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by Stephen Weatherhead and David Todd
This book brings together narrative approaches and brain injury rehabilitation, in a manner that fosters an understanding of the natural fit between the two. We live our lives by narratives and stories, and brain injury can affect those narratives at many levels, with far-reaching effects. This book explores ways to create a space for personal stories to emerge and change, whilst balancing theory with practical application. Despite the emphasis of this book on the compatibility of narrative approaches to supporting people following brain injury, it also illustrates the potential for contributing to significant change in the current narratives of brain injury.
Ava Easton, The Encephalitis Society Chief Executive and Karl Atkin, professor at York University have written the first chapter of this book called "Understanding Narratives: A Beacon of Hope or Pandora's Box". This chapter considers the use of narratives by people who have been affected by neurological illness and disability and, in particular, their naturally occuring, organic generation of narratives rather than those created as part of a therapeutic intervention. The authors would like to thank , and dedicate this chapter to, the members of The Encephalitis Society, without whom this piece of work would not exist.
Available to buy from Karnac Books
This brochure covers a range of topics in acquired brain injury, its consequences and recovery. This booklet is provided here by kind permission of The Brain Injury Association of Queensland.
Read the full text here
Additional information can be found at www.synapse.org.au
Available to buy from The Encephalitis Society online shop
by Headway Ireland
The booklet was compiled by Headway Ireland staff with the help and advice of a panel of professionals and carers. Chapter headings include “Understanding”, “Coping with the Consequences”, “The impact on you: understanding your feelings”, “The impact on your family”, “Taking care of yourself”.
Available from The Encephalitis Society online shop
by Linda Clare and Prof. Barbara Wilson
A practical guide for people with memory impairments, their relatives, friends, and carers. This book is filled with strategies to enable people affected by memory problems and their families to achieve solutions to the problems caused and ultimately improve their quality of life.
The information resources featured in this section are intended to provide accounts of personal experiences of Acquired Brain Injury. 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
by Kika Markham
Corin Redgrave and Kika Markham shared a happy marriage, a love of acting and like many of the Redgrave acting dynasty, a passion for left-wing politics and activism. Much of this came to an abrupt halt when Corin sustained a serious heart attack in 2005 resulting in an anoxic brain injury. This event had a devastating impact on their lives and this book details their experience from Kika's perspective.
This book is passionately written and at times brutally honest. It contains Kika’s personal narrative and reflections of her marriage to Corin, the politics and passions they shared all beautifully interwoven with the playwright and thespian worlds in which both the Markham and Redgrave families inhabited. Diary entries from both Kika and Corin’s journals along with anecdotes and reflections by family members, close friends and colleagues, all serve to create a temporal and rich tapestry in which the author’s own narrative exists.
Kika wrote the book in the hopes it will help others similarly affected and to provide a better understanding of the impact of brain injury more broadly. The book achieves this and will appeal to patients and families alike as well as those professionals supporting them. It provides insight into the difficulties faced following brain injury and reminds people they are not alone. For professionals supporting them it demonstrates the ongoing difficulties and impact upon individuals and their families when people return home. In both cases this book describes the reality of brain injury, the tenacity of the human spirit, and the importance of never giving up.
The first part of the book provides context – exploring who they both were, their passions, their politics, their families, and the plays and playwrights with whom they worked. As part one closes we begin to learn about Corin’s deteriorating health. Part two opens in 2005 with Corin’s collapse and their struggle to understand what happened and how to find appropriate rehabilitation services. In the early stages of recovery Corin exhibits many of the typical symptoms frequently observed following acquired brain injury including agitation, anger, confusion, low mood, and disorientation. However it is his lack of insight, disinhibited behaviour and profound memory problems that cause them both the most anguish. Kika shares the depths of her despair and describes many feelings common to the partner of a brain injury survivor – frustration, anger, isolation, embarrassment, familial pressure, and asking who the stranger is that now inhabits their home? In coming to terms with the depth of his profound memory problems Kika asks the reader, “For what use are memories if they only exist for one person?” This second part of the book primarily contains diary entries during that time. There is little reflective narrative of what is clearly a deeply dark period – this in no way detracts from the great addition to the brain injury literature that this book makes, but it did make me wonder if at the time of writing this was still too painful to reflect upon in detail.
Despite his memory problems Corin does eventually return to work in a limited fashion. As a reader this was somewhat surprising. It is of course important to remember that improvements can be made, even where there is profound and apparently devastating injury. As a result this book is also a source of hope and inspiration for others similarly affected and those clinicians supporting them. Kika and Corin’s relationship is however changed forevermore and their parallel heightened states of anxiety emanate palpably through the pages of the book – Kika’s grief, guilt and resentment; Corin’s anger, confusion, and suspicion.
