South Africa 3 November 2006 (continued) I am sitting in the home office of Gugu Ngcoya, in Sweetwaters, a township between Pietermaritzburg and Durban, Kwa-Zulu Natal province, South Africa. Gugu is head of the Sustainable Agriculture Programme at ACAT, the NGO (non-governmental organization) sponsoring this leg of my trip, a quest for aids survival.
Gugu is telling me about her very personal grief at losing two sisters to aids five months earlier. “When my sisters died in June I felt so empty and depressed. I still feel so alone. I try to find a way of making friends.”
I say, “It’s harder as we get older, don’t you think?” She looks up at me and pulls her fleece tighter around her shoulders. I say, “I think we’re about the same age.” She nods again and is quiet. The emotional pain, her grief, spreads across her face like cracks in a broken window pane. I try again. “You were very close to your sisters?” She finally responds, “They were my best friends. I told them everything. We did so much together.” The words she does not say are, And now I am alone.
I wait a few moments until she can speak again. She says, “I call this a place of emotional poverty. Not the spiritual or material poverty we hear so much about. To move on doesn’t mean something physical. I have struggled so much with this depression. Counseling costs money. How do people who are not in the black middle class cope? I know mothers who have lost all their adult children. I think people cope by doing as much as they can. We must not point the finger at a child who has lost a parent and call him lazy just because it appears he is doing nothing. We don’t know what’s going on in their little minds. Because of aids we are all grieving, all wrestling with depression. I honestly wonder, how do others survive this? If they are Christian they may have the assurance that God will help them. But we really need support, and are not easily understood.
“Here is something much bigger than death and moving on. I started feeling my sisters’ pain while they were sick. At some point she needed to be carried. Didn’t want to eat. We gave her TB pills. I suppose I need trauma therapy. In HIV+ support groups people are fine one day and the next month they are full of sores. Changes happen around us. People are like chameleons. After I completed my aids training, I thought, hey, I know nothing.”
Gugu’s extreme honesty has caught me off guard. I take down word for word what she says–there is so much pain and grief behind her tirade. I never expected that anyone would open up to me like this. I am a stranger. Usually my most emotional interviews are conducted second-hand, through aid workers who have built up trust relationships (usually with children) and then they tell me what they have heard. But here I am, hearing firsthand from a woman who not only knows what she feels, but knows how to articulate her struggle in words that flow over me like poetry of the soul.
I remember sitting there, shaking so hard I could hardly write. My handwriting in the notebook is small and cramped. Gugu is the first person to use the word that I use now myself to describe the pandemic.
“We are at war. It is a war. The loss is of warlike dimensions. In a normal war people are shot and die. In this war they always die a slow death. How do the sick feel? I wonder. In this war you know ahead of time that you are going to die. How do you do that? I used to watch my sisters watch their children. I could see in her eyes, she was wondering will she see their next birthdays? I feel that pain. I wanted to give her hope, but I don’t know where hope is. I am caught between hope and reality. I wanted God to heal them, but it was not His plan. When I say Amen, I look through these eyes and I see these eyes are dying. I had to know, is it time for me to prepare their kids? Will I give them false hope? Sometimes we cried together. When I told my sister’s children, I said, ‘She is sick, her life is the Lord’s.’”
I ask about the reactions of her sisters’ children. The children’s voices. “Their kids are getting stronger faster than me. One of the daughters has her mom’s disapproving eye. This daughter told me, ‘I don’t want people to see me die. I felt so angry after Mom died. (Her father is already dead.) Nobody wants to listen to me.’ She feels very angry and frustrated. She has not only lost her parents, she’s lost her home and friends because she had to change schools and move in with us. Here she is called a coconut by the local blacks.” Gugu looks at me and I shake my head that I don’t understand the term.
“They think she should be living as rural blacks, but instead we are sending her to a white school, which is what my sister wanted. So–white on the inside and black on the outside. Mixed schools in town are highly expensive. Locals look at children like this and say she is not really one of us. Education and housing are another form of apartheid, keeping the races apart.”
