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Jemima Khan meets Nick Clegg: “I’m not a punchbag – I have feelings”

The NS guest editor Jemima Khan talks to the Liberal Democrat leader about life on the far side of power and what it’s like to be a cut-out.

Nick Clegg and I smile genially at each other across the table of a standard-class train carriage. He is on his way to his constituency in Sheffield to talk about manufacturing. Pale-faced, pale-eyed and so tired he appears taxidermied, he looks like he could do with a holiday, except he's just had one – skiing in Davos with his children as the Libyan crisis escalated (for which he was lambasted).

Nick Clegg is the Tim Henman of politics: a decent man for whom Cleggmania represented the peak of his career, his Henman Hill moment. Then he became the Deputy Prime Minister and, shortly after, an effigy.

The carefree, cloud-cuckoo days of opposition, when he had a platform and little criticism, are long gone. At last year's Liberal Democrat spring conference, a fresh-looking and ebullient Clegg had gesticulated and boomed: "We see the same old broken promises. No wonder people feel let down." A year on, he was less combative, more ambivalent. His many critics pointed to his own broken promises and let-down voters.

Clegg concedes that it has been a "very sharp transition". "Of course it has had a dramatic effect on how I'm perceived, the kind of dilemmas I have to face," he says. "I don't even pretend we can occupy the Lib Dem holier-than-thou, hands-entirely-clean-and-entirely-empty-type stance. No, we are getting our hands dirty, and inevitably and totally understandably we are being accused of being just like any other politicians."

His point – and it seems a fair one – is that the British public voted, no one party won and that coalition government, by definition, is a compromise. "A whole lot of things are happening that would just never in a month of Sundays have happened without the Lib Dems there," he says. The morning of our meeting, he claims to have "squeezed out of [George] Osborne" a promise of a green investment bank, not simply a fund. "We've done more on liberty and privacy," he adds, "in the past ten months than Labour did in the past 13 years."

All this has done little to dilute the vitriol of his opponents. John Prescott has likened him to Jedward, the risible and tuneless twins from The X Factor. Ed Miliband has called him "a tragic figure", one too toxic to share a platform with ahead of the referendum on the Alternative Vote. Clegg insists that none of this bothers him. "I see it exactly for what it is. [Ed] is a perfectly nice guy but he has a problem, which is that he's not in control of his own party, so he constantly has to keep his troops happy and he thinks that ranting and raving at me is the way to do it."

Since joining the government, and in particular since his U-turn on university tuition fees, Clegg has had dog mess posted through his door and been spat at in the street. It must upset him. "No, well look, I'm a human being, I'm not a punchbag – I've of course got feelings."

He pauses. "Actually, the curious thing is that the more you become a subject of admiration or loathing, the more you're examined under a microscope, the distance seems to open up between who you really are and the portrayals that people impose on you . . . I increasingly see these images of me, cardboard cut-outs that get ever more outlandish . . . One thing I've very quickly learned is that if you wake up every morning worrying about what's in the press, you would go completely and utterly potty."

After ten months in government, he has a guardedness that did not exist in the days when he told Piers Morgan he'd had roughly 30 lovers. These days he is tightly managed. I have already had a pre-interview briefing with one adviser, and now Clegg's version of Andy Coulson, who is sitting to his right, is busy taking written notes of our interview, as well as recording it. When Clegg gets sidetracked, he prompts him, head down, pen poised over notebook, deadpan: "You were talking about what you've achieved . . ."

Everyone seems painfully aware that my task as interviewer is to catch him out, to get him to say the wrong thing. Clegg's task, like all politicians, is to rattle off rhetoric, to be evasive and as uncontroversial as possible, and to fill up the tape with unquotable patter.

All of which makes interviewing him excruciating. He continues: "What we've achieved so far . . . I think just having a government with two parties in it is already such a big new thing. I know it has been born in a blaze of controversy because of the difficult economic decisions we've had to take . . . but if we're lucky, people will look back on it in 20 or 30 years' time as quite a normal thing in British politics that politicians can actually agree with each other from time to time.

“That in itself is quite big and radical. In the week or two leading up to the general election, every single newspaper was screaming from the headlines: 'A hung parliament will be a disaster, coalition politics will be a disaster. Nothing will get done.' And the extraordinary thing is that now we're being accused of almost exactly the reverse – of doing too much."

