Skinny size me: some women dramatise their inner conflict by shedding weight. Photograph: Ben Stockey
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The anorexic statement

Trust me, notice me, feed me: every female body conveys a message. So, when a woman starves herself, what is she saying?

I knew a woman whose job it was to take anorexics to the swimming pool. She was an occupational therapist: eating disorders were her field. She worked at a nearby clinic and we bumped into one another from time to time.

I found myself curious about her work, or more truthfully about her patients, those singular modern-day martyrs to the cause of their own bodies. Without quite knowing why, as I have grown older I have become more interested in – it could even be said, more respectful of – what might be called the anorexic statement. Perhaps it’s because, as the 45-year-old English mother of two children, my body has little power of provocation or utterance; or rather, that what it’s said or tried to say through the years hasn’t seemed to have added up to all that much. Quite what constitutes the anorexic statement I’m not entirely sure. All the same, it has a great power of disruption. It’s a stray spoke under the wheel of things that otherwise have the capacity to hurtle on headlong: family life, fashion, the destiny of the female body. The statement might be: help me. Or it might simply be: stop.

My therapist acquaintance herself had not been allowed to be picky in life, growing up in a family of brothers on a farm in the Australian outback. She knew how to shoot, drive a tractor, ride a horse bareback. She had left that rough home and come to the UK, where every couple of years for the sake of change she moved job and town – Slough, Birmingham, Chelmsford – though her solitude and her line of work did not alter. She neither sought nor seemed to expect much in the way of pleasure. In the evenings she made a sandwich and read a book in her rented room; her main meal was lunch in the canteen at the clinic, where food was plentiful and cheap. This somewhat joyless attitude to nourishment could come as no surprise, given that she spent her days among females who regarded the ingestion of a teaspoonful of peas as a physical and spiritual crisis. Once a week she led them to the poolside, skeletal and pale, for all the world to see. Even at the swimming pool these curious beings detected the threat of penetration, of the outside coming in. They didn’t want to get in the water, not, apparently, because they felt self-conscious or exposed, but for fear that they might swallow some of it without its calorific content having been established.

The easiest thing that could be said about my acquaintance was that she herself was impenetrable. Her choice of career must have sprung from some initial attraction to or sympathy with the anorexic state, but most often what she appeared to feel for her waifish charges was irritation, even anger. Anger is a common response, it seems, to the anorexic statement. At the very least, returning from a day spent on the receiving end of that statement, my acquaintance was hard put to feel – as they say – good about herself. If the anorexic is someone for whom the relationship between female being and female image must, on pain of death, be resolved, it may be that she denies that resolution to those who cross her path. They become the witnesses of her vulnerability; as such, she is more real than they. Like with the ascetic of old, her self-denial is a form of chastisement, yet the extremity of her appearance is confusing. Being female, it seeks attention, but of an unusual kind. It asks to be mothered – yet what if its aim is indeed to challenge the reality of the mother-figure and overpower it, to triumph over her, to consign her to flesh and steal her image? The anorexic is out to prove how little she needs, how little she can survive on; she is out, in a sense, to discredit her nurturers, while at the same time making a public crisis out of her need for nurture. Such vulnerability and such power: it brings the whole female machinery to a halt. My acquaintance had tales of rudeness and tantrums and sulks, of behaviour more commonly read about in childcare manuals (of the kind whose purpose, we are told, is to “test the boundaries”), even of a degree of personal insult which at the very least, I suppose, mothers aren’t paid to tolerate. She had no children of her own. And so, in an admirable interpretation of the social contract, she recognised she had something in that line to give.

Jenefer Shute offers some riveting descriptions of such interactions, between the anorexic inpatient Josie and her carers, in her novel Life-Size. “In the body,” Josie chillingly muses, “as in art, perfection is attained not when there’s nothing left to add, but when there’s nothing left to take away.”

Armed with this credo, she can exercise contempt on everyone around her (“They say I’m sick, but what about them, who feast on corpses?”), in what becomes a radical reliving of her primary experiences of nurture. And it needs to be radicalised: this is the moral value of the anorexic statement, that it asks questions not just of mothers or fathers or fashion editors, but of the whole societal basis for the female image. This time around, Josie can speak her mind. She can criticise the people who care for her; she can re-experience the powerlessness of childhood and know it for what it is. So unpleasant is she to the “freckled cow” who nurses her that she finally gets the reprimand she has apparently been asking for:

“Josephine, I must ask you please not to speak to me like that. I’m not your servant.” And then, unable to contain herself: “And would you please look at me when I talk to you? It really gets on my nerves.” Coldly, victoriously, I remain precisely as I am. She really should have more control.

