December 1, 2000


Rediff Shopping
Shop & gift from thousands of products!
  Books     Music    
  Apparel   Jewellery
  Flowers   More..     

Safe Shopping

 Search the Internet      Tips

It is not important how I got AIDS, but how I am living with it It is not important how I got AIDS, but how I am living with it
Shobha Warrier

Music is Ashok's absorbing passion. He loves those warm, sentimental Hindi songs of the 1950s. He plays the harmonica, the banjo and the electronic keyboard.

Full of joie de vivre, he is fiercely cheerful. He enjoys Hindi movies hugely... but only those with a good storyline. Like Sarfarosh.

But there is more to Ashok's own storyline; footage more compelling than Sarfarosh.

He has been HIV positive for the last 11 years.

And Ashok Pillai is just 31 years old.

1987: The test

Ashok joined the Indian Navy when he was just 17.

One day in 1987 -- just another working day -- Ashok had gone to hand over a medical report to the medical officer when the latter noticed a rash on his skin.

His reaction was that of alarm. "What's this? Haven't you shown this to a doctor? Drop everything now and go to the hospital." He went to the hospital and was admitted immediately.

From that day onwards, Ashok's life began to take bizarre turns.

Ten days of antibiotics and he was cured.

"After I was discharged, I was asked to give a blood sample for testing. I gave it without pondering over why it was needed."

"They asked me to get my blood tested a second time. This time too, I didn't read the doctor's note. It was when I was asked to do the test for the third time that I looked at the paper. It was written, Elisa (Enzyme Linked Immuno Sorbent Assay) for HIV.

"I asked a friend of mine what the Elisa test was all about. He said it was the AIDS test."

Ashok was sent to Pune's Armed Forces Medical College to do the special Western Blot test at the National Institute of Virology.

He was shocked when the hospital authorities admitted him in an isolated ward, far away from the main ward and other patients. Since the test could only be done when the ward had enough patients, he had to wait... and had time to think.

"I thought of what I should do if the test turned out to be positive. Somehow I believed it would be negative. Then again, I thought... even if it were negative... what would I do? Would I be able to change anything? I was resigned to my fate and ready to accept my destiny without any complaint. I am a Hindu and take inspiration from the Bhagavad Gita."

Three months passed. Not a single doctor made an attempt to prepare the 19-and-a-half-year-old boy to face one of the most difficult moments in his life. Even after the Western Blot test was done, there was no counseling.

One day the doctor just called him to the room and told him bluntly: "Your HIV test result is positive."

"What is HIV?" asked Ashok.

"It's AIDS."

"What about the treatment? Will I get any medicines?" he asked.

"There is no treatment as such," came the dispassionate answer.

"What am I supposed to do then?" he asked.

"You can eat good food, sleep well, exercise and live."

"How long am I going to live?"

"We don't know. You might live for two years, three years, four years..."

"Okay, fine. At least I have four years to live." Ashok smiled and walked away.

He reminisces: "Generally, when people are told they are HIV poisitive, there are denials, angry outbursts, tears, fear, guilt, etc… But I didn't indulge in all that. When I took the news in my stride, it shocked the doctor so much that he thought I was 'abnormal' and asked me to meet a psychiatrist! Of course, the psychiatrist found me quite normal!"

"I thought, 'Many people had died young. So, if I am also going to die young, it's fine with me.' I gave myself two to three years or at the most four years. But 11 years have passed and here I am, living a normal, happy life."

Ashok disclosed his 'status' to his friends immediately after the test. But it took him three long years to break the news to his family. "I suffered from feelings of guilt and shame, as I am the only son of my old parents and the only brother to four sisters. I didn't how they would take it. My father, I knew, was a strong person. But my mother… my sisters… I was not sure about them."

After carrying the burden for three years, Ashok broke the news to one of his elder sisters. She burst into tears. Soon, he informed his other three sisters but they did not cry. They just accepted the reality. Later, I told my parents as well.

"None of them asked me how I got it. That was the most beautiful part. They didn't want to know that. That was not important for them. They have accepted the fact that I am living with it. Even now, they are only worried about how I live here all alone and whether I take care of myself well, eat properly and sleep well.

"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. It is not important how I got it. How I am living with it is more important.

"You cannot change the course of life. You cannot create a new path in your life. My policy is to accept life as it is.

