Where traditional beliefs are more real than textbooks, treating mental illness is a balancing act for sangomas and medical doctors alike.
It was a warm summer evening, just two weeks before Christmas in 2001, when Charity Petelo’s 16-year-old son, Sisa, began stripping off his clothes. He rushed to the bathroom, opened a tap, grabbed the green bar of Sunlight soap and a facecloth and frantically scrubbed his naked body, wide-eyed, breathing heavily.
Charity remembers his dark-brown skin gleaming in the light from the fading sunset. The mother was terrified, as she watched water pool at her son’s feet.
“What is the matter with him. Why is he behaving like this?” she thought. Sisa did not respond to anything she said.
Charity heard a dog’s howls floating across the undulating hills that surround the isolated Eastern Cape village of Hobeni, a few hours south of Mthatha. “I thought at the time, ‘That dog knows something and wants to warn us’,” she said. “My fear got very deep…”
Sisa started to dress – in clothes better suited to the area’s freezing winters: a long-sleeved shirt, black jeans and a heavy camouflage jacket. He put a belt on and pulled it so tight his mother wondered how he would be able to breathe.
“They are coming”
Again, she tried to speak with her son, to calm him, but he could not – or would not – listen. The breathless boy simply repeated, constantly: “The people told me they are coming to take me away tonight, and they don’t care about you. They are going to take me, no matter what. There is nothing we can do. They are coming, all of them. ”
Sisa’s brother, Chido, locked the front door. This, said Charity, prompted Sisa to smile “strangely” and whisper: “Nothing will stop them.”
Panic infected the Petelo family. “We all started to believe Sisa, that something terrible was coming for us all,” Charity recalled. “All we could do to was to sit with him and to wait for these people to come.”
Sisa sat stiff and upright, a hand on each leg, on a chair in the middle of the lounge. His unblinking eyes were fixed on the front door. Charity told him: “It’s okay, Sisa; you’re safe … ”
She tried to hold him, to comfort him – but he pulled away, screaming: “Don’t touch me! I am not Sisa any longer. Sisa is already outside!”
“They are close”
At a few minutes to midnight, Sisa sprang up, stood dead still and announced: “They are close.” He sprinted to the locked door and with “incredible strength,” said Charity, forced it open and rushed into the darkness, somehow managing to clear a two-metre fence topped with razor wire. Sisa was gone.
Charity and Chido immediately began a search of the village. A woman told them Sisa had knocked at her door shortly after midnight. “This woman told us she was too scared to open her door because she heard many different voices outside and did not know what was going on. But she said she was sure that it was Sisa talking as well,” said Charity.
Almost 12 hours after his disappearance, some villagers found an exhausted and confused Sisa about 30km from his home, kneeling at the side of the N2 highway.
Charity asked him: “Where have you been?” A disorientated, sweating Sisa replied: “We went under the water, under the sea. There were so many people there. And Satan was the king of them all!”
The mother rushed her son to a local hospital, where a doctor diagnosed him with schizophrenia.
“It was the first time that I had heard of such a thing,” said Charity. “But I just knew in my heart it was very bad and I said to myself: ‘Now your life has changed forever.’ And Sisa was never normal again … My son, as I had known him, was gone.”
Zwelisithile Bendlela chews pensively on a twig. The sangoma sits on an upturned paint bucket on a hill overlooking a home for mentally disabled people in Hobeni.
Slowly and quietly he says: “There are witches here. They get paid by jealous people to send evil spirits to possess their enemies so that they become mentally broken. I see it happening every day.”
Bendlela is in his early 30s. He has thick eyebrows and an apricot-coloured towel draped around his head, like a turban. He stares into a valley with turquoise mud huts with thatched roofs.
He continues: “Those people take revenge on you by cursing your loved one so that from then on the beloved person of yours is nothing but a burden to you.”
This is Xhosa heartland, where culture, which includes a strong belief in witchcraft, is everything.
The sangoma hesitates and considers the vast, sparsely populated landscape in front of him. “It’s easy to identify someone who is not right in the head because of an evil spirit. You will speak to them and they will answer you with something that is just nonsense. They also see visions you cannot see.”
