The Mickey Mouse Club

24 million people suffer from schizophrenia in the world. Neos Kosmos talks to sufferer Janet Karagounis about her life with voices and looks into the muddled world of psychosis


“It was really bizarre; I got locked up in solitary confinement for a while, till they assessed me (or high dependency as they call it). “I was there for four weeks until they finally let me out with the normal crazy people and that’s when a lady said, ‘Welcome to the Mickey Mouse Club’.”

The Mickey Mouse Club to you or I is the Monash Medical Centre, but for Janet Karagounis, it was rock bottom. A pivotal moment when the bad voices in her head won. Janet has schizo-affective disorder and was once labelled a chronic schizophrenic. She was told not to have kids and would be on medication all her life. In short, she had no hope.

It was a life sentence. I meet Janet in the offices of Voices Vic, an umbrella of Prahran Mission. Even with a small limp from a motorcycle accident suffered many years ago, Janet is one of the strongest people you’ll ever meet. Short red spiky hair, an eyebrow piercing and dressed in a black jumper and dark jeans, she makes a tough first impression.

But all that subsides with a cheeky smile she shines your way, and the fact she’s chasing after an energetic little kitten in her office. She tells me the kitten is a gift for her father, a new edition to the family home to give their dog a bit of company. Nothing about Janet now shows any signs of the life she once lived. At her worst, Janet couldn’t see past her voices.

They engulfed her. “I used to do what the voices told me to do,” she starts. “I was writing on walls, decoding conspiracies, breaking down formulas. “I used to decode newspapers; the television would talk to me. A bit like how people do cryptic crosswords and Sudoku’s, I was doing that with the newspaper articles. I would read them and say ‘there’s a message here for me’. “I was a spy.” Not far behind one of the most famous sufferers, John Nash, the Nobel laureate whose life was depicted in the film A Beautiful Mind. It is believed at least four per cent of the population hears voices, sounds or auditory sensations that other people can’t.

While many are distressed by the experience – and typically are diagnosed with schizophrenia or other mental illnesses – some are able to deal with them with the right help. Professor Christos Pantelis heads the Melbourne Neuropsychiatry Centre and has been working as a specialist for more than 25 years. In his work at Sunshine Hospital, he treats some of the most severe cases of schizophrenia.

He sees the traumatic experience of psychosis every day in his patients. “The experience of coming into hospital can be a very frightening thing for someone having these symptoms, particularly because they don’t appreciate that they’re actually unwell,” he tells Neos Kosmos. “Because these experiences are so real to them, they often don’t understand that they’re having a psychotic breakdown.”

For sufferers, levels of psychosis can differ, and mild cases can be maintained with medication and therapy. But the flow on effects of the condition are numerous. Many can be dual diagnosed, with the condition having associations with depression, mood and personality disorders. High levels of drug abuse, especially with cannabis and stimulants, have been found to exacerbate and prolong symptoms too.

Sufferers have shorter life expectancies – about 12-18 years – and experience some of the poorest socioeconomic life outcomes, including high unemployment rates and higher suicide rates. Many deal with the condition differently. As Professor Pantelis has seen, schizophrenia is not just about hearing voices, but includes delusions and incoherent thinking.

“The voices are often heard coming from outside the self,” he says about the experience. “People think there are people out there talking to them, or talking about them often, or commenting on what they’re doing. As you can imagine that can be very distressing and upsetting.” Other symptoms include loss of motivation, apathy and social difficulties, which affect their families and carers as well.

For Janet, her voices initially were never a problem. As a young child she struggled to make friends, but that never left her lonely. The voices were a form of comfort and companionship, talking to her and guiding her. “I was happy in the sense that at recess I’d go and sit on a log and talk with my voices,” she says. “The voices didn’t interfere at school, they didn’t interfere with my time.

They’d talk to me when I wanted to talk to them. And they were very spiritual is the best way I can describe them.” At a young age, she didn’t question the voices. She accepted them as a natural occurrence and believed everyone spoke to their voices. It was only in her teenage years that she understood her interactions were not normal. Mixing in the wrong crowd in her 20s pushed her over the edge.

Living with criminals and drug dealers after leaving home made her condition spiral and she was plunged into deeper levels of psychosis. “When I lost my innocence my world started to turn. The voices started to turn very negative and problematic.” “I had no hopes, no aspirations, no dreams. The good voices never went, but the voice was very low. It got hard to hear them.” After being hospitalised many times, Janet moved back home with her parents, overmedicated and docile. “The medication was really traumatic too,” she explains.

“I was walking into walls, drooling, very docile. They’re very good for stopping your emotions; they’re an emotional block.” As a consequence, the ‘block’ was something her family also felt. During that time, her mother Julie was diagnosed with cancer. Heavily medicated and emotionless, Janet never shed a tear for her mother, who she loved dearly.

Although, her mother’s words and guidance would make her wake up and finally seek help. “My mum said to me, ‘are you taking your medication?’ I said ‘yes mum, but why?’ She said, ‘are you taking double?’ then looked at me and said ‘I’m dying, but you’re dead’… That was one of the last things she said to me.” That was a turning point for Janet. She started going to Prahran Mission, met with other sufferers and began to open up about her condition. Voices Vic was created in 2009 and is a consumer led initiative of Prahran Mission.

As part of the Hearing Voices network, it aims to support people to understand their voices and change the relationship they have with their voices. By doing so it hopes to give people the chance to be in control and get on with their lives. It works in conjunction with a client’s medical treatment and gives them an outlet to meet like minded people. The initiative has since blossomed and helps over 800 people within 20 different groups in Victoria alone. Janet owes her life to Voices Vic and the Prahran Mission.

Starting out as a client, she is now the network coordinator of Voices Vic and mentors people just like herself. Asking her about her amazing progress, she’s quite humble about it all. “I don’t believe in luck. I believe in opportunities,” she said, “no one was going to come with a magic pill, if I wanted to fix my life I was the one that was going to have to do it; that was the honest truth.” She is now relatively voice free, and if they return, they are like a warning sign for her to take a break.

To her clients and other sufferers she wants to promote a civil relationship with their voices. “The voices don’t have any power except the power you give them,” she explains, “the voices don’t have to sleep, they don’t have to eat – you do, you’re human. You need to look after yourself. Talk to your voices respectfully. To change the relationship we need to talk respectfully.”

For those who would like to know more about Voices Vic, call 9692 9400 or visit the website at www.voicesvic.org.au.