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Embodying brainstorms: the experientialgeographies of living with epilepsyNiall Smith aa School of Geographical and Earth Sciences, University of Glasgow,Glasgow, G12 8QQ, UK E-mail:

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To cite this article: Niall Smith (2012): Embodying brainstorms: the experiential geographies of living withepilepsy, Social & Cultural Geography, DOI:10.1080/14649365.2012.683806

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Embodying brainstorms: the experiential geographiesof living with epilepsy

Niall SmithSchool of Geographical and Earth Sciences, University of Glasgow, Glasgow G12 8QQ, UK,

n.smith.1@research.gla.ac.uk

This paper examines how living with epilepsy involves the complex interaction ofknowledge of the unstable body, surrounding space and social relations. Through anengagement with written testimonies, it is argued that the spatial extent of everyday lifevaries with willingness to take socio-emotional and material risks in terms of when andwhere losses of bodily control (‘seizures’) might occur. I suggest that spaces and activitiesonce taken-for-granted become potentially ‘unsafe’ and require renegotiation as trust inthe limits of the body is disrupted. Findings confirm but also build upon previous work bygeographers of chronic illness and impairment by engaging characterisations of thetemporalities of fluctuating symptoms and of illness as manifesting either visibly orinvisibly. Furthermore, it is argued that how people respond to the complete loss of bodilycontrol 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 datato highlight the voices of people whose spaces may otherwise remain silent.

Key words: epilepsy, testimony, emotion, risk, body boundaries.

Introduction

I would say that there are three basic challenges

that epilepsy has presented in my life:

. the unpredictability and effects of my

seizures

. the search for control and management of

my condition

. the legacy of myth and misunderstanding

surrounding my epilepsy (Heather, 40, in

Chappell and Crawford 1999: 7).

Research by geographers into the lives of

people living with chronic illness and impair-

ment highlights the disruptions caused by

changing mind/body states. In such work,

examining feelings of disconnection between

the self and body facilitates increasingly

nuanced explanations of the spatialities of

everyday life. I wish to engage this body of

literature by investigating the ways epilepsy

unsettles the mundane phenomenology of

subjective experience. My analysis focuses on

the embodied practices that living with

Social & Cultural Geography, iFirst article, 2012

ISSN 1464-9365 print/ISSN 1470-1197 online/12/000001-21 q 2012 Taylor & Francis

http://dx.doi.org/10.1080/14649365.2012.683806

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epilepsy requires to provide an account of how

individuals’ social geographies and identities

are (re)structured around the radical losses of

bodily control ‘seizures’ engender. In so doing

I explore avenues for interpreting disturbances

in perceptions of ‘normal’ time–space brought

on by entering non-cognitive states of (human)

being, which have wider implications for

geographies of the self, the (dis)abled body

and care and caring. In particular, I argue that

no space or activity can ever be considered

completely ‘safe’ when feelings of trust in the

body’s boundaries are compromised.

In forming these claims there is an exclusive

focus on written testimonies.1 Personal stories

of epilepsy experiences detail what it is like to

live with a condition defined by a tendency to

have recurrent seizures,2 during which indi-

viduals typically lose awareness of what is

happening or where they are, and may fall out

of consciousness altogether. Despite being a

relatively seldom-used research resource, it is

contended that testimonies offer an important

and complementary means to understanding

the politics of bodily, emotional and material

difference (Robinson 1990: 1173). My

account is organised around the immediacy

of the seizure (before, during and after), when

epilepsy becomes ‘visible’, albeit temporally

and sporadically; but wider temporal and

spatial concerns are also addressed to reveal

the insidious, although ‘hidden’, impacts of

epilepsy beyond those momentary losses of

bodily control3 (Fisher and Schachter 2000).

The (relative) unpredictability of seizures—

and, therefore, of the body—can be an

emotionally disturbing aspect of the condition

(Jacoby 1992), as the opening quote attests;

and I wish to provide a geographical narrative

on the search for and adaptations to the

triggers and temporal patterns of seizures, an

ongoing process always related to perceptions

of stigma and risk. Throughout, the complex

experiential geographies of epilepsy that frame

individuals’ identity renegotiations are

explored through the embodied, emotional

and concrete relationality of chronicity.

Findings from existing scholarship are sub-

stantiated, but I seek also to broaden distinc-

tions relating to corporeal impairment, the

uncertain course of illness and its everyday

material and discursive impacts so to continue

conversations on the recursive links between

health and place and the ‘deviant’ body. I

begin by situating this study within the

relevant literature and continue on to discuss

the value of engaging testimonies as a way of

accessing the everyday lives of people with

epilepsy. The analytic section opens with a

discussion of the specific time–space disrup-

tions caused by seizures and their affect on

bodily and social space, before considering the

ongoing negotiation of physical and social

boundaries. Finally, my concern is with how

particular spaces are experienced and used and

how everyday routines require self-knowledge

of the associated risks of epilepsy.

Chronic illness and epilepsy

Adapting to chronic illness is a disruptive,

uneven process that occurs over space and

time. In fact, many people are forced to adapt

‘time and again’ (Charmaz 1995: 658) as they

encounter new setbacks in health status.

Geographers have argued that research on

illness and impairment must recognise, but go

beyond, the ‘social model’ of disability (for

critiques of the ‘social model’ see Hughes and

Paterson 1997; Shakespeare and Watson

2002) by taking account of the body, which

is simultaneously social and physical (Hall

2000; Moss and Dyck 1999; Parr 2002).

Bodily sensations of illness or impairment are

complicated by social pressures to appear

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‘normal’ (Hansen and Philo 2007), but the

body sometimes escapes ‘from the discipline

that the social order seeks to apply to it’ (Smith

and Davidson 2006: 63), thus inciting the

emotio-spatial othering of that which is visibly

‘out of place’ (Sibley 1995): the deviant body

(Moss 1997). Whether this stigmatisation is

‘enacted’ or ‘felt’ (Jacoby 1994), how people

feel (Davidson and Milligan 2004: 524) across

various places shapes the nature of their

experiences and spatial behaviour. Thus, both

temporally fluctuating symptoms and the

negative reactions of friends, colleagues and

others lead to the narrowing of social circles

and reduction of activities (Moss 1997; Wilton

1996). People become reluctant to reveal their

illness in community, work or domestic

spheres, keeping it ‘hidden’ as self-protection

from the judgemental gaze of the other

(Davidson and Henderson 2010). In critical

health geography, sensitivity to difference is

helping to unpack how material relations and

practices are renegotiated after the onset of

chronic illness with the goal of unsettling

discursive constructions of what it is to be

‘disabled’. Indeed, bodies are not simply sites

of oppression: they are the personal and/or

collective vehicle for resistance to widespread

assumptions about what a person living with

chronic illness can achieve, when and where

(Moss and Dyck 1999). Nonetheless, individ-

uals’ roles and identities shift as implicit trust

in the body is replaced by heightened

awareness of its limits, or borders (Davidson

2000b, 2001). These boundaries often fluctu-

ate, requiring that subjective physical

capacities are monitored in line with the

spatial (re)construction of everyday life (Moss

and Dyck 2002: chapter 7).

