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The information resources featured in this section are intended to provide accounts of personal experiences of Encephalitis. They contain information that is the opinion of the author and not necessarily that of any health care provider or The Encephalitis Society.
If you would like your book to be included here please send us a copy of the book and we will endeavour to review it. We cannot guarantee that your books will be displayed here, as we have strict criteria which need to be met before we recommend the book.
For more information please contact The Encephalitis Society.
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 people: professionals working in neurology and rehabilitation, and also to and survivors of encephalitis, their families, and carers.
"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
"This book is equally relevant to survivors, family members, carers, neurologists, psychiatrists, nurses, relatives and even disinterested readers. Ava Easton has brought the same demotic wisdom to this book that she exercises as the inspirational CEO of The Encephalitis Society. Over the years she has taken what was a deadly but obscure illness out to the world, and explained it simply and cogently to people who had no reason to have thought about it before, and to experts who had almost certainly never thought about it in those terms before.
The Encephalitis Society has brought together top professionals such as neurologist Professor Tom Solomon with survivors such as me, bereaved family members, and those unfortunate enough to still be living with the after-effects of encephalitis to create a wonderful, and strangely uplifting extended family. There is no hierarchy in The Society – but if Dr Easton had to choose my guess is that she’d rather hear first from the survivors, then the experts.
She has brought the same philosophy to Life After Encephalitis. There is a useful explanation of the different forms of encephalitis, prevention measures, experts have their say, but at the heart of the book is a series of beautifully written, desperately moving first-hand accounts from those who have lived with the illness". – Simon Hattenstone, The Guardian
"Encephalitis is undoubtedly a thief, and Easton does an excellent job at explaining why." - Jules Morgan, The Lancet Neurology. Click HERE to read the full review in The Lancet Neurology.
You can buy your copy of the book here: Routledge and you will get a 20% discount available with the code: FLR40
You can buy a limited edition signed copy of the book from our Shop.
Identity Unknown gives an exceptional, poignant and in-depth understanding of what it is like to live with the severe after-effects of brain damage caused by a viral infection of the brain. It tells the story of Claire, a nurse, wife, and mother of four, who having survived encephalitis, was left with an inability to recognise faces – a condition also known as prosopagnosia together with a loss of knowledge of people and more general loss of semantic memory
Part One describes our current knowledge of encephalitis, of perception and memory, and the theoretical aspects of prosopagnosia and semantic memory. Part Two, told in Claire’s own words, is an account of her life before her illness, her memories of the early days in hospital, an account of the treatment she received at the Oliver Zangwill Centre, and her description of the long-term consequences of encephalitis. Claire’s profound insights, clear writing style, and powerful portrayal of her feelings provide us with a moving insider’s view of her condition. These chapters also contain additional commentary from Barbara Wilson, providing further detail about the condition, treatment possibilities, potential outcomes, and follow-up options.
Identity Unknown provides a unique personal insightinto a condition which many of us have, for too long, known too little about.It will be of great interest to a broad audience including professionals working in rehabilitation settings, and all those who have sustained a brain injury, their families and carers.
The book is available from Routledge
"Catherine's story is important. It is her narrative, and important for that alone, however it is important for a number of other reasons. It is an honest and candid account of her outcomes following Encephalitis and the impact it has had both upon her and her family. It will help others to feel better understood and less alone. It also demonstrates that the outcomes of Encephalitis, in those likely to be considered mildly or moderately affected in a clinical sense, can in fact find life on a day to day basis extremely difficult and at times hopeless. The labels we rely upon, and to some extent impose upon survivors of this devastating condition can, at times, serve only to confuse and perhaps dismiss their experiences.
We have called Encephalitis 'A Thief' for many years at The Encephalitis Society. It robs people of abilities we take for granted every day: thinking, memory, concentration, inhibitions. For some families it robs them of their loved one and even in those families where the person affected survives, it can rob them of the person they once knew.
It is my pleasure to know Catherine both as a member of our Society and as one of our dedicated and highly valued regional volunteers. The ability to write is a gift and this book is a gift to the many survivors (and their family members and friends) who will read it and will feel someone does understand, and they are not so alone."
