I TOLD MY EIGHTEEN-YEAR-OLD DAUGHTER THAT I was sure they were going to kill me. She insisted that I call her hourly that night from the psych ward, to reassure her that I was all right. It was December 2008, and she was away at her first year of university. She cajoled me through my fears and supported me with her love. Only that was supposed to be my job. How did the tables get turned like this?
They’re pretending to be busy but they’re watching me. I know that they even have cameras in the washrooms and the showers out on the floor, perverts!! Uh-huh! Today they’re all wearing colours for the different guys I’m enamoured with, to show their support for one or the other. Purple, red, black, white. The guys, they’re always yacking at me and arguing but I can barely hear them. What do they expect; they’re all talking at once. Then they get mad ’cause I can’t seem to respond to each one individually. I want us all to live together under one roof. Crazy me. The head doctors are constantly trying to hypnotize me with their eyes again. Drain the information out of me. Can’t fight against it; they always win.
In my family, the incidence of mental health problems runs high. My mother and her twin sister are both bipolar. On my father’s side, one of my aunts was bipolar and two of my cousins are schizophrenic. While some people dispute the idea that mental illness can be hereditary—and I, too, believe in the importance of social and environmental causes—you can nonetheless see that the odds were pretty high that someone else in my immediate family might get hit over the head with it, too. The only mitigating factor was that, having witnessed my mom in periods of illness, we already knew something about it and were well aware of the signs.
In 1979 I graduated from university and took off to Europe. Six months later I was twenty-one and living in Berlin. I was too busy living my adventure to worry about mental illness. I worked under the table cleaning houses, travelling whenever I could. After two years I married the young German man I was living with and got my work permit. I landed an excellent job at the Max Planck Institute for Human Development. In the summer of 1984 the institute asked me to attend a conference in West Germany on my own as a member of the Betriebsrat, a kind of internal watchdog for the institute, with something like a union role. This conference brought together Betriebsraten members from across Germany, and it was an honour to be asked to represent my workplace.
My German was very good by then. But when I was wrangled into presenting complicated findings from the week’s working meetings, I felt like the lamb led to slaughter. The pressure was intense, and I found myself not sleeping, walking the halls, then tossing and turning in bed and then up pacing again. Underlying all this was an increasingly unhappy relationship with my husband. I was a wreck by the end of the week, not able to think straight, totally at a loss. I made a mishmash of presenting the group’s findings in front of a crowd of two hundred and then collapsed in a sobbing, ranting mess. Someone drove me the three-hour drive back to Berlin because I wasn’t fit to get on a plane. From there on in I just got worse. A week later I was going to the doctor’s office to get injections of an antipsychotic drug, Haldol, and about three weeks later I was an inmate at the Schlosspark hospital.
This first experience of psychosis with delusions and hallucinations was a surreal nightmare. Emotionally I was petrified—and soon physically petrified as well, as the side effects of the medications slowed my reflexes and made me feel as if my body was slowly turning to stone. I met with the staff psychiatrist regularly. He was never arrogant or condescending, nor was he intrusive or threatening. Our meetings were always one-on-one, and we usually met in his office, unlike at the hospitals in Toronto, where there is almost always a small group of doctors peering at you while you’re sitting uncomfortably on your bed. Other meetings at hospitals here in Toronto sometimes took place in small conference rooms, and again there was always more than one doctor present and I always felt intimidated. When I told my psychiatrist in Berlin that I didn’t want to go to group therapy, instead of badgering me, he immediately suggested I join a music program instead, and that worked wonders for me.
My brother Larry came to stay in Berlin for a few weeks as soon as he could get there. He saw me at my worst, before I was hospitalized. In November 1984 my parents came over, and I remember our many walks on grey autumn afternoons through the palace grounds behind the hospital. In December, after two months and countless visits from friends, I was released. By February 1985 I was in a deep depression, and my brother Dan came to visit and took me swimming almost every day. By the end of his stay several weeks later, I was finally coming to, shaking off the vise of blackness that had me in its grip.
