Rattling the gates: A Peace Corps volunteer's chronicle of HIV life and AIDS death in Swaziland
02 June 2005
by Alyson Peel
Simphiwe and I went to visit people from the neighboring community and to take some food to those in desperate need. Our first stop was to see Mazaza. He looked good: a broad smile stretched across his face, his cheeks full and hinting of health. He was sitting up off the ground a little, on a plastic jug or box turned on its side. We left Mazaza in good spirits and thanked the gogo–which means elderly woman or grandmother–who cares for him. Perhaps she is his mother, I am not sure, but she is sangoma, a traditional healer, and she talks to her ancestors. I wonder what she says to them in these dark times. I also wondered Mazaza missed Mandla.
The day we first met Mazaza, he was sitting on the ground outside his round stone, stick, and mud hut. Mandla lived in a tiny mud, stick, and stone hut perhaps 15 feet from Mazaza’s rondeval.
Mazaza had been in an accident some time ago and his body was badly burned and broken. Most of the fingers had been burned from his left hand and one side of his body is covered in scar tissue. His right leg is broken about 5 inches above the knee and when he lifts his thigh up from the ground with his hands, the knee and lower leg simply fall away from the leg, attached only by skin and ligaments. The leg had never been repaired.
When I sat down on the ground next to Mazaza, tears ran down his cheeks. He was hungry and he seemed broken in other ways less tangible.
Mandla was emaciated and desperate looking, and his tears were less subtle. Unlike some more tightly constructed Swazi mud huts, Mandla’s was a makeshift shelter that provided scant protection from the elements. He was sleeping on the ground, on damp dirty blankets, which would serve to exacerbate his illness. We learned that someone had set fire to his previous home. Mandla had been treated for tuberculosis for quite some time and was not improving. My feeling was that he was not being treated for the underlying cause and I suggested he come into town for HIV testing.
Since that first visit we have been back several times–to bring food or simply to see Mazaza and let him know he is on our minds. On our second visit, Simphiwe talked the owner of the local lumber yard out of some old discarded planks so Mandla could be elevated a few inches from the wet ground. The owner gave us the old planks for free but charged us to take them out there. There is so little for free here.
A week later Mandla was dead. Simphiwe was disheartened.
I told him that, for the last week of Mandla’s life, he didn’t have to sleep on the cold wet ground and that he should take heart that he had provided some small comfort to someone at the end of their days. Sometime that has to be enough, especially here.
We walked further down the dirt road to find the gogo with the two tiny children whose faces haunt me at night.
Ah, this is a sad story of an old woman whose leg has been broken for more than a year. I gather she had some treatment at one time, but it was ineffective. When we first encountered her, she was lying on a small bed in a dank, smoke-filled hut, her broken leg swollen and fluid-filled. Two tiny children were with her in the hut, one about three feet tall with huge liquid eyes standing naked in a small bucket of dirty water, trying to give himself a bath. His smaller brother hunched in the corner. They looked feral.
The gogo explained that her daughter, the mother of these small ones, dropped them off in July and took off to find something better for herself on the outskirts of Manzini, in an area known for its sex trade activity. The gogo can’t leave her bed and cooks for the tiny ones in a pot by the side of the bed, hence the smoke-filled room. She stopped eating some time ago because she can’t get out of the bed to go outside and relieve herself. She lifts her shirt to expose folds of flesh that indicate she was heavy at one time. She says she asks God to take her every day and is considering taking her own life.
If this woman dies, no one will know for days, or maybe weeks, and these tiny children, whose faces disrupt my sleep, will be climbing over her dead body trying to wake her, helpless about what to do next.
There is a small maize field outside the hut and we learn that some months ago, during a time she was feeling better, the gogo dragged herself on her elbows to plant the corn. It is unlikely the corn will ever be harvested, unless it is done so by thieves.
But today the gogo is feeling better and is actually sitting up on her bed. My slight relief is dampened by the coughs and labored breathing of the little ones, who have recently contracted the flu.
Someone is being sent to find the mother so the gogo can go in the hospital for a couple weeks to have her leg treated. We told the gogo that, if the mother cannot be located, we will try to find someone who can care for the tiny ones while she is hospitalized. I asked Simphiwe to have her get someone to contact us if the children become sicker. Given the situation with the mother, it is reasonable to be concerned that one or both children might be HIV-positive.
Before we left, I knelt and put my hand on each child’s chest, feeling their little hearts beating and wishing that some of my own health could somehow be transmitted through my skin and their threadbare shirts.
We continued the road, hoping to find Babe M’s place. We asked some small children we meet along the way.
La pha. Over there.
