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Buying books Support us by buying via our link Read more . . . |
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The following books have been written by people who have personal experience of an acquired brain injury, not necessarily from encephalitis, but none the less valid.
Emma's Story – A Journey through Encephalitis
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An initial copy of the DVD is available at no charge to Encephalitis Society Members; however we do ask that you pay the postage. Additional copies and copies for anyone not directly affected by encephalitis or living outside the UK and Republic of Ireland are £7. To become a member of the Society, please download and complete the membership form at the top right of this page. |
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Different Dads
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Each of the stories relay the dads’ journeys from the first minute that they discovered something was not as it should be, and indeed how one man made it his mission to adopt a little boy who had multiple complex needs. Their accounts are truly open, putting their cards on the table for all to see, giving you a heartfelt look into how it is to be a father of a child with disabilities. The book however is not just about this role, but also about how they are perceived by those around them and how in some cases they are left out of the equation because dads can’t be seen to falter. In relaying their experiences we become privy to a wealth of tips and ideas on how to approach service providers and obtain financial support. They also place great emphasis on the value of support groups and how empowering the information gained can be. Above all they speak positively for their futures and their unshakable devotion to being very different dads. ISBN: 987 1 84310 454 4
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Forever Today
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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. |
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Awakenings
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Bringing Up a Challenging Child at Home
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Healing Lazarus
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The illness follows a sequence that is familiar to many other encephalitis victims – flu-like symptoms, high fever and coma followed by the long and painful process of recovery. Richmond sees his suffering through Buddhist eyes which does not help him very much at first. In fact he feels ‘intensified distress’ when he finds he is not calm enough to meditate. Later, when he is stronger, his faith helps him to cope with the challenges of rehabilation and to move from feeling suspicious of his care-givers to remembering, ‘how important it is to allow others to step in and hold us, support us and allow us to accept whatever our fate will be.’ Lessons learnt about suffering are an important part of this journey. Change and disaster are not cruel tricks of fate but a fundamental part of human life, a Buddhist truth that Richmond had understood in theory but which now becomes real. While he is still weak, he is hoping for the opposite – ‘for permanence, safety and for the hope that nothing else would go wrong.’ Richmond says that his healing experience was obviously coloured by his personal history and that someone else would have a different story to tell. That may be so, but as a fellow survivor of encephalitis his story often reminded me of feelings I had almost forgotten. I was particularly struck by his intense feeling of grief, fear and isolation when he is, ‘overwhelmed with sadness over my lost identity and shattered sense of self’, and he mourns for the person he had once been. Brain disease and recovery from it are not often written about by the sufferer because their memory is affected and bound to be confused. This is a clear and memorable record of a devastating illness in which feelings of fear, isolation, sadness, despair and gratitude are vividly described. One of his doctors said Richmond was ‘unusually perceptive’, pointing out that most patients, ‘don’t recognise their mental confusion till it lifts, and then they are amazed.’ Unlike them, he is aware of it while it is happening At times, there is something of the over-achiever of the author’s pre-illness life in this story. Not content with having survived, he is at pains to point out how much he has learnt and how much he is changed by his illness – a ‘better’ person, ‘more humble and compassionate’ who now has a deeper understanding of his faith and of the ‘fragility and preciousness of life.’ Following encephalitis, he was afraid, helpless and totally dependent on his wife and carers, and this led to what he describes as a ‘gradual opening of the heart.’ He learns a painful lesson in patience, humility and compassion, an experience he describes as ‘inspiring’. On the whole, so this book. |
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In the Shadow of Memory
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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. |
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I’ll carry the Fork! recovering a life after brain injury
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If these quotes ring any bells with you then you may benefit from buying it: ‘I felt like an impostor. I feared that the longer this new person leased my body, the closer she came to owning it.’ ‘My attorney wrote me a letter and likened my injury to s symphony orchestra. He said the tests could tell you if all the trumpet players were present or if the string section was accounted for, but they could not tell you how well the musicians communicated with the conductor, or how each individual was playing. He explained that with a head injury, all the musicians might be present, but some might not be playing, or not in the right key. Finally, I was starting to understand. I imagined that half my orchestra was playing Beethoven and the rest of those lazy b$**”!^s were in the dressing room eating pizza.’ |
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Living With Brain Injury
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Over My Head
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Out of It
