people because you can understand something that you never could understand before. And after our interview, Bill reflected in an e-mail message, How could I think a seizure or two is significant when as [a radiologic] tech I worked all day with people with terrible injuries and afflictions. What is a momentary lapse of consciousness compared to that? He continues in the interview, discussing how he has made sense out of his experience of epilepsy: This is maybe an odd way to think of it, but I feel less guilty because other people have all these afflictions and I never had anything, so now its like, Well, hey! Ive got epilepsy! So then I dont quite feel that Ive gotten all the good things in life. But on the other hand, Ive never felt epilepsy was anything bad either. So its sort of a cheap way to get off! . . . Maybe Im sort of in denial, too. Its like well, I dont really have it, so!

90 And in a similar vein, he addresses his difficulty with memory: In some ways its nice, because things that might be bothering you, you forgot them already! You cant worry too much about the future because your minds no longer capable to make those kinds of extensions so, your kind of in this little blissful now, like you think, Gee, maybe if I went off the medication, maybe it wouldnt be good, because maybe I would be able to do all those things and start thinking, oh Im going to die soon, or! And addresses his one identifiable fear: The only scary thing is when I go out on my motor scooter, and Im thinking, Ew, if I have one of these now, Im dead. . . . Actually, I just got a newer, bigger [scooter]. Its just so much fun. And you know, on this cruise [my wife and I] went on, there was 2000 people and like 1990 of them were over 80 I think, so Im thinking, God, if Im 58 now, in 12 years Ill be 70, theres not that much to look forward to! You know, its not like I was 20 and I got killed, but 58, if I got killed, probably I just wouldve spared myself a lot of misery! Bill finishes his story by spontaneously reiterating his perception of his experience of epilepsy. I dont even feel fair saying I have [epilepsy], because mine is so trivial compared to what other people have had, that its almost an insult to them to say that I have epilepsy after all theyve gone throughand Ive gone through virtually nothing. . . . Ive been extremely fortunate . . . because I have experienced nothing compared to what all these other sufferers of epilepsy have had. Bills exploration of his experience of epilepsy was light-hearted and came across as slightly detached. He consistently provided positive reframes of his experience, rationalizations for how trivial his epilepsy was, and an ongoing elaboration of all of the positive aspects of his life. He explored his epilepsy as an interesting subject, turning it over and observing it through a mostly humorous lens. The potentially limiting and uncontrollable aspects of epilepsys impact were minimized amid the allure of other life activities, such as enjoying the motor scooter. However, Bill also presented a strong sense of empathy for the sufferings of othersin fact, he chose a career where he dealt with the sufferings of others on a daily basis. He revealed that his experience of epilepsy allowed

91 a stronger empathic experience. In listening to his stories it was difficult to discern where the disregard of limitations imposed by his epilepsy left off and a genuine acceptance of his suffering, however slight it might be, facilitated by a deep regard for the experience of the suffering of others began. It was in the shift from detached rationalization to the heartfelt empathic response to othersdeepened by his own experiencethat the crux of Bills story of transformation lay. The meaning concepts of positive outcomes, future options, and minimization of pain and limitations, among others, remained. The structure of meaningmaking remained the samelifes touchstone was the positive and the abundantbut Bills perspective over time had shifted. Pain and limitation were marginal due to the capacity to see the goodness of life; optimism and hope provide shelter when the situation was difficult, even in something as simple as Bills car accident and probably in much larger life contexts in his work as a Radiologic Technologist. Bill presents something uplifting in not having taken life too seriously, having been willing to pick up and try againcheerfully. In a final e-mail, Bill states, I am not being blas about my epilepsythe degree I have it hardly affects my life at all. Although, when I [drove] the 600 mile round trip into the hills last weekend, the thought often went through my mind that if I had any kind of partial seizure, would I have enough time and presence of mind to pull off the road? Then, the very next morning after I got back, I had a "space out" right in bed! Pretty convenient, huh? When I had one of my last "grand mal" seizures, I had just come from a motorcycle trip through the winding hills of Mt. Tam. I didn't have the seizure until an hour later while jogging in the park. I often think someone is watching over me, because I always seem to walk away unscathed from things. Must be my good karma! Control did not appear to figure significantly in Bills story, though his somewhat distanced stance may have been in part a way of exercising sufficient control. Looking specifically at seizure activity, he reported his seizures as fully controlled, and yet

92 continued to experience at least some seizures that did not involve a full loss of consciousness. Logically, there appeared to be a contradiction, but Bills structure and concepts of meaning illustrated that there was no contradictionthere were simply multiple perspectives from which to see that the seizures he did experience were not debilitating to him, were not limiting his activity choices, and were nothing relative to the suffering of others. David David is married and has two young children. He practices employment law. David continues to participate in Jewish ritual approximately once or more each month and has also been interested in Buddhism, spending some time meditating. He does not currently take medication and does not experience any seizures that would interfere with his responsibilities. He works to get enough rest and takes reasonable care of his health. Of all of the participants, David was the most methodical with his speech. David began his story as a series of recollections: As far as I know, and you know this is really going back to when I was seven, I fell off the monkey bars at school, and I was, I actually do remember this, that I fell off, and I remember lying there and it was this . . . its where you are unconscious for a brief period but youre not, its not like youre moving around, and then you start to come out of it, and I remember that. And so I think after that I had some tests done and I started seeing a neurologist. At that point . . . I went to the hospital. . . . I do have a recollection of that, being in the hospital. My grandparents were watching me, my parents were out of town, when I was in the hospital for a day or something andit might have been overnight actually. For a boy in second grade, life changed in distressing ways: I had some problems [after I got epilepsy]. To the extent I started to feel different, and I wasnt able to do things that other kids could do, wasnt allowed to, and I had to go for these tests, and I just felt different. Like something was wrong with me. I couldnt go swimming alone, I couldnt play contact sports, not that I was really made for that anyways! But I wasnt allowed to do contact sports or swimming alone, I wasnt allowed to go off the diving board. I have never learned

93 how to dive, because I wasnt allowed to do that. These are not huge restrictions, but they were things that set you apart from other kids. For David, seizure experiences were also distressing: [There was] another incident when I was in grade school. When I was standing by a locker. It was just all cognitive, you know, like what is the world? Like I literally dont even really understand what the world is. If it wasnt so scary it would be very trippy. . . . It was terrifying to me. Im not sure why, if you knew that it was going to start and end, and you werent going to die, why is it so scary? I mean I could tell you my name, but the significance of being me, it gets lost. David then explores the early impact of epilepsy on his life. He states, I think it had more of an effect on me and my sense of security. I dont know that it was that very brief period of having altered consciousness that affected my sense of identity as much as just the fact that I had these episodes and was worried about them happening again, and sometimes felt like, I dont know, I could control it or something, that kind of impacted me. . . . I mean that I felt weak. I couldnt do things that other people could do, there was something wrong with me, and I wasnt safe, in other words, life wasnt safe, I think, is what it was. There was this scary thing that happened all the time in your life, that probably has an impact. At the same time, David draws these recollected episodes into his present perspective and experience: Im pretty asymptomatic now. . . . I would say [epilepsy] shaped in part who I am. I dont think it has a continuing affect on me because I dont have seizures or very, very infrequently. And so, I think its more what did having epilepsy, how did that shape who I am. I think it had an impact in terms of like I said, my sense of security. . . . But also I think its made me more, whats the right way to say it, I think Im a more compassionate person because of it, I think Im more sensitive to other peoples situations and limitations and conditions. I think thats probably also a factor. Because when you grow up and youre different, and you cant do certain things that other kids can do, I think it sensitizes you to that, and so I find that Im pretty sensitive to other peoples limitations and stuff. As David moved into adulthood, he began pushing his neurologist to stop the medication, which was the most present sign of [the] restrictions. He states, I always denied that I had epilepsy, internally. . . . [The medication], this daily thing youre supposed to be taking, its something that makes you different, that reminds you daily that theres something wrong. . . . So finally I had this doctor

94 who [agreed to discontinue the medication], and that was [in] my early to mid 20s. Ironically, David had a series of events in his late 20s and early 30s that he experienced as seizures, which his doctors labeled as cardiac events. He says, Then it went full circle. It went from me denying I had seizures to trying to convince these people that I was having seizures, and they were saying, No, its a cardiac event. . . . Ive always kind of felt like Im having these cognitive seizures and I can almost feel like I can put myself into one. . . . I feel like Im sometimes finding myself having to distract myself, because Im scared its going to happen. And that sounds crazy. It just makes me neurotic, probably. He balances this fear out as he states, [Epilepsy] continues to have effects on how I interact with the world, and shape how I interact with the world. A fear that I would [have a seizure], yeah, so I carry that around. . . . But I like also the positive side which is that I think its shaped who I am and how I view people; my work is basically representing people who I view as the underdog in cases, and people who have been discriminated against and so I think probably [the epilepsy] was an influence in that. Echoing the understanding of having something wrong with him, David remembers his childhood interpretation of what he knew of his repeated electroencephalograms (EEGs), which record the brain waves measurable from the surface of the head. He understood that his sleep EEGs showed slow waves (slow waves and spikes are typical of recordings that might indicate epilepsy) and thought, Geez, I guess Im not thinking fast enough, if my waves are very slow, you know! He remembers thinking of all of the careers and life activities he concluded he would not be able to do. David speaks from his present perspective and proposes solutions. I would like to think that what you should be doing is reinforcing to your child that they can do whatever they want. That they can achieve. . . . But just on the point of being able to feel like you can do what you want, I remember being told that Abraham Lincoln had epilepsy and Julius Caesar had epilepsy, and that was really important [to me] as a kid to hear that there were people out there who could be very successful and who had this. So you kind of view it as like oh, man, this is going to stop me from being able to do what I want to do in life. And then, Im now just remembering this, I remember thinking I cant be a doctor. I cant be

