A smell of burning: the story of epilepsy
Epilepsy Society content manager Nicola Swanborough reviews Colin Grant's new book, A smell of burning: the story of epilepsy and discusses why the book's most important message could be 'we need to talk.'
BBC producer Colin Grant makes no bones about the reasons for writing his new book A smell of burning: the story of epilepsy. He wanted to resurrect his brother and best friend, Christopher.
Speaking during the launch of his book at Epilepsy Society, Colin talked movingly about how he wanted to revisit and relive the closeness, conversation and camaraderie that he and Christopher had enjoyed. Christopher died in 2008. The coroner's report said 'SUDEP' - Sudden Unexpected Death in Epilepsy. It was the first time Colin had ever heard the word.
It is a timeline we hear all too often at Epilepsy Society. Parents aren't told about the risk of SUDEP because their teenager may not come into a high risk category. SUDEP is thought to be more likely in people who experience frequent convulsive seizures. Young men are generally thought to be at a greater risk. Parents and loved ones only learn about SUDEP when it's too late.
Colin was being interviewed at the book launch by author, critic and New Statesman journalist Erica Wagner who herself has epilepsy. She was diagnosed at the age of 12. Turning the tables on Erica, Colin asked her 'when did you first learn about SUDEP?' 'When I read your book' she replied.
The audience, including many medical staff, gasped.
It was a sobering moment. Here at Epilepsy Society, a centre of excellence for epilepsy, SUDEP is a research priority. We are working to understand why SUDEP happens, what the markers are that may indicate a person is at risk, and how those risks can be managed. Alongside this our clinical lead, Dr Fergus Rugg-Gunn, champions the 'educate to protect' approach to informing people about SUDEP.
'Every patient has the right to know the full consequences of their illness' he said at our recent conference. 'The potential risk should be disclosed in the context of comprehensive education.'
Writing in The Telegraph, Colin said he wished his brother had known about Epilepsy Society.
He was aware that Christopher did not always take his medication as prescribed, preferring to run the risk of a seizure rather than endure the cognitive fog that was a side effect of his epilepsy drugs. Colin wished Christopher had been aware of the risks around not taking his medication. It may not have made a difference, he said, but it would have given him informed options.
Colin structures A smell of burning around the stations of the cross. Christopher's story is told chronologically from first seizure to last. Interwoven around his via dolorosa is the story of epilepsy, the enemy at the door for most of Christopher's life.
Colin and Christopher had a code word for epilepsy. Whenever Christopher came round from a seizure, Colin would tell him 'You've had a visitor.' Christopher would reply 'Oh, a gentleman caller - any message?'
A smell of burning confronts that visitor. Colin's research is thorough and enlightening. The role that epilepsy has played in people's lives throughout history, both as driver and destroyer, is painstakingly documented. The throwaway list of famous people that we often trot out as epilepsy's hall of fame, is given credence and clarity.
But does Colin resurrect Christopher and the wonderful conversations that were an essential ingredient of their fraternal chemistry? I think he resurrects the most critical conversation of all, that question as Christopher emerged from the claws of a seizure: 'Any message?'
A smell of burning is in itself a message, the legacy of Christopher's truncated life and the affirmation that conversation, communication and knowledge could be a life saving medication.
Statistics show that 15-19 year olds experience almost double the risk of death from road traffic accidents, compared with the general population. For males in this group the risk is higher still.
We all wear seat belts when we are out driving. It won't stop an accident but it will increase our chances of survival. Nobody would ever suggest that only those in the high risk category belt up.
SUDEP must be discussed in a timely and sensitive manner so as to modify risks and put in place appropriate support. 'Any message?' yes, we need to talk.
Read the book
A smell of burning: the story of epilepsy by Colin Grant is published by Jonathan Cape. RRP £16.99 hardback, eBook also available.
If you buy the book through Amazon, remember to use our Amazon shopping link which will identify you as an Epilepsy Society supporter. Around 5% of the purchase price of the item(s) you buy will be automatically donated to Epilepsy Society at no extra cost to you.
More information
You can find out more about SUDEP here.