Aids: Untold Stories from India - Hardcover

Negar Akhavi

Hardcover

ISBN 10: 8184000391 ISBN 13: 9788184000399

Publisher: Random House, 2008

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The Bill & Melinda Gates Foundation is the largest transparently operated charitable foundation in the world, founded by Bill and Melinda Gates in 2000 and doubled in size by Warren Buffett in 2006. The primary aims of the foundation are, globally, to enhance healthcare and reduce extreme poverty, and, in the United States, to expand educational opportunities and access to information technology.

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MISTER X VERSUS HOSPITAL YNikita LalwaniI am with him in his workspace, a narrow box of a room, as he talks. The room is clean, fresh and comforting; controlled, yet welcoming. As there are very few objects in the room, I wonder if these defining characteristics are coming from Toku himself. He is seated at his desk in the corner, a doctor in his early forties, of northeast Indian origin, with very clear skin the colour of light pine, high cheek-boned, hair arranged with a tidy side parting, silver-framed spectacles. His face, which has a certain 'do not disturb' quality at rest, creases confusingly with the very opposite quality when he smiles.'People call me Toku,' he says, when I refer to him as Dr. Tokugha.There is a knock behind me. I get up quickly to allow the door to open-my chair, by his desk, takes up most of the free space in the room. Toku engages warmly with the patient who enters-a slight, quiet man in his thirties with patchy white bristle on his cheeks, dressed in a dark work shirt and slacks that roll up to reveal bare feet. They speak in Tamil, but I can sense that they are talking about medicine and treatment. The phrases 'three times a day' and 'after food only' form part of the conversation. As the patient leaves, Toku gets up to follow him out.'Be comfortable,' he says, noting my nervous, slightly tense posture. 'Be my guest.'He flashes a modest smile of impressive teeth before exiting. I look around the room for more clues. To my right, a makeshift bed has been formed from a sheet and pillow laid on top of a chest of drawers. On the wall is a poster for a twenty second general conference of some kind, entitled 'Enduring Beyond'. The image is of a warrior ready for battle. Above that, a few trophies in a glass cage. To their left, a picture of a park in eighties film colours heightened greens and flushed fuchsia blooms. 'God Bless You' is inscribed on a wooden plaque on the top shelf, below a rusty air cooler, set into the wall, which touches the ceiling. A Bugs Bunny peg near the door, for a coat. A sink, with Dettol handwash at the back. His name written in faded gold on a thin length of wood by the computer.What am I looking for? I am confused by my desire to document these objects. Why do I imagine that I can find something intimate in them? Maybe it is because Toku seems so contained that it is difficult to imagine that our meeting is going to reveal anything that has not already been written down somewhere, by someone else. I think of the newspaper cuttings that I have seen, in which his story was appropriated and printed without his consent. I think of the case study I have received from the Lawyers Collective in Delhi, in which the ramifications of his battle for justice are meticulously detailed.'How can I help you?' he asks when he returns.I decide to be as straightforward as possible. It is the only way to avoid the fudge of possible meanings.'How did you discover that you were HIV positive? What was it like, the… discovery?'The words come out of my mouth, and I feel their inadequacy. They are too vulgar, hanging in the air without context, like underwear on a washing line. We look at each other. We both know that Toku's story is out of the ordinary. That he has suffered key abuses of the kinds of human rights that many of us take for granted, most notably the loss of privacy. I am, of course, part of the fallout from those abuses. I know his public story. That is why I am here, trying to understand his private space.'First of all, I need to tell you something,' says Toku.I nod.'I have a very painful tooth. I have had three root canal operations. I am disheartened. So I may not be in the mood to talk. I may feel, how to put it… withdrawn.'I nod again. Of course. 'It is understandable,' I mumble. 'The root canal is a very tender and exposing operation, isn't it?''But this is how it was…'And then, just like that, Toku begins at the beginning, and tells me exactly what it was like.'In 1995 I used to work in a Nagaland hospital as an eye consultant. It was the biggest hospital in the state. My father was the village headman, I had finished my studies and was an eligible bachelor. Everyone has to settle down, and it was time. I'm forty two now, then I was thirty. A few suggestions were made to me, and I had a couple of ideas myself. Then I proposed to a girl.''So, would you say it was arranged?' I ask. 'Not really,' he replies. He met her three or four times, and decided to propose. He liked her. His family was also keen for the match. His brother-in-law, his cousin's husband, especially encouraged it-he was a government minister, just like the girl's uncle. They set a date for the wedding to take place just weeks after the engagement.'I made a trip with my fiancée and her mother to get the wedding dress stitched. They wanted to go to Hong Kong or Bangkok. The marriage was the big talk of the town, you see. In the end, we decided on Kolkata. We commissioned the dress-both being Christian, it was a long white dress with a veil-and two weeks later I went back to pick it up along with the invitation cards. I got it in a closed box-the tailor said it was very important that I did not see the dress before the wedding, I remember that.''Did you look at the dress?' I ask. 