One of the most important pieces about this story is that the German doctors deliberately chose not to diagnose me with anything, despite knowing of my family history of mental illness. Instead, immediately upon my release they embarked upon a plan to have me weaned off the antipsychotics over the course of a year and a half. When I was completely off those drugs I wasn’t on any other mood stabilizers or other medication. For the following thirteen years I was drug-free and incident-free.
I know they’re following my every move, my every thought. I can tell. I know better. I have to get out of here. Don’t want to sleep. The staff will get me in my sleep. That’s why they always push the extra Ativan—to knock me out. To study me and then do away with me. The windows in my room look out onto tall buildings full of people studying me and controlling me. I’ll give those nurses a little wave. To let them know that I know . . .
The choir is singing in my head—constantly singing at the back of my head, bluesy gospel-like singing, call and response. I know it’s been put there by friends to help me, to soothe me. Also to guide me to action. I hate that it’s there all the time. When it’s not the choir, it’s an Aboriginal drum circle sent to comfort me and let me know that people are thinking of me. But I can’t stand the constancy. It doesn’t let up. I don’t want anyone to guide me. The worst thing is that sometimes the bad guys—doctors, scientists—try to imitate the sound of the choir or the drums. But I can usually tell the difference in a few minutes. Everybody’s inside my head pulling me every which way all the time.
In 1985 I left my German husband and within a year was involved with a young visual artist from Sudan. In 1988 I became pregnant and decided to move back to Canada the following year. My partner stayed behind in Berlin until 1996, when he was able to follow me to Toronto. (He returned to Sudan in 2002 and remained there.)
In 1997, I was rehired as an ESL lead instructor with the Toronto District School Board after a temporary layoff of nine months. During the layoff I had found a less interesting but still demanding job, and I was trying to ghostwrite a biography of someone at the same time. With the switch back to my regular work it was all too much. I soon became manic and then delusional.
This time I went to Women’s College Hospital. There they diagnosed me as being bipolar and as having seasonal affective disorder, and I was put on lithium. I remember my brother Dan bringing me music and a Walkman, and I would constantly walk the halls listening to The Best Hits of Van Morrison, and later in my room to Babyface. Nobody seemed bothered by my constant rounds of the halls, and I remember that the nurses seemed friendly.
The following year stress led me into sickness once again. The Mike Harris government had decided to close or amalgamate many hospitals or hospital departments, and the psych ward at Women’s College Hospital was closed. Instead I had a horrible seven-week stay at the Clarke Institute, precursor to today’s CAMH, or Centre for Addiction and Mental Health. The doctors at the Clarke couldn’t figure me out. Despite the lithium, I continued to struggle with psychosis. I felt like I was left pretty much on my own. Soon, I started acting up on the ward, pacing constantly in front of the nursing station, yelling that my brother Dan had told the CBC about me and they were following my plight and the doctors had better take care of me. At the same time, I believed that O. J. Simpson was coming to Toronto to see me for a match of the wits where I was going to tell him off. It was just after his trial, and while I believed that he had rightly been acquitted given the missteps of the LAPD, I inwardly felt he was nonetheless guilty. I was a mess and not getting much attention from any doctors.
My family complained formally, with a written letter, about inappropriate care. The doctors finally put me on a different mood stabilizer, Epival, plus the antipsychotic olanzapine. Still I believed that the outside world was paying attention to my situation, and I continued to march back and forth every day in front of the nursing station. Finally I tried to bust out past a security guard posted at the door to the ward, and because of this, staff insisted I be put on a Form 1, committing me to the institution for seventy-two hours. I refused to sign the papers and was locked in a small room for three days. My parents came down every day begging me to sign. I finally capitulated. Being on a Form 1 meant I could no longer leave the ward at all, not even in the company of family or friends. I was very upset about the whole situation. Three weeks later, though, my mental state had improved and I was deemed well enough to leave the Clarke under directions to continue with my medications. Six months on olanzapine saw me gain thirty pounds. A common side effect, the doctors told me. I recently read that there is now a class-action suit regarding this drug, as many people became diabetic and suffered strokes due to the massive weight gain. I couldn’t stand it, so I took myself off the drug.
