| Jamal Ali used to have regular visual and auditory hallucinations of Dracula, Frankenstein and werewolves. They’d say "kill yourself, kill yourself, life is not worth living." The voices were so loud they would make Ali shiver. He would hide under a blanket hoping the voices and visions would go away. Ali describes the experience as "mental torture."
"I suffered in silence. It was like living hell," he says.
Ali was diagnosed with schizophrenia at 25, shortly after he graduated with a political science degree from the University of Calgary. However, he didn’t go on medication or reach out to any mental health services for 18 years.
"When you’re a young graduate you look forward to a future filled with bright prospects and I couldn’t accept my illness… I was in a state of denial," says Ali.
For almost two decades he lived an isolated existence in his parents’ home. He didn’t see his psychiatrist regularly because he was afraid that if he did so he’d be committed to a "mental asylum" for the rest of his life.
"I believed that having schizophrenia meant you were insane and it was because of self-stigmatization and fear of the stigma in the larger society that I stayed home for a very long time in isolation. This isolation was very damaging to my mental health because I needed to connect with the larger society," says Ali.
Now Ali is an inspirational figure for anyone battling a mental illness. He’s not only fully functioning, but he’s involved in educating the broader community about schizophrenia, and he’s become an advocate for other people with mental illnesses.
Ali’s transformation began slowly. First, he started taking medication and he applied for Assured Income for the Severely Handicapped (AISH). Some people with schizophrenia experience negative side effects from their medication and have to try different medications until they find one that works. Ali was fortunate enough to find an effective medication right away. He says the medication lessened his auditory and visual hallucinations and made him feel "mentally well."
Ali then started to reach out to the broader community. In 2002, he became a member of Potential Place, a clubhouse for people with mental illnesses that helps people regain self-esteem, confidence and to build employment and social skills necessary to re-integrate into society. Members come to the clubhouse to work and to socialize with other people with mental illnesses.
"It adds structure to people’s lives, gives their life meaning, a feeling that they are contributing something to the community," says Ali of Potential Place, who calls Potential Place his very own "Shangri-La."
In 2004 Ali became a member of the Calgary chapter of the Schizophrenia Society of Alberta. He says the two organizations played a big role in his transformation.
"They have transformed my life for the better. If it wasn’t for these two wonderful organizations I wouldn’t be where I am today," says Ali.
At the Schizophrenia Society, Ali became a member of the Unsung Heroes program, which is a peer support group for people with mental illnesses. University of Calgary professor Barbara Schneider recruited Ali and other members of Unsung Heroes to conduct research on housing issues people with schizophrenia face in Calgary. The group made a presentation on their findings at a Calgary Health Region conference in 2006. Ali is also a member of the Schizophrenia Society’s Partnership Program, which teaches public speaking skills to people with mental illnesses. He has made public presentations on schizophrenia at high schools and in front of health care professionals and police. The Partnership Program also regularly performs a play about schizophrenia in front of various audiences.
Ali says public awareness and attitudes about schizophrenia, a very common neurological brain disorder that affects an estimated one in 100 people worldwide, are improving. He’s proud to be a part of this.
"The stigma is eroding away because people today are more aware of it than when I was first diagnosed in 1981," he says. "We start with young minds because the way I see it these young minds that we are educating in the high schools about schizophrenia they’ll be the future leaders who would help to completely eliminate the stigma in our society. When I talk to people about my experiences with the illness, it’s mentally healing for me. It empowers me, gives me courage and hope."
Ali says sometimes audiences have been brought to tears during performances of the Schizophrenia Society’s play Starry, Starry Night.
Ali has also become a community activist as a member of Vibrant Communities Calgary, a non-profit organization that advocates for poverty reduction. He helped lobby the City of Calgary for the creation of a low-income transit pass, which became a reality in 2005. He’s also a member of the Alexandra Writers’ Centre Society and has written articles for various publications. He says his active involvement in the community has been a major part of his mental health recovery.
"I take a holistic approach to my mental illness and wellness. Mental health practitioners only stress taking my meds. I go beyond that. I am busy with all the different organizations doing different activities," says Ali. "I feel good about myself. I feel like I’m achieving something. It gives me self-satisfaction and a sense of worth."
As an advocate for other people with schizophrenia, Ali has found there’s no shortage of issues to focus on. He says it’s extremely hard for people with schizophrenia to find suitable housing. Some landlords are reluctant to rent to people with mental illnesses. In some cases, as Ali discovered during his research project, mentally ill people end up on the streets because they aren’t able to access the help they need. Finding employment can also be a challenge, because some employers are reluctant to hire people with mental illnesses. Societal stigma against schizophrenia is also preventing people with the brain disorder from revealing that they have it.
"The courage to come and admit, acknowledge, that you have schizophrenia, it’s still a hush hush thing," he says.
Ali takes aim at the media for helping perpetuate stereotypes of people with schizophrenia. He says schizophrenics are regularly portrayed as violent when that isn’t the case in reality.
"A great deal of the stigma about schizophrenia comes from the media," he says. "When somebody with schizophrenia commits a crime they’ll mention their mental illness, but if a diabetic commits a crime would they mention their diabetes? No."
He wants people to stop immediately making negative associations when they hear the word schizophrenic. "We are people like anybody else and we are intelligent people. We are high achievers. We are nice people. We are compassionate. We are honest. We are productive. And we are not violent people," he says.
Despite how much his life has improved, Ali says he still struggles with his illness and sometimes still experiences hallucinations. Overall, he is currently extremely happy in his life. At times Ali is so enthusiastic he sounds like a motivational speaker.
"I’m on a journey of happiness and beauty. It’s the opposite of the misery and isolation I was living in for 18 years. My life has changed 360 degrees," he says. "I look forward to more beautiful times ahead and more vibrant years ahead and I know my destiny, a destiny of hope. I’ve seen hope and there will be more hope."
Ali is on a mission to deliver that hope to other people with schizophrenia who are suffering in silence like he once did. |
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