Survivor

In her spartan single-room home in Manipal, the slightly-built music graduate looks back on her life, and that moment of realisation. ‘‘It slammed me. The walls caved in quietly. The doctor kept talking but I heard only voices, not words. My knuckles were water, my stomach churned, I couldn’t breathe. I wanted to scream, but my throat closed up…’’ Veena had been nursing her husband, an AIDS victim, for two years. But that morning at a private hospital in Manipal where she went for a check-up, she just couldn’t accept that the virus had her too.

‘‘They said I could try the anti-retroviral therapy (ART), costing a few thousand rupees a month, if I could take the side effects.’’

Veena rushed out of the hospital, jumped into an autorickshaw, and screamed her heart out. ‘‘The driver asked if someone had died. I couldn’t tell him it was me, inside.’’

Veena’s husband, an officer with the Syndicate Bank in Manipal, was a chronic alcoholic who tried to set up a business on the side. But he was soon plunged into debt. Unable to cope, Veena separated from him in 1992 to stay alone with her son. But three years later, her husband joined them.

Driven to the wall by threatening financiers, he used to bring up the idea of them committing suicide. Unable to kill her little son, Veena tried to kill herself thrice and failed.

Her husband soon slipped away to Mumbai. ‘‘I thought he was gone for good, but three months later his sister called up to say he was back in Mangalore—in a hospital, and dying from everything from ulcers and TB to jaundice,’’ she recalls.

When the hospital told her to take him away, her husband insisted he be allowed to pledge his eyes after death. The doctors refused—he had AIDS.

Her husband died after a few months, but not before he had given her another jolt. ‘‘A few days later, I managed to ask him if he had known that he had AIDS while we were living together earlier. He confessed he did, but hadn’t cared to keep away from me in his alcoholic haze.’’

Veena’s sister, a copywriter in Switzerland, agreed to bring up her son. Her brother, a journalist in the US, kept motivating her to fight on, on her own.

In 2000, she helped found the Karavali Positive Women and Children’s Network (KPWCN), a voluntary body to guide the HIV-infected, helping them to live on, and campaign against discrimination. Veena now works 16 hours a day, seven days a week, dividing her efforts between her former employer VALORED, an NGO into primary school development in rural Karnataka, and KPWCN. ‘‘We meet dozens of people like me. Seeing and talking to me often makes them want to live on with dignity, and make their lives meaningful rather than give up and wait for death,’’ says the woman, who’s now a regular face at national seminars in various parts of the country, lobbying for a better deal for the HIV-infected.

Most of the infected women and kids who reach her in Mangalore are poor and illiterate, with nowhere to go. ‘‘Mostly, they get thrown out of their homes the moment their condition is known,’’ says Veena. ‘‘Many don’t even have saris or footwear, and most would have already spent everything they have on ineffective ARTs. I end up paying even their bus fare from my salary.’’

Veena says she put out appeals in local newspapers for books, school uniforms and fees for the kids and the vital nutritional powders, vitamins and proteins for the infected. ‘‘No one helped,’’ she rues.

Her outfit was meant for HIV-positive women and kids, but soon, the men began coming too. Veena admits that it was initially scary to have men ring her doorbell late at night to share their problems. ‘‘Many of them would say they could not disclose their HIV infection to their wives, fearing they would kill themselves. Some say they can’t use a condom either, since their wives might get suspicious, or ask for more nutritious food to fight the infection.’’ So her small organisation now works for HIV-positive men as well.

The KPWCN regularly calls on Karnataka’s high-end clubs to keep a part of their entertainment budget for the upkeep of the HIV-afflicted, writes to private colleges to allow fee remissions to children of AIDS victims, conducts sensitising street plays and counsels the affected.

Veena, who is currently working on her autobiography, AIDS and I, has not opted for ART. Instead, she says, she has chosen a combination of connecting with nature, and relying on natural foods and remedies. ‘‘HIV is still seen as a death warrant. People cough up anything for the elusive cure, and get fleeced.’’

She’s decided not to help hospitals and pharma companies ‘‘make a killing from my condition’’. ‘‘I don’t regret it. I no longer fear the virus in me, and that is the most important cure,’’ says Veena, whose son, 20 years old now, is a globe-trotting magician. ‘‘He knows what keeps me going and comes down whenever he can. He is in Udipi now,’’ she says.

The sheer determination in her small frame might amaze you, but she quickly points out that all she has is the will to live on meaningfully while the sand runs out in her hourglass. ‘‘That, and a lot of love for people.’’