It may come as a surprise to the reader that at one time, before the religious demonization of epilepsy, people with the condition were believed to have unique powers, even to be geniuses, and were regarded as having a sacred disease and leading sacred lives. It is from this perception of the illness that this book takes its title.
I have been motivated to write this book by my personal experience of my son Tim having epilepsy, an experience that for 40 years has run almost in parallel with my career as a neurologist treating many patients with the condition. It is the insights that have resulted from learning about epilepsy from 'both sides of the fence' that form the basis of this personal account of the condition and society's reaction to it.
There are already a number of authoritative books on epilepsy, including Owsei Temkin's The "Falling Sickness", Michael Eadie and Peter Bladen's "A Disease Once Sacred", and Jeannette Stirling's "Representing Epilepsy". However, these are targeted at an academic professional readership, and do not make easy reading for the more general reader. Similarly, the many articles about epilepsy that have been published in medical and scientific journals are intended to communicate advances in scientific knowledge to informed experts, rather than to provide a more widely accessible understanding of the condition. In contrast, much of what the general public does hear about epilepsy depends on what is deemed newsworthy by the popular media. A more modest contribution is provided by epilepsy charities, whose websites include information about recent advances in treatment and care. Consequently, despite the increasingly well-informed support provided by healthcare professionals for people living with epilepsy, the majority of the general population still has a very limited and often erroneous understanding of the condition. This is clearly a recipe for the perpetuation of myths about epilepsy.
My hope is that by offering an accessible text that bridges the gap between expert and public knowledge I can in some small way address this situation. The intended readership is broad, encompassing people with epilepsy and their families, those who encounter the condition through friends, work colleagues, or acquaintances, and those who simply wish to have a better understanding of this highly stigmatized condition and the effect that it has on people's lives. It is also my earnest wish that healthcare professionals themselves may find something in these pages that will help them to better understand and support their patients with epilepsy.
It is the unpredictable and repeated, albeit short-lived, loss of self-control which accompanies seizures that sets epilepsy apart from other long-term conditions. The embarrassment and shame caused by being 'out of control' are accompanied by fear and anxiety about what might have been said or done during a seizure episode. The emotions that are experienced after a seizure can include guilt, loss of confidence, and low mood. Being in control of our thoughts and actions is central to our self-image and the manner in which we and society believe we should behave, and failure to conform to such norms, for whatever reason, is deemed antisocial and dismissed as unacceptable. An appreciation of this is central to understanding the mindset of people with epilepsy. Finally, the condition is regarded as a 'hidden' disability', as during the periods between seizures there are no visible clues to its presence. This results in less public empathy for people with epilepsy, despite the ongoing social and medical effects of the condition, than for those with a visible physical disability.
The book is written in five parts. Chapters 1-3 focus on the history classification and causes of epilepsy. Chapters 4-7 on epilepsy in the arts, chapters 8 and 9 on epilepsy in the media and chapters 10-12 on epilepsy in society. The final part provides a personal account of living with epilepsy.
Part 1. History, classification and causes of epilepsy.
Chapter 1. Epilepsy from ancient times to the eighteen century.
