On The Edge: My Story
by Richard Hammond
Book Review By Ava Easton, Encephalitis Society Development Manager
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?
ISBN 0297853279
Stroke Survivor: A Personal Guide to Recovery
By Andy McCann
At the age of 37, Andy McCann was physically fit, strong and in good health. Then,
mid-way through instructing his weekly martial arts class, he experienced a stroke
and was rushed to hospital. Until then, the word 'stroke' had meant little to Andy,
and in this book he recounts the many difficulties in learning to live with his
new situation. Funny, poignant and informative, the book is not just a personal
story, but also offers a wealth of advice and information for anyone who wants to
know more about strokes. He explores a broad range of issues experienced by stroke
survivors, from the very practical considerations of managing financial security
and understanding medical approaches and terminology to the more personal challenges
of coming to terms with a new sense of vulnerability and dealing with the attitudes
of friends and family. The common thread throughout is Andy's insistence that he
will not be a 'stroke victim' but a 'stroke survivor', determined to live with his
new set of circumstances in a positive way.
This book is a compelling yet practical source of information that will be valued
by professionals and patients alike - whether a fellow stroke survivor, a concerned
family member or a health or social care professional working with stroke victims.
Andy McCann held the position of Assistant Headteacher at a secondary school in
South Wales when he suffered his stroke. In addition to teaching physical education,
he has competed internationally in karate and taught self-defence for many years.
In 2002, he was awarded ‘Master Instructor of the Year' by an International
Martial Arts Academy and was given an award in recognition of his outstanding contribution
to martial arts in the UK. Since his stroke he has retired from teaching and is
training as a clinical hypnotherapist and a neurolinguistic programming (NLP) practitioner,
and has established AMCAN Consultancy & Training Ltd which specialises in all
aspects of personal development and how to overcome limiting beliefs. He lives in
Cardiff, Wales, with his partner Anne.
Jessica Kingsley Publishers
ISBN-10: 1843104105
ISBN-13: 978-1843104100
Doing Up Buttons
By Christine Durham
I felt just like Alice in Wonderland. Did Lewis Carroll write this as an analogy
of what it is like to have head injuries? Alice fell down a rabbit hole. She passed
many curious things on the way down but was unable to stop to look or understand
what was happening…….Like Alice said when she met the caterpillar
‘I’m afraid I can’t explain myself, because I’m not
myself.’ I didn’t understand. Nobody understood. I needed desperately
to hear from another Alice who had been down the rabbit hole and survived.
Here is the guide from someone who has been down the whole. Doing Up Buttons is
Chris Durham’s extraordinarily courageous and uplifting story of the realities
of coming to terms with the lasting effects of head injury and grief at the loss
of the person she was. Christine’s recovery encompasses both deep despair
and firm hope as she discovers that recovery is a complex process and has more to
do with effort, acceptance, invention, love, understanding and relearning than physical
healing.
If you have ever felt sorry for yourself, felt that life is too hard, that you’re
ready to give up, this the book for you. Doing Up Buttons contains practical things
to apply in everyday life to help you make the most of what you’ve got.
Publishers: Penguin Books Australia Limited
ISBN-10: 0140262067
ISBN-13: 978-0140262063
Listening in the Silence, Seeing in the Dark: Reconstructing life after Brain Injury
By Ruthann Knechel Johansen
Traumatic brain injury can interrupt without warning the life story that any one
of us is in the midst of creating. When the author's fifteen-year-old son survives
a terrible car crash in spite of massive trauma to his brain, she and her family
know only that his story has not ended. Their efforts, Erik's own efforts, and those
of everyone who helps bring him from deep coma to new life make up a moving and
inspiring story for us all, one that invites us to reconsider the very nature of
"self" and selfhood.
Ruthann Knechel Johansen, who teaches literature and narrative theory, is a particularly
eloquent witness to the silent space in which her son, confronted with life-shattering
injury and surrounded by conflicting narratives about his viability, is somehow
reborn. She describes the time of crisis and medical intervention as an hour-by-hour
struggle to communicate with the medical world on the one hand and the everyday
world of family and friends on the other. None of them knows how much, or even whether,
they can communicate with the wounded child who is lost from himself and everything
he knew. Through this experience of utter disintegration, Johansen comes to realize
that self-identity is molded and sustained by stories.
As Erik regains movement and consciousness, his parents, younger sister, doctors,
therapists, educators, and friends all contribute to a web of language and narrative
that gradually enables his body, mind, and feelings to make sense of their reacquired
functions. Like those who know and love him, the young man feels intense grief and
anger for the loss of the self he was before the accident, yet he is the first to
see continuity where they see only change. The story is breathtaking, because we
become involved in the pain and suspense and faith that accompany every birth. Medical
and rehabilitation professionals, social workers, psychotherapists, students of
narrative, and anyone who has faced life's trauma will find hope in this meditation
on selfhood: out of the shambles of profound brain injury and coma can arise fruitful
lives and deepened relationships.
