Anuradha Nagaraj*
SANGLI, Nov 23 2005 (IPS) – The calendar on the dimly lit wall inside Sushila Patil s two-room home in Hanumantpur village screams out what may be going on inside her head every minute.
The two sentences in bold typeface say, There is a time gap between HIV and AIDS. So don t kill me with discrimination, I m still alive.
A determined group of HIV-positive men and women of Sangli district in India s Maharashtra state- region with the highest HIV/AIDS prevalence -repeats the lines to themselves at home everyday.
Most people think it is just about waiting to die, but I know it is all about wanting to live, says Sushila. In my village and in Sangli, people are beginning to understand that. But everywhere else, it is going to take a very long time.
Till the mid-1980s, Hanumantpur in the Sangli-Miraj region in south-west Maharashtra used to be known as mini-Paris and was famous for medical care and trade. It is now best known for its efforts to contain the spread of HIV/AIDS.
The town has a large number of doctors and laboratories and a large non-resident population. On an average, one man from every household works outside the district, and this mobility brings with it risky sexual behaviour.
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In Sangli district, two statistics show an increase- the number of people who can spew out facts and figures on HIV/AIDS and the number that have the infection.
The epidemic is spreading quite fast, says Meena Seshu of Sangram, a non-governmental organisation. What we are seeing today is the full impact of the epidemic on the general population. It is no longer just about targeted groups, but about housewives and children.
And in this small but relatively prosperous belt, while HIV/AIDS has almost become a way of life, many housewives like Sushila are coping with the infection.
Sushila, who has a post-graduate degree in Maratha history, was married in 1996. He husband worked at a sugar factory nearby and had promised her a great future and a secure home.
But the dream was shattered two years ago when her husband died, followed by her one-year-old son. Then, she was told of her own HIV-positive status.
More than my blood test results, it was the deceit that bothered me, she says. My husband had lied and so had his doctors. I kept asking all the right questions and got all the wrong answers.
Careful not to let despair dominate, she hurriedly smiles and begins talking about her best friend Shobha. Her story is a repeat of mine, Sushila says. Her husband died and she was in denial for very long, till I convinced her that she should get her test done.
Her friend turned out to be HIV-positive.
We have learnt to cope. We have also learnt to accept the fact that our husbands were unfaithful, she adds.
The two women meet at a neighbour s house everyday, share a cup of tea and chat with Laxmi, the lady of the house who treats both of them as her own daughters.
No one in my family has yet been diagnosed with HIV/AIDS, but I have seen many come and go, says Laxmi. We know all about the disease, from television and radio. We are not afraid.
What worries her most is the financial condition of her adopted daughters Sushila and Shobha. Sushila has two daughters who tested negative.
I have a post-graduate degree and am a qualified teacher, but it is almost impossible to find a job, Sushila sighs. Her only source of income is the two acres of land she owns and the money her brother loans her from time to time. I feel underutilised and unsure of my children s future, she says.
Ashok Satpude is a lonely man in the nearby Turchiphata village, which is slowly becoming a region of widows . He is also fighting a losing battle against HIV/AIDS.
Satpude is frail, his movements are slow, his eyes sunken. His spirit seems broken- possibly the outcome of having to cope with the virus while trying to ensure a secure future for his family, including his wife who is also HIV-positive.
I have sold one acre of land and have spent over Rs100,000 (2,220 US dollars) on medication, says Satpude. Now, I get treatment whenever I can afford it.
He adds that the disease does not scare him as much as its implications for the future of his family. I have seen almost 20 people in the village die over the past decade and I see their families struggle everyday, he says. I don t want that to happen to my sons or my wife.
Like so many men from the region, Satpude worked at a diamond polishing industry in Mumbai for 15 years. He left the village after completing grade eight and returned only to marry. He tested positive within a year of marriage.
Everyone makes a mistake, but this is a very heavy price to pay, especially for the family, he says. People like me, who work out of our homes for years, visit red-light areas. There was nothing like safer sex then.
Activists, well aware of the spread of the virus, have begun to shift to the caring mode from their initial efforts to spread awareness.
Surveillance is not being properly done, so figures will always be debatable, but in villages, every third household is affected, says Seshu. Antenatal care figures also indicate a very high prevalence.
Dr. S Gore runs a clinic opposite the sugar factory where Sushila s husband used to work. Many of his patients are former employees of the factory. What I see is the real picture. No statistic can ever tell you what unfolds before me every few months, he says.
They come to me with common ailments and in many cases it has turned out to be an HIV infection, he adds. Today, if I tell anyone to get even a routine blood test done, they assume the worst.
Another doctor, R D Thombare, has a clinic at Pare village, about an hour s drive from Gore s clinic. His lab technician comes up with at least one HIV- positive sample every six months.
But if you ask anyone in the village about the infection, they will pretend it does not exist, the exasperated doctor says. I don t just treat patients here. I spend hours trying to mentally prepare them for the worst.
Pare is known for its skilled gold refiners and like Hanumantpur, members of almost every household work outside the state. According to Thombare, many of them get their tests done outside Sangli and are aware of their HIV-positive status, but don t tell their families.
Sangli made headlines earlier this month when a positive couple decided to tie the knot, another sign of the newfound acceptance of people with HIV/AIDS. As a result, more and more women are coming out in the open, taking up jobs and forming support groups to help each other cope.
We meet and talk. It works wonders for us, says Manisha, who is part of the Aamhich Aamache support group with HIV-positive members.
She adds, When I came here, after years of depression I found there were so many others who had gone through worse and were willing to put it behind themselves. It has made me a new person.
These coping mechanisms indicate how deeply the epidemic has affected everyday life in Sangli. Earlier, it was a huge stigma story. No one was even doing funerals, says Seshu. Today there is a comfort level, despite the epidemic.
She adds: The only people who need to get their act together are private doctors, who still refuse to treat positive patients.
* (This story was done for the Asia Media Forum)
