6 minute read
Humanizing Schizophrenia
Customers buzz through Tim Hortons with their Roll Up the Rim defeats and victories.
Peter Karolev comes in with his torn “winner” rim for a coffee, and his wife Sherry opts for a carrot muffin. I sit with them at the quiet back table and watch their back-and-forth dynamic. The two have been married since 2015, and both live with schizophrenia.
“Sobriety saved my life—and him, this guy right there,” Sherry Karolev tells me as she points across the table to Peter. “If not for him, I would probably be dead. He cared enough to take me out of the cracks, and he never takes enough credit for it.”
“Hey, my credit is pretty good. I got a new car yesterday,” Peter laughs.
“Not that kind of credit!” she retaliates, laughing.
When John, Sherry’s first husband, died, Peter was there to make sure she maintained her sobriety. He didn’t want her to wind up as another statistic. “By chance, we fell in love. Now here we are,” Peter adds.
The pair is light and full of life; I can feel Sherry’s radiating humour the minute I sit with her. She shares her funny stories at Canadian Mental Health Association (CMHA) events to get others to smile and laugh with her so they can see that there is more to life than the dark moments.
“You’re not stuck in the way you feel right now. It does get better,” Sherry says, now 16 years sober.
“But he’s been drunk this whole time, so he doesn’t remember,” she nods over to Peter.
“I don’t know what you’re talking about,” Peter slurs, pretending to be drunk.
They say if you can’t laugh at yourself, you can’t laugh at anything.
Sherry’s sense of humour used to get her into trouble, especially when she was 15 and staying at a support facility for eight months.
She was always getting into trouble with the other girls, fighting them and finding fun in playing pranks on them.
“One time, I was taking a shower —I made sure I went first—I had it all planned out,” she says. “I got into my housecoat and slippers and then, while the other girls were getting into the shower, I pulled the fire alarm. Oh they were mad, and they knew it was me. It didn’t bother me any.”
The staff put Sherry into solitary confinement for three weeks, saying she was a danger to herself and to others.
“The program didn’t do anything for me because I wasn’t ready to follow it. I was too angry inside to follow anything,” Sherry says.
It wasn’t until Sherry was sent away to the London Psychiatric Hospital (LPH) that they finally diagnosed her with schizophrenia.
“I was relieved, actually. I knew something was up, I just couldn’t figure it out,” she says. She spent 14 months at LPH before moving to the teen girls home for two years.
Getting used to outside living was a challenge. “It was awkward because I had been living in hospital for so long, they had to deinstitutionalize me,” Sherry explains. “At least I loved the teen girls home right from the beginning. We pulled up to a house with no sign, and no parking lot or fence with locked doors. It was just a regular home,” Sherry tells me. She says this worked for her because she had already gone through the institutionalization; someone who needs structure would need hospitalization before a home like this one.
Aside from staying sober, finding the proper balance of medication is key to balancing the thoughts, Peter explains.
“When you first get to the hospital, you think everybody else is wrong. By the time you get settled down and your brain starts to work again you realize, wait a minute, something may be wrong with me after all.” Peter says his parents tried helping him for years, but time is the best healer. With time comes advanced research, knowledge, new medications, and finding what works for the individual.
“A lot of people think schizophrenia is multiple personality disorder but it’s not. You lose touch with reality. You’re either living in the past or thinking too far ahead and have a hard time managing the present,” Peter explains.
Peter still takes medication but doesn’t see a psychiatrist. Sherry works with both, because she is on a lot more medication than Peter is. It’s all dependent on the individual’s needs.
Now, with a new balance of medications, Sherry is more animated than ever, Peter says. She enjoys her time spent with her sons, Matthew and Jason, and she volunteers at CMHA. She even received the 2008 Volunteer of the Year award. Sherry’s creative humour is currently being immortalized into her memoir, Sherry: Life, Love, and Recovery. And she says she’ll charge me the bargain price of $100 when it comes out.
Rebecca Chamaa, a writer and advocate for the mentally ill, says that she is an avid proponent of medication. “There are a lot of anti-hospital people, but hospitals have saved my life over and over again.” Rebecca lives with schizophrenia and speaks to the enhancement of her own life due to medication. She now has the high-functioning stability to be able to use multiple journals daily to direct her thoughts through mindfulness training.
“Journalling has helped me to recognize this catastrophic thinking. I’ve found that with any mental illness, getting out of your head is one of the best things you can do,” she says.
When Rebecca was first diagnosed, she carried the degrading stereotypes that her culture had given her about schizophrenia. “They’re so shameful and dehumanizing. It is shattering to your self-esteem and you have to build from there.” She feels people with schizophrenia have been left behind in the current progressive movements. She asks that we all be mindful of the myths we’ve been told, and to watch our uses of the words “crazy,” “lunatic,” and “psycho.”
“The reality is, I have to fight to be seen as human. I have to fight to be just like you. But I’m more like you than I am different from you,” she says.
Rebecca authored a workbook for those living with mental illness, so that they might build their self-confidence through writing prompts and tasks. It can be found on Amazon. She also blogs at www.ajourneywithyou.com
In terms of local help for people living with schizophrenia, Dr. Pat Montaleone, a physician and specialist in psychiatry at Hôtel-Dieu Grace Hospital (HDGH), offers insight on Windsor’s facilities.
He is involved in Assertive Community Treatment (ACT) and the Wellness Program for Extended Psychosis (WPEP). He also does home visits and videoconferencing to rest homes in the city and county that have a large proportion of people with schizophrenia.
“There is still a lot of room to improve in the care. As is commonplace in healthcare in today’s political climate, funding and resources are scarce. Wait lists for these programs are much longer than ideal,” he says.
He adds that more supports are also needed for their psychological and social well-being, such as programs for employment, education, housing, socialization, peer support, and crisis and family intervention.
However, our growth is burgeoning in terms of mental health education, thanks to the undergraduate medical education in Windsor, and most recently with the addition of a psychiatry residency program through Schulich. Windsor is becoming a highly desired destination for those who are pursuing medical education in psychiatry.
Dr. Montaleone says, “We can all help those with schizophrenia by being positive mental health advocates. It involves building communities that fully support those with mental illness, regardless of someone’s individual needs.”
There are many treatment options for people with schizophrenia, he explains. While each case needs to be addressed for its individuality, most first-episode cases of psychosis should be referred to the First Episode Psychosis program at CMHA, which is a threeyear case management program. For additional case management, options include CMHA, the WPEP at HDGH, or ACT, which is available to those with schizophrenia with complex needs or who are at risk of homelessness.
Mental disorders are caused by a combination of biological, psychological, and social factors, known as the biopsychosocial model of mental health. Schizophrenia is an illness with varying presentations and severities, which affects about 1% of the population globally. There is no single cause, but there are factors that increase risk, including a family history of schizophrenia and substance use.
“If you or someone you know is exhibiting uncharacteristic social withdrawal, or odd thoughts, emotions, or behaviours, please seek psychiatric assessment, as early intervention is key to prognosis,” he says.
Most people with schizophrenia die 10-25 years before the average population. These statistics are influenced by misdiagnoses, substance abuse, and other ways people try to medicate themselves before receiving proper treatment. One of the biggest myths around the illness is that it isn’t treatable, and though there is no cure for schizophrenia, education, early treatment, and diagnosis can and does increase the chances of recovery—whatever that person’s unique version of recovery looks like. D.
By Alley L. Biniarz
Photography: Fernando Paz
