Sunday, November 25, 2007

Lindiwe

I met Lindiwe late one morning in the Home-Based Caregiver’s home. She was sitting on a Zulu mat on the floor, covered in a blanket to keep the winter chill away. She was clearly sick, and had spoken with the home based caregiver for assistance. The symptoms of TB were evident and upon our advice, 34 year old Lindiwe, the mother of three, went to the clinic to get the sputum bottles to check for tuberculosis and to get an HIV test. As it became obvious that her finances were keeping her from fetching her TB results and doing the two day ARV adherence training to treat her HIV, we assisted her with the transport to get to the clinic. As predicted, her results came back positive for TB, and after time we found her CD4 count to be 142 – low enough for her to need quick ARV access, but this wasn’t to be.

The June public strikes interrupted Lindiwe’s access to treatment, starting just as she most needed the ARVs.

As the strikes dragged on into their final days, Lindiwe developed meningitis and was admitted into the hospital. At that point, the meningitis was too strong and her immune system to weak to start the ARVs. She never made it out of the hospital, leaving her two daughters, aged 14 and 20, without their mother, staying alone without any income. The last time I saw her, she asked me to look out for her girls. Fortunately, their father is working in Durban and thus can provide maintenance to care for the younger, schooling daughter. Accessing this support, however, has not been expedient: for three months, the girls got food vouchers from the social workers. Those three months have just come to an end, and their case is still no closer to being resolved. I’ll be bringing them food again to ensure they don’t go hungry, while urging the social workers to work through their case quickly.

In case after case with HBC patients, there is the bitter-sweet heartache and joy of assisting patients sick with HIV/AIDS. For some, like Lindiwe, our assistance has left a mark of love and care while not succeeding in lengthening their life, still leaving orphaned children behind to look after. Although increasing numbers of patients are accessing life-saving treatment, Home Based Care for the sick and orphans too often go hand in hand.

The beautiful thing about working with Thembalethu is being able to be with both situations in their greatest need – to share love, care, prayers, resources and health advocacy. On the behalf of all of those whose lives we have touched, THANK YOU for making this work possible!

Monday, October 15, 2007

Not a family untouched

During a recent home visit with home-based caregivers, we spent some time overlooking this small valley with houses and homesteads in every direction, almost as far as the eye can see. Over the past couple of months, it's become clearer to me that every homestead has a story, and almost every one of these stories is interwoven with HIV/AIDS tragedy. The more that I go on home visits, supporting the home-based caregivers, the more I come to understand the reality of AIDS - not a family remains untouched. They've all lost an uncle or an aunt, a mother or a father, a child, a cousin or even a grandparent to the disease.
As I stood on the ridge that day, overlooking the various clusters of homes, I asked about the stories of each family. "That single isolated mud hut over there, who lives there? And that one house left standing with all the other buildings in various stages of decay, who is living there?" Everywhere around, AIDS and poverty go hand in hand.
  • The one house with a single mom and her three pre-teen kids without any income, the family extra vulnerable to the threat of infection and problems accessing treatment. I just met one such family, a lovely mother named Lindiwe who left two girls behind: a 20 year old and her 14 year old sister. Lindiwe fought a losing battle against HIV, tuberculosis and meningitis. The July public strikes caught her at a time when she was in desperate need of attention for the meningitis that eventually killed her before she could start the life-saving ARVs. With their mother's death, the girls were left without any income at all. We've been able to help Lindiwe's two girls access government child grant for the older one's small baby, and are working with the social workers to access child support for the younger daughter from her absent but employed father.
  • The gogo whose adult children have all died, and is left caring for seven orphaned children on less than $100 a month, who is too frail to repair the crumbling buildings all around her. Working with the 19 year old who is prepared to take on the care of her younger siblings, we've linked them up to government crisis food provision while we push for their foster care grant to be processed. Their three months of food provision are about to run out, so we will be simultaneously providing them with additional food parcels while putting pressure on the social workers to process their case.
  • A orphan-headed household run by an 19 year old girl with her 17 year old sister, and 7 and 4 year old nieces - left behind by two generations of parents and elder siblings. The recent rains are running through their second-hand tin roof, threatening to erode away two different walls of their house. They are already vulnerable in their situation, the 17 year old often running away with boys in a habit of finding a way to provide for herself, making her situation and her vulnerability to HIV all the more real. We are making the necessary repairs to the roof to keep the house up during this season. We have referred their case to the social worker's for the three month food assistance, and pushing the case through to get the orphan grant.
It's been a couple months of intense ups and downs. Realizations of the degree of need in the community, the discovery of numerous orphan-headed households who we have managed to link up to government assistance, to find out that the government's timeline for temporary assistance (three months of food parcels) isn't up to par to with the realities of their service delivery. Finding orphaned young people or widows staying alone and isolated without anyone to help them when HIV, TB, and side effects bind them to their sick bed. And yet seeing the amazing generosity and ubuntu of the community in bringing them food, fetching water from the community pump for them, bringing them firewood, washing them, and being their health advocate. Xoli and I were recently doing an inventory of all of the patients under the care of the Thembalethu Project. We have 70 patients being looked after by 30 home-based care volunteers, a huge testimony to their generosity, love and service to their neighbors in need. And yet, we have lost 26 patients over the past six months, most to a debilitating HIV related disease that could have been prevented if they had faced their HIV status earlier. And yet the number of people assisted with transport funds, immune-boosting porridge, moral support, and tender palliative care continues to increase, and those who access ARVs in time also is improving.