Geographers have long argued for analyses

to be grounded in the often mundane routines

and spaces of day-to-day living so as to

illustrate those lived disruptions caused by

such conditions as M.S. and HIV/AIDS (Dyck

1995; Wilton 1996). Adjustments following

illness onset reflect not only the ways it enters

into individuals’ embodied and emotional

time–space fabric but also the coping strat-

egies enacted, which are embedded in particu-

lar places and across various sets of social

relations such as gender, ethnicity, class and

life stage (Moss 1997). Illness and impairment

may constrain the spatial extent of everyday

life (certain places may become ‘out of

bounds’, while others, such as the home, take

on greater significance), in which particular

spaces are used differently (e.g. to accommo-

date illness or disability) and perceived in new

ways (places may become marked as safe or

unsafe). Crooks (2010), for instance, examines

the ‘unpredictably routine’ and ‘routinely

unpredictable’ activities of women inside the

home after the onset of fibromyalgia.

Although participants felt their unpredictable

bodies to breed an unpredictable home life,

Crooks shows that difficulties in coping and

identifying with the altered body actually

obscures how renegotiated activities do to an

extent structure life with chronic illness.

Changes in the body/mind are coupled with

altered perceptions of surrounding space, and

so the home becomes a place of (ambiguous)

safety (Crooks 2010; Davidson 2000b), where

impairment may be hidden from view and

social identity preserved (Charmaz 1995:

667). Activities outside the home however

require complex negotiations as to how one

participates. Selective strategies of conceal-

ment or disclosure may be managed in order to

control who, when and why others are

informed of ‘hidden’ health conditions (David-

son and Henderson 2010).

Whereas geographers of chronic illness and

impairment have been attentive to the differ-

ences between ‘visible’ and ‘invisible’ con-

ditions, in addition to the temporalities of

Embodying brainstorms: the experiential geographies of living with epilepsy 3

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fluctuating symptoms, relatively little has been

discussed in relation to a condition for which

symptoms may be invisible and at other times

distinctly visible, namely epilepsy. Indeed, it is

my contention that how people respond to the

complete loss of bodily control differs in key

ways to people coping with the loss of

complete control of the body. The ‘event’ of

an epileptic seizure is strikingly different from

many other visually recognisable forms of

disablement, but useful links can be found in

Davidson’s work on agoraphobia (2000a,

2000b, 2001) and Parr’s ‘delusional geogra-

phies’ (1999). Although these studies are

founded on mental health issues and cannot

be equated straightforwardly with epilepsy (a

neurological disorder), similarities are found

in how such conditions manifest temporally

and episodically, and in the ways individuals

adapt to anxieties over a ‘loss of control’,

especially in public space. Parr (1999) asserts

that delusional experiences radically disrupt

psychic and bodily boundaries to the extent

that the self dissolves, while for people with

agoraphobia Davidson (2000b) discusses how

the fear of re-occurrence of panic attacks leads

to heightened sensitivity to bodily sensations.

Destabilised boundaries prompt what Segrott

and Doel (2004: 605), in their study of people

with obsessive-compulsive disorder (OCD),

describe as ‘creative practices and complex

interactions with people and objects’. It is here

that geographical research may helpfully

interact with existing studies of life with

epilepsy. Reis (2001), for example, outlines

that how people feel about epilepsy is

constructed in part by changing relationships

with the social and material. Struggles to

maintain the self are disrupted by the

‘placelessness’ instilled by seizures; yet, it is

argued, if people ‘only knew the circumstances

under which seizures are bound to occur, then

they could control some of the causal factors

involved’ (Reis 2001: 373). As chronicity is

constructed in part by altered relations with

others (Estroff 1993), people seek to maintain

an ‘able’ identity by evading having a seizure

in others’ presence (Kılınc and Campbell

2009). This involves strategies such as pre-

planning escape routes for when a seizure may

be imminent. Rhodes et al. (2008b: 10) found

that fear of embarrassing others and/or

encountering stigmatising attitudes places

restrictions on individuals’ day-to-day activi-

ties. With regard to the unpredictability of

seizures, they state (2008b: 11): ‘People were

disabled by their fears as much as, if not more

than, by any actual physical or social cause

and these fears were grounded in a complex

mix of physical, environmental and socio-

cultural factors that could not be easily

disentangled.’ In this paper, I look to build

upon this contention through an encounter

with written testimonies. In the following

section, I discuss how the tradition of ‘giving

voice’ to people with chronic illness may be

extended through this method.

Researching testimony

The personal testimonies analysed in this

paper are from the ‘Brainstorms Series’ (edited

by neurologist Steven C. Schachter), a six-

volume collection (each with over 100

personal accounts) and autobiographies by

Julie Dennison (2004) and Michael Igoe

(2008).4 I supplemented this ‘data’ with

materials from several books, in which

testimonies form a small part of the text, and

blogs online, considered appropriate due to

the explicitly public intentions of the authors.

Testimonies were first used as a window

through which to gain insights about the

experience and contested meanings of epilepsy

in preparation for my own empirical research.

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I was struck at once by the extent to which the

lack of available, practical information about

life with epilepsy was bemoaned; while noting

how much these books meant to people: ‘As a

woman with epilepsy I will keep it with me for

the support I need when next I encounter “the

world that doesn’t understand me”’; ‘I read

Epilepsy in Our Lives and just wish books like

this had been published when I was a kid

growing up with epilepsy’; ‘You cannot

imagine how much Epilepsy in Our Words

has helped me to accept epilepsy as something

I’m just going to have to live with’ (anon-

ymous reader quotes preceding Schachter

2008).

Named as a double-entendre referring to an

innovative idea and a paroxysmal brain event,

‘Brainstorms’ contains testimonies from

patients (and others) to comfort, inform and

challenge those for whom clinical definitions

of seizures have little relevance compared to

information passed on by ‘similarly ‘different’

others’ (Davidson 2010: 306). Such narratives

do not bear witness to misfiring neurons in the

brain; rather they describe seizures in terms of

their consequences: perhaps injuries sustained

or social embarrassment (or what must be

done to avoid these). Similarly, they expose the

numerous meanings attached to the embodied

dislocations caused by epilepsy, not least the

interruption of losing one’s place (and time)

when writing a personal account: ‘During the

time it took to write this paragraph I have had

five absence seizures. Because of that, I have

had to read this paragraph at least six times to

check that it makes sense’ (Dennison 2004: 2).

