Things with the HIV/AIDS support group have been hard. Last week some members of the support group told me that Portia, a woman I visited a few weeks ago, is doing very badly. She hasn't been taking her ARVs (anti-retrovirals), or meds for TB. She hardly eats, and when she does it's cokes and junk food. She has given up. So we went to take her to the clinic. She was skinny when I saw her last time. Now she has wasted away even further. As we helped her into her shoes and out of bed I thought we were helping a child. She had the body of an eighty pound thirteen-year-old under her baggy clothes. Bukelwua, one of the women I have interacted with the most, told me that Portia wieghed 68 kilos (over 150 lbs.) before she got sick. When I visited her a few weeks ago she was not doing well, but it struck me that she was pretty and must have been beautiful when she was healthy. I am posting her picture again, at left. Last week, Portia looked like she had aged ten years since the first time I saw her and took the picture. She is my age, but looks forty-five.
Bukelwua and I took Portia to the clinic, filled out forms, and waited two hours before I went up and asked what was going on. They had only one doctor that day, and told us to come back in the afternoon. Bukelwua protested that if we left and came back we would only have to wait another two hours before being sent home and told to come back the next day. It was extremely frustrating, and we ended up taking Portia right back home to her bed, which is where she had complained all along she wanted to be. Fortunately, Bukelwua and Pumla, another woman in the support group, talked to the doctor who attends the group meeting, and made arrangements to have Portia put into the hospital. Pumla and I picked Portia up the next day and took her in, where she was put on a drip and would have nurses to ensure she takes her meds.
I drove Pumla home afterward. She was at the training I led last week, and has gone on visits like this one with me. I have interacted with her on a number of occassions, and know her as well as I do anyone at JL Zwane who is not on staff. I asked her whether she had ever wanted to give up like Portia seems to have done. She said, "Oh yes. When I was first diagnosed I had already had the disease a long time. Then I started getting sick. And weak. I just decided 'I am going to die.' I was ready to give up. But friends encouraged me, I took my ARVs and now my CD4 count [what Americans call T-cells] is very high." Pumla looks great now, and it's hard to believe that she was so sick only about a year ago. There are several people in the support group who, like Pumla, should be on promotional materials for ARVs. Some people have had the disease for 10 years, and with ARV treatment they are still more or less as healthy as the day they were diagnosed. One such woman told me that, like Magic Johnson, the HIV virus doesn't even show up in her blood-tests anymore (which doesn't mean she's cured, of course, but the disease is well under control for now).
But looks can be deceiving. Bukelwua came in yesterday afternoon, and asked how my weekend was. "Fine", I said. "And yours?" Bukelwua had had a hellish weekend. Portia is doing very badly. But what had really made the weekend terrible was the sudden death of another group member named Pumla on Sunday. She had gone out with friends on Friday, and came back with a chill. By Saturday she was shaking with cold and vomitting. Sunday she was gone. Just like that. I misunderstoond Bukelwua, and thought it was the Pumla that I knew. You can imagine my surprise when Pumla walked into the office where I was working a few minutes later! We took two other members of the support group to visit Portia at the hospital, although the security guard gave us a hard time because visiting hours were over. Bukelwua told him I was the umfundisi and we were there to give a prayer. I said that was right, and that we would only be a few minutes. The guy grudgingly let Bukelwua and I come in. The ward where Portia was staying was set up the way hospitals must have been years ago in the US, or in a military hospital, with all of the hundred patients in the same room. I wondered how many of them were there with complications of HIV. We found Portia, but she was completely knocked out and unresponsive, whether from medication or sickness I don't know. Her face looked fuller and her skin fresher, but her unresponsiveness was a bad sign. We planned to go back to visit on Thursday, but I learned today (Tuesday, contrary to the date at top) that Portia had died early this morning. Another sad casualty.
Yesterday I also paid a visit to another woman with AIDS whom I have seen many times. She is stuck in bed, and I have never seen her standing on her feet. We were just delivering clothes this time, but my first few visits to her in my early weeks here were some of the most emotional I have done. The first time I went with some women from staff, we had just heard about this woman's condition from someone in the congregation. We arrived to find her sleeping on a wet cardboard mat on the floor, one of her children also sick and sleeping under the blankets with her. Even when she is sick in bed herself the children want to crawl in with her when they fall ill. You can imagine how terrible it was to see a woman living like that. Her face was taught and thin, almost skeletal, and when she sat up you could tell that she had been a full-figured woman at one point. Now the flesh beneath her clothes drooped down weakly, like the body of a woman much older. And yet her teeth are perfect, so nice that one of the ladies with me asked whether they were false ones (I had been wondering myself, but would have felt rude to ask). We said a prayer, came back later with some food and blankets, and went back to the church.
The next Sunday, a member of Siyaya who also works on the grounds and does maintenance heard about our visit to this woman and told us there was a bedframe and mattress that had been sitting in the garage for months. Sure enough, there it was, and in great shape. We got a group together, found someone with a truck,
and drove the bed to the house. We stayed over an hour, with a big group of church ladies praying outloud giving thanks for the bed and asking God's help. It was pretty emotional, and I wished there was more I could do. I dropped a 50 rand note on the floor by her bed while no one was looking. I was asked to pray on the spot at one point, which chaplaincy experience had helped me with, although I was still a little uncomfortable given the situation. I have had lots of experiences like that since then, and we have visited this woman many times to bring food, blankets, and clothes, and giving a few rides to church to her sisters and their kids. Most important, I think is that we show up and show that we care. Chaufering is actually a pretty frequent job for me here. Shaeffer the chauffer. Her English name is Rosie, and I am really moved by the gratitude she expresses when we visit. She has been moved to tears on a number of occasions. The expectation of gratitude was not a condition of my involvement in this work here. I don't feel it is something we are owed. So this makes it especially moving when someone is so thankful, especially when what we can provide seems so small compared to the size of the problems faced by those we visit. I feel like I get far more out of the visits that I am able to give. I only wish I could do more, somehow. But, at least for this one person, what we are doing is making a positive difference, and she takes every opportunity to let us know.