Last month we had a hugely successful VCT drive, bringing in HIV counselors from Estcourt Hospital to the tribal court to test and counsel willing members of the Amangwe public. Over the two days of VCT (voluntary counseling and testing), 83 people were tested for HIV including a large number of our Home-Based Caregivers. We are working with the hospital counselors to plan another HIV testing drive in the next couple of months, combating the 'small town' confidentiality breaches that suppress people's desire to get tested in the local clinic.

At our last monthly HBC support meeting last Monday, we also gave out veggie seeds (spinich, carrots, pumpkin, onions and beetroot) to all the home-based caregivers for their family veggie gardens and to share the excess with their patients and vulnerable children in their neighborhood. When on Thursday I was doing home visits with some of them, in their enthusiasm most had already planted their seeds. With the hugely positive reception, I've bought some more seeds to give to orphan headed households, and very vulnerable patients.

I feel so honored to have your support and prayers to be involved in all of these people's lives, to bring support to the HBC ladies in caring for the vulnerable in their communities. May God bless you for making this work possible!

Also check out the new prayer requests in the right column.

Thursday, August 9, 2007

The Fires

Massive veld (bush) fires combined with fierce wind that take out massive numbers of homes, an amazing and encouraging church and community response, funerals, orphan advocacy, working with government hectic… It’s been a very busy couple of weeks. In a recent conversation with my Dad, he quoted me a Chinese curse – that your life may always be interesting. Perhaps these Chinese had never been to Africa, where there’s rarely a dull moment!

A week and a half ago Friday, here in the Winterton area, in the middle of a dry winter, we had record winds. These are called the “August Winds” and typically bring in “September Rains.” The dry winter is also a time of burning – the farmers burning fire breaks to protect their farms, houses, and assets from uncontrolled fires. The Zulus burning their grazing land to increase and speed the green pastures for their cattle. The wandering skevenga (loosely defined ‘troublemaker’) walking around lighting the long, dry winter grass on fire to stay warm or watch the neighbors run around to put it out. On 27 July, however, just days before the nationwide annual August burn-ban, a stray spark from a farmer’s fire break was carried by the wind and did a HUGE amount of damage. (I was trying to send pictures, but it isn’t working currently. I’ll paste them on my blogsite soon.)

