With hope but no money, you die with hope

Finally I can describe my project, now that I've been working for a few days. As I said before, you never know what to expect here until it actually happens. I'm interviewing people (90% women) who have HIV or AIDS to assess their needs and identify common problems. This will help the project make more specific requests for assistance, which usually increases the odds of getting funding.

I work with a translator named Ali. On the typical day, Ali picks me up around 9am and we go to meet Flora, the founder of this project whom I mentioned in a previous post. She is about 10 minutes away by daladala (the local bus). The daladala is a modified cargo van that they manage to fill with up to 21 people, or at least that is the most I have seen so far. It costs 200 shillings, which is about 17 cents. When I get on, everyone looks at me for a minute. Ali tells me, "they're just surprised because they've never seen mzungu (white person) on the daladala." This is a recurring theme where I'm working. When I first heard people say mzungu I though it was something bad, but they tell me it isn't a derogatory term. People typically say hello (habari or jambo) to me as I walk down the street, so I do feel welcome. I don't like being a celebrity though.

After a 10-minute ride, we meet up with Flora and get on another daladala to whatever neighborhood we're working in that day. On my first day, and again yesterday, we went to what has to be one of the poorest neighborhoods in Arusha. As I walk down the street, people actually stop what they're doing to look at me. Ali tells me, "They've never seen mzungu on this street before. They're just surprised." We stop at a local market to buy one kilo of sugar and six bars of soap for each person I will meet that day. This costs me 1800 shillings per person (about $1.50). These are items most of the people we meet can never afford to buy for themselves. In this neighborhood we have to meet people outside of a church because their homes are too small to sit in, and they likely do not have chairs anyway. I'm told the rooms are about 8 by 8 feet and the rent ranges from 5-7000 shillings per month ($4-6). Most struggle to pay the rent and one woman I met lives with six other family members in that tiny space. The income in this area is well below $1 per day. Most of the people here can only afford ugali, a dish made from corn flour that tastes like rice. Some get two meals per day, others just one. I actually like ugali, but I can't image anyone living off it.

Most of the women I have met with are widows. Almost all have children who have HIV or have already died of AIDS. All of this is heartbreaking, but that is probably the toughest thign to see. The project founder, Flora, showed me a picture of her son just before he died of AIDS around age 9. That is an image that will never leave me. She also lost a daughter to AIDS around age 5. Somehow she has survived for 14 years with HIV, without any medication until the last two years.

Enough of the bad. I have also seen some very uplifting things. One thing I just found out about that really surprised me is that ARV meds are provided by the government for free to anyone with HIV. HIV testing is also free, although many avoid it out of fear. The free drugs have had a huge impact on the health of HIV victims. Unfortunately, other diseases are not covered, so people suffer for long periods of time with malaria, yellow fever, TB, and other illnesses. The drugs also don't work very well without adequate nutrition, which few can afford. Still, I'm not working with the late-stage AIDS victims I was expecting to meet. Some show physical symptoms of the illness, but not most.

Despite all of this adversity, the women I have met are extremely resilient. I was actually told by a 39-year-old woman with HIV, whose husband died of AIDS in 1994 and infected her after cheating, "I was sad at first, but not anymore because everyone has problems." She has already outlived her husband, far outlived expectations, and seen her daughter reach adulthood, so she just looks at the rest of her life as a gift. That was one of those moments where every complaint I have ever made felt ridiculous in hindsight.

Flora is a big reason people are able to have hope despite having little else. She is completely open and unashamed about being HIV positive. She has been very open about it since she found out in the mid 90's, when there was much more stigma surrounding HIV. She is probably the strongest person I have ever met, and very positive. But she is quick to remind me that "with hope but no money, you die with hope." This project is grass-roots, run and primarily financed by poor women with HIV. They barely have the funds to keep things going with their 80 members, even though they rarely provide anything material. The group almost collapsed a year ago when several senior members died in a short timespan. Unfortunately everyone asks for money, which I can't help them with beyond the small gifts I provide. I want to send them some money when I get home. We'll see how much I can raise.

Saturday I will also get to do some counseling with one of the women I met who is not as hopeful as the rest. When I talked to her, she looked as if she has absolutely given up. I've never seen anything like it, even when working with people who are suicidal. I asked Flora to be involved as well. Hopefully we can do something for her.