Indeed, epilepsy can present ‘more of a social

than a medical difficulty’ (Igoe 2008: 4) and so

can be isolating for people not equipped with

coping mechanisms and support (Jacoby

1992). Seizures, as Aicardi (1999) puts it, are

only the visible part of the iceberg. As

mentioned above, it is widely regarded that

there are few potentially ‘therapeutic geogra-

phies’ (Parr and Davidson 2008) open to those

looking to learn about the condition and

connect with others. Rhodes et al. (2008b: 15)

suggest that individuals are failing to make

contact with people in similar situations or

ally themselves with organisations articulating

a positive image of difference due to stigma.

This may go some way to explaining why

publications like the ‘Brainstorms Series’

provide such vital spaces of information-

sharing (evidenced by the quotes above),

where people with epilepsy have a voice,

individually and collectively. Here, I analyse

what information is being passed on so as to

help us ‘understand what life is like on the

“inside”’ (Dennison 2004: preface).

Highlighting the ‘voices’ of people with

epilepsy moreover helps create a significant

counterpoint to the growing international

body of work by epidemiologists, which

tends to operate on a collective, population

level with little sense of the richness of

personal, local experiences (Andermann

2000). While these are important lines of

inquiry, a general lack of first-person descrip-

tion disembodies people by reducing the

already stigmatised body to a container of

symptoms, hence the deviant body is con-

structed. Individuals are distanced from how

the condition is explained and a multitude of

emotionally complex challenges are over-

looked. The ‘Brainstorms Series’ and the

personal stories of Igoe and Dennison there-

fore emphatically re-embody people with

epilepsy by offering unique—and clinically

marginalised (Bury 2001)—insights into the

entangled terrains of the neurological, per-

sonal, familial, cultural and political. Of

course, utilising testimony in geography is

not new. Davidson (2007, 2008, 2010),

Davidson and Smith (2009) and Davidson

and Henderson (2010), for example, have

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studied the accounts of Autistic Spectrum

individuals to confront those lived moments

beyond biomedical discourse. Whereas for

Davidson studying autobiographies was

appropriate precisely because autistic spec-

trum individuals often prefer to interact via

the written word, here it is largely due to the

meaning people attach to these texts in the

absence of other mediums through which

experiences of epilepsy are communicated.

Using testimonies as source material requires

we be aware of how they were approached by

the authors. With ‘Brainstorms’, Schachter

specifically asked people to detail their

experiences before, during and after episodes,

as well as perceived longer-term implications.

Story length was dictated by the authors,

varying from one paragraph to several pages,

who had time to develop and edit their words

before submitting stories they felt comfortable

in sharing. Editing involved simply removing

any dates and taking out the names of doctors,

hospitals and drugs. Schachter sought to

include those who professed concern about

their formal written skills by approaching

testimonies non-judgementally, leaving in

grammar ‘mistakes’ so as not to impede

potential connections from forming between

reader and author (Schachter, personal com-

munication 2011). The autobiographies of

Igoe and Dennison conform to a lesser extent

with the preconceived agenda of describing

seizure experiences and consequences, yet all

the narratives reproduced here vary greatly in

subject and depth. A potential limitation is that

testimonies allow little space for empathetic

interaction or the development of interesting

lines of thought (Davidson 2007: 662). Then

again, writing may allow people to express

feelings that would be difficult to articulate in

interviews with researchers/strangers,

especially where participation is anonymous.

Yet therein lies another limitation: in the

‘Brainstorms Series’ individual narratives are

accompanied with little or no biographical

detail5 and so it is beyond the scope of this

paper to fully account for the ways personal

experiences intersect with contextual factors

such as ethnicity, class and location (although

gendered and age-related experiences are

touched upon). Consequently, the following

analysis can in no way be considered repre-

sentative of all people with epilepsy, but

intends to be illustrative of a broad range of

experiences felt important by particular

authors in particular places (Hyden 1997),

which are ‘both personal—embodied in a

specific individual, and social—in that they

take their narrative from the context within

which they are embedded’ (Frank 1995;

Milligan 2005: 213). In this respect, testimo-

nies of living with epilepsy may usefully be

considered as complimentary to further

empirical research.

Besides limited scope for exploring personal

contexts, the practice of storytelling must be

problematised. Stories are always a matter of

selection, (re)interpretation and discursive

construction (Crossley 2000; Kameny and

Bearison 1999) and so the ways testimonies

are ‘performed’ at particular places and times

(Robinson 1990) have ambiguous impli-

cations. This issue is here magnified as authors

are rarely ‘present’ during the moments of

seizure—a truly non-representational, non-

cognitive state of (human) being—instead

generally re-presenting them following the

second-hand accounts of witnesses. Conse-

quently, both the author and researcher are

subject to—and agents of—‘silences’ (Char-

maz 2002).6 The researcher must choose what

to include in building a narrative, while leaving

other materials absent (though I do say

below— incompletely—how the themes in

this paper were distilled). Likewise, authors

may leave out information for particular

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reasons (fear, embarrassment and not consider-

ing it important) or simply not know the details

of seizure events. What has been left out, and

why, is ultimately unknowable, yet this should

not paralyse us. As Frank (1998) discusses, a

person tells a story not as a transparently

knowable self, but in and through relations of

power that may suppress or enable particular

versions of the self. What is (un)consciously

omitted or included is subject to interpretation,

which always involves translation and mean-

ing-making; where gaps are ‘precariously

bridged’ (Rose 1997: 315) and new identities

formed and re-formed in and between reader

and writer, much like the relationship between

interviewer and interviewee. Parallels can also

be observed in Davidson and Parr’s (2010)

work on Internet writing, where distinct

experiences gave rise to distinct expressions

of illness identities. As in such studies online,

accepting narratives as partial and selective

does not lessen their potential as data for

examining the lives of individuals who may

struggle to be heard under different conditions.

