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Daughter of Family G

Daughter of Family G

A Memoir of Cancer Genes, Love and Fate
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Dance Me to the End

Dance Me to the End

Ten Months and Ten Days with ALS
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Shut Away

Shut Away

When Down Syndrome Was a Life Sentence
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The Ghost Garden

The Ghost Garden

Inside the lives of schizophrenia's feared and forgotten
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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.

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Sea Trial

Sea Trial

Sailing After My Father
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My father’s effects were like flotsam on a beach, each wave leaving something behind as he weakened and died, until the beach was littered with his life. 

And there were so many John Harveys. The prairie kid who was happiest snaring gophers with his friends and crawling underneath the boardwalk on Main Street, who left home at sixteen and never came back, not even for his father’s death. The disillusioned high school teacher who borrowed money, went back to school and became a doctor. The photographer who filled our house with the smell of developers and fixers, and our family albums with images that were much more than snapshots. And the trophy-winning violinist and peripatetic physician who kept searching for the place where medicine was practised the way he thought it should be.

Getting a handle on a life like this one seemed impossible; there was always going to be something you couldn’t quite grasp. After he died, I took a lot of that flotsam into my own home and went gamely through it, sometimes laughing, occasionally crying. I spent a month classifying, labeling, judging, before distributing and disposing. Worst of all were the drop-offs at the Sally Ann, roaring away from the beaten chair and the obsolete stereo abandoned on a wet sidewalk.

For sheer tonnage, the photographs dominated, and that seemed fitting. Photography and music had been the passions that never faded, and he had left many pounds of meticulously labelled negatives and prints. Among the best were the black and white portraits of his fellow physicians, hand-made sixteen-by-twenties he had shot in a hallway, or an operating room, or the smoke-laden Doctors’ Lounge. My favourite bore a caption that typified the mordant sense of humour that my father tried to suppress, but never really could: in this portrait, the doctor is grinning, a cigarette in one hand and the other hand aloft, the thumb and first finger measuring off an inch or so of air.

“Just a small one,” the caption reads. “I have to operate.”

He also left bits and pieces from most of our boats. I went through mountains of nautical detritus in the freezing-cold shed behind his house, high-stepping over rusting garden tools and reaching around scary bottles of thirty-year old pesticide to get at the treasures. Rotting cardboard boxes rained hundreds of dollars worth of bronze nuts and bolts on my shoes. I unearthed a priceless collection of teak scraps left over from the costly rebuilding of a doomed deck; cans of questionable kerosene and long-solidified spar varnish; the rope and wood boarding ladder he’d made during his fear-of-falling overboard phase (this coincided with his fear-of-head-injury phase, when he wore a red motorcycle helmet while driving his convertible). One boat in particular was responsible for much head-scratching and even the need for a German-English dictionary: from Stortebeker III I discovered old Admiralty charts of Raoul Island, where HMS Bounty’s Captain Bligh and his men first made land after being cast adrift by the doomed Fletcher Christian, ceramic jars with cork-lined lids marked “Kaffee” and “Kakao” and even, stuffed into a black plastic back that showered me with rat droppings when I tugged it out of a high-up cranny, a threadbare Nazi flag. Stortebeker III had been built in 1937, in Bremen; there was no lead in her keel.

But the boat stuff was not so difficult to deal with. A lot of it, like the screws and the teak, went directly into my own boat stores, with silent thanks that I would never have to buy it. The coffee and cocoa containers were washed out and refilled. The rest of the household goods found their way to new homes, or to family shelves where they could bide their time for as long as it took for their new owners to die. I donated the doctors’ portraits to the Victoria Medical Society.

That left the papers.

My father’s papers (and there were a lot of them) were sealed in already-labeled cardboard boxes. I left those for last, finally working through them with a growing sense of dread. Most of them were no problem: letters, newspaper clippings about his early triumphs as a violinist, pristine instruction manuals for his many cameras, his own short stories and essays and even a few tentative poems. But there was one box I didn’t want to find. For a while I even thought it might not be there at all, that he might, in the final months before he was exiled to the nursing home and lost control over his own possessions, have managed to get down on his knees and enter the vile crawlspace beneath the kitchen, where I knew it was stored. I imagined him navigating shakily past the trap with the liquefying rat and the jumble of mouldy boat cushions, making it finally to the leaning pile of cardboard boxes to delete the one I feared.

I found it, of course. He could never have disposed of it even if he’d wanted to: it was too heavy. I shoved the box to one side, ignoring it until that’s all there was on the workbench: labeled like all the rest (he was a labeler), but more carefully than the others, the single word LEGAL written on one of those white adhesive rectangles with a red border, then licked and smoothed hard onto the cardboard so there would be no mistake about what was inside. The pain its contents represented had been impossible to contain, but at least the evidence was secure. Until now.

The tape yielded after a short struggle, and took some of the cardboard with it; he had sealed the box well. Inside were files, packed tightly, a solid cube of paper. I pulled them out in slippery handfuls, stacked them on the workbench, stomped the torn cardboard box flat; it was as frail, it turned out, as he was at the end. Then I began to go through the piles.

Work quickly, I told myself; be ruthless. You owe it to him to see what’s in here, but you don’t have to read anything. If he would never explain it all to you before, why start now?

The papers smelled of mould and neglect and, because I knew something of their story, of defeat. I began to go through them, a quick scan and then into the recycling box. Files of patients long dead, each in its own named folder. Photocopies of scientific papers from medical journals, none of them more recent than the mid-1980s. Long and ominous-looking transcripts in vinyl three-ring binders warped with age, and a thick bundle of yellowed newspaper clippings that I tossed without even looking. Printouts of some kind of manuscript, the lettering faded, on side-punched computer paper. I glanced and tossed, as though washing my hands of a corpse. It looked like the whole story was here.

