A Mother and Son Fight Schizophrenia in South Africa

HOBENI, SOUTH AFRICA —  This is Part Four of a five-part series on the mentally disabled in South Africa Continue to Parts: 1 / 2 / 3 / 4 / 5
That night haunts Charity Petelo. To her, it’s as if it all happened “just one minute ago,” even though 13 torturous years have since passed.

“On that evening, my life changed forever,” she said.

The widow and her two teenaged sons and older daughter were preparing for bed in their house in Hobeni village in South Africa’s Eastern Cape province. At that stage, it was a night like any other. The dark world outside was alive with sound. Animals cackled, bleated and grunted; insects sang and were joined by people shouting news and good wishes from hill to hill.

Battery-operated transistors receiving poor signals from radio stations hundreds of miles away crackled and fizzed, their mangled messages crawling into minds preparing to collapse after the day’s ordeals.

Hobeni is an isolated, disconnected district where there’s no electricity and no cellphone reception. Most people here are unemployed, alcoholism is rife and good healthcare doesn’t exist.

Charity had settled down to read, to forget this world for a while, when she was jolted by a scream from her 16-year-old son’s bedroom.

“Sisa said to me the people came [into his room]; he doesn’t know [how] because the door was locked. They put him in a coffin. Then they said they’re going to take him away. All these funny things he saw. So I said, no, he was just dreaming. So I said he must sleep with me….”



But Sisa’s strange visions continued in his mother’s bed, keeping them from rest. His eyes widened and his face contorted. “He didn’t look like my son anymore,” his mother recalled.

The boy’s paranoia intensified. Sweat dripped from his body. Then, said Charity, he suddenly stripped his clothes off and demanded to bath.

“He said he was preparing for these people who were coming to take him away. He was washing so quick. Then he put on other clothes and he pulled tight his belt. He said, ‘These people, today they said they’re coming and they don’t care about you, they’re going to take me.…’”

Sisa’s terror soon infected the entire family. All began fearing that some invisible, horrible threat was about to consume them.

“The only way to calm Sisa was for everyone to sit with him to wait for these people to arrive to take him away. We sat in our house the whole night, waiting. Sisa’s whole body was shaking,” said Charity.

At midnight the youngster announced that the people who were coming to fetch him were close. He jumped up, unlocked the front door and ran into the blackness.

Charity said she told Sisa’s brother, “Don’t worry. The gate is very high and it is locked; it will stop him.”

The steel security gate and the perimeter fence were several meters high and topped with razor wire. But Sisa scaled them, without injury, and vanished into the night.

“To this day we don’t know how he got over them without ripping himself to pieces. All I know is that Sisa has amazing power. He can pull a door off its hinges very easily,” said Charity.

The next morning the Hobeni community formed groups and began searching for Sisa.

“They looked everywhere – in the forests, at the sea, everywhere,” said his mother. About 16 hours after his disappearance, a disheveled Sisa was found wandering along a highway. Charity said she asked him, “What happened last night?” to which Sisa replied, ‘Those people I saw [in the visions] fetched me and took me away.’ He told me that, ‘We went to the sea, under the water. It’s where Satan stays.… There were so many people. And Satan was the king of them all!’”

She took her son to hospital, where she said a doctor told her, “‘He’s mentally confused. He has schizophrenia.’ I am a nurse but that was the first time I had heard of such a thing. When the doctor explained to me what schizophrenia is, I said to myself, ‘Your life has now changed forever.’”

Alex Gunther, a highly trained therapist specializing in educating and caring for mentally ill people, now treats Sisa at her donor-funded facility, Ikhaya Loxolo, “Home of Peace,” in Hobeni.

She explained that Sisa behaves like many other people with schizophrenia. “His thoughts are always in chaos and he doesn’t respond emotionally like normal people do. He gets paranoid; he hallucinates; he has delusions. All of this means he’s socially dysfunctional as his behavior is often totally inappropriate.”

