Thursday, 15 March 2012

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The tragedies and triumphs of living with HIV/AIDS

Some experiences of HIV-positive people are horribly negative – young children abandoned by families, old men left to die on rubbish heaps – but thanks to better treatment options and public information, there are also stories of lives lived fruitfully and with courage. Shabnam Minwalla reviews three books that tell these stories

HIV/AIDS positive lives

“I have a successful career. I enjoy music. I like to work out at the gym. I miss my flights sometimes. I am also-HIV positive for the last 11 years.” 

So states a bright, upbeat poster that describes Ashok Pillai, a radio operator in the Indian Navy, 13 years after he tested positive for HIV. The poster is part of a campaign to boost the courage of people living with HIV. Despite the doctor’s brutal words on that devastating day in Pune giving him “just two more years”, Ashok refused to give up on life. And although he experienced black periods of shame and self-pity, was shunned by his best friends and lost his job, he still managed to smile, joke and hold on to his resolve: to live every day to the fullest. 

Ashok is just one of the people living with HIV whose stories unfold in Positive Lives, a book by Kalpana Jain, and Hopes Alive, a new book by Patralekha Chatterjee. Many of the accounts—of frail grandmothers left to fend for a brood of HIV-positive children; of a sick man banished by his landlord and left to die on a rubbish heap; of young children in care homes who watch their friends die and stoically accept that this is their fate as well—are nightmarish. For when HIV strikes people who are already crippled by poverty and ignorance, death comes swiftly and mercilessly. But there are an astonishing number of people who, despite their HIV-positive status, are living brave and productive lives. 

Strangely, the enormous tragedies and small triumphs of life after HIV have barely been recorded in India. Articles on the disease usually focus on NGO interventions, ineffectual government policies and tussles over statistics. So the few books that explain what HIV/AIDS does to families and communities offer valuable insights and reveal a silent trend. “Lately AIDS is getting to be as much about living as it has been about dying,” writes Jain, who crisscrossed the country in 2002 in an attempt to understand the impact of the virus. “In fact, a year of looking closely at the HIV/AIDS epidemic lifted some of the gloom I had felt while interacting with young infected people earlier. Countless young men and women, over the years, have learnt to conquer their fear of HIV, even as scientists desperately search for a cure to this fatal infection.” 

Hopes Alive: Surviving AIDS and Despair, a book that was released earlier this year and focuses on the work of FXB India Suraksha (the Indian offshoot of the Geneva-based NGO), describes similar tales of strength and survival.  States the author, Patralekha Chatterjee, “The take-away message in all these tales is that it is possible to change the narrative of children impacted by AIDS in this country.” 

This was certainly not the case even a decade ago. In 1999, Siddharth Dube travelled around India, meeting people whose lives had been destroyed by the HIV virus. In his book Sex, Lies and AIDS he wrote about 12 of those encounters—each of which was suffused with despair and hopelessness. From the emaciated pavement dweller to the once prosperous garment manufacturer to the resigned housemaid, they all seemed to be waiting for death. “I know I will die soon,” they reiterated tiredly.

Dube tells the story of 29-year-old Gayatri Navalkar, a former sales representative. The skeletal young woman, almost too weak to talk, lay hopelessly in her Santa Cruz house.  The private clinic that made the diagnosis had thrown her out and dubbed her a “prostitute” who would “die for her sins”. Ever since news of her illness had spread the utterly respectable Navalkar family had been treated like pariahs by their neighbours and taunted by colleagues. Even worse, Gayatri’s brother left Mumbai with his wife and children and cut off all ties with his parents. “The Navalkars were ruined both financially and in spirit by the cost of her medicines, by caring for her and by facing the hatred that still emanated from almost all their neighbours every day,” writes Dube. 

Much, however, has changed in the world of HIV/AIDS in the intervening 10 years. Drugs have become more effective and accessible. People living with HIV/AIDS are better aware of their rights and are able to demand privacy and a modicum of dignity. Cash-rich NGOs across the country have made an impact—especially those that address long-term issues like income generation for patients who have lost their jobs.  

Also, the rapidly growing networks of people living with HIV offer examples of survivors like Ashok Pillai, Rama Pandian and Kousalya in Positive Lives.  For they have successfully confronted the inevitable hurdles—dealing with their initial shame or sense of betrayal; imparting the terrible news to their families; seeking acceptance and forgiveness; clinging onto their jobs or seeking alternative livelihoods. “They have set a fine example for anyone with HIV to follow, to learn how life can go on,” asserts Jain. “Each of them has been able to extend this desire to live to those who come in contact with them.” 