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Me Myself My MemoriesBy Gillian Shaw Gillian has produced a collection of drawings, writings and photographs from her childhood through to the present day. They describe her journey before during and after her experiences of encephalitis - a memoir of a fractured self, for want of better words. There is no doubt that Gillian’s book has been a cathartic process for her – her visual imagery and writings are reflective of her experiences and feelings. This book would allow people a glimpse into her world although I am unclear about its wider appeal. People with encephalitis who have visual disturbances might find some of the pages difficult to read where there is both text and imagery. In addition I would urge a word of caution with regards Gillian’s remarks about encephalitis. Encephalitis is not a virus as she describes. Encephalitis is inflammation of the brain, usually the result of a viral infection. There is no doubt that Gillian is very talented and such a visual image of people’s difficulties following encephalitis is a useful tool in the campaign to raise awareness. Anybody interested in obtaining a copy should email the office and we will pass on your requests to Gillian. |
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Rachel's StoryOne families story of the death of their child This book is a very moving account of how a family coped with the death of a child. In the beginning we are told of the special memories that surround this wonderful girl Rachel. How she enjoyed her dancing, friendships and ultimately her family. All is looking good until the day Rachel suddenly became ill. Mum tells through the pages their hopes, fears and finally, realisations as the diagnosis of encephalitis is confirmed and they are told Rachel is losing her fight against the disease. We are given some insight into sadness at the time of Rachel’s death and touched by the care given to her at every moment of her illness. |
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The importance of unity within the family and their faith is apparent throughout the book. As they shared this difficult time between them as a family and it is delivered again for anyone who reads this book. 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 been there too. Published through Veritas. ISBN 1-85390-677-8 |
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Time out of Mindby Jane Lapotaire Jane Lapotaire is one of the UK’s most distinguished actresses, winning many awards for her TV and theatre work. In year 2000 Jane collapsed having suffered a cerebral haemorrhage. This is Jane’s story of recovery from the subsequent brain injury that the haemorrhage and invasive surgery left her with. Despite the fact that her damage was not caused by Encephalitis I heard nearly every one of you in her words time and time again. What is truly remarkable about this book above any other I have read is her insight into her difficulties and her ability to verbalise those insights. Jane also had remarkable insight and retained ‘islands of memory’ from her acute stage of illness, and her post-operative confusional state. Jane also manages to describe the actions and words of the other person she has become with astonishing clarity. She is honest about the effect this has had not only on herself but also on her relationships and friendships that became casualties of Jane’s recovery. Jan also accurately describes her battle to receive services in and her disgust at how little neurological help there is available in the UK. If you have been affected directly or indirectly by neurological illness and don’t want to feel so alone then READ THIS BOOK. If you are a professional and want to understand how very hard it is for people in recovery then this is the place to start. Put to one side all the textbooks and academic research - this book provides a lesson in humanity. |
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Weathering the Storms – living with Epilepsy
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Where is The Mango Princess?
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Aunt Killerby Jeneva Johns reviewed by Sue McSwiney Aunt Killer is a fast-moving suspense novel covering just over a week in the life of its heroine, Eva. Just four pages into the book we already know that Eva is ill but the doctors don’t know what is wrong with her, her short-term memory is failing, that she intends to take out a restraining order against Jim who wants to marry her and she is shot in the arm and run off the road by someone in a red sports car. The pace is relentless. Eva leaves Ohio to escape not only the obsessive Jim but also her niece who often comes to her for financial help. She returns to Florida, searching for her childhood home where she hopes she will be safe, but her failing memory prevents her recognising where she is. She falls asleep on the sand and is found by Mark, an ex-Secret Service agent who takes her to his home. Eva reminds him of his sister who was murdered two years earlier, for which he feels responsible. Determined to protect Eva from further harm and to find out who her would-be killer is, Mark inadvertently leads the killer to Eva with dramatic consequences. Eva’s unfolding misfortunes are piled on, thick and fast. Someone in full health would be hard-pressed to survive the catalogue of disasters that befall her, never mind someone who is suffering from encephalitis. Apart from the car accident and the shooting, neither of which she remembers, she is chased along the beach by boys in a car, one of whom has a gun, she almost drowns when she rescues two children from the sea, her cat has been killed by ant poison, she sees another cat she has befriended killed by a lorry and her antibiotics are tampered with. Much of the mystery is built up through Eva’s memory loss as she has often forgotten or is unsure of what has happened so she is unable to give information to Mark, her protector. But Aunt Killer could have been almost the same book if the heroine had not been ill with viral encephalitis because Eva’s memory loss could just as easily have been caused by the physical and mental trauma of the car crash and shooting. Concussion and viral encephalitis? It’s too much. “Eva could not remember her auto accident. The concussion from her head hitting the steering wheel had erased that fragment of her memory; a common condition in blunt head trauma. More critical was the fever from the viral encephalitis raging in her brain. Her short-term memories faded fast in the growing fog of the illness clouding her mind.” Jeneva Johns suffered from viral encephalitis herself and wrote the book as therapy while she was recovering. Throughout the book she explains what the illness feels like from Eva’s point of view, and gives factual information about the illness via Eva’s doctor whose son died from the illness, Mark’s mother who is a nurse and Mark’s search of the Internet. It is always informative, but with so many other disasters befalling our heroine, the devastating effect of the illness is diluted and therefore less hard-hitting than it might be. |
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Last modified: 3 June 2008
