A brief journey (UNHEARD VOICES/HERSH MANDER/FRONTLINE MAGAZINE)

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. 

http://www.flonnet.com/fl1911/19110880.htm

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. 
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