Bendlela removes the stick from his mouth, breaks it, and throws it to the ground. He walks to the Ikhaya Loxolo home, which is nothing more than a compound of six mud huts.
On the way, he mutters: “Let me tell you that witchcraft is alive and well in this village. You better be careful who you make enemies with.”
“Home of Peace”
In 2012, Sisa was a resident at Ikhaya Loxolo, or “Home of Peace”. It is privately run and severely underfunded. But for parents like Charity Petelo, it is their only hope of any care for their mentally ill and disabled children.
No government facility to provide such help exists in the area.
But at the end of 2012 Charity had to remove Sisa from Ikhaya Loxolo. Because of his erratic behaviour, the other parents feared for their children’s safety.
From the outset, Sisa was an immense challenge to the staff at Ikhaya. The home’s director, Alex Gunther, explains: “He was mentally ill; the others were mentally disabled. The mentally disabled people mostly have low IQs and learn slowly. Otherwise they’re fine. But Sisa was utterly unpredictable. His moods changed in split seconds and he got easily frustrated and he made people very, very scared.”
Sisa is a big man; almost two metres tall. He often roamed the home’s grounds at night, paranoia streaming from his mouth in violent screams directed at unseen forces.
“One day he got angry and hit and broke a [cell] phone,” says Gunther, who is a therapist specialising in mental disabilities. “He then went to the kitchen, fetched a knife and walked up and down with it. He was whispering things to himself, and glaring wildly at everyone. On that day I called his mom and said: ‘Come and pick him up now because the safety of the other residents is no longer ensured.’?”
“They wanted Sisa out”
After spending some time at home in Hobeni, Sisa returned to Ikhaya Loxolo. But the parents of the other residents immediately voiced their concerns.
“They wanted Sisa out. They believed Sisa was dangerous and bewitched,” says Gunther.
Charity adds: “It is difficult for me to say, but I cannot say I blame them.”
When Sisa was diagnosed with schizophrenia 13 years ago, his mother enrolled for a postgraduate diploma in psychiatry at the University of KwaZulu-Natal. Charity was a highly experienced professional nurse.
“I needed to know more about my son’s condition. I also needed to know if he was bewitched. I needed to know if medical textbooks could explain schizophrenia, or was it [the explanation] rooted in my culture.”
But, years later, Charity is still searching for the answers. “I learned that the condition starts mostly later in life — in young adults, like Sisa, and that such people hear voices and hallucinate. But I also discovered that no one has ever found the cause of schizophrenia. That it is still a huge mystery to medical scientists.”
Charity is 63. Today she is wearing a huge Afro wig and has thick, black-framed glasses. Inside Sisa’s bedroom she removes a magazine from a tall pile of publications, while her son sits alongside her on his bed.
“Reading calms him down,” she says. “This is a women’s magazine. Sisa loves women’s magazines.” Charity glances at her son, who’s staring wide-eyed at a photograph of a woman in a lipstick advert.
“I do know that Sisa was okay at birth,” she says, caressing his arm with a fingertip. “But in our culture it is said that there are people who are dead, but they are not really dead. They are zombies. That is what they call Sisa here – a zombie. You hear it even in church.”
Intense weariness and sadness pervade her voice. “There is something here called Satanism that is practised by some of these witches here. We learned about this in church. I believe everything that is said ?in church. I believe this Satanism has
a lot to do with the schizophrenia of my Sisa.”
Charity, despite her Western education, is convinced “Satanic witches”, on the payroll of “jealous people”, are responsible for her son’s mental illness.
“Sisa was very clever at school, especially at English. I am telling you, people who were jealous of him targeted him, using the witches to damage him forever. He also had a lovely female friend at school and many people were jealous of their relationship. They cursed him because of all of this.”
In a bizarre twist of events, on the morning that Sisa disappeared, his female school friend’s father knocked on Charity’s door.
“My daughter died this morning,” he said. “The pastor says it was from an evil spirit; he couldn’t save her. Just before she died, she told me witches had sent her soul to the forest where Satan is king.”
