Beryl Allen had a son who was schizophrenic. He killed himself two years ago on July 3. He was 30. She knows what the parents and close friends go through when facing the challenge of mental illness and admits it is “the most tragic and the most fascinating illness because they don’t know exactly what causes it.” It’s a word no one wants to hear they are. Schizophrenic. Even the sound of the word is unsettling. Schizo-phrenic. Conjuring up images of mania and confusion. It affects a person’s ability to differentiate between the real and the imagined. But this is not the only reality known to this misunderstood mental illness. Beryl works as a facilitator with the Schizophrenia and Bipolar Disorders Alliance (SABDA), a mental health initiative that is making a positive difference. They run a support group twice a week at Tara Hospital in Sandhurst, Johannesburg, for outpatients suffering from mental illnesses. It’s a safe place where patients can interact and get creative by making arts and crafts. They make cards, decoupage, paint and play sport at the sessions. Heading up the SABDA support group for eight years now, Beryl says it has a huge impact on everyone involved. “We do crafts here at the support group and we find this helps in keeping the outpatients occupied and being part of something productive and creative…It is very rewarding. You see people develop and they are lovely people and that’s what keeps me here and doing these support groups.” Loneliness. Rejection and isolation. These are the dangers. “There is hope. In the beginning it is such a shock (discovering your child is ill). You think it is the end of the world, but there is a lot of hope. The life of the young person is going a different way but often they get more out of life, different but more fulfilment.” She loves being there for others who are suffering and trying to make their lives better. “Looking back, the sort of people I have met are wonderful and I am grateful for this opportunity to be there for support.” “We get parents in the beginning who are shocked and horrified especially if their child was an over achiever and highly intelligent and when it does happen the parents can’t accept it.” Society needs to be more accepting of mental illness but there is more honesty in the way schizophrenia is portrayed in mainstream media today. In the past there was no distinction between psychopaths and people with psychiatric disorders. People are more prepared to stand up and admit they have a mental illness. Beryl says: “It is difficult getting patients back into the workplace so we need enough understanding people and get people to hire people with mental illness. We need businesses that are kind enough to hire people on a pro bono basis for two weeks – it’s enough time to test abilities and it does not set them up for failure.” Sometimes it works and sometimes it doesn’t.
SABDA also have two community-based houses in Blairgowrie, Johannesburg, where people affected by mental illness can call home. It’s a place where fellow sufferers live together under the guidance of a carer, a house mother.
Shelia Lahoud has been a house mother in one of the houses for 11 years. She says it is challenging but you need to be firm. “You need to be patient and try to understand their condition and keep them calm and cool.”“The perception in the old days was one of violence but that is changing and now people are starting to realise that schizophrenia does not mean you are an axe murderer or doomed to a life of hospitalisation.”A split mindOriginating from the Greek word, ‘schizo’ meaning ‘to split’ and ‘phren’ meaning ‘the mind’, it is a split mind and not a split personality like was once thought. When schizophrenics become overwhelmed they have a break with reality and go into their own delusional world. Hallucinations and hearing voices and lack of emotion and false beliefs are some of the symptoms. It is the way their brain is wired.E. Fuller Torry in ‘Surviving Schizophrenia’ says “sensations are initially enhanced and then later blunted. Like a curtain closing in on the mind. There is an inability to sort, interpret and respond to thoughts and stimuli.”Life after disorderThe outpatients range in age from 22 – 65 men and women. One of the patients, Jane*, 27, was diagnosed withschizotypal personality disorder(previously known as borderline schizophrenia) in her early twenties. A subtype of schizophrenia, it is a personality disorder where individuals are unstable in their behaviour, relationships and moods.“It’s like having a bad day that lasts forever. You get stuck in a motion,” she says.Jane remembers her bad place and how she would dwell in her own thoughts, trying to kill herself mentally and kill the spirit inside, like she was consumed by a “rage of anger.”In Jane’s case the illness was awakened by her experimental drug use. Drug use is a common trigger in predisposed people. Stressful situations are another big activator.After a long and emotional battle with herself, running away from home at 19, getting jobs, losing jobs, being misdiagnosed and taken to various hospitals, she was diagnosed by Riverfield Lodge with borderline schizophrenia. “It was a shock to the system. When I heard it, it was like the worst thing that has happened to me, hearing you have schizophrenia. I had to recover mostly from hearing those words.”Five years of horse therapy at Healing Wings helped her recover.
“You can lead a normal life – you just have to live within the boundaries. Be positive, confident, know yourself, know your illness, know your boundaries and what you can and cannot do. You have to know your limitations. It’s taken me 9 years to cope…I knew I was sick but hearing it is hard. The shame your family go through.”To hear someone living with a mental illness say there is hope and help out there is proof that one can manage the illness: “The doctors are not out to get you. Don’t rebel because it will make you worse. I’m not fully recovered, I have to always take my medication. But I’m coping. Being able to work, getting my learners and hopefully getting a flat soon.”New linksA recent survey suggests that there is a link between psychotic disorders and childhood trauma. This research is also taking life experiences (environmental) into account when treating psychotic disorders, and not only the biological and genetic factors.Psychologist Marilyn Davis Shulman says that the new research showing the connection between early attachment trauma and psychotic disorders is something that also needs to be taken into account when treating patients. “When the patient is having an acute episode you need to medicate. But we also need to make room for trauma counselling because of the link.”“They can function but the reality is we don’t know when they will have a psychotic episode.”Up until 15 years ago people diagnosed with schizophrenia faced a lonely life of heavy medication and hospitalisation. But now, with advancements in medicine and a better understanding of this illness, schizophrenics can live a relatively ‘normal’ life and function in society. With a combination of the right doses of antipsychotic medication, rehabilitation and support, there is hope.There is little sympathy with little understanding. Mental illness is a form of madness and this is frightening. But when you start to understand the disorder, the face of this madness changes from one of terror to one of sadness.
– By Tanja Bencun, feature writer