95 a doctor, because if I was in the middle of surgery and I had a seizure, they wouldnt let me do that. I started thinking about all of the things that I wouldnt be able to do. And feeling that, wow, I cant do those things. . . . You think wow, I cant, theres so many things I cant do! Because if you are doing some of these things and you had a seizure, youd you knowand then hearing that there were these people out there who were very successful, who had epilepsy. I dont know if they do this, but they ought to have, the Epilepsy Foundation ought to be going into groups of kids who have epilepsyI dont know how they do it, either they take [the kids] somewhere or they bring people in, but [the kids] ought to be interacting with people with epilepsy who have all different careers and so that its like, wow you can do anything. . . . But for reinforcing self-esteem and a sense of possibility, they ought to be doing that. Because I think if you let kids think, they can think of all sorts of things, and all sorts of horrible scenarios, and so I think if you provide information and let them [know] that they can realize they arent restricted in that way, that would be good. David then moves on to explore his experience: [Epilepsy] is one more thing I worry about and its made me more fearful; the idea that you can at any point lose control is scary. When I go swimming, my whole life, like I go into the ocean or something, I always [think] if I had a seizure now Id be dead. . . . And thats made me less secure about myself, my physical safety, and maybe even beyond that. . . . And it ties in with theres something wrong with you and people are going to know that. . . . When the seemingly random thing happens to you periodically that deprives you of control, its got to have a real negative effect. . . . Epilepsy shaped my sense of security and fragility and that has had enormous ramifications for me as a person. And yet, even in the circumstance of a seizure, David finds what he calls a humbling effect. He elaborates on this point, saying, When you forget that life is fragile and you start getting all involved in all your work and how important it is, and blah, blah, blah, and boom! Something happens. It kind of brings you back to the essence of stuff, so, thats never a bad thing to be reminded of. . . . [The essence is] definitely not work. Its probably just the relationships with people, and which I think Ive never been very good at, by the way, I just dont think I am. But it would, it helps you focus; its the kind of thing where youd rather go spend time playing with your kid than sitting at work at 10:00 at night kind of thing. Anything that brings you back to helping people and loving those around you, thats probably a good thing. . . . Things that take you right out of your game are, you know, theres an upside to that too. It can be very humbling, it can be disempowering, but even within that disempowering aspect, theres something thats probably good about that, because were all going to die. Were all weak in some sense, because eventually were

96 going to fade away. This illusion of invincibility like some 16 year old has, just by nature, and that we sometimes shroud ourselves in, its just not real; were all on the verge of having something horrible happen to us, and if you can keep that somewhere in your mind and then be able to focus on things that are important. Yeah, theres probably some upside to that. David sees the epilepsy as somehow intertwined with who I am, something so inextricably part of himself that he couldnt even unwind it, because its like how I experience emotions, how I think about things. He states, I kind of view epilepsy as part of how my brain is and which always has created certain limitations for me, and certain opportunities for me. But there remain aspects that David describes as terrifying in the content of his seizure experiences. He explores meaning in that context: The kind of seizures I had where they were altered consciousness type of things, obviously thats how my brain works. And heres how I view it, like thats in some sense given me some insight. If all of a sudden I see things as completely two-dimensional, which is what happens, its really scary. I see things as twodimensional rather than three-dimensional in the seizure, when its happening. Everythings kind of flattened out. If I didnt have the personality that I have, when I become terrified at that, if I actually just experienced it, thats some observation of reality. . . . But if I even start thinking about it, I get freaked out, because then I think Im going to experience that. It gets very scary and its just kind of predictive. If I start thinking about, well whats that like when I have that kind of seizure? Then I start thinking about what my brain felt like when I was having it, and then I think its actually happening. Ive had neurologists say you cant control seizures like that, you cant stop them or start them; that may or may not be true. But if Im thinking about how it felt, Im triggering that part of the brain that causes it, maybe, and then I theoretically could have one, and its, oh, it terrifies me. In his final reflection on meaning, David observes: The other meaning I guess I should mentionI dont want to say its the overriding [meaning]but its a theme that Ive seen throughout my entire life. And I can literally go back to a third or fourth grade report card and find it in the report card, which is no matter what Id done and what Ive shown Im able to do, its the lack of confidence, like the fact that I cant do what Im supposed to do. And I just wonder if theres any connection. I think about as a kid, being told you cant go swimming, you cant go jump off the diving board, youre not fully capable, theres something that we have to be careful about with you. You know

97 how that totally plays into [lack of confidence], and has probably had some role in shaping the meaning that Im not capable. Im not fully capable. So, Im a person whos not fully capable. . . . When things get formed early on like that, theyre with you, and no matter how many times you can demonstrate to yourself or other people can point out that thats obviously not the case, youre just, you know. . . . If you have a condition, a medical condition that reinforces that youre not fully capable, then youre going to have that too. David presented an ongoing reflection of what it meant to him to have epilepsy and from such a young age. Issues of security, including fear, confidence, safety, and worry predominated. He felt limited, especially when he was young, by all of the things he could not do, imagined he could not do or become, or was forbidden from doing. In addition, the experiences of the seizures, accompanied by overwhelming fear and a loss of a sense of significance of self and world, impacted his sense of security. At the same time, David wanted to let go of the label of epilepsy and all it stood for; he tried a few times to stop medication, and persevered until he was successful in his early 20s. He mentioned several times fear of possibly triggering a seizure by thinking directly of the experience of a seizure and what it felt like. He reported that neurologists have indicated that is not possible, yet his concern remained. David pointed to many positive aspects of his experience with epilepsy. Being shaped in part by the epilepsy allowed him to become more compassionate, more sensitive to other peoples situations and limitations and conditions. It changed how he viewed people and contributed to his choice to pursue a career in employment law, representing the underdog; it no doubt fueled the desire to reach out to children who are growing up with epilepsy today. He noted that epilepsy, or any other life interruption, brought a humbling effect, an emphatic reminder of true priorities and of the fragility of life.

98 David easily described positives and negatives of his experience; he did not seem to need to or actually slant the picture one way or the other. With relative ease he related his sense of insecurity and lack of confidence, his sense of not being good at relationships; and then with equal ease he noted the positive experience of his career thus far, his sense of compassion and sensitivity to others, his ultimate values of helping people and loving those around you. In the larger picture of his life, the constant challenge to his self-confidence and tenuous multi-leveled sense of security easily called identity and meaning into question; Davids even-handed and open self-evaluative capacity were an appropriate counter balance and likely a great gift to his clients and his work in particular. The structure of meaning that David outlined tended towards a detached stance a stance that allowed the examination of life, personal qualities, and events in a neutral and considered way. He was able to wonder freely about who he is in the world, his capacities and deficiencies. He seemed secure in his professional world, but the world he pointed to was larger than that. He did not tell of being reassured about his identity, rather, he told of feeling set apart. The meaning concepts he consistently identified and elaborated fit well into a structure that emphasized safety through maintaining a cognitive distance. It is possible that this is why the fear of triggering a seizure was so real to him, regardless of the fact that some of the literature points to this possibility. In terms of his experience of seizures, Davids description was direct: terrifying fear and loss of the sense of the significance of the world and his own being. This dynamic structure between an analytic stance and the instinctive fear of overwhelming and terrifying emotion creates

99 a tension that seeks some kind of movement. The qualities of compassion and understanding seem to have been particularly key in his ongoing transformative process. Margaret Margaret is the mother of two grown children and grandmother to several more. She does not practice a specific religion, but considers herself to be a spiritual person and is open to all paths. For the first 15 years of her epilepsy Margarets seizures were not controllable with medication. At that point Margaret was introduced to neurobiofeedback and learned to alter her brain wave patterns. She currently takes no medication and has not had a seizure for many years. She credits the neurobiofeedback and her regimen of self-care with ending the occurrence of seizures. She continues her other alternative and complementary practices which she describes as lifestyle management, including diet, exercise, sleep, and managing stress, among others. Margarets work had always been as a self-employed artist. After experiencing the neurobiofeedback, she got her masters degree in psychology and began practicing neurobiofeedback herself, wanting to help as many others as possible. She has self-published for people with epilepsy and maintains a website as outreach. She has returned to her art as her primary work, but uses it also as an instrument of healing. Margarets story began: At first, I wouldnt believe them. When I had the very first seizure I didnt even know I had it. . . . I was in a hurry . . . [and] worried about time. I was sitting there and the next thing I knew . . . someone asked me if I had epilepsy. . . . Well at first it was almost like a joke, I just couldnt, you knowWhat? I dont have epilepsy! So it didnt sink in. It took quite a while for it to sink in. Before the onset of her epilepsy, Margarets life had been most of the time pretty up for me and easy for me. She was academically successful, popular in school, and went on to marry and have children. Margaret explains the onset of epilepsy:

100 Then all of a sudden, wham! I was down there and I learned what it was like to not be able to remember things, to make a fool of myself having a seizure somewhere, all of it. [It felt like] being the outcast and the one that had to have help, had to ask for rides. Margaret reviews her history and her future from her reference point of the present. She reports of the first 15 years of her epilepsy: Every once in a while [my family] will start talking about something that happened during those times and somebody will say, Well, probably you dont remember that, do you Margaret? And a lot of times I dont. Its just like I was kind of in a fog. . . . I guess what it really makes me feel is how grateful I am that Im not at that place. Margaret frequently had seizures in public and often found herself in embarrassing situations where she described herself as being foggy enough it wouldnt matter so much. She states, Its funny now. . . . My family and I just laugh about it now. She relates one such episode: Once in a while when I would have a seizure, and I didnt know I did it, I would partially undress, Id be walking along and . . . Id sing and dance and do silly things. . . . One time, I was walking home . . . and I went into a seizure. As I came out of it, here was a young guy standing [there] and I came out of the seizure and he said, What happened there, are you on drugs? What are you doing? And then he told me what I had done. . . . I was foggy enough it wasnt too bad at the time. At the beginning she learned to cope with what came her way: It was again it was sort of foggy, yes. . . . I had enough of them, I had a lot of them it was just after so long, I just sort of got used to it. It was one of those things that happened. She describes seizures that occurred without a full loss of consciousness: In fact a lot of times [consciousness] was kind of just on the edge. Most of the time, I was sort of there but I wasnt. . . . Its hard to describe. I guess its like waking up, thats the closest I could say, when you are first waking up and you wonder where you are or something, or if youre somewhere else, staying somewhere else and you wake up in a different bed, like in a motel or something, its kind of that kind of a feeling. . . . It was more just that foggy, dreamy kind of a state.