Dr. Ava Easton, Chief Executive, The Encephalitis Society
"In November 2013 my husband, John Coates, fell ill with a mysterious disease. Its symptoms included sudden loss of memory, seizures, hallucinations and delusions. After four months this was diagnosed as a rare form of auto-immune encephalitis ( VGKC ) and after medication started he began to improve. Luckily, it is possible to recover completely from this particular encephalitis and this has happened. John is well again. These poems and nine others were written after he started to respond to the medication. They were published as a pamphlet Crazy Days by Wayleave Press. Carol Ann Duffy, the Poet Laureate, who has known John for many years, said of the pamphlet “It’s one of the best things I’ve read all year”. Carole Coates
Crazy Days 7
"What can I do with a man whose half-hour memory
bewilders us both? I’ve stopped saying
do you remember, because the rind of sadness
forming round you thickens every time you say no
and I can’t imagine what it’s like to be you
stalled in a short-term world of no conclusions.
So we try the Museum, away from the wind
and the bitter sky. You used to love this place
and now you look at every tableau, read each notice,
examine how a patch of earth and rock became
a settlement, a fort, a town, a city and this will be
forgotten, this will be erased, before you leave.
You stop in a trench with the King’s Own Regiment,
their Great War dugout. You watch an officer
transfixed among sandbags. He’s not writing
with the pen he holds, those reports he’ll never
send. That enamel mug of tea he’ll never drink.
This is a moment stilled and always happening.
At lunch you suddenly say I’ve got to get back now.
I’ve got to give that lecture and you name a place
you used to teach in forty years ago. But you’re retired
I say. But how? What’s happening to me?
and, like a child, you fall asleep,
pudding half-eaten, spoon clutched in your hand"
In the summer of 2011, aged only 22, Jodi Ann Bickley contracted a serious brain infection that would change her life forever. Jodi had been performing at Camp Bestival on the Isle of Wight. Returning with pockets full of glitter, and her favourite bands' songs still playing in her head, She thought the happy memories would last forever. A week later, writhing in pain on the doctor's surgery floor and unable to put the pain she was suffering into words, Jodi found out that she had been bitten by a tick and contracted a serious brain infection.
Learning to write and walk again was just the start of the battle. In the months that followed Jodi struggled with the ups and downs of her health and the impact it had on her loved ones. Some days the illness was too much for Jodi to bear and she found herself wondering whether she could go on. She had two choices: either to give up now or to do something meaningful with the time she had been given. Jodi chose the latter. This is the story how she turned her life around, and in doing so, touched the lives of millions.
ONE MILLION LOVELY LETTERS is one woman's inspirational journey to recovery, and is a witty and uplifting testament to the power of words to heal heart and mind.
Click here to buy One Million Lovely Letters from Amazon UK.
'My first serious blackout marked the line between sanity and insanity. Though I would have moments of lucidity over the coming days and weeks, I would never again be the same person ...'
Susannah Cahalan was a happy, clever, healthy twenty-four-year old. Then one day she woke up in hospital, with no memory of what had happened or how she had got there. Within weeks, she would be transformed into someone unrecognisable, descending into a state of acute psychosis, undergoing rages and convulsions, hallucinating that her father had murdered his wife; that she could control time with her mind. Everything she had taken for granted about her life and who she was, was wiped out.
This is Susannah's story of her terrifying descent into madness and the desperate hunt for a diagnosis, as, after dozens of tests and scans, baffled doctors concluded she should be confined in a psychiatric ward.
A gripping medical mystery with a unique personal voice, Brain on Fire is also the story of how one brilliant man, Syria-born Dr Najar, finally proved – using a simple pen and paper - that Susannah's psychotic behaviour was caused by a rare autoimmune disease attacking her brain. His diagnosis of this little-known condition, anti-NMDA-receptor autoimmune encephalitis, saved her life and possibly the lives of many others.
Susannah Cahalan is a reporter on the New York Post and the recipient of the 2010 Silurian Award of Excellence in Journalism for Feature Writing. Brain on Fire is a searingly personal yet universal book, which asks what happens when your identity is suddenly destroyed, and how you get it back.
"This is a remarkable book about a relatively newly identified type of Encephalitis called NMDA-receptor Encephalitis. Susannah survives not only this devastating condition but also not uncommon mid-diagnoses, and their potential for admission to psychiatric institutions. Susannah recovers well thanks to the astute observations and ongoing professional development of a doctor, one of many in a team trying to diagnose and manage this young woman spiralling into a world of madness and mayhem.
Susannah’s book is the first account (to my knowledge) of this type of Encephalitis. She successfully interweaves her own narrative with the observations of others and the expert and clinical explanations of her condition as would be expected of a journalist and writer of her calibre. This results in a book that makes us empathise with her experiences but also leaves us with an evidence-based education in relation to this condition.