From 1997 to 2001 I continued working at the Toronto District School Board. However, my job—and those of many other colleagues—was about to be cut. I struggled with this, as I had been at the school board for almost ten years, but I eventually found work at the Canadian Race Relations Foundation. The atmosphere there was politically charged and stressful, and I became unwell and eventually had to leave the position. The following year my father died, and then I found a temporary job marking Grade 10 literacy tests for the Education Quality and Accountability Office. With the extreme stress of this job and the loss of my father, I found myself once again on unstable ground.
Between 2004 and 2010 I was hospitalized five more times, each time at Toronto General Hospital. I switched from Epival back to lithium, and the antipsychotic of choice had become risperidone. Although perhaps not as nefarious as olanzapine, it still caused weight gain along with the usual numbness and slowing of the mind.
In the summer of 2004 I was an outpatient in a group therapy program at Mount Sinai Hospital that caused me a lot of grief and anxiety, and at the same time I was not yet on disability so did not have the money to pay for my next set of prescriptions. I would take what medication I had left only every second or third day. Of course, chaos ensued within a week or two and I was hospitalized again. A few other times, I reduced my antipsychotic medication on purpose in the hopes of going off it completely, wanting to be rid of all the nasty side effects and extra weight. I never tried to go off lithium, as I felt it was my baseline and didn’t mess with my mind or my weight. But the overall common denominators were always extreme stress leading to lack of sleep, followed by increasingly erratic behaviour.
Sick again in 2010, I paid another visit to the hospital. I no longer remember what propelled me there, except that I was once again delusional, and as my family insisted, I didn’t really have a choice. I couldn’t look after myself at home, and it would be too difficult for my mother or anyone else in the family to look after me, either. Even though I was deeply resentful and scared, I never truly resisted going back to the hospital, perhaps because deep down I knew I couldn’t function on my own and needed help. My family was always there for me, visiting me regularly during my stays, meeting with doctors and frequently checking in on me when I came out. I cannot stress the importance of family involvement in the healing process and of making them aware of the resources that are available (to name a few, CAMH and in particular its Workman Arts project and its Empowerment Council, the Mood Disorders Association of Ontario, Across Boundaries, the Gerstein Centre, the Canadian Mental Health Association, Sistering and the Creative Works Studio).
As usual, as soon as I got into hospital I felt like I was stuck in a prison and wanted desperately to get out. Programming cuts meant there wasn’t much to do during the day. Watching television only fanned the flames of my various conspiracy theories (I believed the newscasters could all see me and read my thoughts; that the other programs were all about me, but were also often mocking me). I did a fair amount of lying around. I felt very strongly that if I lay on my right side, I was offering resistance to the system. Along with refusing to eat most of the time, it was for me a way to give a finger to psychiatry. When I lay there, I could feel the eighth floor and all the people on it tense up and prepare for battle. It never took very long before a group of nurses would come down to check on me, eyeing me. They didn’t say so, but their fake smiles and cold, hard eyes yelled at me that I was acting out and was to stop. When I wasn’t lying around in protest, I made use of supplies from the art program that had fallen victim to Harris’s mania for cost-cutting.
Art lends itself easily to my maddened mind. In the early stages, my mind is too erratic to focus on reading, writing or puzzles. During my 2010 stay at the Toronto General Hospital, I made one painting for each of my family members, flinging and dribbling paint about in my best Jackson Pollock mode. I was sure staff was hostile to my whipping brushes in the air, but my mind was jumpy and well suited to the frenetic activity. While I created, I thought about how I hated the condescending head doctors. Most of the nurses weren’t much better. It seemed to be all about robotically lining up to take my meds and eat meals in silence with others. I often felt locked in a power struggle with them. I wanted out.
On a grey late-December day, as I splashed more paint on more paper, I figured out that the easiest and most sensible thing to do would be to watch for a group of people leaving the ward and hide among them as they filed through the ward doors and onto the elevator. I got ready, and an hour later that’s exactly what I did.