Whilst books of this nature are serious and deep there is an almost laugh-out loud moment when Kika implements her strategy to deal with one of Corin’s more disinhibited behaviours – I found myself wanting to cheer her when it worked!
Despite all this the couple ultimately find a way to ‘be together’, living in the moment and enjoying driving and the theatre – activities that for those moments in time allow them once again to be equals.
As the book drew to a close I was on a long train journey from Scotland to York. I knew I was soon to read of Corin’s passing and Kika’s grief. Lunchtime for me had long passed and I was hungry. However I could not interrupt my reading of their story to participate in something so self-centred as lunch after the journey I had been on with them both. Kika and Corin had drawn me into their world and it would have felt deeply disrespectful. As I turned the final pages and closed the book, I looked out of the carriage window. The sea was angry and the rain beat down. It seemed a fitting homage to a remarkable man and Kika, his wife, companion and champion. It is with Corin’s tribute to her that I end this review:
“To all in the world who listen and like to hear the truth – even if it is uncomfortable and painful – I am Corin…married to Kika…Redgrave. And that is my only claim to happiness. My dear, absolutely beautiful wife. Without her…I would have nothing. With her…I have…everything!!!”
Reviewed by Dr Ava Easton, The Encephalitis Society
Markham, Kika (2014). Our Time of Day: My Life with Corin Redgrave. London. Oberon Books., 2014. 206pp. £16.99 (hardcover) ISBN 978-1783191000
We have a limited amount of signed copies available to purchase at a special discount price from our online shop.
By Cathy Crimmins
Humorist Cathy Crimmins has written a deeply personal, wrenching, and often hilarious account of the effects of traumatic brain injury, not only on the victim, in this case her husband, but on the family.
When her husband Alan is injured in a speedboat accident, Cathy Crimmins reluctantly assumes the role of caregiver and learns to cope with the person he has become. No longer the man who loved obscure Japanese cinema and wry humor, Crimmins' husband has emerged from the accident a childlike and unpredictable replica of his former self with a short attention span and a penchant for inane cartoons. Where Is the Mango Princess? is a breathtaking account that explores the very nature of personality-and the complexities of the heart.
"Cathy’s life is changed forever when her husband is hit on the head by a speedboat whilst the family is on holiday. Cathy takes us on a journey filled with shock, denial, discovery and patience; from the scenes of the trauma, through coma, the many stages and facets of a severe brain injury through to finding a new way of living and her husband’s eventual return to a meaningful but very different life. This book made me angry, made me cry and made me laugh. Cathy is not too proud to let us in on the many mistakes she made and the absolute and sheer frustrations she faced and still does with her husband. She shares with us their young daughter’s struggle and pain to adapt to the new family difficulties and she also manages to give us an insight into the denial of her husband’s problems by many other family members. Despite having some good friends her isolation is at times tangible. She highlights for us the problems encountered with many professionals; but there are also some good tips and strategies for combating particular problems.
This book is an absolute must for anyone affected by brain injury and especially for any husband or wife with a brain injured spouse."
Review by Ava Easton, The Encephalitis Society, 2002
Available to buy from Amazon
by Claudia L Osborn
Over My Head is the powerful story of a warrior, battling her disability and motivated by a profound desire to beat the odds, restore her cognitive abilities and ultimately return to practicing medicine. She was able to put her life back on track with the help of the physical medicine and rehabilitation team.
Osborn’s gripping account begins first with her incessant denial of an impaired ability and the depression and frustration that follow when she attempts to return to her career and social life. With virtually no short-term memory and devoid of many cognitive skills, Osborn is forced to take notes on practically every occurrence in her life; her memory becomes a few shorthand notes scribbled on a pad.
After months of treatment by physiatry and allied rehabilitation specialists at the Head Trauma Program of New York University’s Rusk Institute, Osborn learns the magnitude of her injury and slowly overcomes the severe depression that accompanies her neurologic transformation. With the support of her family and friends new and old, she forges ahead despite very slow and painstaking progress. Osborn comes to grip with her reality and with much diligence learns to appreciate her newfound life and future.
