The Gogos

The grandmothers.
Without them, there would be hundreds and hundreds of children living and dying on their own.
The grandmothers.
They are the safety net for AIDS orphans. Here in the rural Eastern Cape of South Africa, the lack of infrastructure means there are no orphanages to come to when their parents die. The special homes they go to are the rondavels or huts of grandmothers, sparsely furnished, usually without electricity or running water. The grandmothers, who have done their birthing and raising and scraping together enough food and school fees for their own children, are now grieving the loss of those adult children. And having to start over with raising their grandchildren left behind from the scourge of AIDS.
But now these grandmothers are old, tired. Some are uneducated; some are haunted by the stigma of AIDS. Some do not even know about AIDS, yet their grandchildren have it.
It is impossible to know how many children in the Eastern Cape have lost their parents to AIDS and are living with their grandmother or aunt. It seems the norm here, rather than the exception.
For years, Eunice Mangwane, an AIDS counselor at Umtha Welanga, has felt the need to reach out to other grandmothers. She is one herself, who has a daughter and a grandson with AIDS. As an AIDS counselor, she assumed AIDS would never affect her family. But when it did, she crumbled. She turned to Nokwanda, another grandmother at Umtha Welanga whose daughter and grandchildren have been affected by AIDS. They bonded. And her life as an AIDS counselor suddenly got more intense and more effective. “When it’s not in your family, you don’t speak the same language,” Eunice said. Now she speaks the same language as her clients.
Here in Hamburg in early August, Eunice and Nokwanda hosted the first meeting of the Gogo support group. Gogo is the Xhosa word for grandmother. About 15 grandmothers showed up with their grandchildren to unite, to support each other, to share their stories, each as tragic as the next one.
Joyce Williams stands up at the meeting to share her story. She speaks in perfect English. She is warmly dressed, with two little children, 4 and 2, at her feet. She proclaims in a strong voice – like a preacher -- that God is with all the grandmothers there. He will show them through. Then she tells her story. Her son was married and had two children but then his wife fell ill and died and then her son died too. Now she is left with the two children– one of whom is HIV+. If her story of losing her son were not tragic enough, she explained that just that morning her daughter had passed away from bone cancer. “I came here because Eunice had invited me and I feel it is very important to be here.” The room fell into a stunned silence, even the children at the Gogos’ feet were quiet with their coloring.
Susan Paliso, probably the oldest grandmother there, then stood and shared her story. Her three oldest married and moved from the rural area to work and raise children in the bigger cities. Her youngest son Dumile commuted to the big city to work and back home to share his income with his mother. He was her breadwinner after her husband died. But then he stopped coming home. For five years. He was too ashamed to admit to his mother he had a girlfriend and they had a baby. And then he was sick and so was the girlfriend, whom Susan never met. Finally someone called and said “You must come. Dumile is ill.” Susan did not go. Dr. Carol Baker went and brought him home, but he died very shortly after that. Then the girlfriend’s parents called and said she had passed away and can you take the baby? So Susan did. By this time, she was working as a domestic helper for Dr. Baker and so the child got medical attention – He has AIDS.
Now Susan is 85 years old. Her grandson is 11. He receives a child disability grant from the government but that will end when he is 14. As an orphan, the grant continues until he is out of school. But Susan cannot prove that he is an orphan because she does not have a copy of the mother’s death certificate. She does not even know the name of the child’s mother. So what happens to her grandson when she dies? What happens if she cannot find a death certificate? Where will he get money? Where will he live? These are all questions none of us can answer.
But she comes here to seek support with issues her peers are also facing. The only answer I know is that with the grandmothers, the children have a little more time before they are alone.
-- Amy Zacaroli