Soon after, however, the 68-pound tyrant, having agreed at last to eat something or be force-fed through a tube, makes a revealing request of her nurse: “I want you to feed me,” she says.

My acquaintance found it hard to muster much interest in herself at the day’s end. She rarely went out or saw people: it was as though her work had bled her of confidence. She sought not public interactions but the determined security of her private boundary. In the evenings she changed into loose clothes, shut herself in her room, shut herself into a book. She wanted to be where no one could demand anything of her, like a depleted mother, except with none of the prestige of motherhood. She never kept company with men, and her female world was wholly predicated on an insidious notion, that certain women are there to give attention and others to receive it. Sometimes it seemed that her patients had indeed stolen her image and left her with nothing to trade, nothing to barter with for some share of the world’s interest. They had stolen her image and left her a mere body that could find no reflection or definition for itself. She went back home for a few weeks on holiday and returned browner, more animated, and heavier. All that meat they went in for, meat roasted over a fire and served at every meal. But more to the point, a world in which food was an entitlement and a human bond.

In her own world food had become a weapon: her evening sandwich and her indifference were a kind of savourless pacifism she exercised against it. She spent her days among people who denied themselves food in order to experience, perhaps, power, whose apparent intention to make themselves invisible made them, in fact, visible, who had discovered that by becoming less they became more. And no­where was this clearer than in the fact that they required her as their witness, for disappearing was no fun unless someone noticed you’d gone. But if anyone was disappearing, if anyone was becoming invisible, it was she.

The question of how she had come to be stranded in this place remains difficult to answer, but its source may lie in the very practicality – the tractors, the horses – she had crossed the world to escape. Denied her own experience of femininity, she had perhaps embarked on a kind of pilgrimage to find and serve these notable victims to the riddling perversity of feminine values. She could help them, sit with them while they wept and shrieked over a teaspoonful of peas, she who had never had the temerity to question or refuse anything she had been given; she who was not important enough, as it were, to be anorexic, for the hieratic significance of the anorexic body depends on it having been ascribed a value in the first place. Had she tried to starve herself on the farm where she grew up, she might simply have died: her protest, in any case, would not have been understood. She had taken photographs of this place, on her recent trip home. In order to capture its isolation, she had photographed it from a distance, recording the miles of surrounding scrubland in a sequence of separate frames that she laid one next to another across the table in a long connecting strip. Amid these featureless wastelands she defied me to locate her home, and though my eyes searched and searched the landscape it was true that I could find no evidence of human habitation. She laughed, with an unmistakable and strangely exhilarated pride, and laid her finger over a low brown shape that crouched amid the boulders and bushes that extended all around it, on and on to the white horizon. It was so small her fingertip covered it. “There it is,” she said.

It may seem superfluous for a 45-year-old mother-of-two to say that she does not exult in the life of the body, but let’s just call it a place to begin. At the very least, as a statement, it raises numerous lines of inquiry. One might be: is it obligatory, or even a moral duty, to take pleasure in one’s own physical being? Leaving aside for a moment the question of what definition of pleasure one could possibly arrive at in this particular hall of mirrors, is the value of the physical quest in any way comparable with that of the artistic, the emotional, the spiritual?

I understand the anorexic’s notion of pleasure far better than the hedonist’s. Sometimes it has seemed to me that the second kind of pleasure is consequent on the first, that the life of sensation can be accessed only from a place of perfect self-discipline, rather as strict religious practices were once believed to constitute the narrow path to heaven. The anorexic, like the ascetic before her, publicly posits the immolation of the flesh as a manifestation of a primary physical discontent she is on her way to escaping: she represents a journey whose starting point is disgust. Body is found to be not only intolerable to but weaker than mind – how, then, can its desires and yearnings be taken seriously? The anorexic statement suggests a second body, one that will be painstakingly encroached on and attained; and hence, a second template for desire. This second body will belong to its owner as the first did not: its desires, therefore, will be experienced as not shameful, but true.

The female form is inherently susceptible to this duality, but the difficulty with the anorexic statement is that once it becomes open to other readings it breaks down. At some point in the journey a line is crossed: the slim body becomes the freakish starved body, and one by one the anorexic’s grounds for superiority are discredited and revoked. She is not beautiful but repellent, not self-disciplined but out of control, not enviable but piteous, and, most disappointing of all, she is publicly courting not freedom and desire but death. Even she may find these things difficult to believe. How to go back, on that journey? How to retrace one’s steps? For in getting where she needed to go the anorexic had to sacrifice the concept of normality. In a manner of speaking she sold her soul. She can never be “normal” about food or flesh again. So, how is she meant to live?

