This forthcoming book is a collaboration between the Author, Ian Bone and Development Editor, Jo Hargreaves. It is supported by the William Quarrier Scottish Epilepsy Centre to which all proceeds will be donated. The cost of the project has in part been met by generous donations from Sir Boyd Tunnock of Thomas Tunnock Ltd and Bill Scott, Patron of the William Quarrier Scottish Epilepsy Centre; Sacred Lives promotion is supported by Ken McEwan Chief Executive McEwan Fraser Legal, Solicitors and Estate Agents.Sacred Lives will be available as an eBook from early autumn 2020
In Ancient times those with epilepsy were considered to have unique powers, even hailed as geniuses, and regarded as having a sacred disease and leading sacred lives. It is from this concept of sacredness that the title of this book is taken.
For Health Professionals there are many books about epilepsy but very few are written with a general readership in mind. Public lack of knowledge results in a misunderstanding with the perpetuation of false beliefs and ill-conceived prejudices. Through reaching a wider audience this book aims to redress this. 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. The unpredictable, repeated and short-lived loss of self-control which accompanies seizures, along with its “hidden” nature, in that nothing seems amiss between attacks, sets epilepsy apart from all other long-term condition and robs it of the understanding and support that more evident disabilities receive.
Chapters 1 and 2 of this book review the history of epilepsy from ancient times to the present, exploring why the condition became so stigmatised and how people with epilepsy have been persecuted, demonised, and socially rejected. Chapter 3 examines the investigation, classification, and causes of epilepsy in relation to the major scientific advances that have been made in the last 100 years or so, while at the same time social understanding and acceptance of epilepsy has lagged far behind. The depiction of epilepsy in the arts is discussed in detail. Chapter 4 focuses on the portrayal of epilepsy in works of literature and examines the evidence that a significant number of writers were affected by the condition. Chapter 5 considers the depiction of seizures in works of art and discusses artists of the past who had epilepsy. Chapter 6 examines the positive and negative ways in which epilepsy has been depicted on the moving screen, and Chapter 7 covers similar ground in relation to music and the theatre. Raising awareness of the many misconceptions about epilepsy is the key to bringing about widespread social acceptance of the condition by the general public. Chapter 8 evaluates the impact of print, online, and social media as a tool for education, communication, and support for people with epilepsy. Chapter 9 considers a number of famous people whose epilepsy has been established with certainty, claimed, or disputed. The lack of modern-day ‘celebrities’ who are willing to be open about their epilepsy and become role models for others with the condition is also discussed. Society still treats people with epilepsy differently from the rest of the population by adversely affecting their quality of life, limiting their life opportunities, and eroding their human rights. Epilepsy in society is examined in relation to laws and officialdom in Chapter 10, with regard to behaviour, violence, and criminal law in Chapter 11, and in terms of stigmatization, discrimination, and social isolation in Chapter 12. The book concludes with a personal account of my experience from a parent’s perspective as my son’s life with epilepsy has slowly unfolded.
My aim in writing Sacred Lives has been to challenge the reader to think afresh about the condition itself and about the lives of those for whom epilepsy is a daily reality. Inevitably, the book represents my own personal experience, is eclectic in its content, and largely reflects a western European perspective. However, despite these limitations, I hope that it may engage and inform a diverse non-professional readership as well as gain a greater understanding of and empathy with those who live with the condition. In 1906 the William Quarrier ‘Colony for the Mercy of Epileptics’ opened in the West of Scotland. It is now an independent hospital, known as the William Quarrier Scottish Epilepsy Centre, and it is to this that funds, raised by the sales of Sacred Lives,will be donated.