Sijali's Story

Sijali is a beautiful 41 year old woman who is living with HIV that has progressed to AIDS. I met her 3 weeks ago and have had several visits with her. She has been married 3 times and has 5 children from those relationships. All three men are still alive but she now lives at home with her mother. All her children are grown up and live in Dar es Salaam although they come and visit her. She has 3 brothers but 2 have died – one in a fight over a woman, the other from intoxication of being drunk. She says she has too many sisters to count, over 10 at least.

What struck me about Sijali was how frankly she discussed things – she lives with her mother because her mother went and took her from the husband who wasn’t taking proper care of her, she wasn’t taking her ARV medication and thus getting more sick. Once she recovered she went back to him and the same thing happened again, only this time she got TB, a respiratory infection. She is back home with the mother but weakened significantly by the dual medications of ARV and TB – so much so that even trying to eat is strenuous. The mother takes care of her but one eye is burned shut, so she only sees through one eye. Additionally, because Sijali is immobile she’s acquired a fungus on her feet and neck that have caused the feet in particular to swell, the skin stretching across bumpy swollen lumps on both feet.

Charles and I stayed with her a while, hearing her story, and also explaining to her who I am and why I came to see her. We checked her CD4 count and she’s doing okay and hopefully it will go up as she continues to take her medication. The hospital is changing her medication to a different ARV so that will complement the TB medication and not weaken her so badly. We gave her an ointment for the fungus and next week I will go back with body oil to massage the feet and hopefully keep the skin from tearing – if the skin tears it may become infected and since she has progressed to AIDS even a minor infection may cause her to die.

My last visit with Sijali we talked more – she says she wants to get better and doesn’t want to live in pain. She has improved in terms of mobility, once a week she goes to the market. It still takes her time – as much as 5 minutes to stand then walk across the room. We laughed as I explained through Charles what an airplane is and how it takes so long to get back to America. We talked to her mother about Barack Obama – she cannot believe he has black skin. Once more, she can’t believe mzungu (white people) voted for him! I think she was encouraged though, to hear me talk about how he loves the people of the world and America.

It is sad at times but I am glad I’m getting the experience of working with people like Sijali and sharing their stories with all of you.

Return to Halfani's Grandmother

I returned last week to Halfani’s grandmother to present her with some donations from my family. Since she is the sole provider for Halfani (and he has HIV) she never gets anything for herself. I gave her two solid longer sleeved shirts for her to wear with her congas (skirts). Previously she wore the only two congas she had – one around her top and one around her waist – but the one on the top had no straps or elastic so had trouble staying up. So she was embarrassed to leave the house as she could not cover herself properly. Now, she has two shirts that she can wear with the congas and she can also wash them properly when she isn’t wearing them.

It was an amazing feeling to give someone something who has so little and yet even the gesture seems too small – but she was so appreciative, so grateful. Charles told me – “She says she will never be able to thank you enough, she will never forget how generous you were.” As part of giving the donation we both put our hands on the shirts, raised them above our heads, then she put on the shirt. That ceremony symbolizes the act of giving, acknowledgment that the gifts are now hers, and in the end we are friends and we hug.

Many thanks to my family for their unconditional support.

Picture: Me and Halfani’s grandmother, in one of her new shirts!

Halfani's Story

Halfani is a little boy who was born with HIV. Both of his parents died from AIDS and he now lives under the care of his grandmother (his mother’s mother). He is 6 years old and bright and charismatic with a beautiful smile. The grandmother is old and sick, it is hard for her to work. At her age after years of hard labor traditionally she would be taken care of by her children but all her children have died. Halfani, her one grandchild, is now in her care so she works hard and raises him on her own.

The house they live in is a very hard living situation. It is one room barely big enough for a twin size bed. A dirty mosquito net ridden with holes hangs above the bed and cooking pots line one of the walls. Outside there is a porch which serves as a makeshift living room, one torn up couch and a chair that’s only remnants are the frame and springs line the wall. The grandmother has only scraps of congas so she is often pulling them up to cover her chest.