101 Margaret reflects on the experience of epilepsy relative to where she is now in her life: For years my main goal was to get over epilepsy. No matter if Id ever see that word anywhere or the word seizure Id read about it, Id do research, Id look up and think about it, Id meditate about it, everything. That was my big goal, getting over the seizures. . . . I just hated [the epilepsy] of course, not being able to drive, not being able to work, not being conscious of everything. . . . It just affected my whole life; it changed everything in very negative ways. . . . [Now] I think the whole experience [of epilepsy] definitely made me more insightful just seeing whatbecause like I said as a child and growing up everything was so easy for me and I was usually one of the top of whatever I was doingand then all of a sudden to be like an outcast and so that was good for me. I saw how it was, how it felt to be like that and have people look at you like you had leprosy. Part of Margarets context was her family, both her extended family and her children; she speaks of their critical role: They [my family] were very good. I dont know what I wouldve done without them. They were very helpful, they were just wonderful. They would drive me places whenever I needed a ride and help me out differentall kinds of waysI probably dont know what all they did. So they were very helpful. And it was hard on my kids, it was real hard on them. Cause we hardly made just barely enough to live on. She appreciated her familys support and especially sharing a sense of humor: And my family was good, all the rest of my family too. And we all had a really good sense of humor, all of us, we all were always sillyand I still have pictures . . . and its hysterical! It really helped, definitely! And there were many challenges, including dealing with the side effects of her medications: The last medicine, Tegretol, really made me depressed. It was horrible. And it was the only medication that ever really controlled the seizures which was ironic. I finally thought, Well, Ive finally found one, and within about a week or two of being on the Tegretol maybe a little longer, one day I went into a horribly deep depression over just some little thing, and I even knew at the time it wasnt even that important, and my daughter was there. And I went to bed, I was lying in my bed crying and she came in and said, Whats wrong? and I said, I feel like killing myself, and she says, What! What for? And I said, Ive never felt like

102 this before in my whole life, and she was smart enough, I think she was about 13 or 14, to call the neurologist and she talked to the nurse, and the nurse said, Well is she on Tegretol? And my daughter asked me and I said yeah, and [the nurse] said, Well, thats what it is. So then I started looking up the side effects and [depression] is one of the big side effects. So then on my own, I started cutting back on it, and thats when I really got serious about it. I was already doing biofeedback work. . . . I just worked at [the depression] and like I say as I cut back on the medicine it wasnt quite as bad. . . . But by that time I was getting so disgusted with medicine and doctors that I wasand I really hated them all for awhilevery rebellious, but it wasnt their fault of course. But I got so tired of [them], you know if they wouldve said, Here, take an anti-depressant, I wouldnt have. So I fought it. In this process Margaret claimed her autonomy and independence: Ive thought back to that and I think well some people just are [independent] and some arent, and I am. Definitely am. And thats why I didnt do well in marriage, really. Because Im so independent and Im that way with everyone, even now, even my friends. I have to be doing my thing and want to be independent like that. I was that way even before the epilepsy. Like if I was dating, I have talked to people about that. I didnt want a steady boyfriend, if I had some boy that I dated all the time, I didnt want him hanging on my side. I wanted to be able, you know I said I just, I dont care, I just want to do my thing! And I was that way. About it, and I am now, too. At this point in Margarets life, she looks back and appreciates the growth that she experienced as a result of her epilepsy: It made me very aware of my health and whats good for me and what isnt. And because I was almost forced, no I wasnt forced, but I knew if I wanted to get over the epilepsy, in other words, I was going to have to do all those things. So little by little . . . I started to look, figuring out, getting better habits. . . . The whole total outcome is that I am very healthy for my age. . . . So I eat well, I exercise, I still try to keep my stress level down, I hardly ever drink. . . . In other words, anything I can think of. It made me so very interested in health, I was anyway, somewhat but it really did. So I think it made me healthier. But at that time she still chafed at the limitations imposed by her epilepsy: I felt disabled. Because I there were so many things I couldnt do. Because I was restricted from so many things. Everything I wanted to do and oh I dont have a car, I cant or Iyou know that type of thing. Experiencing limitations, oh I dont like it at all. No.

103 Margaret brings this back to the present by describing a transformation through accepting some limits: Im maybe more tolerant of other people too. Realizing that you cant always do just what you want to do. When I was doing the biofeedback work I could see what it was like having other disabilities. And it made me more tolerant there. Whereas before, because things were so easy for me as I grew up, I probably wouldnt have been so tolerant like that. I wouldve said, Well, just do something about it! Having gone through those years of uncontrolled seizures, Margaret speaks appreciatively of lifes qualities: I love beauty of all kinds . . . I love to go to flowers and look at and I love to go and look at art. Just learning something, anything like that. . . . I like to get together with people, like I go down there to the coffee [shop] and have that for an hour, just talk; I like to joke around, I like a lot of people that like to tell jokes, I like that. . . . But I didnt always [find the positive], see, when I was so depressed, I didnt. Again from the present, Margaret acknowledges the normal ups and downs of life and mood, and describes more current challenges: Not that I ever never get depressed, we all do sometimes. But I havent really been very depressed for a long time. I guess Id say I probably get more angry at times now, or no, no, more frustrated. . . . I think seeing [other people suffering], thats still the hardest thing for me, seeing the people I love or anybody really going through bad times and realizing how little I can do about it. . . . I at first when I got over the seizures and everything I thought well I can probably help everybody that has epilepsy, Im just going to wipe out epilepsy. . . . Then finally, finally I had to finally face that, everybody isnt like me. In fact, very few people I guess are that motivated to do something about whatever it is, that they need to change. They want to change. Regarding the meaning epilepsy has brought to her life, Margaret has this to say: I think what it did was show me that especially after getting over the seizures, saying, Okay, if you can conquer this, you can do anything! . . . [That was] courage and perseverance, both you know, really stickingsaying if you really want something badly enough and if youre willing to give up whatever you have to do to get it, that you can probably get it. Maybe not everything, but you can do a lot of things that way. . . . So realizing that, if we and I think anybodys that way, if we want something badly enough, almost anything, we can do it. . . . Probably at the time [of my seizures], I went through all the things that everybody

104 does with it: why me, and its horrible, and so forth and so on. I felt sorry for myself, and then like I say, later, realizing what you have to do and that it isnt all just like I said, just an upward thing. Like Id go this far and then pretty soon Id have a drop and then this far and then another onetwo steps forward and one back, that kind of thing, and realizing that thats the way almost everything is. And none of us want it that way! Margarets epilepsy was a painfully limiting experience, one over which she felt no control and which took her completely out of her life as she had known it. All of a sudden she was an outcast, she felt disabled and very aware of all of the things she could not do. As Margaret told her story, there was a quality of holding the story at arms length, a distancing, which served to obscure whatever painful emotions were typical of those years for her. Seizures, memory problems, and the like were some of those things that happened. Instead, she told of the humor that was so important to her; of her family who was incredibly supportive; and of the positive changes for her, especially having gained insight and tolerance for other peoples struggles and having attended well to issues of health and well-being. She had always been independent, had always wanted to do my thing, and hated feeling limited by the epilepsy. She fought it through education and health practices, and made it her mission to overcome epilepsy. Fighting the epilepsy and eventually making her own medical decisions were Margarets way of implementing control. She literally learned to control her brain waves. Valuing her independence at most any cost allowed her to experience control on the long portion of her journey where she was not free of seizures. Margarets incredible energy and focus to break out of the hold of epilepsy spoke to her motivation and willingness to change. Seeking change was a likely companion for chafing at limits, and, in this case, both served her very well in facilitating her remarkable transformation. In addition to developing tolerance and understanding, many small

