Yesterday was a difficult but very rewarding day spent with People Living with HIV/AIDS (the Indonesian acronym for which is "ODHA"). I spent much of the day making rounds with Ade, a member of the GC staff whose main job is care and support for ODHA. Ade is a waria (male to female transgender) who's worked with GC for 8 years. Bill and I spent time with her in Australia in 2001 at the Asia-Pacific AIDS conference that year, and when Bill and I were here in 2000 we hung out with her a lot.
So yesterday she had a schedule full of visits to ODHA and invited me to come along - she wanted my help with a couple folks. First we went and visited someone I'll call "Sam." I blogged a bit about Sam last month - I had visited his house with Ade. Sam's living with AIDS and also hepatitis C and TB. His mother is a widow and is working so hard to help take care of him. He's got several siblings and a couple live nearby and are helping out too.
When I saw Sam last month, he was very thin and having some other problems too, particularly nausea. The last couple days his mother started calling Ade and asking her to come over because he'd stopped eating due to the nausea and was getting very thin and weak. But he was resisting going to the hospital; he'd slapped his mother in anger the night before. She was crying on the phone. So we got there and Sam's mom led us to the room where he was lying on the bed. He was clearly having difficulty breathing and the whites of his eyes were yellow from the hepatitis. He was extremely thin, staring at the ceiling. We sat down on the floor and started talking to him. Ade is a very experienced counselor and was just amazing. We talked to him about his symptoms and asked him why he didn't want to go to the hospital. He said he didn't want to make things hard for his mother. We talked about how him staying here not eating was also making things hard for his mother. Ade talked to him about not giving up, about how some of his symptoms were actually getting better (he wasn't coughing any more) so he needed to regain his strength, that's what would make his mother happy too. He started crying a bit. We kept talking and after 15 minutes or so Ade said "so if Tom and I come with you to the hospital, will you come?" He said yes. We told his mom and the 2 siblings who were there and they started making preparations. He tried to eat a bit - his mom brought up some rice and broth, and he took some pills - but after about 1 minute he started vomiting and it all came back up. It was hard to watch, someone so thin vomiting.
Eventually his insides calmed down and his mother got him dressed and we got him into a taxi. He can still walk, but just barely. We got to the hospital - a gigantic, chaotic place - and here again Ade was so useful, because everyone there knows her and she knows all the check-in procedures. It can sometimes take 2-3 hours to get checked in, but with Ade's help we had Sam checked in in just 15 minutes. He's going to get an IV so he can get some nutrition back in him and hopefully that will help with everything.
Once we were satisfied everything was in order with Sam, we went to the AIDS ward to check up on a couple folks we'd visited before. One of them was in very bad shape - nearly in a coma. He was sleeping and very, very thin, so we couldn't talk to him. Another person we'd met before was doing better, so we chatted with him and his mother - he was happy to see me again. There were 6 other folks in the room - all men - and each one had a person or two there helping take care of him, in every case a woman - wives, mothers, sisters. Next to us was a wife who talked to us in frustration about her husband - she was sitting at the foot of the bed and he was laying there, turning his head away from us. "He's angry because he thinks this is a death sentence." We started talking about how it wasn't a death sentence, that there is free antiretroviral therapy and other medicines available even in Indonesia, and slowly he turned his head back to us - wouldn't talk to us yet, but was clearly interested. We chatted with a couple other folks too - I did some impromptu "HIV 101" teaching. When we were getting ready to go, Ade was double-checking that our person had the right cellphone number for her, and several of the women taking care of other folks in the room pulled out their cellphones and asked for Ade's number too. It was touching to see how badly people wanted an advocate, someone to help them understand what was going on. And sad to see how few people there are like Ade - too few NGOs or government agencies are doing this kind of on-the-ground advocacy. So much money wasted on meaningless billboards rather than this kind of work.
After leaving the hospital, we went to the home of another ODHA, "Ray." Ade wanted me to come here because the family wasn't believing Ade's explanations about AIDS and they were afraid to wash Ray's clothes, share drinking cups, etc. So I came along and met Ray, his mother, and a couple other family members. Ray had apparently been in very bad shape a few months ago - still weak but really improving due to the medication. I explained to the mother about how HIV can only be transmitted inside blood or semen, that there wasn't a single case of transmission due to glasses and plates, or clothing, or even kissing. She said "sometimes my grandkids want to sleep next to Ray, but I am afraid." I said it was fine and a good thing for the grandkids to sleep next to Ray, because ODHAs need support and love, and when I said this Ray started crying. But the mother clearly really cared - she just needed reassurance.
Later in the evening, I spent time back at the hotel where the training for the HIV+ women was taking place. It was their last night in the hotel so I spent the night there - GC got a free room from the hotel. It was interesting talking into the night with these women about their futures. It's hard - they are trying to support each other, but several of them who should go on antiretrovirals are afraid to do so because they worry if there are side effects, no one will be there to take care of their kids. In several cases they are living alone, or their husbands have died and the in-laws are not interested in supporting them anymore and their own families live far away. But if they don't take the meds, then they will get more and more HIV-related diseases, which will make it hard for them to take care of their kids too. And most of these women are living on about $25 a month, which is quite poor even in Indonesian terms. These structural dilemmas are so hard - people like Ade at GC will do all they can, but they can't be there 24 hours a day and they are responsible for serving many ODHAs, not just one. Thinking through the relationship between these structural issues and everyday life decisions will definitely be part of what I write about in relations to this research.