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Magazine
Waking up to death
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AIDS is part of our human condition today, urging us to be more supportive and thoughtful to those who suffer from it, says SIDDHARTHA.
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MY first contact with a HIV positive patient was in a small apartment on the left bank in Paris. It was 1985 and AIDS was still a little understood illness for much of the world. Even mentioning the word frightened many people, as if the mere utterance was sufficient to contract the virus. My friend Suzi Curtil, whose apartment was christened La Chatram because she lodged so many penurious Indians who passed through the city, told me that she was inviting a gay couple over for dinner. One of them, Jean, was HIV positive. Suzi told me that she had decided to invite the couple after she learned about Jean's illness. "I wanted them both to feel that there was no difference in my attitude to them and that they were always welcome in my apartment." Suzi was the kind of person who meant this, although I am not sure she wasn't a little rattled herself.
She cooked a meal of grilled chicken and vegetable ratatouille for the evening. I could see that she was excited, as one is when one does something out of the ordinary, an act of mild heroism as it were. Suzi was 65 years old then and deliriously happy helping people in small ways. Her husband had never returned from the colonial war in Algeria, having been declared missing, presumed dead. I usually stayed with her when I visited Paris because I didn't have to pay and because her welcome was always gracious.
That evening I was even more in a flutter than her, although I tried not to show it. I had never met a HIV person before and I wondered how I was to behave. I would undoubtedly shake his hand, casually, as if nothing were the matter. After that I would probably sneak into the bathroom and wash!
I don't remember much of the conversation that took place that eventful evening, but Jean and Michel were very likeable people. Jean was a painter and I don't recall what Michel did. Jean didn't drink any wine over dinner and I assumed he was being medically prudent. I wondered whether he might even have ten years left to him if he were careful. Suzi and I were both voyeurs without consciously wishing to be, but we meant well and wanted to do the right thing. In the mid 1980s it was probably daring to have dinner with someone with the virus, something akin to sitting across a table with a cobra. I was also aware of some sorrow in me from the knowledge that the man was probably doomed to an early death for no grievous fault of his.
Over the years I have wondered how I would react if I had caught the virus. Would I keep it a secret? Or, if I were to disclose it, would I tell a lie and say that I caught it at the dentists, or through infected blood transfusion? Contracting it through sexual intercourse is perceived as utterly dishonourable in our cultural milieu. In the recent past it has been rumoured that a few Indian public figures died of the virus concealing the real nature of their illness. The founder of a well-known public charity for children, by all accounts a man of extraordinary courage and compassion, died of AIDS. The organisation decided to keep it from the public for fear it would adversely affect its mission. In the West, there is more understanding: the French intellectual Michel Foucault, the American actor Rock Hudson and the basketball player Magic Johnson are some well known figures who admitted to the illness. Their courage helped millions of people to be less condemnatory and more considerate.
The more we dissemble behind a façade of propriety, the more difficult it is to deal with the pandemic. In the big cities of South Africa, one out of four adults is infected. A large percentage of the babies born in Nairobi's hospitals are also condemned to an early death. In south India, about one per cent of pregnant women attending antenatal clinics are found to be HIV positive. In the next decade many of us may witness friends and relatives dying of AIDS. Only an honest and caring attitude to the problem can help us continue the kind of public education required to check the spread of the disease and deal humanely with those who are afflicted.
A couple of years after the dinner in Paris, I was asked to present a paper at a big international conference on HIV AIDS in Chiang Mai, Thailand. I was not a specialist on the subject but I had begun to do some work on the cultural biases that prevented people from getting proper medical care. On that trip I visited a small AIDS monastery outside the city. Phra Phongthep, the Buddhist monk who ran the place, took care of those who had reached their last days. Emaciated and weak inmates, afflicted by a variety of opportunistic illnesses because their immune system had collapsed, were devotedly cared for by Phra Phongthep. He held their hands, caressed their brows and spoke tenderly to them, allowing them to die with dignity. Moved by his example, I spontaneously found the courage to hold the hands of a terminally ill patient.
In February this year I visited an AIDS prevention programme run by an intrepid team of women in Ullalu Upanagara, behind Bangalore University. Nirmala, Sandrila, Sudha and several other women worked in this slum community. They objected to my referring to Ullalu as a slum. "This is a community of flesh and blood people, like people in any neighbourhood," they insisted. To them the word "slum" was derogatory. I had been to Ullalu a few times before and accompanied them on house visits and counselling sessions. But this time round I was going to meet Neelamma, a 24-year-old woman who was HIV positive.
Neelamma was a dusky beauty who, far from being dejected and hopeless, appeared to be bright and beaming. My first impression of her was disappointing. She wore a red blouse and a flaming orange sari. Gold earrings danced from her lobes and another ring shone from her nose. Pearly white teeth sparkled like a toothpaste ad. I was probably disappointed at what I saw due to a not uncommon male propensity to feel tenderly towards a helpless woman and be moved by her vulnerability. Neelamma didn't satisfy this half-unconscious need.