MUSIC

It is quiet in Hamburg, South Africa. The only sounds you hear are the tide of the Indian Ocean, the cooing of doves and melodies of other birds, dogs barking, the wind blowing, the rustling of monkeys in the bush. Sounds of television and that four beat Microsoft Office tune are out of place here – like an errant horn blow when the symphony is at rest.
One other sound is at home here – people singing. Their voices pure, strong, and without any instruments – just the voices God gave them. Umtha Welanga Health Care Center, the AIDS clinic in the center of the main village, is a beautiful place. It is well built, tan cement with a red roof. Colored glass tiles are glued onto the outside front pillars, creating a welcoming mosaic. Huge windows frame the view of the Keiskamma River and the rolling green hills of the Eastern Cape. It has the feel and character of a very old building, which it is, with its uneven steps painted red and slanting floors, but a solid building. It also has good acoustics.
Patients come here day and night, summer and winter, rainy season and dry, for treatment for HIV/AIDS, opportunistic diseases and palliative care. Every morning around 8:15 or 8:20, someone – Thandie an AIDS counselor or a patient perhaps – breaks into song. Just one voice at first, the others listening to see if they know this song, if they have the strength to join in. Then some patients sitting on their beds will start to sing, and a patient stands from her bed and joins in. Then perhaps Rachel, the head nurse, will join in as she’s writing her morning notes on each patient. The men patients in the nearby ward will walk in slowly and join in. Eunice, another AIDS counselor, will climb the steps from her downstairs office and also join. Soon the room is loud with beautiful, strong voices, joined in a praise song.
And one after another, they sing praise songs to God and to Jesus. Even though most of the songs are in Xhosa, you can still feel the spirit. Then they sing the Lord’s Prayer in English and a patient or a visitor may be asked to pray.
Thandie explains that even if patients cannot get out of bed that they at least listen and try to sing along. “I believe if you sing and pray, then God will help you. Some people who come here do not believe in God, but maybe the songs will move them.”
Athwel, one of the four drivers at Umtha Welanga, said the tradition of morning prayers did not start with the staff. He said he has had patients die in the car with him as he’s driving them to the health care center or the hospital. “Before they die, they want to sing their song,” he explains. So they sing, and then they die peacefully with a strong spirit.
The patients in the health care center may be having a very hard time and Dr. Carol Baker will be attending to them. And the patient struggling, and perhaps other patients nearby, will start to sing. The singing unites everyone and makes the patient strong, Athwel explains. Realizing how singing positively affected them, the patients started the routine of morning prayers.
Alec and I have been touched by morning prayers every time we come here. We go home and try to explain it, but I don’t think we do it justice. So this year we’re bringing a version of morning prayers to the United States. To commemorate World AIDS Day (Monday, Dec. 1), Thandie, Athwel and others from Umtha Welanga, will travel to the Washington, D.C. area and sing at several churches in Virginia, D.C., and Maryland. Through their music and their stories, they will share with us the hope and strength their faith brings them from a place full of hope in the face of poverty and AIDS.
-- Amy Zacaroli

