A Smell of Burning
Jonathan Cape 256pp £16.99 The Week bookshop £12.99
Epilepsy is a condition that can “seem to have more power over the beholders than the sufferers”, said Helen Davies in The Sunday Times. For centuries, the “falling illness” was seen as a kind of demonic possession. Until quite recently, sufferers were hidden away in epileptic colonies. Today, it is recognised as a medical condition caused by abnormally intense electrical activity in the brain. In A Smell of Burning (named after the odour that some sufferers experience before a seizure), Colin Grant explores epilepsy’s “brutal and bruising” history. As both a doctor and a BBC broadcaster, he’s well suited to this task, but his interest in the subject is also personal. Grant’s younger brother, Christopher, was epileptic: he had his first seizure as a teenager in the family bathroom; the door had to be broken down. Grant describes how, with each subsequent “turn”, a bit more of the once “exuberant and happy” Christopher got “chipped away”. This book is a “touching tale of brotherly love, and a reminder about how crashingly vulnerable human beings can be”.
It is epilepsy’s recent history that is “most startling”, said John Gribbin in the Literary Review. While it’s hardly surprising that the Greeks and Romans had a “superstitious attitude”, it seems remarkable that a 22-year-old Graham Greene seriously contemplated suicide when diagnosed in 1926, or that Prince John, youngest son of King George V, was “hidden away” because of the “stigma”. In the UK, a marriage could be declared void because of epilepsy “right up until 1970”, and the official Chinese term, which translated as “crazy seizure disorder”, was only changed in 2010. Thankfully, the danger today is “greatly reduced” by anti-epileptic drugs, which are still being refined.
For some, however, the drugs come at a cost, said Maggie Gee in The Observer. They experience “a feeling that the self has been changed, a loss of acuteness to the sensations”. As a result, many epileptics are “non-compliant” – such as the singer Neil Young, who has “eschewed” treatment for 20 years. Some, indeed, view epilepsy as a route to a “higher plane of consciousness”, what Grant calls the “ticket to heaven” school of thought. Christopher himself sometimes experienced “bliss” during seizures, and eventually stopped taking drugs – a decision that had tragic consequences. Grant’s book is an “extraordinary work of love and art, which left me choked with tears”.