We talk about all the teens with babies, and about a child-headed household Gugu knows of where the gogo is 90% blind and suffers from diabetes. In such cases, the gogo is actually more of a burden on the older children than the other orphans. I confess to her my own shock at the sight and smell of aids in the child-headed homes I had visited the day before.
She says, “Then just imagine how huge a shock it is when you find out it is a family member who has aids. When I found out about my sister, I remember staring at her big eyes and understanding where the flesh had disappeared to. She was just skin and bones. I was in a big shock. Then she started taking the ARVs (aids medication) and gained weight. She even put back on her high heels. Then through problems at the clinic, which was administered by a church that was breaking up, she couldn’t get any more ARVs. Her C2 count was too high by then to qualify at a different clinic, so she became worse very fast.
“In terms of my sisters and the pain they went through, I think death was ok because they were suffering so much physically. In terms of my loss, I’m not ok. It frustrates me that they’re just gone. We were always together. That hole is still there.
“It’s a war that attacks people on an individual basis. Look at the statistics, the number of people dying! We are in a war. We don’t need AK-47s or missiles. This is a silent war and people are suffering alone. It takes time before we are willing to share these things with others. With aids there is so much shame and stigma—this causes the silence. We are only now learning how to teach people who volunteer to reach out psychologically and come alongside others. Our government has made aids shameful. The health minister didn’t give any direction. Testing for aids should become a common thing. It should be a crime not to be tested, like driving without an eye test. Aids is not a private matter. There are teachers dying. When they’re gone, we have lost their skills. People are so naive. It should be a crime to have sex without testing. The government says it’s a private matter.”
I ask her about the government grants. She says, “A granny grant will bring in 800 rand (€90) per month. To get a child grant, she must prove both parents’ deaths. How can she do that when the father has disappeared? Where does she get the death certificate of a disappeared father? Impossible for grannies.”
I ask her about the ARVs provided free by the South African government, the only country in the world to ignore the pharmaceutical companies’ demands and provide these drugs free of charge. She says, “Sure the ARVs are free at state hospitals, but most people die on the waiting list. In order to qualify, you have to have a low C2 count, then you go onto the waiting list. Also, you have to show up with your caregiver, but most people are too ashamed. So, most everyone ends up going to private clinics, where you have to pay for the ARVs.”
I ask her about the aids information campaigns. She says, “Sure, there is plenty of head knowledge, but it hasn’t filtered down into practical heart knowledge yet. Why else are there so many pregnant kids? The government grants maternity leave for teens and gives them money for babies. That’s a big thing for poverty-stricken kids. It means they have money for a cell phone.”
I stop writing and ask, “You don’t mean? . . .” She says, “Exactly. Girls are getting pregnant so they can pay for a cell phone. A society like our needs more than just information. We think, I know it, but I can do it anyway. I know one woman who completed the aids training as a volunteer. She still thought you get aids by the jet streams streaking the sky.
“My 17-year old is open about her world of drugs. We’re at war. They feel like I’m judging them. In truth, I am still trying to regain my strength. I’m seeing a psychologist. I write things down. My husband knows of my pain, but not its depth. He feels this pain.”
“What helps?” I ask. She says, “Sometimes just talking. Like this. My psychologist just asks, ‘How have you been?’ We do a lot of praying together. It seems like we always want to fix things. Maybe just listening is enough.”
And with those words, I realize that this brave, smart, classy woman has just given me a compliment. Much of the self-doubt and nausea from the previous day melt away and I sit up a little straighter. The shaking stops. She has left the office and returns with a beautifully woven shawl to wrap around my shoulders. Her daughter enters with a tray of hot tea and the fresh scones I have been smelling all morning. Gugu laughs as I say how delicious they are. “Yes, Aubrey will be jealous when he hears you have had some of my daughter’s scones.” Then she places a hand on my shoulder.
“Anne, there is someone I want you to meet.”