Of doing too much? Or of being too Tory? Clegg's dilemma is that, on the one hand, he is in danger of being seen as too close to David Cameron and the Conservatives, and losing credibility with his party and voters. On the other hand, he can't be too distant, because that would be damaging for the coalition and a gift for the opposition and the press, which is constantly looking for rifts.

Before the election, Clegg let it be known that he had turned down an invitation to dine with the Camerons at their home in Notting Hill. He wanted to maintain a distance. Perhaps wary of looking like he fits too easily into the port-swilling, waistcoat-wearing Bullingdon Club set, he is still keen to present Cameron as more working partner than friend.

“We don't regard each other as mates and actually I don't think it would be a particularly healthy thing if we tried to become personal mates," he says. "I don't think a coalition works unless you have a very careful balance between mutual respect and civility and also a certain hardness, as at the end of the day you are representing different views."

I've heard that they play tennis together. "No, no – well, er, I think we've played one game of tennis. Of course we meet from time to time but it's always basically to talk about what we're doing in government."

Who won?

“Ah no, that's a state secret," he jokes. (Cameron won.)

Earlier, at my pre-interview briefing, Clegg's adviser Richard Reeves, the former head of Demos, characterised being in the coalition as like being in a marriage – you both get to know instinctively which are the no-go areas.

Clegg concedes that there are "some areas where we flatly disagree" with the Tories, such as on Europe ("I think you can't make sense of this world unless you work together with other folk in the European neighbourhood") and taxation ("Our reflexes as Lib Dems are to try to give tax breaks to people on middle or lower incomes, whereas traditionally they are more interested in trickle-down economics"), but denies that there are "no-go areas". "Look, we're on completely opposite sides of the fence on the AV referendum."

He refuses to concede that signing the pledge to vote against an increase in university tuition fees before the election was a mistake. "That would be a cop-out. I did it. And I have a rather old-fashioned belief that you've got to stand by what you've done and take the consequences, good or bad." He insists that it was not one of his main manifesto priorities anyway. "I didn't even spend that much time campaigning on tuition fees."

Instead, he says, he spent "every single day and every single interview talking about the four things that were on the front page of the manifesto – namely the pupil premium, two and a half million quid for disadvantaged kids; changing the tax system, so you don't pay tax on your first £10,000; political reform; and sorting out the banks and rebalancing the economy."

That's all very well, but given that the Lib Dems are only ever likely to be in government as part of a coalition, how will he deal with pledges made in future election campaigns? Will there be pledges with caveats, depending on which party he clambers into bed with next? "I think that we need to be clearer about what are the really big, big priorities."

After his capitulation on tuition fees, there are many who now fear that nothing is sacred for the Lib Dems. He denies this. "If the Conservatives wanted to become as authoritarian as Blair and New Labour, I wouldn't have it – but it wouldn't happen, as it couldn't happen with us in [the coalition]."

Clegg is emphatic that he will not allow the Tories to disempower the Lib Dems' much-loved European Court of Human Rights. The problem with being in a coalition government is that it acts as a gag. There are times in the interview when Clegg looks so pained as to remind me of Colin Firth in the opening scenes of The King's Speech, particularly when issues of Rupert Murdoch and phone-hacking come up. I know what he'd have said if he were in opposition. The Lib Dems were always very critical of the Cameron-Murdoch cabal. Some Lib Dem MPs were victims of phone-hacking by the News of the World.

“My thoughts are," he begins haltingly, "that it has all come out much more into the open since the police investigation . . . and I think, you know, since those days it is becoming much more out there, and quite rightly. I've always said that the police have got to investigate and the CPS [Crown Prosecution Service] have got to take action. Look, I don't follow every twist and turn . . ." His press secretary looks up for the first time.

What of those, such as the Labour MPs Chris Bryant and Tom Watson, who believe that the Murdochs have too much power and influence over politicians? There's a long pause. "I think that the days when newspaper barons could basically click their fingers and governments would snap to attention have gone," he says.

Clegg is exceptionally loyal to David Cameron – I expect he is a loyal man by nature, not design – but there's a fine line between being loyal and sounding plain disingenuous. So, what does he think of the dinner party hosted over Christmas by News International's chief executive, Rebekah Brooks, at her Cotswolds home, attended by the Camerons and James Murdoch?

