The Thing Inside My head



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A Family’s Journey Through Mental Illness
By Lois Chaber

ISBN: 978-1-84747-4018
Published: 2008
Pages: 531
Key Themes: family struggle, mental health institutions, anorexia, depression, extreme obsessive-compulsive disorder, Child and development psychology, Family Psychology, Abnormal Psychology,Mental Health Services, Memoirs, Autobiography, Coping with Eating Disorders, Coping with Death & Bereavement

“Human life is suffering but Sybil Macindoe suffered more
than others with a severe and complex mental health
problem, known as Obsessive Compulsive Disorder (OCD)
and Anorexia Nervosa. It was an extremely distressing and
handicapping condition for both her and family that ultimately
led to her tragic death.
This book provides some insight into both the experience of
Sybil as well as that of her carers and professionals. We can
all learn from her narrative and from the different
perspectives of her family and carers. I felt moved by her
experience and was left wishing that she could have taken
advantage of the newer developments in treating OCD.
The impact of OCD on the family is often hidden. Her
family’s observations and narrative are extremely balanced
and provide a cautionary tale for sufferers, carers and
professionals alike. There is lots of information and self help
material about OCD but this book is a valuable addition to
our knowledge about OCD and Anorexia Nervosa and its
impact on others.”

David Veale, Consultant Psychiatrist in Cognitive Behaviour Therapy,
South London and Maudsley Trust and the Priory Hospital North London.


Tehran, spring 1978: Into the political maelstrom of Iranian revolutionary activity is born a severely premature baby, Sybil Macindoe. Where and why will this child’s life end tragically twenty years later? Sybil, crucially, is separated from her mother by the Iranian medics, and when she finally goes home, her isolated and inexperienced parents struggle to manage her care as events crescendo around them. Her mentally unwell mother, an American academic and feminist with a troubled background, cannot cope. The same toxic mixture of ingredients will threaten Sybil’s survival throughout her young life: bad genes, adverse environmental triggers, family dysfunction, and inadequate medical institutions. Her mother traces these interacting influences as Sybil grows up later in fundamentalist Qatar and then immigrates with her family to the UK, where a mixed array of mental health institutions deals unevenly with the ‘things in her head’—anorexia, depression, and an extreme version of obsessive-compulsive disorder that includes bizarre religious fixations. So that readers may draw their own conclusions, her mother’s confessional narrative is interwoven with other viewpoints—of carers and administrators, family members, friends and especially the raw diaries of Sybil herself, intelligent and bewildered, generous and paranoid. This memoir pays tribute to Sybil’s brave struggle, is instructive for anyone involved with the onset and treatment of mental illness, and also tells an eventful and moving family story.

About the Author

Born a New Yorker, Lois Chaber was absorbed in a conventional academic career as a scholar/teacher in Eighteenth-Century English Literature until she was lured away to the Middle East in the mid-1970s by her third husband, a dynamic New Zealander. There, they experienced first-hand the turbulent triumph of Islamic fundamentalism in this oil-rich region and eventually left with Sybil and her younger sister Molly for London, where Lois has taught for a decade in a small American university. Various family misfortunes reached their climax in 1999 with Sybil’s tragic suicide, which compelled Lois to begin her memoir. A life-long anxiety/depression sufferer, Lois presently benefits from her psychotropic medicine, Quaker meetings, good literature, purring cats, the Jane Fonda Workout, and many rewarding relationships. She is committed to supporting various mental health charities.

Book Extract



“When I first went to the Bethlem, Mrs. Wells, who I had been living with in foster care, drove my mum and I down to the Bethlem. I wasn’t eating; I had an ng [nasogastric] tube up my nose. I wasn’t talking. I had my head right back as if I was looking up at the ceiling and my eyes rolled right back. I kept my eyes and head like this all the time except for when lying down in bed. I didn’t communicate at all except for a sort of smile, which meant agreement or ‘yes’. On the second day there my key worker Jane was on shift. That was when I started communicating with ticks, crosses and question marks. Jane suggested it and the thing inside my head which I thought was God said I could do it.”
From Sybil’s Memoir of her two years at the Bethlem Royal Adolescent Unit (1993-94), written in 1997.

