HIV/AIDS Creepting into Goan Homes and Response in Goa.

[Guest guest]

Dear Friends and Forum Members,

This is the local response of media , and how people living with HIV/AIDS are

suffering in Goa. HIV, often referred to as AIDS, is slowly but increasingly

creeping into the homes of respectable Goans. There was a smug notion in Goa

earlier, that the HIV virus and its accompanying disease of AIDS was the

exclusive curse of poor immigrant labourers, slum dwellers and those visiting

prostitutes. That notion is now a hollow myth. The virus is fast ruining decent

Goan families, poor and rich alike. A few of these HIV positive people were

brave enough to talk to Joaquim Fernandes in the hope that their stories would

help others avoid the pitfalls they fell into. The article will be carried in

two parts.

Till May 2005, the official count of HIV positive people in Goa was 7,813. Of

these, 5,419 were males and 2,394 were females. And that is only the official

figure. “But all people do not declare. The unofficial and actual figure will

surely be higher,” says the Project director of the Goa State Aids control

Society (GSACS), Dr. Dias. due to the stigma and discrimination in

society, HIV positive people are highly reluctant to publicly admit their

condition.

But Philu (name changed) was courageous in telling us her story. She was 18 when

she got a marriage proposal. she had dropped out of school early and came from a

very poor family. With her family’s ready consent, she married the boy a year

later. He was a fish vendor who bought fish at Margao and hawked it in another

town. Barely a month after her marriage, she started getting boils near her

private parts. She also started getting lumps on her neck. her husband started

suffering from a slew of minor illness like cold, cough and rash on his body.

When she failed to conceive after three years, the couple decided to see a

doctor. Because of the lumps and boils, she was tested and found to be HIV

positive. The husband, ditto today, he is full-blown case of AIDS. A frail

shadow of his old self, he is confined to a wheel-chair. His one side is

paralysed, he has tuberculosis and also STD (sexually transmitted disease).

Philu says the disease has mutilated his genitals beyond description.

But she cares for him with a devotion that is unbelievable. Unbelievable because

of the things she remembers about him.

His frequent absences from home at night, his lies, his penchant for porn films

and other bedroom habits. She stresses, amidst tears, that she has never had

relations with another man other than her husband. in her own words, she landed

straight “from school bench to marital bed”. The details of her sordid plight

and the depth of her pain are beyond the scope of this article. But she is

convinced that he had the disease and knew of it even before marriage. Only 24

now, she feels bitter at being cheated. But, “I have forgiven him and leave my

own fate to God”. Luckily for her, despite the boils, her condition is

relatively good. She takes six tablets each time; morning, noon and night.

If HIV can shatter the life of a fish vendor and his young wife, it can also

afflict the upper – class landed gentry to which class belongs. Her

husband died about 20 years ago. She was around 40 then. Her husband had a

friend who helped the family manage their affairs and often drove

around. Subsequently, her two grown-up children moved and began a

relationship with the man. But the bachelor previously worked on ships and had

seen many ports. tested HIV positive more than 10 years ago.

It must have been the loneliness that drew her to her husband’s trusted and

respectable friend. But her one wrong choice, through a cruel conspiracy of

circumstance, has landed her with deadly consequences. she is around 60 years

now and sick like her companion. Medicine helps to mitigate her physical

suffering. It cannot alleviate the pain of rejection by her children. They have

disowned her. They neither want her money nor the properties, taunting her to

give it all to her lover.

Families often show acceptance. But society by and large, is unforgiving.

Experts in the field of HIV say the public mindset towards an HIV positive

person, in Goa or out side, is like, “Aah, you were going to prostitutes and now

God has punished you with AIDS. You better stay far from me, or you will give me

the contagion.”

Beside the two examples above, there is a long litany of Goan HIV stories,

wretched enough to make the heart grow sick. But these are also stories of great

courage and fervent hope.

Experts in the field of HIV say the public mindset towards an HIV positive

person, in Goa or outside is like, " Aah, you were going to prostitutes and now

God has punished you with AIDS. You better stay far from me, or you will give me

the contagion. "

The physical torture of AIDS.

“My friends did me in. They took me to a bar one evening and spiked my drink.

Then they took me with them to the red light area of Grant Road. That was the

one and only time I visited a red light area in Mumbai. Really, I am not that

kind of a person otherwise.” This is the confession of Ashok (name changed), an

HIV positive man from North Goa.

If Ashok is to be believed, then fate has been extremely harsh to him. his “one

and only” visit to a Bombay brothel, and that too due to the machinations of

friends, has given him AIDS. Doctors however confirm that even one sexual

encounter with an HIV positive person can pass on the virus to the other.

Ashok is 40, but looks 60. A gaunt face over a haggard frame, his sparse hair

has turned prematurely grey. His wasted, rickety thighs are pockmarked with

black marks from some unnamed scourge that made him scratch his legs endlessly.

