HIV positive people tell how it is for them
By Mehru Jaffer
JAKARTA (JP): For his 17th birthday earlier this year, "Zorro" got a surprise. Not a nice one, though: he discovered he was infected with the Human Immunodeficiency Virus (HIV). It was a double tragedy for his family; his brother, a year older then, him is also HIV positive.
"I was devastated for a whole week. My dream of training to be a pilot was gone with the wind. I wanted to take a drugs overdose and die.
"My parents were paralyzed with grief. Every time my mother looked at me she burst into tears. I was sorry that I had been lying and cheating since I was 14 years old. Suddenly I was so sad and full of regret ...," the teenager told The Jakarta Post at Wisma Arjuna in Bogor, where 67 residents, including six women, are undergoing an intensive drug addiction recovery program.
Joyce Djaelani Gordon, co-director of Harapan Permata Hati Kita Foundation which runs Wisma Arjuna, warns that HIV/AIDS has reached epidemic proportions in Indonesia and that the country is not equipped to address the challenge. Joyce used to work with the problems of HIV and AIDS, but a few years ago she devoted herself to the root cause of it, which she insists is drug abuse.
Joyce explained that under the influence of drugs people are more likely to have indiscriminate sex, something which causes the spread of HIV/AIDS. Addiction costs drug abusers a lot of money, which invariably leads to crime and violence.
To wipeout drug abuse would be to wipeout all the other problems that emerge as a result of it, she said. She regretted that there remained reluctance to acknowledge the connection between HIV/AIDS and drug abuse in the country.
Very little is known here of the complex subculture of drug users and addicts. Intensive HIV/AIDS programs in Indonesia have so far concentrated on commercial sex workers. Little thought has been given to hepatitis C. Sex related problems like unwanted pregnancies, sexually transmitted diseases as well as HIV/AIDS and hepatitis C are very prevalent within the drug abusers community. Drug-related crime and violence is another rapidly increasing problem.
Zorro joined the center's drugs recovery program a few months ago. He has never had sex in his life and is HIV positive. Benjie, 24, started having sex at the age of 14 with his girlfriend, who was 15 years old at the time. He strongly suspects that he got hepatitis C, a disease that leads to cancer of the liver, because he did not use clean needles when injecting drugs. Once he spent Rp 4 million in a month on drugs and alcohol. When he ran short of money he sold his television set, CD player and anything else of value he could find in the house.
The number of drug abusers and addicts in Indonesia is estimated to be 1.5 million and continues to increase every day, especially among young people. Statistics also show 10 percent of all intravenous drug users are HIV positive, while 70 percent are inflicted with the hepatitis C virus.
To get a glimpse into the world of junkies, a study of 57 drug addicts was completed last December by residents at Wisma Arjuna. Each addict was asked to think about their personal experience of living within the drug community.
The introduction to the study summed up the addicts feelings: "Yes, we live in worlds you do not see. We hide from you, lie to you, we cheat and steal from you, threaten you, we manipulate you to get what we want and we often tell you only what you want to hear. And whenever we attempt to tell you the truth you do not listen ..."
The most useful purpose the study served was to make participants realize, perhaps for the first time in their lives, that they were not society's scum, and that their experience and opinions matter and could help save a generation of young people from damage. It is with the same idea -- trying to prevent others from making the mistakes -- that more and more people are shedding their shame and going public with their personal experiences.
Zorro says that he is not afraid of death anymore. He is prepared to let his body perish when ever the time comes. In the meantime, he is working as a peer counselor where he gives as much information to as many people as possible about the dangers of drug abuse.
Wisnu, 34, is a marketing executive and gay. In 1994 he was told that he was HIV positive. Today, he feels happy and healthy and spends his day doing what has to be done, one moment at a time. However, initially he lacked the confidence to look life in the eye. When he realized he was HIV positive he felt it to be the end of the world.
"I went into self-denial. I was disappointed, sad and scared," Wisnu said. But after agonizing for a month he was sure that he was not being punished for being gay. He said he should have been more careful in the past when he was 'intimate' with people. He said that now that his body was ill had to treat it just like he would any other disease, he said.
Wisnu considers himself to be a good Muslim. He prays regularly and feels close to God. He does not feel that He is angry with him for being gay. Once he got his thoughts in order his attitude became positive and he stopped suffering. He traces the source of the strength he enjoys today back to his family. The third child of six, he realized he was different from his brothers and sisters very early in life. He feels that his parents, both of whom are dead, knew it too, but they never made him feel odd or unloved. This gave him strength to complete his schooling and to support himself through university.
"Once people are economically independent I realize that few in society dare to push them around," Wisnu said.
But, unlike Wisnu, many other gay and HIV positive people still feel reluctant to talk about their problems publicly, especially women, due to a host of reasons like guilt, hopelessness, suppressed anger and fear -- all of which are negative emotions that play havoc with an already fragile immune system.
Immune
HIV is said to be as old as mankind itself. The immune system, which is responsible for defending the health of the body, collapses when the blood cells protecting it from germs begin to gradually deteriorate. AIDS appears when the presence of HIV in the body weakens the body's ability to provide immunity against infections attacking it from the outside.
However, treating those afflicted with the virus like outcasts is unnecessary as infection can only spread through blood transfusions, genital fluids or saliva. A healthy person will need to consume over one gallon of infected saliva to get the virus. Many HIV positive people have said dying does not bother them so much, but being treated like an untouchable while they are still alive does.
"The HIV virus certainly does not mean a death warrant," said Putu Oka Sukanta, author of Kerlap-Kerlip Mozaik (Sparkling Mosaic), a recently released book on AIDS.
An acupuncturist, Putu has been practicing alternative medicine since 1975 and is still searching for a cure for the virus.
Chris W. Green, an AIDS activist since 1991 and editor of Wartaids, a monthly AIDS support newsletter, knows of patients who have been turned away from hospitals and doctors who will not treat those infected by the virus.
He would like to see real changes taking place here at different levels of society, including heads of family and government and religious leaders. What people like Chris and Joyce, and a growing number of people like them, have in common is their refusal to deal with HIV and AIDS as a moral problem.
For they have found that here is a condition that seldom discriminates between men, women or children, the god fearing or the atheist or different nationalities, and one that needs to be treated with the ruthlessness that it deserves.