Literatures on disability, mental health and

chronic illness provided a vantage point from

which to engage the experiential geographies

of epilepsy. Above all, this paper is written

through the lens of embodied geographies and

intersubjective emotional geographies (David-

son and Milligan 2004). Materials were first

read to allow the main themes and meanings

to emerge from across the discursive terrain,

but also to think through the objectives for my

own empirical research. Undeniably, my

professional background and concerns meant

that these two purposes were always

entangled. Thus, the detailed annotation of

all materials, coding and analysis that fol-

lowed reflected my geographical interests. In

particular, I aimed to examine the embodied

changes affecting people before, during and

after seizures, as well as on a more ongoing

basis, perhaps associated with medication; the

relative unpredictability of episodes, maybe

leaving individuals striving to render them

more predictable and hence manageable, not

least in terms of when and where they occur;

the reactions, maybe overtly hostile and

stigmatising or possibly more ambivalently

accepting, of family, friends, colleagues and

strangers; and how time–space routines are

adjusted as individuals endeavour to cope with

living with epilepsy. In the rest of this paper, I

seek to use as much as possible authors’ own

words to discuss the themes that arose within

my analytical framework. The following

sections focus on the socio-emotional time–

space disruptions caused by seizures, how

people struggle to regulate their bodily

boundaries and the relationality and risks

involved in everyday practices. These issues

are interrelated in often complex ways that

serve to unsettle wide-held misconceptions

about epilepsy.

Neither here nor there?: the (a)social body

What happens during a seizure depends on

where there is a disruption in the brain’s

electrical activity and how quickly it spreads.7

How often seizures occur and the length of

time they last reflect a complex interaction

between the brain’s neural geographies, rela-

tive control by anti-epileptic drugs (AEDs) and

bodily or environmental factors that can

trigger their onset, such as flashing lights,

lack of sleep or too much alcohol (Dionisio

and Tatum 2010). These determinants may

render seizures predictable to a certain extent,

but the epilepsies have a multifarious nature

and can strike at any time (Schulze-Bonhage

and Kuhn 2008). No matter the manifes-

tations or physical repercussions, seizures

represent ‘a terrible interruption that I don’t

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have control over’ (anonymous, in Schachter

2008: 101). The onset of a seizure may be

paralysing and spur feelings of such intensity

that they have a depersonalising effect (as with

panic attacks experienced by people with

agoraphobia in Davidson 2001: 218). For the

following individual, the very boundaries of

the self seem to dissolve, with ‘a strange,

bizarre feeling in my head, as if I am out of

control. [ . . . ] I become very anxious and

afraid that I might die’ (Age 46, in Schachter

and Andermann 2003: 70). On the other hand,

episodes such as simple partial or absence

seizures, embodied typically by ‘staring into

space’ or ‘zoning out’, often go unnoticed by

others and even by the individuals themselves.

These seizures last anywhere between 1s and

2 min, and according to the following person,

absences are ‘like when you put the VCR on

pause’ (anonymous, in Schachter, Montouris

and Pellock 1996: 74). Such temporal disrup-

tions are reflected across the spectrum of

experiences:

Shaking my head to come back to reality was like

waking myself up from the dream. The only

problem was that when the ‘dream’ ended, I felt

lost, as if time had gone by and I was stuck

somewhere back a few minutes. (Female, 39, in

Schachter, Krishnamurthy and Cantrell 2008: 35)

This woman’s absences make ‘time stay still’,

necessitating that she ‘catch up’ with other

people once awareness is regained. Feelings of

timelessness and placelessness associated with

seizures—‘as though I am living in limbo’

(anonymous, in Schachter 2008: 100)—are

common, though at other times or for other

people seizures may induce an abstract, ‘other’

reality: ‘one side of my mind was racing from

scene to scene while the other was whirling

and gnashing in dark chaotic colours moving

in total clear blackness making weird shapes

and movements’ (anonymous, in Schachter

2008: 16). Inhabiting this psychic space

between consciousness and unconsciousness

resembles Parr’s ‘delusional geographies’,

which are experienced within the ‘inner self’,

but are also ‘physically located in material

spaces and comprise particular sorts of

relationships with existing objects, people,

and institutions’ (Parr 1999: 676). During

seizures the self is radically removed from

social consciousness such that the individual

perceives time–space completely differently to

others, or not at all. Here, I deviate from

Rhodes et al.’s contention (2008a: 392) that

‘physical experience is always mediated by the

social’, because they do not account for

momentarily mind/body cessations of the

social order, when someone ceases to be a

‘social being’. Seizures disrupt intersubjective

experiences of social space in that the body is

present, and yet the self is somehow absent,

‘seized’ from awareness (or may even be

experiencing another level of consciousness);

time continues as normal, but for the person in

seizure it is completely halted, or, at least,

totally warped. Furthermore, if someone

moves or is moved during an episode they

will have the sensation of being in one place,

and then suddenly in another. One person

describes absences as ‘what I call the

“moment-to-moment” or the “split-second.”

You’re sitting in the kitchen reading the

newspaper, the next blink of the eyelash, you

are outside on the street’ (anonymous, in

Schachter 2008: 35, original emphasis). These

examples illustrate how seizures are experi-

enced heterogeneously in respect of time,

material space and affect.

Regardless of how seizures manifest, disturb-

ances in perceptions of the time–space con-

tinuum create uncertainty socially and

emotionally as people attempt to reconcile

their corporeal self and surroundings following

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an ‘absence’. As epilepsy is an ‘invisible’

condition for large periods of time, but suddenly

made visible by seizures (during which time the

individual is unaware or unconscious), the

accounts of witnesses may be the only way to

fill in the ‘blanks’. Individuals are often

surprised to learn about how their seizures are

embodied: ‘During, there is uncontrolled move-

ment (I’ve been told), uncooperative when with

other people trying to help, and loss of all ability

to know where I am, what I’m doing, etc.’

(anonymous, in Schachter 2008: 43). After-

wards, articulating the seizureasa lived moment

is a task filled with uncertainty: ‘It was hard

trying to explain my problem because I didn’t

feel I could explain what I was experiencing so

the doctor would understand. I thought he

would think I was going out of my mind’

(anonymous, in Schachter 2008: 22). Even if

nothing is perceived for the entirety of a seizure,

anxiety is engendered through that not-know-

ing; the apprehension of one’s agency being

hijacked while continuing to occupy social

space: ‘it’s the pre- and post-seizure time thathas

been the most awful for me. In the midst of the

episode, I’m totally out of it’ (anonymous, in

Schachter 2008: 55). For this individual the

temporal period of a seizure is not ‘socially

mediated’, but events leading up to and

following seizures most certainly are.

The consequences of epilepsy are revealed in

part through the reactions of those who

witness an episode (Rhodes et al. 2008a:

392). If ‘the next thing that I remember . . . is

being on the floor’ (anonymous, in Schachter

2008: 8) with people ‘looking down at me’

(anonymous, in Schachter 2008: 46), regain-

ing the faculties can be exceptionally disor-

ientating, and ‘frightened onlookers make it

drastically worse’ (anonymous, in Schachter

and Andermann 2003: 135). In public, the

seized body has an affective quality that

renders it dramatically ‘out of place’, trans-

gressive of expectations in social space built by

and for the ‘able-bodied’ (Kitchin 1998).