"I have grown. I am 31 years old now. I have learnt a lot. My attitude to life has changed. I have learnt that you can plan your life. I have learnt that a man can change his destiny."

1994: Jobless
A prolonged fever refused to abate. After shuttling from one navy hospital to another, he finally reached the cardio-thoracic centre at Pune. He was treated for TB. The treatment was effective. The fever vanished and he gained around seven or eight kilos.

Then came the shock. A letter arrived from naval headquarters, cataloguing the diseases that he had suffered from and asking him to quit his job. The navy offered a disability pension and a small amount of compensation.

With no option left, Ashok left Bombay and went back to his village. "So, in 1994, on medical grounds, I was thrown out of the service. They feel people like us fall sick more often than the others. But what they do not understand is, we do not fall sick if proper counselling is given. I felt very bad then. Six years have passed and I am still living a healthy life."

From 1994 to 1996, after he was relieved from the navy, he tried his hand at many jobs, including running a restaurant in his hometown. But he was not comfortable or happy with whatever he was doing.

"I felt aimless. People live for some purpose in life. But I didn't have any purpose or aim in my life then. I was living because I was not dying!"

Ashok's world was rebuilt through a rather ordinary occurrence. He happened to attend a national workshop for HIV positive people in Pune. There were 30 to 35 participants from all walks of life. It was a memorable experience for him to meet them and listen to their problems. Till then, he had only seen and met HIV positive people from the navy.

To his horror, he discovered they were facing worse problems than he was. They had been discriminated against by doctors and colleagues. While in the navy, his colleagues never discriminated against him. They were not allowed to. They painfully described their terrible isolation. The discrimination was more out of fear and ignorance than anything else. For the first time, he heard of a totally different perspective of life.

They enthusiastically spoke about the critical need to have an organisation or a platform for the AIDS-affected -- a place where they could raise and discuss the crucial problems they faced in society. How would they run it?

Ashok came forward. He was elected general secretary of Indian Network for People Living with HIV/AIDS or INP+.

This gave him a new reason to live. His life suddenly gained purpose and direction.

To take charge of INP+, he shifted base from Bareli to Madras. "It was an emotional decision for me. I didn't have any experience in running an organisation till then. Forget about larger issues, I didn't know how to take care of myself."

"Now, I am running an organisation. I am advocating for the rights of a group of people. I am networking with people who are HIV positive all over India. I work for 12, 13 hours a day. Our aim at INP+ is to give support to people with HIV. We provide information to all of them on HIV so that they can live a better life and form a self-help group."

INP+ was formed with 12 people in February 1997. Three years later they have more than 1,000 members from 14 states in India. INP+ has seven state level networks -- in Tamil Nadu, Karnataka, Maharashtra, Goa, Kerala, Manipur and Pondicherry. The organisation also has a network for women; Positive Women’s Network, the PWN+.

Except for some help from the Tamil Nadu government, the network has not received any support from the central government. A US-based private firm that has offices in Bangkok and New Delhi supports the organisation by giving them a grant for printing posters, running the office, etc.

Life continues…

"Nobody likes to be terribly sick or in bed. Nobody likes to be a burden on others. Sometimes, I fear that. I have had a good life. Even now I lead a good life -- working out, singing and listening to music. For the last few months, I have been working 12, 13 hours a day. There is only work, work and work and no entertainment for me. That is taking a toll on my health.

"I have had relationships, but they have never lasted long. Many wanted to be my girlfriends. They thought it was fashionable to tell others that their boyfriend was HIV positive. There were some good times too in those relationships and I miss them.

"I am beginning to face 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. My CD4 count is 10 now. People start expensive treatment when their count is 200, 300. I have to take a decision about starting a treatment but it is very expensive. I need to think about what I want to do with my life.

"I am not a rich person whose only problem is HIV.

"I have four unmarried sisters at home and I am their only brother. My father is very old. Their responsibility is on me. My mother died ofcancer last month. I feel bad because I cannot contribute financially to my family and take care of them. But I don't have any regrets in my life… life continues."

Then there is always music. And moments of escape in darkened theatres showing films like Sarfarosh.

Would you like to get in touch with Ashok Pillai?

Design: Dominic Xavier

Project Hope

The Rediff Specials

Tell us what you think of this feature