They followed us at a distance, giggling and shouting encouragement. On my first trip to this neighborhood I did not meet Babe M. He was out working his fields. But I did see his children. His wife died a couple years back, bleeding to death from complications of childbirth.
Babe M cares for his four children and cultivates several fields to provide for them. The youngest child, two years old, was being carried on the back of his older but small sibling. The infant was covered in scales and oozing sores such that his eyes could not open, barely recognizable as human.
It pained us to see this child and I told the woman with me to have Babe M bring the child in for HIV testing. The next Monday, he was sitting in the testing room, holding this little one close to him on his lap. Actually, they were holding each other.
The doctor I had met previously in the ARV clinic passed by and came over to greet me. He took one look at the infant and said the baby needed to be hospitalized. I told him, unfortunately, that the mother is dead, there are no other relatives, so there is no one to stay at the hospital with the child, which is a hospital regulation because of the severe nursing shortage.
He told us to take the baby to the lab for HIV testing but that it was his professional opinion the child was suffering from congenital syphilis. He told us to come by the office at 11, bypassing hours of waiting at the clinic.
It turned out the baby was negative for HIV and had been receiving treatment for two years for external symptoms–the sores and upper respiratory sequelae–nearly at the expense of his life. I saw Babe M with the baby three days later when he was registering one of his other children for primary school.
The change in the infant after just a short course of antibiotics for congenital syphilis was striking. Today, about four weeks later, almost all the sores are gone from his face and the eyes are open. The child is cooing, animated. There is a big open sore on his neck and Babe M is afraid he might relapse. We have agreed to meet at the clinic again and see the doctor together.
Babe M and baby M still cling to each other as if sharing a pact of grief at the loss of the mother. But today a renewed spirit and vigor is also shared between them. Babe M is grateful to us and sends us off with a bag of peanuts and a smile.
Simphiwe and I walked together the several miles back into town. I am happy to be in his company. I delight in his company. If there is a hero to this Swaziland story, it is in someone like Simphiwe. He is a 29-year-aold Swazi whose gentleness, equanimity, and grace under pressure leaves me in a constant state of awe. He is a volunteer with a local NGO overseeing HIV efforts here. For four years, for less than $20 a month, he gets up each day and goes out to make the world a better place. But his is a story for another day.
He and I part ways in town and I head back to the orphanage. The girls are busy playing, so I head out for a long run. When I get back, I am greeted by the housemother who has just returned from Manzini. I can see by her face that something is not right. She tells me her son, in his 20s and living in the city, died yesterday. I wrap her in my arms, knowing that for this there is no comfort.
The day began with a rattle at the gate.
In Swaziland, it is common practice to stand down at the end of the entryway to the homestead, which can be quite a distance from the actual house, and either rattle the gate or cry out ekhaya until you have caught someone’s attention. This morning my attention was caught by Babe M. He stood outside the gate with the baby on his shoulders. I have seen them thus so often that it sometimes seems they are one. Even when cultivating his fields, there perches the small child on his back.
We are off to the clinic, which is held in a ramshackle building adjacent to the hospital. Unlike the hospital, the clinic has some semblance of order, although it is just as dingy and in as much need of repair. The room is filled with scores of patients seated on old church pews. Perhaps 15 people packed in each of about 10 pews spaced about 8 inches apart. Overflow snakes out the door. Those waiting for blood pressure testing sit on smaller benches by the nurse’s station. In a corner, partially curtained by an old stained sheet, sits the intake nurse.
Babe M and I are too late for the hymn, which starts the morning intake, and take our places on one of the last benches available. After each person hands over their records–mangled pieces of paper documenting previous visits–they are sent to the consulting nurse. We inch along the benches for two hours before we reach the intake nurse.
People here are very sick and at the rate at which one makes one’s way to intake, it is possible to get a good long look at misery. Sometimes it vomits at your feet.
Babe M does not need his blood pressure taken, shaving an hour off our wait, and we move to a long bench to repeat the snake crawl. Fortunately the nurse is a young man from Zimbabwe who I have met before. He directs us to a long, dark hallway where we are to wait for the doctor.
We are number 18, black, not to be confused with blue or red, signifying other consult rooms. I leave to get bananas and bread for father and son. When I get back, the lines have not moved. We have been here for three hours. At about 1 p.m., four hours from our arrival, the doctor will see us. The doctor is a woman, rare here, from the Congo. She takes the baby’s history, prescribes the medication, and we are off. The pharmacy, we learn, is closed until 2 p.m. I take my leave of the two, my main purpose served. After collecting his meds, Babe M will walk the several miles home with his son clinging to his back.
Today, the rattling at the gate is a sadder story. Lindie is eight months pregnant and has four children. The oldest, Linda, is a boy from a previous marriage and his father is now dead. Linda lives with his gogo because Lindie’s new husband did not want to support Linda- who is 12 years old and HIV-positive.