When regaining awareness following a sei-

zure, then, individuals’ sense of time and

place—and therefore actions—is constituted

by ‘the feeling that space is populated with the

complex and often contradictory emotional

projections of others’ (Davidson and Milligan

2004: 524). The following quotes show people

using their body as a tool to allay peoples’

concerns and deflect losing an ‘able’ identity:

What I feared most was that the impact of watching

me have a seizure would be too much to bear for

friends, family and strangers. I always tried to

jump up after a seizure in the hope of making others

believe that I was OK and not different. (Female, 44,

in Schachter, Krishnamurthy and Cantrell 2008: 80)

I’ve often, even when still semi-dazed myself had to

calm down observers, who were more troubled than

I was. There was even one occasion when I helped

carry the stretcher of someone, a first aid officer,

who felt unwell after seeing me experience an

attack. (Igoe 2008: 140)

While these individuals attempt to perform the

‘healthy body’ to counteract the ‘judgemental

gaze’, others dissociate with being ‘seized’

because they are not able to perceive it

directly: ‘And there’s a puzzle . . . because I

don’t ‘go through it’, I don’t even remember

it—I don’t even get an aura8—so really, he

[husband] is the one who ‘goes through it.’

And I don’t want him to’ (female, 42, in

Schachter, Krishnamurthy and Cantrell 2008:

102). This woman avoids integrating such

bodily states into her self-identity—keeping

the impaired body and self-firmly separate—

instead showing concern for how others feel

and what affect that might have on their

relationship. This corresponds with Toombs’

(1995) discussion (following Sartre) of ‘being-

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for-the-Other’, when individuals consider

themselves according to how they think others

perceive them. Worrying that her husband

finds it difficult to cope with seizures, she

constitutes bodily differences in a negative

fashion. These feelings are often compounded

by a sense of shame:

There is also a self-consciousness of how ugly they

must make me seem and a sense of shame of having

been seen this way. I think strangers must see me as

defective. I worry that it affects the image my family

has of me in some subtle way. (Female, 48, in

Schachter, Krishnamurthy and Cantrell 2008: 58)

Losing control of the body not only marks it as

deviant, but devalues the self for failing to live

up to normative visual bodily standards

(Charmaz 1995; Goffman 1963). Significantly,

this stigma is not only ‘felt’ self-consciously,

but is frequently ‘enacted’ by others (Jacoby

1994; Scambler and Hopkins 1986), ranging

from disapproving facial expressions to dis-

crimination in the workplace. The following

individual feels: ‘ashamed especially when

students laugh and make fun of me which

happens often during a seizure’ (anonymous,

in Schachter 2008: 51).

It is no wonder then that people, to varying

degrees, take steps to conceal the visuality of

seizures. One strategy is in reacting to ‘auras’,

which act as embodied ‘warning signs’ (such

as an odour or feeling of sickness) indicating a

seizure is imminent. The priority on sensing an

aura for the following person is concealing the

body from view: ‘when I feel the aura, I go to a

place where nobody can see me’ (age 36, in

Schachter and Andermann 2003: 93). Auras

urge rapid evaluation of surrounding space to

influence such factors as, ‘Where will it

happen? Will I be around strangers? Will I be

safe?’ (Female, 27, in Schachter, Krishna-

murthy and Cantrell 2008: 21). Concerns for

the social hence cannot be disentangled from

thoughts of safety for the self. Individuals’

reluctance to disclose their epilepsy may even

spark a ‘battle with myself as to whether I will

admit that I may be getting a seizure to anyone

who is there’ (anonymous, in Schachter 2008:

15). This is because people with epilepsy are

acutely aware of the ramifications of having

seizures. Even if during an episode the self is

neither ‘here’ nor ‘there’, the loss of bodily

control causes variable socio-emotional dis-

tancing that is both ‘here’ and ‘there’. This

refers to the simultaneous but different

experiences of witnesses and the person

‘seized’; it reveals something of the double

absence of being located in socio-material

space (but usually being unaware of it) while

perceiving time–space completely differently

from others, or not at all. People may wish to

keep hidden what is only visible episodically

such that it seems seizures happen neither

‘here’ nor ‘there’, materially and spatially, to

create the impression episodes are ‘neither

here nor there’—a matter not worth worrying

about—socially and emotionally. However,

due to the stigma of losing bodily control in

seizure, epilepsy is problematic for individ-

uals’ sense of identity, which is continually

(re)shaped by feelings (Davidson and Milligan

2004: 524) that are intersubjective and

influence future spatial behaviours, a point

deserving closer attention. The following

section considers the extent to which people

feel out of control of their bodies, and how

they struggle to maintain or regain control.

Border control: the embodied struggleagainst ‘invasion’

Written testimonies reveal the epilepsies’

protean symptoms, which have profound

influence as individuals grapple against bodily

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invasion by the ‘enemy’ (anonymous, in

Schachter, Montouris and Pellock 1996: 16).

In the words of Margaret, ‘with frequent

seizures punctuating my life, I always seemed

to be engaged in some struggle or other’

(Margaret, 31, in Chappell and Crawford

1999: 5). Lack of success in controlling

seizures can be deeply frustrating and upset-

ting, giving rise to feelings of being ‘out of

control’:

When I have a seizure, I am not usually aware of

what is happening. I become very disorientated,

confused, and sometimes lost. I may black out and

fall. Seizures are very unpredictable, and that makes

them scary. (Female, 39, in Schachter,

Krishnamurthy and Cantrell 2008: 64)

Seizures are variously described as being at

once intangible and yet objectifiable, reflecting

perceptions of a disjuncture between self and

body, as for Jane (2008), whose seizures make

her feel her ‘body is being extremely unreason-

able’. This ‘disobedience’ sparks internal

conflict over control of the body. The fear of

being forcibly disembodied from the self and

surroundings prompts heightened awareness

of bodily boundaries to delineate where the

body ends and social space begins. Small

numbers of people report being able to

counteract the onset of a seizure (following

an aura) by focusing intently on surrounding

space: ‘If I concentrate on what I’m doing—

concentrate very hard and try to listen to

what’s actually going on around me, it soon

leaves’ (anonymous, in Schachter 2008: 55).

However, it must be noted that ‘the success

rate of this method of diverting attacks is

reasonable at best’ (Igoe 2008: 140). After an

unavoidable episode, during the ‘body’s

attempt at putting itself back together again’

(anonymous, in Schachter 2008: 62), many

come to reflect upon the self not as a reliable

entity (as presumed previously) but as one

with unfixed boundaries. Following Moss and

Dyck (2002: chapter 7), we can assert that this

experience renders both bodies and borders

unstable. Not being able to compete directly

or consistently in small battles against

seizures’ breaking-down of the borders,

many adopt indirect, embodied counter-tactics

to adapt to the epilepsies’ recidivistic nature.

