JP/18/AIDS

JP/18/AIDS

AIDS activists struggle with death, exhaustion

I Wayan Juniartha The Jakarta Post Denpasar, Bali

For a woman who just turned 22 this year, Nita Purnakusuma has seen a lot of death.

Working as a counselor for local HIV/AIDS NGOs, first with Yayasan Hatihati and presently with the newly established Yayasan Matahati, the dark-skinned girl is expected to assist, advise and comfort patients, mostly injecting drug users (IDUs) who have been diagnosed with HIV/AIDS. Sometimes, her job also means accompanying the dying patients during their last days.

Nita has been a counselor since 1999 and during the course of her career, she has lost about 20 clients to the merciless epidemic.

"Losing a client, a friend I should say, is always a sad experience," she said.

Quite a sad experience, indeed, particularly when the person dying is more than just a friend. That was what happened to Nita when in late 2003 her boyfriend died after a long illness.

Personal loss

The tragedy nearly devastated her. Friends recalled how the loss transformed Nita from a tough activist into a broken-hearted girl in a single night.

"There is no word in this world to describe the feeling -- the abyss of sadness -- of watching his body being lowered into the earth and buried," she said.

Her eyes turn watery and she speaks in low tones about the event, an obvious sign of a wound that has not yet completely healed.

A few months after her boyfriend's death, on May 2004, another horrible event took place when the epidemic decimated virtually an entire family. The father, the mother, who was in her first trimester of pregnancy, and their three-year-old daughter all died of AIDS-related diseases in the same month. Only the eldest child, an eight-year-old girl, was spared by the epidemic. Both the father and mother were Nita's clients.

"We tried our best to save the three-year-old daughter. We did not have enough money back then so we contacted all our friends, asking them for money to pay for the girl's treatment and care," she said.

A mother in Jakarta, Hanny Basuli, canceled her daughter's birthday party and sent the money instead to the activists. The generous contribution sustained the little girl through her last days on earth.

"It was one of the worst moments of my life, watching the epidemic wiping out this family, the father first, then the daughter and finally the mother with the unborn baby. It truly gave me a new perspective on how merciless and arbitrary the epidemic and death can be," Nita told.

Such tragic deaths not only burden the activists with prolonged sadness, but in many cases also engulf them with a paralyzing sense of despair and guilt.

"I was really upset and disturbed because it ended like that. After all the things we had done, death had still managed to steal them from me. To some extent, it must be because I did not do enough to help and guide them," Nita said, at which point she fell into a long silence.

The other activists, particularly those who are also living with HIV/AIDS, these deaths hit them harder, haunting them with a foreboding sense of their own inescapable end.

"Every time a friend dies, I always feel that soon I will face a similar fate. I always try to distance myself from my clients who are hospitalized. First, because I do not have the heart to watch them suffer. Second, because I am afraid that one day I might end up like them," a former IDU and HIV-positive counselor said.

Sharing needles ...

The 26-year-old man grew up on an Army base in Denpasar where injecting drugs was a common rite of passage and heroin was as available as a can of Coke.

Rio and his older brother, who are both former IDUs turned passionate HIV/AIDS activists, were infected through their risky habit of sharing needles. This is a mode of transmission that currently is responsible for almost 50 percent of all new infections in Bali.

Of Rio's 35 HIV/AIDS clients, 10 have died this year alone, mostly because of tuberculosis, the most common opportunistic infection suffered by people living with HIV/AIDS (PLWHA) in Bali.

Novian Haryawan of Yayasan Bali+ and Franky Richard Demitrius of Yayasan Bali Nurani said the deaths of several friends pushed them to work even harder.

"With anti-retroviral (ARV) treatments now available free of charge at the Sanglah Central Hospital and Yayasan Kerthi Praja, there is a better chance for PLWHA to maintain and improve the level of their health, thus prolonging their lives. Persuading as many PLWHA as possible to join ARV treatment is my top priority right now," Novian said.

Five of Novian's clients have died this year from tuberculosis and pneumonia.

Dealing with burnout

The deaths of their patients is not the only thing that HIV/AIDS activists have to deal with. Physical and psychological exhaustion are common among the activists, particularly the counselors and outreach workers.

To a large extent, these problems are caused by the fact that one counselor must provide services to an average of 40 clients. For example, Novian Haryawan currently has 64 clients and Rae Noldy and Eddy Suryawan of Yayasan Hatihati have 65 and 40 clients, respectively.

"Bali has about 50 qualified counselor but the number of active counselors is less than half of that," Noldy said.

Because many of their clients are IDUs and sex workers, the counselors are often forced to work long, odd hours.

"My wife repeatedly yells at me for working long after the office has closed," Noldy said.

These problems can have severe health consequences, particularly for those activists who are also living with HIV/AIDS.

Careful time management

"I know a counselor whose CD4 count dropped significantly due to exhaustion," Noldy said.

A senior counselor, Christian Supriyadi of Bali+, deals with this by carefully managing his time.

"I tell my clients that I am available only during the office's work hours and not after that. I turn off my cellular phone at night. I have also appointed another counselor to act as my substitute when I am not available.

"I have to do this, otherwise I will die of exhaustion," he said.

He recalled how in his early years as a counselor he suffered physical and psychological burnout because he was handling every aspect of his clients' problems.

"Initially, we always thought we could attend to all their needs, from outreach and referral to accompanying them during their hospital stays.

"We get wiser by the year, though. Now we delegate some of the tasks to other activists, such as outreach workers and the buddies," Noldy said.

However, for several activists solutions such as time management and sharing the workload are not options.

"Most of our clients are also our friends, people who grew up together with us, so it is quite difficult, if not impossible, for us to turn them down when they come to us for help, even at the oddest hours. I tried those solutions once, tried to distance myself, but I just did not have the heart to do it, " Nita said.

Also, the clients, particularly the IDUs and sex workers, are very selective about who they will trust.

"Once they trust a certain counselor they tend to stick with that counselor and refuse to seek help from any other counselor," she said.

In this kind of environment, where the activists are expected to be a constant source of support and comfort, it is natural that once in a while they feel a strange sense of desolation.

"Once, I drove aimlessly around on my motorbike with my eyes full of tears. I felt lonely. We help a lot of people but why, when we need help, there isn't anybody there for us. That's how I felt at that moment," Noldy said.

Continuing the battle

Despite the passing away of many good friends, the physical and psychological fatigue, the activists are all agreed that they will continue the battle the epidemic.

"We owe it to those who have gone before us. This battle has entered a new level. It is now a personal fight for each of us. We have lost several good people and we are determined not to let another friend fall," the head of Yayasan Matahati, Yacintha Egamadona, stressed.

She lost her best friend and mentor a couple years ago. The memory of him still brings tears to her eyes today.

To these activists, the deaths are not a statistic but an indescribable loss, a personal pain that steels their will for the ongoing struggle against the epidemic, the one struggle they cannot afford to lose.