This takes the reader from ancient civilizations to the dawn of scientific knowledge. Epilepsy was first described in the Akkadian writings of the Empire of Mesopotamia around 2000 BCE and named "the falling disease" in subsequent Babylonian medical texts. It was during ancient Greek and Roman times that the first accurate clinical observations were made and theories on cause and treatment emerged. The Greek physician Hippocrates first introduced the term "sacred disease" and rejected the idea that seizures were caused by evil spirits. His observations documented in his study "On the Sacred Disease" led him to reject the magical treatment of charlatans and recommend diet and herbal remedies. The Turkish-born Greek physician Galen (c 130-210 CE) next gave lifestyle advice regarding sleep and stresses which is still pertinent today. The medieval period was less enlightened and, through upholding the notion of demonic possession, with the casting out of spirits and exorcisms, the ancients' more caring and holistic approach to epilepsy was largely forgotten. In medieval and renaissance paintings the "casting out" of unclean by Jesus Christ and numerous saints often depicted the "victim" in the throes of what resembles an epileptic seizure. Towards the end of the sixteenth century the dogmas of the church were being challenged by those first physicians who dared to explore the biological causes of epilepsy and discount the role of the supernatural or sin. The English physician Thomas Willis (1621-1675) had now began to studying the anatomy of the brain and suggested that epilepsy arose directly from it. The enlightenment produced a host of other physicians each of whom added further knowledge on causes of epilepsy and its treatment. The first 2000 years or so of the history of epilepsy have taken us a long way down the path towards understanding the condition. However, by the end of the Enlightenment there was still no truly effective treatment, the mechanism underlying seizures remained obscure, and despite the fact that medical science had refuted the notion that demons and animal spirits were involved, beliefs about demonic possession and madness were still widespread among the general population. Prejudice, stigma, and rejecting attitudes prevailed, and there was still little prospect of hope for those with a 'Sacred Disease' that had to be endured without respite.
Chapter 2. Epilepsy from the nineteenth century to the present.
The early nineteenth century saw epilepsy slowly emerge from behind the shadow of ignorance. Not only was it more openly spoken about, but also an increasing number of medical books, scientific papers, and conferences were devoted to the subject. People with chronic epilepsy were no longer invariably housed in prisons or asylums and slowly, as understanding of the condition improved; designated wards and epilepsy colonies provided care and respite. The improving knowledge of epilepsy came from specialist staff, working in these designated hospital wards and colonies, who began collecting data on the incidence of the condition, and the outcome and social circumstances of those affected by it. This led to a growing understanding of the social implications of having epilepsy. During the Victorian period, despite the stigma that was constantly resurfacing, writers such as Dickens and Dostoevsky finally gave a voice to those with epilepsy. By now, a scientifically based understanding of the causes of epilepsy had replaced the early medical theories about vapours and contagion. Rational effective treatments had yet to be developed, but it was now widely accepted that epilepsy and hysteria were completely separate conditions. Many of the early drug treatments for epilepsy were discovered serendipitously. Although the use of animal models to test potential new drug and surgical treatments would be considered unacceptable today, at the time few alternatives were available. If these pioneering but controversial methods had not been used by the early researchers, it would have taken much longer to develop many of the effective pharmaceutical and surgical treatments for epilepsy, thus withholding therapeutic benefit from large numbers of patients. Thankfully, advances in the identification of potential anti-epilepsy drugs and the development of functional brain imaging techniques have now made animal studies largely redundant. The chapter highlights those physicians and surgeons who made such progress possible.
Chapter 3. The investigation, classification and causes of epilepsy.
The 20th Century has seen the development of surgical treatment for epilepsy, the emergence of anti-epileptic drugs, and a growing understanding of the molecular processes and genetic factors that underlie seizures. A much wider range of investigations is now available, and they have made a huge contribution to establishing the diagnosis, causes, and classification of epilepsy. Given the global nature of the condition, we can no longer ignore the glaring inequalities in the availability of the benefits of these advances, most notably access to good-quality medical care for epilepsy. Moreover, social understanding and acceptance of epilepsy lags far behind the major scientific advances that have been made. The chapter describes those involved in the advances of seizure recording and brain imaging and how these pioneers provided the knowledge that led to finding the many causes of epilepsy as well as defining the many different types of seizures that individuals can experience.
The century started with the emergence of pastoral colonies for those with epilepsy and ended with the inception of highly developed "epilepsy centers" staffed with epilepsy specialists offering a host of scientifically based treatments. It has also seen the emergence of epilepsy charities representing those with epilepsy and ensuring that their voices are heard and their concerns addressed. The challenge now is to educate the wider public, as only a better understanding of epilepsy can overcome long-held attitudes and prejudice. The last 120 years have seen huge advances in the treatment of epilepsy, from diagnostic tests to management based on a genetic understanding of the condition. Nevertheless, attitudes to the condition among the general public have continued to lag behind medical progress, with epilepsy still widely perceived as a stigmatized disease
Part 11. Epilepsy in the arts.
