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The Rediff Special/Shobha Warrier
April 19, 2003
It was in early 2000, immediately after Ashok Pillai posed as a model for the INP+ (Indian Network for People Living with HIV/AIDS) poster, that I met him in Chennai. I had not yet seen the poster and had no clue what he looked like. I only knew he was HIV-positive and had decided to reveal his status to the world.
As I waited for him in the INP+ office, I remembered the HIV-positive men and women I had met at Udavum Karangal, a home for abandoned people. All of them were poor; most of them were in terrible pain. The young girls who understood what AIDS was cursed the men who had infected them. They could not control their tears as they talked about their fate.
A young man clad in jeans and a tee-shirt breezed into the room, stopped abruptly on seeing me, and extended his hand with an apologetic smile, "I am Ashok Pillai. Sorry, I am a bit late."
To say that I was taken aback was to put it mildly. This genial young man, with his close-cropped hair, did not fit the stereotypical image of an HIV-positive person. He had a wonderful smile and exuded energy and warmth.
Much later, when we were deep in conversation, he told me he posed for the INP+ poster because he wanted to dispel certain myths. Like the myth created through the media that people with HIV or AIDS were all ill and dying. "I wanted to show by example that a person living with HIV is just like anyone else in society, a responsible citizen in all ways."
Once we sat down to talk, nothing could stop him. He was frank and open about his life, though he preferred to keep certain things to himself.
"Earlier, I used to tell people about the probable source of my infection. Now, I feel the source is immaterial. What is important is how you accept the fact and conduct yourself. How I got it is not important; how I am living with it is."
His story began at the age of 17, when he joined the Indian Navy. Soon after, he discovered he was HIV-positive. It took him three years to tell his family he had the dread disease. "None of them [his sisters or parents] asked me how I got it. That was the most beautiful part. They have accepted the fact that I am living with it. Even now, they are only worried about how I live here all alone [his family lives in Bareilly] and whether I take care of myself, eat properly and sleep well."
He was amused when I asked him if he missed having a girlfriend. Laughing heartily, he told me he had had quite a few girlfriends and all of them knew he was HIV-positive. Wryly, he added, "My relationships never lasted long. Many wanted to be my girlfriends. They thought it was fashionable to tell others their boyfriend was HIV-positive. There were some good times too in those relationships and I miss them."
He admitted he had been working 12-13 hours a day for the last few months and it was taking toll of his health. "There is only work, work, and work and no entertainment in my life. I am beginning to have health problems now. The lab report says it is a big problem, but I don't feel that way. Anyway, it has been 11 years [since he was diagnosed with HIV]. My CD4 count has gone down to 10 now. [CD4 cells help organise your body's defences against disease. Healthy adults and teenagers usually have a CD4 count of at least 800 cells per cubic millimetre of blood. HIV attacks CD4 cells and, as time goes by, people with HIV often see their CD4 count drop. When your CD4 count goes below 200, the risk of contracting an illness becomes severe.] People start expensive treatments when their count is 200-300. I have to take a decision about starting treatment, but it is very expensive. I need to think about what I want to do with my life."
It was difficult to believe him; he was so full of energy.
After that, we met again a couple of times, but we talked several times on the phone. He was always the same -- cheerful, relaxed, a man who had no complaints about life.
Pillai, in fact, was passionate about life; he was an optimist who believed in being cheerful all the time. He had the ability to pass on his optimism and energy to others.
When Dr Manorama, who runs the CHES Ashram, a home for AIDS orphans, met Ashok for the first time, she thought he came from an upper-class family, which he did not. "He was literate and could communicate well. He looked every inch a good leader. He looked at his HIV status in a very positive way. I would say he was a role model to many people. After he disclosed his status, many people courageously came forward. All alone, he brought a change in society. The way he fought discrimination was exemplary. I feel he should have lived longer to fight for all the causes he believed in. He even visited our home and felt something had to be done for the children. Of course, his priority was to get recognition for adults with HIV."
Abraham Kurien -- who took over the reigns of INP+ from Ashok -- and Ashok were two of the first HIV-positive cases at the military hospital in Pune. That was in 1992. "Both of us were being treated for TB [tuberculosis]. He went from bed to bed telling silly jokes, making others laugh, talking to people, singing songs and playing his harmonica. He was full of happiness and there were people around him always. He had that special something that attracted people to him. His enthusiasm and love for life was infectious and I took a liking to him. Ashok taught me to see the brighter side of life."
Abraham recalls how, once Ashok decided to work for HIV-positive people, he left his home and family and moved to Chennai where he formed INP+ with 12 other friends. He wrote the by-laws personally.
Ashok was elected president of INP+, a post he retained till his death last year. Under his leadership, INP+ reflected the needs of millions of people living with HIV in the country. In a Commonwealth youth programme publication, he wrote: 'I am an activist, an advocate, a speaker, a strategist, a negotiator, an administrator and a trainer, and there are many more roles that I have to juggle. More than anything, I am a treatment activist. I know from personal experience that young people with HIV die because they are born in this country [India] and that they have no way to access treatment. I have seen how antiretroviral drugs have changed the lives of people in a positive way, and I want that for my fellow people living with HIV.'
Abraham remembers him as a person who was not ashamed to admit his ignorance; he would always ask questions. Within three months of the inception of INP+, he wrote his first proposal. "He was a natural speaker; he worked on his English and believed in improving everything. His hard work transformed him from a simple radio operator to a fierce advocate for people living with HIV. I don't know of any other person living with HIV who climbed the ladder as fast as he did," says Abraham.
When Ashok's CD4 count reached an all-time low of 10, he went on antiretroviral drugs for a short period, but the price and side-effects made him discontinue his medication. His friends were ready to support him, but he declined their offer. "How could I take drugs to save myself when millions of fellow positive people do not have access to drugs even for opportunistic infections?" he would say.
This made Abraham angry. "Many times his stubbornness in this regard made me very furious and helpless. Together with other friends, I would insist he stay alive to continue his activism; we would insist he go on ART [antiretroviral drug therapy]. It was very difficult for him to make that decision."
Dr Manorama agrees: "Role models like Ashok Pillai should have been given medical care, which is lacking in Tamil Nadu."
When he finally made the decision to take antiretroviral drugs, it was too late. "But we never thought he would leave us so soon… He was a fighter," Abraham said.
It was Ashok's dream to die "suddenly, when he was well and working". He started suffering from seizures at 1pm that day. He was in the office at the time. The seizures continued for more than three hours. By 4.30pm, it was all over.
Ashok Pillai, 33, a young man who loved singing old Hindi songs, who loved to play the harmonica, who loved to work out in the gym, who loved to make people laugh, died on April 19, 2002.
He will always be remembered as someone who believed he "had a purpose in life and a dream to fulfil".On Saturday evening, INP+ held a meeting to focus on Ashok's vision and dreams. They began at 1pm and ended at 4.30pm. Many of Ashok's friends, who could not make it to the meeting, lit a candle at 1pm and kept it burning till 4.30pm.
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