105 transformations happened for Margaret as she undertook her journey to stop her seizures and build a different life. One was simply the realization of her differences: not everyone wanted or was motivated to work for change, not everyone had the same reaction to limits, everybody isnt like me. A related transformation was accepting that she could not always do what she wanted; this was an aspect of developing realism about genuine limits. Her awareness and appreciation of beauty, a vital link to wholeness, increased. Margarets world became much less black and white and more imbued with the inbetweenthe two steps forward and one step back that were not necessarily liked but were real. Margarets descriptions sounded overly obvious: who does not know they cannot do anything they want? However, she was making clear a meaning-making structure that celebrated possibilities and options and that looked to the positive, appreciating humor and all the good things that life can bring. The transformation was towards an increasingly empathic stance. Margarets love for beauty was reflected in her career as an artist, her empathy in having employed her art specifically for healing. She was working with people where they were, rather than impatiently pushing them to change according to her own model. Monica Monica was raised in a conservative Protestant religion, which she no longer practices. She considers her work to be a form of meditation. Her epilepsy onset was shortly after coming out of a disease-induced coma, at the age of 18. She has not had a seizure in 38 years and does not take medication. Monicas verbal style is one of exhortation. The short sentences become fluid, filled with emotional impact. Monicas

106 language hearkens back to the language of her Christian upbringing, a language that is part of her lived experience. Monicas story begins: [It happened all of a sudden,] I was in a coma and I was diagnosed following that, I was 18 when that hit me . . . and I was a vegetable. It had erased everything I ever learned, in my life. And I was having seizures at least ten times a day, that generalized. And that went on for years. . . . It was a very bad scene. They had pronounced my case hopeless, and told my parents that they needed to put me in a long-term care facility. . . . What a hard decision that was for my parents. It was horrible, because they were financially going to be responsible for me totally once they made that decision, or I was going to be tied to a bed in a room with 100 other people for the rest of my living days. And they just struggled with that, you know, and decided that they would take me home. That I had a right at least to have a chance. So, if it hadnt been for that decision, Id be dead. The life expectancy for cases like mine was less than five years, at the state hospital. So, very interesting. And considering how far Ive come back, its really interesting. I havent had a seizure in over 38 years. And drugs never helped me. So, it was interesting. I really couldnt quite understand why that needed to be happening to me. But you know what? I have to tell you this before we go further. Im glad it happened. Because there are things I know that I could not have known unless I had gone through all of that. In the immediacy of her story, Monica comes quickly to the pivotal experience that invited her through her devastated condition to a path of transformation: Well, I have to tell you a quick story. On the day, and it was approximately two years into treatment, and no change, and sometimes worsening of my condition, they pronounced my case hopeless again. And they really left me with a sense of no hope from that visit to the doctors, which they often do. God, theyre good at that! And I went home, and my parents dropped me off at home. . . . And I sat there on my parents couch saying, You know, God, I really cant fathom not being able to impact a change in this. I cant live with this. This is not a lifepromoting illness. So I was really like, Just give me a painless way to die, Ive been through so much pain, Id really like to end this. And so I was sitting there trying to think of a way to end it, when I all of a sudden, a voice came to me, and it saidand Im going to tell youas opposed to God, I think this was my brain talking. And it said, Oh! So youre feeling sorry for yourself! I went, Yes, I am! Yes, I am! And then it said, Well, Ive got news for you. You were told the reason you cant get better is because [the seizures are] caused by the brain damage. Well, Ive got news for you. The brain damage is there all the time why arent the seizures?. . . At that moment in time, what it imparted to me was the concept that something I was doing was triggering that event, and/or some deficit that I had that I couldnt handle, like light or sound, that was affecting this.

107 So, what it engendered in me was a sense of hope. . . . So, anyway, hope began to grow again in my heart, and I looked at my life and said, Im going to try to do something different. I dont know what yet, but Im going to try and figure this out. Relating the beginning of her new work, she explains, See, one of the things I was trying to do was relearn how to read and writevery frustratingwhen you had been a very good student. And now you are a child again, intellectually, and no memory. So, I just aand also the seizures were erasing what I was trying to learn; it was very slow, the process. But the next morning I got up, and I had been left some work by my parents to accomplish on those goals, of re-educating myself during the day. And I became frustrated very quickly. And in the past, when I became frustrated, I would just keep working on it. But this time, I said no. I see that there is someand Ill use my present day terminologycorrelation between this event, I mean this feeling, and a seizure occurring. So Im going to go do something else. So what I did is I got up and I went and made my bed, straightened up some things and pretty quick, I wasnt frustrated anymore. But more importantly, the thing I was trying to learn all of a sudden I knew. And thirdly, I didnt have a seizure. And I was excited! And then, interestingly enough, I had a seizure! Because I got excitedI couldnt handle that either! So, but I was, and I knew it meant something, I knew it was important, what I had just done. So I continued along that path. It took me, it was very quick, actually, considering the severity of my situation, and how nothing had impacted it. But the way it progressed from that day forward, was in three months I had dropped from 10 seizures per day to 1 a week. And in 6 months I had dropped to one a month. And in a year, I had dropped to one, a year. And then I walked away from it, and my last seizure occurred on March 10 of 1969. . . . And what I did with my life and what Ive always done, and what I did even in discovering my wellness, was to meet each thing as it came, trying to understand it for what it was, and figure out how it needed to be dealt with, regardless. And I did not run away from any challenge. She illustrates her tenacity in pursuit of her goals: How I saw myself after [the epilepsy onset] is that I was a broken person who couldnt stand on their feet for very long, and was totally rejected. And that was initially, the first five years. But after that, I said, I am just as good as I was before. I just have to work harder. And I did. And Ill tell you, there was a lot of public opposition to my becoming a doctor. The dean of the school I went to . . . called me in at the end of my first year, and said, I hope you dont think were going to let you through, get through this. I hope youre not deceiving yourself to think that. And I looked at her and I just said, Why not, if I can do the work? [She] said, We dont like it when the patients cross the line. And I just took a deep breath, and I looked at her and said, You know, Im sorry you feel that way, because I have every intention of getting

108 through this. And I dont think you can stop me. So anyway, that was an interesting moment. In the context of Monicas professional life, the fact that she has epilepsy and has overcome her seizures is well known. As far as anyone else knowing that she has epilepsy, she states, Because Im so excited about it, it doesnt effect me much at all. She goes on to say, When people are victims of it, it affects them terribly. Its one thing to have a disorder and not be having it. And since you can never get over thisI have to always, I dont always tell people, ok, but in my professional world, everybody knows. They have to. Because its all wrapped around my work. So, I get different reactions, you know, I mean I think some people think Im whacked-out, that Im not more troubled by the event of having this. But I look at them and I go And you are stupid! Because you dont understand the importance of this event! The reason I have such a strong opinion, if you look back in history, youre going to find an epileptic at the helm of every change on the planet earth that involves humans. Wonder why that is? Its because theyre connected. Its like having a red phone to God! Its what it is, and I am telling you, we are justThis is a big challenge, and if you want to know my deepest truth, the deepest truth is were given this as a challenge and if we can overcome it we become workers. It makes me feel like a true contributor, like Im lighting candles of hope in the world for our continuation, which if we dont get some hope here, were all dead! So, Im quietly you know just quietly working in the background trying to change things. She elaborates her own transformation, highlighting the contrast between victimhood and self-efficacy. I was so depressed. And I was so sad and afraid all the time. And I lived in fear of an event happening, which of course it was going to happen quite often! Which Im sure my fear helped to produce it! It was a vicious cycle of self-injury. Because I did not know how it worked. [And now there is so much] that Ive learned about humankind. [For instance] the fact that Ive learned how to stand on my own. When you are rejected by society, okay, utterly, no real thing that youve done wrong, if you come back, you have to come back with a confidence that says you know, Im important, irregardless of society. I will not let other people be the measure of my work. I will decide whether Im worthy. And my work will decide whether Im worthy. So, I realize that most people dont know what drives anything, theyre just you know, sheep, going around, you know, singing somebody elses song. What I began to do is sing my own. And my own was much more humanitarian.

109 Monica maintains a realistic view about living with epilepsy. She does not hesitate to acknowledge her physical limitations: Right now, in my life, the most challenging thing I have to deal with is circadian time. Im traveling all over the world . . . and it puts me at risk. Because it interrupts sleep. And sleep is the number one trigger. If you miss sleep. And I have to deal with that, thats not something I can just shine on. And I have to take very good care of myself in those situations. So, that is the biggest thing I deal with right now. At the same time, she reinforces and elaborates on the experience of epilepsy as a gift and a blessing in her life, her life as a microcosm of the state of humanity. She states, [Epilepsy] has broadened my scope. Well let me explain it to you this way. Going from consciousness to unconsciousness is a long trip that we make very quickly, but we are aware of all the places in between here and there. Most people that make that trip are dead. Were the only ones that come back. And Im not just talking about fainting, Im talking about unconsciousness. It is a different place. It is fathoms different. And an anesthesiologist would know that, because they take us down to various fathoms below our conscious level and hold us there, but they know its an endless pool that leads to death. We go all the distance, through the portal and come back. So often, my patients ask me, Where is it that I go that I have to look back to see reality? I said, The other side. Now thats an interesting thing, because what does that suggest? It suggests that youre getting knowledge, you are being given information, whether you understand that or not. So, [epilepsy] has introduced me to the breadth and scope of humanity to a greater degree than most people will ever know exists. Most people come and go from sleep and they are in a world that has, you know, very linear, a to b, kinds of progressions. Mine now are non-linear and circular, and systematically expanding. And I see a much different world than most people see. . . . Well, thats what its done, its expanded my awareness of what it means to be a human. Thats pretty big. . . . I mean, what is it? And why do we have it? You know, its one of the biggest unanswered questions in the universe: what is consciousness? Well, people with epilepsy are a key to figuring that out. Because they can lose it! Monica describes what is a spiritual practice, a contemplative process of transformation through the entry point of seizures. The goal of everything I do is to get over the fear, and get over the anger, and get over all of the things that people react to naturally as humans, ok, that make them the victim, and turn it around into something that can help them. Like for instance, if you do not have the seizure and you stay conscious during it, and that energy passes through your body, then you have one hundred percent knowing of what you just picked up on. If you lose consciousness, then you lose the message.

