Encephalitis is a devastating condition whose impact upon people should not be underestimated. It robs people of abilities most of us take for granted, it leaves people without their loved ones, and even in those families where the person affected survives the person they once knew can be dramatically changed.
Life After Encephalitis provides a unique insight into the experiences of those affected by encephalitis, sharing the rich, perceptive, and often powerful, narratives of survivors and family members. It shows how listening to patient and family narratives can help us to understand how they make sense of what has happened to them, and also help professionals better understand and engage with them in practice. The book will also be useful for considering narratives associated with brain injuries from other causes, for example traumatic brain injury.
Life After Encephalitis will appeal to a wide range of professionals working in rehabilitation settings, and also to and survivors of encephalitis, their families, and carers.
Table of Contents
Foreword by Simon Hattenstone Preface 1. Introduction 2. Encephalitis – what it is, and what it does 3. Medicine and the history of narratives 4. The Survivors 5. The Spouse 6. The Parents, and their children 7. The one who didn’t make it 8. Neuronarratives: authors and readers 9. Narratives in professional practice 10. Concluding remarks
Ava Easton is a health scientist and researcher specialising in encephalitis, acquired brain injury, and neuro-narratives. She has worked at The Encephalitis Society since 2000, and became Chief Executive in 2011. Ava is also an Honorary Fellow at the University of Liverpool and lectures around the world on encephalitis and its consequences.
"Easton’s book makes you think about identity. If our brains hold our memories that largely determine ourpersonality and effectively define us, what does it meanif part of our brain is destroyed? Personality creates relationships—so when someone you love changes, what happens to the relationship? Encephalitis is undoubtedly a thief, and Easton does an excellent job at explaining why." – Jules Morgan, The Lancet Neurology
"I always thought I was a one-off; unique. Back then I had no one to share my experience with…If this book had been available then, I would have realised others had gone, and were going through, similar things to me." – Simon Hattenstone, Journalist and features writer, The Guardian
"Life After Encephalitis has given a voice to the millions of people worldwide affected by this horrible condition. As the sister of someone who fought her own battle with encephalitis, I believe it was important that my mum contributed to Ava’s book so that others can take some comfort in knowing they are not, and never will be alone." – Rebecca Adlington, OBE
"This is a wonderful book. Ava Easton says in the preface to Life After Encephalitis that she hopes that it gives a voice to survivors of encephalitis. It does. It is a book of stories from which we learn what encephalitis is and how it affects the brain, but more importantly how it changes the lives of those who survive it." – Professor Jon Evans, University of Glasgow
"I was absolutely delighted to provide the cover image for such an important book. Having met several survivors of encephalitis I realised how deeply this condition impacts on their lives. Ava’s book does a fantastic job in sharing some of their stories whilst also empowering professionals, and I’m sure it’ll go a long way to improving understanding and care of encephalitis survivors and those left bereaved by the condition." – Bill Ward
"When my husband suffered a brain injury we were plunged into an unknown landscape with no knowledge at all of how to cope or what had even happened. This immensely readable book provides immediate insight, help and knowledge of Encephalitis and will be an invaluable guide to anyone who has to deal with this frightening condition" – Kika Markham
"Dr Ava Easton has done something remarkable with this book: she has given life and support to patients and families living through this silent disease. From the first-person cases to the in-depth research and passionate dedication to her work as the head of the Encephalitis Society, Ava Easton has given us a gift with this tremendously important book." – Susannah Cahalan, author of Brain On Fire: My Month of Madness
"The book is a valuable and overdue addition to the growing body of literature on encephalitis; a disease that manifests in a variety of forms, is often misunderstood, devastating and sometimes deadly. The book is unique in that it tells many stories of encephalitis, from different perspectives, eg, the survivor, the parents of those that did not make it, the physician, as well as those that are unable to tell their story. Encephalitis is much more than just "inflammation of the brain" and its consequences are far-reaching and life-altering. The many narratives in the book illustrate this brilliantly. The book will appeal to a wide readership, including academics, healthcare providers and all those that have been affected or have an interest in learning more." - The Anti-NMDA Receptor Encephalitis Foundation
"This is an excellent book. I can't put it down. Thank you for pulling together these patient stories which are at once both ordinary and extraordinary. I've no doubt of the importance of this work for medical professionals." - Benedict Michael, NIHR Academic Clinical Lecturer, The Walton Centre NHS Foundation Trust, Liverpool, Centre for Immune and Inflammatory Disease, Harvard Medical School
"This is an essential book, not only for those recovering from encephalitis, those relatives or friends or professionals involved in the care of people with encephalitis, neurology wards and clinic areas, but also the general reader interested in knowing more about the impact of sudden acquired brain disease on people through patient narratives." -Michael Zandi, ACNR co-editor, Honorary Consultant Neurologist National Hospital for Neurology and Neurosurgery
"Life after encephalitis provides a voice to individuals affected by encephalitis. We all tell stories; it is part of being human as a way of making sense of our experience individually or with others. Our sense of self can be understood as the story of who we are and this identity can be interrupted by encephalitis without invitation or warning. Cognitive problems with memory or language and psychosocial changes following encephalitis can alter an individual’s sense of who he or she is. The narratives within the book can help people affected by encephalitis to understand the new path they find themselves on. The book also adds to the knowledge and understanding of professionals on their clinical journey, and readers’ understanding of themselves with reflections on hope, tenacity and honesty." -Bonnie-Kate Dewar, PhD, Director Neuropsychological Services, London