Nirmala, the local coordinator of the Gram Swaraj Samithi (GSS) AIDS prevention programme, told me that Neelamma's husband Ramiah had attended one of their weekly counselling sessions a few months earlier. He had returned the next week as well. This time he remarked: "You say that the HIV virus is contracted through casual sexual contact. But men are drawn to women because women try to seduce them!"
"If you are not faithful to your partner or do not practise safe sex, you may be at risk," Nirmala had replied, skirting his opinion. (I wondered at Nirmala's advice. Was there a cultural dissonance between the first part about being faithful to one's partner and the second part, presumably about practising safe sex outside marriage? The dread of HIV AIDS was softening our traditional public morality, appearing to say: if you are in any case going to sleep around don't forget your condom!)
Speaking of condoms, I am reminded of what Sudha, the coordinator of GSS recounted to me recently. Sudha's team distributed free condoms to families in Ulallu Upangara as part of the AIDS awareness drive. One man who used a condom ended up in agony because his wife had inadvertently stored the condoms in a tin of chilli powder! There is always the macabre and the ludicrous in the most passionate of situations.
Neelamma's husband came to meet Nirmala a few days later looking lean and emaciated. He was a head-load worker, but was now not strong enough to work. "I seem to have a problem,'' he said, "but I don't want to talk to you. I want to speak to the doctor." Nirmala told him that the doctor visited only twice a week and he was not going to be there that day. "You can talk to me," she said, "just forget I am a woman. See me as a health worker."
Ramiah was too weak to protest. "I have a lesion on my testicle that is not healing. But please don't tell anybody. Especially my wife."
Nirmala insisted that he would have to take his wife into confidence if he cared about her and did not want to infect her. She then took him to Victoria hospital where the doctor dismissed it as a minor problem and prescribed tablets and an ointment. But over the next week Ramiah got worse and the vomiting and the diarrhoea, which he had concealed from Nirmala, got worse. Meanwhile, Neelamma had run out of money. It was impossible for her to feed her two young children and take care of her husband's medical bills with the thousand rupees she earned each month working in a garment factory.
Thankfully Ramiah's brother came from Channapatna and seeing the gravity of his brother's condition, decided to take him back with him. Neelamma accompanied them, leaving her children with a relative. In Channapatna they went from doctor to doctor until the local government hospital proposed a HIV test. It proved to be positive and when Ramiah was told, he broke down crying. Nobody disclosed the news to Neelamma although she wondered why her husband was so distraught. From the grim mood all around, she could tell it was serious.
After he was diagnosed as a full-blown <147,1,0>AIDS case, no clinic in Channapatna would admit him. He was taken to his parents' home in the same town and Neelamma continued to nurse him. One day his brother came and broke the news to her, but it took a few days to sink in. Someone suggested that she might be infected as well. What was painful to accept was the hint from Ramiah's relatives that she might have passed it on to him. They were trying to defend the honour of Ramiah by painting her as the villain. Not only did she bathe, cook and feed him but she also had to face the veiled barbs from her husband's family. She finally asked her husband how he had got the virus. "Why do you ask?'' he said in a dejected voice. "It's happened now. What's the use of asking?" "What do you mean? You owe me an explanation. You have destroyed my life and our children's future," she said.
At the time Neelamma did not know that she was infected herself. But later when she went to the government hospital, she tested positive. On hearing the news, Ramiah was deeply upset as well but he didn't have too long to agonise. One morning, a couple of days later, he begun to sweat profusely and came out of the hut to sit at the door. The neighbours sensed the end had come and suggested that Neelamma give him a glass of milk to drink, a propitious ritual before death. Ramiah took only a couple of sips from the glass before his frail body slid to the ground.
In recent weeks, GSS has learned that the younger child, a son, has also tested HIV positive, although Neelamma has not yet been told. The older child has still to take the test. Meanwhile, Neelamma has developed tuberculosis, one of the common illnesses that a HIV positive patient catches. Inevitably, questions surge to the mind even if there are no quick answers: How long does she have to live? Will her little boy outlive her? Is the older girl also infected? Although not all HIV positive cases end up with full blown AIDS, there are worrying signs that Neelamma may not escape the fate of her husband. Only time can tell.
Neelamma is one among five million or so HIV afflicted people in India. One report states that 30 million lives are at risk in the country over the next five to ten years and perhaps 200 million over the following decade. These figures are nothing short of staggering and should serve as a wake-up call. It is also a warning that we must abstain from what Susan Sontag has so eloquently condemned: the portrayal of AIDS as a plague, a punishment for one's retrograde life. AIDS is part of our human condition today, urging us to be more supportive and thoughtful to those who suffer from it. Tomorrow it could be you or me; or a brother, sister, parent or friend; and one can catch it from the usual human activities: mainly unprotected sex, but also from a hospital syringe, from blood transfusions, a dentist's un-sterilised drill or a barber's scissor.
I asked Neelamma if she was afraid of dying. My question was direct and possibly cruel. Her eyes immediately brimmed with tears. For a minute she struggled with her emotions and I realised that behind her gaiety lay a very fragile young woman; the verve and laughter were possibly coping mechanisms. Before she could answer, her little boy came running in and I took the opportunity to change the subject. "What a bright little boy you have!" I said. Her tears were gone and she beamed with pride.
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