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Psychology Schizophrenia

The Ghost Garden

Inside the lives of schizophrenia's feared and forgotten

by (author) Susan Doherty

Publisher
Random House of Canada
Initial publish date
Sep 2020
Category
Schizophrenia, Mental Health, Medical
  • Hardback

    ISBN
    9780735276505
    Publish Date
    May 2019
    List Price
    $32.95
  • Paperback / softback

    ISBN
    9780735276529
    Publish Date
    Sep 2020
    List Price
    $22.00

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Description

"A compelling act of connection, leavened with humour, clear-eyed yet packed with hope." --Ann-Marie MacDonald
A rare work of narrative non-fiction that illuminates a world most of us try not to see: the daily lives of the severely mentally ill, who are medicated, marginalized, locked away and shunned.

Susan Doherty's groundbreaking book brings us a population of lost souls, ill-served by society, feared, shunted from locked wards to rooming houses to the streets to jail and back again. For the past 10 years, many who have cycled in and out of the locked wards of the Douglas Institute in Montreal found a friend in Susan, who volunteers on the wards and then accompanies her friends out into the world.

With their full cooperation, she brings us intimate stories that challenge our views of people with mental illness. Through "Caroline Evans," a woman in her early sixties whom Susan has known since she was a bright, sunny school girl, we experience living with schizophrenia, such as when Caroline was convinced she could save her roommate from the devil by pouring boiling water into her ear... She has been through it all, including having to navigate an indifferent justice system that is incapable of serving the severely ill.

Susan interleaves Caroline's story with vignettes about her other friends--stories that reveal their hopes, circumstances, personalities, humanity. Susan found that if she can hang in through the first 10-15 minutes of every coffee date with someone in the grip of psychosis, true communication results. Their "madness" is not otherworldly: instead it tells us something about how they're surviving their lives and what they've been through. The Ghost Garden carries a cargo of compassion and empathy that motivates us to re-examine our understanding of justice, society and humanity.

About the author

Awards

  • Winner, The Quebec Writers' Federation Literary Award - Mavis Gallant Prize for Non-Fiction

Contributor Notes

SUSAN DOHERTY is a Montreal writer whose award-winning debut novel, A Secret Music, was published in 2015. She worked on staff for Maclean's, and freelanced for The International Herald Tribune, La Tribune de Genève, and The Independent in London, and for eighteen years ran her own advertising production company. She has served on the boards of the Royal Conservatory of Music, the Quebec Writers' Federation and Nazareth House, a home for those afflicted by addiction and homelessness. Since 2009, she has volunteered at the Douglas Institute, a psychiatric hospital, working with people living with severe mental illness. She is married to the educator Hal Hannaford, and has two children.

Excerpt: The Ghost Garden: Inside the lives of schizophrenia's feared and forgotten (by (author) Susan Doherty)

INTRODUCTION

An Invitation to the Ghost Garden

I did not intend to write a book about people who live with schizophrenia. But in October 2009, a door opened in front of me and I unexpectedly found myself face to face with a group of highly misunderstood souls. The door was to an elevator that required a special key to gain access. It carried me up to a locked ward. I’d never gone anywhere in the hospital where the doors shut tight behind me. My legs were a little shaky and my heart was thumping as I stepped off the elevator into a hallway where listless men and women in various states of undress regarded me with suspicious eyes. Grooming was non-existent. Their slippers whispered to the linoleum as they shuffled along, many in flapping hospital gowns, murmuring to themselves.

I was there as a new volunteer to meet a woman I’ll call Camilla. Her doctor had described her background to me only as “troubled.” I wore a zebra-print cotton dress, and as it turned out, on that day Camilla was wearing a zebra-print cotton top. She gave me the once-over as she came towards me, a penetrating gaze that seemed to burn a hole right through to my core. But we became friends that afternoon and we remained friends until the hour of her death—a relationshipthat altered us both.