According to a local paper, over 80 families lost their homes (or huts, mostly thatched, within their homesteads), and over 400 people were affected as an out of gale-force winds blew a large fire across the Winterton area. The fire was indiscriminate, wiping out the houses of white, black and Indian alike. The fire took out the newly thatched house of two amazing doctors as the local public hospital (Emmaus) – they lost everything they owned. Three other families of farmers also lost their homes, as well as some of the hospitality industry (Villamora is now gutted, for those of you who’ve been here and know where it is) were wiped to the ground. People were lucky to escape unharmed, though a seven-month-old baby was killed and her mother still suffering in critical condition from massive burns to her face and the much of the rest of her body. Yet the bulk of the destruction was caused when the fire raged through the densely populated Khethani township just outside Winterton’s city center. Long before the fire, this was an area with massive social problems and little community spirit: filled with a random collection of people from all over, illegal immigrants from neighboring Lesotho and significant lack of community cohesion.

And yet, the church and community response was amazing encouraging – a positive step toward bridging the gap between black and white, rich and poor. As soon as the fire hit and swept through, leaving behind it a trail of smoldering destruction, the community responded with amazing generosity. While foreign volunteers (my friends Sofi, Cameron, and Andy at the fore) rushed in to pull people out of the path of the fire, the local church rallied together to gather donations, provide emergency housing, a soup kitchen, and do inventories of all the people lost in the hectic, as well as all those who lost all they owned. The generosity of the Winterton and neighboring communities was amazing. The doctor friends mentioned above have an 18 month old adopted baby girl who has never had so many clothes in her life; and all who lost their homes (mostly kitchens as they typically are thatched) have just received a full kitchen set, as well as school uniforms to get them back on their feet and their kids back in school. I’m living in my friend Sofi’s volunteer accommodation, and babysat for her two year old daughter almost non-stop through the first 48 hours of the fire as she was, and continues to be on the front lines of getting people assisted. She’s been amazing, but could use your prayers for rest and recovery now!

Otherwise, the Thembalethu project continues to grow and expand. We’ve been meeting up to three times a month with all the home-based-care volunteers; monthly meetings to check in with them and collect data about their patients, trainings and other referral-orientation type meetings with them to help them link up with resources in their community and beyond. Just today we had a Winterton pastor come in with a chaplain friend of his to do a training in trauma counseling. It ended up being a trauma/grief counseling session instead, as the carers haven’t ever had many chances to be debriefed about the many deaths of their patients that they experience in the course of their volunteer work. We hope to continue with this process, and planning spaces for them to debrief with each other about the burdens they carry seeing so many people they’ve tried to help die every month. But slowly, we’re making a difference. Sometimes it’s so few people that are surviving amidst all the calls I get to tell me about a patient who has just died. People are dying in such high numbers here, it’s hard to imagine the HIV/AIDS situation could get much worse as it’s expected to. The training was to me a very good reminder of how important it is to allow myself to grieve, to share with others the sadness, anger, frustration, guilt, and pain that I feel. This is hard, and I’d appreciate your continued prayers for me, for Xoli (with whom I’m working), and for the HBC volunteers.

But there are still beacons of hope in this sea of HIV/AIDS. I got a phone call this afternoon from Sibusisu, a HBC patient that we helped back in June to get on ARV treatment. At the time he was so sick he couldn’t walk, and had the symptoms (runny stomach and vomiting) that are the final stages for many patients. But he called me to tell me that he is very well, and has a three week contract to work on a farm about two hours from here. He told me his two young daughters are staying with his mother while he’s away (his wife passed away in February), and he promised to get them tested as well for HIV. It brings me to tears full of gratitude to know that he’s alive today because of your support. His name means blessing in Zulu, and he is a blessing to me, and blessed himself to have this new lease on life. Thank God that he’s doing well. Please pray that he’ll continue to get stronger as the ARVs continue to suppress the virus in his body, giving his immune system a chance to pick back up to normal levels.