If the anorexic arouses irritation, even anger, it may be this quitting of normality that is to blame, because the female management of normality is a formidable psychical task from which most women don’t feel entitled to walk away. By quitting it she exposes it, she criticises it as a place to live, and moreover she forces each woman who passes her way to choose between denial and recognition of her statement, disgust.

Is it disgusting to be a woman? Menstruation, lactation, childbirth, the sexualisation of the female body – in recognising these things as her destiny, a girl is asked to forget everything that her prepubescent instincts might formerly have suggested to her. In becoming female she must cease to be universal, and relinquish the masculine in herself that permitted her as a child to find the idea of these things disgusting indeed. Likewise that masculine is now embodied for her in men, so the question becomes – do men find women disgusting? The anorexic statement dispenses with that perspective. It returns the woman to the universality of the child, and from that fusion formulates itself: I find myself disgusting.

If it has become a cultural cliché that women want to be thin more than they want to be loved (the three most cherished words these days, so the saying goes, being not “I love you” but “You’ve lost weight”), and moreover that they want to be thin not for men but for one another, the general observer might be tempted to view this as making the case for male innocence (at last!), even male redundancy.

Yet, looked at another way, the male and the preponderance of male values are perhaps more culpable in the incrimination of the female form than ever. An eating disorder epidemic suggests that love and disgust are being jointly marketed, as it were; that wherever the proposition might first have come from, the unacceptability of the female body has been disseminated culturally. Is it possible that disgust has finally got, in the famed male gaze, the upper hand? From whom, after all, has a woman ever wished to hear the words “I love you” but a man?

In Life-Size, Jenefer Shute posits the anorexic state as having two separate sources, one in the female (subjective, mother) and the other in the male (objective, father). Between them they engender in the anorexic subject the confusion between being and image of which one might suppose her to be merely an extreme cultural example. Mother – the female body – is indeed the source of disgust, but it is father – if one can be permitted the leap of seeing father as analogous with male and, indeed, with society – who makes that disgust public and hence catalyses it into shame. Without father, mother might merely have passed her disgust silently on to daughter, where it would have remained as an aspect of her private, interior being. But father brings it to the surface: it is something not just felt but now also seen. These confirmations, in Shute’s narrative, of interior suspicion (am I disgusting?) by outward commentary (yes, you are) are fatal to female self-perception in ways that might seem obvious but are none­theless intractable.

Outside and inside – image and being – are now held to be one: the girl/woman revisits and tests this impossibility by becoming the observer – the male – herself, looking at and remarking on the bodies of other women. Naturally, the discovery that image can be changed is not new: it is and always has been part of becoming a woman, in a sense that, although slenderness has long been a feminine ideal, self-hatred and the compulsion to starve oneself to death have broadly not. The question of disgust returns, accompanied by its shadow, the question of pleasure.

A personal admission: not long ago, in a period of great turmoil, I lost a considerable amount of weight. The first thing to say about this is that I was unaware, inexplicably, that it had happened. That my clothes no longer fitted passed me by: I noticed it only because other people told me so. They appeared shocked: each time I met someone I knew, there it would be, shock, a startled expression on the face. At first, I was startled in turn. They were not seeing who they expected to see; who, then, were they seeing? After a while I got used to it: indeed, I came to expect, almost to require it. A newborn baby needs to be mirrored by another human being in order to grasp that she has an outward surface, that this “self” has an appearance, that her image speaks. Through the shock of others I learned that I, too, had been shocked, that I was no longer the person I once was. My image was speaking, to me as well as to other people, telling me things I did not yet appear to know or realise.

But eventually the question of “normality” returned, as it must in the life of a 45-year-old mother-of-two. Stop, help me, feed me: this may have been my cry, but the truth was there was no one, any more, to answer. There could be no illusion, as an adult; I had left it too late to stage this apotheosis, this defeat of the first body, predicated as it is on the expectation of rescue. I had to draw back from it myself. And this was where the problem arose, because, like the anorexic, I found I could not retrace my steps, could not, as it were, go back to sleep. For years I had lived in my body half-consciously, ignoring it mostly, dismissing its agendas wherever I could, and forever pressing it into the service of mental conceptions that resulted, almost as a by-product, sometimes in its pleasuring and sometimes in its abuse. People were always telling me I should do yoga: this was one of the running jokes I had against my own flesh, for the idea that I would suspend the intellectual adventure of living even for one hour to dwell in the dumb and inarticulate realm of the auto-corporeal was as unappealing as that of spending an evening with someone I disliked. Now, as the weeks passed, instead of shock, my appearance was beginning to elicit milder manifestations of concern. I didn’t know what it meant: had I changed again? Was I no longer fragile and vulnerable? I had no idea. Never before in my life had I dared to be fragile, and all I knew was that I wasn’t ready to leave what I had become. “Have you ever thought of doing yoga?” someone said.

