A brief journey

The saga of Sushila's struggle with AIDS captures the essence of the untold stories of scores of women whose voices have perhaps been lost forever.

SUSHILA'S brothers did not want to send her so far away. But she was growing older, and the prospective bridegroom John, a Goan truck driver, seemed eligible - he was soft-spoken and earned well. He said that he lived alone in his home in Mumbai and assured her brothers that she would be happy with him. Initially, the wedding proposal included a demand for dowry. But Sushila spiritedly opposed this, and ultimately John agreed to accept her without it.

The marriage was fixed, and seven years ago, in a modest Bangalore church, Sushila's life was tied to John's. Irrevocably, as it turned out, in many ways, both anticipated and unanticipated.

When this proposal first came for Sushila, the youngest of five sisters and brothers in a conservative Catholic family in a village close to Bangalore, the family had debated it for a long time. Her father had died only months earlier, and her elder brothers were concerned and protective about her future. One brother worked as a clerk in an office. The other had become an evangelist after chequered years in the army, some worrying months of heavy drinking, and an unsuccessful experiment in running a furniture store. The brothers lived together, with their families. They were strict with their sisters, and did not allow them even to talk to their own male friends who visited their home. One sister became a nun and was in Bihar; another was married and had two children. Now only Sushila remained.

The first shock came when she arrived at her husband's home in Mumbai, just days after their marriage. He had lied to her; he did not live alone. In a small shanty in a sprawling Mumbai slum, John lived with two unmarried brothers and a divorced sister. The next morning itself, he set off on his truck without a word to her, and returned only 15 days later. But this was barely for one or two nights, before he was on the road again.

John's family had grown up in the big city, and their ways were very different from those that Sushila had been used to. They would think nothing of visiting tea stalls and the cinema, or talking in the rough, coarse, open way of the city streets. Sushila was desperately lonely and missed the protected world of her family and village. But who was there to speak to? Her husband was rarely home.

Sushila returned to her brothers' home in Bangalore when she became pregnant. The child was still-born, and the doctors said that she had contracted some venereal disease from her husband. The miscarriage left her critically ill, and her brothers gave money and blood to save her life. Her husband was hundreds of kilometres away, driving his truck, oblivious of all this. When he returned a whole month later and asked 'where is my child', Sushila was furious with him - for causing the infection, for not caring and for not being there when she needed him most - and she cried out loud and long. Her brothers persuaded John to stay back with them in Bangalore and to give up driving his truck. He agreed, and they found him some work in Bangalore itself. For Sushila, this was the happiest phase of her married life. But it did not last long. One day, only weeks afterwards, he disappeared without warning. Two months later, he returned with his truck, and demanded that Sushila go back to Mumbai with him. Her brothers tried to dissuade her, but she did not want to remain dependent on them. She returned tearfully to her husband's home.

He promised to take better care of her this time. The reason for his long absences, he told her, was that he was not a licensed driver and therefore his employers and the police could harass and exploit him. He persuaded her to sell her gold chain, a gift from her family when she was married. He said that he needed the money to pay bribes in order to acquire a bus driver's badge, and he started driving a passenger bus between Mumbai and Goa.

Sushila began to see him more regularly. She soon became pregnant again. The child, born in her uncles' care in Bangalore, was a healthy baby girl. Labour was prolonged and painful, and in the end the doctors in the government hospital took recourse to a caesarean section.

By the time Sushila returned to Mumbai with her daughter, John had quit his regular job on the Mumbai-Goa bus and was back to driving his truck across the length and breadth of the country. His absences became longer and more uncertain, and in time her unmarried older brother-in-law took to harassing her sexually. Sushila once pushed him down the broken staircase, and he broke his leg. She complained to her husband, but he refused to intervene.

Before long, she was pregnant once again. This time, they refused to send her to her brothers' home. After the fifth month, she felt weak and sickly, and her digestion gave her a lot of trouble. She was admitted into a government hospital in Mumbai, but for the most part, was left to take care of herself.

As her condition did not improve, the doctors ordered a series of tests. Days later, a nurse brusquely and abruptly told her something that was to change her life. She had tested positive for the Human Immunodeficiency Virus, or HIV.

She was immediately shifted to a corner of the general ward, and the entire hospital staff hardly ever came close to her. At that time Sushila did not know fully what HIV and the Acquired Immunodeficiency Virus (AIDS) meant, although she recalled a programme that she had watched years earlier on television, and knew that it was a deadly disease. A woman in a neighbouring bed explained to her more fully what it was. It sounded to her like a death warrant. One day, her husband came to see her. She did not tell him, only wept unendingly, out of despair and seething, impotent anger.

A sickly son was born to her this time, again by caesarean section. She did not know why, but she became obsessed with the idea that the doctors would kill her child. She shouted hysterically and the doctors discharged her into the care of her husband's family, saying that she had gone mad. Her husband, on his next visit to Mumbai, rang up her brothers in Bangalore and said that she was possessed by a devil and that they should take her home.

