Chicago Tribune - November 26, 2006
Laurie Goering, Tribune foreign correspondent based in South Africa

Leo grew up as one of nine children in a remote rural South African village called Qudeni, amid stunning green hills and relentless poverty. Her father, a progressive man, insisted she go to school at a time when few girls there were educated. After graduating from high school, she married a local boy, had two sons and moved to Johannesburg to find work. Now, 20 years later, she and her straying husband were divorced, her boys were nearly grown and she was paying off the mortgage on a modest home.

She had plans. After years spent working in poorly run orphanages, places that pained and infuriated her, she hoped to put away money while working as a nanny to open a refuge for abandoned, mistreated and HIV-positive babies in her home. She would protect the vulnerable, stem the suffering of the country's orphans.

Then her phone began ringing. The calls were from her family, and the story they told was the story of South Africa.

As Leo and I got to know each other--on long car rides, over cups of tea--she told me, little by little, about her family. What she didn't tell me, at first, was about the row of fresh graves at home in Qudeni.

South Africa has one of the world's worst AIDS epidemics, with nearly 20 percent of adults--more than 5 million people--infected with the virus. Each day, 875 South Africans die of AIDS-related complications, according to the United Nations. The impact on families is staggering.

Some spend nearly every weekend at funerals of family, friends and co-workers. Others struggle to care for orphans and the sick. Fledgling government drug-treatment programs, little advertised and often hard to access, are just beginning to make an impact. And in a nation where AIDS is spread largely through heterosexual sex and multiple sexual partners--though sometimes from sufferer to caregiver through contaminated blood and feces--the disease remains such a mark of shame that many people prefer to die rather than seek treatment.

Leo eventually told me that, in the year before I hired her, three of her brothers and sisters had died from the virus, so feared in rural South Africa that almost no one talks about it--not families, not communities, not even the dying.

Vezi, Leo's oldest brother, a strapping high school teacher nine years her senior, was the first to fall ill, not long after the death of his wife. Initially, he told family members he had diabetes. But in his final days, weeping in a hospital bed, he admitted the truth to his sister.

"He said we needed to know he had slept around. He said it as a warning," said Leo, who saw him just before he died. "He told me, 'Tell this to my other brothers. Tell them how painful it is.' "

The advice came too late for Lawrence, a soldier. Six months after Vezi's funeral, Leo got a call that her younger brother had fallen sick and could no longer work. She took Lawrence home, nursed him and tried to accept his vehement insistence that he didn't have AIDS. Three months later, blind, gaunt and crippled with pneumonia, he was dead.

Then it was little sister Thobile. Pregnant with her second child, she began losing weight rather than gaining it. By the time her son was born, both she and her boyfriend were dying. The baby and his older brother went to live with an aging grandmother in Soweto, since Leo's mother, Julianna, already had Vezi's three orphaned children at home.

Leo's siblings weren't the only family members filling graves on a grassy hillside below the family home. Spouses joined them. A young cousin with a baby hanged herself after discovering she was HIV-positive. Another cousin, also sick, swallowed poison.

"We thought this sickness was meant for this family," Leo told me. But by the time she related the story, she was sure the worst was over. She still had five brothers and sisters. They would share the burden of caring for the orphans. They would manage.

Then the calls started again.

One day Leo was sitting in the back yard, laughing with my daughter and new baby son, when I heard her cell phone ring. A short time later she walked into the house, looking unsteady, and asked my husband to make a phone call to Chris Hani Baragwanath Hospital in Soweto.

"Someone just called from the hospital asking if I know anyone by the name of Sabelo Mchunu," she said, shaken. "They say he is dead."

Her younger brother Sabelo had been sick with tuberculosis for more than a year, and he had spent much of the time trying to recuperate at Leo's home. Recently he'd been feeling better and had moved back to his home in Orange Farm, south of Johannesburg. But he'd also started complaining of a hugely swollen gland near his ear. Doctors wanted to operate, but Sabelo had refused. He'd also refused an AIDS test.

"You know men," Leo said. "They never like doctors."

But that morning, as Sabelo crossed a street on the way to work, the gland burst. He fell unconscious to the pavement. Alarmed passersby called an ambulance. Later that day he died at the hospital, and doctors called the death AIDS-related.

Stunned, Leo and I drove silently to the hospital mortuary. As I waited outside with my son asleep in the back seat, she walked past rows of unclaimed bodies piled on the floor, many of them AIDS victims, to identify her brother. When she came back out, we both wept.

Until his death in 2002, shortly before his children began dying, Leo's father, Lucas, was the center of the Mchunu family. Adored by his children and his neighbors, he was a creative man, always on the lookout for good ideas. When local children had trouble walking long distances to the nearest school, he built a pair of classrooms on his own land and turned them over to the government. When neighbors went hungry, he started community gardens to feed them. He settled disputes, found ways to solve problems, inspired people with his caring.

