HIV positive people tell how it is for them

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.