And then, after about twelve inches, I gave up and began to go in reverse. The discard pile got smaller again. I couldn’t recycle or even shred this stuff, it was too sensitive. There were names. It must have taken him years to compile this dossier, with trips to the medical library, the archives, the stationery store for the recipe cards where every reference was recorded on its own little rectangle. Hydrocephalus in Children. Complications of Ventriculo-Atrial Shunts. The Practice of Law and the Search for Truth. Most of the reprints were heavily annotated, in orange highlighter or in his own neat hand; some of them were askew on the page. I imagined him, an unwilling student in his late seventies, cramming a heavy textbook over the photocopy machine, leaning on the cover, turning the page and doing it all again. I couldn’t throw this stuff away.

Pretty soon it was all back together again, a toxic little archive reconstructed. I grabbed one of the brand new U-Haul boxes, erected it and shoe-horned the lot back in. Then some packing tape, rather a lot of it, because I never intended to open the box again, and all it lacked was an unambiguous name. I took a felt pen and wrote the one he had already chosen for his own manuscript, on the top and on each side for good measure, so there’d be no mistaking it: THE TRIAL. Then I pushed it out of sight.

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A Doctor's Quest

A Doctor's Quest

The Struggle for Mother-and-Child Health Around the Globe
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Beginnings: Haileybury, Ontario, Canada, 1987

In January 1987, the phone rang at four in the morning. I stumbled out of the bedroom to answer it, my heart beating rapidly. A crisp European voice asked, “Is Dr. Roedde there? The doctor who taught at the Liverpool School of Tropical Medicine in England last year? That’s how I got your name.”

The frantic pounding of my heart slowed. Thank God it wasn’t an emergency.

“I’m calling from Geneva. Rosemary McMahon at Liverpool thought you might be interested in this job in Uganda. Could you be ready to go in two weeks?”

I was still struggling to wake up. “Yes, this is Dr. Roedde,” I said sleepily. “Uganda?” I was dimly aware that in Uganda the civil war was just ending and the country was plagued by HIV/AIDS.

“It will be a tough assignment. I am Katja Janovsky. I’ve been working there for years with AMREF [African Medical Research Foundation] before coming to the World Health Organization [WHO]. Whole villages are dying of AIDS, thin, wasted people struggling to keep on living. But they’re luckier than those who have died in the wars. There are fields that are still full of bones where Idi Amin has thrown the bodies of his enemies. I want you to be prepared.”

I collected myself. I was awake now. Almost. With one hand on the phone, I stretched over to add grounds to the automatic coffee maker with the other and switched the pot on, trying to focus.

Katja explained. “I’m building a team for German Technical Assistance [GTZ, now GIZ]. We’re going to help plan a primary health-care project in two poor, remote districts — Kabarole and Bundibugyo in western Uganda.”

Even half asleep I knew that primary health care was the most basic level of health care and included immunization, mother-and-child health, nutrition, water and sanitation, and provision of essential drugs.

Katja continued. “GTZ wants to strengthen primary health care because it’s low cost and saves the most lives. There will be a little hospital strengthening just to back up the primary level, but the major focus is to be on the poor. Can you go twice?”

As the caffeine hit my system, I learned that Katja wanted me for two missions: first, for this German project that she would be coordinating, and then for an AMREF mission that I would conduct on my own.

Over our clear transatlantic line, Katja explained more about the assignments. “There will be a couple of months for you to go home between the two missions, each of which will be four weeks long. The AMREF job is to strengthen the training for several different cadres of primary health staff, work you’ve already been doing in Liverpool. I know you’ve worked in Canada’s own developing world training Indigenous health workers and have had students from Africa, Asia, and the South Pacific at Liverpool. But isn’t it time you take this opportunity to work in the same conditions as your Liverpool students?”

Eager, I answered, “Yes,” but I tried not to let my nervousness show in my voice. “Katja, these will be my first assignments in Africa.”

After I got off the phone and while my family continued to sleep, I wondered how I would actually undertake these challenging journeys and how I could juggle them with the responsibilities I had to my family and my northern Ontario patients where I served as a locum physician in the small towns of Haileybury, New Liskeard, Latchford, Cobalt, and Temagami. At the same time I tried to pull together the fragments I knew about Uganda, many learned from my father, a retired librarian who is currently an artist, or from my husband, Jim, a historian who could provide political commentary on probably every country in the world over his gourmet-cooked meals.

A week later, with a cursory knowledge of German and the aid of a dictionary, I picked my way through the German contract that had arrived by courier. It was a delicate and difficult task, but by then I was fully engaged and energized at the prospect of going to Africa, something I had long wanted to do. But my excitement didn’t dispel my anguish at leaving my family for so long. When my daughter, Anna, was nineteen months old, I had left her for three months to study in Liverpool. I cried every day and was devastated when I returned and discovered that she didn’t recognize me. Over the years, I knew my children, Anna and Alec, who were then respectively eight and five years old, had become used to parents with alternating travel schedules. After Alec was born, it was my turn to hold down the fort while Jim, who worked as an Indigenous land claims historian and travelled extensively to Indigenous communities throughout North America, moved to Toronto for several months for a Supreme Court land claim trial. And so, with Jim’s encouragement and reassurance that he could handle my absence by rearranging his schedule to work from home, and after a discussion with my children that Mum would be away for a little while, I knew I could go.

What I didn’t know was that answering Katja’s phone call that early morning would change the way I worked for the rest of my life.

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