PART ONE 1. Encephalitis 2. An introduction to visual perceptual disorders and to the agnosias 3. Theoretical Accounts of Prosopagnosia 4. The Self and Identity PART TWO 5. Life before the illness: Claire’s account 6. Calling my husband Stephanie 7. Kissing a cauliflower 8. Together we can 9. The red group - ‘learning to belong to my own life’ 10. A face is not a person 11. Strategies that have helped 12. Can you believe your eyes? Sight difficulties following encephalitis 13. ‘Metallic not sour’ and pieces of the jigsaw 14. Paddling through the river and stepping on stones: An Overall Summary of my Life Since Encephalitis 15. Final last thoughts
Barbara A. Wilson is a neuropsychologist and founder of the Oliver
Zangwill Centre for Neuropsychological Rehabilitation in Ely, UK.
She has worked in brain injury rehabilitation for over 35 years and
has published 21 books, 270 journal articles and chapters and 8
neuropsychological tests. Among her many awards she has an OBE and
two lifetime achievement awards. She is the editor of the journal
Neuropsychological Rehabilitation, which she founded in 1991.
Claire Robertson is a nurse, mother, wife and friend. She qualified
as a State Registered Nurse, a Sick Children’s nurse and a nurse
for Special and Intensive Care of the Newborn. She survived Herpes
simplex encephalitis in 2004, which left her with a very severe
loss of knowledge of people and their identity. She regularly gives
talks about her difficulties and the experience of life after brain
injury.
Joe Mole is a psychology assistant at the Oliver Zangwill Centre
for Neuropsychological Rehabiliation in Ely, UK. He is
currently involved in research into the neuropsychology of face
recognition, navigation and time perception.
‘While this book provides a theoretical account of Encephalitis and
subsequent disorders of visual perception and agnosias, which will
be useful to students, clinicians, people affected, and their
families, it really comes into its own by including an
extraordinarily in-depth case study by Claire, a survivor of herpes
simplex encephalitis. In a break away from many traditional texts,
containing only medical and academic observations and analyses,
Claire’s own narrative, along with that of her husband Ed and
therapists involved in her treatment, are interwoven into the text.
This provides great insight and is at times both uplifting and
harrowing. These narratives demonstrate how very complex the brain
is and how our desire to compartmentalise it and the effects it has
upon people, once damaged, is quite simply not possible. We see
from this detailed story how encephalitis strikes at the very core
of a person’s identity, throwing into flux not only their own life
but that of those around them – traditional family dynamics and
love are tested in ways we can only hope we never experience
ourselves.’ - Ava Easton, Chief Executive, The Encephalitis
Society‘This book will be of interest to clinicians, people who
have experience with encephalitis, and anyone who might wish to
learn more about some of the intricate ways in which our brains
help us makes sense of the world. It is an extremely readable
account of the nature of encephalitis and the kinds of perceptual
and cognitive impairments that people who suffer encephalitis can
experience. Most importantly, this book provides a vivid,
courageous and moving account of the impact of encephalitis from
the perspective of Claire, an articulate woman who has learned to
live with the condition. Claire’s description of her journey
through illness and recovery provides insights into what the world
is like when suddenly all that was familiar is unfamiliar. The book
includes authoritative overviews of the medical and
neuropsychological effects of encephalitis as well as Claire’s
narrative along with asides from her husband and therapists and
notes of clarification and expansion from Barbara Wilson. Combined,
it provides a comprehensive, knowledgeable and uplifting account of
living with the effects of encephalitis.’ - Skye McDonald, School
of Psychology, UNSW Sydney, Australia‘In this book Wilson,
Robertson, and Mole provide the reader with a comprehensive review
of the neurobehavioral and psychosocial ramifications of
prosopagnosia. The cognitive and neural substrates of prosopagnosia
are presented in a manner that is accessible to readers so that
they come away with a clear understanding as to how the condition
emerges and how it is conceptualized by neuroscientists. Even more
compelling is Claire's first-hand account of alterations in her
personal memories, sense of self, and her capacity to feel whole.
The dialogue between Claire and her therapeutic team sets the stage
for well-articulated therapeutic goals suited to her lifestyle as
well as her cognitive, perceptual, and emotional needs. The bar is
set high and the mantra, established early in her program, is
"together we can." This book is a wonderful guide for the patients,
caregivers and clinicians who seek education and guidance regarding
optimal adaptation to brain damage’. – Margaret O'Connor, Harvard
Medical School, USAThis is a unique book about, and by, a
remarkable person called Claire. At age 43, having previously been
completely well and living an active and successful professional
and family life, Claire was afflicted by a rare and severe brain
disease, Herpes Simplex Virus Encephalitis, or HSVE for short. The
book warrants the label ‘unique’ because of the variety of
perspectives that it offers on Claire’s illness. These different
perspectives are provided (a) by the clinicians who designed,
implemented and monitored Claire’s post-disease rehabilitation; (b)
by the researchers who were already knowledgeable about the types
of deficit that can result from HSVE, and who performed many
assessments and investigations with Claire to increase this
knowledge for themselves and for the entire field of
neuropsychology; and (c) by Claire herself. Claire warrants the
label "remarkable" because of her experiences of this devastating
illness, and even more so because of her ability and willingness to
write about those experiences. Even the most expert and insightful
neurologists and neuropsychologists, with substantial knowledge
about the deficits associated with a brain disease like HSVE, can
only know the consequences from the outside looking in. They, and
we, rarely have the opportunity to hear an extensive account of
those experiences from the perspective of a true ‘insider’ like
unlucky but valiant Claire. I strongly recommend this book. -
Karalyn Patterson, Department of Clinical Neurosciences, University
of Cambridge, UKThis book takes a unique approach by merging our
scientific understanding of prosopagnosia (face blindness) and
identity loss with a first-hand account of everyday life with the
condition. While Barbara Wilson and Joe Mole present a
comprehensive yet accessible account of the cognitive and neural
underpinnings of prosopagnosia and identity loss, Claire Robertson
offers an insightful and often emotional reflection on life without
person recognition skills. This book is a must-read for those with
a professional or general interest in neurorehabilitation, and
presents a poignant reminder of the need to raise awareness of this
relatively unknown condition. - Sarah Bate, Department of
Psychology, Bournemouth University, UK
‘While this book provides a theoretical account of Encephalitis and
subsequent disorders of visual perception and agnosias, which will
be useful to students, clinicians, people affected, and their
families, it really comes into its own by including an
extraordinarily in-depth case study by Claire, a survivor of herpes
simplex encephalitis. In a break away from many traditional texts,
containing only medical and academic observations and analyses,
Claire’s own narrative, along with that of her husband Ed and
therapists involved in her treatment, are interwoven into the text.
