Colin Grant’s memoir of his younger brother is a triumph, vividly showing how epilepsy contributed to that relationship’s particular flavour. Like the epileptic fits themselves, his brother appears in the narrative at intermittent moments, suddenly bringing a personal intensity to the more dispassionate discussion of the condition. And in some ways Christopher is like a ghost, not fully present, with very little to say in the story. For he, and other family members, are very reluctant to talk about epilepsy, even to Colin, the medical student in the family.

A Smell of Burning is much more than a memoir of Christopher and how his epilepsy affected his life and his relationships. It presents various aspects of epilepsy with particular chapters on its history, famous people who had epilepsy, how people with epilepsy have been looked after (or not), the real and imagined associations with mental health and hysteria, drugs and other treatments, surgery and its risks, the nature of aura, epilepsy’s religious associations and products, and the subtle effects on personality. Finally it considers the sudden unexpected deaths of people with epilepsy (SUDEP), in the context of Christopher’s death at the age of 39 from a heart attack in mid-fit.

Powerlessness is an on-going theme. Colin Grant openly confesses his own feelings of powerlessness during the fatal last attack, feelings that he had lived with since Christopher’s teenage years, and symbolised by the final futile attempts at resuscitation. For what is the role of the family member when a loved one is fitting, but to hope, whilst keeping him safe from harm during the fit? Colin was also powerless to talk openly about epilepsy within his family. The social stigma associated with the condition in Jamaican society was enough to sabotage any meaningful discussion. The boys’ mother could scarcely incorporate Christopher’s fits into her world of God, Jesus and the devil, in which such events were messages about the moral state of the family. Even between the brothers there was a distance that prevented long-term informed detailed planning of treatment, since the diagnosis was not openly acknowledged. Christopher himself refused to stay on his prescribed anti-epileptic medication, sodium valproate, which ‘reduced him’, leaving him ‘with a feeling … of living a life out of sync’.

Colin Grant ponders in great detail the associations of epilepsy both with insanity and depression, and with artistic creativity. There seems to be something alien about people who are not always with us, whose personalities are periodically under a different controller. Society’s attempts to explain this otherness (or failure to do so) has resulted in considerable hardship for epileptics, who in any case are blocked from some employment, being unable to drive or manage machinery that needs constant monitoring. At one point we see Colin getting into the passenger seat of the car Christopher has bought against all advice, all the while begging his brother not to drive. The car ends up in a ditch on the side of the M1, a casualty of one of Christopher’s fits, although luckily the only casualty.

The links between epilepsy and creativity are also explored through the stories of Van Gogh, and writers such as Dostoevsky, Philip K Dick, and artist Jim Chambliss. Christopher had his own dreams of being a film director, showing to Colin a baffling film of constant darkness which represented his epilepsy, and unable to believe Colin’s baffled response: “Can’t you see? I expected you, of all people, to see”. It is a telling moment, revealing the divide that epilepsy creates, even with Christopher’s closest sibling.

A Smell of Burning is an excellent introduction to the experience of epilepsy from the relative’s point of view, together with an entertaining and interesting wider discussion about the nature of epilepsy in our society. For Gavin Francis, reviewing it for the Guardian, A Smell of Burning is so engaged with the cultural significance of epilepsy and the history of how that significance has changed, that it is not a good introduction for someone newly diagnosed today. That may be true, and yet the story of Colin’s experience of living with the uncertainty of his brother’s epilepsy rings very true, and is an experience that clinicians should hear. A set of useful notes and a bibliography are limited to the end, leaving the 200 page narrative uncluttered, but with extra material for those who are interested. Strongly recommended.

 

Grant, Colin (2016) A Smell of Burning: A Memoir of Epilepsy, London, Jonathan Cape, (and paperback published by Vintage 2017).

Colin discussed his brother’s death from SUDEP on the SUDEP Action website:

https://sudep.org/article/colin-grant-discusses-sudep-to-help-raise-awareness

The Epilepsy Society published an interview with Colin (2016) that launched his book:

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