Then Charity grimaces, and sighs: “There must have been an evil spirit involved. It didn’t work well with Sisa. It wanted to kill him. But it failed. I suppose if I am honest, it killed Sisa’s mind, but not his body.”
Gunther moved to Hobeni from Germany seven years ago, with her artisan husband, Michael, who is responsible for maintaining the home’s buildings, machinery and farm.
“You know, when we first got here we used to scoff at the people and their superstitions, and tell them: ‘Your beliefs are wrong, just crazy!’?But then one day Michael and I both agreed that many people believe that Jesus rose from the dead and ascended into heaven, and how is that so much more believable than the belief that there are people living under the sea? Or that witches curse people?
“So now Michael and I tell the people here when they tell us of evil snake spirits and such things: ‘Well, maybe what you are saying is true. Maybe you know more and we know less. If it’s true for you, it’s true.’?”
Trauma as a trigger
Medical experts have suggested trauma as a possible trigger for schizophrenia. When Sisa was 10, his father was killed in an unsolved, brutal shooting in Johannesburg.
The murder sparked intense, although temporary, behavioural problems for the boy.
“If I look back, that was when the big problems started with Sisa,” Charity recalls. “From then on, he has never been the Sisa I knew … I was called by the school teacher. She said: ‘Sisa has changed altogether. He beats the children like this …’?”
She mimics picking someone up by their hair and punching them in the face. “Sisa was so hurt because he was so loved by his father,” says Charity.
But then Sisa “calmed down” for a few years – until the episode of bizarre hallucinations when he was 16. “From then on he would throw punches at things we couldn’t see. Sometimes he would cry as if somebody’s beating him and he falls down. But you don’t see anybody,” says his mother.
“It fills you with terror when you see this because you can’t explain it. The boy is so convinced that demons are attacking him and he cries out ‘Uxolo! Uxolo!’ [Forgive me! Forgive me!]”
According to Stellenbosch University psychiatrist Bonga Chiliza, such behaviour is typical of schizophrenic patients. “Stressful life events can unlock schizophrenia if you’re born with a vulnerability to the illness.
“If something really bad happens to you as a child, a severely traumatic event, then you may later, when you’re a young adult, develop schizophrenia.”
Chiliza says, although no one knows for certain what causes schizophrenia, “changes or deletions” in “multiple different genes” characterise the condition. “The first time someone presents with the illness is usually around their late teenage years or early adulthood, even though the person was born with the vulnerability to it.”
A “hallmark” of schizophrenia, says Chiliza, “is hearing voices that are not there and because of that you start believing people are out to get you. Something happens in such people’s brains around the dopamine system, or ‘pleasure centre’. The dopamine system is aroused, resulting in patients becoming hypervigilant or paranoid.”
But Charity remains unconvinced by such medical explanations. She removes her spectacles and wipes small drops of perspiration from her face with a tissue.
“There are so many unanswered questions that have left me wondering if medical science is capable of explaining this condition. For instance, when we found Sisa along the road, he had no injuries. How is that possible if he jumped over a very high barbed wire fence?
“Why did the woman on whose door he knocked hear all those voices that made her too scared to open? Who were those people that she heard? And what about his female friend who died? She, too, saw Satan.”
Chiliza says schizophrenia is mostly hereditary. But Charity knows of no one else in her family who’s ever had the condition.
The most common treatment is antipsychotic medication.
Chiliza explains: “It blocks the dopamine in the brain and dampens the ‘voices’ and hallucinations. When that happens, such patients become more functional.”
Charity says Sisa has been on such medication since his diagnosis at the age of 16. But he still experiences episodes during which he becomes “extremely frustrated and often violent”, appearing to hallucinate.
Domain of the traditional healer
Traditional healer Zwelisithile Bendlela believes the reason for this is obvious. “Doctors cannot treat the causes of mental sickness; they can only stabilise it. Only traditional healers can fight evil spirits – the real cause of schizophrenia.”
Even some medical practitioners in South Africa subscribe to such beliefs. Charity says a doctor at the Nelson Mandela Academic Hospital in Mthatha told her medicine was “quite useless” to treat Sisa.