School Days

Children at the Hamburg Primary School open every morning with singing and praying at 8:20. This after a long walk up a rutted road to the top of a hill that is one of the highest – and windiest – points in Hamburg. Alec is driving a decades-old Land Rover that is much better equipped to handle the road to the school than our VW Polo rental cars. As we approach the last half-mile to the school, we see a group of about 20 children all dressed in their school uniforms making their way to the school. We stop and ALL 20 children come running and somehow pile into the back of the Land Rover with our four children. They are excited for even just a few minutes’ ride in the truck to the school.
At the school, they all pile out of the Land Rover eagerly and form in about 8 lines in the “courtyard” of the school. They are lined up by grade facing the principal and their teachers. They begin to sing – and sing loudly and beautifully. Some songs are in their native Xhosa, some in English. They sing praise songs and the Lord’s Prayer. Everyday a teacher or a student reads from the Bible – today a teacher reads Psalm 121 from her Xhosa Bible. I look it up later and realize it is one of my favorites and hope that the school children take this message to heart.
“I lift up my eyes to the hills – where does my help come from? My help comes from the Lord, the Maker of heaven and earth … The Lord will keep you from all harm – he will watch over your life; the Lord will watch over your coming and going both now and forevermore.”
They have a prayer and then they bow to the principal, who says a few words. Then they start singing “Marching in the Light of God” and they all march in line to their class rooms. Thus begins a day at Hamburg Primary School. The teachers then go into the principal’s office and sign in, collect materials, and go to their classes. The school looks in much better shape since the first time I saw it in 2004.
Pat Thomas, Alec’s mom, has come several times and spends several months at a time, teaching and equipping the school with shelving for each classroom, a computer and printer for the principal’s office, uniforms for the girls’ net ball team. In February, she had students and some paid laborers to sand the desks and paint them bright colors of the South African flag. Today Alec talks to the principal about securing an extra room so that they can install a few computers for student use.
We visit Grade 1 and Mrs. Luvuno instructed her students to pull out plastic containers that rattled loudly when they handled them. When the students opened them, I saw why. They are filled with used bottle caps, which make quite useful counting manipulatives. The young students practice counting to 10 and 20 and backwards from 10. Some have a hundreds chart taped on their desks.
This is the school for the poorest families in Hamburg. Those parents who work and can afford the transport send their children to a better school in nearby Peddie. A very select few send their children to boarding school.
This school has such promise – the teachers are good and well-educated and the principal and the assistant principal are motivated to connect with other principals in the area and improve the services that the local government sometimes fails to provide.
The goal here is to get parents involved in the school, to have regular meetings with teachers, to ensure their children do their homework, and to hold the staff accountable. This seems so logical to us Americans, but it is a cultural shift to bring this to Hamburg Primary School, where parents may not have had education past elementary school themselves and do not feel empowered to involve themselves.
People here and volunteers like Pat Thomas and 25:40 will be involved in helping the school as much as we can – because these children are all our children and deserve the best we can give them.
-- Amy Zacaroli

Pondering AIDS on the Way to Peddie

Aug 2, 2008

I drove to Peddie today to fill the gas cans for the Landie, and along the way picked up two women near Bodium. They were hitchhiking. I asked where they were headed. “Peddie” one, sitting in the front seat, responded. “That’s where I am headed,” I said. “I can take you there.”
“You are going to Peddie?” she asked, somewhat surprised. Peddie is not a typical stop for white people from Hamburg (or anywhere else), who would usually head to East London or Port Alfred for provisions. In fact, I have learned that many folks in Hamburg don’t even go to Peddie for gasoline, even though it is the closest stop. They will travel the few extra km to Kidds Beach. I am not sure why, but perhaps it not quite so threatening an environment. In any event, I prefer proximity and rather like the hustle and bustle of this small African town.
“Yes,” I responded. “I am going to Peddie.” “Oye, today is my lucky day,” she responded, her bright, white teeth flashing through a broad smile. She muttered something in Xhosa to her friend in the back seat, and they laughed.
We rode quietly for a while, then I asked where they lived and what they do. “Peddie,” the one in the front seat said. “Do you work here?” I asked. It was curious to me why someone from Peddie might have traveled so far to the Bodium area. “No, I work in Peddie,” she said. “I work in the police station.”
“What do you do?” I asked, assuming chauvinistically that she was a clerk or something of the like.
“I am a police officer,” she said. “So is she.” She pointed to her friend in the backseat. I turned to look, and we exchanged smiles.
“Oh,” I said. “I will slow down then.” They didn’t get the joke, or at least did not think it funny. We drove along a little while longer in silence.
“Do you live in Hamburg?” the one in the front seat asked.
“No. I am from America. My wife and I run an organization to try and help people here. We work with a doctor in Hamburg, Dr. Baker. Have you heard of her?”
“No.” she said, plainly.
“Do you know of the health care center, Umtha Welanga? We have assisted with that.”
She remained quiet. From the back seat, the other said, “the hospice.”
“Yes,” I said. It appears the health care center still has not shed its image as a hospice – a place where people go to die comfortably. “Yes… the hospice,” I said. “We are involved in that.” We rode quietly for another couple of minutes, and I asked if they attend churches. Misunderstanding me, they began listing denominations in the area. Methodist, Zionist, Anglican. “Why do you ask about churches?” the one in the back asked.
“I belong to a church,” I explained. “It is why I am here.” I attempted to explain the meaning of Matthew 25:40, how we serve the Lord through serving others, and how those of us who have so much have an obligation to give much more. They remained quiet. The one in the back smiled and nodded politely. I could not tell if I was being unclear, or they were not terribly interested.
“I also want to know what the churches say about AIDS,” I added, broaching this topic for the first time. “Do they talk about it?”
“Yes,” the one in the rear said. “Some talk about it.”
“What do they say?”
“They say you must be in love. You must stay with the one you love.”
“Do they all talk about it, or do some still not want to talk about it?”
“Some do not talk about it. They don’t want to talk about it.”

