Today the first person who I knew personally died of AIDS. I didn’t know her well, in fact I didn’t even put it together when I initially heard of her passing, but it’s still something notable. A sad milestone.
A few months ago I was walking past the health center late at night. It was very dark so I didn’t notice the people outside until someone called me by name- a rarity back in November. I turned to them, prepared give a friendly greeting but was startled when the light of my torch fell on a frail, naked woman. She was sitting on the concrete bench that wraps around the unit as a friend bathed her, she was too weak to stand. Sensing my surprise she reminded me of her name and that she was a teacher at Ngai Primary. We had recently met when I was visiting the school. We continued talking as she wrapped herself in a beautiful laso and, with the support of her friend, stumbled into the ward and was helped into one of the three tattered, dirty hospital beds. I said goodnight and told her I’d come back to check on her the next day.
I went back to Junior’s house, I was still staying there at the time, and told her that I had just been talking to a teacher in the ward. “Auntie, that woman is very sick,” she said. “Malaria?” I asked- everyone always has malaria. “No, she has HIV and is refusing treatment. No one in her family knows she’s sick, she says she doesn’t want to burden them. She was brought here by her coworkers but they can’t stay. I’m really fearing that she’ll die.” Junior never says that.
I went back the next day and found Betty in bed, her head hanging off the side, vomiting bile into a bucket on the floor. I sat with her and some of the teachers. I found myself speechless as she calmly and eloquently explained how much pain she was in. How every inch of her body tortured her. I knew what I wanted to say. I wanted to beg her to get treatment. Suck it up, tell her family, live! But how? How do you talk to someone you just met about something that you’re not supposed to know that they are literally willing to die to keep secret? In truth I know that it’s possible but at that moment all I was able to say was that it’d be okay, she’d get better- words that I never say when I don’t believe them but words that I used that day to fill the horrible stale space of the ward.
Laying in bed that night I decided that I’d talk to Betty the next day. Try to convince her to go for treatment, help walk her through it. When I arrived at the ward I found her bed filled with the body of yet another very sick person- probably malaria. I went to find Junior. She told me that the health center staff and teachers had finally convinced Betty to face her family, face her secret, her shame- to live. They had come for her that morning and taken her to a facility in Lira better equipped to handle such cases. I was so relieved. Betty would be okay.
As I mentioned, I didn’t put it together when I heard that a teacher at Ngai Primary had died. All of that took place months ago, I hadn’t thought about it in a long time. It wasn’t until talking to Junior that it all came together. It’s likely that by the time Betty came to the health center she already had AIDS. With treatment people can live a long time with HIV.
While AIDS obviously makes people physically sick it’s often regarded as a social disease. It’s spread through social ties and activities (in Uganda HIV is most commonly spread through consensual sex and most new cases come up among married couples). The social stigma surrounding HIV is a huge part of what makes the virus so horrible and so hard to fight. Stigma keeps people from talking about the virus and getting tested. It closets huge numbers of people who are positive, potentially leading to activities that put themselves and others at risk. Living positively, openly, takes courage and tenacity. I can understand why so many people keep quite.
We all know people who have been diagnosed with fast moving cancers and passed away within a few months. We’re always told that any of us could be hit by a bus tomorrow, live for today. So why is the worst, most feared illness of our time one that is willing to potentially grant us decades of life before claiming it’s victims?
The other day my supervisor was asking me if we had AIDS in the U.S. I said yes, we actually have the most recorded cases of any country in the world (keep in mind the massive population and relatively easy access to medical care and testing facilities). I explained that the spread of HIV functions differently in the U.S. It used to be most prevalent in gay men, now the highest rate is among IV drug users. It’s also become an ever-growing issue in the inner cities. Historically, HIV has flourished in America’s marginalized communities. “Yes,” he said. “Immoral communities.” “No, marginalized communities.”
Reflecting on Betty’s death I can’t help but think of my VSLAs. Literally 60 of my favorite people in Ngai are HIV positive. Both of the groups are so full of life. Our time together is always full of laughter, hugs, jokes, and of course a lively exchange of mangoes. It’s not uncommon for someone to do a little dance before taking a seat on the papyrus mat. They’re phenomenal. Sitting there sometimes I remember that I’m the only person who doesn’t have HIV. Strip away the bodies and I’m surrounded by virus. It’s humbling. But most of the time they’re just my friends. People I want to help- connect with resources and NGOs, train in some simple things that can help improve their lives. And they help me too, bringing me mangoes and papayas, watching my bike when I buy little fish for the cats in the market, making Ngai feel warm. Like home.
I would give an honest and modest estimate that at least 1/3 of the people who sell food in our tiny little market are VSLA member. A striking view when you look at the trading center through the lens of the epidemic (officially our community is 8% HIV positive but the health workers all feel it’s much higher). One of my absolute favorites is Esta. She’s always the first person to greet me when I get to the market and the last I say goodnight to when I leave. I’ve been buying her tomatoes for months even though they are by far the worst. We even have a pseudo secret handshake/dance we do every time we see one another. She’s amazing.
Esta invited me to her house about a month ago. We hung out, listened to music, ate mangoes- it was nice. She showed me pictures of her family. Her husband is an officer in the Ugandan army. Her three children are in boarding school- a Ugandan norm if you can afford it. We often talk about going to visit her daughter together. We came across a picture of a baby boy sitting on a blanket. “That one died,” she said. “I’m so sorry.” “He was born with AIDS, only lived a few months.” A moment went by as we just sat.
So my personal experience with AIDS in Africa is looking something like that. Something I drift in and out of. Sometimes it consumes me completely, overwhelms me into a state of melancholy. Other times I forget about it all together as the joys of everyday life leave no space for disease. Like all of the big horrors of Northern Uganda, I seesaw between feeling like it’s an insurmountable issue that affects everything and an isolated challenge of the few. I think it’s all of those things. The polarized reactions that I have are all strangely valid. AIDS is a big problem. It’s a big deal and it does affect everything and everyone. It’s also one piece of things. One piece of what’s happening here. One piece of the people living with the virus. I, and they, are unwilling to give it everything. So I’m finding the seesaw strangely comfortable. A good vantage point for now. I’ll continue enjoying the spirit of my VSLA friends while remembering their unique challenges. We will all continue to attend burials of the people claimed by the epidemic and pay respects to those whose lives have been forever changed by AIDS. We will continue to feel its presence, respect it, live among it, and look past it.