A Family’s Journey Through Mental Illness
By Lois Chaber
Key Themes: family struggle, mental health institutions, anorexia, depression, extreme obsessive-compulsive disorder
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.
“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.