We have brought the grandmother a mosquito net and we are going to help her clean this one. Additionally, we are going to bring her shirts so she will be covered and then can wear the congas as skirts. The boy we bring him little things like food – he gets additional care from a center in town, and he goes to primary school. Mostly Charles checks to make sure the grandmother is remembering to give the boy his medication. She forgets many times, and this is not good because if medication is not consistent it’s not effective.

Halfani is a sweet boy and proof to me that with the right care, HIV does not have to be a death sentence. He is living a life where he goes to school and can have a future. All people with HIV should be living lives of dignity and meaning.

Picture: Halfani at the entrance to his house

About My Afternoon Placement

In the afternoons I am back to volunteering at UKUN, a local NGO specializing in HIV/AIDS patient home care. UKUN is run by Charles, a local Bagamoyo man fluent in Swahili and English. The organization focuses on outreach to people with HIV in the community and seeing that they are taking medication, evaluating if they are receiving proper nutrition, and providing services and assistance when possible.

Charles is a fantastic person who truly cares about people with HIV and vulnerable children who may have parents with HIV. My work with him in the afternoon usually starts around 2:00 and we ride his motorcycle around town making visits to homes UKUN has identified. Charles is the project manager of UKUN and the organization receives funding indirectly from USAID through Tunajali, a regional NGO.

I will be starting to post stories about the people I’m encountering on these visits, as well as photos. I want to share their stories because each one is so unique but reflects broader social and cultural problems in Bagamoyo and Tanzania. I find these people to be beautiful and surprisingly content and at peace with their situations. What help is provided they appreciate immensely.

Picture: Charles during one of our home visits

My little kids are little people!

I really have gotten the impression from my kids here in Africa that they are like little adults – forced to grow up so fast. Kids in Bagamoyo – and Tanzania – walk sometimes miles to school – alone. When I was 4 years old I don’t think I played outside alone, much less walked miles to school by myself!

One of my students, Nashfat, had been absent at school for about a month. Thursday she came with her mom and her mom was explaining why. Apparently her baby teeth aren’t falling out but her other teeth are growing in anyway – so she’s had several removed. No novacaine and cotton gauze in her mouth. It just broke my heart because she was so tough – not crying or anything. But when I scooped her up in my arms she just laid her little head down on my shoulder and lightly clutched my shirt. I cannot even express the amount of love I felt at that moment for my little Nashfat! I just adore these kids they are the light in my life.

Today on my UKUN home visits I happened to pass 4 of my kids! I hear them shout “Dana” (but it sounds like DEENA) and they come running up to me and Charles on the motorcycle! Nashfat was one of them and she ran so fast and just lept up into my arms! I also saw Ramadhan, Abdul, and Haridi today. A lot of my kids leave in the areas most affected by HIV and AIDS so it’s not surprising that I saw them – I guess I should expect that to happen more and more!

So my life is back to normal – I get to Anglican daycare around 7:45am and I stay till noon. I have lunch at CCS then I do UKUN home visits from 2:00-5:00. Then dinner at CCS, maybe internet and to a bar for a drink. I bike to Anglican and UKUN which is great, I feel part of the community and I really feel like I live here. Thanks everyone for the support of my decision to stay a few more weeks! I really feel like I’m making a difference!

Picture: Me and little Nashfat!

HIV/AIDS Presentations

Nick and I had our first round of HIV/AIDS presentations at secondary schools. They were very successful but very different from the kind of presentation you’d expect.

We had a two-prong approach: medical and social/cultural. Nick let the medical presentation and I led the social/cultural presentation. Nick explained how viruses work, how HIV works differently from any other virus, and answered questions about the science of how the disease spreads and what can be done to slow its effects. Particularly useful were drawings on the chalkboard that he used to illustrate how HIV is different from other viruses – drawing antibodies like a variety of puzzle pieces (regular viruses have just one puzzle piece). This seemed to translate well to the students.