If you want to buy the book or for more information about the book and the author visit www.claudiaosborn.com
by Jane Lapotaire
Who are you when your brain is not you?Jane Lapotaire is one of the lucky ones. Many people do not survive, let alone live intelligently and well again once they have suffered cerebral haemorrhage. In the long haul back to life - 'nearly dying was the easy bit' - she's learned much, some of it very hard lessons. Some friendships became casualties; family relations had to be redefined; and her work as an actress took a severe battering. The stress of living is felt that much more keenly when 'sometimes I still feel as if I am walking around with my brain outside my body. A brain still all too available for smashing by noise, physical jostling, or any form of harshness'. But she has survived and now believes it herself when people say how lucky she is.
This is a very moving, darkly funny, honest book about what happens when the 'you' you've known all your life is no longer the same you.
"Jane Lapobire is one of this country’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 everyone 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. Jane also accurately describes her battle to receive services 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."
Review by Ava Easton, The Encephalitis Society, 2003
Available to buy from Amazon
by Richard Hammond
In September 2006, Richard Hammond suffered a serious brain injury following a high-speed car crash. ON THE EDGE is his compelling account of life before and after the accident and an honest description of his recovery, full of drama and incident.
An adrenalin junkie long before his association with Top Gear, Richard tells the story of his life, from the small boy showing off with ridiculous stunts on his bicycle to the adolescent with a near-obsessive attraction to speed and the smell of petrol. After a series of jobs in local radio, he graduated to television and eventually to Top Gear. His insights into the personalities, the camaraderie and the stunts for which Top Gear has become famous, make compulsive reading. It was whilst filming for Top Gear that Richard was involved in a high speed crash, driving a jet-powered dragster. His wife Mindy tells the story of the anxious hours and days of watching and waiting until he finally emerged from his coma. In an extraordinarily powerful piece of writing, she and Richard then piece together the stages of his recovery as his shattered mind slowly reformed. The final chapter recounts his return home and his triumphant reappearance in front of the cameras.
"It has to be said I have reviewed and read hundreds of books on brain injury and for the most part have become a little immune to the impact of some. But every now and then a corker comes along and I write a review because I must share it with you all. This book is one of them! It is written by Richard and his wife Mindy and focuses largely on the run up to, and the aftermath of ‘the crash’. The book is clearly written by them – we all know Richard’s voice and his wicked sense of humour and when you read the book it is actually his voice speaking to you, which kind of personalises the book and draws you in.
In the section where Richard describes the crash I actually filled up with tears - there is no sensationalism, just the account of a man who believes he is about to die – it’s simplicity and its personal nature makes it extremely powerful in a way few writers successfully convey, let alone those who have struggled the path of brain injury.
The abject terror, honesty, and love shared by both Richard and Mindy in this book are quite something to behold. It is unusual for anyone to write their experiences so quickly after being affected by brain injury and it is this which adds greatly to the power of the book. Another strong point is the raw honesty of a man……much of the brain injury literature is driven by women…… There is no doubt in my mind that Richard and Mindy have added greatly to the brain injury literature and I heartily recommend this book to you. People will find this book of use at different stages in their journeys….however if your family is new to brain injury and you want confirmation that all the raw and crazy things that are happening to you right now are ‘normal’ for a brain injury journey or you simply need to know you are not alone then you may want to consider this book. If you are many years along the path then reading this book may simply validate your experiences, and act as a reminder that you are a member of a very special club and that you will never be alone.
If you are a brain injury professional then I suggest you have a moral obligation to read this book so that we can continue to raise awareness of the not so visible consequences of brain injury and I would like to ask you think about this question…..Richard (thankfully) had a good support team around him…..what of those that don’t?"
Review by Ava Easton, The Encephalitis Society, 2008
Available to buy from Amazon
by James Cracknell and Beverley Turner
Double Olympic gold-medal winner, James Cracknell. His story before and after his life-changing accident.
In October 2011 James Cracknell, two-time Olympic gold-medal rower and one of the greatest endurance athletes the world has ever known, suffered a seizure at home as his young son looked on in horror. A man who had known no limits, a man who had practically achieved the impossible, was now struggling to master life's simple challenges.
A year earlier, as James undertook yet another endurance challenge in Arizona, he was knocked off his bike by the wing mirror of a petrol tanker. It had smashed into the back of his head at high speed, causing severe frontal lobe damage. The doctors weren't sure if he would recover and, if he did, whether he would ever be the same again.
Touching Distance is an extraordinary, honest and powerful account as James and his wife Bev confront for the first time the lasting effects that the accident has had on their lives. It is the story of a marriage, of a family and of one man's fight back to be the best husband and father he can be.
Available to buy from Amazon
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