Schizophrenia Awareness Week
Awareness Week is an annual event held in May. It provides an
opportunity to raise community awareness of schizophrenia and mental
illness in general. We do this through a range of activities, including
information displays and events across NSW, a Symposium, and media
We organise a
range of activities for Schizophrenia Awareness Week designed to engage
different sections of the community. These include our Annual Symposium
and Annual Poetry & Photography Competition.
SAW Mailing List 2017
We prepare Information Kits for Schizophrenia Awareness Week containing posters
and brochures for display in libraries, health centres, neighbourhood
centres, GP offices and other venues where people will see them and learn a bit about schizophrenia. These will be posted out in April 2017.
SAW 2016 - Rotary Club Eastwood - Recognising Carers
The Rotary Club of Eastwood, in conjunction with the Schizophrenia Fellowship of NSW held its second annual Schizophrenia Awareness Week function to recognise the contribution of carers of people living with Schizophrenia.
Over 50 people, including many Rotarians from clubs around the district, attended the function held at the Brush Park Bowling club. After an overview of ‘what is Rotary’ presented by Robert Erskine, a Rotarian of 36 years, Terry Davies, Corporate Manager of Australian Rotary Health, gave a summary of the work done by the organisation, in particular the work related to their funding of Mental Health research.
Rob Ramjan, CEO of the Schizophrenia Fellowship NSW, talked about the support Rotary has provided for the Schizophrenia Fellowship and the importance of the Rotary Mental Health grants. He then spoke eloquently about the importance of ‘hope’ and how this can help towards recovery.
The MC, Dr John Berne, spoke briefly about each of the awardees and then the President of the Rotary Club of Eastwood, Narelle Barker presented awards to Dr Janet Gibson, Kevin Isaac and Liz Shevlane. Pamela Bruce will be presented with her award at an upcoming Rotary meeting. Each of the awardees received a certificate from Rotary and a donation of $1,000 was made on their behalf to Rotary Health. The evening was sponsored by Servier.
Read the individual carer stories of the four awardees Dr Janet Gibson, Kevin Isaac, Liz Shevlane and Pamela Bruce below.
DR JANET GIBSON
Janet Gibson’s brother was the remarkable poet, writer and performer, Rod Gibson, who became known as the ‘Poet Lorikeet of the North Coast.’
The two of them grew up in Mosman with their parents, and their other sibling, Mary Jane. Their father, Dr Alan Hugh Gibson, died when Rod was 18 and just a few years later, in his early twenties, Rod was diagnosed with schizophrenia. He dropped out of university, where he had been studying arts.
The brother Janet loved became someone who came and went from home; who ended up living on the streets occasionally; who spent time in doss houses, and in mental institutions. Once, he walked all the way to Liverpool, wearing neither shirt, nor shoes. “We’d get used to a different person every time we saw him,” she says. “Rod had a phenomenal memory, and was passionately interested in literature. Sometimes, though, he’d become apathetic and remote. But he was an incredible support to me when I was going through a period of emotional turmoil. He was an extraordinary listener.”
Her memories of him explain her preference for the term, ‘care partner,’ rather than carer. “I often think that we get as much out of the ‘caring’ as the other person,” she says.
In 1986, Rod moved to Byron Bay on the New South Wales North Coast. There, he met Penny Chapman, the woman who became his partner. They were together for 25 years. Rod’s writing - poems, novels, short stories and plays – was prolific. One of his plays, The Beatification of Mary McMullen, was made into a short film. Indeed, a list of his achievements appeared in an obituary written by Geoff Helisma, which was published in the Sydney Morning Herald after Rod’s death, from lung cancer, in 2011. He was 60 years old.
Twenty years earlier, a psychiatrist told Janet it was remarkable that Rod was alive and thriving at 40, because so many of those living with schizophrenia take their own lives. Geoff Helisma provided an explanation for this, perhaps, in the obituary, writing: “His muse, schizophrenia, provided inspiration and insight that enabled him to see and express life in ways others could not.”
Altogether, 16 of Rod’s plays were produced. He was also shortlisted for the Angus and Robertson Bookworld Prize; he won the Jean Stone Poetry Award, the Off the Page Short Play Competition and the Schizophrenia Fellowship of NSW’s annual Poetry Competition five years in a row.
Janet, who stresses that she’s not trying to downplay the horrific nature of schizophrenia - but doesn’t believe, either, in a ‘them’ and ‘us’ mindset, when dealing with people living with mental illnesses - set up a company called One Hand Publishing. In 2012, she published an anthology of Rod’s poetry. She named the anthology, ‘It only takes one hand to write a poem,’ after the title of one that he wrote, about piranhas. The evocative opening lines of another of his poems, ‘ As angels sing, I look for butts, in Pitt St,’ are a constant reminder of why she wanted to publish his work; to remember his richness of spirit, and to think about what it means.
Kevin was nine years old when his mother was diagnosed with schizophrenia. The psychotic episode he has never forgotten, was when the person he loved most in the world suddenly turned into a threatening figure, waving a knife. It had been bewildering in the extreme. “You see your mother as having a carer role. And then that was kind of stripped away,” he says.