Maintaining the body against epilepsy’s acts

of ‘terrorism’ (Axelrod, quoted in Gerrie

2010) is, in part, contingent upon such

variables as tiredness, medication, emotional

states and immediate socio-spatial contexts,

where seizure triggers may be present. Hence

recognising why seizures might be triggered

increases the chances of deterring them.

Individuals (re)assess if and how they should

participate in various activities in relation to

these critical factors:

I volunteer in my children’s school as a presenter of

a monthly program. I had to plan out carefully what

to do if I began to have a seizure in front of my son’s

class. This, of course, increased my stress, and,

consequently, my risk of seizing. I will likely avoid

these kinds of ‘public appearances’ in the future.

(Female, 48, Schachter, Krishnamurthy and

Cantrell 2008: 57)

This reveals a vicious cycle in that stress can

trigger seizures, while working in public

causes stress due to the fear of having seizures.

Yet any resolve to limit one’s social geogra-

phies is rarely easy. Social pressures regularly

undermine the discipline required to ‘police’

the body’s borders:

I don’t have a problem with just having one or two

drinks, but the vast majority thinks you are odd for

not ending up laughing on the floor. I should not

have to justify my actions to anyone that is

particularly sarcastic to me about [my not]

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drinking, but I don’t want to alienate myself by just

walking away. [ . . . ] I know of people on high doses

of medication making a regular habit of getting

drunk so that they don’t feel stupid. Yes it is a

personal decision/risk to take, but you cannot

pretend that it’s not happening. (Anonymous, in

Epilepsy Action 2001)

Staying up late and drinking alcohol can

trigger seizures, and, therefore, this author

elects self-exclusion from (the extremes of)

such behaviours despite peer pressure. In this

way, enacting strategies to avoid environmen-

tal or socio-emotional triggers can reduce the

number of seizures a person has and foster

relative security in different situations. Taking

control of defining the limits of their social

space allows individuals to define what it is to

live with epilepsy socially and physically, thus

revealing how their identities shift and change

(Moss and Dyck 2002: 130). As Hanna (2010)

puts it, ‘I have learnt that my epilepsy gives me

certain boundaries and rules that I have to

accept and respect, like getting regular sleep.’

People may choose to expand or contract their

borders according to the relative control or

predictability of seizures, though it is import-

ant to note that no matter how secure the

boundaries feel, they might at any time be

destabilised by sudden, unexpected and see-

mingly untriggered seizures (a theme to which

I return in the final section).

Taking regular AEDs is the most widespread

method of control, although there are many

different types of AEDs and no guarantee of

negotiating a combination that prevents or

reduces both seizures and side effects:

[After diagnosis] came the trial and error of drug

treatment in the search for a balance in my life

which would afford me fewest side-effects with the

fewest seizures. I still have seizures, I still suffer side-

effects, but I am able to function as near to normal

as possible. (Heather, 40, in Chappell and Crawford

1999: 8)

This reflects ‘a bodily, material, concrete

struggle’ (Moss and Dyck 2002: 110), a

process constitutive of the experience of

epilepsy and associated bodily limits. Whereas

medications can control seizures, they can also

make one feel ‘“slow” on them. It was like I

was living at the bottom of the ocean all the

time’ (Seabrook 2000). Mary (Epilepsy Action

2001) finds that AEDs ‘have taken over my

body, slowed it down and bloated it so that

each day is a battle against fatigue and fat.

Like a cruel tyrant lover, I need them but

despise them’. An inevitable reaction is

speculation as to whether taking medication

is on balance worth the trouble, and, in effect,

people may choose their battles: continue with

AEDs (and their side effects), or avoid side

effects through non-compliance (but risk more

seizures). Evidently, ‘control’ means more than

simply averting episodes (by AEDs or bodily

struggle), which for many is unrealisable.

Being able to choose, on one’s own terms, how

to counter the precariousness of living with

epilepsy facilitates the continuous pursuit of

an acceptable level of bodily border control,

even if ‘the challenge of searching for control

and management has demanded persistence

and fortitude’ (Heather, 40, in Chappell and

Crawford 1999: 7). Short ‘battles’ against

seizures’ onset are accordingly framed within a

longer ‘war’. And as with any war, it requires

diverse temporal and spatial considerations

that render planning everyday life (and its

geographies) increasingly complex, signalling

multiple ‘practical difficulties, most not

immediately, if at all, obvious to someone

not affected’ (Igoe 2008: 156).

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(Un)predictability and risk: placing therelatively unstable body

Seizures can be fleeting, but as Dennison9

explains, ‘imagine having a blackout, no

matter how brief, whilst boiling a kettle of

water [on the stove] or crossing the road! It

doesn’t take long to turn an everyday activity

into a disaster’ (Dennison 2004: 75). Lapses in

time–space perception and the danger of

injury increase in proportion with the severity

of episodes. Following dramatic seizures it can

take several hours, or even days, before

‘normal’ feelings are regained and bodily

boundaries rebuilt. Extended periods of rest

are often required, not least if injuries have

been sustained: ‘I have had many serious falls,

some actually involving plastic surgery [ . . . ] I

have broken my nose on more than one

occasion [ . . . ] my ribs have been cracked or

broken many times’ (Dennison 2004: 29–31).

Routines once taken-for-granted are deliber-

ately discontinued or forcibly altered to

accommodate potential losses of control.

Ascertaining the relative predictability of

episodes, alongside seizure triggers, becomes

fundamental in the ongoing struggle to

manage the ‘chaotic’ body (Moss and Dyck

2002: 113). Numerous testimonies describe

when seizures tend to occur, for example, ‘my

seizures are usually a 2-day pattern of 6–8 a

day about every 3 weeks almost to the day and

time’ (anonymous, in Schachter 2008: 29). For

women,10 hormonal changes or the approach

of menopause can alter seizure patterns

(Schachter, Krishnamurthy and Cantrell

2008), with episodes occurring ‘at least once

a month due to my period. The seizure comes

either at the beginning of the cycle or at the

end’ (female, 39, in Schachter, Krishnamurthy

and Cantrell 2008: 29). Predicting seizures is,

however, never an ‘exact science’, as revealed

by Dennison: ‘I may feel fine and therefore

able to go out but the seizures just happen—

out of the blue—so it is difficult to predict

when I am at risk’ (Dennison 2004: 48).

