June 7, 2008

“They are not nurses… they are murderers.”

I’ve just finished a truly terrific book about the genocide in Rwanda - We wish to inform you that tomorrow we will be killed with our families by Philip Gourevitch. I mention it because one passage seemed particularly apt to describe something I deal with every day.

The generic massacre story speaks of “endemic” or “epidemic” violence and of places where people kill “each other,” and the ubiquity of the blight seems to cancel out any appeal to think about the single instance. These stories flash up from the void and, just as abruptly, return there. The anonymous dead...become their own context. The horror becomes absurd.
Gourevitch’s point is that he wanted not to see memorials to places where the mass murders happened but to talk to people individually and learn about the genocide that way.

Before I arrived in South Africa, the HIV epidemic was similarly “absurd” and abstract. I had no context other than reports of hundreds of thousands of people dying every year. Since I’ve been here, as I’ve already written, the HIV epidemic has been reduced/expanded to the stories and deaths of individuals - friends - and those stories have reached down into my very core and changed how I view HIV and, more generally, the world. I hope that in telling some of these stories to you, the epidemic has similarly begun to seem less abstract. It is thinking of the “single instance” - with the knowledge that there are so many other people suffering in the same way - that is so important.

All this is a long way of introducing Nosisi, whose funeral I attended last weekend. In the interests of making Nosisi not a statistic but a story, let me tell you about her, even though her story is similar to many I have told before.

Nosisi first came across my radar screen in mid-April when she came into the clinic, looking very weak and thin but still able to walk and take care of herself. We knew she was HIV-positive but she had not had a CD4 count in nearly 18 months when positive people should get one about every 6 months. At her last CD4 count, she was below 200 and so had qualified for ARVs a long time ago. To complicate matters, she had lost her government-issued ID, which would make it more difficult - if not impossible - for her to get treatment. We drew her blood for the test and sent her own the way to try to begin the process of getting on ARVs.

About two weeks later, I heard that she was still quite sick was 44 and was not making any progress on ARVs. It turns out that the government clinic up the hill would not do a CD4 test on her blood if she couldn’t provide proof of her identity and date of birth and without an ID she couldn’t. (This is not the first time that the absence of an ID has caused these sorts of problems for people. If it weren’t so tragic it would be ironic given the strong resistance during apartheid to the pass system, where blacks had to carry pass books with them. To me, the ID appears to play a similar role as the pass once did.) The woman who told me about Nosisi’s troubles then said, in perfect English, “They are not nurses...they are murderers. They are letting her die.”

Sometimes I’m able to sweet-talk the nurses at the government clinic into providing services to someone without an ID but I ran into a particularly obstinate one when I tried for Nosisi so we set off to the Department of Home Affairs (commonly called the Department of “Horror Affairs” for its bureaucratic ineptitude) to get a replacement ID for Nosisi. This was an experience in of itself, taking a weak and emaciated woman who could barely walk by herself first to the pharmacy to get the pictures and then to Home Affairs and the unbelievably long line. It never ceases to amaze me how people here can wait so patiently for so long. Fortunately, my friend Noxolo, who grew up with Nosisi, came with us and she sweet-talked the guard into letting Nosisi to the head of the line. Even then, it still took a good three hours to get Nosisi sorted because of various breaks for lunch, tea time, and the computer crashes.

By the time we got Nosisi’s CD4 count done (it was now 44), she was getting quite weak and she could no longer keep down any food. So when we started taking her to ARV appointments, they would put her on IV drips (eventually they went in her neck because her veins were so weak on her arms) and she would get referred to the hospital...and make no progress on getting on ARVs. Of course, the hospital is always dealing with a crush of similar such patients and she could easily get lost in the shuffle. It went on like this for at least two weeks - Nosisi couldn’t keep any food down and so got progressively weaker but the symptomatic pills for nausea and upset stomachs she was prescribed didn’t get to the root of her illness. Eventually, she could no longer walk and I started either wheeling her everywhere (at one point “borrowing” a wheelchair from one clinic and getting in deep trouble with the nurses - never steal anything if you are the only tall, white person in a given community) or carrying her, bride-crossing-the-threshold style.

What was so difficult to watch in this whole process was how Nosisi’s will to live just evapourated. I think people here sometimes have too much faith in just what nurses and doctors can do to make them better. Though she never expressed this to me in a language I could understand, I could sense that Nosisi would anticipate each visit to a clinic or the hospital, hoping that they might finally give her something that would make her feel better and make the food stay down. Each time she threw up after taking whatever new pills she had been given, I am sure she came closer and closer to despairing of ever making it through this alive. I wanted to give her a pep talk and tell her how she just needed to persevere a little longer and get ARVs and how they would eventually make her feel better but I lacked the vocabulary to do so. Even my intentionally upbeat attitude around her did nothing. It got to the point where she seemed to be crying all the time and with her long hair untended - no energy for that - and her sunken cheeks, she had this wild look to her I won’t easily forget and that was disturbing to be around.

Nosisi was eventually moved into our sick bay, where it is a little more comfortable than the shack she lived in. We kept going to all the appointments - each trip was a major undertaking and required her to expend a massive amount of energy - but she died on a Monday morning just before we showed up to open the clinic, about a week after going into the sick bay. The funeral home came that morning and took her away as some women of the community sang and prayed.And that is how I knew Nosisi, one of approximately 1000 South Africans who died that day from AIDS.