I led the social/cultural discussion about the challenges that Tanzanians face in terms of prevention, diagnosis, treatment and loss. We discussed how it is taboo to discuss sexual behavior yet many young people are sexually active. Without the proper education, they don’t know why they should protect themselves. We talked about how guys in particular don’t want to use protection and the HIV/AIDS infection rate is 56% female, 44% male. Without telling them what to do, I led a discussion about how diagnosis is important but acknowledged it can be scary. We discussed how not getting tested won’t make it go away, and the advantages to knowing early can prolong your life 5-10 years. They talked about the negative stigma for HIV/AIDS people and asked how it was in the United States. They had many questions.

We also talked about the confusion surrounding death – Nick explained that people don’t die from HIV but rather from flu, diarrhea, pneumonia, malaria – other viruses that your body, crippled from HIV, cannot fight. I used an analogy of a fistfight and said for them to imagine they are fighting a disease. What HIV does is it ties your hands behind your back – makes it a lot harder to fight. This analogy seemed helpful.

Of course they are secondary students so they still got giggly when we talked about sex and protection and things like this. Overall they were extremely engaged in the discussion and eager to understand the disease better. The goal was to empower them, not dictate, and I believe that was achieved. We have more presentations coming up, so wish us luck!

Three Week Update

It’s been three full weeks that I’ve been Tanzania. In so many ways I feel like it has FLOWN by! I’m still not homesick, other than for people, but I am missing certain things – ice cream (it is SO hot here!), sushi, Mexican food! I also miss being able to talk to my friends and family on the phone. And I miss the gym!

I’ve learned all my kids’ names at this point. We have fun on Fridays – that’s when there is free time. They sing and dance and they are only 4 years old – they’re so little! They have a version of duck duck goose – except they say paca paca simba which is chicken, chicken, lion! They get so into it I laugh hysterically.

Monday I start my afternoon placement. My three weeks of cultural immersion activities are over, now I have more free time and I’ve opted to work for a local NGO. It’s called “UKUN” – the abbreviation is in Swahili – and it is an NGO focused on HIV/AIDS prevention, social awareness, and home-based treatment and care. Specifically, I will be going on home visits to AIDS patients with the head of the NGO and taking notes on what the AIDS patients require – often basic things like food and clothes.

Part of the problem is that HIV/AIDS individuals may receive antiretroviral drugs but may not have food, thus are taking the drugs on an empty stomach, leaving them weak and physically strained, potentially malnourished. UKUN looks to remedy some of these areas but is itself short on funding and resources. I have no doubt that the home visits will be difficult to experience but will give me valuable insight and a deeper understanding as to what it means to suffer from HIV/AIDS in a developing country.

Other work I hope to do relates to links between HIV/AIDS and nutrition. As I said above, they are intrinsically connected with overlapping causes and effects. Poor nutrition allows HIV/AIDS to onset much quicker, resulting in inability to work, provide for family members, and remain a functioning member of society. The social stigma is apparent as well – individuals with HIV/AIDS are viewed as promiscuous sexually, which in an already extremely conservative society, is looked down upon. Accordingly, higher levels of nutrition allow individuals with HIV/AIDS to continue working, taking antiretroviral drugs to delay the onset of full-blown AIDS, and provide for their families.

The related areas include poverty and education – being here has opened my eyes to how overlapping all these theoretically separate issues are – and how efforts by organizations like UKUN help to remedy multiple issues at once. Onset of HIV/AIDS traps people in poverty, infected parents unable to care for their children require kids to drop out of school to take care of younger siblings, take care of the home, and try to make money and get food. It’s a disastrous cycle, with no one cause or apparent solution. But I’m interested in it, in learning more, in increasing coordination of aid efforts between these areas.

I start Monday…. So wish me luck!