'No,' he replies, smiling. He knew not to do that.'I flew back to Nagaland, and descended from the plane. Normally, if I returned from a trip, quite a few family members would come to pick me up from the airport-come along for the ride, help with the luggage. This time it was just my sister. As I approached her, I could see she was very sad.'Toku lists the fears that entered his head. They are the same worries that haunt us all when away from loved ones: mostly touching upon the vacuum of unexpected deaths. His mother? His fiancée? A car accident? But his sister would not reveal anything on the journey home.'I arrived at the house to see all of my family assembled there, maybe twenty people. My brother stood up in the centre of the room and said, “Your wedding has been called off because you have AIDS.”'He smiles again, and pauses for me to laugh out loud, should I feel like it. The drama of the scene is both chilling and faintly absurd.'That is how I found out.'Six months prior to this, Toku had travelled with his brother-in-law, the minister, to Chennai to help him organize an operation. His brother-in-law's uncle was ill and needed to get to a large hospital, for the treatment of his abdomen. Toku discovered that the patient needed major surgery, and a blood transfusion. They needed a donor urgently, and so he volunteered to give his own blood.'I didn't know whether it would be the right blood type, but I said “Look, I will give my own blood.” I don't know whether they used it, but I stayed for the whole thing and went into the operation theatre with him. I was very pleased that the surgery was successful. The minister left and I stayed back to help with the aftercare-remove the sutures of the patient, keep an eye on him.'Toku has become more agitated. He speaks quickly now, leaning forward in his chair.'The doctors there ran tests on my blood and found that I was HIV positive. But they disclosed my HIV status to the minister, my brother-in-law, instead of to me. And then, he chose not to disclose it to me until six months later. After encouraging me to get engaged and helping me decide on marriage, he waited till the day I returned with the wedding dress and gathered everyone I knew, to make the announcement.'When he went back to the hospital to confirm the rumours, Toku says he was treated with disdain by the doctor who tested him. He was told that he would die soon, that there was no cure, and was asked to leave the room after a few brief questions about his sexual behaviour. He tried to find someone in the hospital who could tell him how the information had been leaked, but no one would give him an appointment, or listen. Finding himself on the other side of the doctor-patient divide, and with a disease that aroused disgust and moral judgement in his wider circle, Toku lost his voice overnight.'I had many thoughts on my mind. I will die soon. How will I face my father? What about the shame? Of course, I withdrew from the wedding myself. After checking the results with another test, I told my fiancée that we had to call it off. She cried. I was in shock. Everyone knew. But it should have been my decision. I would not have searched for a girl and proposed if I had known. Why did the hospital tell the minister, and not me? This was a breach of confidence. And that it was my brother-in-law. I donated my own blood for his uncle-I gave my own blood for him.'I ask if he knows the reason behind the betrayal. He shakes his head. Even now, 12 years later, Toku says he is not going to dig it up. He has his suspicions. It could have had to do with his brother-in-law's career, rivalry with his fiancée's family, who knows? But his brother-in-law's betrayal is irrelevant compared to the actions of the hospital which disclosed his secret.'With AIDS, there was such a stigma then. People didn't understand the issues. He was a big minister, but I had just become someone with AIDS. Who was going to listen to me? They all knew my status in Nagaland.'I nod. Sitting in his office, and listening to him, it is difficult to imagine Toku commanding anything other than respectful attention. But it is a reminder of what we are doing here together, a small paper cut of sharp feeling when it comes to thinking about how we name and identify each other with regard to this particular illness. He is talking about something that happened a decade ago, but of course I have asked him to tell me his story because he is HIV positive.Whenever he uses the word 'status' to refer to the result of the blood test, it feels so collapsible as a word. In effect, because of how he has told the story, I have an idea of his 'status' in society before he found out that his blood was marked in this way. He has used the same short cut signs and signifiers most of us use-his vocation, age, location, familial background, the impending union wit...

About this edition

• Publisher: Random House
• Publication date: 2008
• ISBN 10: 8184000391
• ISBN 13: 9788184000399
• Binding: Hardcover
• Language: English
• Number of pages: 334