Chapter 4. Epilepsy in literature and in authors.
It has been claimed that a significant number of writers, including Gustave Flaubert, Charles Dickens, Edgar Allan Poe, Fyodor Dostoevsky, Lord Byron, Dante Alighieri, Sir Walter Scott, Edward Lear, and Jonathan Swift, were affected by epilepsy. However, with the exception of Flaubert, Dostoevsky, and Lear, there is little evidence to support these claims. For example, it has been suggested that Edgar Allan Poe's 'difficult' personality was due to his being an 'epileptic', whereas in fact he experienced blackouts caused by binge drinking and there is very little evidence that he suffered from epilepsy. It seems likely that Dickens had severe renal colic that caused him to collapse occasionally. Speculation that Byron had epilepsy is based on a single quote stating that he 'fell prey to violent convulsions' when, at the age of 16 years, he heard that a woman he loved was thinking of getting married to someone else.
The appearance of characters with epilepsy in fiction and drama can be traced back through history with seizures being deployed for dramatic effect as well as for plot and character development. As early as the sixth century BCE, the Greek playwright Euripides had linked epilepsy to madness and violence. Epilepsy appears in the lives or in the works of many authors and sometimes those who have written about it have also had it themselves. The chapter discusses Shakespeare, Tennyson, George Elliot, George Sand, Dostoevsky, Dickens, Lear, R.D. Blackmore, Graham Greene and many more. This account of epilepsy in literature is selective and by no means inclusive. There are many novels, not mentioned in this chapter, that have touched peripherally upon epilepsy and I have focused solely on English-language literature and English translations of world classics. It would be a Herculean task to include all the literature in all languages where epilepsy has made an appearance, and I am not alone among those who have tried to review the subject and ended up merely scratching at the surface. However, on the basis of my chosen selection I hope that a few meaningful conclusions can be drawn.
Fiction appears to have gone full circle in its representation of epilepsy. Whereas early writers demonized those with the condition, others provided sympathetic and accurate accounts. As a generalization, contemporary literature seems often to have reverted back to the earlier myths and prejudices, perhaps because the primary aim is to sensationalize and sell books rather than to responsibly inform the reader. Those authors with knowledge of epilepsy that has been acquired through personal experience present a more positive picture than those without such knowledge. Among authors who themselves have had epilepsy, some have written openly about it, while others have concealed their condition due to feelings of shame and some may have had a lasting effect through being misdiagnosed with it . Many authors who have suffered from epilepsy themselves have tended to live isolated lives, and have managed to use their circumstances to enhance their art. The small band of those who have embraced their condition, have freely included characters with seizures in their writing, portraying them in a positive manner, and in doing so have gone a long way towards 'normalizing' the condition and reducing its stigma.
Chapter 5. Epilepsy in works of art and artists.
This chapter considers the depiction of seizures in works of art, and discusses artists of the past who had epilepsy themselves It is probably in Christian Renaissance works that the negative perceptions of epilepsy are most clearly expressed. Such preoccupations centered upon demonic possession and the need to 'cast out' the demon and make the possessed person 'clean.' This was illustrated by using symbolism, and required skill in depicting a twisted torso or face. The challenge to pictorial art was in representing an evolving process, namely the seizure, in a static form. In this chapter there is an overemphasis on Western Christian religious art and an under-representation of the depiction of epilepsy in Eastern pictorial art. Here we explore the depiction of epilepsy in Greek, Early Christian, Renaissance, early Latin American, modern, and contemporary art. The painters discussed include Hieronymus Bosch, Benjamin Cuyp, Pieter Brugel, Raphael, Van Gogh, Kiffin Williams, Frida Kahlo and many more including more recent artists
Pictorial art is a powerful medium for influencing change as well as for chronicling the views and events of the time. Until comparatively recent times it was often the commonest method of communicating a narrative. For example, the role of paintings in promoting religious perceptions and stories is evident to anyone who visits a cathedral, mosque, or synagogue. What can we learn from paintings about the shifting sands of public opinion and knowledge of epilepsy? Before the modern and contemporary eras, the person with epilepsy was viewed as unclean, and the saint or god was regarded as the purifier. This is consistent with our knowledge of how people with epilepsy were perceived in the Ancient and Renaissance periods. Christ, St Valentine, and the Aztec goddess Tlazolteotl are all examples of those who had the power to cleanse, and the votive tablets reveal how grateful the recipients of their miracles were. There is no empathy with or understanding of the epileptic -the only message that is conveyed is that they are in the wrong.