We drove on some more.

“How else do people learn about HIV and AIDS?” I asked.
“From other people,” the woman in the backseat responded. She explained that she had attended, and assisted with public meetings where people were told about AIDS and how to avoid it. I asked what people thought about AIDS, and where it comes from. The one in the front seat piped up, after remaining silent for some time.
“Foreigners,” she said, almost with a chuckle. “They think it was brought here by foreigners.”
I laughed. “You mean white skinned people from America?” They laughed too. For once, the subtle discomfort of this discussion lifted momentarily. Even so, I was not certain that they did not believe this rumor. “What do you think?” I asked.
“I don’t know,” the one in the front seat said. “They say it came from a monkey, from someone eating the meat of a monkey. That is crazy, I don’t believe that,” she said.
At once it dawned on me. As I tried to formulate a response in my head – that there was this virus called SIV that was transmitted to humans from monkeys in central Africa as a result of their diet of monkey meat, and that it mutated into a blood-borne and sexually transmitted disease that traveled and infected the globe – it dawned on me that this explanation might just seem equally preposterous. Fearing I might do further damage than enlightenment, I simply replied, “yes, the belief is it came from people eating monkey meat. That is what I believe, but no one is certain. It did not come from foreigners, I can tell you that.” She nodded, but remained quiet.
I realized again, at that moment, how far apart our worlds were. We look upon these beliefs that HIV is spread by white people with needles, that it is revenge by the white man on a now free South Africa, or that it is an evil plot from America or Europe, as simply ludicrous manifestations of an uneducated and primitive society. We know they are not true, but we expect South Africans to simply believe they are untrue as a result of the sheer madness of them. And so we offer an alternative explanation, that it came from monkeys. Monkeys are responsible for the demise of modern-day sub-Saharan Africa, not western invaders. You can almost hear the response. “I suppose monkeys were also responsible for apartheid, and for the colonization that led to it?” Suddenly, if not possible, their beliefs about the origin of AIDS suddenly seem quite plausible.

“It is the men,” the woman in the backseat said, after some time. “They drink and get careless, and do not condomize.” I had heard this before.
“Yes,” I said. And seizing on an opportunity to test theories that the unempowerment of women has contributed substantially to the spread of AIDS, I asked whether it was true that once a man wants sex, a woman cannot refuse him.
“No,” she said. “That is not true.”
I remained quiet.

As we traveled on, the woman in the back seat offered her biggest fear about AIDS – that people were just giving up on fighting it. “People just see it as a part of life,” she said. “If they get it, they will die. But they could die of an accident, or something else. It is just another way to die.” I asked if this was because of poverty. That people faced so many other battles in their daily existence, that AIDS just isn’t a primary concern. She nodded, but added that people also just see it as a way of life. We would call it fatalism, I suppose. That there is a certain resignation to death in these parts. But perhaps the better term is reality. Fatalism seems to imply a giving up, even in the presence of some amount of hope. But this is a reality – a hopeless reality that most people are facing.

We arrived in Peddie, and the woman in the front seat pulled out 20 Rand and offered it to me. “No, no.” I said. “I was coming here anyway.” She thanked me, then retreated back into her silence. I noticed that she had remained largely quiet since the discussion of AIDS arose. She simply stared forward at the windshield, and the rough road that was laid out before us. I wondered what had led to her silence. Was she just not interested? Was she uncomfortable? If so, why? Is she, perhaps, positive herself? In this place of such secrecy, one can never know and one can never ask. We parted ways in Peddie. I said I hoped I would see them around again sometime. “Yes,” they laughed. “We see you.”

