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
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
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