Holly Symonds-Brown and Leif Gregersen met in one of Holly’s classes when Leif spoke about his lived experience of schizoaffective disorder and its treatment. A friendship developed and they decided to record their shared experiences.
Holly: It is the late 1980s in Edmonton. I am 18 and working full time as a psychiatric aide in a large provincial psychiatric hospital outside the city with 12 buildings full of people diagnosed with mental illness. The campus has beautiful grassy fields within a boundary of tall, thick trees. After only eight hours of orientation to psychiatry, I spend most of my time “sitting constant” with people who are suicidal or have eating disorders. Every unit has its own culture: some are chaotic and unpredictable, others are slow and monotonous. People stay here for a long time—months, even years. They tell me of the various reasons they were brought here, including hearing impairment, Huntington’s disease, promiscuity, acts of violence, episodic voices of God or Satan, ideas of magic, paranoia, euphoria and deep sadness.
My job is to observe and monitor each individual as they are. It is hard to see them existing beyond the unit setting; this place is like a community. For some it’s the only form of home they’ve known. Still, I hear whispers of other places: the farm, a bus to Whitby, the community up north, the parent/partner/friend who is missed.
It is hard to see people existing beyond the hospital setting. For some this is the only form of home they’ve known.
Leif: It is 1990 and I’m 18 years old. I have a home, a school, friends, a hometown. More than that, I am part of a community. But I have lived my life under the dark shadow of mental illness. My mom requires hospitalization for severe depression; my dad’s drinking makes my home almost unlivable. Somehow I’ve managed to carry this weight while holding down jobs and buying cars, motorcycles, clothes and video games.
I have experienced severe, crushing depression for most of my teenage years. I’m under incredible stress, going to school during the day and working night shifts at a grocery store. Home life is even worse than my toxic workplace. My dad has grown angrier, more violent and less logical since I became old enough to move out, even though I’m not done high school. As this pressure cooker heats, I begin to show the classic signs of bipolar disorder with psychosis, and later, symptoms of schizophrenia with severe anxiety. One day I pick a fight in school and am non-compliant with the school administrators. When the police arrive, I fight with them too. There are no more options: I’m taken to Alberta Hospital. My hopes for the future shatter at once. I’m locked up, heavily medicated, disconnected from everything around me.
My hopes for the future shatter at once. I’m locked up, heavily medicated, disconnected from everything around me.
Holly: Five years go by, and I keep this job while finishing a nursing degree. After graduation I move to the US and start working at an inpatient psychiatry unit. Here the care is different: the people come in only for stays abbreviated by managed care. The units are locked. There are no grassy fields or recreational outings. The units are busy, with a frenzied energy that comes from having people with mania and psychosis in a small space. Restraints and seclusion are regular occurrences, often exceeding the capacity of available seclusion rooms. People come in sick, are medicated heavily and sent out to community or day-hospital programs—or the street. They come back with signs of the outside: dirt from the street embedded in their skin, new drugs in their toxicology screens, new stories of relationships and struggle.
This, however, is the 1990s, “The decade of the brain.” We are all enchanted by the promises of new medications and believe in the potential cures. Like alchemists we tinker to find the right mix of medications, monitoring side effects and symptoms. We shape our patients through chemical compliance. Side effects appear more often than we’d like—but the pharma sellers convince us otherwise, so we tell our patients to eat healthy and give the medications time to work.
Leif:The hospital works a miracle. In just two months I go from violent, raving mad, delusional and psychotic back to “normal.” Sane, stable and as capable of functioning as I ever was. I find work at a factory but am unable to keep up. I blame the medication and stop taking it. I feel fine.
The feeling doesn’t last. I begin to hear radio announcers say grandiose things about me, like I have wealth beyond measure and movie stars are romantically interested in me. I think maybe I just need the discipline and structure of a military lifestyle to keep the voices at bay, like I had in cadets. The first Persian Gulf War is flaring up, and so I try to join the Canadian Army. I’m turned away because of my psychiatric records. I sell my motorbike for $20, close my bank account and hitchhike to the west coast. I meet new people, make new friends. I’m having the time of my life. But without medication the psychosis eventually comes back, and with a vengeance. After returning home, then spending another six months living in Vancouver, going hitchhiking and trying to earn a pilot’s licence, my illness returns. Hospitalization and more medication follow. I leave what little I have and return to Edmonton with nothing.
