Living with AIDS, not despair

On a winter afternoon, many years ago, a young man who greeted me at Michael’s Care Home, a south Delhi refuge, smiled cockily and told me I had got it all wrong. “I am HIV positive. You are not. You think I will die soon. What if I tell you that you may die tomorrow, and that I will live longer than you? Is that so improbable?” I was taken off-guard. I had gone to the Home in search of “real life stories” of people living with HIV who were fighting a dual battle — the virus, and the stigma that came with it. I felt sorry and wanted to focus on their plight. But the young man who hailed from Manipur was laughing at me, and telling me not to waste my pity. Sure, it was a tough life, sure there was stigma. But there was so much more as well. Just because he was living with HIV did not mean he had to be viewed as a “patient” all the time, he said.

In his office, there were posters of Elvis Presley and we spoke less about AIDS and more about rock music. He invited me for Friday “Coffee Nite” at the Home. I was curious and turned up. The Home’s inmates were a lively bunch — mostly young men from the Northeast, who had contracted HIV through intravenous drug use. They sang, strummed the guitar and danced. It was a party. I joined in, and loved every minute. I dropped by Michael’s Care Home many times in the years that followed even when I was not in search of a story. There were times when a pall of sorrow hung over the Home. An inmate had died. But most often it was an atmosphere that celebrated the small joys of life, like a victory in a football match and the daily acts of incredible courage.

Once, I turned up with a camera. The boys had one condition: they did not mind being photographed as long as I did not show them lying on a bed or with medicines as background. I shot them playing carom, watching Bollywood movies and chatting with each other.

I liked turning up at the Care Home on December 1, World AIDS Day, to light candles and express solidarity. I invariably stayed on for the feast and the dancing that followed.

Loon Gangte, the young man whose jaunty remark spurred me to revise my view about people living with HIV, is a friend today. We are both alive and have children. Gangte has emerged as one of Asia’s most dynamic treatment activists. I have chronicled the stories of many other people living with HIV. Gangte’s HIV status is a minor detail in our friendship. He is simply a fun guy who has taught me stuff I would never have learnt from a book or conventional “experts” in the AIDS conference circuit.

In my travels across the country I found the same indomitable spirit in countless individuals and families who are bearing the brunt of the AIDS epidemic. While writing the book Hopes Alive: Surviving AIDS and Despair for FXB India Suraksha, the Indian affiliate of the Swiss NGO, FXB International, I came upon a scene in a little room in Chilakapeta, a fishermen’s colony in the coastal city of Visakhapatnam, that was sad and stirring. The room was home to a a nine-year-old boy and his grandmother. The child was HIV positive and had lost both his parents before his first birthday. No one in the family was prepared to look after him except his 60-year-old maternal grandmother, an illiterate fish vendor. There was no place for the two inside the house. They were forced to take refuge in a little corner beside the staircase in the building. The stigma was so acute that the rest of the family eventually left the house, unwilling to be anywhere near the infected child and his caregiver. Meanwhile, the child’s condition deteriorated: he had continuous fever and a persistent cough. The old woman took him to the hospital affiliated to the local medical college, and the child was diagnosed with tuberculosis of the brain. In 2004, the child and his grandmother were referred by an NGO to the FXB clinic at Visakhapatnam. The boy was extremely weak the first time he came to the clinic. But once treatment began, there were rapid changes. Initially, he was treated for recurring skin, respiratory, ear infections and diarrhoea. On being tested, he was found to be in the fourth stage of HIV infection (AIDS). In August 2005, he was put on liquid formulation of the three drug ARV medication. The old woman confessed she was terrified by her new responsibilities at the start. But thrice a week, an FXB outreach worker paid home visits, monitoring the grandmother’s ability as a caregiver. Within three months, the child’s condition had improved dramatically. And after six months of ARV treatment, he had gained height and weight and could start going to school.

Treating a child for HIV infection is a complex process because the dosage adjustment is done for each of the three medications factoring in height and weight from time to time.

The old woman was proud that she had learnt how to look after her grandson despite her lack of education. When we met them, the child had just come back from a tuition and the grandmother was quizzing him about his day at school — a scene with which anyone can connect.

There is no formula for turning pain into power. But December 1, World AIDS Day, offers us an opportunity to celebrate the voices of resistance and hope — like Gangte, the grandmother in Chilakapeta and all the others living with, or affected by HIV, whose actions and words teach us how to survive despair.

Today is World AIDS Day

Patralekha Chatterjee writes on contemporary development issues, and can be contacted at patralekha.chatterjee@gmail.com