110 So if a seizure is really enforced enlightenment, which it may be, then the only way to receive the enlightenment is to stay conscious. And what does that mean? You have to remove your emotional response to your bodys experience of this out of control-ness in order to stay conscious. Now Im going to give you something right now that I think is really important. The first recorded seizure on the planet is in the Bible. And its probably not the first seizure, but its the first recorded one. In Ezekiel. Wouldnt you have a seizure too? If you had just had this insight of the future of man with tall glass buildings, and flying things in the air, and you had never seen glass before? I would fall and writhe at the well myself. So, that was very helpful to me to read Ezekiels experience. I understood every word of it. I know most doctors, I mean in theology, do not. So, you know the truth is hidden from the blind, but the knowing read it and they go, oh my God! I would have one too! Well bless his heart, he was the really, he not only confirmed my information, by his experience, but he also let me know what was happening to us. What happens to us, is, its the same for all people. If God does exist, and hes trying to talk to everybody all the time, and the block-headed ones, they dont even get it, okay. They dont have seizures. But the sensitive ones know something is happening and are frightened by it, or angered by it, because its intrusive. And feeling very out of control. So the sensitive ones are the ones that get the seizure in response to enlightenment. Attempts at enlightenment. Think about it. And I had a lot of brain damage, and we can point to that brain damage six ways to Sunday; that wasnt what was happening. That brain damage just made me that much more sensitive. The seizures were actually a response to something bigger. Monica addresses this interviewer and then moves on to underscore the necessity of transformation: Do you identify with this view? Do you see the truth in it? Or do youI mean, its so different than what were told by medicine, you know, the medical world, to view this. That some people just cant conceive that this could possibly be true, it has to be proved to them over time. But Im going to tell you something, something thats the most important discovery I ever made. Seizures are a learned behavior of the brain. Once it has experienced one, it marks it, and it knows exactly how to have it. And if you engage in behaviors that hurt it, it will invoke one. Like worry. Worry is a train going around a circular track with no answer, because its past or future. And that hurts the brain because it ties up all its neuron synapses on something that has no answer for it. How frustrating is that? The only thing we have is whats happening right this second. What happened before and what comes later is not even important. It has no meaning until you get there. Its just wishful thinking. She elaborates on her own transformation and her role as helper:

111 And I tell you, theres a lot of proof for what Im saying. But I, for one reason or another, Im the one that had to put it together, because I needed to understand this inside and out. And I have solved this problem for me. And I have helped thousands of others solve it. And on top of it, and introduced them to the concept of how important what theyre going through really is. That its not just a simple illness, as no illness is! Plato was right: Illness is nothing more than a dis-ease with self. And that goes for cancer and everything. We can kill off our organs through dissatisfaction within us. It makes us do things that hurt ourselves. So, anyway, and that puts a lot of it back into our control, you know. So, I like that, I like knowing that Im the author of my fate. And I can take this body, even though its in its 60s, and make it okay. And you know, be just as enthused about living today as I was when I was five. Yes, and you know, I have a different attitude about failure. I welcome it. Because failure is, leads to success, ultimately. It means youre in a learning track, unless you give up. Now, if you give up, then youve failed to learn anything, and you fail to complete. But I had so many things I had to learn that I failed a lot, and I had to keep going back until I could figure it out. But, I first had to make peace with the fact that I failed. Which was very intrusive in terms of disappointment, sadness, and just all of the emotions that are raised by that feeling. And it helped me tame my emotions. And thats good. That was needed in my case. My area is to do what Ive been given to do to the best I know how. And not to shirk on it. So, if everybody did that, what kind of world would it be? It would be a different world. But most people dont do that. Most people are trying to make a killing and, and all theyre doing is destroying themselves. If I could get the world to do one thing, it would be all of them stop at the same moment, and sit down and take a deep breath, and try to think of nothing for a moment. Monica identifies hope and self-confidence as essential ingredients in the transformative process: But you see that there are many, many things that could be done, that could change everything. And I believe a natural disaster of large-enough proportions to put mans life on the line, like evidenced in the movie Armageddon, would do it, you know, that Bruce Willis movie? It was very good, it was about a meteor that was going to hit earth and the whole earth came of one mind, in a very short period of time. Because they had 18 days to live! But then, Bruce Willis saved the day and blew up the thing and it missed the earth and people went forward. So something like that could change the world in a day. When all hope is lost, then people find something bigger. So, hope lostand maybe this is the key about epilepsyhope lost is the intro to finding God. Finding God is hope restored. And you know, theres only two common denominators in epilepsy, and you might find this interesting. One is we all fall on our faces someway. And the other is the loss of self-confidence. And do you know what the definition of confidence is? The ability to get from point A to point B on your own power every time. The

112 reason we lose it is because we dont meet the definition. We fall on our face on our way to B. Isnt that interesting? Monicas final reflections in the interview dwelt on consciousness and identity: And were in this body, consciousness is, but as epileptics we know we can leave the body, rather abruptly, and we can find it again, and get back in it. So its a vehicle. Nothing more. I wish Id gotten a Jaguar vehicle, but I didnt! I got a Volkswagen! The good news is, its easy to fix! I have seen so much! . . . And most of the world pays a lot of attention to the vehicle, and hardly any to the consciousness. But how long is it going to take for people to realize [the body is] nothing? Its really not very much. I mean it is going to pass away and if you havent attended to the part that does go on, than it is going begging, and you know, just think, a lifetime is very short. But if you measure what can be done in a lifetime, its unbelievable! . . . And you know, thats the only purpose we exist is to be helpful, truthfully, to each other. Anything less than that is a waste of time. So, I think that people need to understand why theyre here. I dont think most of them do. I think most of them have become narcissistic. And that is not a redeemable quality. And it just shows that they feel like theyre not loved. You know, isnt that interesting, I mean, I find that interesting. But heres the fun part. If this is my identity now, and Ive come in line with it, how much more will I come in line with the next one? Which is the benefactor of this one. Its something to look forward to, not to be afraid of. Unless you have filled it full of fearful things. I would prefer not to do that, you know, I prefer to leave a legacy for my future self of having met the challenges of this life. And if you do, and thats what I tell my patients, youre just needing to meet the challenge of this life! Now, quit whining and lets get on with it! You know? Thats terrible, maybe, but its the truth. Were just meant to do the best we can to meet the challenges. And if we do that, then were going to really make some progress. And I think thats exciting, personally. Who knows what well do next time! Monica spoke constantly of what could be done; of the urgency to do the work in front of both her and people in general; and of becoming workers and lighting candles of hope, which she pointed to as her transformative agent and its necessity in the world at large. In viewing epilepsy as a gift and a challenge, she detailed the path of her own transformation thus far and of the steps necessary for others to take as well. For her, taking charge of the life that had left her feeling rejected, broken, sad, afraid, and

113 depressed was the first step, even though she did not understand and did not know where it would lead her. The ability to take charge was for her instigated by a flicker of hope. Once Monica made that first step, the same strengths that fed her pre-epilepsy life came to the fore: personal responsibility, self-efficacy, facing all challenges, figuring things out as they appeared, trying to understand, acting on her understanding. She had to work harder than others, but that did not matter. As she told the dean of her school, I dont think you can stop me. Monica demonstrated high energy, focus, and an unstoppable urge for getting the job done. She equated evaluation of her work as a signal of her worthiness, and self-confidence with facing every challenge in her path. She shook off any potentially negative impact from societys judgment through her observation of not having done anything wrong in getting the epilepsy and further, of coming to see it as a gift and an invitation, something that set her and others apart in a positive way. The larger context of God, life purpose, and the need for hope and ongoing transformation were essential elements in Monicas life. She echoed contemplative religious traditions in describing the need to drop emotional reactivity, to stay focused and awake even while feeling out of control, and to bring into consciousness and learn from whatever might be witnessed while in that state. For Monica, the emotional reactivity around failure appeared to have been critical; working with that reactivity helped her to tame my emotions. Monicas work was tireless, she seemed constantly aware of the limits of time and the need to get busy, to meet the next challenge: quit whining and lets get on with it! The meaning concepts that were continuous in Monicas interview were selfefficacy, efficiency, focus, and goal accomplishment. Work was presented as an essential

114 aspect of who I am; in addition to being a meditation for her, it was also a call and a duty. Control, authoring her own life, was important; one aspect of this was defining success and failure on her own terms. Monica found a rhythm, a flow where her passionher mind and her heartallowed her to live devoted to the call that she heard in her own recovery and willingness and ability to support others in their intrinsic wholeness. The meaning-making structure was evidenced through a perspective that demanded successful work and evaluated most things accordingly. Confronting her emotional reactivity through facing failure was significant in this perspective. In describing her transformation, the shift she defined was from one where she was the ultimate author to one where she was the author in the service of something much greater than herself. Control played a large role along the way, but at the end she stated, Were just meant to do the best we can. Control and self-efficacy were important, but were ultimately in the hands of something greater. Conclusion As noted, the analysis contains elements that might otherwise be described as interpretive. This researcher had postulated that structures of meaning would appear in each persons narrative and be available through analysis. The assumption that the NPCS would be an effective tool for first identifying structures of meaning, rather than therapeutic modality as it was initially designed to do, did not hold for reasons discussed above. In the case of this research, the identification of meaning concepts throughout the interview session did illustrate personal transformation. Concepts of meaning are the individuals analysis of the trajectory of his or her own life, specified, in this case,

115 according to the experience of epilepsy. Analyzing the data for evidence of a meaningmaking structure became a secondary process, based on the concepts of meaning drawn from the interview data. The structures of meaning-making and identity are revealed in the repetition of the meaning concepts; the transformative shift, in the changing perception of the play of these concepts. The qualities of beinghope, gratitude, understanding, compassion, and so onwere the fuel for the transformative processes over time. As is true of all narrative analysis, the researcher is interpreting an interpretation and must beware of overstating or otherwise using the interview content towards his or her own ends. Every attempt in this analysis has been made to stay true to each narrators own story, to his or her self-construction as apparent in each individuals discussion of the experience of epilepsy. The issue of validity and reliability is treated in the following chapter.

