Life in the times of AIDS

By K.P.M. Basheer

KOCHI, NOV. 27. "My father has threatened that he would hang himself if I visited my home again. My sisters, all educated, pray for my early death. An AIDS patient has no parents, no relatives, no friends."

This is how Ashok, 44, of Kochi (real name masked to protect privacy), who says he has only a few months left in this world, describes life in the times of AIDS.

Nearly two decades after AIDS broke out in the world and some 10 years after it appeared in Kerala, followed by several high- decibel awareness-raising campaigns, AIDS patients continue to be the most-dreaded human beings in the State. "People forget that we are humans too," Ashok rued in an interview with The Hindu. "They fail to understand that we are sick needing their help and understanding," he said between bouts of coughs.

Ashok, who is involved with a Kochi-based organisation of HIV positive persons, feels that it is because society is closed on them that the AIDS patients refuse to come out of the closet. "My hunch is that there are several thousand HIV-positive people in Kerala, unknown to the world, who are scared to share their grief with any other human being."

His organisation, which is the Kerala-Lakshadweep unit of the `Indian Network of (HIV) Positive' persons, has 40 members, including women. But, he says, 40 is no indication of the extent of the spread. A visit to a certain Christian meditation centre in Thrissur district and a rehabilitation centre being run by the church near Thrissur would give an idea of the number of HIV positive people in the State.

HIV-infected children

He feels that Thrissur has the largest number of affected people. There are several children with HIV who got infected by their parents. He said he knew of a couple who married after both of them were diagnosed positive.

Ashok was diagnosed positive over a year-and-a-half ago. He had never suspected that he carried the deadly virus for years. The first manifestation was an irritating skin condition. Then he had problems with breathing and also heavy fatigue. He was first admitted to the Ernakulam General Hospital, but the condition was diagnosed in a private hospital in the city later on. "I was shocked initially, but later learned to accept my condition and tried to make peace with it."

Soon, he lost a lot of weight, had continuous fever, fatigue, stomach upsets, frequent vomiting, constant headache, ear ache, dimming of eyesight and a host of other ailments that visited him regularly.

Stopping for breath every now and then and keeping mum for minutes to regain the energy to talk, Ashok recounted his life.

It was a life typical of most HIV carriers. An unmarried graduate, he worked in the construction industry for nearly two decades outside Kerala, mainly in North India. "I have no idea from whom or where I caught the virus. My hunch is that I got it from some brothel." He had visited several sex workers. He also had a few homosexual encounters, though he insists that he was not a gay.

Another possibility was the drug route. For sometime, he was addicted to drugs. Intravenous drugs, marijuana, charas, brown sugar...The drugs were taken mostly in group sessions and it was easy for the virus to travel from one drug addict to another.

"After I diagnosed positive, I never had sex with any one and I have never used drugs," he claims. Does he feel guilty for unknowingly supplying the virus to others all these years? "Not exactly. If I have infected others it was unintentional."

After the diseases set in and his home became off-limits for him, Ashok spent a few weeks at the Christian meditation centre. Later, he stayed at the Sathya Sai Baba Ashram in Puttaparthi for one-and-a-half months before returning to Kerala. When there was no money to even eat, he sought refuge at the AIDS rehabilitation centre near Thrissur. "I was disgusted with the kind of life at the centre and so, after 10 months of living there, I came out." At present, he stays in a cheap lodge in Kochi. "Now I am penniless and unemployed." He got work as an office assistant, but could not keep it for more than a week because of the unbearable fatigue.

Misplaced scare

I know my days are numbered, I am ready to face death any time," he says. Antibiotics keep him going.

Ashok is emaciated, he looks much older than his 44 years. His walk is unsteady because of a serious ear infection. Now, he spends time "reading, writing and trying to help other AIDS victims."

Ashok is not sorry for his condition. But he is terribly angry with the way society treats AIDS victims. "It's your fault; go and die," is the general attitude of the people, Ashok laments. In his view, what an AIDS patient, haunted by an array of infections, needs is sympathy, understanding and help. "But what the society does is hounding the victim out of sight." Though HIV infection is not possible by touch, kiss or even drinking from the same glass, people are scared even to pass by a positive person, he rues.

He also finds faults with the anti-AIDS establishment. "The whole approach to AIDS in Kerala is flawed." He alleges that a sizable chunk of the crores of rupees being pumped into AIDS prevention and care go into private pockets.

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