“Recovery is the journey. It is what you are doing now, whatever that is. Recovery is possible. You may have had so many losses, but your life can be so much better,” says Michele Misurelli, Coordinator of the Unsung Heroes Program at the Schizophrenia Society of Alberta, Calgary, Canada. She is also a member of the participatory research team at The University of Calgary that produced Hearing [our] Voices: A Participatory Research Study on Schizophrenia and Homelessness.
Michele and eight other members of the Peer Support Unsung Heroes Program at the Schizophrenia Society of Alberta, Calgary Chapter worked in collaboration with Dr. Barbara Schneider. All of the Peer Support Unsung Heroes Program members live with schizophrenia and have experienced housing instability. They conducted interviews and focus groups with 30 people who live with schizophrenia as part of the project. Their research examined the tension between care and control in the relationship between people who live with mental illness, and housing and medical service providers.
“Before I met Barbara Schneider, I had only given fingerprints, or watched lights on a computer. Research had always been done to us, as subjects. But I think that people who are living with the experiences of mental illness are the experts,” says Michele. After eight years of research, the group is now sharing their findings all over Canada through video productions, a reader’s theater, a photo voice project, a graphic novel, and a book.
“Barbara is a woman with a vision and she really helped to empower us and give us a platform. She helped us to articulate our needs and have a voice,” says Michele. She explains that their research gave her the self-confidence to speak out about injustices in the system. “It allowed us to put the pieces of the puzzle back together, rather than being taken apart. It allowed us to rebuild our lives with dignity and respect. By contributing to the field, we refuted that people living with mental illness just take up space,” says Michele.
Michele was diagnosed with schizophrenia in 1988, and has since traveled her own path of recovery through illness and health. For anyone living with mental illness, periods of illness do not unalterably define who we are, though they change our perceptions and affect our lives. It is a journey in and out of varying states of mind. This journey impacts many areas of a person’s life including relationships, housing, family, finances, employment, meaning, and self-esteem. Michele sees these challenging periods as filled with loss. “There have been so many losses with schizophrenia. I have lost education, identity, purpose, and friends. I have also had a chance to rebuild my life,” says Michele.
Initial signs of challenges to follow occurred while Michele was studying political science in college. She experienced fatigue, an unexpected drop in her grades, and a lack of motivation. Following a car accident and head injury, she began to fall asleep for entire class periods. She did not know what was happening to her. “I couldn’t understand any of it as I had always been a good student and eager to learn and I was sleeping adequately,” says Michele.
Following her first year of school at the university level, Michele began to experience hallucinations. She explains that the thoughts she experienced during this time are fixed false beliefs. For people who experience schizophrenia, these beliefs are usually associated with what the person is exposed to. Michele understands that because she was exposed to political science, her hallucinations and delusions were political in nature.
“I was very fearful of Russia, and I believed that communists were following me to class, placing bombs underneath my car. If I didn’t turn my car on, then I would be safe. It was like Russian roulette, and it was very illogical. My fears increased; they were unrelenting. One day I went to my car thinking that they were going to kill me, but the bomb never went off. At that point, I drove home and never returned to the university and never withdrew. I received failing grades in all of my courses,” explains Michele.
After leaving the university, Michele held a job but faced persistent hallucinations and fixed false beliefs. Eventually, she left her job and experienced a long period of severe housing instability. Michele isolated herself in her apartment. She recalls having no food, experiencing day and night reversal in which she would be vigilant all night with fear and sleep all day. Hallucinations that impacted all of her senses increased in severity. “I smelled skunks and perfume that were not in the apartment, and coffee that was not brewing. I didn’t even drink coffee. It seemed that my body was raised above my bed and that I had electricity flowing through me,” says Michele. She tasted, smelled, felt, and saw things that did not exist outside of her thought disorder. One morning she woke up screaming, believing that communists had performed brain surgery and torture with a pick through her ear canal. It was at this point that she called her mother for help.
Her diagnosis at the hospital led to anger and a frustration that the medical professionals were part of the ongoing conspiracy she understood to be real. She was placed on medications that she describes as horrible. “They made my mind blank. I was a like a catatonic mushroom. I just stared unrelentingly and nothing was happening in my brain,” says Michele.
For ten years following Michele’s diagnosis she experienced poverty, housing instability, an army of medications that did not work. She moved in and out of what she describes as “sick periods.” In ten years Michele was hospitalized seven times. Each time resulted in a release after ten days. She moved housing locations thirty times, from one unaffordable substandard apartment to another. “Rent took my entire paycheck. I lived in houses with mold and mice, in dungeons with no windows,” says Michele. She believes adequate housing is essential to success. She now lives in a house thanks to Habitat for Humanity. “If it hadn’t been for Habitat, I would not have gotten out of the places I was living,” says Michele.
Today Michele has found medications that support her cognitive functioning and her quality of life. Her daughter is 17 and is going to the university. Michele has support from family and friends and meaningful employment doing what she loves. Michele is clear to articulate what she wants from service providers: honesty, respect, and mutual decision-making.
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