Otherwise, we’ve been busy meeting with the Nkosi (the tribal chief), the local mayor, the social workers, the Department of Health (whose lack of planning pressurizes us to all but frantically fulfill their requests), and other NGOs. We are planning our first stab at an Amangwe-wide HIV testing and counseling drive for two days at the start of September with counselors from the Estcourt Hospital. The idea is that people are afraid to get tested by the staff at the local clinic for their lack of confidentiality, and counselors from outside the area help increase the confidentiality in an area where stigma remains rampant. We’ve also started to give out some food parcels to orphans in extremely vulnerable situations – living entirely alone, or going weeks without any food, while trying to link them to Microfinance for Youth for business opportunities and to government orphan assistance. There’s a local NGO that is starting a PMTCT (Prevention of Mother to Child Transmission of HIV/AIDS) program through the Department of Health that will employ five community volunteers to try to decrease the transmission rates to children, and try to keep the mothers alive. Although we may lose some of our best HBC volunteers to this partnering program, I will be happy to see them employed, and hopeful that many other lives will be saved through their work. I know of more than five mothers of young babies that have died in the past three months – all without an advocate and fellow HIV+ person to help them through the process. We’re checking to see if the babies have gotten the virus from their mothers – these infant tests take a long time to return. Please pray for these children.

Also please pray for the children and families affected by the uncertainty and perhaps pending closing of the local orphanage. Pray that the social workers will have wisdom to know how to do best for these kids and that their families (it appears most of them have a loving extended family) would welcome the children back with open arms. Pray that they would be expedited through the system to get the foster care assistance they need.

Monday, July 23, 2007

Home-Based Care Volunteer Profile

Ntombi Mayaba

Ntombi lives in Kwa Vala village has been caring for her sick and dying neighbors since 2005. She saw the assistance that her friend Elsie in neighboring eMandabeni was providing to the sick and orphaned, and decided to motivate her neighbors to do the same. Ntombi is now the leader of the KwaVala home-based care group, which consists of herself and two other active HBC volunteers.

Ntombi attends a Presbyterian church, and shows tremendous love for the patients that she cares for. When she was a child, she lost both of her parents at a young age, and well understands the impact that the love of neighbors and family made in caring for her after her loss. Her current HBC patients include women and men suffering from full-blown AIDS; a mother (32) on ARVs, but yet paralyzed for life from spinal tuberculosis, and orphaned children struggling after the death of a parent.

Sunday, June 17, 2007

Challenges and Prayer Requests

Hello Friends!

Things are getting very frustrating here as the public sector strike has been on for over 2 weeks now. This means that the schools, as well as clinics and hospitals and all other government offices have been closed for this time. It’s really impacting the HBC volunteers and their patients – many are suffering without being able to get medical assistance, and they can’t afford to pay to see a private doctor. People who are supposed to collect chronic medicines (for blood pressure, epilepsy, and ARVs for AIDS) are having great difficulty doing so. This could have dreadfully vast implications in the community if this strike doesn’t come to an end soon.

The Injesuthi Clinic, which normally has a queue at least 100 people long every morning, has been limited to seeing only emergency cases – and many are afraid to go in for even those cases. People are suffering greatly, and there seems to be no end in sight. AIDS-related opportunistic infections left untreated can quickly progress to fatal illnesses.

The frustration is that the public workers are being intimidated by the unions, who in term are jostling around for political power and influence. This is the biggest strike since the New South Africa came in after Apartheid in 1994. Below you’ll see links to articles on this, if you’re interested.
Public service strike disrupting HIV care in South Africa – AIDSMap News
Civil Servants' Strike Intensifies in S. Africa – Washington Post
Public worker strike disrupts South Africa – Chicago Tribune

*Please pray that both the unions and the government will come to their senses so that the country can get back to normal.

*Please pray for healing and protection for the sick suffering without any access to treatment.

Please also pray for assistance and hope for the many orphans in South Africa. I’ve heard the most disturbing stories about orphan situations throughout Amangwe in the last couple of weeks: staying alone without food or clothes to keep warm in this winter weather; staying 12 kids together with a sick granny; a 10 year old boy staying entirely alone, etc. Pray we’ll be able to find sustainable, empowering ways to support, encourage and love on these kids.

Thank God for the exciting developments within the Winterton church community to bring together and advance the work of multiple ministries, Thembalethu being just one of them. Simunye, the name of the interdenominational committee, well-represents God’s work: In Zulu it means “We are one”.

I’m very grateful for your support and prayers!

With love,
Betsy