The book is an absolute must-read for anyone affected, their families and friends but also for professionals working in, or with an interest in neurology. Reading this book will undoubtedly save lives and prevent inappropriate admissions to psychiatric units of people whose condition is neurological and not psychiatric. The book does of course leave us wondering how many un-diagnosed NMDA-receptor Encephalitis patients remain in psychiatric institutions? Are you really sure that patient protesting their innocence or pleading sanity really is suffering a Psychiatric disorder or is that glimmer of sanity you’ve occasionally glimpsed another Susannah Cahalan?"
Review By Ava Easton, CEO of The Encephalitis Society
“Susannah’s poignant story of her illness and eventual recovery is very readable and will appeal to the general reader. More importantly for professionals in the medical field, the book also offers valuable insights into a rare and sometimes fatal condition, which will alert them to the dangers of misinterpretation of patients’ behaviour. This book is written by an exceptionally good journalist and will appeal to all those who want to gain a better understanding of what is required to obtain a proper diagnosis and appropriate treatment for a terrifying illness.”
Barbara A Wilson, OBE, Neuropsychologist and President of The Encephalitis Society
“It seems perhaps wrong somehow to say that this is the most thrilling book I've read in ages, an actual page turner that I literally sat and read until I'd finished. A writer that gives it to you straight from the heart and soul of her nightmare. No punches are pulled and no horror un-named. It's terrifying, heart breaking and inspiring in equal parts.”
Mathew Bose, Actor, Artist and Ambassador of The Encephalitis Society
Three years after he was diagnosed with Encephalitis, Van Welie knows what the physical, mental and social impact of this illness is. He bundled his story – and the stories of friends, colleagues and health professionals – in God’s Humor. My life after encephalitis.
If you would like to order the paperback or the electronic version of the book please email the author Marius van Welie at email@example.com
There are no costs involved other than those associated with postage, but Marius asks very kindly for a donation to be sent to The Encephalitis Society.
At 18,000 miles away from home, a business professional delivers a polished presentation to a group of executives.
And within two hours, she forgets how to walk. Talking becomes too strenuous. She is struck by an odd series of neurological deficits that baffle her and a dozen doctors ... for 27 months.
Brain Wreck is a must read for anyone who has witnessed the frustration of a mysterious illness. This is a story of determination and an unrelenting journey to save one's mind. With humor and unabashed honesty, the author restores a shattered spirit while striving to be "normal."
"In this memoir, the author reports her experience with encephalitis, which went misdiagnosed for 2 years and 1 month (and 28 chapters). After such a delay, encephalitis obviously remains as a “strong hypothesis,” but no etiological diagnosis can be assessed.
Readers should be aware that this book is not a scientific report about encephalitis. This book is from the patient’s point of view, describing her relationship with the medical world, and her life when she had to face sequelae nobody could explain nor manage or cure, as the diagnosis was not made.
Nevertheless, physicians have much to learn from this report: the author describes the disease from the inside, using layman’s terms to report the symptoms, the distress when the diagnosis is uncertain, the anxiousness when asking about prognosis. This description is often humorous, but there are some strong sentences: “Please speak English,” she says when a physician tries to explain physiopathological features. In fact, we (physicians) have to admit that it is much more comfortable for us to speak our “medical language” rather than an understandable one. A mix of laziness (to explain something to patients is energy- and time-consuming) and willingness to keep our patients under our power could explain this, as well as our own distress to be unable to propose any treatment to try to improve the medical condition.
This patient’s testimony raises many questions about encephalitis and its management. It is also a lesson for physicians,with the hope that we improve our behaviour toward patients, having read their feelings and gained some understanding".
Review by Gary P. Wormser “Infectious Diseases Advance Access” published September 20, 2013
Available to buy from Amazon
Read more about the book and the author on Becky Dennis' website
Emma's Story- A Journey Through Encephalitis highlights the unusual problems encountered by one young woman in her determined efforts to achieve independence.
It is a story of great courage- not just on Emma's part but on that of the whole family.
It will give hear to others on a similar journey, and should interest professionals in any sphere connected with damage to that most delicate of organs- the brain
Available from The Encephalitis Society online shop
For Lewis Richmond, overcoming a swift and devastating brain disease was only the beginning of an intense, protracted journey of recovery. But the Buddhist teachings that sustained him throughout his adult life would prove essential in guiding him back to wellness -- and toward rebirth and transformation.
In Healing Lazarus, Richmond shares the lessons he learned and the wisdom he won in sickness and in health. His words of love, hope, and courage are as inspiring as they are true. Illuminating from the first page to the last, Richmond's memoir is an affirmation -- and a celebration -- of life, and a testament to the human spirit.