‘Zombie’

Following his “night under the sea with Satan,” as his mother refers to it, Sisa became “detached and disinterested,” she said. He stopped feeding himself.

“So Sisa used not to eat. He used to sit and just sit. Once he’s hungry he becomes angry. So you must feed him [immediately]. We were feeding him, physically. He could not [even hold] the spoon,” said Charity.

Sisa stopped communicating with his family, friends and teachers.

“I took him out of school because the children were laughing at him…. They said he’s a zombie,” Charity remembered. “In Xhosa culture it is said there are people who walk among us, but they are actually dead. This is what they said my son is.”

She added, “Sisa no longer cared how he looked. He stopped washing. People started calling him the ‘dirty demon.’ They said he is possessed by demons, he is the ‘child of Satan.’”

Sisa was, and continues to be, shunned in Hobeni -- because of his behavior but also because mental illness is highly stigmatized in the area. As in many isolated parts of South Africa, schizophrenia isn’t recognized as a medical condition in the village. People with it, like other mentally ill people, are considered simply “mad” and “beyond repair.” No special treatment is given to them, largely because there are no facilities to treat them.

“Individuals with schizophrenia, undiagnosed, having never received any medical care, are left to wander the streets, homeless. They are mocked and laughed at. Many die on the street, some commit suicide,” said Gunther, who is convinced that the area of mental health is presently the “greatest void” in South Africa’s healthcare sphere.
Before she found Ikhaya Loxolo, Charity said she had to care for Sisa “around the clock.” She convinced officials at the hospital where she worked to allow her and her son to stay in a small house on the premises.

“So I would leave for work in the morning and give him his tablets. That made him sleep until about lunchtime. Then I go back home to check on him and give him food and more tablets, and so it went on….”

Jailed mind

Clouded by a smoky haze, Sisa [29] sat watching men barbecue on a recent Saturday afternoon at Ikhaya Loxolo. He’s a massive man, almost two meters tall. His arm and leg shook uncontrollably. He never blinked his eyes; they remained wide and staring. His mouth hung open. He whispered to himself constantly.

“His soul is trapped,” said Charity.

“His thoughts are like shredded paper,” said Gunther’s husband, Michael, who helps her run the home.

“Sisa is quite our biggest challenge, in terms of his behavior,” Gunther explained. “He doesn’t voice what is wrong with him or what he needs so it’s like mothering a two year old, where the mother has to puzzle over what’s wrong with an inarticulate infant. Physically he can actually do everything. But because of his mental illness he can’t do anything.”

Usually the therapists must wash and dress Sisa. Often they must lead him to the toilet and help him urinate and defecate. If they don’t he’ll “dirty” himself, said Gunther.

She added that Sisa’s moods change within “split seconds.”

“He can be aggressive now and then the next moment he is laughing to himself like mad! He also gets extremely frustrated, which scares people. The challenge is to know what is frustrating him because he will not tell you,” said Gunther.

Charity said her son, who was once “bright and shining” and surrounded by friends, and a talented singer and guitarist, is now completely anti-social. “If there are two or more people he wants to go and close himself [up] alone, somewhere. He does not want to be with people,” she said.

Violence

A variety of medicines now calm Sisa but he remains prone to aggressive outbursts. The people of Hobeni are “terrified” of him, said community elder and Ikhaya Loxolo cook Mama ka Blondie.

“We [at the home] are not scared of Sisa. But as soon as he leaves this place, everyone in the community is running away from him. They fear him very much,” she emphasized.

Gunther added, “In the beginning all of our volunteers ran away from him. I had to train them hard about him – how to deal with him, how not to be scared of him, how to talk to him nicely like a normal person and all of those things….”

Sisa used to stay permanently at Ikhaya Loxolo but now returns to his mother’s house in the village two weekends a month – for good reason, Gunther said.