Time to run. Mom’s coat is too small but there’s nothing else. Go. Go down the hall. Try to be normal. Grab my paintings. Go through the door, quick, with the others. Out! Fast! Before they see. People I don’t know in the elevator. They’re all watching me. I can’t remember if I’m supposed to look up or down when the elevator is going down. So many rules. I can’t remember them. Who made them up? The people who made them up, how do I know if they’re on my side?
So now I was making my getaway. I had escaped from Women’s College Hospital years before. Here I was again, zigzagging in my mind, trying to discern the best way to get out and stay out. On the ground floor I strode towards the main doors, not wasting a step. Big, wet snowflakes greeted me, floating down from a darkening late-afternoon sky. I stepped outside with an armful of newly minted paintings slapped carelessly at my side. College and Spadina were crowded in the afternoon rush hour. I stuck out my tongue to taste the snow, and it felt fuzzy and soft as it melted in my mouth. The coat my mother had left me was thin and too small for me to do up over my risperidone-bloated body. It was no match for the frigid January air.
I stumbled east along College Street. My paintings kept slipping out from under my arm and I watched them transform themselves yet again as they met with snow and slush. I kept looking over my shoulder for the hospital workers I was sure would be coming after me.
It’s cold out here. Where am I going? Head east on College. The paintings are floating away from me. Somebody must be calling for them. Where am I going? Dan’s. Dan won’t want me. Mom’s? She’s old. She’s my only ally. Walk in the middle of the sidewalk? Walk left or right? I don’t remember. They’ve told me over and over again. But I always forget in between. Left foot first, going uphill, keep your head down. Right foot first, going downhill, keep your head up. What to do on a flat stretch?
There is a sea of people floating around me, all talking to me. A hundred voices. Think this, think that. “Oh, there’s that woman everyone’s talking about. She’s certified . . . Who do you think you are, wasting our time? You’re not working hard enough to change. Walk left, no, now right. Walk. Just go.” Where am I going?
I trudged along, my feet thoroughly soaked in cheap runners. I wanted to go home, but I didn’t have a key. The nurses had taken my personal belongings. I wondered if I could walk to Don Mills, where my mom lived. I was agitated. Always, in my delusional states, I know that everyone is talking to me, signalling things to me with what they’re wearing, what they’re saying, how they’re gesturing. It’s as if the whole world is in my head telling me what to do. My solitary walk eastward through the late-winter evening was filled with pressing people, pressing messages.
I found myself at Sherbourne and Wellesley. I went inside a dingy coffee shop, but didn’t order anything. I sat at the back, my brain chattering as much as my teeth. I was still worrying about how to get home, wondering if people were following me. The woman at the counter made me nervous, and I tried to figure out if she was with me or against me. I had decided that the City of Toronto was tired of me, tired of me not learning my lessons, tired of the entire ruckus that happened when I was in hospital, tired of me not being able to see the truth. And it was true, I couldn’t see the truth. My mind was a constant to-and-fro, not knowing who to believe, not knowing who had my best interests at heart. The conspiracy theories continued to mount, and before long I had decided that the counter help was an enemy. I crawled under the table, huddled up against the wall. The woman at the counter was clearly avoiding me, and it wasn’t long before a small group of paramedics and police officers entered the premises. I was terrified at the sight of them and stayed put.
“What are you doing down there?”
“Hiding.”
“Who are you hiding from?”
“You.”
“But we haven’t done anything to you.”
“No, but you’re going to.”
“No, we’re not. You can’t stay there. You have to come out. Nobody will hurt you.”
They asked me other questions. Speaking in firm, insistent tones, they moved the table away from me and coaxed me out. They told me they were taking me to St. Mike’s Hospital. I was confused and jittery, but still I managed not to tell them that I had just run away from the psych ward at Toronto General.