116 Chapter 5: Discussion The analysis of the interview data revealed several meaning concepts and one basic structure of meaning for each participant. This chapter looks more closely at the relationships among participants meaning concepts and structures of meaning. After this in-depth look at the research results, theoretical and practical implications for meaningmaking in epilepsy and for psychology and transpersonal psychology in particular are discussed, and a brief summary of the limitations of this study and the questions it raises for future research are presented. Concepts and Structures of Meaning The research results demonstrated the intimate linking of each persons meaning concepts to his or her structure of meaning, how the constellation of meaning concepts defined the structure, and how transformation was a perspective shift within that same structure. A key element in working within the meaning-making structure is tracking the qualities of beingthe fuel for the perspective shift. These varying structures and processes of meaning-making made clear that there are a variety of everyday paths that serve personal transformation and increased capacity to integrate the experience of a disruptionepilepsy or otherwiseinto a human life. Each structure and its associated meaning concepts had a consistent coherence and presence throughout each persons narrative data; each had its own integrity. The results indicated the constellation of meaning concepts within one structure are not compatible with the next, for example, a pervasive sense of loss, lack of connection, and sensitivity to suffering is not coherent with a structure based on power, strength, and control. Within each subject there is a pattern, a cognitive process that creates a container

117 for a persons world or identity and a set of attention practices that focuses and evaluates all of the events that happen in his or her world. The identity is the structure of meaning and the placement of attention is the meaning concepts vis--vis the particular event. The small sample of narratives in this particular research would indicate that an event powerful enough to affect a persons identity does not change the structure itself, but alters the relationship between the identity or structure and the meaning concepts or habitual placements of attention. The relationship becomes dynamic, the placement of attention broadens and deepens, and the individual becomes increasingly flexible within all manner of life events. Looking beyond this ongoing recreation of each authors identity, there rises the question of who is witnessing the process, who within each participant is able to step back and elucidate the transformation, for example, from a person who values strength to a person who also values the truth of vulnerabilities and weaknesses, or from a person who looks primarily to the future and the positive to a person who also accepts the limits of today and the suffering or pain that it sometimes contains. The capacity to witness appears to be inherent in the process of transformation and may possibly point to an enduring presence, perhaps a spiritual capacity, in that transformation promotes a more whole self. Within this pool of 6 participants, at least five structures and processes of identity and meaning-making are evident. The narratives of both Bill and Margaret have strikingly similar structures and concepts of meaning, notwithstanding unique and markedly different narrative content. Both participants look to the positive, the possible, and the abundant; tend to chafe against limits; and avoid attending to and dwelling on

118 suffering. Both underwent processes of transformation that brought them increasingly in line with the realistic limitations of everyday life and a greater tolerance for witnessing suffering with a heartfelt sense of compassion. Margarets story of her own transformation ultimately led her to reach out with compassion to others without the expectation of change on her terms. Bill chose a career where he was exposed to the suffering of others on a daily basis; his experience of epilepsy increased his capacity to be present in compassion in this and no doubt other environments as well. The possibility of two individuals holding the same or similar concepts and structure of meaning raises the question of whether there might be a limited set of, predispositions at birth to, culturally distinct, or otherwise patterned set of processes and structures. Comparing the content of each participants meaning-making process with age of onset, this sample shows that earlier ages of onset (David, Barbara, and Anna) point towards a lack of self-confidence and/or competence and at least some indications of an external locus of control. These qualities are evident as these individuals look back on their early lives; from the narratives presented it might also be that David, Barbara, and Anna had the most difficult time navigating the challenges of early adulthood. Looking at degree of symptomology reveals a slightly different picture, possibly due to some participants having enormous differences in symptomology over time. For instance, Monica and Margaret were plunged into a deeply transformative time with the onset of their more severe and less controlled epilepsies, changing the trajectory of their lives. David with onset at age 7 and Bill with onset at age 30 share something very similar in terms of mild symptomology and a more subtle transformative shift over a relatively longer period of time. Contemplation of or attempting suicide seems pretty clearly linked

119 with more severe symptomology; Bill and David were the only participants who did not bring the subject up. It is also not clear whether or not sex plays any role in process and outcomeBill and David are also the only participants who are currently married and report a more typical career pattern than the others. The individuals who were willing to share their stories for this study may well be different than people who would not want to share their stories and experiences of epilepsy. Every participant in this study wanted to do something to help promote education, reduction of stigmaanything that would improve life for people with epilepsy and those in their lives and possibly help those who are or would become care providers. This quality alonewillingness and ability to give time and energy and reveal deeply personal storiessets this sample apart from some others with epilepsy. The participants were also very articulate. Not everyone with epilepsy is, and this research does not address assessing for concepts and structures of meaning in a less articulate, less educated, less privileged population. Quite possibly, the results would be different. Given the significant amount of advertising for this study, surely others were qualified but did not respond; these others are an unknown variable in terms of this studys results. The beautifully varied processes among the participants may point to some human need for a social process that generally benefits from multiple perspectives or for a community that can thrive with members attending to a broader spectrum of needs than it otherwise might do. The presence of multiple patterns is a finding that celebrates the multiplicities of human nature and the ecological resilience of diversity.

120 Implications for Meaning-Making in Epilepsy The diversity of concepts and structures of meaning-making among these participants indicates that individuals with epilepsy are not held by some neurologically situated impairment that trumps the unique reality of each person. However, this study indicates that seizure content, when remembered, is an important consideration in a therapeutic or other meaning-making context. The content can be an element that propels change or that stops a person in the process of transformation, building defenses so that the familiar cannot be disturbed by such distressing experiences. The effort in providing psychotherapeutic or other assistance to an individual with epilepsy is to promote the health and healing of the psyche, including a possible transformation in the view of the body and its social implications. Do Rozario (1997) spoke of the interruption of disability or chronic illness in a persons life and the need for a dynamic cycle of progression from an outer world of dualities, separateness and form, to an inner world of reconstitution, unity and wholeness (p. 433). This would be the dynamic named in this study between the concepts and structure of meaning-making; the concepts of meaning first introducing limitsconsciously or notand the dynamic evolution over time to an increasingly free and whole sense of identity and who I am. She further discusses her proposed model of wholeness and reconstitution as pointing to the possibility of an implicate order of consciousness or wholeness in which people who have undergone some crisis or critical incident in their lives may be able to access and experience a deeper reality or flow in life (p. 433), which would be the process of transformation as identified in this study.

121 Psychosocial sequelae are included in the definition of epilepsy provided in the introduction. These would include issues of stigma, though stigma did not figure predominately in the interview narratives. Difficulties with stigma predominate among children and young adults with epilepsy, whereas problems with cognitive impairments, employment, transportation, and fear of a break-through seizure tend to predominate in the adult population (Fisher et al., 2000). Among these narratives problems with stigma do figure more prominently in those participants with earlier ages of onset. In promoting narratives of healing and transformation, it would be important in the therapeutic environment to listen carefully for the social impact of epilepsy and how that plays out in the individuals meaning-making process. As previously mentioned, the participants in this study experienced not only a wide range of severity of symptomology among themselves, but also several individual participants experienced a wide range of severity over time. The issue of psychological control in epilepsy is noted in several studies as a factor of well-being; for example, Gehlert (1996), Sander (2005), Velissaris et al. (2007), and so on. It appears that women are more susceptible to what Velissaris et al. termed pervasive loss of control, evidence of which is increased anxiety, depression, and suicidality. As Barbara described very well in her narratives, there is a bi-directional relationship between seizures and depression and other mood symptoms. As Monica noted, reducing emotional reactivity and other stress reactions is a key to improving seizure control. Control as a qualitative dimension appeared in every participants narrative in this study; control appears to be an issue which needs to be understood by any healthcare provider through the perspective of the meaning-making structure of the person with epilepsy. In looking at the issue of

122 perceived loss of control and a persons potential shift in self-perspective, Velissaris et al. noted, This finding adds to widespread reports of growth following a crisis, and supports the notion that a decrement in psychological functioning must precede positive psychological change (p. 231). Put more simply, Margaret reported being willing to live with the two steps forward and one back, that kind of thing, and realizing that thats the way almost everything is. In this study the qualitative dimensions of self appeared to change with the process of transformation, including perception of control. The sense of I am somehow got larger: more flexible, deeper. Velissaris et al. observed, Reports of positive change following pervasive loss of control also highlight the complex and paradoxical processes involved in the reorganization of a persons sense of self after illness [onset] (p. 231). Control would be a key element to explore in a therapeutic process. Specifically within the psychotherapeutic environment, this study suggests an alternative therapeutic process to modalities that indicate facilitating cognitive deconstructions opposing or otherwise invalidating the clients cognitive map or worldview, or focusing on object-relationally derived models of change. What this research study suggests is naming, exploring, affirming, and understanding the clients cognitively based worldview, mirroring back to the client the worldviews inherent structural validity, and seeing with the client a next step, facilitated by an understanding of the dynamics of the clients process of meaning-making, thereby promoting positive integration and evolution. Attending to qualities of being valued by the client and working with emotional reactivity along the way would support psychoemotional and psychospiritual integration. This process, especially working from the cognitively based

