AIDS Sutra: Untold Stories from India Paperback - 2008

Excerpt

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 with another person and their family. After the revelation of the blood test, in this narrative of his life, just as in the hospital where he supervised an operation, those indicators become irrelevant-he becomes a man whose whole status is HIV positive, and nothing else. Even now, as he talks, he seems aware of this fact. He is a little louder, more insistent than before, as though the danger of being dismissed is never gone once the labels come out of the bag.'Then it begins. I can't sleep, nothing. They all know my status in Nagaland. And there is such a stigma, so much shame; I know I have to leave there. I don't have my job any more. People are criticising me. Then I start thinking I want to disappear. I think it is very difficult to disappear. I start to question myself-how to disappear.'He closes his eyes and frowns almost indiscernibly.'I think, is it a dream? I pinch myself.'Silence.He opens his eyes and presents the impossible nature of the question to me, throwing his hands into the air with sudden vehemence.'How to disappear? How is it possible to disappear? I think maybe I'll go to the jungle, live there, or go to another state and live quietly. But if people know I am a doctor, they will wonder why I am so quiet, with no ties. They will find out, and I will have to leave again. I thought maybe I would go to Nepal; help people who have no hospitals. But then I would need a visa, medical tests-it becomes difficult. Where to hide?'There is an impasse between us. It is as though he genuinely wants an answer to the question, and I am with him, trying to imagine how I would act if thrust so suddenly into such a fugitive skin. Having been silenced internally, I would of course, like him, want to erase my outer, visible self-it would be a matter of survival.He registers my stasis and laughs, urging me to join him.'It is not so easy to disappear, you know?' he says.I concur. My chest feels tight. No, it is not so easy to disappear.Anand Grover, the lawyer who sent me to meet Toku, has likened human rights to the green leaves on a tree:If a fire is lit in the forest, which of the trees will catch fire and perish? Obviously, the one without the green leaves. The one with the green leaves, with the rights, will survive. Those without rights are therefore most vulnerable.Grover, who met Toku in 1996, has been at the centre of the battle for human rights for people affected by HIV, for the past two decades. A charismatic and provocative man, known for being fearlessly outspoken on issues of personal freedom, Grover is one of the directors of the Lawyers Collective, a group of legal professionals and activists, who donate their time together in the form of legal aid and lobbying for legal reform. Much of the work of their HIV/AIDS unit centres on marginalised groups-women who are evicted from their family home, or separated from their children when discovered to be HIV positive, drug users, sex workers, and the large number of positive people who are impoverished-having very little money and, therefore, very little access to treatment, information, or the courts.After confirming his HIV status, Toku stayed in Chennai without knowing how or what he would do to survive. He met with an old college friend, who expected him to be on his honeymoon.

Media reviews

“An intelligent, often compelling collection of essays by noted Indian writers, demonstrates that workers on the subcontinent dealing with the disease often confront similar problems.... This important book should be read...not just by physicians, health officials and members of nongovernmental organizations but by any compassionate reader.” -Los Angeles Times “Provides a uniquely intimate glimpse into a disease that is either sterilized by statistics or ignored altogether.” -Time “Finely observed.” -The Economist “What better way to give a voice to the 2.7 million people in India living with HIV/AIDS than to enlist the country's top authors to tell their stories?” -Reuters “The range of essays is truly impressive.” -BBC News (online) “The writers here offset the numbing anonymity of numbers with portraits of stunning particularity.... The writing in the anthology is by turns tortured and beautiful as [they] show us the people behind stereotypes.” -The Wall Street Journal “A cautionary volume that stresses the need to educate, treat, and create jobs.... A forward by Nobelist Amartya Sen and an introduction by Bill and Melinda Gates both argue that we must cease stigmatizing and blaming hapless victims if we are to find real solutions.” -Kirkus Reviews“Sixteen writers, including Salman Rushdie, spotlight the normally hidden crisis of AIDS in India.... Prashant Panjir's poignant accompanying photographs sound another powerful wake-up call to the global health community and beyond.” -Booklist “These 'untold stories from India' humanize the tragedy.... The book succeeds because it is not sentimental: the writers respect the victims, admire their courage. With humility, expatriates make the arcane accessible. Those based in India have a refreshing candor.” -The Independent (London) “Absorbing.... Lately, press accounts of India have tended to focus on lavish billionaires, burgeoning tourism, powerhouse firms like Infosys.... AIDS SUTRA presents a different India, an India in which grinding poverty and sexual taboos combine with sanctimony and ignorance to fuel the spread of HIV.” -The National “The challenge of conveying extreme suffering without sentimentalising, sensationalising or simplifying is met in this collection of wide-ranging voices, both emotive and meditative.... The anthology-published in collaboration with Avahan, the India Aids Initiative of the Bill & Melinda Gates Foundation-shows how storytelling can help create life-saving 'fellow-feeling'.” -The Guardian “For all that India tries to present to the world the shiny face of a modern technologic giant, judging by what you read in AIDS SUTRA when it comes to sexuality it's stuck in the dark ages.... Heartbreaking.” -Blogcritics magazine “Every once in a while, you pick up a book that will change the way you look at the world. This is the intersection of writing and reading at its very best.... Extraordinary.... Without exception, these essays are superb.” -Armchair Interviews “The need for societal responsibility is further emphasized by the varying geographical and socio-economic demographics of the individuals discussed in AIDS SUTRA. ” -India Currents, The Complete Indian American Magazine “Eye-opening, hard-hitting and moving.” -Hindustan Times “Raw, intense, and heartbreaking. Ordinary characters who are living with HIV across India achieve a heightened state of humanity, and epic complexities.... An eye-opener; it dispels and looks beyond the many myths that surround the disease.” -MINT “AIDS SUTRA has brought together a galaxy of some of the best-known writers.... The mastery the writers have over their art enables them to tell the story of this 'side to India rarely seen before' with empathy and compassion.” -India Together “AIDS SUTRA: Untold Stories from India might as well have been subtitled 'Whatever You Thought, Think Again,' because this disturbing and brilliant collection of prose takes everything you thought you knew about India, grinds it all up into a bitter masala and makes you gag while drinking it all down.” -PopMatters “[A]n important, moving, and transformative read. Each story is relatively brief and gives a taste of the authors' diverse and prolific literary talents. ” -The South Asian Women's Network “The variety of authors included, and the topics they choose to focus on, is remarkable. ” -Playback: stl

Citations

• Kirkus Reviews, 10/01/2008, Page 1043
• Library Journal, 09/15/2008, Page 77