They dropped me off in the hive that was the ER. I sat unattended for a very long while, fidgeting away, swinging my legs recklessly like a child and wondering what my next step should be. Someone came along. She told me to lie down and asked me what medication I was on. I told her. She left. I lay there, becoming more and more absorbed by the frightening sounds of the hospital. She came back about half an hour later. I felt the steel of a needle tear into my arm. I wondered what they were giving me. She said the doctors would be here soon and then left me alone again. I was convinced that the whole hospital was planning to lock me up and put me in some kind of coma so they could examine and play with my brain. What was in that needle? I sat up, waited for the hallway to empty out a little and took off into the winter night again.
Those who are supposedly helping me on the outside say that I talk out the back of my head, swearing, screaming vicious vitriol. That’s why they hate me even if they say they want to help. I can’t control it. They keep trying to tell me how, but I’m always mixing things up. There’s too much in my head. It happens mainly at night, my yelling. That’s why everyone hates me. That’s why they’re trying to lock me up, drug me up and hide me.
I briefly toyed with walking down Queen Street to the Beaches, where my brother Dan lived, but I didn’t think he and my sister-in-law would let me stay. I really just wanted to go home to my co-op in Riverdale. Near Queen and Parliament, I ducked into a grubby little bar and sat down at a table near the door and by the window. Once again I was left alone. I was grateful. I stayed put at the table, but didn’t outstay my welcome. I was just trying to warm up, as I was improperly dressed for the weather.
Outside, the streets were now dark and relatively quiet. Snow was falling on top of snow, swirling in great big whorls like white lace—the winds had picked up. Taxis flashed by and I wanted to flag one down but I had no money. Besides, I was sure a bulletin had been put out to the taxi network not to stop for me. I waved, but every driver looked the other way. It was cold and I was moving slowly. Although my mind was like quicksilver, my movements were unsure. I was afraid of everything around me. Two guys grazed me as they passed. I was sure I heard them whisper, “Home base, ya gotta make it to home base. That’s where it is.” I wondered what “it” was and what I’d find at home. I turned homeward with renewed energy. I started noticing sirens. The cops were out to find me. Better stay off the major streets.
I’m trying to use the security button at the top of my head so that no one can hear or read my thoughts, but I can never tell if it works. If it does, I’ll be more protected and they won’t hear me and find me. I hear sirens, the cars, the blasts of horns, terrifying. Run, get off this path. They never told me anything about running. My paintings are all gone now, lost to the world. No choir, no art, no drums to help me. I wasn’t supposed to leave.
To get home I had to cross the bridge just beyond Queen and River. There was a couple standing at a streetcar stop. They looked at me intently as I passed and I heard them mutter, “It’s your goddamn mother.”
My mother is a goddess and right now she is convening a panel of gods and goddesses from many religions to deal with the question of me. Me, the mortal, but insane. She knew that I had been operated on at three months and that they had seen remarkable things in my brain. They inserted a chip to monitor my every movement and thought. Mom, the all-knowing. I loved to watch her sing to the birds all day in the backyard, to see her communicate with the animal world. The last time I was sick in summer the birds sang to me, the flowers, gay pansies and all whispered sweetly and the insects ground their way through my brain in a slow-motion screech about the impending apocalypse.
In actual fact I did have an operation at three months. I was having constant and serious ear troubles, and doctors recommended performing a double mastoidectomy in which they cut open both my ears and scraped them out. When I am mad, I always maintain that this was the first interference of scientists with my brain. When I am sane, I find it interesting to note the interconnectedness between delusion and reality. In fact, most of my paranoid delusions stem from something concrete that has happened in my life. It’s like someone has taken a jigsaw puzzle and tossed it in the air, letting the pieces fall where they may. That is my psychotic brain. Actual facts and events all cast about, tumbling about in my head, their now jagged and unfitting edges no longer in synchronicity.
I eventually found myself about twelve blocks from home, at the corner of Dundas and Broadview, taking refuge in the Coffee Time. It was late at night by now. I sat down at the back in the corner. This time folks weren’t so friendly. An old man came over waving his hands fiercely at me. He stuttered that I should get out if I wasn’t buying anything. He came closer. “Get out, lady. Get out or I call the cops.”
