A Pound a Glimpse
- A Smell of Burning: The Story of Epilepsy by Colin Grant
Cape, 242 pp, £16.99, August 2016, ISBN 978 0 224 10182 0
- The End of Epilepsy? A History of the Modern Era of Epilepsy, 1860-2010 by Dieter Schmidt and Simon Shorvon
Oxford, 208 pp, £39.99, September 2016, ISBN 978 0 19 872590 9
In 1926, Graham Greene received a diagnosis of epilepsy. In all likelihood, he didn’t have the disorder. His only symptoms were three isolated episodes of lost consciousness: once in the school chapel at Berkhamsted; once in the London home of his psychoanalyst; and once in the offices of the Times, where he was working as an assistant editor. But the neurologist he consulted thought these episodes were sufficient grounds for the diagnosis, and the news nearly led Greene to throw himself in front of a speeding tube train. He was 22 years old and engaged to be married. He’d written two unpublished novels. The diagnosis threatened to upend all of his cherished plans for the future, not least his plans for a family: his analyst had told him (not quite accurately) that epilepsy could be inherited. But what unnerved Greene was something less rational. He seems to have felt that he had been prematurely and indelibly marked. Epilepsy wasn’t just a difficult chronic condition, like migraines or gout. Nor was it something dishonourable he could at least blame on his own behaviour, like syphilis. It was an affliction, an awesome, inexplicable curse. As he wrote decades later in A Sort of Life, the first volume of his autobiography, ‘epilepsy, cancer and leprosy – these are the three medical terms which rouse the greatest fear in the untutored and at 22 one is unprepared for so final a judgment.’
Epilepsy, cancer and leprosy. Who, in 2017, would think to group these conditions together, let alone declare them the most fearsome trio in the medical pantheon? Of the three, only leprosy retains any aura of external judgment, and that aura is both anachronistic, a hangover from the medieval period, and obsolete: in the West, leprosy has been all but eradicated. Cancer, of course, is still a scourge, but it is hardly monolithic and, given modern radiation, chemotherapy and surgery, not to mention advances in genetics, not necessarily ‘final’. As for epilepsy – who thinks of it much at all any more? Who now considers it to be a life-shattering sentence? What young person today, on receiving a diagnosis of epilepsy, would say to himself, as Greene did: ‘This is it. This is the end of the line for me’?
But in 1926, Greene’s despair made perfect sense. The medical historian Owsei Temkin has shown, in his monumental book The Falling Sickness (1945), that, socially speaking, there has never been a good time to have epilepsy. To the Greeks and Romans, Temkin writes, the epileptic was ‘an object of horror and disgust’. An epileptic fit was a terrifying omen, a sign of the gods’ displeasure, and a common response to witnessing one was to spit, to avoid contamination. In Europe, from the beginning of the Christian era up to the Renaissance, the condition was usually considered a sign of demonic possession, black magic or witchcraft. At best, it was evidence of a wicked character. (Kent to Oswald in King Lear: ‘A plague upon your epileptic visage!’)
But there has probably never been a worse time in history to have epilepsy than the century beginning around 1850. At that time, a noxious stew of pseudoscientific, Social Darwinist ideas linked the condition to a whole range of undesirable and ignominious traits: idiocy, madness, sexual deviancy, immorality, criminality. Two of the most common beliefs about epilepsy throughout the period – beliefs held by both doctors and non-doctors – were that observing an epileptic seizure could cause one, and that masturbation caused epilepsy by weakening the nervous system. By the start of the 20th century, most of the epileptics who had previously been confined in asylums had been removed from them and segregated – not to improve their treatment but to protect ordinary lunatics from becoming infected. Consequently, epileptics began to hide themselves from public view, or else, as in the case of Prince John, the epileptic fifth son of George V, they were hidden away by their families.
The rise of eugenics made things much worse. Eugenicists fixated on epilepsy as a hereditary threat to be tackled by both negative and positive countermeasures. By 1914, 13 US states had barred people with epilepsy from marrying. In 1927, a year after Greene had stood on an underground platform contemplating suicide, the US Supreme Court in Buck v. Bell ruled in favour of the forced sterilisation of ‘mental defectives’, including epileptics. ‘It is better for all the world,’ Justice Oliver Wendell Holmes Jr wrote, ‘if instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind.’ Over the next thirty years, as many as 50,000 men and women with epilepsy were sterilised in the US. Under the Action T4 programme in Nazi Germany (where officials had noted Buck v. Bell with approval), thousands were simply murdered.
These are not just disturbing facts. They are disturbing facts that lie in uncomfortable proximity to our own time. Nowhere else in medicine or psychiatry do we find a stigma as ancient, persistent and ultimately florid as that which has dogged epilepsy. Any worthwhile account of epilepsy must therefore ask not only what caused the condition to be reviled but what has become of that revulsion. Are we really so enlightened now? Has the stigma that reigned only decades ago disappeared, or has it merely become less visible, less garish?
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