Ava Easton, author of Life After Encephalitis, is our Routledge Psychology Author of the Month for March! Listen to our exclusive interview and learn more about her fantastic new book!
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.
Encephalitis, in particular its consequences for people affected, and family members, for over 15 years. Ava is an accomplished speaker and lecturer on encephalitis and her work has taken her all over the world. Ava has also produced and published several papers on various aspects of Encephalitis and its after-effects, and is involved in a number of research studies looking into the processes and outcomes of Encephalitis. Ava is an Honorary Fellow at The University of Liverpool, Vice-Chair of the United Kingdom Acquired Brain Injury Forum (UKABIF), a member of The International Encephalitis Consortium and Auto-immune Encephalitis Association Working Group, and sits on the editorial board of the journal Brain Injury. Follow her day-to-day work on Twitter: @encephalitisava.
What is encephalitis and what are its consequences?
Encephalitis is inflammation of the brain caused by often common infections or by a person’s own immune system mounting an attack on the brain. It has a high mortality (death) rate in comparison to many other neurological infectious conditions (up to 30% may die depending on the cause even with treatment) and for many people who survive a brain injury is unfortunately an outcome. People may go on to experience a range of difficulties from cognitive, behavioural, social through to physical and emotional.
What is your professional experience of working with those that suffer from and treat the condition?
I have worked with probably more survivors and families affected by the condition than any other person in the world over the last 16 years. That sounds a grand claim but it really has been my vocation since I first went to work for The Encephalitis Society (www.encephalitis.info). I soon learned that the traditional literature (at that time) centred very much around individual case studies and often around Herpes Simplex Encephalitis. I soon realized that the literature was not reflective of the survivor’s experiences which was much more broad than these often very extraordinary (but still very interesting!) accounts. The outcomes for people are very much on a continuum from a relatively good recovery through to severe disabilities and cognitive deficits. I hope that the work of The Encephalitis Society not only opened people’s eyes to the array of outcomes but also contributed to validating the experiences of those who survive, their families, and those left bereaved, by what is often a devastating and life-changing experience.
Why did you decide to write this book?
That’s an interesting question! Well firstly I was invited by our President, professor Barbara Wilson, OBE. However I think I very much saw it as an opportunity to expand people’s understanding of the condition; to add balance to some of the literature already in existence, and to give voice to those affected by the condition. I do cover this question in more detail my first podcast about the writing the book, which can be found here: http://www.encephalitis.info/support/support-services/life-after-encephalitis-a-narrative-approach/
What’s the one thing you hope readers take away from your book?
One thing? Gosh that’s difficult! Depends on who is reading it I guess…if it was a survivor then the answer would be hope. Some of the stories describe the impact on people’s lives but I am never ceased to be amazed by the strength of the human condition and their capacity to generate stories of hope and inspiration. If the reader is a professional, then it would be to recognise the power of people’s stories in supporting their recovery from the condition.
Is there anything you’d like to highlight about this topic or your book in particular?
Yes, thank you for asking! First, encephalitis devastates lives, second, it is more common than some other neurological conditions that receive much higher clinical and public profiles, and thirdly neuropsychology can be a life-changing intervention in support of people’s recovery and rehabilitation.
Encephalitis has recently been portrayed in the hit TV show, Hannibal. What are your thoughts on this?
Well, whilst I think Hannibal is a particular taste that might not suit all, we felt that it played an important role in raising awareness of the condition. I should also say the Hannibal team and Gaumont TV who produce the show have been super supportive of us in recent weeks and in particular in the lead up to World Encephalitis Day on the 22nd February (www.worldencephalitisday.org).
What’s a common misconception about this topic that you’d like to clear up?
The misconception that people still have Encephalitis when in fact it is the subsequent brain injury… brain injury is a consequence of encephalitis. The ongoing sequelae that people can experience is not usually as a result of an acute illness (i.e. they are not continuing to experience encephalitis).
Your book includes 8 stories from survivors, family members and the bereaved. How will these narratives influence neurological ill health and disability, in particular brain injury?
That’s a difficult question to answer! My hope is that they will generate greater understanding of the condition and its consequences, along with how people make sense of, and cope with, the condition and its legacy.
Have you read any Routledge books? If so, which your favorite Routledge book at the moment?
I really like this current brain injury survivor series edited by Professor Barbara Wilson – everything from traumatic brain injury through to prosopagnosia is covered.
Do you have any events lined up?
Yes, our Society has an annual programme of events for those affected by the condition. In relation to the book however we have two main VIP launch events in April and June, the latter sees the book launch being hosted by The Guardian. These will include readings, book signing, some bubbles and nibbles. Some of the contributors to the book will be at them too and I will be so excited to see them again, and some for the first time!
We just published your book, what’s next in the pipeline for you?
We are hoping to take the book to the US and Australia if we can generate sufficient support and I am just about to visit India to better understand the impact of Japanese Encephalitis on the communities over there, and see how our Society can help in any way. I think Routledge and I have also discussed the potential for another book…but that’s a secret for now….
"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
Ava Easton makes a compelling case for the use of narratives in helping survivors, their families and health care practitioners to understand what it means to cope with the consequences of encephalitis. But the case is really made for her by the survivors of encephalitis and the families who tell their stories with such clarity, insight and dignity.b – Professor Jon Evans, University of Glasgow (read the full review, here.)
"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
Encephalitis is inflammation of the brain. The inflammation is caused either by an infection invading the brain (infectious); or through the immune system attacking the brain in error (post-infectious or autoimmune Encephalitis). 6000 people in the UK are diagnosed each year many more worldwide, there is a high mortality rate and for that do survive they are often left with an acquired brain injury the severity of which can vary.
Encephalitis is a thief, it robs people of their loved ones and of their lives they once knew. The Encephalitis Society is the only resource of its kinds in the world and our vision is to live in a world where Encephalitis is as rare as it possibly can be given its eradication is unlikely, and that those affected and their families, have access to early diagnosis, excellent management of their condition, timely access to rehabilitation and other forms of social support.
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…
Paperback – 2016-02-29
After Brain Injury: Survivor Stories
February Authors of the Month: Barbara A. Wilson, Samira Kashinath Dhamapurkar and Anita Rose
January Author of the Month: Viren Swami
December Author of the Month: Mark Batey
November Author of the Month: Philip Wylie
* Discount is only available on print books purchased from www.routledge.com, and cannot be combined with any other offer or discount. Valid until the 31st December 2016.