Keeping to the side streets, I made my way home, shivering, and unsure of what I would do when I got there. It was now about one in the morning. When I reached the co-op I went to a friend’s unit and banged on the door. She was looking after my cats and would have a key. She didn’t open and I could hardly blame her. But now I was stuck.
A dog barked as I passed through the laneways back to my unit on Logan. I thought about all the dogs in the park across from my unit and how they always seemed to be telling me to stop what I was doing and shut my mind up. This was unlike my cats, who gravitated to me when I was sick. They would nudge me, directing me to sit in a certain place or to look at certain things that they sensed had meaning and would be helpful with my healing. They would knead me endlessly and then curl up and help keep me warm. I had one cat that lived upstairs and communed with the moon while keeping me company at night, and two cats that lived downstairs and watched over me there, while focusing on more earthly things. Between them, they tried to keep me on track, with their affection and guidance.
I want to go home and see the cats. They help me, the way they turn their heads. If they rest their paw on me, they tell me through their motions which way is safe to lie on the couch so that my thoughts can’t be heard or stolen or manipulated as easily. Which way to lie in bed to try to talk with different people in my head. Luna is left—my brother Larry, my mom and a few others. Magic is right for Dad, Dan, Malaika . . . Luna will be talking to all the other cats throughout the night in the co-op, updating them on our situation. Oscar is centre, the protector of the middle ground. They are love.
When I got to my front door, I pulled on the knob but it didn’t yield. There was a picnic table in the small front yard and I sat down on the bench and cried. I wondered what my father would tell me to do were he alive, but the vision of his warm, brown face faded quickly. I went to the door and called out to the cats, but I knew they couldn’t save me. I decided to brace myself up against the wall and do some yoga poses. I felt the hardness of the brick seep into me and give me strength. I stood there with my knee bent and my arms splayed, pressing into the wall for a long, long time. I was so frustrated that I had made it home but couldn’t get in. Inside was my sanctuary. I could crawl into bed and sleep. Except that within me there was still that knowingness, the deeper level of thought that reminded me that I probably wouldn’t sleep at all. I would be up all night cavorting around the place.
I began singing songs to myself. I loved Joni Mitchell’s “The Circle Game” and I had taught it to my daughter many years before. We would curl up in her bed and sing it to each other till we fell asleep. Later I would crawl back into my own bed, the song still like a lullaby in my head. On this late-December night, “The Circle Game” comforted me for quite a while.
I went and lay down on the bench and tried to rest. It was too cold and snow was blowing in my face and felt like little icicles pricking against my skin. I was so cold and weary. I went back to the wall and stood there again, stoically flattening my back into the bricks as hard as I could. I continued this back-and-forth until finally I could see that the eastern skies were starting to lighten. I decided to walk up to the Danforth to see if the Tim Hortons would be open. I walked up the hill dreaming of coffee. But I didn’t know how to get a hold of any money. I swung open the side door at Tim’s and sat down at the nearest table. It wasn’t long before a big, burly woman in uniform started snaking her way over to me. I didn’t even try to argue, I just got up and left. I cursed the fact that I had no money and I cursed myself that I didn’t have the gumption to find any. I cruised on foot along the Danforth, peering into windows along the way, till I reached Broadview. I had no place to go. I had to go home.
Back at the picnic table in front of my door, one of my neighbours stepped out. We didn’t really know each other. He looked at me for a bit and asked if I was okay. I shook my head no. His eyebrows were raised and he stood there for a moment silently. Then he said, “Come on in.” I followed him up the stairs. His girlfriend was sitting on a chair at a desk, typing on a laptop. They invited me to sit down. But the woman kept looking at me like I was some kind of animal and I was sure she was typing nasty things about me. I was very uncomfortable and after five minutes, I jumped up and went back outside. Fifteen minutes later my downstairs neighbour opened her door and yelled out my name. “Karen, here you are. Come on in. Have some tea.” She pulled up a chair for me. The apartment buzzed with the sound of kids getting ready for school, a dog waiting to be walked, people getting ready for work. It was just after seven. I sipped on my tea and sat quietly. My neighbour also sat at her computer, and it looked like page after page of names of companies, associations and people were flying by on the screen. I thought these must be some of my supporters and she’s showing me that they’re here to help. But instead, half an hour later the doorbell rang and a dear friend of mine stood there with her arms wide open. “We’ve been looking all over for you, Karen. Dan is on his way.” We hugged for a few minutes in silence but my mind was hissing. Christ, I thought. It figures. I knew that Dan would take me back to the hospital, and at that moment I hated him for it.