But do Raphael's "Transfiguration" or Rubens' "The Miracles of St Ignatius of Loyola" truly represent epilepsy? And are paintings of 'the stone of insanity' in fact paintings of early attempts to perform epilepsy surgery? Unless the title of the painting actually includes the words 'epilepsy' or 'epileptic', any conclusions about what is being depicted are bound to be speculative and based on personal interpretation. But is that not one of the greatest appeals of pictorial art? The artist is no longer around to be asked what they intended, and even if their intentions were known, they would not necessarily be the same as what the observer sees in their work. Interpretation also depends upon the experiences and professional background of the observer, as evidenced by specialist journal articles in which the same painting is described by a psychiatrist as showing the classic textbook features of hysteria, and by a neurologist as being indisputably a seizure.
In modern and contemporary art there is no ambiguity. The title of the painting tells us what it depicts, and often the artist is around to tell us what it is conveying. The use of symbolism to describe the narrative has become redundant. Paintings are now more empathetic, consistent with the shedding of much of the mystique and stigma of epilepsy. Now artists with epilepsy are expressing their creativity and using it to convey what it is like to go through the various stages of a fit. Pictorial art has moved from marginalizing epilepsy to informing and educating about the condition in a positive manner. However, such art is not yet reaching the wider audience, and its impact on improving the public's understanding of people with epilepsy is still marginal. With regard to artists of the past who had epilepsy themselves, we see in the lives of Van Gogh and John 'Kiffin' Williams the same recurring themes of social withdrawal, depression, and loneliness that were also experienced by writers such as Lear and Flaubert. Also apparent are the feelings of shame and stigma, and fear of embarking on marriage and parenthood, as articulated by Kahlo. In addition, we get a glimpse of the discredited 'epileptic personality' in their behaviors.
Chapter 6. Epilepsy on the moving screen.
Whereas pictorial art does not nowadays reach a particularly wide public - art galleries being mainly visited by art historians, potential purchasers, parties of schoolchildren, and the elderly - the moving picture has considerable influence as a medium for social and public health education. However, it has also depicted people with epilepsy more graphically and in some respects judgmentally. In this chapter we shall consider the portrayal of epilepsy in cinema films and on television. My first introduction to epilepsy was as a 10-year-old in a cinema - not in relation to the film I was watching, but to a man in the audience who without warning suddenly started to have convulsions. I can still vividly picture his fellow moviegoers moving to sit further away from him, and the sense of isolation that then surrounded him.
The films in this chapter discussed include "A Matter of Life and Death", "Night unto Night", "The Winning Team", "Drugstore Cowboy", "The Andromeda Strain", "Mean Streets", "One Flew over the Cuckoo's Nest" and many more. The TV programs include amongst many "Dr Kildare", "East Enders", "Medics" and "Coronation Street".
The depiction of epilepsy in a significant number of films is demonstrated both by the International League against Epilepsy 2009 Budapest film festival and by Toba Kerson's painstakingly compiled database which lists the many example
- ISBN13 9781838036706
- Publish Date 1 November 2020
- Publish Status Active
- Publish Country GB
- Imprint Ian Bone
- Edition Abridged edition
- Format eBook
- Language English