Sores began to appear on Linda’s legs when he was six. A year later, he had a bad bout of tuberculosis. He has gotten progressively worse, bearing sores like tiny angry volcanoes that erupt on his lower extremities. He has upper-respiratory distress consistent with his infection. Vacant look notwithstanding, Linda is a lovely and quiet child.
Despite all of these symptoms, he was not tested for HIV until last month, and we are taking him in today to have his blood drawn for a CD4 count.
An estimated 40 percent Swaziland’s adults are HIV-positive. Most young women between the ages of 18 and 25 are either pregnant of nursing a small child. The majority of these women have not been tested.
In Swaziland, most of the attention is being placed on the adult population, many of whom will surely die. But very little attention is given to the staggering number of HIV babies currently being born who will begin to get sick. A recent study showed that, while about 30 percent of HIV babies will not survive their first year, roughly 40 percent will survive their 5th birthday. We will start to see these children in the primary schools in great numbers within a few years. We are already starting to see them now.
The nation’s schools are not prepared to either identify or support these kids. If you estimate that approximately 30 to 50 percent of babies born to HIV mothers contract HIV, and that approximately half of all pregnant women are HIV-positive, you can figure that about 15 to 20 percent of all babies born in Swaziland this year will be HIV-positive.
I took Lindie and her child down to the Town Board. Simphiwe agreed to go with us so that they would fully understand, in their own tongue, what is happening to the child. Simphiwe explains to the mother that HIV can take 6 to 10 years to develop to AIDS and that it is likely that Linda contracted the virus during childbirth and that her unborn child is at risk. If she tests positive, she can be treated with meds that will reduce the chance of mother-to-child transmission. If Linda is placed on anti-retroviral therapy, she must make sure he takes the medication regularly or he will get worse quickly. She voices fears that the meds may make him sicker. We agree, but add that the therapy will save his life. In Swaziland, that is sometimes the choice, either live sick or die. Lindie agrees to be tested.
On our way back to the hospital, a lovely, pregnant and distressed woman stops us. Lindie, who speaks some English, explains to me that this woman is in to get her husband’s CD4 results, and hopefully some medicine for her husband. He is too sick and weak to stand. I’m not sure what the women wants from me but I agree to go with her to the ARV clinic. The results of last week’s test have not come back and won’t be available for another week. If the count is less than 200 and you are symptomatic, a week can kill you here. She wants me to see her husband. She wipes an eye, tantamount to sobbing in a country that shows little grief, having had to bear so much of it. I walk her home down a narrow, rocky dirt road barely wide enough for a car for several miles. I wonder how she will make this trip at the end of her pregnancy. At the end of an overgrown footpath we reach the homestead–three small mud and stone huts and a mangy dog with an angry red eye.
Sikhumbuso, her husband, is lying strangely twisted on the bed. There is no muscle mass left on his body. He will die. She says he stopped talking two days ago but, oddly, he has a piece of cooked potato pressed against his mouth. Apparently he is able to eat a little, but the diarrhea keeps him from deriving any nutrients. After five months in Swaziland, I am still amazed at how little it takes to sustain life. That this man breathes at all is an enigma to me. If he has any awareness of our presence, he gives no sign. I suspect his mind is somewhere preparing for its final journey.
There are no neighbors with cars to take him to the hospital. Christ, there are no neighbors with electricity, phones, or running water. There are no neighbors with much of anything, not even hope these days. Back in town I find a plump Swazi in a battered old Toyota pickup who delivers Sikhumbuso to the hospital for E20. Expensive. There are no other solutions; it is too far to carry him.
They carry Sikhumbuso to the truck. It should take only one with all of his weight loss, but Sikhumbuso is long and cumbersome. His pregnant wife has dressed to accompany him. At eight months pregnant, she will sleep under his bed on a sponge pad during his stay. I watched them drive away knowing in my heart it is too late but also knew the gesture would not be forgotten by the family.
I was late getting home to begin my community rounds. We are doing a door-to-door census of who lives at the home, who is orphaned, who is sick, who has died. The grinding poverty that greets me at each homestead seems somewhat less brutal. It is relative and here you can always find someone who is worse off.
I headed into town with the intent of checking on the sick man at the hospital. I am sitting in a small “canteen” where the women cook and serve customers at old picnic tables covered with torn pieces of old plastic tablecloths. I look up to see S’s wife standing at the edge of the table looking down on me. What I am able to gather, with the help of someone who speaks some English, is that they denied him admission. She does not know why. She says she will try to bring him to the ARV clinic next Wednesday if she can get transport. I do not tell her that he will not live that long.