Bukelwua and I took Portia to the clinic, filled out forms, and waited two hours before I went up and asked what was going on. They had only one doctor that day, and told us to come back in the afternoon. Bukelwua protested that if we left and came back we would only have to wait another two hours before being sent home and told to come back the next day. It was extremely frustrating, and we ended up taking Portia right back home to her bed, which is where she had complained all along she wanted to be. Fortunately, Bukelwua and Pumla, another woman in the support group, talked to the doctor who attends the group meeting, and made arrangements to have Portia put into the hospital. Pumla and I picked Portia up the next day and took her in, where she was put on a drip and would have nurses to ensure she takes her meds.
I drove Pumla home afterward. She was at the training I led last week, and has gone on visits like this one with me. I have interacted with her on a number of occassions, and know her as well as I do anyone at JL Zwane who is not on staff. I asked her whether she had ever wanted to give up like Portia seems to have done. She said, "Oh yes. When I was first diagnosed I had already had the disease a long time. Then I started getting sick. And weak. I just decided 'I am going to die.' I was ready to give up. But friends encouraged me, I took my ARVs and now my CD4 count [what Americans call T-cells] is very high." Pumla looks great now, and it's hard to believe that she was so sick only about a year ago. There are several people in the support group who, like Pumla, should be on promotional materials for ARVs. Some people have had the disease for 10 years, and with ARV treatment they are still more or less as healthy as the day they were diagnosed. One such woman told me that, like Magic Johnson, the HIV virus doesn't even show up in her blood-tests anymore (which doesn't mean she's cured, of course, but the disease is well under control for now).
But looks can be deceiving. Bukelwua came in yesterday afternoon, and asked how my weekend was. "Fine", I said. "And yours?" Bukelwua had had a hellish weekend. Portia is doing very badly. But what had really made the weekend terrible was the sudden death of another group member named Pumla on Sunday. She had gone out with friends on Friday, and came back with a chill. By Saturday she was shaking with cold and vomitting. Sunday she was gone. Just like that. I misunderstoond Bukelwua, and thought it was the Pumla that I knew. You can imagine my surprise when Pumla walked into the office where I was working a few minutes later! We took two other members of the support group to visit Portia at the hospital, although the security guard gave us a hard time because visiting hours were over. Bukelwua told him I was the umfundisi and we were there to give a prayer. I said that was right, and that we would only be a few minutes. The guy grudgingly let Bukelwua and I come in. The ward where Portia was staying was set up the way hospitals must have been years ago in the US, or in a military hospital, with all of the hundred patients in the same room. I wondered how many of them were there with complications of HIV. We found Portia, but she was completely knocked out and unresponsive, whether from medication or sickness I don't know. Her face looked fuller and her skin fresher, but her unresponsiveness was a bad sign. We planned to go back to visit on Thursday, but I learned today (Tuesday, contrary to the date at top) that Portia had died early this morning. Another sad casualty.
Yesterday I also paid a visit to another woman with AIDS whom I have seen many times. She is stuck in bed, and I have never seen her standing on her feet. We were just delivering clothes this time, but my first few visits to her in my early weeks here were some of the most emotional I have done. The first time I went with some women from staff, we had just heard about this woman's condition from someone in the congregation. We arrived to find her sleeping on a wet cardboard mat on the floor, one of her children also sick and sleeping under the blankets with her. Even when she is sick in bed herself the children want to crawl in with her when they fall ill. You can imagine how terrible it was to see a woman living like that. Her face was taught and thin, almost skeletal, and when she sat up you could tell that she had been a full-figured woman at one point. Now the flesh beneath her clothes drooped down weakly, like the body of a woman much older. And yet her teeth are perfect, so nice that one of the ladies with me asked whether they were false ones (I had been wondering myself, but would have felt rude to ask). We said a prayer, came back later with some food and blankets, and went back to the church.
The next Sunday, a member of Siyaya who also works on the grounds and does maintenance heard about our visit to this woman and told us there was a bedframe and mattress that had been sitting in the garage for months. Sure enough, there it was, and in great shape. We got a group together, found someone with a truck,
and drove the bed to the house. We stayed over an hour, with a big group of church ladies praying outloud giving thanks for the bed and asking God's help. It was pretty emotional, and I wished there was more I could do. I dropped a 50 rand note on the floor by her bed while no one was looking. I was asked to pray on the spot at one point, which chaplaincy experience had helped me with, although I was still a little uncomfortable given the situation. I have had lots of experiences like that since then, and we have visited this woman many times to bring food, blankets, and clothes, and giving a few rides to church to her sisters and their kids. Most important, I think is that we show up and show that we care. Chaufering is actually a pretty frequent job for me here. Shaeffer the chauffer. Her English name is Rosie, and I am really moved by the gratitude she expresses when we visit. She has been moved to tears on a number of occasions. The expectation of gratitude was not a condition of my involvement in this work here. I don't feel it is something we are owed. So this makes it especially moving when someone is so thankful, especially when what we can provide seems so small compared to the size of the problems faced by those we visit. I feel like I get far more out of the visits that I am able to give. I only wish I could do more, somehow. But, at least for this one person, what we are doing is making a positive difference, and she takes every opportunity to let us know.
1 comment:
Wow, Zack, what a tough couple of days and to be filled with so many losses of people who are becoming dear to you. I'm thinking of you, friend, and grateful for your ability to be present with people. I miss you and am praying for you and your community. I'll write soon--E
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