Embodying Brainstorms: Living with Epilepsy

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Embodying brainstorms: the experiential
geographies of living with epilepsy
Niall Smith
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Embodying brainstorms: the experiential geographies
of living with epilepsy
Niall Smith
School 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 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.
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
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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
2 N. Smith

‘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

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 (Kılınç 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.
4 N. Smith

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

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
6 N. Smith

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 Ku¨hn 2008). No matter the manifes-
tations or physical repercussions, seizures
represent ‘a terrible interruption that I don’t

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
8 N. Smith

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,articulatingtheseizureasalivedmoment
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’sthe pre- and post-seizuretimethathas
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-

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 struggle
against ‘invasion’
Written testimonies reveal the epilepsies’
protean symptoms, which have profound
influence as individuals grapple against bodily
10 N. Smith

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]

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).
12 N. Smith

(Un)predictability and risk: placing the
relatively 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:

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
(Ra¨ty 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
14 N. Smith

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-

ing space. Findings correlate with many other
studies of health-related conditions, in which
peopleexperience‘gooddaysandbaddays’(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
16 N. Smith

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 litte´ral qui
correspond a` la condition me´dicale dont l’article
s’agit.

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Abstract translations
Les « tempeˆtes de la cervelle » 12
incarneés: les
geógraphies expe´rientielles de la vie e´pileptique
Cet article examine les interactions complexes dans
la vie d’une personne souffrant d’e´pilepsie entre le
corps instable, l’espace ambiant, et les relations
sociales. Je maintiens a` partir des te´moignages ećrits
que l’e´tendue spatiale de la vie de tous les jours varie
selon la volonte´ de prendre des risques socio-
e´motionnels ainsi que mate´rielles en termes de
quand et ou` la perte du control du corps risque de se
produire. Je sugge`re aussi que les espaces et les
activite´s conside´re´s auparavant comme acquis
perdre ainsi leur sećurite´ et ils requie`rent alors des
rene´gociations au fur et a` mesure que la confiance
investie dans les limites du corps est troubleé. Les
conclusions confirment en meˆme temps qu’ils
partent des recherches preálables meneés par des
geógraphes au sujet des maladies chroniques et de
l’infirmite´ en e´tant en retenant des caracte´ristiques
temporelles des symptoˆmes fluctuant et la tendance
de la maladie de se manifester soit visiblement, soit
invisiblement. De plus on maintien qu’une diffe´r-
ence importante existe entre les moyens de re´pondre
a` une perte de controˆle corporel complet et ceux de
re´pondre a` une perte de controˆle incomplet. On
conclut en affirmant le potentiel de l’utilisation des
te´moignages ećrits comme donneés de base pour
souligner les voix des personnes dont les espaces
qu’ils habitent risquent de rester silencieux.
Mots-clefs: e´pilepsie, te´moignage, e´motion, risque,
limites corporelles.
Encarnando la Lluvia de Ideas: geografıás experi-
enciales de vivir con epilepsia
Este articulo se examina la interaccioń compleja de
conocimiento del cuerpo inestable, el espacio al
alrededor y las relaciones sociales que estań
involucrados en una vida epile´ptica. A trave´s un
involucramiento con testimonios escritos se discute
que la extensioń espacial de la vida cotidiana se
varia con la buena voluntad tomar riesgos socio-
20 N. Smith

emocionales y materiales en te´rminos de donde y
cuando la pierda de control corporal (ataque de
apoplejıá) puede ocurrir. Sugiero que espacios y
actividades que antes no estaban valorados llegan a
ser potencialmente ‘inseguro’ y requieren una
renegociacioń mientras la confianza en los limites
del cuerpo estań desbaratados. Conclusiones confir-
man pero tambień amplıán los trabajos anteriores
por geo´ grafos de enfermedades cro´ nicas por
involucrar caracterizaciones de las temporalidades
de sıńtomas fluctuantes y de enfermedades mani-
festando visiblemente o invisiblemente. Adema´s se
discute que las maneras de que personas responden
a la perdida completa de control corporal estań
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
habrıán quedado callados.
Palabras claves: epilepsia, testimonio, emocioń,
riesgo, lı´mites del cuerpo.

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