“I don't know anything about Oxfordshire dinner parties," he says. Of course he does. Everyone in politics knows about the get-together of Brooks, Cameron and Rupert Murdoch's son, and most agree that the timing of it was inappropriate, given that there was a criminal investigation under way over phone-hacking in the Murdoch empire, as well as ongoing negotiations with the regulatory authorities over the ownership of BSkyB.

“Well, I'm assuming that they weren't sitting there talking about News International issues," says Clegg. "Look, you're putting me in a very awkward spot. If you've got an issue with it, speak to Dave. I don't hang out in Oxfordshire at dinner parties. It's not my world. It's never going to be my world."

He looks pained. I feel sorry for him and I can't help telling him so. I was married to a politician and I remember the constant self-censorship and, in my case, the gaffes. I get the impression that Nick Clegg is an honest, straightforward man in a dishonest, unstraightforward world, in which nobody can say what they really think.

An interruption offers some blessed relief. A beaming middle-aged woman who has spotted Clegg on the train passes a note to his aide. It reads: "I couldn't resist such a unique opportunity to say, 'Stick With It!' The vast majority of us think the coalition are doing the right thing. We know it's tough but it's very necessary. All the best."

The press secretary looks triumphant. Clegg looks momentarily less beleaguered. He thanks the woman graciously and just as I am wondering if it was a set-up, Clegg jokes that it was. He often gets support from the public, he says, but the difference is that these days people whisper their congratulations, "as if it's a guilty secret saying anything nice about Nick Clegg". He should watch those slips into the third person – an early sign that a person is losing touch with reality.

Clegg was a strong opponent of the war in Iraq and for that he earned many supporters. His backing of the "surge" and British forces' continued presence in Afghan­istan is therefore surprising. There are rumours, which he denies, that he wanted to call for an immediate withdrawal of troops but that the former Lib Dem leader Paddy Ashdown, an ex-marine, persuaded him not to.

“In a sense," Clegg says, "we have brought our ambition to a much more realistic level. We've now got an exit date, which we didn't have before, and a much better set of weapons on the ground. And crucially you've got the British government saying to [President Hamid] Karzai – who I had dinner with recently – this cannot be won militarily. Once you're in that far and you've had that many people die and be maimed, I think it would be morally questionable to cut and run overnight."

It is hard to avoid the conclusion that the real reason we continue to pour money into a war with no clear goals – and continue to line the roads of Wootton Bassett – is so that those in power will be able to keep on claiming that "they did not die in vain".

“Look, it's never perfect. It's not a neat world," says Clegg. He is above all a pragmatist for whom coalition, foreign policy and life are a balancing act. He accepts that there are moral problems with supporting Karzai's government, which has no authority outside the Afghan capital, Kabul, and which, according to the Transparency International corruption index, was last year the second most corrupt in the world. "Exactly – that's where it gets messy and imperfect."

Clegg is pleased to have "got more balance into the debate on Israel in the party". While he is "undimmed" in his criticism of Israel's illegal settlement activity and his "absolute horror of what is a humanitarian catastrophe in Gaza", he stresses that "Israel has legitimate security issues in a region where there is a threat to its existence".

He denies that there is a fundamental incompatibility between the west's rhetoric about democracy and our need for oil. "Do we have vital economic self-interest to keep lights on? Yes. Do I think that should be won at the cost of always being on the side of people who want to express themselves and want democracy? No."

He refuses to be drawn on whether he thinks it was bad timing for Cameron to tour the Middle East on a "UK trade mission"- a euphemism for peddling arms to despots – at a time when there are widespread protests in favour of democracy in the region. He will say, though, that the business of selling arms represents "a horrendous dilemma".

That we have sold arms to repressive regimes – tear gas grenades to Bahrain, armoured personnel carriers to Saudi Arabia, crowd-control ammunition to Libya – is "of course wrong", he agrees. "That's why we've suspended scores and scores of export licences. What guarantee do you have when you export product X to country Y, who seem totally hunky-dory, totally peaceful, and what happens when the country goes belly up? What we're doing is pragmatic rather than pure."