Kousalya was just 20 and had only recently gotten married to a truck-driver from Namakkal when she realised that her husband was HIV-positive—a fact he had hidden before their marriage. Infuriated by his deception, she walked out on her husband, returned to her uncle’s house and became acquainted with two other women in the area who were living with HIV. “This gave her strength. Gradually she set up the first self-help group, for positive women only, in October 1998,” writes Jain, adding that the group helped women to share experiences and basic information about hostels, orphanages and care homes. 

Rama Pandian was a lab technician in a Chennai hospital where he donated blood every six months. After a routine donation in 1992, he was told that he had tested positive for HIV. Within days he had been thrown out from his job. “Where do you go for sex? What kind of family have you been brought up in?” the hospital bigwigs yelled at that terrible final meeting. “Please leave the hospital. We do not want you around.”  

Over the next few years, Rama set up a network of positive people. But it was only in 1997 that he plucked up the courage to tell his family about his illness. His parents had arranged a marriage for him and were eagerly waiting for him in Salem. Rama felt very depressed, but two days into his visit, he sat his family down, switched on a tape recorder and told them the most important fact about his life. “For the remaining days of his stay, Rama was served food by his ailing father, something he had never done,” writes Jain. “Perhaps this was his way of showing his deep love and affection for his son. Or perhaps he wanted to treasure every moment of Rama’s stay there.”  

Abraham Kurien, an instructor in the Army, was not so fortunate. His family became cold and distant when he told them that he had tested positive for HIV. But he shared a close bond with his landlord—an old man whom he called dadaji—who saw no reason to shun the young man he affectionately called “son” and kept reminding him that “every minute one was alive should be spent well”. 

The support and unconditional acceptance—which lucky individuals like Rama and Ashok have received from their families—do as much as any medicine to bolster the health of people living with HIV. “The right care and adequate love makes patients live longer lives,” asserts Jain, adding that those who are stigmatised and shunned have little strength left to battle the infection.   

Emotional support apart, however, practical support is also essential if lives are to carry on. Employers are still scared of HIV/AIDS and many people lose their jobs merely because they have tested positive. But an increasing number of NGOs are attempting to restore order to disrupted lives. 

Take the case of 32-year-old Lalmalsawma, who in 2007 started to fall sick. Tests revealed that both he and his wife were HIV-positive. His employer soon dismissed him; his four children had to stop attending school and the family found itself homeless in the midst of the rainy season.  It was at this point that FXB stepped in and helped build a small house where the family both lived and operated a tea-stall that soon started yielding Rs 400 a day. “I thought my life was over when I discovered that I was HIV-positive,” Lalmalsawma recounted in Hopes Alive. “Now I can go to sleep in peace.” 

Like Lalmalsawma’s children in Aizawl, Jayaprada’s daughter in Vishakapatnam is able to attend school thanks to NGO intervention. Jayaprada’s parents arranged her marriage with a truck driver who tested positive for HIV around the same time that she delivered her daughter. Her in-laws accused her of being the “guilty party” and forced her to leave the house after her husband died. Then she found that she too was infected. It was at this terrible juncture that FXB intervened—and today the gutsy 25-year-old is training to be a tailor. 

Like Jayaprada, thousands of people across the country who are daring to dream again. In Hopes Alive, there is a moving photograph that shows seven young and pretty women in Imphal—most of them widows living with HIV—at a shoe-making class. All of them are watching with rapt attention as the instructor demonstrates the techniques involved in making candy pink slippers and peppermint green sandals.  Nothing—neither the worries that overwhelm their lives, nor the camera’s flash—distracts them from the task at hand. For, they are concentrating on the future that they are absolutely determined to have.

Positive Lives by Kalpana Jain is published by Penguin, price Rs 250. Hopes Alive: Surviving AIDS and Despair by Patralekha Chatterjee is published by FXB India Suraksha, price 250, and Sex, Lies and AIDS by Siddharth Dube is published by Harper Collins, price Rs 195

(Shabnam Minwalla is a former senior assistant editor with Times of India and has written extensively on health and education) 

InfoChange News & Features, July 2009

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