by Karen Hill
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.