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The purpose of this book is twofold: first, to describe the history of epilepsy in its modern era, from 1860–2020; second, to explore the reasons for the directions that epilepsy has taken. Epilepsy is much more than a simple medical illness. It has attained a symbolism (an ‘idea’) which has become deeply embedded in the culture of mankind. There have been powerful medical, scientific, societal and personal currents shaping its course, and this book attempts to take a broad perspective on its history, incorporating all four elements. The influence of science is one often overlooked by historians, and yet has played a crucial role. The hegemony of capitalism in the long twentieth century, and the influence of society and culture have equally been often ignored in scientific and medical treatises, and yet have been fundamental in the setting of the epilepsy agenda. The personal story is told through personal testimony and the creative arts which can provide deep insights into attitudes and concerns. Robert Burton’s Anatomy of Melancholy is taken as a model for the approach taken. The complexities and inherent biases of the book are also described.
The modern era of epilepsy can be said to date from around 1860. In the ensuing decades epilepsy was at the centre of an enormous range of endeavours which included Hughlings Jackson’s landmark works, the theory of cerebral localisation, the introduction of bromide and then phenobarbitone therapy and the first attempts at the surgical resection of the epileptic focus. It was the period when idiopathic epilepsy (‘genuine epilepsy’) was considered to be an inherited degenerative brain disorder, associated with mental symptoms and deficiency and a specific ‘epileptic personality’. It was the period when neurology first became a recognisable medical specialty, special hospitals for epilepsy opened and epilepsy colonies were formed all over the world. Lombroso considered epilepsy and criminality to have close connections. Inpatient treatment was conducted within the asylum system by psychiatrists. Epilepsy was associated with enormous stigma and was widely hidden or denied. In 1911, eugenics was proposed as a solution to the problems caused by epilepsy. Dostoyevsky, Zola, Dickens, Hardy and others included epilepsy in their books, and leading authors suffered from epilepsy but concealed their condition. International medical and psychiatric congresses were held, and during one of these, the International League Against Epilepsy was formed.
The understanding of epilepsy in 2020 is compared to that in 1860. During the intervening years, many theories and practices were introduced, widely adopted and then fell from favour. Despite this, remarkable progress has been made. This chapter takes stock not only of the substantial body of knowledge that has endured, but also of the mistakes made, and blind alleys entered, in the past. The advances made in science and medicine, and the changes in societal attitudes, are put into their historical context. The second purpose of this chapter is to consider where, in the author’s opinion, contemporary epilepsy seems now to be taking wrong turnings and which current concepts are likely to wither like others in the past. Here the spotlight turns also onto the ‘dark side’ of epilepsy, where ideas are not only wrong but detrimental and false. In recent years, terminology has changed and in Eastern cultures the word for epilepsy has changed its form. The question is also debated as to whether reform should be more far-reaching and the term ‘epilepsy’ dropped altogether.
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