123 perspective, can be construed as a variation of narrative therapy; however, this researcher would propose that working with a client via meaning concepts and meaning-making structures is a more focused evolution of narrative therapy. This study looked specifically at cognitive structures and processes; however, in consideration of the therapeutic process, it may be very beneficial to selectively add tools that address non-cognitive aspects of the whole person. These could include creative expression, such as collage, drawing, clay work, and so on. Body-based work is yet another access point: yoga, dance/movement, sound, singing, among others. These tools would complement the processes mentioned above and would invite more clearly the transpersonal value of integration of body, mind, and spirit. The therapist can use understanding processes and structures of meaning for selfwork as well as understanding how his or her meaning concepts or placements of attention can help or hinder work with a particular client. Self-observation is critical in this helping relationship; naming and identifying ones own process of growth and evolution brings clarity, permitting more effective use of countertransference in the clinical relationship and a greater understanding of the clients therapeutic transference. The above descriptions of possible ways of using meaning-making structures and processes within the therapeutic environment do not specifically address working with individuals lacking a more or less solid sense of self or individuals who suffer serious mental illness. If a person offers the possibility of benefiting from a therapeutic process, then the therapist can work to identify structures and processes of meaning-making used by the client. This would allow the therapist to work more consciously and carefully within a clients limitations and to assess the appropriateness of promoting a

124 transformative process or to identify ways in which the clients identity might be shored up and affirmed. The process of transference and countertransference and the insights gleaned from identifying a structure and process of meaning-making hold true regardless of the level of mental health a client presents. Implications for Transpersonal Psychology Transpersonal psychology holds steadfastly to the value of the persons wholeness, regardless of infirmity. For those who struggle with any aspect of a marginalized identity, identifying structures and processes of meaning-making and the transformative capacity they represent would provide potentially useful tools for developing a more whole and more hopeful sense of identity and for facilitating a healing process. Employing structures of meaning allows not only an efficient way into the dynamics of a persons identity but also promotes the individuals own consciousness of his or her process. The capacity to self-observe is important to the process of transformation and being able to name evolving elements of that process adds clarity and impetus to inner work. Having a map of ones cognitive or narrative structure of identity is a window into the psychic structures and facilitates the ability to explore a greater range of access points to a more developed state of being. The individually lived experience of each structure would add to the understanding of the diversity of human community and ways of finding greater wholeness in life, regardless of physical condition, socioeconomic status, or any other circumstantial phenomenon. Grasping this human process speaks to evolution of consciousness and of increasing levels of transformation that are possible across a lifespan and in the community. This is at the heart of transpersonal psychology.

125 The seizure experiences reported in narratives of meaning-making in epilepsy might potentially contribute to a growing body of scientific literature on the problem of consciousness; Monaco, Mula, and Cavanna (2005) stated this content can offer precious insights into altered states of consciousness (p. 157). These authors highlighted the dynamics and differences between levels of awareness and content represented in seizures and their potential as a key to defining neural substrates of various forms of consciousness. Perhaps such studies would also reveal how it is that meaning and purpose are generally construed as relating to a persons . . . sense of . . . interconnectedness with self, others, nature, and an ultimate other (Sessanna, Finnell, & Jezewski, 2007, p. 256), whether that ultimate other may be defined specifically as God or very generally, such as a higher consciousness or a cosmic force, and so on; the sense of a presence larger than human consciousness and dissolution of normal boundaries represent a level of awareness not unusual in the content of a seizure. It seems particularly clear from Monicas narratives that the seizure process and content was important to her and taught her a great deal. She was very clear about retaining consciousness throughout the spectrum of states, staying present to what was there, and bringing that back to inform her life and her work. In addition, both Bill and David reported short episodes that might be summarized as outside, looking in. For both of them, these experiences had an otherworldly or alien feel. The states they both experienced were unpleasant and in Davids case, terrifying. What would it take to be able to tolerate that profound a level of distress and be able to witness the process with no reactivity? What might there be that would be worth the long practice of dropping reactivity? The motivation for interest in identifying neuroanatomical correlates of

126 consciousness runs the gamut from enthusiasts with a more or less utopian view of how people might live to skeptics who would prefer to reduce all experience, including the delusion of God or a higher power, to some discrete set of synaptic interchanges. Accordingly, temporal lobe epilepsy is often either the holy grail of consciousness or the pathological evidence supporting the skeptics view. Either extremity of this spectrum is a potential weapon to diminish all or part of a persons experience of TLE or any other neurologically based disorder. A long-running non-fiction bestseller is a memoir, My Stroke of Insight (2006); Jill Bolte Taylors beautifully simple and clear story of the experience of her stroke at age 37 in 1996 and the journey she has undertaken since then. What is of note here is that Dr. Taylor happens to be a Harvard-trained neuroanatomist, and absolutely exudes joy in the magnificence of life where ultimately, everything we experience is a product of our cells and their circuitry (p. 172). Her stroke was severe; recovery took eight long years of hard work. But the morning of her stroke, I saw myself as a cellular masterpiece. In the absence of my left hemispheres negative judgment, I perceived myself as perfect, whole, and beautiful just the way I was (p. 71). Part of what she is teachingand her book is a teaching storyis that the spectrum of consciousness is available to all and how a person is in the world is a choice. Her book is relevant here because it is an exceptionally welldescribed real life take on the issue of neuroanatomy, consciousness, and temporal lobe engagement. She ends her story: Your body is the life force power of some fifty trillion molecular geniuses. You and you alone choose moment by moment who and how you want to be in the world. I encourage you to pay attention to what is going on in your brain. Own your power and show up for your life. Beam bright! (p. 177)

127 Perhaps her work and the work of others, including of individuals like Margaret and Monica, can further treatment of especially refractory chronic diseases, including epilepsy, hypertension, and depression, among others. In the context of transpersonal psychology and meaning-making, processes already devised for reducing emotional reactivity and steadying attention can likely be made more preciseindividualized and therefore more effectiveby tailoring the processes to an individuals meaning-making structure. Methodological Considerations and Qualifications The narrative method is intended to explore stories, stories are told to create meaning, and meaning helps give structure to peoples lives. Using a different hypothesis or question and a different method would almost certainly have resulted in a very different perspective on the creation of meaning, and may or may not have identified any concepts or structures of meaning. Narrative method shapes stories and creates a context and frame; the method clearly circumscribes this research and cautions against overgeneralizing the results. Narrative theory assumes that the relevant process (the how) and the content (the what) can be revealed in a persons story at a given moment in time. In addition to creating a particular cognitive structure, the question and approach assume that the experience of epilepsy can in and of itself not only be meaningful, but that its meaning can be discerned and highlighted in a particular life; that this meaning can be accessed through a cognitive process, a conceptualization; and that the snapshot of one interview in one particular context is sufficient to draw this forth, without subsequent consultation of participants in the phases of analysis and interpretation.

128 The narrative lens highlights certain elements and pushes others to the background. It looks for the subjective, it looks to context, and it assumes that in this process data relevant and primary to the topic will emerge. This is so across the broad range of narrative approaches, each of which produces a slightly different product. It is tempting to use narrative in such a way that the resultsthe lives glimpsedbecome static; that what is revealed is not just one frame of a movie from one place in the theaterthe next frame unknownbut rather the one best summary of the entire movie. This pitfall does a deep disservice to the method and most importantly to the lives and individuals who would speak in this study. The NPCS was not a completely effective instrument in analyzing these interview narratives. Rather than using the NPCS, this researcher suggests identifying meaning concepts in individual interview data, performing the secondary analysis that would potentially identify a meaning-making structure, and then looking across multiple interviews for any similarities or differences among the concepts and structures of meaning. The population sought for this study was narrowly defined to avoid as many confounds as possible. Considering that the criteria may have inadvertently also defined a particularly able story-telling population, this researcher would choose to place minimal restrictions on the population and greatly increase the number of participants in the hope that not only would the population still yield clear, durable meaning-making structures, but also would add more texture and richness to the findings of this study. An additional methodological consideration would be the possibility of having a follow-up interview or involving the participant in the analysis. All of these suggestions would add a great deal

129 of time and effort to a similar research undertaking; whatever might be reasonably considered would contribute to a potentially more widely useful data set. In this research study, there were limitations in addition to those imposed by the method and the question. The circumstances of each interview, including whether it was conducted face-to-face or over the phone and whether or not recognized as such by this researcher, may have had an adverse affect on subjects willingness and ability to disclose what is a very personal process around a personal issue that can render them other in this culture. In addition, this researcher has limited interviewing experience and therefore a limited skill level. This researcher is also an adult with epilepsy, and though this researchers bias is that this subjective experience facilitated listening deeply to the experiences of other individuals, it is possible that this researcher looked for experiences and processes similar to her own and neglected the voice of the narrator that emerged in the interview. My experience of epilepsy began at age four and has maintained a very benign course. However, I wasnt diagnosed for a number of decades. I have had a host of symptoms, including affective disturbances and alterations in consciousness; many of my experiences could be classified as mystical. Since diagnosis my seizure activity is essentially fully controlled by medication. The limitations of my experience of epilepsy are several, although their potential effects on the research results are unknowable. It is possible that my experience might have led to inappropriate judgments about each narrators life; I may have communicated disbelief unintentionally at someones not having experienced stigma or prejudice; participants may have assumed that I have had a broader range of epilepsy symptoms

