If you care, John need not die twice
The New Indian Express, Bangalore

Priya Ganapathy

He stood there in the sunshine devouring some chocolate, not knowing that he would die sooner than most of us. Amit is a friendly and frisky two-year-old kid who is HIV positive. Funny thing is he doesn't "look" like an AIDS patient. His father, mother and two sisters (six and four years old) are also HIV positive. When you visit Freedom Foundation in Bangalore, you know that "AIDS" can be your next door neighbour. Like some people have cancer, others have AIDS. And it can happen to anyone.

If there could be 85 known cases of AIDS since January '97 in one centre alone, you can work out the statistics for the rest of Bangalore. Still, the State Department's monthly update in Nov'97 is a confirmed 3,557 HIV positive cases. Those with full-blown AIDS is 121. The number of registered deaths between '87-Nov '97 is 65.

The first time I visited the Centre, I was scared. I'll admit it. Politeness has nothing to do with your discomfiture. The only thought that reverberated in my head all the way back home was "Did I just get infected? Should I .scrub two layers off my skin?" I visited them again, for somehow when you talk to them and stare at death in the face, you desensitise yourself to preconceived notions.

Spreading awareness about the disease removes the element of fear from people's minds. But that is not enough. There are hardly any steps being initiated for those already inflicted with AIDS. It's bad enough to have an incurable disease, but it's worse when society's apathy buries the problem.

HIV is not restricted to certain classes or colours of people. But promiscuity and blood transfusions account for a major slice of the AIDS pie-chart; and that factor is enough to put a great many at risk. Bangalore has a fair share of people calling up the centre and asking for details. Some callers are afraid to come for counselling sessions because they are affluent and afraid of being identified. The lifestyle of a trendy Bangalorean promises a high risk of promiscuity. Wife-swapping parties, holiday romances and careless sex with strangers could prove to be a fatal price.

I met John at the Foundation, who is a young, educated, working guy with hopes and dreams of a great future -just like us. Lt was a rude shock to him when he was deported from the Gulf when he tested HIV positive in '95. He had not indulged in sexual activity in the Gulf, he was just too busy working. He had acquired the disease during the fateful year 91-92, in Bombay when he had visited some commercial sex-workers out of sheer curiosity. His friends indulged in sex in the seamy red-light areas and he doesn't consider them a bad influence. They led normal adolescent lives, wanting to try out everything from cigarettes and alcohol to drugs and sex. "We all come from a decent background. I blame myself for it. I knew what AIDS was all about, in my emotions took over my intellect."

Karl Sequeira, founder Trustee of Freedom Foundation said, "There is a significant sexual liberation among college students. While conducting classes on AIDS in one class of first degree students, I found that about 50-60% of them had had a sexual encounter, usually with prostitutes."

There is a two-fold price to pay for this nowadays. Before your physical body dies, your spirit is killed when you are ostracised by society.

When John returned to Bombay from the Gulf, life wasn't so easy. ''I wasn't prepared to leave my cushy job in the hotel industry. With four hours to pack up and leave, monetarily too, I lost a lot because I was not able to close my bank account. In Bombay, I had family problems and some of my friends rejected me. There are very few who still keep in touch. When I told my friends that I was HIV positive and requested them to get a check-up, they were too scared to do it.''

"Disbelief is what hits you first," he says, in a matter-of-fact manner. He says that between '95 and '97 he tested himself thrice. Initially he felt "It can't happen to me" and needed to confirm it. Later, it was for medical reasons. He is unsure about whether it is right to confess his problem. "I was frank and told my employers about it. There are many others who don't. I love to work. I was very active and used to walk a lot.

Now, I know that the disease is slowly killing me. I get more tired and can't have strenuous activity. The fear of death is there in everyone. Except in this case you know that a lot of avenues and doors arc closed and there is no help from anyone. Among low income groups, you may understand the problem but may not want to deal with it. You just carry on, you are at a stage where there is no outside support. Maybe at the back of your mind, you take precautions but anything can happen. I meet college students regularly and am involved in AIDS awareness programmes and seminars and then tell them my part of the story. There are so many of us who want to get married and enjoy life. There have been some who have managed to fulfill their wish by marrying another HIV positive person."

Some of you may say that John asked for it by going to a prostitute, but take the case of Yamuna, a 22-year-old-girl. She got married when she was 21 to a factory worker. A good housewife, Yamuna worked in hospital and stitched saree falls at home, to make ends meet. After six months, the honeymoon was over. She realised that she had married an adulterous drunkard who abused and beat her. He'd stay away for days and her friends warned her about his womanising. One day she saw him with another woman. She left him and joined an ashram. There she learnt that she was pregnant and her blood test indicated that she was HIV positive. She came down to Bangalore to stay with her younger sister who visits her now' and then at the Centre.

She gave birth to Namrata, a beautiful baby in April. Namrata's death in June left her totally devastated. "I curse my husband every day. He called up and threatened to marry someone else. Let him die, the son-of-a-bitch. I have no reason to die young."

On some days she secludes herself and keeps crying, but most of the time she is cheerful with the others at the centre. She has no fear when she talks about death. "It is routine now. I have seen 19 deaths at the centre. If you are sick, you die... if you're fine also, you die. That is reality. One must make use of the days you have on hand." She finds peace here because she is given symptomatic medical treatment and regular counselling sessions. She spends her time cooking or doing embroidery. But there are days when she feels really depressed and has black-outs. "I miss being independent. I used to make Rs 90 everyday doing falls. Today, I have no employment. Even dogs have better lives. I feel like side-swept trash. I wish I could work. Of course I wanted to go home to Bhadravathi. But, my mother died before I reached there. I don't want to cause any more problems to my family," she says.

If society must ostracize HIV positive people, there should at least be steps to provide facilities to keep patients occupied. Schools, vocational guidance and employment for AIDS victims are necessary.

Ashok, also founder trustee of the centre says "When you test HIV positive, you may survive for 6-8 years with adequate precautions, before the immune system starts breaking down An AIDS patient can survive for three years. It need not necessarily be a miserable three years, if some cared.

Ashok says, "There are going to be more and more cases and the situation is very grave. Man needs to work and he needs the right environment. It is terrible when you live with the guilt of not confessing that you have AIDS just to keep your job and friends. It is only after an encounter with an AIDS that your attitude or fear will change." As one counselor put it, "If HIV goes underground it doesn't make it more safe. It is better to let it come out in the open and deal with it. Social stigma and ignorance is not going to solve the problem."

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