AIDS

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.

When Opportunity Knocks

Today I had a meeting with the management committee of one of my VSLA groups to go over how to record loans in our record books. Unfortunately Martin didn't tell any of the other committee members about the meeting (despite the fact that they were all there when we chose the date and time) so it was only the two of us and Dorcus, the wonderful owner of the house where we meet and our group treasurer. Dorcus and Martin are two of my favorite people in Ngai so it was nice to hang out under the mango tree, catch a cool breeze, and talk about all of the things that have been going on in our respective lives.

While we were chatting a woman walking by came over to greet us. After a series of formal and informal greetings she launched into a passionate dialogue which was directed at me but I didn't understand. Martin translated. She said that on the day that I had been in Kula Kula trading center looking for disabled children I hadn't been able to find her. Not to worry! Here she was to introduce herself! She had a disabled child- blind and unable to use his legs- and would be happy to take me to her home. This is always to point at which I can't control my totally inappropriate laughter. I have never gone on a search for disabled children nor have I been in Kula Kula trading center since mid December. It's amazing how often situations like this happen. People approach me with detailed stories of our last interactions, meetings that I never held, promises that I never made. Naturally I've questioned whether they've confused me with someone else, after all, we white people all look alike. The only problem with that theory is that I am the only foreigner in the entire sub-county (a very large area). Plus, they all know exactly who I am.

Curious to learn more, I asked the woman if there are other families with disabled children in the Kula Kula area. Yes, there is a couple who have a child with a very large head- more inappropriate laughter (please don't judge, I was so taken off guard). Then the woman, Timo Betty, revealed that she is the representative for families with disabled children for the sub-county. Given her position she can easily reach out to hundreds of families who need extra support that I never would have been able to find on my own. I asked Martin to tell Betty about his experiences as a VSLA member to see if she thought the families would benefit from the program. As soon as he finished speaking she said yes, they are interested, they are ready to begin (this immediate enthusiasm and speaking for other people is also very common and a more legitimate force than you would expect- I'm a fan). She said that she would mobilize 30 families in the Kula Kula area (including the parents of children with big heads) for a meeting to discuss the idea on Wednesday. From there we will expand into the other areas.

Moral of the story is that every interaction offers something and opportunities meet you when you least expect it. It's amazing how a lady walking down the street, a made up memory or rumor about my tireless search for disabled children, and a little patience, respect, and curiosity has lead to a connection that will hopefully help a lot of people.

Life is in the details.

VSLA

Over the past few months I’ve helped form a support group for people who are living with HIV. When I first meet the people who became the founding members of the group they told me about the wide variety of problems they face. While the issues are extremely varied, poverty was an overarching force. Poverty kept them from being able to buy medications that help fight opportunistic diseases. Poverty makes it difficult to send their kids to school (all schools, including the free government schools, charge fees). Poverty keeps nutritious, but expensive fruits and vegetables out of their reach leaving them with bland and repetitive diets lacking in vitamins and minerals. Poverty results in not having money for transport when they get very ill and need to go to the hospital in Gulu. Not shockingly, poverty makes every aspect of life harder.

After some consideration and failed attempts at addressing other issues we decided that what the group needed was a VSLA- a Village Savings and Loans Association. Millions of people around the world don’t have access to appropriate banking systems either as a result of their remote location, illiteracy, or lack of finance (most banks expect their clients to have a certain amount of money and financial activity that might not be realistic for everyone). VSLAs are banking on the village level. A group of 15-30 people meet at a given time and date (usually once every week or two) and, using a set of rules decided by the group, save and loan money. Each group member can ‘buy’ between 1 and 5 shares per meeting. My groups have set the cost of each share to be 1,000 shillings- about 40 cents. The savings, along with records of the transactions, are stored in a strong metal box at the treasurer’s home. The box has places for 3 individual locks and 3 different group members hold the keys to ensure that no one has access to the money outside of the meetings. Members are able to take loans out of the group savings with a monthly interest rate of 10%. I have been told by my father, a banker for 40 years, that 10% is an insanely high interest rate and would be illegal in the U.S. BUT there is a benefit for the members. After the savings cycle ends (about 1 year) the group divides the money in the box according the number of shares that each person has bought. Because there are no external fees to pay and the biggest expense is the cashbox, the average return on savings is between 30-60%, also insanely high according to American standards.

Not having any previous experience, I was thankful that there’s a ton of literature on VSLAs which allowed me to start the program with my group. Unfortunately, we still had a ton of challenges. The biggest issue that we faced was that my group members were just too damn understanding. In order for a VSLA to function you need to have no more than 30 members and they need to come consistently. Every training meeting that I held seemed to be comprised of a completely different group of potential members. We discussed this issue every time and every time their leading spokes person, Dorcus, would say that we needed to give people another chance, they’d be there next time.

One day I finally hit my breaking point. Because of the inconsistent attendance I had to continuously teach the same material at the meetings and I was starting to loose faith in the fact that it would ever come together. I spoke with them in very candid Lango. “Jo pe kan, kob WOT!” “The people who aren’t here, tell them to GO!” I asked if they would let someone run up and steal their money as we were sitting there and explained that they were doing exactly that by allowing people who didn’t bother to come steal an opportunity from them. They got it. Two weeks later they managed to divide into two groups (30 members each) and we officially started saving.

In the end, the point that we needed to hit was that I needed to lay off the rules a little bit and they needed to start following them. What they needed to understand was that we never would have gotten started if they continued to accommodate people who didn’t make a commitment. What I needed to accept was that a lot of the absences from the meetings were both understandable and unavoidable. Members consistently miss meetings because they have to go get medications from various NGOs, they have appointments to have their CD4 count tested, or they’re sick- a lot.

Over time we’ve reached a mutual understanding- I’ll make sure they know which rules are flexible and which aren’t and I trust that they will take them in and make them work in a way that fits their situation. I’m FINALLY happy to say that we’re makin’ it work.