“[Sybil’s] Patient Profile:
Physical: Small, thin (said to be 36 kg.) girl obviously malnutritioned. Peripherally blue, postural oedema [swelling, inflammation], noisy breathing, standing with arms rigid and head extended backwards. No solids since 09/11/92. n/g [nasogastric] feed tube in situ, incontinent of urine. Immobile.
Emotional: Appeared sad, did cry when being told how we assumed she must be very sad.
Social: No social contact at all—isolates herself, total gaze avoidance.
Language: Mute since admission [to Hill End Unit; Nov. 1992].
Family: Mother has history of depression.
Summary: Sybil is a 14-year-old girl with an extremely disabling and risky mental health problem. She has withdrawn and regressed to a point where she now receives care appropriate for an infant. This it would appear protects Sybil from other psychic constructs and brings her parents together where otherwise the family would fragment.”
From Medical Assessment of Sybil for admission purposes, Bethlem Royal Adolescent Unit, December 27, 1992.

“There was some feeling before that there had been a major trauma, and this was the result of it. I suppose I just didn’t really believe that. I think it was a case of a combination of things that had happened. Sybil would often say quite shocking things, like, “Do you think my father sexually abused me?” And I’d say, “No, I think what has actually happened and why you find it so hard to talk about it, is that it all seems like nothing”. And one of the things was the family being in Qatar and unable to leave because Neil’s passport had been taken away… And it was by her bringing up things like that, that gradually she realised we weren’t expecting one big disclosure.”
From an interview with Sybil’s former Associate Nurse at the Bethlem Royal Adolescent Unit.

“Oh why did it go wrong? Why?
I must be strong.
Sometimes I want to write out my whole story,
But I don’t have the patience to achieve that glory.
Everything is like an instant in my mind,
An explosion where you can see everything, all my troubles
Going up in the air for one second
Then it falls and becomes muck and rubble.
I have so much I’m carrying inside me,
But I fumble in the dark
For the door to let it out.
I feel like turning all those pains,
Those memories into a single scream or shout.
Where will I go when I am finished writing?
I am living, putting on a show, for the rest of my life.”
Poem by Sybil, Nov. 21st , 1996.

* * *

My daughter Sybil suffered from obsessive-compulsive disorder, mutism, extreme anorexia, and severe depression in the course of her brief history. She died a suicide, in 1999, after many dark days of illness mingled with bright flashes of her engagement with life. Her poem above, discovered by us after her death, moved me to write this memoir, in which I attempt to answer her anguished question, “Why?”
The ‘answer’ is not simple:
Sybil’s “whole story” is intimately bound up with my own psychic struggle and with the trials of our family members, both individually and collectively, in five different countries. Articulating the connections between our family difficulties and Sybil’s illness helped us, in some measure, to come to terms with her tragedy. Our hope is that other families can resonate with the story of our decisions and indecisions and our quests for help.
As time went by, Sybil’s fate was also profoundly affected by the strengths and the shortcomings of the successive counsellors and institutions that tried to help her. In this respect, “her story”—accounts of her treatments that unfold throughout the latter two thirds of this book—may possibly help bring about changes in how mentally ill young persons like her are treated by the National Health Service and other relevant bodies.
My complicity in Sybil’s tragedy, however debatable its degree, has led me in writing this memoir to draw on the voices of other participants in Sybil’s life, with their complementary information and countervailing views, with the aim of composing a fairer “story”. Not the least of these voices is Sybil’s, taken from her many diaries and other writings. Her own views of events, sometimes confused, sometimes searingly insightful, always illuminate.
“The thing inside my head” still haunts those who loved Sybil best, and we are confident she would have wanted sufferers, families and carers, among many others, to learn and benefit from this cautionary tale. Sybil’s express desire in her poem “to achieve that glory” meant, I believe, that she wanted to touch people’s hearts not only with her sufferings but also with her brave struggles against them. We dearly hope this book goes some way towards her reaching that goal.

4 reviews for The Thing Inside My head

  1. D. Ellerton UK (verified owner)

    The Thing Inside My Head gives us a rare window into the thoughts of a sufferer of obsessive-compulsive disorder through her diaries – and scrawled notes – as her condition worsens. Via these and many carefully detailed observations, we are able to better understand the actual mindset and feelings of someone in the grip of severe OCD when she exhibits the behaviours we find so bizarre and incomprehensible as observers.

    The author records meticulously the experiences of herself and her family in dealing not only with her mentally ill daughter, but importantly, with the medical profession; the family’s problems in trying to cope with the confidentiality accorded a patient who is technically an adult, but is in fact far from being able to assume responsibility for decisions affecting her own treatment, resonate with those of us who have had similar experiences.

    The resultant lack of a cohesive therapy, together with being shunted from one hospital or facility to another, from one PCT to another, from one doctor and set of nurses to another, had disastrous consequences, culminating in the ultimate tragic suicide of the author’s daughter while in hospital.