As a teenager I had been tormented by hunger and by an attendant self-disgust, for I saw in other girls a balance, an openness of form, that suggested they had nothing inside of which they need be ashamed. Their bodies were like well-schooled ponies, handsome and obedient, whereas I had a monster inside me whose appeasement was forever disrupting the outward surface of life. It craved so many things it could barely discriminate between them, and so indiscrimination – the failure to distinguish between what mattered and what didn’t, what helped and what didn’t, what it needed and what just happened to be there – became its public nature. It wanted, in fact, what it could get, in the light of what it couldn’t.

How thoroughly the tangible and the in­tangible confused themselves in those years. Creativity, the placement of internal material into space, the rendering tangible, became my weapon against that confusion.

When I left my boarding school – the blue serge uniform and the Cambridgeshire drizzle, the plates of stodge that were so predictable and real, the torturing sense of female possi­bilities that were not – I learned to manage the monster, more or less. Like the first Mrs Rochester it had a locked room of its own, from which it sometimes succeeded in breaking free to rend into shreds my fantasies of femininity, but I had set my mind on higher things. By locking up the monster I was making myself at heart unfree: what did I know of freedom in any case? I was accustomed to fantasy and to the safety – albeit uncomfortable – it supplied, and the notion of an integrated self was the most uncomfortable fantasy of all. In a sense, it was the monster: I could neither kill it nor live with it, and so there it remained, caged, bellowing and banging intermittently through the years, creating perhaps the sense of something amiss in those who came close to me, but caged all the same.

Yoga, understandably enough, was out: nothing could have persuaded me to enter that cage armed only with a sun salute. But my sudden emaciation in middle age did bring me into contact with the monster again, for, amid all the other losses, there in the rubble of the desecrated life, I appeared to see it lying dead at my feet. The Jungian notion of the “middle passage”, in which at mid-life all the templates for self expire or fall away, in which with sufficient destruction one has a chance to return to the blankness of birth, might have explained that death well enough to avoid detection: it simply went up in the fire, the horrible secret, along with everything else. And here, after all, was a chance to be free of my own image, the bind in which my body had held me for all these years, because, while wanting more than anything to be feminine, I had only and ever found my own femininity disgusting. This image, knitted together over time by questions and confirmations (Am I disgusting? Yes, you are), was one I was now prepared to sustain: I was poised to make the anorexic statement, to vanish, to let image and being finally become one.

But of course, no such thing occurs: there is no “letting”, no seamless transposition of the flesh. The anorexic body is held in the grip of will alone; its meaning is far from stable. What it says – notice me, feed me, mother me – is not what it means, for such attentions constitute an agonising test of that will, and also threaten to return the body to the dreaded “normality” it has been such ecstasy to escape.

For the first time since my teenage years I found myself tormented again by hunger: the monster had awoken from its slumber, bigger and more ferocious than ever. The route back to normality being blocked, I have had to devise other ways of getting there, or of seeming to. My occupational therapist acquaintance tells me that many of her patients are women of my age, women who have suddenly tried to slip the noose of their female flesh once its story – menstruation, lactation, childbirth – has been told in all its glory and shame.

When I relate this to my female friends they take it humorously, rolling their eyes and laughing, gallantly owning up – oh yes, they say, we know – to monsters of their own. Most of them haven’t delivered themselves into its jaws quite so thoroughly as I have; their dislike of their own bodies is a kind of low-level irritant, a necessary component of the female environment, but to think about it too much would spoil everyone’s fun.

I don’t want to spoil anyone’s fun, either, though for now I have spoiled my own. It did seem, for a while, as though the death-state of physical denial might contain the possibility of transcendence, the chance to step out of my self-disgust and make true contact at last: contact of my “real”, my second, self with the outer world. That I felt this had always been denied me, that in the negotiation between being and image all, for me, had been lost, was a stark kind of truth to face up to. Passing other women in the street these days, I seem to hear their bodies speaking. A lot of what they say is unclear to me, or at the very least so foreign that it takes me a moment to translate it. For instance: I accept myself. Or: respect me. The ones I like best are the ones that say, trust me. What I will never be able to hear unequivocally, whether whispered or shrieked, is: desire me. Notice me, feed me, mother me. Passing by the anorexic girl, stepping lightly and silently in the shadows, I hear her message and in a way I salute her for it. Other bodies have other messages, but for this one I have ears.

