11:58, 11:59, 12:00. Narendra* paced slowly back and forth on the rooftop of the Hospital. Any minute he expected to see a doctor climbing the steps with a report that would tell him whether his wife, Kabita*, was also HIV positive.
Narendra first discovered that he was HIV positive six years ago while he was in the army. Shocked and ashamed, he chose to hide his status from his family and disclosed the truth only to his commanding officer.
He was able to keep his secret for years until his failing health forced him to start antiretroviral therapy (ART).
12:13, 12:14, 12:15. His friend thought that sitting in the warm January sunshine would ease Narendra’s growing anxiety, but Narendra couldn’t stop checking his watch and thinking about Kabita. He was no stranger to worry.
When he first came to the AIDSLink Nepal care center last November he was overwhelmed with the burden of maintaining the secrets he had kept for years now - that he had to take medicine twice a day, every day, for the rest of his life.
During his stay he had the opportunity to sit in the monthly support group meeting and listened solemnly to stories from other people living with HIV. Encouraged and emboldened by their support, he told his own life story, confessing the mistakes he had made while working in the army and renouncing his destructive behavior.
In the days to follow, AIDSLink staff marveled at the change in Narendra. His demeanor was gentle and peaceful and he took it upon himself to lift the spirits of other care center clients.
He generously purchased fruit and meat for them, explaining that they were all equal because they were sharing the same struggles and should enjoy life together.
12:28, 12:29, 12:30. Narendra was confused. Why hadn’t a doctor or nurse come with Kabita’s results? Unbeknownst to him, an AIDSLink volunteer had picked up Kabita’s results with the intention of delivering them to Narendra himself, but had been detained by his work in the ART clinic. Narendra’s anxiety was building again, as it had when his time at the care center finished.
AIDSLink staff had urged him to tell his wife and family about his HIV status, reminding him that they might also be HIV positive and might need treatment. Narendra resisted, choosing instead to rent a cheap and unsanitary room in the city where he could live and recover alone without being a burden on his family.
Over the next month Narendra struggled with loneliness and became depressed. The dampness of his room brought on a chest infection that developed quickly into pneumonia. Narendra was admitted into the hospital and believing that he was dying asked Kabita to come to Kathmandu. Kabita was stunned by the news about HIV, but stood by her husband. Narendra began to respond well to treatment and encouraged Kabita to also get tested for HIV. Even though he knew that the results wouldn’t come for a few days, Narendra could not find anything else to talk about.
12:43, 12:44, 12:45. In the neighboring building, Kabita’s report was still in Kamal’s pocket. Narendra could barely breathe. His friend became alarmed at his short, rasping breaths and insisted on bringing him back to his bed. On the way down the stairs, Narendra stopped breathing and died.
12:58, 12:59, 1:00. Kabita found out about the death of her husband and her own HIV positive status within the same breath. Fear reminded her that her five year old daughter, Surita*, had been battling a fever for days. Could she also be HIV positive?
Kabita returned to her village to grieve the loss of her husband, risking her own health further by following Hindu funeral rituals that required her to fast. Honoring her religious traditions did not stop or even slow Kabita’s grief.
Surita’s declining health brought her back to the hospital in early February. A fever had turned into diarrhoea and severe dehydration, and Surita became too weak to move or eat. One day after testing positive for HIV, Surita died.
*Names have been changed.
Despite years of skilled work as a mechanic, Yuraj* was jobless after a massive companywide downsizing. Weighing his options, he decided to apply for a work visa overseas.
His plans were derailed when the routine medical exam revealed that he was HIV positive. Ashamed, he did not tell his family and went to a different city to work as a driver. After a few months Yuraj became ill. His relatives took him to the hospital and doctors told Yuraj that they were going to test him for HIV. He didn’t tell them that he already knew what the result would be.
When his relatives found out that Yuraj was HIV positive, they left him in the hospital and returned home. After he was discharged he spent six months trying to drink his worries away. However abusing alcohol and ignoring his doctor’s advice only brought him back to the hospital.
We first met Angel* in Zambia in August of 2012, she told us she had “that thing”. We told her about our upcoming AIDSLink Channels Of Hope (COH) facilitators’ training and began praying with her so she could attend.
The first few days of the seven-day COH training, young Angel was silent. Several people in the course told the group that they were HIV positive and shared how that has affected their life. But Angel kept her secret to herself.
Then, in front of 35 people, Angel shared publicly for the first time in her life, “I am HIV positive.”
From that point on, Angel transformed from meekness to boldness. Her whole countenance changed. For the first time in years, she could be herself.
Angel went back to her home of Zambia and a month after the course updated our AIDSLink team.
“It was hell!” one participant said when experiencing what it feels like to be poor in the poverty camp simulation that AIDSLink held in Pretoria, South Africa for a partner organisation.
In the simulation, families lived in shacks and made bags out of newspapers to sell in order to pay their landlord, for food, schooling for their child, etc. AIDSLink played the roles of the shopkeepers, landlords, development workers, pimp and human trafficker.
If the families could not make enough money to pay their landlord, they were evicted to the garbage dump. Some families never made it back out of the garbage dump and spent the entire time there.