Growing up with his two little brothers and their stepfather, Kevin became used to an existence where his mother was sometimes not around because she was in hospital. He says he learnt resilience young, as well as great caring skills, through joining the Onfire Young Carers program for eight to eighteen years old, which is run by the Schizophrenia Fellowship of NSW. Kevin joined the program as soon as he was old enough. His stepfather was a great support, he adds, which helped with the situation – although at school he kept the story about what had happened to his mother, to himself. “I was very optimistic that things would get better, and they did,” he says. “My mother’s last hospital admission was quite a while ago.”
Even so, when he was about 17, there was a period when Kevin was taking care of everyone. His mother, brothers and a stepfather suffering depression. Somehow, he managed to juggle school, homework, housework and shopping as well as dealing with two family members who were struggling mentally. Today, Kevin is the main breadwinner for the family. As a result of his growing interest in mental health, he studied nursing and recently graduated. He is currently working in an acute psychiatric ward at Concord Hospital (West), and is also a volunteer and advocate for the Onfire program, which he highly recommends to all young people who find themselves in his position. Recently, he ran a half marathon to raise money for the Schizophrenia Fellowship.
“People talk about having a good life,” he says. “For me, this is what life is - and it has definitely been a steep learning curve. I would be a completely different person if none of this had happened. These are life lessons I’ve learned, and I think I’m a better person because of it.”
For the past 14 years, Liz Shevlane has been her daughter’s chief carer.
She says it has been a journey of grief, both for herself and her husband, as well as for their 33 year old daughter - and one of not much hope, either, Liz adds frankly. Her description of the devastating impact of a serious mental illness on young people is both eloquent, and stark. “They are just normal kids who have their lives snatched away.”
While the dedicated and hardworking people working in mental health have earned her admiration, Liz remains frustrated by the lack of continuity when it comes to the different agencies dealing with her daughter, who has severe bipolar/schizoaffective disorder, and lives in public housing in Hornsby - although after her latest hospitalization, she is back living with her parents at home on the North Shore.
Sadly, she can be a very difficult young woman to live with. But Liz is concerned that her daughter is not capable right now, of coping on her own. One, constant problem is that she hates taking the meds that keep her out of hospital, but which have also caused her to put on a huge amount of weight. For a mother, watching her daughter’s anguish at how her life has turned out is heartbreaking. One day, in the car, she started hitting the window with all her might while Liz was driving.
The biggest thing about being a carer, is having no peace. The only time Liz and her husband get back the daughter they knew from the past, is when she resumes taking her meds.
“And then it’s good to see her talking and laughing again,” says Liz, who recently became a volunteer with the Carer Network, which advocates for carer involvement in all aspects of mental health, and is an organization started by Partners in Recovery, the national programme established by the Department of Health.
“My aim is just to keep her alive until a better treatment comes along.”
Pamela Bruce is one of the remarkable people who take care of the carers: in this case, the carers looking after the mentally ill. At 75, she has only recently retired after spending almost 15 years working with Carer Assist, the Carer Service of the Schizophrenia Fellowship of NSW, which is part of the New South Wales Family and Carer Mental Health Program.
Pamela devoted herself to this crucial work after her son committed suicide 20 years ago. He was 32 years old, and had endured severe schizophrenia for almost a decade. His first psychotic episode, at just 23, and when he was still living at home, was a huge shock for his parents. “To have a beautiful son diagnosed with one of the most serious mental illnesses was life changing,” says Pamela, who would also discover that caring for someone with schizophrenia could be a frightening experience. “Sometimes you had to do the worst thing you could do as a mother,” she adds, of the terrible experience of having to lock her child out of home. It remains a profoundly affecting memory, although ultimately he was able to live independently from his parents.
Pamela visited her son three or four times a week. She says simply that she loved being with him – and she regards the work that she went on to do, as the legacy he left her. A part of that gift was the people she met. “They are very grounded, resilient people,” she explains. Small joys become important. Superficiality fades. The truly valuable things in life shine through.
“They would come in, devastated, to the education programs for carers that we ran, and leave empowered,” she says. The programs covered every aspect of mental illness, including how to deal with grief – and in particular, disenfranchised grief, which is an experience that carers of mentally ill family members know all too well.
Pamela, who is also a former secretary of the Schizophrenia Fellowship of NSW, tells the story of a boy whose mother had suffered schizophrenia for as long as he could remember. His mother was homeless, and therefore, so was he - because he refused to desert her. From about the age of 17, he had been taking care of his mother on his own, on the streets. At 20, he began attending one of Pamela’s classes. Several of his family members turned up, and accused him of not doing enough to get their mother into assisted housing. He fled – with Pamela running after him. “We sat in a different part of the building where he sobbed in my arms like a baby for ten minutes,” she says. “The whole story about his mother came bursting out of him. Then he dried his eyes, and we went back.”
Ultimately, this boy and his mother were put on a Department of Housing priority list. He is still taking care of his mother. Such extraordinary unselfishness doesn’t surprise Pamela, who says that young carers typically grow up extremely unspoilt - a quality that makes them stand out from many of their peers. For her, watching them, it has been one of those many, important small joys.