The unmistakable theme song of the classic television series, Hawaii Five-O, fills a sparsely furnished home on the outskirts of Krugersdorp, a town in South Africa’s Gauteng province. Outside, massive grey and pale-brown mine dumps loom large over the low-cost housing settlement of Kagiso. The ultramarine sky above is clouded with orange dust.
Gazing at her scratched television screen, Evelyn Itumeleng rages through clenched teeth: “I don’t like to use the word ‘hate’ but I hate this program. Can’t they show something else? Every day it’s Hawaii Five-O, Hawaii Five-O!”
Her skin is stretched taut over her 54-year-old face. She’s emaciated, and blinks slowly as she talks. A purple satin tracksuit striped with white hangs loosely over her thin frame.
“About two years ago, I sat up in the morning,” she remembers. “I felt dizzy. Then I fell. My legs locked up.” Her son carried her to a local public hospital where she remained for “many weeks” … without diagnosis or treatment.
“That hospital did not have medicine. It did not have proper equipment. The theater was not operating,” says Itumeleng.
Eventually, doctors in Johannesburg diagnosed her with multi-drug resistant tuberculosis (MDR-TB) in her spine. This tuberculosis is extremely difficult and expensive to treat. Many South Africans don’t survive it.
Itumeleng’s legs never unlocked. She’s now paralyzed, and confined to a wheelchair. “Everything happens for a reason,” she says, before coughing hoarsely.
Only a few months to live
Itumeleng is also infected with HIV.
South Africa is suffering a duel epidemic of infectious and non-communicable diseases. Every year, hundreds of thousands of citizens die from highly infectious diseases such as HIV, tuberculosis, and non-communicable illnesses like cancer.
As a developing country facing health challenges on multiple fronts, South Africa has one of the highest disease burdens in the world. According to the South African government, HIV-related illness is the third most common cause of death in the country. Tens of thousands perish from it every year.
Itumeleng is taking medication for her conditions. But, because she embarked on both HIV and TB treatment at a very late stage, doctors have told her she has only months left to live.
She says being confined to a wheelchair is “torture” because she used to be an active person. Tears stream down Itumeleng’s sunken cheeks. “I didn’t think that one day, I could be like this. I was working. I was doing everything for myself. I was looking after my kids, I was looking after this house for such a long time; I was the one who is a breadwinner…”
She shares her tiny grey concrete house with her four adult children -- also unemployed -- and three grandchildren. All eight of them survive on her meagre state disability grant and child grants.
Itumeleng fingers a tattered notebook. Its yellowing pages hold faded photographs of her as a young woman, smiling as she paints a vase. In another, she’s beaming, holding a baby. “In this book is all the days of my life, everything that happened to me, written down, and in photos, for my grandkids and kids to remember me when I am no more,” she mumbles.
Suddenly, Itumeleng seethes and wheezes: “I’ll never give up! I have got that hope: One day, things will come right. Anything’s possible.”
HIV-related deaths continue
On the opposite side of Krugersdorp, dusty liquor bottles and empty plastic packets line stony pathways snaking into Munsieville township.
Snowy Nkoana’s high heels crunch on the gravel. The veteran nurse walks past a few women washing clothes. Some of the women are infected with HIV.
South Africa has the largest public-sector anti-retroviral program in the world. The state gives the life-prolonging ARV treatment to 2.7 million people. South Africa’s National Aids Council says more than half of HIV-infected citizens who should be on treatment don’t receive it.
One reason for the high numbers is that many haven’t been tested for HIV and don’t even know they have the virus. Another is the huge number of people who need medication.
Nkoana says she continues to see many patients who don’t follow the strict guidelines of HIV treatment. She says when infected people default on their treatment, “hell breaks loose. They start becoming ill; they even die, because of being non-compliant. In this era, we shouldn’t be having too many HIV/AIDS deaths; we shouldn’t be. But we are.”
Various national and international medical studies estimate that more than 250,000 South Africans died of AIDS-related sicknesses in 2013.
Nkoana says public health facilities often run out of ARV stocks, contributing to ongoing HIV-related deaths.
As a palliative care nurse who specializes in caring for the terminally ill, she says South Africa is failing to end the stigma that surrounds HIV. “I come across people all the time who do not take ARVs because they don’t want to be exposed as having HIV. They’d rather die than be humiliated in public,” she says.
Pain of cancer
About 30 kilometers away, in Diepkloof, Soweto, a creaking metal gate heralds the entrance of three nurses to the home of Abraham Motlabane. He’s 73 years old and has throat cancer. A white pipe tube sticks out below his chin. It’s a medical device that helps him to breathe and talk, with great effort, through a hole in his throat.
Motlabane rasps that if it wasn’t for morphine, he’d be in a lot of pain. He feeds himself using a syringe that pumps porridge through an opening in his wrinkled stomach. He sighs: “I know that soon I will be gone from this earth. I can feel the cancer spreading through my body. But I’m happy because I have people who care for me.”
In Krugersdorp, doctors gave colon cancer patient Jack Kieser six months to live. That was a year ago. As the former footballer puts it, he’s still kicking … Although his suffering is “immense” at times.
“Sometimes the pain is so bad that you want to commit suicide … You just want to disappear … (But) never mind the pain, you still want to live,” he says, a quiet laugh escaping his dry, chapped lips. He says there are “much worse” ways to die than from cancer.
Kieser’s proud that he still manages an electronics repair shop, and still walks everywhere. “I must. Nobody else is going to do it for me,” he declares. “As long as I can still walk, I walk … I can’t see myself sitting in a wheelchair all day, impossible. Not me, not me. I’ll die still working!”
‘I want to be that first Evelyn…’
Back in her lounge in Kagiso, Evelyn Itumeleng watches more television, repeating her hatred for being in a wheelchair.
She whispers: “I want to be Evelyn again. That first Evelyn…” Her head is bowed and she defiantly wipes tears from her eyes. “I pray every day, if ever I can stand up; I can get out of this chair, only,” she says. A tone heavy with desperation infuses her words.
But she still imagines better times. “Aaaiiiiih! I can go back to work again, help my kids. And first of all I can kneel down with these knees of mine and say thanks to God…”
For many of South Africa’s terminally ill, all they have left is prayer … That, says Itumeleng, and the seemingly endless repeats of decades-old episodes of Hawaii Five-O on national television.