Rachel Cusk is most recently the author of “Aftermath: on Marriage and Separation” (Faber & Faber, £12.99)

This article first appeared in the 05 November 2012 issue of the New Statesman, What if Romney wins?

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The silver scent of fear

Learning to live with epilepsy.

I was swimming in the cool, still water of the lake. I was 12 and it was my second summer at sleep-away camp. New York City is roasting and humid in July and August and so, like many of my peers, I was lucky enough to be sent off to Maine for eight weeks. The trouble was, I didn’t feel lucky. I hated Camp Fernwood – but my mother had gone there, and I was a nice kid, and I didn’t want to let her down. So I spent a lot of time, during those beautiful summers, feeling very anxious.

One afternoon, a different sort of anxiety came over me as I paddled in Thompson Lake. The memory is crystal clear, or so I tell myself. I was not far from the wooden dock. I was on my own. In an instant – a long instant – everything changed. My body changed, for a start: my heart was pounding and my vision narrowed, as if I were staring down a tunnel. I was inside of myself, and outside of myself, in a way that I had never felt before; and in the back of my throat and up towards the bridge of my nose, there was what I will call an elusive silver scent, distant and clean.

The world became a globe of terror. I wasn’t scared. I wasn’t anxious. I knew what those things felt like, and this was something else. Now I was more frightened than I had ever been. I would learn to know that terror well; nothing would ever alleviate it. Familiarity did not bring peace. My brain was making terror. There would be no escape from that.

None of these words is adequate to describe what happened to me then. Nearly 40 years have passed and I have never found the words to capture the sensation of that first seizure – and every seizure since. That first time, I didn’t know I was having a seizure. I didn’t know the word “epilepsy”. I pulled myself out of the water, somehow getting to the dock and up on to dry land. I didn’t tell anyone, just then. Everyone knew me as a worried, pain-in-the-arse kid, anyhow. Why make things worse?

A few days later, I went to see the camp nurse and told her what had happened to me. (I loved going to the camp nurse. If you were in her little cabin, you didn’t have to play tennis or softball or sing camp songs.) That summer, the nurse had her husband with her, a doctor, who was taking his summer vacation by the lake shore in Maine. She called him into the room with us and he listened. Eventually I saw my own doctor. Not long after that, my mother and I sat in the office of a paediatric neurologist. He was the first person who said epilepsy to me.

It is only now, in retrospect, that I realise how lucky I was that my mother – who was even more anxious than I, in general – did not seem unduly alarmed. At 12, I had no idea that, for many with the condition and their families, epilepsy casts a dark shadow; that a diagnosis carries the legacy of the days when sufferers were not allowed to marry, or were confined to lunatic asylums.




In the United Kingdom, there are about half a million people with epilepsy, although the term can mean many ­different things. There are more than 40 different kinds of seizure and these can be divided into two broad groups: focal seizures (which are also called partial seizures) and generalised seizures. Figures vary, but roughly two-thirds of those with epilepsy have focal seizures and a third have generalised seizures. They are surges of electrical activity in the brain. The pioneering British neurologist John Hughlings Jackson, who died in 1911, put it succinctly: “Epilepsy is the name for occasional, sudden, excessive, rapid and local discharges of grey matter.”

My episodes involve simple focal seizures that happen in the temporal lobe of my brain. Generalised seizures affect the whole brain and cause a loss of consciousness – the muscles of the body may relax completely, or they may jerk and cause the person to convulse. The latter is perhaps the “classic” idea that most people have of epilepsy, and it is the image that has led to epileptics (a term that is disputed) facing discrimination, throughout history and in many cultures.

In the ancient world, it was sometimes known as the “sacred disease”, but as early as 400BC physicians began to believe that epilepsy might have an organic, rather than a divine, cause. Julius Caesar’s collapse in the heat of battle in 46BC has been attributed to a seizure (though it has recently been argued that he had a series of mini-strokes); Joan of Arc’s visions may have been the result of epilepsy; the visual and auditory hallucinations of Vincent Van Gogh might have been caused by the condition; Dostoevsky has been described as the best-known epileptic in history.