Publisher: University of California Press; 1 edition (March 22, 2002)
ISBN-10: 0520231147
ISBN-13: 978-0520231146
From Tragedy to Triumph: Journey back from the Edge
by Jessica Taylor
Jessica Elizabeth Taylor was born in Listowel, Co. Kerry, Ireland. She owned and
operated a Merle Norman Cosmetic Studio in Toronto until her tragic accident in
1969. Although suffering a severe brain injury that took years to overcome, she
now presents seminars and is President of her 'New Beginnings Foundation' on Vancouver
Island. She is affiliated with many head-injury support groups around the world
and has received extensive radio, print and TV coverage.
Jessica's accident and life struggle led to one of the longest court battles in
Canadian history; a battle marred by collusion and fraud, making both legal and
medical history. She wrote about the legal battle and her against-the-odds recovery
in an earlier autobiography, which she self published in Ireland. As a result, hundreds
of head-injured families turned to her for help. From this, she wrote her updated
story, From Tragedy To Triumph; Journey Back From The Edge. Her book includes a
Petition to world governments with ten articles for the betterment of people with
head and brain-injury. A heart-breaking reality known as the 'silent epidemic.'
Jessica is on a worldwide campaign to educate people and bring attention to the
plight of the head and brain-injured.
Publisher New Beginnings Foundation, ISBN 1-4196-9869-9.
www.jessicaetaylor.org
Cracked – Recovering
After Traumatic Brain Injury
by Lynsey Calderwood
'I didn't even recognize my own face in the mirror. Nothing felt right. Dazed. Paralysed
by fear, my first instinct was to run but I had nowhere to hide...Voices echoed,
ricocheting across the room. I wished they sounded familiar.'
At the age of 14, Lynsey Calderwood suffered a traumatic brain injury that left
her physically unmarked but destroyed her memory. Thrust back into an apparently
nonsensical world of which she had no recollection, Lynsey spiralled downwards into
depression and eating disorders as she became socially ostracized.
This is the story, in her own words, of Lynsey's quest to discover her identity
and, eventually, to come to terms with her disability. She faces devastating setbacks
and her sense of loss, grief and rage is movingly recalled. Courage and perseverance,
coupled with her engaging sense of humour, see her through; and her tale will be
an inspiration to anyone who has faced similar obstacles.
Jessica Kingsley Publishers
Paperback 1-84310-065-7, 2002, 224 pages, £13.95 $19.95
Special Offer for Encephalitis Society members.
£1 discount and free postage.
Quote The Encephalitis Society Special Offer when you order through the website,
phone, post or fax.
In the Shadow of Memory
by Floyd Skloot
Reviewed by Ava Easton
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 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.
Buy via our Amazon link
I'll carry the Fork! recovering a life after brain injury
by Kara L Swanson
Reviewed by Ava Easton
Kara is involved in a car accident and goes on to suffer from a subsequent brain
injury. She describes learning a harsh lesson very quickly, ‘…..sometimes
when your life ends, you don’t actually die’.
The book is humorous and factual with input from a variety of professionals. It
is an inspiration and a practical help to anyone dealing with the aftermath of brain
injury.
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.’
Buy via our Amazon link
Living
With Brain Injury
By Philip L Fairclough
Reviewed by Ava Easton
Philip sustained his acquired brain injury following an occupational accident in
Devon. As he struggled to understand what had happened, how best to deal with his
difficulties, and what the future may hold, he found a dearth of information on
brain injury. Therefore he decided to recount his experiences in the hopes they
may help those that follow him on the road back from brain injury.
The book describes a potted history of Philip’s journey, and mainly focuses
on the practical aspects of brain injury, rehabilitation, returning home and to
work. If you have little or no knowledge of brain injury then this book is a good
starting point, both for the brain injured person or their family/friends.
Buy via our Amazon link
Where is The Mango Princess?
– A Journey back from Brain Injury
by Cathy Crimmins
Reviewed by Ava Easton, Adult Support Coordinator, Encephalitis Society.
I had to get my local bookstore to get this over from America for me and I can tell
you it was worth the wait!
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.
Buy via our Amazon link
Over My Head
by Claudia L Osborn
A Doctor's Own Story of Head Injury from the Inside Looking Out
ISBN 0 7407 0598 9 Andrews McMeel Publishing
'This is an exceptionally well-written and engaging account of one woman's experiences,
thoughts, feelings and relationships as she slowly navigates a terrible corner in
her life, and ultimately finds a new identity'
Publishers Weekly
Buy via our Amazon link
Time out of Mind
by Jane Lapotaire
ISBN 1 86049 977 5 Reviewed by Ava Easton, Encephalitis Society Support Services
Coordinator
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.
Buy via our Amazon link
Weathering the Storms
– living with Epilepsy
By Julie Dennison
Reviewed by Ava Easton
Weathering the Storms is Julie’s personal account of living with epilepsy.
Julie’s epilepsy has been largely uncontrolled throughout most of her life
and her seizures range from absences through to tonic-clonic. The number of uncontrolled
seizures that Julie experiences every day means that her life is a constant process
of risk assessment and risk management. Julie manages unbelievably well and there
is little that she has not managed to do with the loving help and support of her
family.
Julie’s account is an uplifting one for anybody struggling in coming to terms
with, or living with epilepsy. However her book is more than that; it is a veritable
‘mine’ of top tips and sources of information for people affected by
and living with the consequences of epilepsy.
A good read – recommended!
Buy via our Amazon link
Last modified: 16 September 2008