Published epilepsy narratives: Sample metaphors

current study did begin with an overview of epilepsy autobiographies, memoirs, and biographies, so as to gain a broader understanding of the cultural background of typical epilepsy narratives and terminology in published format. Some brief examples from the reviewed sources will help to illustrate the prevalence of metaphor use in published, modern-day epilepsy narratives.

Personal accounts of epilepsy include metaphorical references to socio-historical beliefs, similar to those outlined by Temkin (1994). These include reflections of demonic possession, including individuals who feel “evil forces” or have “Satan in my soul” (David B., 2005; Kissing, 2003).

Others reflect possession experiences in terms that do not identify demons but may be impacted by current events and modern discourse such as Connoly’s (2005) “invasion” of the self, and Healey (2009) who described how her mind was “taken over by a terrorist” after she started having seizures. Other narratives refer to concepts of uncontrolled rage, as discussed by Temkin, including experiences of “rage like a warrior” and “fits of rage” (David B., 2005; Fiennes, 2008;

Schachter, 2003). Biomedical concepts of epilepsy are also replete with imagery. For example, physicians and patients speak of “neurons misfiring,” “electrical disturbances,” and seizures, rather than of patients who are “resistant to treatment” (Blume, 2001; Kinsman, 2007; Wiebe et al., 2009). In many of the published narratives reviewed, metaphor use by people with epilepsy is consistent with medical terminology and medical course of treatment though these may not be the dead metaphors we might expect. For example, references to electricity and seizures are prevalent

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in both medical and societal discourse, perhaps leading to misunderstandings such as the “fear that I might electrocute her [after a seizure]” (Robinson, 2006). Certain individuals equate being medicated for their seizures with “living in a fog” and being “zombie-like” (Connoly, 2005;

David B., 2005). Still others provide metaphors that are less commonly used in epilepsy narratives or epilepsy research, reinforcing the diversity of experiences and conceptualizations that can be held. Examples include: “living a perforated existence,” feeling like a “marionette,”

and living “across the moat” from others (Anonymous in Schachter & Andermann, 2008;

Kissing, 2003; Slater, 2000). These diverse choices of metaphor emphasize the different

conceptualizations of epilepsy held by narrators, and serve as an indicator of the unique identities and narratives that are expressed. As noted, the vast majority of these personal accounts were written by individuals who have undergone surgery to control their seizures. As with many people living with chronic illness, many reference their life with epilepsy using the “journey”

metaphor (Frank, 1995, 2013; Lakoff & Johnson, 1980). Some identified journeys of positive change, such as “my quest to find out the truth,” “creeping towards hopefulness,” and being “able to change lanes” (Connoly, 2005; Healey, 2009; Kinsman, 2007). Those whose seizures have been controlled by surgery or successful medication provided descriptions of “freedom from my little cave,” “blossoming into a new me,” or even individuals describing themselves as “under control” (Kinsman, 2006; McCallum, 2008).

Metaphors are not only central to making meaning of the illness identity, but they also reflect diverse experiences and understandings. That is, people with epilepsy appear to not only use a range of metaphors, but even the same metaphor can carry very different meanings

depending on the person. A metaphor that one individual finds therapeutic in helping her or him to make meaning of an experience, another individual might find inaccurate, unhelpful or

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upsetting. Alternatively, the tenor of one event might be clarified by metaphor; for example, one individual identified her medical treatment as a negative “barrier to normalcy” (Schachter, 2003) while another described it positively, “like winning the lottery” (Eicholz, 2009). By considering the diverse use of seizure and epilepsy metaphors in published narratives, after having grounded myself in some of the epilepsy narrative research, I was able to gain a further understanding of the different ways in which those with epilepsy may communicate their illness experience. I found a contrast between the published narratives, many of which were rife with metaphor, as compared to the excerpts from anonymous narratives that I encountered in the research. While some of the published narratives were written by professional authors, others were self-published by individuals with varied epilepsy-related and professional backgrounds. While all published narratives would have been reviewed and edited professionally, the variability in authorship and publication led me to the conclusion that metaphor was likely to present to different degrees in all published or unpublished epilepsy narratives, albeit to varied extents depending on the contextual factors at play. Having considered the literature and publications that was reviewed, let us now turn to the research design and methodology that drove my study.

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CHAPTER THREE Research Design

In the next section I outline my objectives and the methods used. I will discuss my choice to select a qualitative approach in studying epilepsy metaphors, a choice grounded in the

previously discussed research on epilepsy narratives, conceptualizations of self and illness. In addressing my goals for the project, I outline the narrative analysis paradigms with which I undertook this project, beginning with the ontological and epistemological assumptions which most closely align with my approach. Finally, the bulk of this chapter involves an outline of the methods used for participant recruitment, collection of narratives, and data analysis.