Like her father, Leo can't turn her back on problems. Slowly, as her siblings die and her mother ages, she is taking over his role in the family. When family members fall sick, she takes them into her home. When they die, she digs into her meager savings for a casket, a funeral, a van to transport the body home. She scrapes together shoes and school clothes for all the orphans in Qudeni, not just her nieces and nephews, and badgers local schools into keeping orphans in the classroom even if they can't afford to pay school fees. When she runs out of funds, she borrows from me, and borrows again.

Often, after leaving work Friday evening, she climbs into a crammed taxi-van for the five-hour trip to Qudeni just to check on things before turning up at work again Monday morning. She is exhausted and she is exhilarated. She has things under control.

Then she walks in one day looking stricken. Cyril, one of her last two remaining brothers, is sick. He has four children and his wife is already dead. Cyril won't admit the possibility he has AIDS. But the kids, who have seen their mother die, are terrified. They know what's happening. They just don't know what will happen to them.

"It is a house of tears," Leo says. "They are too scared to ask him anything about it."

She begins taking an hour-and-a-half bus ride to their home after work most days to check on the kids, make sure everyone has food. She asks Cyril what should happen to his children.

"You'll make a plan," he says. "My hope is with you."

Within weeks, Cyril is in bed at a rundown tuberculosis hospital outside Johannesburg. He has given up. Leo and I have not. South Africa's government has begun providing free anti-retroviral drugs to people with AIDS, and Cyril is more than sick enough to qualify. I spend all day calling doctors at a treatment clinic in Soweto and negotiating the paperwork to have Cyril transferred to a nearby hospital.

That night, my husband drives Leo out to see him and talk about the drugs. He is rail thin, lying on a mattress on the floor. Painfully propping himself on an elbow, he raises a hand to shake my husband's. He listens to Leo's pitch for the treatment program.

"You can do whatever you want with me now," he says. But when she tells him she'll see him tomorrow, he says, "I don't know."

The next morning, Leo's phone rings. Cyril is dead.

Again, she borrows money: $120 for the cheapest casket, $300 to transport his body home to Qudeni. She and her remaining brother stick his coffin in the back of a too-short van--the only thing they can afford--and tie the door shut with rope to hold the box in. On the way home, police pull them over and ask for a payment to overlook the gaping back door. Leo, near tears, finally convinces them she has no money.

Cyril's kids already have their bags packed when Leo comes to collect them at Orange Farm. "We're going with you," they say. But Leo has more bad news. She can only keep Katiwe, the youngest, with her in Johannesburg. The two older girls and the little boy will go live in Qudeni with their grandmother, far from their friends and their home. The children dissolve in tears.

Like Leo, my father comes from a big, poor, rural family. He was one of seven children, raised on a shoestring farm in rural Nebraska. Money was so tight that he and his brothers often crept into the fields at night and used a long pole fitted with a net to poach pheasants to eat. The first car they owned they won in a lottery. When my mother threw my father a surprise birthday party, soon after they met, he was deeply moved. He'd never had a birthday cake before.

As Leo's brothers and sisters die, I try to imagine the same thing happening to my aunts and uncles. I envision growing numbers of my 22 cousins showing up at our door, my father and mother up late at night, worrying how to make the money stretch.

What I try not to imagine is my own father and mother gone, my brother and sister and I on someone's doorstep, an aunt telling us, as kindly as she can, that we can no longer be together.

Cyril's death changes Leo. She has had enough of the disease killing her family, killing all the families in Qudeni. She is ready to fight.

She calls a public meeting at a broken-down community hall in the village, the first gathering anyone can remember. Men ride in on horseback through the rolling hills and tie their horses outside the hall. Grandmothers walk for hours along trails leading to town, babies tied to their backs and other grandchildren kicking dust behind. By late morning, more than 200 people are sitting in the hot sun outside the hall, fanning themselves and waiting.

Leo steps up on the porch, introduces herself and tells the story of her family's battle with AIDS.

"We are not going to hide things now," she tells the crowd. "It's about time to say things openly. I don't know whether we will win this war, because I think it's war. But I'm looking for people who will stand up and face the reality. The time for sitting silently has come to an end."

One by one, community members come forward to speak: the great-grandmother with a 7-month-old baby on her back, who has lost all her children and grandchildren to AIDS; the grandmother with 16 orphan grandchildren living on her modest state pension; the stooped old lady who limps to the front leaning on a stick.