    This book should be mandatory reading for anyone who has a friend or relative suffering from mental illness, particularly OCD – in this case complicated by depression and sporadic bouts of anorexia – and who also may wish to delve into the possible “nature vs nurture” elements of the antecedents of mental illness.

  2. Dolores Rosenblum “Licensed Clin Chicago, IL USA (verified owner)

    This harrowing account of a family’s struggle with a beloved child’s severe mental illness is indispensible for sufferers and professionals alike. Sybil McIndoe suffered from severe obsessive compulsive disorder, compounded by anorexia and depression from childhood until her death at 20, a suicide. Obsessive compulsive disorder is known to be an especially refractory mental disorder, for which there was little effective treatment at the time Sybil was growing up. It’s the story of a well-intentioned and devoted family’s failure to negotiate the mental health system, abroad and in England, successfully. The author, Sybil’s mother,is unsparing in her critique of her role–and the family’s–in the origins and progress of Sybil’s disease. The narrative’s strength lies in its multivocal nature: we hear Sybil’s own voice, as set down in diaries and other writings, the voices of mental health professionals in their case notes, the voices of friends and companions in their responses to the writer’s requests. Through it all, Sybil comes off as a gentle and caring person, despite her torments, and her family as increasingly baffled by the limitations and inconsistencies of the mental health system. Lois Chaber’s integration of detail and analysis is impressive. I recommend this book highly to professionals dealing with families, and families themselves.

    Dolores Rosenblum “Licensed Clinical Social Worker

  3. Elena Domaratskaya France (verified owner)

    ‘The Thing Inside My Head’ by Dr. Lois Chaber is a poignant account of her daughter’s short and tragic life darkened by obsessive-compulsive disorder, the life that ended in a suicide at a place where one would think their loved ones are best protected, i. e. an NHS hospital. An accomplished academic, Lois Chaber goes far beyond the standpoint of a grieving mother and produces a detailed and objective piece giving voice to all people and organizations involved.

    The most invaluable of those voices is, of course, that of her deceased daughter: the diaries of the sufferer herself give the reader a rare insight into the mind of a person affected by this particular mental illness. Reading them after you have already been acquainted with her bizarre behaviours through the eyes of her family and friends, as well as through official and personal accounts of staff attending to her, can turn everything you have been thinking of it upside down. Whether you have experience dealing with mentally ill people in your own life or not, it is extremely hard to comprehend what goes on in the mind of the person affected. Through its structure and particular combination of sources, this book comes very close to giving its readers an almost first-hand experience of the issue.

    At the same time, the author raises a number of issues related to the British medical system, such as the rule of confidentiality applied to adult patients. Although far from accusing the system or any particular individual, Lois Chaber questions through her daughter’s story whether mentally disturbed people can be held responsible for decisions that affect their own treatment, as well as whether British hospitals have adequate facilities and regulations to prevent their patients from suicides.

    Anyone taking interest in mental illness for whatever reason will find this beautifully written, whilst disturbing, book useful and informative.

  4. Megan Karnes OCD Action (verified owner)

    In coming to terms with the devastating effect of OCD, or any serious Mental
    Health disorder, it can seem simpler to create an ‘us and them’ situation,
    coolly distancing ourselves from the person and our own feelings in the
    interest of survival-both theirs and ours. Lois Chaber has written a
    heart-wrenching book that explores the impact of her daughter’s OCD from all

    ‘What went wrong?’ would be a standard place to begin. Ms Chaber then
    continues on to ask ‘How did I contribute to the problem?’ This is just one
    of the unique aspects of this book. How many of us do feel responsible for
    ‘the others’ Mental Health? How many of us have the courage to really look
    at how we may actually, in spite of our best intentions, make things worse?
    Struggling to get help within a system, which at the time was significantly
    less aware about appropriate treatment, is a mother battling her own
    depression and lack of knowledge about what she needs to do.

    The book is written in three parts. The first details the interesting
    family story of the English family living in the Middle East. The second
    weaves Sybil’s personal diaries into an often desperate narrative from the
    mother trying to save her daughter and seemingly succeeding. The third
    follows the surprising and tragic downturn that Sybil, and the family,

    I would highly recommend this book for carers, families and friends. Lois’
    personal journey, Sybil’s poignant and honest diary and the harrowing
    journey the family takes through treatment provide valuable insight. While
    Sybil’s innocent honesty can potentially help families to understand suicide
    ideation and other areas within OCD, it may not be beneficial for those
    personally struggling with this dynamic. Sybil, for a myriad of reasons,
    rarely was able to differentiate between OCD and her own experience. For
    anyone else I would consider this a ‘must read’.

    Megan Karnes, OCD Action

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