As Colin Grant writes in his fine new book about the condition, A Smell of Burning, people with epilepsy are often presented with a list of this sort, as if it offered encouragement: “Look at Van Gogh, look at Caesar, look at the abolitionist Harriet Tubman – they still got on with their lives.” But this can be cold comfort. Aside from the way in which epilepsy (especially generalised seizures) can limit a person’s life, there is still a great deal of stigma attached to the disease, even in the 21st century.

It is a stigma that Ley Sander has encountered often. Sander, a Brazilian who has lived in the UK for 30 years, is a professor of neurology and clinical epilepsy at University College London; he has been the medical director of the Epilepsy Society since 2012 and also leads the World Health Organisation Collaborating Centre for Research and Training in Neurosciences in London.

He is a charming man, with bright eyes and salt-and-pepper hair. His easy smile and mischievous sense of humour put both patients and journalists at ease – but he is serious when it comes to the treatment of epilepsy and the discrimination that his patients can face. Fellow physicians are often startled that he has chosen to specialise in the disorder. They assume that he must have a personal or familial connection to epilepsy. He does not.

“It’s still a hidden condition,” Sander says. “People don’t have a problem talking about Parkinson’s, or HIV, but epilepsy – not yet. That’s very common in all sorts of societies. It remains in the shadows. I have a number of eminent people who come to my clinic, from all walks of life, and as soon as you talk to them about ‘coming out’, or being a role model, they refuse to be involved.

“I had a situation not long ago, with one very eminent person. I thought I had persuaded this person to speak out. But within two or three hours of our conversation, I had his agent on the phone, saying he was going to sue me for breach of medical confidentiality. I had not done anything – we had only discussed it.”




We are sitting in Sander’s airy office at the Chalfont Centre in the village of Chalfont St Peter, Buckinghamshire. The centre, a complex of nondescript buildings ten minutes’ drive from Gerrards Cross, is much more remarkable than it initially looks, as I discovered when I first visited as a patient in the spring of 2015. After I was diagnosed with epilepsy at 12, I remained on medication until I was in my early twenties, but gradually weaned myself off the tablets when it became apparent that my seizures had disappeared. This is fairly common in juvenile epilepsy. Then, a couple of years ago, without warning, they returned, like a troublesome friend from my youth showing up on Facebook, certain that we’d want to be mates again.

The seizures seemed identical to what I had experienced when I was so much younger – the same, indescribable disorientation and terror. I wish I could better express the way they feel: like being shut out of one world and shoved into another, or like shooting down some kind of wormhole of consciousness.

For about 20 minutes after they occurred, I would lose language. The names of places or people I knew as well as my own, would vanish. In the aftermath, there came a kind of exhaustion that perhaps best resembled a hangover; my husband would tell me that I looked pale and drawn. Because I am a writer, I found the brief aphasia the most upsetting aspect. What if the words never came back? They always did, but that never diminished the fear.

Occasionally I had a seizure in public – while teaching, say, or doing an interview – and I would cover for my sudden silence, my sudden pallor, by saying as soon as I could that I was very tired, that I’d had a bad night, that I was sorry. It was a measure of friendship if I felt that I could tell someone what was going on. I would feel better if I could be touched, if I my hand could be held, if I could feel another’s physical presence. Worst of all and most fearful was to be alone, in an empty house. Were you scared when you saw The Shining? Right. Like that.

I looked for a trigger – did they come when I was particularly stressed? When I was especially relaxed? There was no pattern, at least not one I could discern.

My GP sent me to the National Hospital for Neurology and Neurosurgery in Queen Square, London. There I met Professor Sander and his colleagues – and perhaps, if I’m honest, I’d expected them to send me away with reassurances that my seizures were nothing to worry about. Was this because I didn’t wish to acknowledge that my epilepsy had returned? I suppose so, though I had never felt the stigma of the condition, at least consciously. (In 2007 I published a novel called Seizure, which I don’t think I would have done if I’d wanted to keep quiet about the whole business.)

Yet anything that affects the brain in the way that epilepsy does can’t be brushed aside. The doctors at Queen Square took my condition very seriously. I was put back on medication straight away and sent for two days of testing at the Sir William Gowers Centre, which is part of the Chalfont Centre. An NHS facility, it is run by a partnership between University College London Hospitals and the Epilepsy Society. I was affected by the level of care I saw there – from doctors, nurses, support staff. Many patients, more badly affected by epilepsy than I am, were there for many days or even weeks as their condition was monitored.

