Just came across the life of two HIV positive people from two diverse walks of life. But they two have one thing in common - A strong will to live every moment of their life for other benefit. They have accepted the reality and continued to live every minute to the fullest instead of sitting in a corner and cursing the world.
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 testAshok 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: JoblessA 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.
Source:
Rediff
I first met Kousalya in 1999. She was just back from a hospital and looked extremely thin, tired and weak. But her strength shone through in a joke she cracked.
Visits to hospitals had become a part of her life, she quipped, like visits to cinema halls and supermarkets are to other people.
Six years and many meetings have passed since then. Kousalya is now the face of India's battle against the dreaded Human Immunodeficiency Virus that causes the Acquired Immunodeficiency Syndrome, or AIDS.
Yes, Kousalya is HIV positive. And she has not let the virus drag her down to negativity. She has fought it every way she can -- not only inside her body or in Namakkal, her hometown in Tamil Nadu, but all over the world.
Ten years ago, Kousalya was the ordinary young bride of a truck driver. Within a month of her marriage, her husband fell ill. His doctors wanted a test to be done on her too. The results said she was HIV positive.
She didn't even know what it meant, then.
Seven months later, AIDS, the new word in her vocabulary, killed her husband. Some of the doctors gave her two months to live.
She proved them wrong.
The thin, tired Kousalya has now added a few kilos, and a lot of self-belief. From a timid girl hesitant to speak even in Tamil, she has transformed into a woman who radiates confidence and is quite fluent in English.
As the president of PWN Plus -- Positive Women Network Plus -- she is the brave face of HIV positive women in India.
"When I first started taking the ART [anti-retroviral therapy] drug in 1999, it cost Rs 7,000, now I need to pay only Rs1,600 for it. I need one dose a month. Now, the government gives it free also. But since I can afford it, I buy my dose," Kousalya says, outlining probably the most positive development for AIDS patients so far.
One aspect of Kousalya has not changed, though. She still wears a smile, always, though it hides a volcano of pent-up anger. Her husband knew he was HIV positive when he married Kousalya.
"I couldn't bear the thought of being cheated. More than sad, I was very, very angry," she says. "Even today, the thought of having been cheated is extremely painful to me. I still can't get over it."
Unlike many HIV positive people in India, Kousalya's family and friends stood by her, which gave her "the courage to face the reality."
"Though there is stigma and discrimination attached to HIV and AIDS, I did not face it. When I came to know that there were other victims also like me, I wanted to put an end to such injustices. I decided no other woman should go through what I went through."
Kousalya decided to speak to the media about how she was cheated and what precautions young girls should take before getting married. It was a brave step at a time when AIDS patients had as hard a time fighting the society as the disease. As Kousalya recalls, "In those days, nobody openly admitted to being HIV positive."
Kousalya even let herself be photographed.
What changed her life was a meeting she had with Ashok Pillai, an HIV positive person who made no bones about his ailment, in 1997. Pillai and Kousalya were both in Madurai as speakers at a public function.
"It was from him that I got the strength and confidence to face the world, and speak aloud," says Kousalya.
When Pillai modelled for a poster on HIV positive people, it was the first of its kind. "He was the first one to come out. But today, there are so many such faces in the open," says Kousalya.
She moved from Namakkal to Chennai with her uncle, and joined Pillai in his initiative called INP Plus (Indian Network for Positive People Plus).
When INP Plus decided on a separate wing for women and children, they started PWN Plus. And who better to head it than Kousalya? From 60 members, the number of women members of PWN Plus has grown to 5,000.
The first international conference Kousalya attended was in Malaysia, in 1999. "I didn't know anything about conferences then. I didn't know to speak or express myself in English. I was also very scared. I asked for an interpreter and spoke in Tamil on what we 'positive' women faced," says Kousalya.
"I also had to make a presentation at the conference; Ashok helped me. It was Ashok who gave me a lot of confidence and allayed my fears. We also fought a lot. Ashok said I should not talk ill of my husband but I could never forgive him [her husband] for what he did to me. Ashok also pointed out that I had a lot of pent-up anger in me which I should learn to channelise."
The anger is still there, but she has harnessed it. "My anger gives me a lot of energy, and I use it to do better things. But when I feel terribly angry, I give vent to my feelings by painting. Painting to me is like shouting or crying aloud."
Times have changed, Kousalya says. There was a time when people would not even go near an HIV positive person. "Now the general public, at least in Tamil Nadu, do not show any discrimination.
"It's all because of the networks we have even at the district and sub-district levels. To remove stigma from this disease, even the government is taking us to various platforms and making us speak. That is not there in other states, except Andhra Pradesh."
Kousalya says till recently, the National Aids Control Organisation used to draft policies on its own. Now, because of protests from various networks, NACO is involving HIV positive people in its committees.
Similarly, NACO did not even have programmes for women, except for commercial sex workers.
"Who will know us and our problems better than ourselves," asks Kousalya. "Things are changing now, with gender committees and gender desks in place."
Now, new projects and travels take up most of Kousalya's time. Her life revolves around PWN Plus. "I don't think of myself as a separate identity from PWN Plus. When I look back, I cannot believe how far PWN Plus has progressed and how much we have achieved."
She is also doing her thesis as a population health Fellow with a fellowship from the Population Council.
Does she miss being married, having a family, having children? Kousalya's answer is a firm 'no.' "Because I have not seen any man who is different. I find them still the same. As for children, I see a lot of children all around me. I told Dr Manorama of CHES [a Chennai organisation that works with AIDS orphans] that I wanted to go there on Sundays to take care of the AIDS orphans but soon I found I have no time for that," Kousalya says.
"I look at it this way: There are so many women and children who are suffering; why not spend my life for all of them?"
She does indulge in life's simple pleasures -- like riding a two-wheeler to office. "I wanted to own a vehicle for a long time. Now that I have one, I feel so liberated and free -- like a bird."
Dreams? She chuckles. "I have spoken in the Indian Parliament to our MPs about the problems HIV positive people face. I also was fortunate enough to address the UK Parliament. I have had interactions with our President Dr APJ Abdul Kalam, with UN Secretary General Kofi Annan and also with Congress President Sonia Gandhi," Kousalya says with evident pride.
"I could achieve all this because I was an HIV positive woman. I consider these some of the advantages of being a 'positive' woman! If I were not HIV positive, I would have lived like an ordinary woman in Namakkal!"
The extraordinary woman from Namakkal has given the phrase 'positive thinking' a whole new meaning.
Source:
Rediff