This provides great insight and is at times both uplifting and
harrowing. These narratives demonstrate how very complex the brain
is and how our desire to compartmentalise it and the effects it has
upon people, once damaged, is quite simply not possible. We see
from this detailed story how encephalitis strikes at the very core
of a person’s identity, throwing into flux not only their own life
but that of those around them – traditional family dynamics and
love are tested in ways we can only hope we never experience
ourselves.’ - Ava Easton, Chief Executive, The Encephalitis
Society‘This book will be of interest to clinicians, people who
have experience with encephalitis, and anyone who might wish to
learn more about some of the intricate ways in which our brains
help us makes sense of the world. It is an extremely readable
account of the nature of encephalitis and the kinds of perceptual
and cognitive impairments that people who suffer encephalitis can
experience. Most importantly, this book provides a vivid,
courageous and moving account of the impact of encephalitis from
the perspective of Claire, an articulate woman who has learned to
live with the condition. Claire’s description of her journey
through illness and recovery provides insights into what the world
is like when suddenly all that was familiar is unfamiliar. The book
includes authoritative overviews of the medical and
neuropsychological effects of encephalitis as well as Claire’s
narrative along with asides from her husband and therapists and
notes of clarification and expansion from Barbara Wilson. Combined,
it provides a comprehensive, knowledgeable and uplifting account of
living with the effects of encephalitis.’ - Skye McDonald, School
of Psychology, UNSW Sydney, Australia‘In this book Wilson,
Robertson, and Mole provide the reader with a comprehensive review
of the neurobehavioral and psychosocial ramifications of
prosopagnosia. The cognitive and neural substrates of prosopagnosia
are presented in a manner that is accessible to readers so that
they come away with a clear understanding as to how the condition
emerges and how it is conceptualized by neuroscientists. Even more
compelling is Claire's first-hand account of alterations in her
personal memories, sense of self, and her capacity to feel whole.
The dialogue between Claire and her therapeutic team sets the stage
for well-articulated therapeutic goals suited to her lifestyle as
well as her cognitive, perceptual, and emotional needs. The bar is
set high and the mantra, established early in her program, is
"together we can." This book is a wonderful guide for the patients,
caregivers and clinicians who seek education and guidance regarding
optimal adaptation to brain damage’. – Margaret O'Connor, Harvard
Medical School, USA'This is a unique book about, and by, a
remarkable person called Claire. At age 43, having previously been
completely well and living an active and successful professional
and family life, Claire was afflicted by a rare and severe brain
disease, Herpes Simplex Virus Encephalitis, or HSVE for short. The
book warrants the label ‘unique’ because of the variety of
perspectives that it offers on Claire’s illness. These different
perspectives are provided (a) by the clinicians who designed,
implemented and monitored Claire’s post-disease rehabilitation; (b)
by the researchers who were already knowledgeable about the types
of deficit that can result from HSVE, and who performed many
assessments and investigations with Claire to increase this
knowledge for themselves and for the entire field of
neuropsychology; and (c) by Claire herself. Claire warrants the
label "remarkable" because of her experiences of this devastating
illness, and even more so because of her ability and willingness to
write about those experiences. Even the most expert and insightful
neurologists and neuropsychologists, with substantial knowledge
about the deficits associated with a brain disease like HSVE, can
only know the consequences from the outside looking in. They, and
we, rarely have the opportunity to hear an extensive account of
those experiences from the perspective of a true ‘insider’ like
unlucky but valiant Claire. I strongly recommend this book'. -
Karalyn Patterson, Department of Clinical Neurosciences, University
of Cambridge, UK'This book takes a unique approach by merging our
scientific understanding of prosopagnosia (face blindness) and
identity loss with a first-hand account of everyday life with the
condition. While Barbara Wilson and Joe Mole present a
comprehensive yet accessible account of the cognitive and neural
underpinnings of prosopagnosia and identity loss, Claire Robertson
offers an insightful and often emotional reflection on life without
person recognition skills. This book is a must-read for those with
a professional or general interest in neurorehabilitation, and
presents a poignant reminder of the need to raise awareness of this
relatively unknown condition'. - Sarah Bate, Department of
Psychology, Bournemouth University, UK
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