The Story of Epilepsy

Here’s my latest from the Literary Review:

 

A Smell of Burning:

The story of epilepsy

Colin Grant; Cape

 

Colin Grant begins his story of epilepsy by explaining that he was drawn to write about the subject because of his brother, an epilepsy sufferer. As it happens, Grant is also a trained doctor, as well as being a writer and broadcaster, so he brings a core of expert knowledge and a perhaps even greater degree of skill as a communicator to the story, as well as his special interest. I cannot claim any medical skill, but I also have a special interest, since I too have a family member who suffers from epilepsy. But you don’t need any special connection to appreciate the absorbing and sometimes horrifying story he has to tell.

The horror comes from the grim treatment meted out to epileptics in the past – and not always the distant past. Grant tells the story more or less chronologically, interleaving it with episodes from his brother’s life, and focusing on different aspects of “treatment”, if that is not too polite a term for some of the techniques described here. The result is curiously contrapuntal. The broad story is one of things slowly getting better; the personal story is one of things slowly getting worse. This is so clearly telegraphed from early on the book that no spoiler alert is really needed if I tell you that it does not have a happy ending. Equally clearly, writing the book represented a catharsis for the author. All of which lifts it above the level of the kind of professional history of the subject that might have been written by an author with equal skill but no personal involvement.

It is the recent history that is the most startling aspect of the story. We can hardly blame the Ancient Greeks or Romans for having a superstitious attitude to seizures. But 22-year-old Graham Greene seriously contemplated suicide when told of the diagnosis in 1926, and the story is now well-known that the youngest son of King George V, Prince John, was hidden away in the country because of the “stigma”. Right up until 1970 in the United Kingdom a marriage could be declared void “if either party was, at the time of marriage, of unsound mind, mentally defective, or subject to recurrent fits of insanity or epilepsy.” It was three years after the UK decriminalised homosexual acts in private between two men that epilepsy was removed from this list. In some countries, the law is less enlightened, even today. Until 2010, the official Chinese term for epilepsy translated as “crazy seizure disorder”; only then was it changed to “brain seizure disorder”. And as a cricket lover and fan of Test Match Special, I did not need Grant to remind me of Henry Blofeld’s disgraceful assertion that Tony Greig’s “defection” to Kerry Packer’s World Series Cricket was because “he’s an epileptic and that may be one reason why he’s made this ridiculous decision”.

But I confess that I had not previously made the connection between the storyline of the Powell and Pressburger film, A Matter of Life and Death and epilepsy. Obvious, once it is pointed out! And the film partly gives Grant the title of his book – the main character, played by David Niven, is tantalised by the smell of fried onions, an example of what the experts call “auras”, sensory precursors to seizures. But the title also has a personal resonance for the author. On one occasion, Grant’s brother said “Can you smell burning?” immediately before he “crashed into a fit”.

Along with the broader history, the usual roll-call of famous epileptics make an appearance in A Smell of Burning – including Julius Caesar, Joan of Arc, Fyodor Dostoevsky, Vladimir Lenin, Edward Lear, Vincent Van Gogh, and Neil Young. This begs the (unanswered) question whether sufferers from epilepsy are more likely to be creative (in the broadest sense of the term), or whether inevitably just like the general population some epilepsy sufferers are creative and some are not. But Grant highlights an interesting point. Perhaps the threat of seizures encourages some people to make the most of things in between them. Van Gogh, for example, wrote that “it drives me to work and to seriousness, as a coal-miner who is always in danger makes haste in what he does.”

The danger today is greatly reduced by the development, since the 1930s and ongoing, of anti-epileptic drugs. The downside, for some people, is that these take the edge off alertness and intelligence. Grant quotes one person who accepts the situation and has been free from seizures for two decades, but says when you wake up in the morning “the first thing you’ve got to do is push your way through that thickness of cotton wool to get to where you can operate but actually that bit there [the sharpness] that’s gone.” Others, including Neil Young, don’t take the medication and live with the consequences. Grant’s brother, Christopher, was one of those. A few hundred of those people each year, including Christopher in 2008, die from a condition that is rare, but not rare enough to avoid having its own acronym – SUDEP, for sudden unexpected death in epilepsy. A powerful reason to keep taking the medicine.

 

 

 

 

 

John Gribbin is a Visiting Fellow in astronomy at the University of Sussex and co-author of Being Human

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s