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.
For more information about the condition, visit: epilepsysociety.org.uk