Available to buy from Amazon
Aged nine Simon Hattenstone one day woke up with a headache. By ten he had lost half his body weight, talked baby talk and looked retarded. The medical profession labelled him a malingerer. When he resurfaced it was to an alien environment every bit as terrifying as the one he'd just escaped from.
"Out of It describes three harrowing years, from nine to 12, when Hattenstone had encephalitis, a raging infection of his brain that probably developed from something as mundane as a grazed knee. Doctors dismissed his condition as a cold, flu and then, when he didn't recover, as malingering and, eventually, as mental illness.
The book's passionate tone is shocking, even more so for those who know the writer as so laid-back to be almost comatose. "I was thinking quicker than I could type - it was like a haemorrhage, I couldn't keep pace with my thoughts," he says. "I wanted it to sound like a kid writing it, and so it was rushed and angry."
The Independent, 16 September 1998
Available to buy from Amazon
In December 1988 Floyd Skloot was stricken by a virus that targeted his brain, leaving him totally disabled and utterly changed. In the Shadow of Memory is an intimate picture of what it is like to find oneself possessed of a ravaged memory and unstable balance and confronted by wholesale changes in both cognitive and emotional powers. Skloot also explores the gradual reassembling of himself, putting together his scattered memories, rediscovering the meaning of childhood and family history, and learning a new way to be at home in the world. Combining the author’s skills as a poet and novelist, this book finds humor, meaning, and hope in the story of a fragmented life made whole by love and the courage to thrive.
"Floyd doesn’t explicitly say he had encephalitis, however I checked this out with him and he confirms it is encephalitis he is referring to when he describes ‘a virus that targeted his brain’.
This book is a candid memoir of living with a shattered memory. There is no doubt that his book is an inspiration to those who may have been similarly affected and indeed their families. Floyd offers hope and is incredibly philosophical in his approach. He states ‘A process had begun by which I needed to redefine myself, to construct a new sense of who I was and how I dealt with the world as an intellectual shadow of my former self’ Readers will be heartened to monitor his progress... ‘I have changed. I have learned to live and live richly as I am now’.
Unfortunately Floyd often refers to his ‘dementia’ which for me, and many UK readers, suggests a progressive decline. It is important that readers understand that memory problems following encephalitis are not normally progressive in nature.
My only other criticism is the time he takes midway during the book to recount his family background and the life, in particular of his mother. For me this did not add to the book in any significant way and I would rather have heard more about his experiences and feelings in terms of the difficulties he has been left with.
However, with Floyd’s level of difficulties it is a miracle that he has written a book, not to mention one that is so articulate and considered in it’s approach. There is no doubt this book will add significantly to personal accounts of encephalitis and its consequences, and brain injury literature in general."
Review by Ava Easton, The Encephalitis Society, 2004
Available to buy from Amazon
Awakenings--which inspired the major motion picture--is the remarkable story of a group of patients who contracted sleeping-sickness during the great epidemic just after World War I. Frozen for decades in a trance-like state, these men and women were given up as hopeless until 1969, when Dr. Oliver Sacks gave them the then-new drug L-DOPA, which had an astonishing, explosive, "awakening" effect. Dr. Sacks recounts the moving case histories of his patients, their lives, and the extraordinary transformations which went with their reintroduction to a changed world.
Available to buy from Amazon
Clive Wearing has one of the most extreme cases of amnesia ever known. In 1985, a virus completely destroyed a part of his brain essential for memory, leaving him trapped in a limbo of the constant present. Every conscious moment is for him as if he has just come round from a long coma, an endlessly repeating loop of awakening. A brilliant conductor and BBC music producer, Clive was at the height of his success when the illness struck. As damaged as Clive was, the musical part of his brain seemed unaffected, as was his passionate love for Deborah, his wife.
For seven years he was kept in the London hospital where the ambulance first dropped him off, because there was nowhere else for him to go. Deborah desperately searched for treatments and campaigned for better care. After Clive was finally established in a new special hospital, she fled to America to start her life over again. But she found she could never love another the way she loved Clive. Then Clive's memory unaccountably began to improve, ten years after the illness first struck. She returned to England. Today, although Clive still lives in care, and still has the worst case of amnesia in the world, he continues to improve. They renewed their marriage vows in 2002.
This is the story of a life lived outside time, a story that questions and redefines the essence of what it means to be human. It is also the story of a marriage, of a bond that runs deeper than conscious thought.