Months before that first trip to a locked ward for the extremelymentally ill, I had come to this hospital—the Douglas Institute—todo research for a novel set in 1930s Montreal that touched on the era’sheartbreaking psychiatric practices. I spent many hours in the libraryand archive department, where I watched a vintage black-and-whitemovie of a patient undergoing shock therapy. I saw photos of a terrifiedwoman with strips of cloth jammed into her ears to block unwantedvoices. I read the case histories of people who’d been dropped off at thehospital by their families and never reclaimed. The hospital was socandid and transparent about historical treatment options that after Iwas done with my research I wanted to reciprocate their generosity insome way. So I offered my time as a volunteer. If I’m honest, what I’dseen in the archive and on the hospital grounds also weighed on myconscience. It was clear that people were still being cast off, shuntedaside, even shunned, and I wanted to help.

John Matheson, a priest who headed the volunteer department,interviewed me for more than three hours. He asked me a hundredquestions, none of which seemed to have any relevance to mental illness.We talked about whales, of all things. Then I had to pass a policecheck. After all that, I assumed I would be tasked with filing documentsor some such clerical chore, maybe working at the foundationor a reception desk. Instead, Matheson asked me to befriend Camilla.I said okay, though I admit I was not only frightened but also unsurewhether I was up to the job. She lived on a ward for the chronicallymentally ill.

But, somehow, Camilla and I came together as two people. Shetaught me that having even a single friend is not a given when yourmind has been claimed by a psychotic disorder. She taught me about shame, addiction, sexual abuse, homelessness, and the true meaning of condescension. She didn’t use words to articulate those themes; rather, I saw her plight with my own eyes. People with schizophrenia often live far outside the boundary of acceptance.

I was not given a laundry list of what was wrong with Camilla, nor a description of a past that would define her today or limit her tomorrows. The days and weeks and years after I met her honed my understanding of schizophrenia, and led me to advocate on behalf of those who were unable to do so for themselves. That first friendship led to another and another, and soon I was transfixed by the lives of the marginalized and forsaken. My ability—if you can call it that—to connect with people who have been pushed to society’s margins made me long to gather and communicate their stories.

And then, in the middle of all these extraordinary encounters, a dear friend from elementary school asked me if I would write the life story of her sister, a woman who has struggled with severe mental illness for decades. Caroline Evans (not her real name) is now in her sixties, and has cycled in and out of hospitals and group homes looking to be cured for thirty years. She has never been able to elude schizophrenia. It’s an edgeless, unknowable, looping odyssey, which no one drug or treatment regimen will fix. To the burden of the person already suffering from voices in their head and other horrors, add stigma, isolation, and marginalization. The easy path was to view Caroline as an incurable, obese, crazy lady, but I couldn’t stop thinking that at one time she had been just like me. In all the most important ways, she still is. Her experiences have become the spine of this book.

I first met Caroline in 1967 when she was in grade four, over fifty years ago. She was a bubbly, white-blond nine-year-old with an infectious laugh, who showed no hint of what was in store. At the age of twenty-one, something changed within her brain and she began to experience violent sexual hallucinations, delusions, and paranoia. Caroline herselfalso wanted me to tell her story in order to tease out, if I could, thereasons why she has had grave difficulty maintaining recovery and topresent a set of circumstances that might be familiar to and havemeaning for others. The mistakes that were made in Caroline’s life andtreatment are lessons for family members who find themselves drawn,unwitting and unwilling, into the chaos of mental illness. 

Since 2011, I have had hundreds of phone conversations with Caroline as she has crawled back into the darkest corners of her memory,places she thought were either inaccessible or best left undisturbed.I probed. She answered. We have laughed and we have cried over thetelling of her life, but it’s her honesty that has driven the writing. Andthe text, as a result, is scattered with her thoughts: frank reflections ona tattered life and the hard lessons she has learned.

Intermingled with Caroline’s story are eighteen vignettes of the menand women who have also spoken to me of their deepest desires, unmetlongings, and unimaginable hurts. For some, I am their only friend.The loneliness I have witnessed is beyond the beyond. What began forme as a weekly volunteer commitment has transformed into a need toshed light on the truth of debilitating mental illness. To prove thathope exists. Without this first-hand experience, I would not have beenable to understand the hurdles of a misunderstood condition that stilldeeply frightens us as a society, even as we seem to grow more comfortabletalking about depression and anxiety. Without my friendships, I would not have been able to do justice to Caroline’s story or articulatethe tangled nuances of psychosis that plague the people I write about.

