We apologize for the delay! We’ve been without internet until yesterday We have many posts to give you!
This past Wednesday, we went into the field to do our first day of home visits. Julius, a local health worker, helped direct our car deep into the villages where many of the women who are members of GWED-G’s program for HIV positive mothers live. We got out of the car and carried chairs past homes and through maize fields to a giant tree where school children of all ages were playing and being mischievous, just having been dismissed from school.
We sat in the shade of this expansive tree and listened as these women took turns, often with small children on their laps, telling us their stories. We listened as they told us what they did and how they felt when they found out their HIV statues – who they turned to and who turned them away, which options they had and which they were denied. We listened as they expressed their fears about their present and their worries for the future, but we also listened as they spoke of the light that can be found amidst the dark, the hope that permeates the social and physical difficulties that HIV positive mothers must face on a daily basis. One story I found to be particularly moving was from a woman named Aroyo Janet. She is a 23 years old mother of four, currently pregnant with her fifth child. The baby she holds in her lap in this photo is her 4th child, and though she looked much smaller, the she’s four years old – she was born HIV positive and has been on antiretroviral drugs (ARVs) for years now. Janet’s life has been excruciatingly difficult in ways I could not fathom but her story was not without its triumphs. According to her testimony, Janet’s life was not only turned around, but literally saved, by one man named Ronald.
Ronald is a village health team worker (VHT) in the Amuru district of Northern Uganda, and lives in Pagak Parish where Janet is from. He is HIV positive himself and uses his status and his experiences to reach out to community members, providing an example in his actions, and support for those battling to accept their statuses or those reluctant to abandon the stigma that binds itself to HIV.
(For more information on VHTs go to the bottom of the post!)
We sat down with Janet and asked her to describe her experience finding out her status. This is her story (warning, it may be difficult to read):
When Janet found out her status, she went into shock and was admitted to a nearby hospital. She, like many of the women we spoke to, saw the diagnosis as a hopeless death sentence – many considered suicide, not seeking to prolong what they considered the inevitable. When Janet was released, she tried every possible means of procuring medicines that in combination could kill her – she didn’t see any future for herself but pain and darkness. Ronald saw the state that Janet was in and asked her to his home. He removed all the medication from Janet’s home and spent the entire night talking to Janet and counseling her. In the morning, Janet asked Ronald for medication, but knowing she would only attempt to harm herself, he took her instead to a nearby health center where he brought in a team of health workers to begin counseling and talking with her at length. Upon her return to her home, Ronald had Janet closely monitored by her neighbors and kept her medicines in his home, bringing them to her when she needed to take them, and making sure she was keeping with her ARV regimen. But Janet’s disposition did not change. She did not believe the ARVs were working and saw no light in her future. So Ronald tried something else. On every 28th of the month, the health center of Labongogali dispenses ARVs to community members living positive. Janet describes the experience:
“Ronald took me to the health center on this day and showed me the hundreds of people who were living positive. They were an example to me. Ronald talked to me, telling me, ‘See, all of these people are living positive, and some of them are even younger than you. If you stay with us, you will not be alone.’ So Ronald continued counseling me and talking to me, and eventually I started to accept my status.”
Unfortunately, at this point, since she had not been taking care of herself and taking her medication well, Janet’s fourth child was born HIV positive. But thanks to the counseling and support that Ronald gave her, she was able to recognize that hope remains and that her current pregnancy does not have to be the same. She is now enrolled in GWED-G’s program for HIV positive mothers which is providing her with the tools and education necessary to deliver a healthy baby.
Janet is an incredible woman with undeniable inner strength that has enabled the success of her recovery from despair and sickness. But the influence of Ronald on her personal journey cannot be denied. This is just one example from one woman that we have interviewed. Many other women told similar stories of owing their lives to the dedication of their village VHTs. Their impact on their communities is undeniably crucial, but largely, VHTs’ work goes unrewarded and unrecognized by all but those they serve, and a select few NGOs such as GWED-G. Part of our project with GWED-G is dedicated to allocating funds to VHTs – providing incentives such as soap and salt to offer small thanks for the work they do. But the thanks is much smaller than deserved and much more should to be done to assure that VHTs can do the most good for their communities.
(Background on VHTs):
VHTs are under government purview, but the government fails to support them or even, it seems, fully recognize the necessity of their work in the villages they serve. VHTs are recruited and initially trained by the government, but the training is minimal and rarely followed up with refresher training sessions. The government does not provide stipends or incentives for the hardworking staff of VHTs who volunteer their time and talent to helping the multitudes of Northern Ugandans living in dispersed rural areas. These men and women go out into villages to bring health information, education, referrals, counseling and support to communities that are far removed from health centers and which are largely inaccessible by anything larger than a bicycle. HIV positive mothers in areas such as these, thus, are hard-pressed to find the time, let alone the physical strength required to walk the often day-long journey it takes to reach health centers. On top of it all, women, HIV positive or not, are required to have their husbands present at government owned health centers in order to receive care. Thus, many women do not receive the proper antenatal care (ANC) necessary to deliver a healthy baby – a situation made all the more dangerous when the woman in question is HIV positive and is not able to access the information and tools necessary to deliver a baby free of HIV. Enter VHTs. VHTs are able to bring information and sensitization campaigns to the community members directly. With the help of a hospital staff member, VHTs can bring HIV testing and education on antenatal care to women, bypassing the rules mandating husband presence, and providing care and education to people who might not have the ability or time to acquire such care at health centers. But the support that VHTs provide is much deeper than what can be read on paper. In order to understand, it’s important to hear from the women and men, like Janet, whose lives have been touched by such committed and kind community volunteers.
Sorry for the long post!
GROW team out!