If I could go home, I could at least be myself again. I think. On the TV they watch me, too. The newscasters see my face, my actions, read my thoughts. They’ve hacked my email. There is nowhere safe.
Ten minutes later, my brother Dan showed up. “Hi, Karen. Are you okay? We’ve been looking all over for you.” I nodded my head. “Come on, Bev and David are waiting for you in the car.” I had survived the hospital many times before and I would survive it again.
Again, a profound inner consciousness tugged at me, and it registered somehow that I indeed couldn’t make it on my own and needed help. I just wished it didn’t have to be the hospital.
On a number of occasions my elderly mother had taken me into her home when I was at my worst, or she had come to stay with me. But my behaviour wore her down in no time. There weren’t many options, so I didn’t struggle. I was very lucky to have family and friends who cared.
She’s been punching all kinds of names and numbers into the computer while I wait here drinking tea. Whose names? Maybe she’s watching me, too. They all hate me; just want to get rid of me. If I were in my place I’d just curl up into a little ball and try to block out the voices . . . What does Malaika know? Is she in on all this? One of the scariest things is everyone reading my mind so that there’s absolutely nowhere to hide.
When I arrived back on the eighth floor, doctors and nurses crowded around me and berated me. Because of my behaviour I was going into the intensive care unit—no street clothes, no phone, security guards pacing the hall, only occasional visitors. In short, lockdown. I felt like a child being punished. I fought and pushed and yelled, but to no avail. I was a voluntary admission, but sometimes you are not treated as voluntary at all.
There was nothing at all to do in lock-up. I couldn’t think straight yet, so I was lost in the nebulous world of my mind. Trying to sort out the voices in my head: who was a friend, who was a foe. How could their words help me to get out of here? Other people’s thoughts and directions intermingling with my paranoia. Family came to visit, and I would walk up and down the little hall with them, trying to stay with the conversation. I had pastels, so I drew a lot. Eventually the medication started to clear the fog, but I was more subdued than ever. After four or five days I was released back onto the general ward. I was happy, mainly because I knew I’d be able to go outside and smoke. My cigarette addiction was always worse when I was ill, and I don’t know how I made it through those days without smoking.
They’re lending me cigarettes and I know it’s crack. The Belmonts I buy at my corner store are laced with cocaine. But near the hospital they’re crack. I wonder how they do it. Why are they trying out all these drugs on me? Some of the patients are in on it and they give me their cigarettes, probably dope, too. They want to try mine because they know it’s coke. But I’m so out of it I can’t even tell the difference anymore. They can do anything they want. Nobody can protect me.
Being back on the ward meant I could wear real clothes again. Clothes are a marker of identity and security. There’s nothing worse than roaming the halls day in and day out with only a gown that you have to fumble with. But back on the ward there was also one nurse who I was certain didn’t like me. I was intimidated by her steeliness and her bossiness. When there’s not much to do, you walk the halls round and round again. One night I couldn’t sleep, so I decided to go up and down the corridors to wear myself out. While I strode purposefully back and forth I felt like raising my fist in defiance, but I didn’t. Years before I had paced the floors with a raised fist at the Clarke Institute and had gotten staff in a dither. In the confrontation that followed, I had tried to force my way past a guard and was slapped with a Form 1. Now I didn’t feel like pushing my luck again. I just wanted to walk. Nonetheless, this one nurse was not happy with me going round and round the corridors. Finally, she stormed over to me and said, “You have to go back to your room. I will not have you pacing the floors on my watch.” I was upset. My paranoia had kept me from sleeping, but I didn’t want to take even more Ativan. Sometimes I was afraid that someone would do something to me. I felt unsafe and didn’t want to be totally knocked out. The next day you would feel so hungover. I wanted to walk off my vexatious mood. But I was stymied and was too afraid to make a scene.