“He told me: ‘It’s the evil spirit that harmed the boy.’ He gave me a big pile of religious books to read.”
Chiliza says most of his patients consult traditional healers before approaching him for help.
“They first try the traditional healer treatment and when it doesn’t work, they come to us. Unfortunately, the traditional aspect often delays their coming to us by months.
“As psychiatrists we have to try and play a balancing act [between Western medicine and cultural beliefs]. I tell patients: ‘As long as you take my medication, you can go to the sangoma as well.’ At the end of the day it’s their child. If you don’t entertain the possibility that other things could have caused the illness, they will not come back and see you.”
Charity Petelo slouches on a chair in a hut at Ikhaya Loxolo. She fights back tears. “I must be strong. Always. There’s no one else who is going to be strong,” she mumbles, choking up.
Her desperation and frustration are tangible. Her body shakes, with a mixture of anger, grief and bitterness. “I am not ashamed to say that I sometimes think it would be better if Sisa died. Then he could have peace. When I look at him I think: ‘What kind of life does this man have? He lives in torture.’ I live in torture because of his schizophrenia.”
Charity’s entire house is “bolted down”, cloaked with a ring of steel. Thick burglar bars cover all the windows and there are security gates in all the doorways. “Without all of this Sisa will break all the windows and doors, as he has done before,” says his mother.
“We’re just like Sisa’s slaves! If Sisa is here, you must keep quiet! You mustn’t talk, especially not about somebody who isn’t there. He becomes very furious and thinks you’re gossiping about him. Then he wants to break everything!”
Charity says the “only thing” that pacifies Sisa is food – heaps of it, which he wolfs down “so fast he does not even taste it”. She says Sisa eats “at least” six “huge” meals every day. She spends her life cooking, despite being a full-time nurse at a nearby clinic.
“When Sisa wakes up at 5am, there must be a meal ready or he’ll get very angry,” she sighs. “I have tried to get people to help me, but that’s impossible. I must have been through 10 carers in the past few months. They all leave, because caring for Sisa is so difficult. And they are terrified of him.”
“My life, I don’t think you can call it a life”
Sisa turns 30 this year. Except for his year at Ikhaya Loxolo, Charity has been taking care of him singlehandedly since his diagnosis at 16. At times, she’s had to take him along to work, give him medication, and pray that he’d stay asleep until lunch time, when she could go and check on him.
Charity reaches for a handkerchief and says: “My life, I don’t think you can call it a life.
“I need this psychiatry to help myself now. I am going mad myself because of Sisa. But when you go to the hospital the doctor asks you: ‘How is Sisa?’ You, as the parent, you are never asked about how you feel, and if you need any help. Never! No one cares about what the parents of these mentally ill children are going through.”
The inner conflict that characterises her life brims to the surface. “I have tried my best to hate Sisa. But I cannot. I love Sisa. My God. He is my son! I remember the little joyful boy who everyone here in this village loved, the boy who used to play guitar for his brothers …”
Tears streak her cheeks.
“I am getting old now. If I die, what will happen to Sisa?” she asks. “His brother is the only one who is willing to even try to handle him. But that man’s wife is very scared of Sisa. She has already said there is no way ever that she will allow Sisa to stay with her family. How can I hold that against her?”
On a mound of dust in the middle of the Ikhaya Loxolo compound, Sisa watches men break wood to make kindling to start a fire.
He walks a circle of paranoid confusion, head bowed, wide, unblinking eyes staring at the ground, mumbling repeatedly: “I am God. I am God.” His hands shake. His mouth hangs open. He drools.
It is this type of behaviour, and the fact that Sisa is often loath to wash, that has prompted villagers to name him the “dirty demon” and “zombie”.
“Of course this makes me very sad,” says Charity. “Because Sisa actually means ‘Grace of God’.” She pauses, then bluntly stares ahead of her. “But where God is in all of this, I do not know …”
Mia Malan is the founder and editor-in-chief of Bhekisisa. She has worked in newsrooms in Johannesburg, Nairobi and Washington, DC, winning more than 30 awards for her radio, print and television work.