I’ve changed all the names and some identifying details, but the storiesin this book have been sanctioned by those who have suffered, be itpatient or family member. (I have not changed the names of the doctorsand health professionals I quote for their insights into both Caroline’s long history, and the treatment of schizophrenia in general.) I didn’t set out to do this, but I have inadvertently created a forum that allowed the psychologically afflicted, medicated or self-medicated, the walking wounded, to voice their truths. Those who are ignored and stepped around on the streets, the homeless who cycle in and out of wards and through rooming houses, are hardly seen as human, and are left to wander in a ghost garden—an interior haven where emotional pain can be suppressed.

Along with Caroline and my other friends, the heroes of this book are Caroline’s sisters, who shared details that were shameful and painful, always with an eye for who would benefit from the reading. It has taken years to piece the story together, since everyone involved remembers each traumatic situation through his or her own lens, though each has suffered the emotional toll. Schizophrenia is a devastating disease. It’s chronic, frightening, and isolating.

My hope is that this book will help family members and others pinpoint warning signs and thereby, perhaps, be in a position to identify incipient mental illness—thus preventing the harrowing lives experienced by the people I have written about. The thread of Caroline’s story, and the dozen-and-a-half other snapshots, show how the condition, if left untreated, can play havoc with all that represents a life well lived. I believe it doesn’t have to. It mustn’t.

And if that lofty goal proves hard to reach, at least I can tear down some of the fences that prevent us from seeing those with schizophrenia as intelligent, productive, engaged, hilarious, beautiful, poetic, insightful, maternal, responsible human beings—and, above all, worthy of love.

1

Kill the Devil

Caroline Evans left her apartment on McCarthy Avenue with a one-way bus ticket shoved into the pocket of pink drawstring pyjamas that doubled as pants. It was the morning of Friday, July 31, 2002, the beginning of a sweltering long weekend in Ontario. She boarded the number 106 bus bound for the Ottawa General Hospital, and something about her startled eyes guaranteed the seat beside her stayed empty, despite the early morning rush. At the check-in window of the emergency department, she asked, perhaps too politely, to be admitted. Caroline’s hair was a nest of knots, her blouse a crust of tomato soup stains, but the distracted nurse turned her away, missing vital signs of an unwashed woman distracted by a hailstorm of voices in her head.

Instead of taking the bus back to her three-bedroom townhouse, Caroline trudged home on foot. It took over ninety minutes in steamy thirty-degree weather. Hilary and Simon, Caroline’s roommates, were not home. All three of them had messy histories of mental illness and they had come together because they couldn’t afford to live alone. At the front door, Caroline took a deep breath to try to calm the tidal wave of messages now sounding in her head.

She walked up the steps to her bedroom, which smelled of sweat, cigarettes, and used Kotex pads, and peeled off filthy white socks that hadn’t been washed in weeks. She lit a cigarette, drawing hard, ran her hand through her stiff hair, then sat down in her usual chair and closed her eyes.

On the table, next to her overflowing ashtray, was a pile of birthday cards, Hallmark messages of love and support from her siblings, and an unwashed plate where dry cake crumbs mingled with more cigarette butts. Her birthday in mid-July had been the single best day of her summer, especially when the phone rang and she could talk to her sisters and brothers. Her youngest sister, Peggy, had dropped off a chocolate cake. Hilary and Simon had laughed when Caroline needed help blowing out the candles, blaming her lack of wind on her smoking and the fact that she was getting up there in age. What was left of Peggy’s cake was still on the kitchen counter, attracting ants.

What happened between that Friday and Sunday morning is lost to the voices in Caroline’s head. What she does know is that near noon on Sunday, she filled a large kettle with water and placed it on the stove to boil. The instructions from the gang of voices were clear and specific: Kill the devil. As the kettle hissed like a tomcat, she knew what had to be done.

Caroline carried the kettle from the kitchen to the blue velour living room couch where Hilary lay asleep. She leaned down and poured boiling water into Hilary’s ear, where the voices said the devil was breathing.Hilary’s screams filled Caroline with horror. Something had gone terribly wrong. Not only was the devil not dead, her friend was hurt, her skin bubbled and blistered. Covering her ears to block out Hilary’s shrieks, Caroline watched her friend stagger across the room in a screaming panic to call 911. Caroline, though she had lived agonies herself, had never witnessed such pain in another person.

