Identity Unknown: How acute brain disease can destroy knowledge of oneself and others

189 Pages·2014·2.24 MB·English

by  Barbara A. Wilson

Identity Unknown
Imagine being unable to recognise your spouse, your children, or even
yourself when you look in the mirror, despite having good eyesight and
being able to read well and name objects. This is a condition that, in rare
cases, some brain injury survivors experience every day.
Identity Unknown gives an exceptional, poignant and in-depth under-
standing 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 a more
general loss of semantic memory.
Part I describes our current knowledge of encephalitis, of perception
and memory, and the theoretical aspects of prosopagnosia, semantic
memory and sense of self and self-identity. Part II, 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 Oli-
ver Zangwill Centre, and her description of the long-term consequences
of encephalitis. Claire’s profound insights, clear writing style and pow-
erful portrayal of her feelings provide us with a moving insider’s view of
prosopagnosia. These chapters also contain additional commentary from
Barbara Wilson and Claire’s husband Ed, providing further detail about
the condition, treatment possibilities, potential outcomes and follow-up
options.
Identity Unknown provides a unique personal insight into a condition
that 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.
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 pub-
lished 21 books, 270 journal articles and chapters and 8 neuropsycho-
logical 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 Spe-
cial 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 difficul-
ties and the experience of life after brain injury.
Joe Mole is a psychology assistant at the Oliver Zangwill Centre for
Neuropsychological Rehabilitation in Ely, UK. He is currently involved
in research into the neuropsychology of face recognition, navigation and
time perception.
After Brain Injury: Survivor Stories
Series Editor: Barbara A. Wilson
This new series of books is aimed at those who have suffered a brain injury,
and their families and carers. Each book focuses on a different condition,
such as face blindness, amnesia and neglect, or diagnosis, such as encepha-
litis and locked-in syndrome, resulting from brain injury. Readers will learn
about life before the brain injury, the early days of diagnosis, the effects of
the brain injury, the process of rehabilitation, and life now. Alongside this
personal perspective, professional commentary is also provided by a spe-
cialist in neuropsychological rehabilitation, making the books relevant for
professionals working in rehabilitation, such as psychologists, speech and
language therapists, occupational therapists, social workers and rehabilita-
tion doctors. They will also appeal to clinical psychology trainees and under-
graduate and graduate students in neuropsychology, rehabilitation science
and related courses who value the case study approach.
With this series, we also hope to help expand awareness of brain injury
and its consequences. The World Health Organisation has recently acknowl-
edged the need to raise the profile of mental health issues (with the WHO
Mental Health Action Plan 2013–20) and we believe there needs to be a
similar focus on psychological, neurological and behavioural issues caused
by brain disorder, and a deeper understanding of the importance of rehabili-
tation support. Giving a voice to these survivors of brain injury is a step in
the right direction.
Published titles:
Life After Brain Injury
Survivors’ stories
By Barbara A. Wilson, Jill Winegardner, Fiona Ashworth
Identity Unknown
How acute brain disease can destroy knowledge of oneself and others
By Barbara A. Wilson, Claire Robertson, Joe Mole
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Identity Unknown
How acute brain disease
can destroy knowledge of
oneself and others
Barbara A. Wilson,
Claire Robertson
and Joe Mole
First published 2015
by Psychology Press
27 Church Road, Hove, East Sussex BN3 2FA
and by Psychology Press
711 Third Avenue, New York, NY 10017
Psychology Press is an imprint of the Taylor & Francis Group, an informa business
© 2015 Barbara A. Wilson, Claire Robertson and Joe Mole
The right of Barbara A. Wilson, Claire Robertson and Joe Mole
to be identified as the authors of this work has been asserted
by them in accordance with sections 77 and 78 of the
Copyright, Designs and Patents Act 1988.
All rights reserved. No part of this book may be reprinted or reproduced
or utilised in any form or by any electronic, mechanical, or other means,
now known or hereafter invented, including photocopying and recording,
or in any information storage or retrieval system, without permission in
writing from the publishers.
Trademark notice: Product or corporate names may be trademarks or
registered trademarks, and are used only for identification and
explanation without intent to infringe.
British Library Cataloguing in Publication Data
A catalogue record for this book is available from the British Library
Library of Congress Cataloging in Publication Data
Wilson, Barbara A., 1941-
Identity unknown : how acute brain disease can destroy knowledge of oneself
and others / Barbara A. Wilson, Claire Robertson, and Joe Mole.
pages cm. — (After brain injury)
Includes bibliographical references and index.
1. Robertson, Claire—Health. 2. Encephalitis—Patients—Biography.
3. Brain damage—Patients--Rehabilitation—Biography. 4. Brain
damage—Patients—Biography. I. Robertson, Claire, 1961- II.
Mole, Joe (Joseph Alexander), 1988- III. Title.
RC390.W55 2015
616.8’3200092—dc23
[B]
2014018507
ISBN: 978-1-84872-284-2 (hbk)
ISBN: 978-1-84872-285-9 (pbk)
ISBN: 978-1-315-76271-5 (ebk)
Typeset in Times New Roman
by Swales & Willis Ltd, Exeter, Devon, UK
Contents
List of illustrations ix
Series preface xi
Foreword by Dr Bonnie-Kate Dewar xiii
Preface xvi
Acknowledgements xix
PART I 1
1 Encephalitis 3
2 An introduction to visual perceptual disorders and to
the agnosias 11
3 Theoretical accounts of person recognition 26
4 The self and identity 40
PART II 51
5 Life before the illness: Claire’s account 53
6 Calling my husband Stephanie 61
7 Kissing a cauliflower 65
8 Together we can 72
9 The Red Group: learning to belong to my own life 82
10 A face is not a person 94
viii Contents
11 Strategies that have helped 101
12 Can you believe your eyes? Sight difficulties following
encephalitis 105
13 “Metallic not sour” and pieces of the jigsaw 109
14 Paddling through the river and stepping on stones:
an overall summary of my life since encephalitis 116
15 Final last thoughts 123
Appendix 1 A summary of Claire’s one-day
preliminary assessment at the Oliver Zangwill Centre 128
Appendix 2 A summary of Claire’s rehabilitation
programme 134
References 149
Index 162
Illustrations
Figures
2.1 Claire’s MRI scan, conducted two years post-illness 17
3.1 The Bruce and Young (1986) model 30
3.2 Key differences between the Bruce and Young (1986) model
and the Interactive Activation and Competition Model 33
3.3 World map, drawn by Claire in 2014 38
4.1 People’s self-representations after brain injury may differ 42
4.2 Douglas’s (2013) model of “Conceptualising self after
traumatic brain injury” 44
4.3 Cycle of appraisals, anxiety and avoidance, and the impact
on self-concept 44
4.4 Claire using SenseCam to film the OZC therapy dog 47
5.1 Claire in her nursing uniform 54
5.2 Claire with her husband, Ed 55
5.3 Claire, as caring as ever 56
12.1 One of Claire’s collages, which she made to keep her
treasured memories safe 107
12.2 Claire’s collage of a special trip to York 108
12.3 Claire, Nicky and Barbara taking part in Trek Transylvania
with the Encephalitis Society 111
12.4 Claire with her friend Nicky 113
14.1 Claire and her pet duck (Peking) 122
15.1 The jigsaw of my life before it fell apart 125
15.2 Following my wonderful rehabilitation our eldest son
said to me “We’ve found the four corners now haven’t
we? And half the fun, well the whole fun really, will be
throwing all the pieces back into the middle!” 126
A2.1 CBT formulation (with thanks to Fergus Gracey) 139