Whether seizure patterns are more or less

predictable, episodes might happen at any

time, thus presenting dilemmas over whether

to ‘trust’ the unstable body in different

situations. Some downsize their social geo-

graphies, while others resist perceived bodily

constraints. Dennison tells how ‘there was a

stage when I would never leave the house and

would be on my own for hours. However, my

family convinced me that seizures would occur

whether I was in the house or not’ (Dennison

2004: 74).11 In refusing to live as prisoner to

the ‘whims’ of the brain’s electrical activity she

resists avoiding from public places so as not to

unsettle the social order. Nonetheless, this

opens up multiple concerns, both physical and

social: this risk is also the risk of being judged

by others, of injury to the self and body when

‘out of place’:

Because I refuse to let epilepsy rule my life, I have

also made myself a victim of where I have seizures

and so must accept the indignity of them in shops,

restaurants or at social gatherings. I must also

accept the fear of dangers and of seizures when I am

alone or in the street. (Heather, 40, in Chappell and

Crawford 1999: 7)

The unpredictable body renders space unpre-

dictable, requiring that even the most mun-

dane of tasks, in the most familiar places, must

be (re)negotiated. Knowing when one is

particularly susceptible to seizures allows

routines to be devised in respect of those

times so as to maintain a sense of control over

the circumstances surrounding potential epi-

sodes. Indeed, people work with rather than

submit to risk:

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the day has to be thought about and planned most

carefully to cope with the frequent seizures. Being

particularly prone to seizures in the morning, I

keep safe by getting dressed whilst sitting on the

bed. (Dennison 2004: 43)

Epilepsy’s episodic nature informs these

practices, such that the mapping of space and

time is inseparable: the potential for being

in/on safe space is maximised during periods

‘absences’ are most likely. People may also

prepare reactive contingency plans such as

returning to a pre-determined ‘safe place’

when an aura is experienced: ‘I would lie on

my kitchen floor if I had a seizure because the

kitchen was empty and so I couldn’t hurt

myself there’ (female, 37, in Schachter,

Krishnamurthy and Cantrell 2008: 42). Such

familiar, everyday spaces may be re-organised

materially and socially to accommodate the

volatile body through such tactics as reposi-

tioning furniture and informing others what to

do in the event of a seizure. The rearranging of

home-spaces echoes across the geographical

literature, such as in work by Dyck (1995),

Crooks (2010), Imrie (2010) and Segrott and

Doel (2004). With epilepsy, the loss of bodily

control raises fears of causing injury to others

(Raty and Wilde-Larsson 2011) and so the use

and planning of ‘safe places’ may also be for

their benefit:

To prepare to be a mother I had to take into account

that my seizures may get in the way. As a result, we

needed to organise our home so that each area of

our house had a safe area to put a child. I generally

get a warning prior to my seizure, and it is during

this time that I would place a child in a safe area.

(Female, 33, in Schachter, Krishnamurthy and

Cantrell 2008: 75)

Such initiatives implicate not only how

people order and move through space, but also

how it is delineated. As Toombs (1995: 9) puts

it, ‘lived body disruption [ . . . ] includes a

change in the character of surrounding space,

an alteration in one’s taken-for-granted aware-

ness of (and interaction with) objects, and a

change in the character of temporal experi-

ence.’ In light of the dangers of losing bodily

control, spaces or activities presumed to be

accessible take on a different character,

possibly becoming unsafe, some or all of the

time. In response, the minutiae of activities,

perhaps second-by-second, are brought to the

forefront of consciousness and strategies are

developed that leave little to chance:

I make sure I stand well back from the kettle just in

case I have an absence and scald myself. I try to

move out of the kitchen as soon as I can because it

has a concrete floor which would make (and has

made) a painful landing. Even sitting down to drink

a cup of coffee has to be thought about [ . . . ] I sit

well back on my chair, as sitting on the edge would

turn a seizure into a fall. (Dennison 2004: 43)

Here, the kettle loses its ordinary status as a

device for boiling water; the kitchen floor loses

its ‘neutrality’, becoming a hard surface where

injuries could be sustained. Consequently

individuals alter where and when they do

things informed by risk assessments of the

constitutive elements of surrounding space.

Furthermore, these tactics are always rela-

tional:

Preparing the evening meal really has to be thought

about. I prepare the meal but never start cooking it

until there is someone else in the house [ . . . ] The

meal may take longer to cook but really it is for the

best. [ . . . ] At the end of the day when we go upstairs

to bed my husband follows me up the stairs so he

can catch me if I fall. We do exactly the same in

railway stations or shopping malls where there are

escalators, or when using any form of step in fact. I

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stand sideways on the escalator—just in case.

(Dennison 2004: 45)

In the latter part of the quote, Dennison not

only positions her body according to the

movement of the escalator but in relation to

the position of her husband’s. Evidently,

having close relationships has a bearing on

the types of tactics people use. This is

compatible with Elliott et al.’s (2011) study

that found married people were significantly

less likely to fear being injured during a seizure

owing to tactical and emotional coping

assistance. Useful parallels are seen also in

Dyck’s (1995) findings that marital (and socio-

economic) status mediated how women with

MS renegotiated their lifeworlds. As the

example of Dennison herein shows, the coping

strategies enacted must be considered in

relation to how an individual is positioned

physically, socially and materially. Dennison’s

writings exhibit examples, following Crooks

(2010), of a life that is ‘unpredictably routine’,

owing to the unforeseen ways epilepsy shapes

her life; but also ‘routinely unpredictable’ in

that seizures can never be predicted exactly,

but frequently disrupt the fabric of everyday

life, creating contingencies to which she must

react. These circumstances are particularly

meaningful because they show us that how

people make sense of and adapt to a life with

epilepsy is situated through experiences—and

knowledge—of the changing body, social

relationships and surrounding space, and set

within the context of seizures’ role as the

‘Sword of Damocles’: that sense of precarious-

ness, when a seizure can happen at any time,

yet is restrained by a fine balance of various

factors maintaining bodily and social bound-

aries. Seizures are generally, and unavoidably,

unpredictable, yet individuals perform crea-

tive practices to manage the volatile body and

affirm the dignity of risk (Wolpert 1980).