The unit has 26 beds and offers video-EEG telemetry (in which the electrical activity of the patient’s brain is monitored while he or she is being videoed), advanced MRI scanning, drug-level monitoring, neuro­psychiatry and psychology. Each year, it admits over 1,300 patients from all over the UK and Ireland for assessment and treatment. Although its low buildings are nothing special to look at, its comfortable sitting room opens out on to a beautiful view of the Icknield Way, an ancient pathway that runs from Buckinghamshire to Norfolk.

The centre is one of the world’s oldest facilities for the treatment of epilepsy. The National Society for the Employment of Epileptics (now the Epilepsy Society) was founded in London in 1892; its first task was to establish a “colony” where people with the condition could live and work, because this was a time when words such as “degenerate”, “idiot” and “lunatic” were used almost interchangeably with “epileptic”.

On the walls, there are black-and-white photographs of early-20th-century residents shoeing horses, ironing and playing golf or football. Back in those days, when the place was primarily residential, rather than diagnostic, there were as many as 450 people living there. Now there are just 90 permanent residents, Sander tells me. They must be severely affected by the disorder to qualify for admission.

But understanding the condition – even in the 21st century, when it seems that medicine is so advanced – is extremely difficult. Sander, one of the leading experts in the field, confesses that offering treatment too often feels like firing “a blunderbuss”. Drugs are designed to work for a wide variety of conditions; as he tells me, drug companies want a product that works as broadly as possible, because that will bring in the most income. If you have to develop drugs that are designed for a small number of patients, that’s very expensive.

Furthermore, the causes of epilepsy – like so much else about the workings of the brain – are still little understood. Seizures happen when there is a sudden interruption in how the brain normally works but what provokes this is often a mystery, unless fits are brought on by brain injury or a tumour. Epilepsy may be hereditary but this, too, can be hard to discern, as the condition was often kept secret in families.

“I myself feel like a shaman at times,” Sander says, “because you are working in the dark and you hope that what you do will work. Dear Mary, I say, or dear John, I know you have this seizure type; we’ll try this drug and it may work. We don’t know why, if it does; and in the best-case scenario I can offer a 50 per cent chance that it will work. So I could say that even if I tried herbal tea with that person, I might get the same outcome.”

Sander told me that he didn’t expect to see or find anything in the tests I had at Chalfont: a 24-hour EEG, an MRI scan, memory and psychological tests. But, he said, at least if something about my condition changed for the worse in the future, we would have a baseline from which to work.




Even when drug treatment is successful, there can be problems. Colin Grant’s book is not only a history of epilepsy and the way it has been perceived and treated across cultures and centuries; it is also the story of his younger brother Christopher, who died as a result of epilepsy nearly a decade ago. A Smell of Burning paints a portrait of Christopher as a vivid and original young man who resisted treatment for his condition because the drugs he was given left him, as neurologists say, “knocked off”: dulled, sedated, his sense of self disrupted.

“Many people I spoke to said they would rather risk the occasional fit, or seizure, and be fully, 100 per cent alive and articulate than have a life that was – well, living at only 80 per cent,” Grant tells me when we meet. “I think that’s a very human response. But with Christopher, it drove his doctors and my siblings and my parents mad. They couldn’t understand it.”

It is Sander’s hope that the blunderbuss approach that Christopher resisted will change in the next decade or so. “It’s very important to put epilepsy in context,” he says. “Epilepsy is not a disease on its own. It’s a symptom, really a complex of symptoms. So in the old days, for instance, anaemia was a symptom complex” – that is, the aggregate of signs associated with the whole picture of a disease – “[but] it’s now just a symptom. We wouldn’t assess someone saying, ‘We’re going to find out why you have anaemia.’ We want to know what the anaemia is a symptom of, and then have a treatment for the cause. We have not reached that stage with epilepsy. Things will change in the next five or ten years, with progress in genomics – and then we’ll have a much better diagnosis.”

Yet even today, without such developments, when it comes to finding out the causes of epilepsy and how it might best be treated, the Sir William Gowers Centre offers a high level of sophistication. Magnetic resonance imaging (MRI) uses strong magnetic fields and radio waves to produce detailed images of the inside of the body; many hospitals have this technology but, as Sander explains, imaging departments may have to do heads, fingers and livers, all in a day. “So you might not be able to do the most protocols for imaging as you can do in a place that specialises. Our scanner is set up to do epilepsy only. A good analogy is with an orange: if you slice an orange in two planes, you’re likely to miss a seed, especially if you do your slices 5mm apart. But if you do a scan in several planes, and you do it to half a millimetre, you’ll find the seed.”