Even the language Clegg uses is moderate and qualified, interspersed with phrases such as "kind of" and "on the other hand" as well as rhetorical questions and unfinished sentences. He's unhyperbolic and ambiguous in a way that must be alien to most Tories. Whereas Cameron strikes me as a man with almost no self-doubt, Clegg seems more self-questioning and less bombastic. I suspect that he is as accom­modating and good at compromise in his marriage as he has been politically.

He smiles for the first time when he tells me that his Spanish wife, Miriam, has "got wonderfully strong opinions". It's clear for a start who chose the names for their three children, Antonio, Alberto and Miguel Clegg. They are being brought up as Roman Catholics, even though Clegg has said he is an atheist. The children are bilingual, speaking both Spanish and English fluently.

At one point, it was assumed that Miriam would be the one with the big career and he would be the thinker and take care of their children. After his eldest son was born, Clegg says: "Miriam was in a particularly intense period of her career and I was in a particularly relaxed period of mine . . . coming to the end of my time as an MEP, so I was very, very involved. I wasn't the primary parent – Miriam would get very annoyed if she were to read that – but I was very involved and you carry that on with you."

He has successfully managed to keep his family out of the spotlight, "to create a firewall" between his world and theirs, although he worries constantly that "what I am doing in my work impacts on them emotionally, because my nine-year-old is starting to sense things and I'm having to explain things. Like he asks, 'Why are the students angry with you, Papa?'"

Clegg refuses "to play politics" with his children, or to say whether or not they will go to a private school. While he's not "ideologically opposed to fee-paying schools existing", he is offended by the notion that it would be his decision alone, rather than one he would reach with Miriam. "I go: hang on a minute – what century are we living in?"

The same applies to what he might do in the future. He certainly does not want to be in politics all his life. "I think that's deeply unhealthy. I look at those people that got into politics when they were 16 and are still at it in their late sixties and think, 'My heavens above!'" Judging by the most recent opinion polls, he may not have the luxury of choice. Either way, he says, Miriam has made "masses of sacrifices putting up with me and politics" and this will be something they decide on together. He'd like to think, though, that he would go into education.

He is besotted by his "three lovely boys" and is most proud "by a long shot" of the family life he has created with Miriam. They manage to lead a relatively normal life, "not in a bunker in Westminster", and he tries to pick his children up from school and put them to bed at night at least two or three times a week.

He regrets that sometimes he doesn't always get the balance right, which makes him "quite miserable" and unable to do his job properly.Sometimes he has to tell them white lies if he is stuck in a meeting. At home, in the evenings, he likes to read novels and says he "cries regularly to music."

I receive a snapshot of his family life when, after the interview is over, I am invited to dine with other journalists at Chevening, the grace- and-favour house in Kent that Clegg shares with William Hague. Clegg arrives two hours late – he's been in protracted discussions over Libya – and looks corpse-like with exhaustion. The contrast with his vibrant, pretty wife, with her big bawdy laugh, could not be more stark. His children seem delightful – and delightfully normal.

Clegg has been accused of selling out, of providing a yellow fig leaf for the Tories' less attractive bits. But I expect that he would see opting out of the coalition or leaving politics altogether as the biggest cop-out of all. He is not consumed by politics – he has a fulfilling life away from Westminster – but he seems to have an old-fashioned sense of duty and believes that, without him there in the cabinet, the Tories would be up to far more of their old tricks. He might well be right – but will he be so easily forgiven by the voters?

“I have a faintly romantic belief that if over five years I just keep steadily trying to do the best I can, with all the difficult dilemmas we face, with not very much money, all those kinds of things . . . we will kind of come through. I think if people see that someone is trying to do the right thing and maybe they're not entirely succeeding, they kind of will go with you. And that's all you can do."

He suddenly looks very, very sad. A week later I glimpse him on television, on the front bench on Budget Day. Cameron sits to his left, looking ruddy and shiny, straight off the playing fields, ready for an interminable life of "Yeah, yeah, yeah" in the Commons. Clegg, by contrast, looks like he's in black and white – lost and out of place.

Later that evening, I get a text from his press secretary, offering me "a full copy of the note that lady passed on the train". He thought I might like it for my piece, "in case it needs some colour".

Jemima Khan is associate editor of the New Statesman

This article first appeared in the 11 April 2011 issue of the New Statesman, Jemima Khan guest edit

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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