20 August 2018

27-year-old stroke survivor who cried out in pain accused of witchcraft

South African stroke survivors are tackling both the lack of adequate rehabilitation services as well as the stigma of living with a disability.

Pam Scharneck has come to her weekly Stroke Aid support group at South Rand hospital to play beer pong. Only instead of beer, the plastic cups are filled with cookies. She has been seated in her wheelchair at the head of the table, a mischievous smile playing across her face as she reaches for the bright yellow balls, bouncing them eagerly across the table towards the arranged cups.

“I am thankful for the stroke aid group,” Pam later shares. “If it wasn't for them I wouldn't have been able to do what I am doing. It has given me a lot of courage.”

Number one cause of disability

Alongside weekly games aimed to promote mobility, the Stroke Aid support group provides moral and social support to survivors overcoming the trauma of one of South Africa’s highly common lifestyle diseases. Ten South Africans suffer a stroke – a sudden interruption of blood supply to the brain – every hour. This is often linked to other lifestyle diseases, such as diabetes, obesity and hypertension that are taking lives across South Africa and the rest of the continent. In South Africa, 45% of adults suffer from high blood pressure. Worldwide, strokes are the number one cause of disability and number three cause of death.

Pam is a 91-year-old survivor of five strokes as well as a heart attack. Her doctors have told her that her hypertension is to blame. What Pam didn’t know two years ago, was that her 63-year-old son Darryl had also developed diabetes. Darryl was one of the patients moved from a Life Esidimeni psychiatric homes into ill-equipped and underfunded NGOs in 2016.

“Oh, I got no words,” says Pam, her voice breaking as she recounts the memory of having her son relocated without her knowledge. “I thought I was getting another stroke again, it was too much for me. Not knowing if he was alive. It was only when he came home the following day, he just sort of went into a kind of a coma and I thought he was dying in the flat.”

Both Pam and Darryl were rushed to South Rand hospital where they were stabilised. They are two of the luckier South Africans who have recovered from the lifestyle diseases sweeping across the country. According to the Heart and Stroke Foundation, 225 South Africans are killed by heart diseases every day.

And yet it is not only the elderly who are impacted.

Desperation for answers

Phumeh Mathonsi is a 27-year-old stroke survivor in Mpumuza Location in rural KwaZulu Natal. When her mother found her lying on the floor, crying out in pain at 2am, they did not know that she had suffered a stroke.

“We used traditional medicines on Friday and Saturday. Then on Sunday afternoon our congregation came to pray for her. And then as a family we decided to take her to the hospital,” says her mother Thulisile, who has since quit her job to support Phumeh after her stroke. Her comment speaks to the family’s desperation for answers.

They would have to wait one year for an MRI scan. In the interim, left alone with their questions, Phumeh began to face ostracisation in the community who suspected her of being the victim of witchcraft.

“When I was able to walk again, I would walk around the community and I would see people whispering, talking about me.” She lost friends and family, entering a depression that is commonly seen among stroke survivors in response to the isolation they face.

Not far from Mpumuza location, traditional healer Sebenzile Ndlovu, is seeing more and more stroke survivors coming to her for assistance. She believes that traditional beliefs can coexist with medical treatment. “Many people are suffering. You go into a taxi, there is a person with a stick. You go into the store, there is a person with a stick. There is a person with a wheelchair. There is a stroke crisis in our community.”

Social ostracisation

Ndlovu uses traditional healing methods, and then she also refers the survivors to the hospital. Strokes, she says, come in different forms – ancestral messages, bewitchment, and lifestyle diseases. Either way, she challenges the ostracisation of stroke survivors. “It is very difficult because they are still people,” she says. “They are still alive.”

Social ostracisation, paired with rural isolation, means accessing adequate care is a daily challenge for stroke survivors who should ideally be getting daily rehabilitation from occupational therapists, physiotherapists and speech therapists.

“If you don’t live in the city or near a hospital and you are a person with a disability there are almost no services for you,” says Kate Sherry, managing director of the NGO CREATE, which campaigns for community based rehabilitation and integration of people with disabilities.

“More than 40% of SA’s population live in rural areas and at the moment, access to rehab in rural areas is slim to none.”

'We have lost our dignity'

In KwaZulu-Natal for example, there are 458 occupational therapists, 940 physiotherapists and 88 speech therapists for a population of 10.3 million people. This is before one considers the hard-to-reach rural spaces that even ambulances struggle to access.

With these challenges in mind, community support for stroke survivors is of utmost urgency. Sadly, recent funding cuts by the National Lottery for the Stroke Aid support groups around the country mean more survivors may be left isolated, unable to celebrate the fact that this condition did not take their lives as it has so many other South Africans.

“The government and the community need more interest in one another,” says Pam, as a nurse gently raises her off her wheelchair. “We have lost our dignity. Do you know that the people who are disabled are just hungry for friendship?” she says, before tightly holding on to her walking stick and slowly making her way down the hospital passageway. – Health-e News.

Image credit: iStock




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