People living with HIV face bitter life with big hearts

Nethy Dharma Somba, The Jakarta Post, Jayapura

There is nothing special about the small, yellow-painted house measuring seven-by-twenty meters compared to the other houses in Kampung Cina, Abepura, Jayapura. However, it becomes more special after you find out who lives in it.

Besides being the house where Sister Siti Soltief lives, it is also a shelter for people living with HIV/AIDS.

The house has been a HIV/AIDS shelter since 2002, and a home for five women, all suffering from HIV/AIDS.

"I don't know where else I would go if Sister Siti hadn't taken me in," said one of them, Susi (not her real name), 32, who has been staying there since 2003.

Susi and her fellow patients wake up every day in the morning, have breakfast at 6:30 a.m., take their medicine at 7:00 a.m., take their antiretroviral (ARV) medicine at 8:00 a.m., have a snack at 10:00 a.m., then have lunch, take a nap, eat dinner, take the ARV medicine again at 8 p.m., and then retire to bed at 9 p.m.

The daily routine as set by Sister Siti is designed to maintain the stamina of the patients to prevent them from easily becoming infected by accompanying illnesses.

Sister Siti and her colleagues, grouped in the Jayapura Support Group (JSG), provide everything, including food, drinks, medicine, and daily necessities, while the patients cook their own meals, do laundry and shop for whatever they need.

"We use our own money and donations from good Samaritans. It's hard but it's our job to support those living with HIV/AIDS," said Robert Sihombing, a member of the JSG, a HIV/AIDS monitoring group.

There are seven members of the group, consisting of medical professionals and nutritionists, which provides advocacy services independently to 77 people living with HIV/AIDS in Jayapura city and regency. Only five of them live in the HIV/AIDS shelter in Kampung Cina.

Four of those in the shelter take ARV. Susi has been taking the medicine for the past year.

"My weight increased after taking ARV, and I no longer suffer from the cough I had since becoming infected with HIV," she said.

ARV, which must be taken throughout a person's life, can suppress the spread of the HIV virus in the body and maintain the body's resistance.

Susi is staying at the shelter with her son, Seto (not his real name), 8, who is now a third grader. Seto is free of the HIV virus.

Susi contracted the virus from her husband, who died in 2002. She was then ostracized by her husband's family, who accused her of killing her husband by witchcraft.

After that, she was banished by the family and forbidden to see or take care of her only child. "They couldn't accept that my husband had died of HIV/AIDS," she said.

In 2002, Susi undertook a HIV/AIDS test and the results were positive. In a state of confusion, she returned to Lombok, West Nusa Tenggara, but could not stand being separated from her son and returned to Jayapura in 2003.

Susi did not tell her parents about her condition while in Lombok. "I need time to tell them. I'm afraid they'll be shocked if they find out about my condition," she said.

Upon returning to Jayapura, she met Sister Siti and eventually decided to move into the shelter. Every time there is a seminar or counseling on HIV/AIDS, she and her friend Puti (not her real name) often show up to relate how they were first infected by the virus.

Susi's struggle to take care of her own child was finally fulfilled, thanks to help from JSG. Her husband's family were also ashamed to have a family member whose mother was living with HIV/AIDS. Susi has been living together with her only child for a year now.

"My husband's family willingly let me take charge of Seto, and doesn't want to know about us anymore. There's been no word from them ever since," she said.

To see Seto become a success in life is Susi dreams. "That is what makes me stay strong and survive, even though our presence is not accepted by everyone," she said.

Susi first met her husband, a native of Sarmi, Papua, while working in a timber company in Lereh, Jayapura regency. She was then living with her parents, who had migrated to Papua from Lombok. In 1996, they got married, while her parents returned to Lombok as they could no longer cope with living in Papua.

Susi said that she had never felt uncomfortable or ashamed of her illness, but was depressed that many people still saw those with HIV/AIDS as being frightening.

The relationship between people with HIV/AIDS and the shelter's neighbors is normal. "We often exchange food," Susi said.

She hopes that her openness to the public about her status as a person living with HIV/AIDS will help open their hearts so that they accept people with HIV/AIDS as they are.

"Nobody wants to have HIV/AIDS. It's only fate that has left us the way we are now," Susi said.