"I have seven orphans. Three are babies," she says. "I have one daughter-in-law and one son-in-law and they are sick. I have come here today even though I need to be at home. My grandchildren cannot afford to go to school."

Another man points to a hut on a nearby hill. Four young orphan boys are living there, he says, and they are breaking into the homes of neighbors. Later we discover they have not eaten in three days.

Leo urges the crowd to call on their neighbors, find out what is happening, offer what help they can.

Afterward, Leo and I clamber over some rocks and walk together down a steep cowpath, through waist-high green grass, to her family's cemetery. It's set on a hillside with a view of the mountains, just a short walk below the neat thatched huts where her mother and most of her orphaned nieces and nephews live.

There, inside a makeshift fence of branches wired together to keep the cows out, are long rows of raised earthen graves. Leo points out Sabelo's resting spot, Thobile's, Vezi's, Lawrence's, Cyril's. She struggles to name all the others buried there, to remember who occupies each of the still-fresh mounds. We stand quietly in the late afternoon sunshine for a few minutes, then start the steep climb back.

AIDS is not done with Leo's family. Now Thelma, her younger sister, is sick. In their mother's kitchen in Qudeni, Thelma boils some eggs for dinner, moving slowly and painfully, her pink pants and tunic hanging on her thin frame.

Her three girls, who have already lost their father, are not coping with Thelma's sickness. The eldest has temporarily run away. The youngest are distant, worried.

Leo's mother is struggling too. When Thelma arrives from Johannesburg, obviously ill, her mother moves out of the room they once would have shared. "I don't understand it," Thelma says. "Her reaction is very cold. She is running away from me."

Thelma's mother, dressed in a blue pinafore and headscarf and wincing from chronic back pain, admits she is reaching the end of her strength. "It hurts. It hurts so much," she says, glancing over at Thelma. "Five of my children are gone. It's obvious she is going too."

With so many orphans to feed, and Thelma's girls set to join them, "It's very tough and heavy for me," she says. Her $115 a month old-age pension now must stretch to pay for food, clothes, school fees and bus fares for six orphaned grandchildren, plus Thelma's daughters.

"I used to think I would be a rich granny, surrounded by grandchildren," she says. "Now I'm a mother again. Are they all home from school? Do they have something to eat? Are their uniforms ready?

"I don't have the energy," she says, sighing. "But what can I do?"

Thelma, listens, fretting. "What worries me is I've got only two sisters and a brother left," she says. "They have a heavy burden on their shoulders. Will they be able to care for my children too?" She turns away and wipes the tears from her cheeks.

At Leo's insistence, Thelma agrees to fight. She gets up early and, with her mother, arrives at the nearest hospital at 6 a.m. to seek anti-retroviral treatment for AIDS. She waits. And waits. At 6:30 p.m., she's told the doctor is too busy to see her. She borrows some blankets to sleep in the hospital waiting area that night. The next day she waits again. At 2 p.m., she's told the overburdened doctor is again too busy.

Leo is furious. "This government is saying you must just stay home and die," she says.

Finally, after a month's delay and a switch to a new, more distant hospital, Thelma starts treatment. Soon afterward, as I drive Leo home one day, we rejoice at the change in the family's fortunes. Thelma will live. She'll be around to deliver the mother-daughter talks her girls will one day need to hear, to help her mother with the orphans. She'll be an example for the community, persuade others to seek treatment, still a rarity in most rural areas.

"It's the start," Leo says. We smile, and laugh, and talk of new opportunities, of how proud we are of Thelma.

Then, a few weeks later, the phone rings. Thelma's in the hospital, in diapers, suffering from what looks like jaundice. It appears to be a reaction to the drugs. In three days, she is dead.

Another casket, another funeral, another trip to Qudeni. When Leo leaves afterward to return to Johannesburg, Thelma's daughters follow her along the dirt path to the nearest road, begging her to take them along. But Leo has no money to support them, no more room in her small house. The oldest girl goes to live with a paternal uncle; the youngest two, silent and uncommunicative, stay with their grandmother.

At home in Johannesburg, Leo is worried about 10-year-old Katiwe, Cyril's youngest daughter, now living with her. Separated from her older siblings, Katiwe is depressed and withdrawn and often sick. Leo takes days off work to keep an eye on her, calls in friends, occasionally keeps her teenage sons home from school to baby-sit their cousin. On weekends, Leo takes the little girl back to her old home in Orange Farm to see friends, which lifts her spirits a little. Or Leo and I take her to the Johannesburg zoo, where she and my daughter skip along, hand in hand.

