HIV-positive and living life normally

HIV-positive and living life normally - almost
LEELA MENON

KOCHI, MARCH 17: Her face is a collage of conflicting emotions - shock, fear, grief, anxiety, and hope.

Says Anna, aged 26: "I came to know that I am HIV-positive today. I lost my husband three months ago to AIDS. I thought I was not infected. I just tested my blood out of curiosity, to confirm that I am not positive. The result has come as a shock to me and I am devastated. It is only these people who are cushioning the impact and giving me hope."

The 'people' she is referring to belong to the Council for People Living with HIV in Kerala (CPK-Plus). (All names given are fictitious)

They certainly do not match the tortured images that one associates with the HIV-positive. Cheerful of mien, robust in health, open in their behaviour, they are indistinguishable from the normal swinging hep crowd. They are not emaciated, decrepit, stealthy or cowed by their harsh fate.

"I am planning to get married. My bride is 27 and is also HIV-positive," says Bejoy, happiness personified. "I have been living with HIV for the last nine years. Initially, I waited for death. I realised that death was indeed quite far. Now I am not even aware of its lurking presence in my blood. I suffer from no symptoms or systemic infections. Few of us do. I am able to work and live a productive life. This is just another infection, not doom."

What has sustained them through this deadly invasion of the killer virus?

"The CPK-Plus has helped us to accept the truth and come to terms with it and enjoy life. It is the mindset that matters. Peer presence, their positive vision, and optimism - all these are encouraging," says Nisha, who recently lost her husband to AIDS and who is HIV-positive. "It feels good to meet, to keep in touch, to help each other find jobs, to nurse them in sickness," they say unanimously.

"When my husband was admitted to hospital with AIDS, my blood was tested without my consent. Everyone in the place I work knew that I was HIV-positive except me and the institution asked me for my resignation. I was crushed, but I stayed with my husband till his death."

"After his death, my people took me home. Initially, the neighbours avoided us, afraid I will infect them by my mere proximity. But now they have become aware that HIV is just another infection and have become friendly. I was in total despair until I came for counselling at Ashraya and became a member of CPK-Plus. Interacting with them has erased my phobia. I am searching for work now," Nisha says.

"There is absolute need for sensitising the people," according to Dr Rama Menon, the mainstay of Ashraya and the backbone of CPK-Plus.

There are 45 of them, including seven women, coming from across the length and breadth of Kerala, united in their affliction, determined to LIVE life. "No, we do not seek sex now. The infection has muted our sex urges," confesses Joshi, who is HIV-positive.

Currently, all that mars their joy and optimism is the periodical infections they contract because of their weakened immune system. Shibu is the only one among them who is silent and downcast.

Says Dr Rama: "He was suffering from a fungal infection and that has demoralised him. They are vulnerable to TB infection, but the government's TB programme is very strong. They get free and effective treatment. The treatment for systemic fungal infection is very expensive and patients have to buy the medicines themselves. The government should provide them with the medicines for this disease as well."

There are other emotional problems they encounter. Abu's wife deserted him after she came to know of his HIV status. He is unfazed, but for the fact that he is not permitted to see his child. "Both my wife and child are negative," Abu says with visible relief, adding: "I wish she would let me see my child."

There are couples also in CPK-Plus, as normal and happy as any other, with the wife nursing no bitterness about the infection given to her by the husband. Says Ramani: "My husband was found to be HIV-positive when his blood was tested for a cataract operation. The families rejected us outright. They asked us to go into some forest and die. They looked at us as if we were some creatures from another planet. We left our place and live in anonymity now. My husband has found work. He has no symptoms, but I continue to experience mild infections on and off."

Any hope for the HIV-hit?

"They can live a quality life until some opportunistic infection kills them. Some of them need medication like the anti-retro-viral tablets, which is imported and very expensive. They need governmental support," stresses Dr Rama.

"What is necessary is community sensitisation and peer interaction. We have registered a post box so that other HIV-positive people can get in touch with us, but we have no funds to publicise it," says the CPK-Plus president.

Their post box number is 2002, Kadavanthara, Kochi - 682 020. They have also brought out a sticker, asking the HIV-hit in the State to get in touch with them. The CPK-Plus meets once in three months.