Once again I’m homeless, only this time in my own city while on a medication that leaves me debilitated. I run into people I went to school with and tell them I’m sick and waiting to get into hospital. They don’t understand that I’m mentally ill, not physically sick. Mental illness had never been part of our education. I can’t function, can’t work, and I have no money or friends. My reality is poverty, delusions and hallucinations. I hope another hospitalization will allow me to function and take away the voices and thoughts that torment me.
I’m finally ready to accept diagnosis and treatment after losing everything in my life that mattered, including home, friends, family and all my possessions. I wrongly think that if I quit drinking and go back on medication, then old friends will beat down my door to reconnect. Instead, I face extreme isolation and loneliness. Several times I give up on the world outside my apartment. I sleep for days. I don’t go outside unless I need food. For a time, I have no phone and disconnect the intercom to my apartment. Over the coming years I will go off medications several times, go in and out of the hospital system, attempt suicide and put my parents through hell. There seems to be no end in sight.
Holly: I’m working in adolescent psychiatry in a posh neighbourhood in downtown Chicago. My patients are almost all kids from what is considered to be the most violent neighbourhood in the US. Many of the young girls are diagnosed with generalized anxiety disorder, a diagnosis that means they worry too much. They also tell us they oversee getting three siblings and three cousins to school each morning, as mothers and grandmothers must cross the city by bus to get to work. I oversee teaching these kids about anxiety and medications. I teach them to reframe their “distorted” thoughts. They listen to me and sometimes smile with a wisdom I’m only beginning to recognize: They’ve been told this before. They know that in this clinical space we don’t understand what their home is like. That we can’t understand.
Two years later I move to outpatient psychiatry. I’m in grad school now, working on becoming a nurse practitioner. I work in an office building. Here the people I work with are “clients,” not “patients.” They come in voluntarily and sit in a waiting room quietly, then come to my office and sit in the comfortable chairs. They tell me how things are going, falling apart at times but in a more controlled way. There is a shift in power and control in this place. The keys I carry are different; there are no locked doors but there are disability forms and prescriptions. It’s hard to focus on the clinical pathways built by biomedicine that tell me what to prescribe first, second, then third. These paths tell me to diagnose symptoms and treat illness. The people in my office tell me of other paths and barriers.
Clients tell me about workplaces that are not accommodating of mental illness, of relatives that don’t get it, or of a lack of food or heat. I can hear the hollowness of cognitive therapy treatment and how disconnected it is from the problems my clients face. One day a client is reciting to me their symptoms of stress and alludes to the fact that they’re hungry. They tell me about their struggles to keep perishable food cold in the warm spring weather—they have no electricity. The $300/month they live on does not go a long way. A subsidy is available, but it requires navigating a bureaucratic space. We talk about strategies to cope. One day I realize that the best way to spend the allotted 50 minutes might be to go to the utility commission with a client. Coming back into the office I see a fellow trainee who asks me where I was and I tell him about the field trip. He smirks and asks, “Don’t you have any boundaries?”
This comment gives me pause—was this the right thing to do? At this point I’ve been working in psychiatry for 14 years and I’m not sure all my experience and training has made me that helpful. For many, the tinkering with medications and strategies for coping aren’t enough. The biomedical model of psychiatry is placeless; it situates all the problems within the individual and ignores the contexts in which they live. This revelation takes me in a new direction that coincides with a move back to Canada, where I find a role in community mental health nursing—working in crisis teams, home support and primary care settings. Much of my work here is creative, incorporating counselling and assessment skills with material goods such as a pack of cigarettes or a sandwich to help offset a crisis. I unpack clients’ moving boxes and help fill out rent subsidy forms. But this work isn’t highlighted on the charting forms or in workload reports that account for my time, so as funding is cut, so is my ability to do this kind of work.
Biomedical psychiatry situates all the problems within the individual and ignores the contexts in which they live.