Some forms of epilepsy can be treated with surgery and the Chalfont Centre is the main facility in the UK for those who undergo these procedures. Sander sounds a note of caution. “Many patients, when they arrive, have spoken to Dr Google, and so they hear that this treatment is out there. But often [they have] very unrealistic [expectations]. More often than not, I have to tell them, ‘Sorry, you are not a candidate for this.’ Or someone is a good candidate, but they’re afraid.”

The neurosurgeon Henry Marsh echoes Sander’s sentiments. There is “no reliable data” on the percentage of patients who are suitable for such surgery, “partly because it is a question of judgement as to when epilepsy is judged ‘refractory’ – ie, not responding adequately to drug treatment –and also how early on you should consider surgery in such cases. Probably fewer than 5 per cent of people with epilepsy will be considered for surgical treatment,” he says.

Deciding to operate – as Marsh writes in his memoir, Do No Harm – is always a hugely complex, if not the most complex, part of the process. To come to such a decision, “You need an epilepsy neurologist, a neurosurgeon, a psychologist, a neurophysiologist and a neuro-radiologist. You need to find where the epilepsy is coming from. It is not always coming from an abnormality seen on the brain scan. You may need to insert electrodes into the brain, or on to the surface of the brain, to try to trace where the fit starts. You then need to decide whether it is safe to remove that part of the brain.”

Colin Grant observes this caution directly when, in the course of researching A Smell of Burning, he attends a review meeting at Queen Square of the kind that Marsh describes. Six cases are discussed; none is put forward for surgery. The team, he writes, “had erred on the side of ‘bad brain is better than no brain’”.

For the rest, such as myself, there is the prospect of a lifetime on anti-epileptic drugs. This works for about 70 per cent of patients, according to the Epilepsy Society. I am fortunate that my treatment has been successful and smooth. My seizures have stopped completely and I can sense – I don’t quite know how – that I won’t have one. I realised that, after my seizures returned (and before I went back on medication), they were always in the offing, even if I wasn’t having one. This is hard to explain, but now that I’m on medication, I just know the seizures aren’t “there”. I now see Professor Sander as a patient only once a year.

There are, however, complications to treating epilepsy other than the problems of non-compliance and the risks of surgery. Cultural attitudes to the condition vary widely and, as both Grant and Sander relate, even today there are many people who believe that epilepsy is a result of spirit possession or a curse. Grant’s family members were devout churchgoers and belonged to a Pentecostal congregation. When Christopher was 19 he had a seizure one Sunday morning. Grant writes that he arrived at church to find the congregation “weeping and wailing whilst the two elders called upon God to free Christopher from the devil’s grip”.

This is a situation that Sander confronts more often than you might think. He tells me the story of a young man who works in the City. “He has epilepsy, and he’s my patient. It was very difficult to convince him about drugs until I found out I could say, ‘Well, this drug – djinns don’t like it.’ He comes from an Asian background and his aunties [and] his mother would say, ‘This a djinn,’ when he had a seizure. So I promised him that the djinns don’t like this drug. And he came back and said: ‘You were right.’ But one of my registrars at the time argued that this was unethical, to engage with this belief. I said to the registrar that I’m only with the patient for 15 or 20 minutes. He will go back to his mother, his aunties; they will carry on talking for the next six months about the djinns. So I don’t stand a chance unless I do, too.”

Grant says almost exactly the same thing to me about his own mother. “My way of thinking would jar with her. She has a way of understanding that’s developed over many, many years. You can’t disabuse someone of that overnight.”




I understand the resistance to the term “epileptic”. It implies that the condition is definitive; that the whole person – my whole person – is folded ­inside the experience of seizure. Those with the condition have fought hard, over centuries, over millennia and into the present day, to live ordinary lives, to hold down jobs, to marry, to have children.

Yet I accept the term, too. I know that I would not choose to be without it. Certainly, I would not be who I am, who I consider myself to be, without it. I think it was what made me a writer: not only because I have tried and failed, over and over again, to describe what is going on inside my skull when I have a seizure, but also because I feel it has given me a profound understanding of the subjective nature of consciousness.

Confronted with the great difficulty that so many with epilepsy face, I know this seems like speaking my privilege, as the saying goes. Yet this is the truth of my experience. Maybe, I find myself thinking, it is the truest thing about me.

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Erica Wagner is a New Statesman contributing writer and a judge of the 2014 Man Booker Prize. A former literary editor of the Times, her books include Ariel's Gift: Ted Hughes, Sylvia Plath and the Story of “Birthday Letters” and Seizure.

This article first appeared in the 29 September 2016 issue of the New Statesman, May’s new Tories