Fifteen Eighty Four

In relating the story of epilepsy in its modern era. I have used the analogy of the boat journeying through rough seas, buffeted by diverse and independent currents, some medical some scientific, some societal and some personal. It has been an erratic journey, certainly not one like that of an ocean liner taking the shortest straight-line route to its destination. It has been a journey plagued by false navigation and blind fjords, by storms and by whirlpools. It is an analogy I am fond of, for it seems to me to convey also hazard and risk, bravery and hopefully travel to a new world.

This is where history is important. As the novelist Michael Crichton (himself interested in epilepsy) put it ‘‘if you didn’t know history, you didn’t know anything. You were a leaf that didn’t know it was part of a tree.’ It is important as the concept (‘the idea’) of epilepsy – its meaning and what it signifies – has changed radically over this period,  and it is this changing concept which explains much of the meanderings of medical practice and societal attitude.  Central to the idea of epilepsy is whether it has been considered a mental or physical disorder, whether it has other inherent features in addition to seizures (for instance personality change) and whether it Is an inherited or environmentally driven disorder. As the pendulum swings on each of these points, the meaning of epilepsy has changed.

A special place must be given to ideas of heredity. These have always been uniquely important in epilepsy, with the genetic inheritance seen as ‘the essence of a person’. Heredity, in the first half of our history led to social isolation and social oppression, culminating in the Nazi eugenic actions. When the full horror of German eugenics was uncovered, the genetics of epilepsy were for a time side-lined in post-war epilepsy research. But then the extraordinary scientific advances made in subsequent decades fed through again into practice and powerful genetic measures are again impacting on epilepsy. Heredity runs through this book as a central theme, and an historical understanding of this topic particularly is important.  If you are a leaf unaware of the tree, there is a danger that nature will again recycle.

This then brings us to a final question. Although I have freely used the term ‘epilepsy’ throughout the book (for convenience really, and in the absence of any agreed alternative), I wonder whether epilepsy as a disease entity really exists. Could it or should it go the way of neurasthenia for instance, a term now best suited to the gothic novel than to modern medicine but one which at the beginning of the 20^th century was widely diagnosed. There is no doubt that ‘epileptic seizures’ do exist, and this will be painfully only too obvious to millions of sufferers around the world, they are a reaction of brain seen in numerous species and one which is unlikely ever to disappear. But – and here is the question – is there really such a disease which justifies the title ‘epilepsy’?. Medically, I am sure there is not. ‘Epileptic seizures’ occur in many different settings, with many (thousands) of different causes, many different mechanisms and take many and varied forms. It does not conform to the medical model of disease. We would not now call ‘headache’ or ‘cough’ a ‘disease’ – they are symptoms or signs not diseases. I am not the first to notice this, and it has been a theme repeated on numbers of occasions in the long twentieth century – but yet the term persists. The reason perhaps is that it has a social meaning and a personal significance which transcends its medical illogicality. It is used as short-hand not just for the fact of being liable to seizures but also for their consequences in many aspects of life – for instance on education, employment, friendships and relationships, driving and domestic life – and the term shows up in legal proceedings, to determine resource allocation and in political debate. This would be fine if it were not also the fact that the term also carries mountainous historical and prejudicial baggage.

If epilepsy does not exist medically, perhaps too the term should be outlawed from social discourse. My guess is that this would render a service to those suffering from seizures. Terminology has been changed in Eastern languages for the same reason, and the lay organisations have replaced the prejudicial word ‘epileptic’ with a ‘person with epilepsy’. Surely, though, it would be better to go further and abolish the concept altogether. In my view this might make a more fundamental difference than anything current medicine can deliver. This topic is taken up in the last pages of the book – a step perhaps too far, but one worth at least debating.