But Leo has other demands on her time as well. Michael and Kwenza, Thobile's boys, spend weekends at her house, sleeping on the floor of the living room. Their grandmother in Soweto is increasingly incapacitated by age, and Michael, just 12, is now forced to do most of the cooking and cleaning. On their visits, little Kwenza clings to Leo, calling her "Mama." Soon, Leo knows, Kwenza and Michael will need to move in permanently.

Little by little, the rooms she had once envisioned as her baby sanctuary are filling up with her own family's orphans.

Understandably, so many deaths in a family breed a kind of paranoia. Leo's remaining brother, Sixtus, begins taking an AIDS test every three months, though he and his wife are faithful to one another. Leo's two teenage sons, who are not yet sexually active but have helped bathe and feed and care for sick relatives, go for AIDS tests as well. Two days after Thelma's funeral, they take along their little cousin Katiwe. Her test comes back positive.

Leo is reaching the end of her strength. "It never stops," she says, exhausted. She takes a day off work to try to get Katiwe started on AIDS treatment drugs. After waiting all day, the state hospital tells her they don't have the medicines the child needs. Leo takes another day off, and another.

A furniture company calls our house, asking why Leo hasn't made payments on a stove she bought. Then a collection agency calls, demanding we garnish her wages.

From Qudeni, neighbors warn that Leo's mother can no longer cope, and is contemplating suicide. She wants Leo to come home to help. But Leo can't afford to quit her job, to lose her house.

Life can spiral quickly out of control. Finding ways to recover is the real test. Leo, somehow, finds them.

She pushes ahead to register the baby orphanage she has long planned. Only now her goal is a broader community project, aimed at stemming AIDS and helping orphans in Qudeni as well. Like her father, she starts community gardens. She begins building a daycare center for 100 young orphans. She plans a youth center for teens, a soup kitchen. She tries to get local officials to start an AIDS treatment clinic in Qudeni.

Katiwe starts on anti-retroviral drugs and begins feeling better. Leo's oldest son, newly graduated from college, gets his first job as a computer programmer and a much-needed paycheck.

Leo finds the courage to take an AIDS test herself. Her ex-husband died of the disease, but her test is negative.

Before, "I was very depressed," Leo admits. "But now I can't stand depression anymore. I just want to do something. I'm trying to turn my feelings into energy."

The phone rings again. Amanda, Leo's last sister, is HIV positive.

This time, Leo doesn't cry much. She is relieved Amanda has been tested. Her sister has caught the virus early. There is a very good chance the drugs will work.

"When I saw it was Amanda on the phone, I was afraid to look at the [text] message," she admits. But after staring a moment at the hard news, she takes a deep breath, hits the call button and waits for Amanda to answer.

---

Why AIDS deaths keep rising in South Africa

In South Africa, an estimated 5.5 million people carry the virus that causes AIDS, or about one in five adults. Nearly 900 people a day die of the disease.

In early 2004, the South African government, under intense pressure from the Treatment Action Campaign, a grass-roots South African lobbying group, agreed to begin providing free anti-retroviral AIDS drugs to the sickest South Africans. Today, 175,000 South Africans with AIDS receive the life-saving government treatment; another 100,000 pay for such drugs through private doctors. South Africa's government calls its treatment program the "biggest and most comprehensive" in the world.

But international critics, and most South Africans, say the effort falls far short of what is needed. Other African governments, including those in Botswana, Namibia and Uganda, treat at least 50 percent of those in their countries needing AIDS drugs. In South Africa, the figure is around 20 percent, one reason the AIDS death toll continues to rise. Since 1997, new government statistics show, the death rate for women in their 20s and 30s has tripled, largely because of AIDS.

Many clinics that offer the drugs are overburdened, with patients waiting days or weeks until they can see a doctor. In many rural parts of South Africa, the nearest clinic offering the drugs is an hour or more away by car, a difficult and expensive trip for the very sick.

Most troubling, however, is that the government treatment program is neither promoted nor advertised The country's controversial minister of health continues to insist that a diet of lemon juice, garlic and beets is more effective for treating AIDS than anti-retroviral drugs. The president, who has questioned whether infection with HIV leads to AIDS and insisted he knows no one with the disease, rarely speaks on the subject.

Across South Africa there are no billboards promoting the treatment program, no ads on television or in newspapers. Many of the country's least-educated people, particularly in rural areas, do not even know the program exists.

At a recent international AIDS conference in Toronto, Stephen Lewis, the UN envoy on AIDS in Africa, called the government "negligent" in its efforts to treat the disease, particularly considering South Africa's position as one of the continent's richest nations.

Stung, South Africa in recent weeks has handed control of the country's AIDS policy to its deputy president, who has begun meeting with AIDS activists once frozen out of policy making. The government says it will step up delivery of AIDS drugs at more clinics, a move that offers new hope to millions of affected South Africans.

--L.G.
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