130 than I have, and I may have not sensed that assumption; and I possibly assumed I know more than I do, even though my experience is quite limited and is known to me only as subject. Because this research aimed to select a heterogeneous group of adults with epilepsy, it is possible that this disrupted the full potential for identifying a process for conceptualizing meaning. This is an issue of validity, looking at the study as a whole. However, this study proposed simply to find out whether or not there is such a process and how it could be useful for providing insight that might lead to practical clinical interventions; from this point of view, a heterogeneous population made the most sense. Another issue that unfolded in the interview process is the circumscribing reality of the interview questions. This fact was necessary, but this researcher found herself wondering more about how the elements of participants lives that did emerge came together in a larger whole. A different set of interview questions used to explore the process of meaning-making in epilepsy may have raised different issues of identity and meaning than did the set employed. Transparency, communicability, and coherence were the criteria proposed for assessing the validity of this study. Transparency indicates the clarity of the steps taken in analysis, which were detailed in chapter 3 and amended in chapter 4, citing the steps taken which departed from the analytic process originally defined. Communicability refers to the ease of understanding the results; in this case it is how well the theoretical constructs are supported by the results. The narratives presented in this study are intended to be representative of the interview content and process. The analysis provided at the end of each interview and the theoretical possibilities explored in chapter 5 do logically

131 flow from one to the other. They are drawn initially from the actual content of the interview and then from an interpretation of that content and the positing of a context for each and all of the interpretations identified. Finally, coherence is defined as how the interpretations come together and make their own story. The interpretations fit easily into one theoretical context, drawing together a wealth of data into a possibility of identifying unique cognitive constructs of identity and meaning. Reliability is derived from both the usefulness of the results and whether or not the results can be extended. This researcher believes the results can be useful in the practical environment of therapeutic work, though this would be known only through clinical studies. The study is also extendable: it can be expanded and replicated in a more diverse sample, hopefully to eventually include children and persons of other cultures. This researchers best estimate is that this study meets the established criteria for validity and reliability. Recommendations for Future Research One question that this study puts forth is whether or not there are a limited number of structures of meaning and whether there would be significant duplication of patterns in any given population; the structures and concepts of meaning clearly provide the human community with needed perspectives and skill sets. Is there a limit to the perspectives and skill sets human community needs at any particular point in time? Does this shift generationally? Does it shift at all? Do meaning concepts shift across cultures or just the vocabulary that alludes to their presence? It would also be useful to explore more deeply the transformative process within any given cognitive structure of reality. Complementary research could include the non-cognitive modalities previously

132 mentioned: creative expression and body-based work. Given the rapid evolution of human community in this 21st century, the intensifying need for mutual understanding and cooperation, and the growing interest in human consciousness, furthering this research could reveal further positive findings and applications. Conclusion In listening to the six participants in this study, it was impossible to miss the heartfelt self-exploration, the gratitude at being alive, the joy found in increasing levels of self-acceptance, and the honesty and integrity employed in the telling of these stories. This is the consistent backdrop to the research process and has been a strong motivator for this researcher in the analysis and discussion phases of this research, working to be as true as possible to each of these narrators in his or her process and content. The findings of this research are exciting in that a more focused and efficient therapeutic process may be possibleperhaps there are clinicians who employ this instinctivelyand that, where higher-functioning patients are involved, facilitating the naming of their structures and identifiable mechanisms of change would potentially provide a manageable tool to allow these patients to continue this work on their own at the conclusion of therapy. In addition, this research has found that for persons with epilepsy the content of the experience of seizures is an important consideration in the therapeutic process, though not the most fundamental element. This finding is unique to persons with epilepsy; it is not simply the chronic nature of the disease or even its notable psychosocial sequelaethough these are also importantbut specifically the seizure content that needs to be brought to play in facilitating a clients process. Combining the therapeutic process with the possibility of an individually tailored map for dropping

133 emotional reactivity could possibly promote seizure reduction as well as increased selfcare and compliance with a medical or other health-promoting regime. Finally, in exploring the narrative method, how it follows from the research question, and this researchers best attempt to remain true to these narrators, the heart of the matter remains very simple. It is put very eloquently by Melvin Miller (1996) when he says, I have also begun to feel like a steward or caretaker of something very special. As a result, I am constantly asking myself, Can I do justice to the preciousness of that which is being placed before me? (p. 145).

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144 Appendix A: Statement of Advertising Content For Flier, On-line Posting, and Newspaper Ad

Do you or does someone you know have epilepsy?


You can participate in a small study exploring meaning in the experience of epilepsy!
Qualified participants: must be at least 25 years old The epilepsy must have begun at age 7 or older The epilepsy must have been diagnosed at least 5 years ago must find some meaning in having epilepsy do not have a developmental or other disability The epilepsy cannot be caused by a stroke or other neurological disorder

This study involves a telephone interview of 15 30 minutes and then a face-to-face interview of 60 90 minutes. These interviews will be held in the San Francisco Bay Area, at a location and date convenient for you. If interested, please contact Maureen Gatt (researcher) through e-mail (epilepsyresearch@sbcglobal.net) or by phone at (650) 401-6171. This researcher is a 4th year clinical psychology student at the Institute of Transpersonal Psychology for a doctoral dissertation.

145 Appendix B: Demographics Questionnaire (These questions will be part of the initial phone interview; see Screening Instruments and Selection Process, page 50.)
Date: Name: Current Address: Phone Number: E-mail Address: Date of Birth: Place of Birth: Ethnicity: Highest Level of Education Completed: Occupation/ Profession: Religious/Spiritual Practice/Faith (current): Religious/Spiritual Practice/Faith (past): Marital Status: Sexual Orientation: Age When Diagnosed with Epilepsy: Type of Epilepsy or seizures, if known: Are your seizures fully controlled? If you have breakthrough seizures, what kind of seizures, if known, do you have? How frequently do you have breakthrough seizures? Do you take your epilepsy medication as prescribed? Do you use any additional means to promote healing or health (e.g., chiropractic, herbal)?

146 Appendix C: Consent Form Research Participant Consent To the Participant in This Research: You are invited to participate in a study to investigate how adults with epilepsy understand their lives. It is hoped that participants will benefit from discussing their experience of living with epilepsy by having a deeper appreciation of their strengths, challenges, and understanding from experiencing a chronic disease. Results of this study may benefit healthcare professionals and others to better understand people living with epilepsy or other chronic diseases. You will be asked to participate in a telephone interview lasting about 15-30 minutes, and you may also be asked to participate in a confidential, one-on-one, face-to-face or telephone interview with the researcher. The interview would take between 1 and 2 hours at a mutually convenient place and time. The researcher will take some notes and will record the interview. If mutually agreeable, both the researcher and the participant can follow-up with clarifying questions or additional information. For the protection of your privacy, all information received from you will be kept confidential as to source and your identity will be protected. Recordings, notes, transcriptions (transcribed by researcher), and documents developed in the research process will be stored on an external hard drive or in a locked cabinet in researchers private residence. Your identity will be kept confidential through the use of code numbers. In the reporting of information in any published material, any information that might identify you will be altered to ensure your anonymity. This study is designed to minimize potential risks to you. If you seem to be experiencing distress or any other symptom such as anxiety, depression, etc. during or as a result of the interview process, the researcher will provide referrals to appropriate licensed professionals for help. If at any time you have any concerns or questions, the researcher will make every effort to discuss them with you and inform you of options for resolving your concerns. If you have any questions or concerns, you may call me at 650-401-6171, or call Jenny Wade, Ph.D., Dissertation Committee Chairperson, or Kartikeya Patel, Ph.D., Research Ethics Committee Chairperson, at 650-493-4430, the Institute of Transpersonal Psychology. If you decide to participate in this research, you may withdraw your consent and discontinue your participation at any time during the conduct of the study and for any reason without penalty or prejudice.

147 The results of the study and abridged and disguised quotes will be published in the researchers dissertation, and may be presented orally or in other written forms, such as an article in a professional journal. This researcher may also reserve the data and results of this study for future use in other written material, such as a book for the interested public. You may request a copy of the summary of the research findings by providing your mailing address with your signature. I attest that I have read and understood this form and had any questions about this research answered to my satisfaction. My participation in this research is entirely voluntary and no pressure has been applied to encourage participation. My signature indicates my willingness to be a participant in this research. ________________________________________________ Participants Name (please print) ________________________________________________ Participant's Signature ________________________________________________ Researcher's Signature ____________ Date ____________ Date

Mailing Address of Participant (if you would like a summary of research findings): ___________________________________ ___________________________________

Maureen Gatt 650-401-6171 PO BOX 1368 Millbrae, CA 94030-1368 epilepsyresearch@sbcglobal.net

148 Appendix D: Interview Protocol (Questions may be expanded through follow-up or probing questions) 1. Tell me about how you came to have epilepsy. 2. How would you describe yourself and your life before that? After that? 3. Tell me what it is like for you to have epilepsy. 4. Have you ever told anyone what your experience is of a seizure? 5. How does it affect you if other people know you have epilepsy? 6. What is the most positive aspect for you in having epilepsy? 7. What is the most challenging aspect for you with having epilepsy? 8. How has having epilepsy affected the way you understand life? Yourself? 9. Is there any meaning to your having epilepsy? 10. Is there anything else you would like to add regarding epilepsy for you in your life?