When Simon saw what had happened, he fled the townhouse, leavingthe front door wide open. He roamed the nearby streets, knowinghe should call someone but uncertain as to whether he should tellCaroline’s family. How could he snitch when Caroline had helped himtime and again when he was down and out? No one had been hisfriend like she had; she had taken him in when he couldn’t find a roominghouse, let alone buy a Pepsi or a pack of cigarettes. At a nearbyphone booth, he sank to the ground and rocked from side to side, hisarms cradling his knees. Should he tell one of her sisters what Carolinehad done, or shouldn’t he?

Back at the townhouse, six police officers and an ambulance arrivedat the scene. Hilary had such severe burns on her ear, face, arm, back and chest that she had difficulty moving anything but her lips, whichquivered with the mournful sound of her crying. The emergency teamgently placed her on a stretcher then carried her out to the flashingambulance. Hilary had stopped crying, and the ensuing silence was eerie—only broken when the siren was turned on as the ambulancepeeled away.

Caroline was huddled near the window, still holding the kettle, astwo of the constables took a careful look at the room—inexpensive,lumpy furniture, mismatched lamps, a scratched coffee table, but nosigns of a skirmish. In the kitchen, there was bread on the counter, milkin the fridge that wasn’t past due, blackish bananas in a fruit bowl. Thecrusty, tired birthday cake. They turned back to the woman with thekettle—the obvious culprit—and soon Caroline was handcuffed andbeing led outside, where a few neighbours stood watching in groups oftwo and three. The officers pushed Caroline into the back seat of apolice vehicle and drove her to the Elgin Street police headquarters, where she was charged with assault with a weapon. White-faced andobedient, Caroline had not said a word.

Editorial Reviews

Winner of the 2019 Quebec Writers' Federation Literary Awards Mavis Gallant Prize for Non-Fiction

“This is a book I wish I could have written. Susan Doherty’s eyes, ears and heart show us professionals who our patients really are and what their lives are really like. We should all see the person before the diagnosis.” —Dr. David Bloom, medical chief, Psychiatric Disorders Programme, Douglas Institute
 
“As a neuroscientist who understands the brain and its disorders, I know I still share the unconscious negative bias towards patients with schizophrenia. Yet in the startling detail of these stories about lives lost, Susan Doherty reveals the enduring humanity that resides within the souls of all persons suffering from this dreadful disease. She has given a voice to those unfortunate human beings who have long been unheard.” —Dr. G. Rees Cosgrove, neurosurgeon, Harvard Medical School
 
“I’m thirty years old and have been in and out of the system for twelve years. It’s about time a book came out that showed the mentally ill the way we actually are—as sentient and as competent as everyone else, though we might appear to be different. I loved reading these stories of unfairly marginalized people, some of whom I know personally. This book is the start of greater acceptance.” —Katharine Cunningham, a resident of Nazareth Community
 
“Being able to reach out to people with a severe mental disorder without the self-protective measures that come with being a mental health ‘professional’ is an uncommon gift. Susan Doherty has it, obviously. Her account of her relationships with people with severe mental illness will bring you very close to them, and safely so. Reading her book might even make you a better person.” —Dr. Pierre Etienne, associate professor of clinical psychiatry, McGill University
 
“This compassionate, perceptive and absorbing book chronicles the lives of people who have not let themselves be entirely crushed by the random cruelty of what used to be called insanity. Since more than one in four people is touched by mental illness personally or in their families, I recommend this readable, valuable book to everyone.” —Dr. James Farquhar, psychiatrist, Douglas Institute
 
“With her brave and generous reporting from the front lines of intense human suffering, Susan Doherty delivers a fundamental challenge to everyone inside and outside the mental health system: what do we owe people who have lost their minds? Her poignant and harrowing profiles of men and women diagnosed with schizophrenia make a compelling case for the transformative power of personal compassion and tenacity.” —James FitzGerald, author of What Disturbs OurBlood: A Son’s Quest to Redeem the Past
 
“A luminous, fierce and loving portrait of our brothers and sisters who suffer in ways that can appear bewildering and frightening; that can deplete the compassion even of those who love them most—ways in which the abiding human need for connection is obscured by personal chaos. The Ghost Garden in itself is a signal and compelling act of connection, leavened with humour, clear-eyed yet packed with hope.” —Ann-Marie MacDonald, novelist and playwright