Mental Health

INTRODUCTION

An Invitation tothe 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.