Embodying brainstorms: the experiential geographies of living with epilepsy

Abstract

This paper examines how living with epilepsy involves the complex interaction of knowledge of the unstable body, surrounding space and social relations. Through an engagement with written testimonies, it is argued that the spatial extent of everyday life varies with willingness to take socio-emotional and material risks in terms of when and where losses of bodily control (‘seizures’) might occur. I suggest that spaces and activities once taken-for-granted become potentially ‘unsafe’ and require renegotiation as trust in the limits of the body is disrupted. Findings confirm but also build upon previous work by geographers of chronic illness and impairment by engaging characterisations of the temporalities of fluctuating symptoms and of illness as manifesting either visibly or invisibly. Furthermore, it is argued that how people respond to the complete loss of bodily control differs in key ways to people coping with partially impaired control of the body. The paper concludes by asserting the potential for using written testimony as source data to highlight the voices of people whose spaces may otherwise remain silent.

Cet article examine les interactions complexes dans la vie d'une personne souffrant d'épilepsie entre le corps instable, l'espace ambiant, et les relations sociales. Je maintiens à partir des témoignages écrits que l'étendue spatiale de la vie de tous les jours varie selon la volonté de prendre des risques socio-émotionnels ainsi que matérielles en termes de quand et où la perte du control du corps risque de se produire. Je suggère aussi que les espaces et les activités considérés auparavant comme acquis perdre ainsi leur sécurité et ils requièrent alors des renégociations au fur et à mesure que la confiance investie dans les limites du corps est troublée. Les conclusions confirment en même temps qu'ils partent des recherches préalables menées par des géographes au sujet des maladies chroniques et de l'infirmité en étant en retenant des caractéristiques temporelles des symptômes fluctuant et la tendance de la maladie de se manifester soit visiblement, soit invisiblement. De plus on maintien qu'une différence importante existe entre les moyens de répondre à une perte de contrôle corporel complet et ceux de répondre à une perte de contrôle incomplet. On conclut en affirmant le potentiel de l'utilisation des témoignages écrits comme données de base pour souligner les voix des personnes dont les espaces qu'ils habitent risquent de rester silencieux.

Este articulo se examina la interacción compleja de conocimiento del cuerpo inestable, el espacio al alrededor y las relaciones sociales que están involucrados en una vida epiléptica. A través un involucramiento con testimonios escritos se discute que la extensión espacial de la vida cotidiana se varia con la buena voluntad tomar riesgos socio-emocionales y materiales en términos de donde y cuando la pierda de control corporal (ataque de apoplejía) puede ocurrir. Sugiero que espacios y actividades que antes no estaban valorados llegan a ser potencialmente ‘inseguro’ y requieren una renegociación mientras la confianza en los limites del cuerpo están desbaratados. Conclusiones confirman pero también amplían los trabajos anteriores por geógrafos de enfermedades crónicas por involucrar caracterizaciones de las temporalidades de síntomas fluctuantes y de enfermedades manifestando visiblemente o invisiblemente. Además se discute que las maneras de que personas responden a la perdida completa de control corporal están distintas en formas claves a personas manejando al perjudica parcial del control del cuerpo. El articulo se concluye por afirmar la potencial de utilizar testimonio escrito como un fuente de datos para destacar las voces de la gente cuales de otra manera habrían quedado callados.

Keywords:

• epilepsy
• testimony
• emotion
• risk
• body boundaries

Keywords:

• épilepsie
• témoignage
• émotion
• risque
• limites corporelles

Keywords:

• epilepsia
• testimonio
• emoción
• riesgo
• límites del cuerpo

Acknowledgements

I thank the authors whose testimonies informed this paper. I also extend my gratitude to Hester Parr and Chris Philo for their support and patience and to Michael Brown and three anonymous referees for their detailed comments.

Notes

 1. This paper is part of an ESRC-funded CASE Studentship in collaboration with Epilepsy Scotland. The use of testimonies is one of multiple methods—including questionnaires and interviews—aimed at exploring the lifeworlds of people with epilepsy.

 2. Seizures occur when brief disturbances in the brain's normal electrical activity cause nerve cells to fire off random signals, resulting in a temporary overload (Epilepsy Scotland 2010). Seizures are normatively linked with photosensitivity and tonic–clonic ‘fits’ (formally known as ‘grand mal’; when a person stiffens, loses consciousness and falls to the ground convulsing; Kobau and Price 2003); however, there are many different kinds of seizures, some of which end in seconds with minimal physical disruption, while others are more dramatic and last several minutes (Epilepsy Scotland 2010).

 3. These concerns are tied up with longer-run narratives of onset, (search for) diagnosis, the ‘sedimentation’ of adaptive routines (until possibly the adaptations cease even to be noticed), biochemical changes in the condition itself, co-morbidities, etc.—in short, there are much broader geographies of epilepsy that require attention (and which I will explicitly engage during my own empirical research).

 4. Igoe, in his early sixties at the time of writing (having been diagnosed at 14), discusses how epilepsy, though something he accepts as part of his life, is rarely understood by others, resulting in a burden that overshadows any physical effects. Dennison, writing in her fifties (having been diagnosed at four), reflects on coping adjustments made, and which she continues to make.

 5. I include biographical details with quotations when provided in the texts. For example, ‘anonymous, in Schachter (2008: 99)’ indicates that no details were included with the quote; while for ‘female, 39, in Schachter, Krishnamurthy and Cantrell (2008: 35)’, the only details included were that it was provided by a female aged 39.

 6. The issue of ‘silences’ extends inescapably to those uncomfortable with the written form or who find it difficult to write or type due to physical or cognitive impairments (epilepsy is more common in people with learning disabilities, Epilepsy Scotland 2010).

 7. Seizures are categorised through two main groups: ‘partial seizures’, which affect one part of the brain, at which point people may or not lose awareness, but will not lose consciousness. ‘Generalised seizures’ affect the whole brain and always involve the loss of consciousness. A partial seizure can lead on to a generalised seizure if the disruption spreads. Most will have only one type of seizure, but can have more (Epilepsy Scotland 2010).

 8. Auras are actually a type of partial seizure and can be experienced in isolation, but often act as embodied warnings preceding other seizures. They typically manifest as a feeling in the stomach or taste in the mouth, and can be as brief as a single second, but may allow enough time for a person to alert others and/or go to a safe place (Epilepsy Scotland 2010).

 9. Dennison's autobiographical work is henceforth referenced at length due to its astonishing level of detail.

10. The gender-specific prevalence of epilepsy is roughly equal (Joint Epilepsy Council 2011); though there are gendered dimensions implicated in its management (see Crawford and Lee 1999).

11. Geographers have written at length about peoples' increased presence in—and ambiguous experiences of—the home after the onset of illness. The concept of ‘home’ includes local neighbourhoods and public facilities, all of which help to structure changing experiences of place (Dyck 1995). These relations shift over time, perhaps in accordance with symptom severity. The home may come to represent a space of ‘safety’, but for others a space of entrapment: a prison or asylum (Davidson 2000b). For people with agoraphobia, venturing beyond the boundary of the home is negotiated only when absolutely necessary, and at times when the local streets are likely to be relatively empty of people (Davidson 2000b, 2001). To protect their psychosocial as well as physical boundaries, AS individuals tend to stay in the home-place in an attempt to impose order on their experiences (Davidson 2007), thus self-limiting their social geographies as a coping strategy.

12. Le mot anglais ‘brainstorming’ n'est pas utilisé dans son sens habituel d'un coup d'inspiration; l'auteur entend par « brainstorms » un sens plus littéral qui correspond à la condition médicale dont l'article s'agit.