March 15, 2008

An Unfolding Tragedy

When I arrived in Itipini, one of the first families I became aware of was the family whose shack is just up the hill behind the clinic. There were at least 5 children in the family, none older than about 8 or 9, at least one of whom has already tested positive for HIV. The husband and wife together ran a “spaza shop” or little store that sells a variety of small food items. In addition, attached to the shack is a shebeen, or bar, and we can often hear loud music pumped from the house, powered by an old car battery. It was in this shebeen that I was first offered (and declined) the homebrew they drink here that features battery acid as a major ingredient to give it an extra “kick.” (Some day I’m going to write a long post about alcohol in Itipini.)

The reason this family stood out to me was that the second-youngest child was easily one of the most photogenic in Itipini.
(Right, so maybe I didn’t catch her at the best of moments on that last one. All of them are totally candid, though.)

She’s also a budding prima donna – yes, they exist even in shantytowns – and spends most of her time completely ignoring me except when I sing “He’s Got the Whole World in His Hands” and replace “whole world” with her name. Then she does this little dance but keeps walking as soon as I stop.

I learned more about the family when I realized one of our TB patients was the father/husband. He also had HIV and was extremely weak. His wife, also HIV-positive and a past TB patient, had to come for his pills every day even though it’s only 30 feet from the clinic to their shack. His CD4 count was very low, low enough to qualify for anti-retrovirals but he refused to begin the treatment, citing some myths about the drugs and claiming they wouldn’t actually heal him. His story has a predictable ending and he died in late January. He was 32.

The mother in this family has always stood out for me. For one thing, her first name is “NoFirst” (kind of a paradoxical name, isn’t it?). I’m not sure where that came from but it certainly sticks out. For another thing, I’ve never once seen her laughing or joking with the other women who wait outside the clinic. In fact, I’ve rarely ever seen her smile.
She just works and works and works and works. One morning I was in Itipini early and watched as she made trip after trip from the tap to her shack with a 5-gallon bucket full of water on her head. NoFirst was also the patient who helped me with a breakthrough moment last year, when I realized I might have a chance of understanding Xhosa and might be making headway in my efforts to build relationships here.

Now she stands out even more. Apparently it is traditional for Xhosa widows to wear green so lately she has stood out from the ragged clothes most people wear here.
I also continue to be amazed at how hard she works in the wake of her husband’s death. She just has not let up. But then again, what other choice does she have? She’s got a lot of mouths to feed.

Last week, she tested positive for TB again and has begun another round of treatment. (Incidentally, I learned from her government ID then that her first name is “Xoliswa” – roughly “the peaceful one” – and I’ve been calling her that since. But she silences me and says, “NoFirst!” before breaking into a rare smile.) I want to think positive thoughts about this family but the TB diagnosis was a reminder of her mortality and generally poor health. She tested positive for HIV several years ago and a decline, though mild, is evident. I can’t help but think that at some point, perhaps in the not too distant future, she’ll join her husband and leave behind a lot of young children. I live in hope, though, and have been making sure she takes her medications. She’s not eligible for ARVs yet but when the time comes I hope she takes it more seriously than her husband did.

Great Canadian Stephen Lewis, the UN Secretary-General’s Special Envoy for HIV/AIDS in Africa, opens his book “A Race Against Time” by writing that he has spent his last several years on the job “watching people die.” I once heard Lewis speak and found him inspirational and I think the work he has done is just fantastic. But I’d like to quibble with this for a moment. It’s true that he has traveled extensively in sub-Saharan Africa, often paying return visits to certain programs. I have no doubt he has seen people die on those visits and met people who were dead by the time he returned. But I think what is ultimately more heart-breaking is to become familiar with a family, to begin to understand some of the relationships that bind them together, to form memories relating to specific instances with those family members, and, over time, see some of those family members decline and ultimately die.

I'm sure you've heard about “AIDS orphans,” children who’ve lost their parents to HIV. But what do we call those young children who aren’t orphans yet but someday (soon) will be?