“He gets very angry if he wants to be with his mom and he can’t. He becomes dangerous,” she explained. “He became homesick a while back, and he hit a door and broke it. He hit a phone and broke a phone. He went to the kitchen and took a knife, but he just walked up and down with the knife.… On that day I called the mom to say, ‘Come now and pick him up, because the safety of the other residents is not ensured anymore.’”

Gunther is adamant: “Once Sisa hurts another resident – that will be the day he is gone [from Ikhaya Loxolo].”

But the mental health specialist asked, “Where else can Sisa go? There are no mental health facilities here to take care of him. People here think he is possessed by demons. If it wasn’t for us, who knows what would have already happened to him? Who knows what he might have done to another person? We are his only hope.”

Jealousy

Charity is a professional nurse, with western-style training and qualifications. After Sisa was diagnosed with schizophrenia, she studied sociology and psychology at college and psychiatry at university to gain more knowledge about it.

Nevertheless, like most people in Hobeni, she’s convinced her son is “a schizophrenic” because he’s bewitched. “I think there was an evil spirit [involved]…. The attack from the evil forces left him mentally ill,” she told VOA.

Charity said a traditional healer as well as a respected man in the community had told her that Sisa fell victim to a group of witches. “I believe they were acting on behalf of someone, or some people, who were unhappy about his relationship with a certain girl at school,” she explained. “So someone became jealous of these two young people and put a curse on them.”

Charity said the girl died “mysteriously” soon after Sisa became “delusional” when he was 16. She added, “I know Satanism is practiced in the Hobeni area as well. I believe that could also have played a role in what happened to this girl and to Sisa…”

The nurse said nothing she had learned in university textbooks could explain why Sisa was “normal” up until the age of 16 and then, “out of the blue,” a person with schizophrenia.

“I can’t think of anything other than witchcraft that made him this way,” she said.

Childhood trauma

Medical science has yet to establish the cause or causes of schizophrenia, said Chanelle Albertyn of the South African Federation for Mental Health, an organization that offers help to the mentally ill. But she added, “It’s likely to be the end result of a complex interaction between genetic, biochemical, developmental and environmental factors.”

Albertyn pointed to an event in Sisa’s childhood that possibly contributed to his later schizophrenia: the murder of his father when he was 10.

“He [Sisa’s father] was driving the car [in Johannesburg]… They were white people who were shooting him with AK47s. They shot until he died. The car was beyond repairs. It was full of holes... Sisa was so hurt because he was loved by his father,” said Charity.

She said the killing has never been solved, although she speculates her husband was “assassinated” because of a romance with a “certain” woman.

Charity acknowledged that his father’s death had a severe impact on her son. Immediately following the murder, she said Sisa started having problems at school.

“I was called by the teacher. She said, ‘No, Sisa has changed altogether. He beats the children…. He [picks them up] by their hair and beats them – the white children only.…’”

But she emphasized that Sisa’s misbehavior and aggression lasted only a few months before he settled down and became a “normal” boy – until the delusionary episode that plunged him into schizophrenia when he was 16.

‘Getting worse…’
Charity is extremely grateful to Ikhaya Loxolo for caring for Sisa.

“These people here they know how to take care of him; even when he tries to escape they know how to find him and to get him back. They know how to treat him so that he does not become angry and violent so often. Here he feeds himself and he washes his underpants. He is also more social. He knows how to sit with other people and eat. He never used to sit with other people,” she said.

But despite this progress, the mother insisted that Sisa’s schizophrenia seems to be getting worse and Gunther commented, “Every day that we deal with him here, we doubt if we can carry on like this with him. I have told his mom, ‘I can’t promise you anything.’”

She said Sisa continues to hallucinate and have delusions, especially when night falls. “He walks around here outside at night shouting, screaming…keeping everyone awake,” said Gunther.

Charity added, “He fights something that you don’t see. [He] throws the punches to something that you don’t see. Sometimes he would cry as if somebody’s beating him and he falls down as if he has been beaten by somebody. But you don’t see anybody. Then he cries out, Uxholo! Uxholo!” [Forgive me! Forgive me!] It is terrifying to witness.”