Her brothers came to see her, and she returned with them to Bangalore. Sushila hid her terrible secret for a while, but the burden of a bleak uncertain future weighed too heavily on her heart. In time, she shared with them the terrible news that the nurse in the government hospital had broken to her - about her infection with HIV. They heard her out in silence, and did not turn her away, as she had feared. But she noticed that they began to keep a careful distance from her. Their families were not allowed to come close to her. Sushila fell into a deep depression, and wished for death. It was only the thought of her two defenceless children that still bound her tightly to life, although with a slender, frayed string.

Her brothers insisted on getting her children also tested for HIV. The infection of parents can be passed on to children, they told her. Her daughter was found to be safe, but her son, the doctors said, probably carried the malady of his mother. She held the little boy closer to her breast, as her brothers became more tense, worried and distant.

When her husband came to visit them, Sushila begged him to get himself tested. But he was nonchalant. It was a disorder caused by the heat, he said. However, by now Sushila knew enough to be sure that John was the source of her own infection and that of her son. Her sister, the nun, was in Bangalore on vacation, and it was she who educated her. One of her brothers, meanwhile, read in a magazine called Sudha about an organisation in Bangalore, which gave shelter to people living with HIV. It was called Freedom Foundation. Her brothers offered to take her there, with her husband and son. They said they would keep her daughter and bring her up like their own child. One day, they told Sushila, they would get her married as their own daughter.

John refused to go to the Foundation, and left Bangalore with his truck. Sushila walked with her son in her arms through the gates of the organisation and found a low set of buildings, mostly dormitories and a large dining and recreational space on a shaded green campus. There were other women and children and also men there, who were living with HIV, and in time Sushila felt less lonely. The residents shared in caring for her child, who rarely stopped crying. A counsellor spoke to her often. Live for your child even if you do not want to live for yourself. You have to make your son plump and strong, she would say.

Eight months later, John returned and said that he could not bear to live without his family. He threatened to take away his children forcibly, if she did not agree to return with him. The Foundation counsellor encouraged her to return to her family. She agreed on two conditions. The first was that she did not want to live in Mumbai, and the second was that he would have to leave their daughter behind with her brothers.

John agreed to both her demands, and hired a room for her and her son in Goa, instead of returning to Mumbai. But it just did not work out. He was away again for long stretches, without saying a word about when he would return. Moreover, he was erratic in his work, and constantly changed employers. He rarely gave her money, and drank heavily.

Their landlord and his wife took pity on the hapless young woman and her unendingly crying sickly son. She worked in their home, sweeping, washing and cooking, in return for the rent and food.

Occasionally they would advise her - leave your husband. What does he give you, that you should continue to hold his hand? But Sushila knew that one day he too would be sick and would need to be tended. She wanted then to be there for him. But whenever she tried to speak to John about AIDS, he would stop her. Thousands of people in Mumbai have AIDS, he would tell her. There is nothing to it. Eat well, live without tension, and all will be fine, he would say.

Sushila never told her landlords about her infection. It is within a web of lies that one is forced to live now - she sighed as she told us her story.

Her sickness returned - constant loose motion, fever, an aching tiredness that never left her - and she found that she did not have the energy to work or take care of her child. Unpaid rents mounted and the mother and son survived mainly on stale food from the landlord's kitchen.

ULTIMATELY she left Goa, and returned once again to her brothers' home. But she could see how unwelcome she was. One brother had a three-month old baby, and she could not blame them for wanting her to leave. She was grateful to them for having looked after her daughter - true to their word - as if she was their own child. She wished they would take in her son as well.

The only path that remained for her and her little boy once again led them to the Freedom Foundation. In its shaded enclave, among the austere rooms and open yards where the chickens pecked at grain amidst the overgrowth of weeds and wild grass, and in the company of other residents, all coping in their own way with HIV and AIDS, Sushila picked up the pieces of her life one more time. The last time we met her, it was her husband, at his wheel, and the son at her breast, who crowded her thoughts. She begged the doctors to test her son once again. It was a miracle. They found this time that her son was free from infection with HIV. Maybe they had made a mistake the first time.

She wrote to her brothers, telling them that her son was safe. If they agree to take him home with them, she would feel that life had not been too cruel to her. But if they do not...

Weeks after we met Sushila at the Freedom Foundation, she recovered and was discharged. She lived only a few days in her brother's home, before her pride drove her back to the care of her husband. This time, she took both her children with her.

However, within three months, painful sores, which refused to heal, broke out all over her body. A stubborn high fever racked her frame and she was unable to muster the energy to do even simple household chores or to look after her two children. The sores festered and seeped with pus, and she was in agony even when she tried to lie in bed.

Her husband informed her brothers and asked them to take care of her, but they insisted that he drop her off directly at the Freedom Foundation.

For the last time, she returned to the sanctuary of the Foundation. Soon maggots bred over her sores, and her two children took turns to remove these with a pair of tweezers. The Foundation doctors recognised this as a full-blown case of AIDS. Sushila knew that she did not have much longer to live, and begged the authorities to call her brothers to her bedside. They came, only to see their wasted sister dying for the last time. They assured her that both her daughter and son would grow up in their home in Tumkur like their own children. Within the darkness of her despair, she was assuaged.

On August 24, 2001, with her two children at her bedside, Sushila was finally released from her journey of suffering. Her brothers stood by their promise, and took legal custody of her two children.

John rarely visits them. When last heard of, he had started living with another woman.