Leif: Living on my own, money is constantly an issue. I move several times until I find a place I can afford. Rent is $160 a month for a shoebox apartment. I have a sink, stove, fridge, toilet and shower. My whole life must fit into 150 square feet. Money is tighter than ever. For my Christmas gift, I ask my best friend for a can of tobacco so I can save $25 for food and coffee. My mental health is reasonably good. I’m in remission. Most would describe me as weird; I’m not wealthy enough to be eccentric. Years pass and I wonder if maybe I’m not as sick as I thought. Without full knowledge of what could happen, I lower one of my medications without my doctor’s advice, which spells disaster. After a particularly unpleasant episode (which included running around screaming that there was a bomb in my apartment building), I have a short stint in the hospital. I’m released within a few days.
A series of mental health workers come to see me, but I convince them I don’t need to be hospitalized. Then one day I agree to go by ambulance to Alberta Hospital for an assessment. I experience a tidal wave of paranoia and am involved in a chase around the grounds of the hospital. I spend the next six months confined; time slows to a crawl. I sleep all I can, as mountains of endless, frustrating time tick by. I’m unable to focus on reading or TV and have no one to talk to. I’m living the hell of constant banishment to a seclusion room, for hours or days at a time, despite already being in a confined ward. I clash with my doctor. The staff don’t believe a word I say.
When finally discharged, I feel my life is over. I have only two people on my side: a kind social worker and my formerly abusive dad. I’m placed in a well-run, supportive group home. Then, for the first time, I’m not lonely or underfed. Fifteen years pass in the group home, and I’m given a subsidized apartment in another housing project. With the support of my dad and a strong desire to tell my story and somehow make some sense of all my suffering, I publish a book about my lived experience, get a job with the Schizophrenia Society and almost by accident find work as a teacher at the same hospital that once confined me. Finally I have come out the other side. But beneath it all I’m still sick.
Flash forward to 2024. I’m now teaching two classes at Alberta Hospital and will soon be facilitating a support group too. I write for magazines and pay close attention to the news. I regularly see reference to mental illness in the media. Recently in Edmonton, a 16-year-old shot and killed two police officers, then turned the gun on his mother, then himself. I learn he was the subject of a mental health call several months earlier. In response, the provincial government promises $8-million in new funding to crisis response teams for mental health calls.
I’m left wondering why more isn’t directed to prevention efforts rather than reacting to the fallout. I wonder why wait lists to see a psychiatrist or a counsellor are preposterously long, with youth often waiting up to two years. Too often, people reach out to me for help with loved ones who have schizophrenia or bipolar disorder. I don’t have solutions, but I know that prevention programs and support for meaningful recovery should be more easily available. When I was finally placed in a supportive group home, these got me through. But thousands of people in Alberta need this help, and we have so few places like this. Parents, young and old, are often the only ones advocating on behalf of their mentally ill child.
Only when I feel fully accepted as a member of society, my mental illness fully out in the open, will I truly feel I was right in returning from Vancouver—that coming home was the right decision.
Psychiatric care perpetuates placelessness—perhaps echoes of the asylum system that didn’t require people to have a home.
Holly: I am struck but not surprised by how long it took Leif to find his way “home.” My own reflections on working in the treatment system make it easy to understand why.
What is it about psychiatric care that continues to perpetuate a sort of placelessness of the people we diagnose with mental illness? Perhaps it’s the echoes of the asylum system that didn’t require people to have a home outside the institutional walls; that imprisoned people, away from the rest of the world. It seems ingrained in our practice to extract the person from their network, which limits possibilities for recovery and the “good life.” We work with some of the most structurally marginalized people. We must incorporate practices that include their sense of place.
Who we are as individuals and what we feel can both create place and be created in place. Home, then, is more than a house or apartment—it is a place of meaning and belonging, achieved by the careful arrangement of people, objects and ideas. These arrangements shift, and may be precarious, so they require constant attention and care.
Nowhere does the issue of place and belonging seem more relevant than in the current discourse around mental illness. In Canada it is estimated that at least one in five people experience a mental illness each year. Risk factors for poor prognosis and recovery include some of the social determinants for mental illness: poverty, trauma, social isolation and poor housing. Our continued focus on funding crises and acute short-term responses to mental illness does little to change the possibilities for people to find and keep a home and a place of belonging and safety. Our healthcare system needs to reconceptualize home not just as a simple address but rather as a stabilizing set of careful and meaningful social and material arrangements, a necessity for people living with mental illness.
Holly Symonds-Brown is an assistant professor of nursing at the University of Alberta.
Leif Gregersen is an Edmonton author and mental health advocate.
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