As I drove away, my understanding of the story of AIDS in South Africa remained the same – following the same fault lines in this discussion as it had in others. Distrust, hopelessness, and men.
-- Alec Zacaroli

Happy Endings

Hamburg, South Africa is a place of hope. Amidst the poverty and the disease, unemployment and alcoholism, hunger and death, there is hope. In the center of this seaside village sits Umtha Welanga Health Care Center – an AIDS clinic bustling with patients, nurses, social workers, care givers, treatment monitors, drivers, cooks and cleaners. This is one of the only AIDS clinics in the Peddie District – an area on the Indian Ocean in the Southeast corner of South Africa with 119 villages. Some patients come in here too weak to stand, bone thin, weakened and wracked by AIDS.
But this is a story of hope and happy endings. On this particular day in late July 2008, the medium-sized white Nissan pickup truck with a cab on the back pulls up to Umtha Welanga Health Care Center and the back window of the cab opens and four little boys clamber out. With them is a woman who looks like she’s in her late 30s. Two of the boys are her nephews, Stephen, 4, and Philip, 8. The truck driver, Major Mangwane, greets us and helps the woman out of the back. He has come from her village 2 hours away because the boys have an appointment to start anti-retroviral therapy to combat the AIDS diagnosis they received recently. The truck is one that 25:40 purchased in March from the funds raised by the South African Wine Tasting held by Rick and Anne Wallace. It is a white truck with the 25:40 logo on it in several places, and across both sides in large black letters it reads “One Child At A Time.” Major is paid to be a driver to transport patients to and from the AIDS clinic for appointments. Transportation is one of the biggest obstacles to medical attention here in the Peddie District. With three trucks and four drivers, transportation is one of the best services Umtha Welanga offers in this vast, rural area.
These boys look healthy. Even though they have tuberculosis and AIDS and the boys are very small for their ages, their illnesses have not wreaked havoc on their organs. Their aunt, Nokuzola, has been proactive in seeking medical attention for her small nephews and AIDS has not progressed too far. You can tell by how the boys play on the tractor parked in front of the health care center. They are rambunctious and happy.
But it belies a hard-scrabble life. Nokuzola is the primary caregiver of her nephews. Nokuzola’s sister-in-law, Stephen’s mother, committed suicide when she learned she had AIDS. She overdosed on medicine and hair formula. This is indicative of the stigma AIDS still has in Africa. Stephen’s mother would rather die than live with and manage AIDS. Stephen contracted AIDS at birth from his mother. Philip’s father is Nokuzola’s brother and he is ill, probably with AIDS. Nokuzola’s husband works sporadically as a brick layer in East London – a major city far from their tiny village. Like many sisters and mothers in Africa, Nokuzola took in her small nephews to care for them when their parents no longer could.
And she’s a good caregiver. The boys have been on tuberculosis medicine for 2 weeks and Nokuzola has been very attentive and responsible about administering the medicine properly. Rachel Johnson, the head nurse at Umtha Welanga, feels confident Nokuzola will be able to follow the complicated regimen for AIDS treatment for her two nephews.
Rachel and Thandie, a caregiver at Umtha Welanga who is fluent in Xhosa, reviews with Nokuzola the complicated dosing, which are different for both boys since they are different weights – a series of pills morning and night. Rachel fills the pill boxes marked for each day of the week and draws pictures of the pills as well so that Nokuzola can refer to them if she needs to when she returns to her village. Rachel also helps her open the safety caps on the bottles, since most people in the rural areas have never experienced having to open a prescription bottle.
I ask Nokuzola about how she has faced having her two nephews with AIDS and whether this has caused her problems in her village or at the boys’ school. She says she faced that original tragedy when her sister-in-law committed suicide. Then she turned her attention on the boys. Others in her village have AIDS and she will tell the teachers at the boys’ school so that they will understand when she has to take them out of school for a few days for follow-up appointments at Umtha Welanga. “I am happy because I know they are going to have a long life,” Nokuzola told me.