I found another way to resist: by fasting. My mind had told me that my ex-husband was fasting in Sudan so he could be released from prison. The people cluttering my mind suggested that I support him by joining him in this fast. None of this was true, but I decided to try it out.
White stands for my husband, Seif, in prison in Sudan. That’s why he hasn’t come back. I want to understand what happened to him . . . My brothers just shake their heads—they don’t understand. White is solidarity for Seif, who’s in trouble. That’s why the others want me to fast. To help him. They tell me to kneel down and pray to Allah for him at least twice a day. I try, on the bed and on the hospital floor, but it feels wrong. Once I hear his beautiful voice calling out to me, so fleeting, then gone. Canada won’t let him back in. They think he’s a terrorist. I have to fast with him.
I only fasted for two or three days at a time—drinking coffee, tea, juice and water. Then one of my visitors would bring in some snacks and I would start eating again.
Three weeks after my escape I went home, armed with new prescriptions for lithium and risperidone. I was subdued, tired and anxious to settle in and find my old self again. Going home after any kind of stay was always a blessing. However, it could take months before I would feel truly well again, free of paranoia and delusions. It was an arduous climb back to sanity.
I will always have concerns about my medications and will continue to wish I could just ditch them altogether. You might think that I would be happy to have medication that calmed my mind. You might think that I would see I’m not alone: my brothers remind me that they have to take medication, too, for their diabetes. But my medications cause serious weight gain and wind my brain function down into a slow-motion fogginess. And yet, each and every time I try to cut my doses, I run into trouble with paranoia and psychosis. For many years I was compliant. I took my meds because, as a single mother, I felt I owed it to my daughter to be as stable as I could be. Now that she has grown, I still toy with the idea of setting my sights on freedom from medication.
I often wonder what the ongoing treatment would have been like in Germany.
If I could set my own treatment plan, it would definitely involve weekly visits to my psychiatrist and with my fabulous visiting mental health nurse and maybe a round of psychotherapy with someone else. I feel that I would need the help of not only my GP but also support from a naturopath or homeopath. It would mean living with as little stress as possible and the unconditional support of my family as well as friends. That’s asking a lot in these busy times.
But I do have some good news. I have started on a newer medication that doesn’t cause weight gain. I’ve lost twenty pounds in a few months. And I’ve found a useful and pleasurable outlet. An occupational therapist I saw for a while helped me find my way to the Creative Works Studio. Here my passion to create outranks my fears and anxieties, albeit not without a struggle. Creative Works has provided me with a place to create, a place to go when I’m lonely and need to get out, as well as a place to go when my mind is full of ideas bursting to express themselves on canvas or otherwise. I am not trying to become an artist per se. I am simply trying to unlock doors to help the beauty of creating flow through my life more evenly, to let my inner voice soar in as many ways as possible. This distracts and soothes me from the regular paranoias of my mind. I recently took a hiatus from the Studio to finish writing a book. I missed it sorely while I was gone and am now making my way back in, slowly putting together paint and pieces of cloth and objects for a wall hanging, much like I am always trying to reimagine my life.
Is it surprising that I occasionally miss the bouts of hypomania? People who have never experienced them don’t always recognize that they bring with them such creativity and confidence and outright joy. However, I never miss the aftermath: the months of depression or the struggles with acute psychosis.
And I never want to see the inside of a psych ward again. It has now been more than three years since I was last hospitalized, which is something of a milestone for me. I am blessed with family and friends who care, with a visiting nurse and a good psychiatrist and the occasional help of an occupational therapist. I feel I have finally reached a place of some stability. From here I can reach out and become a healthier and more active participant in the mental health and wider communities. Sadly, this is still not true for many others who struggle with mental illness.