Conclusion

This paper has foregrounded the everyday

experiential geographies of people living with

epilepsy, and shown how ‘brainstorms’, refer-

ring to both seizures and ideas of how to cope

with them, are embodied. Specifically, I have

explored the nature and consequences of

episodic losses of control of the body, how

people struggle to prevent or reduce such

occurrences, and what preparations are made

for when they inevitably—yet relatively unpre-

dictably—will occur. In so doing I have sought

to connect epilepsy with scholarship across

chronic illness, disability and mental health

studies, but also demonstrate ways in which

embodied experiences of epilepsy differ from

other illnesses and impairments. Emphasis has

been placed on the time before, during and after

an episode. If a person experiences an aura they

may in some way prepare, but in general the

circumstances of when and where a seizure

strikes must be pre-empted, thus disrupting

peoples’ relationship with the social and

material world. Mundane practices become

imbued with meaning while people fight to

maintain their corporeal boundaries against

seizures’ sudden trespass, but as the body is

never guaranteed to stay in control at any given

moment, no space or activity is ever completely

‘safe’. Where seizures occur is significant

because afterwards people will have to contend

with the socio-emotional repercussions in

addition to corporeal impairment and so falling

out of social consciousness—the mind/body

being ‘out of place’—is problematic for individ-

uals’ sense of self. The extent of peoples’ social

geographies, then, varies with willingness to

take risks in terms of when, where and how

often seizures might occur, which is held in

tension with (immediate and longer term)

knowledge of the unstable body and surround-

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ing space. Findings correlate with many other

studies of health-related conditions, in which

people experience ‘gooddays and baddays’ (see,

e.g. Wilton 1996); but broaden distinctions of

bodily impairment as being visible or invisible

(epilepsy is both, perhaps at different times); of

symptoms fluctuating (people can be ‘seized’

aggressively and without warning) and of loss of

control of the body (seizures instantly transform

loss of complete control of the body into

complete loss of bodily control).

By underscoring how different people

experience the same seizure events differently,

I have shown that giving voice to individuals

with epilepsy allows viewpoints to be heard

that may otherwise be silenced or excluded

(Winchester 2000). Testimonies demonstrate

that illness is not a passive reaction to external

conditions and events but entails active,

constructive and selective practices (Robinson

1990: 1185), taking into account local,

embodied knowledges. Such dynamic pro-

cesses involve renegotiating the spaces of

everyday life in ways that are not obvious to

those on the ‘outside’. Written narratives

therefore have great potential for providing

spaces of support, facilitating the co-construc-

tion of relational coping strategies and

challenging mainstream, stigmatising views

of epilepsy. They also provide source material

from which to engage wider geographies of the

self, body boundaries (for a range of examples

on this theme, see the special issue of Social &

Cultural Geography (12(4), 2011a) on ‘The

limits of the body: boundaries, capacities,

thresholds’) and of care of the (dis)abled body

(see, e.g. the special issue of Social & Cultural

Geography (12(6), 2011b) on ‘Care of the

body: spaces of practice’).

Narrative analyses (which can be

approached in various ways: see Hones 2011;

Leyshon and Bull 2011) can further provide a

complementary and insightful resource for

clinical understandings, wherein the effects of

medications can best be assessed on an

individual level, taking into consideration

how a person’s feelings and behaviours are

implicated in the management of her/his

condition. Indeed, epilepsy is more than a

medical diagnosis, and by emphasising indi-

viduals’ changing spatial and temporal experi-

ences testimonies highlight that more can be

done to work towards inclusive and accessible

public/social space, where seizures are not seen

as deviant or abnormal, but an everyday—and

perfectly ‘normal’—phenomena (Hansen and

Philo 2007). The stigma of epilepsy can be

addressed by rendering the bodies of people

with epilepsy visible rather than invisible;

present even if absent; something talked

about, taking seriously the multiple subjectiv-

ities of individuals from whom others regularly

turn due to the difficulty of witnessing seizures.

Epilepsy studies may usefully be developed

alongside a radical body politics (Moss and

Dyck 2002) that does not conceptualise the

body with epilepsy in opposition to the

normative body, but recognises that all bodies

are involved in complex, relational and

intersubjective corporealities. In this way, we

may acknowledge and respect difference rather

than deny it. As Heather puts it,

My involvement with support and education for

people with epilepsy and, in particular, for children

and their families and teachers has consistently

demonstrated that my own experiences are not

unique. Living with epilepsy is a requirement for

society and not just the person. (Heather, 40, in

Chappell and Crawford 1999: 8)

Acknowledgements

I thank the authors whose testimonies

informed this paper. I also extend my gratitude

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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 utilise dans

son sens habituel d’un coup d’inspiration; l’auteur

entend par « brainstorms » un sens plus litteral qui

correspond a la condition medicale dont l’article

s’agit.

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Abstract translations

Les « tempetes de la cervelle » 12 incarnees: lesgeographies experientielles de la vie epileptique

Cet article examine les interactions complexes dansla vie d’une personne souffrant d’epilepsie entre lecorps instable, l’espace ambiant, et les relationssociales. Je maintiens a partir des temoignages ecritsque l’etendue spatiale de la vie de tous les jours varieselon la volonte de prendre des risques socio-emotionnels ainsi que materielles en termes dequand et ou la perte du control du corps risque de seproduire. Je suggere aussi que les espaces et lesactivites consideres auparavant comme acquisperdre ainsi leur securite et ils requierent alors desrenegociations au fur et a mesure que la confianceinvestie dans les limites du corps est troublee. Lesconclusions confirment en meme temps qu’ilspartent des recherches prealables menees par desgeographes au sujet des maladies chroniques et del’infirmite en etant en retenant des caracteristiquestemporelles des symptomes fluctuant et la tendancede la maladie de se manifester soit visiblement, soitinvisiblement. De plus on maintien qu’une differ-ence importante existe entre les moyens de repondrea une perte de controle corporel complet et ceux derepondre a une perte de controle incomplet. Onconclut en affirmant le potentiel de l’utilisation destemoignages ecrits comme donnees de base poursouligner les voix des personnes dont les espacesqu’ils habitent risquent de rester silencieux.

Mots-clefs: epilepsie, temoignage, emotion, risque,limites corporelles.

Encarnando la Lluvia de Ideas: geografıas experi-enciales de vivir con epilepsia

Este articulo se examina la interaccion compleja deconocimiento del cuerpo inestable, el espacio alalrededor y las relaciones sociales que estaninvolucrados en una vida epileptica. A traves uninvolucramiento con testimonios escritos se discuteque la extension espacial de la vida cotidiana sevaria con la buena voluntad tomar riesgos socio-

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emocionales y materiales en terminos de donde ycuando la pierda de control corporal (ataque deapoplejıa) puede ocurrir. Sugiero que espacios yactividades que antes no estaban valorados llegan aser potencialmente ‘inseguro’ y requieren unarenegociacion mientras la confianza en los limitesdel cuerpo estan desbaratados. Conclusiones confir-man pero tambien amplıan los trabajos anteriorespor geografos de enfermedades cronicas porinvolucrar caracterizaciones de las temporalidadesde sıntomas fluctuantes y de enfermedades mani-festando visiblemente o invisiblemente. Ademas se

discute que las maneras de que personas responden

a la perdida completa de control corporal estan

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

habrıan quedado callados.

Palabras claves: epilepsia, testimonio, emocion,

riesgo, lımites del cuerpo.

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