"Clive is a world famous musician and scholar on the work of the Renaissance composer ‘Lassus’. He is a workaholic, and perfectionist and Deborah and Clive mean everything to each other. Sadly Clive develops Herpes Encephalitis, and despite being treated on the then new drug, Acyclovir, he sustains significant injuries to the parts of his brain responsible for memory, among other facets of his personality. The Acyclovir probably saved his life however it was too late to save his memory, which is virtually completely wiped out. Clive is left with no capacity to remember anything and no capacity to relearn. He constantly thinks he is waking every few moments and our witness to this torture is heartbreaking. Deborah takes us on their journey and the many hurdles socially, politically, and emotionally that she manoeuvred, both with and without Clive during their 20-year journey to the present day. Somehow Deborah and Clive eventually build lives together, yet separate from each other in order to bear the legacy left by the Herpes Virus. However one thing never changes during this epic journey and that is Clive’s enduring and passionate love for Deborah.
This book is an emotional journey but also an educational one and socially documents some of the movement within brain injury services during the last 20 years. A must read!
Review by The Encephalitis Society,2005
Available to buy from Amazon
Rachels Story is an honest and moving account of how one family dealt with the death of a child. It begins with some special memories of Rachel and goes on to describe what happened to her from the time she first got sick, to her stay in Limerick and Temple Street Hospitals and finally her death. The effect that her funeral had on the family and the way they coped with this traumatic time is also dealt with. Finally, the journey that the family have made together following the loss of a sister and daughter and their acceptance that time moves on, is movingly recounted for the reader.
Rachels Story does not provide any magic solutions to grief, instead it reaches out a supportive hand to other heart-broken mothers and fathers and lets them know that they are not alone as they pass through the sad and lonely stages of the loss of a child.
"This book is the very moving account of how a family coped with the death of their child. In the beginning we are told of the special memories that surround Rachel - how she enjoyed dancing, friendships and most of all, her family. The future is bright until Rachel suddenly becomes ill. Mum recounts their hopes, fears and realisation as the diagnosis of encephalitis is confirmed and they are told Rachel is losing her fight against the disease. We cannot fail to be touched by the care given to Rachel at every moment throughout her illness, and we are given privileged insight into the family’s private coping at the time of Rachel’s death.
The importance of unity and faith within the family is apparent throughout the book, as they share the difficult times. Acknowledgement for the need to move on is given through the fond memories they have and hold dear. For anyone who has lost child or sibling the book makes no claims that the feelings of loss will go away forever but it does offer support by saying we know the path you have walked and the isolation felt, because we have walked that path too."
Review by Jon Ainley, The Encephalitis Society, 2005
Available to buy from Veritas
This is a very human and raw account of one couple’s fight with encephalitis.
In this case the cause is voltage gated potassium channel complex antibody associated limbic encephalitis (VGKC complex antibody E).
It is a wife’s account of her husband Jose’s battle with the condition.
In particular it illustrates their love for each other and their frustrations: it reflects the length of time some of these auto-immune encephalitides can take to manifest to the point where diagnosis is clearer. Author Crystal Lynn knows Jose is so very poorly – he keeps being admitted, discharged and re-admitted to emergency rooms. Yet a diagnosis is not forthcoming. During all this Crystal Lynn is dealing with her own disability which selflessly she never really discloses or focuses on in the book. She is also caring for her mom who has Alzheimer’s. She demonstrates carer-burden so well and yet so simply when she writes:
“I felt like I was in the abyss and was not going anywhere, anytime soon. I was feeling so sick that day. I had a headache, an ear ache, a toothache, and an abscess in my mouth too. Boy, I had to take one thing at a time, or I was going to lose it.”
The book also illustrates the challenges in treating autoimmune encephalitis, with no ‘one-size-fits-all’ treatment for patients affected by this challenging condition.
The book concludes whilst Jose is still undergoing treatment. Crystal Lynn closes the book with her love for Jose, something that has been a mainstay throughout the book:
“I kiss and hug Jose every day, so many times, one cannot count. I ensure that I treat him like a king. If he were to die tomorrow from this rare disease, he could honestly say, ‘My wife truly did love me,’ and I would respond ‘Que duermas con los Angelitos.’”
And if you want to know what that means then buy the book to find out!
(Review by Dr Ava Easton, Chief Executive of The Encephalitis Society)
Click HERE to buy The Quiet Storm by Crystal Lynn
The Encephalitis Society is the operating name of the Encephalitis Support Group which is a registered Charity and Company Limited by Guarantee.
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