A mother’s pain and fear

Charity acknowledged that her son’s schizophrenia has torn her life apart. She whispered, as tears welled in her eyes, “My life – I don’t think you can call it a life….”

She’s frustrated, depressed and filled with a growing hopelessness that she said is rapidly “emptying” her.

“I am not ashamed to say that sometimes I think it would be better if Sisa died. Then he could have peace. When I look at him I think, ‘What kind of a life does this man have?’ He lives in torture. I live in torture. I can’t handle it anymore,” she said, her head dropping to her chest.

She said while other people look forward to weekend breaks and a few weeks holiday every year, she “fears” it.

Charity said when Sisa returns home he unleashes “havoc” on her and her daughter.

“He wants us to do what he wants. We are just like slaves. If Sisa is there, you must keep quiet. You mustn’t talk about something else. You mustn’t talk about somebody who’s not here…. He becomes very angry – as if we are gossiping about him. [Then] he wants to break everything,” she explained.

“If you are cooking and it’s taking time to make the food, Sisa becomes angry. But then when you put the food in front of him he won’t eat until you feed him like he is a baby. It is only here at Ikhaya Loxolo that he feeds himself. That is why I say that I am a slave to Sisa.”

Charity said her son wants to eat constantly.

“Sometimes I must make him six meals a day. He wakes up at five in the morning and I must start cooking. If I don’t feed Sisa he will get angry,” she said. “I must work as a nurse in the week and two weekends a month and then the other two weekends I must take care of Sisa, and every holiday as well. I never get a break. I am so tired I feel like sleeping forever.”

The mother’s despair is palpable.

“We have no friends. No one wants to be around Sisa. Everyone is terrified of him. Even his own brother no longer visits us because his family are so scared of Sisa,” she said.

Charity said Sisa no longer assaults people but that if he doesn’t get his way he flies into a fury. “He will destroy a house. He’s going to take that desk over there and break it to pieces with his bare hands.… If you can go to my house [there’s] not a single door that is alright. All the doors are broken [by Sisa],” she said.

Charity described herself as a prisoner in her own home and said she was “very scared” of her son. “One day he is going to kill me. If he can see maybe an axe there, he can chop me at any time,” she said.

A mother’s love

Yet, despite her terror and the stress of caring for Sisa, and her intense fatigue and despair, Charity maintained she loves him… But it’s clear that a great conflict rages within her.

When asked why she doesn’t abandon Sisa like so many other parents in the Hobeni district who reject their mentally ill children, she sighed deeply and looked at the ground before saying softly, “I don’t know…. He is my son.”

Charity then hesitated before adding, “I must be honest with you – I have tried to hate Sisa but I can’t…. I love Sisa too much.”

But she acknowledged she’s surviving on the memories of Sisa before schizophrenia “possessed” him - and hoping “against all good sense” that he will somehow be healed and will again be the son she once knew.

“He used to be a good boy. He used to make us happy; he used to play guitars for us; he used to love his brothers and sister and everybody,” said Charity. But she added, “The more the years go [by], the more he becomes far from what I was praying and was hoping for.”

She’s worried that when she dies, Sisa will be destitute.

“I am getting old now and I am the only one in the family with a job. I am the only one who can pay to keep him here at Ikhaya Loxolo and I am the only one who is willing to let him stay at my home,” the mother explained.

Back at the home’s barbecue, pork from the slaughtered pig and meat from a heap of chickens are well on the way to being cooked.

Sisa walks past the fire, in circles, head down, arm and leg shaking. He mutters repeatedly, “I am God; I am God.”

Ikhaya Loxolo’s maintenance man and one of the men grilling the meat, Patekile Mofeti, grins. It’s the ironic smile of a man who has seen and heard this many times before.

Charity stares at her son. She doesn’t smile. She, like her son, is imprisoned in a netherworld of suffering from which there’s currently no escape.