The wounds have healed but the black marks remain, like the scars on his psyche.

He is the eldest of many siblings. Their parents died early, so it was his

responsibility to care for the brood. From early on, Ashok suffered from

epileptic fits and that was the reason he chose not to marry. he spent his

entire early life working in Goa. Then in 1996, somebody offered him a job in

Bombay. Along with the job, came Bombay-friends whom he sarcastically describes

as “vidhvaan” meaning “highly knowledgeable”. According to him, these are the

friends who spiked his drink on that one tragic occasion and took him to the

brothel from where he caught the dreaded virus.. He did not know then that he

had HIV. He gave up the Bombay job after four years because it was

hazardous and was affecting his health. Ashok returned to Goa, took up a job

and all was well.

He vividly remembers when the first signal came. “It was in November 2004 when

the first International Film Festival of Goa was about to commence. I got fever

and boils on my body. So, I went to the Goa Medical College. They checked my

blood and said I was HIV positive,” says Ashok. His troubles had just begun.

He soon contracted tuberculosis, a common infection among HIV positive people.

Sent to the TB hospital at St. Inez in Panaji, Ashok was put under medication

that had strong side effects and made him nauseous. By and by, he recovered and

resumed work. Within four months, the fever returned, this time with a cough and

a cold. Weak and bedridden, he was put under medication again. he recovered only

to fall sick again a few months later. It has been like this since. in less than

a year, Ashok had to get himself admitted to a temporary care home in Guirim

thrice. Somewhere in between, his right eye lost its sight. he underwent an eye

operation at a hospital in Karnataka, but the eye cannot still see properly.

There was also the rash of boils on his legs that kept him scratching for long

tortuous nights. At one point, he grew so weak, he could not even climb a few

stairs.

He says no one in his village knows of his HIV status. Strange, but he also

claims that even his immediate family does not know about the extra nature of

his affliction. They care and cook for him though. But he can only eat chutney,

chappathi,conjee and boiled vegetables. ”I cannot eat anything else. Or else, my

food-pipe burns,” he says.

When asked if he thinks of the future, he forces a weak, hesitant smile. “I want

to work but doctors advise me against it. I fall sick often so even if I take up

a job, employers will question me ….” Ashok admits he has no money left with him

now. He survives by moving in and out of the temporary care home and on the

mercy of his siblings.

HIV: Discrimination by Family

“My daughter hates me, taunts me and her daily insults tear my heart apart,”

confesses Marie (name changed), the tears rolling down her eyes. Marie is a

domestic worker from South Goa who found her-self HIV positive around January

2005. Her 17 year old daughter’s vitriolic hatred of her mother is because of

two things; Marie’s HIV positive status and her 12 year long relationship with a

man from whom she sys she got the virus.

The daughter’s heart – rending insults apart, Marie also suffers from acute pain

in the joints (she keeps putting Belladona plasters), an ache in the temples

when she sleeps and trembling (kodkoddo). Her worst affliction is the stress

from worrying about herself and her young daughter. “I am poor,” she cries, “I

have no savings. If I fall sick because of this disease, who will pay my room

rent? Who will feed me? And my daughter will fall on the streets.”

She does not know her own age but guesses herself to be around 50. Neither has

she known much happiness. “My husband died 16 years ago. But he never gave me

any love. He used to drink heavily and then beat me. He died from drinking. Now

I got this disease. I must be fated to suffer.” With three young children to

feed, Marie

worked as a house-maid all her life. She also found solace in the arms of a Goan

married man, with whom she had a 12 year long relationship. But the dalliance

ended when Marie met with an accident in 2004. “He had promised me much. But he

ditched me when I met with the accident. He got scared he would have to support

me financially,” says Marie. Her eldest child, now married, has long forsaken

her. The second child is trying to break out on his own. Marie still feeds the

third, who repays her with insults. But the mother still talks kindly of her

youngest. “She is young. She does not understand,” she says.

The first indication of Marie’s condition came five months ago. She had repeated

bouts of vomiting and loose motions. After the usual rounds to hospitals and the

blood tests, came the report. She was HIV positive. Unschooled as she is, when

doctors and social workers explained, she grasped the seriousness of her

condition. “I cried a lot. I am poor and I wanted to commit suicide. But the

counselors made me understand. They gave me hope,” says Marie.

She survives on that hope now. With her long-time lover slinking away and her

youngest daughter hating her, she survives on the compassion of nuns and social

workers. There also the daily drudge of medicines. Marie is terrified that

people will find out her. “A young couple died of AIDS in our village. You

should have heard the things people said about them. I dare not tell anyone

about myself. No one will give me a job,” she says. Of her own volition, Marie

has told only one person in her family; her sister. “When I visit her, even she

is scared of me. She hesitates to even give me a glass of water and I have to

reassure her she will not get the disease like that.” She had hidden her status

from her daughter. But the young girl chanced upon Marie’s blood test report.

There are occasions when acquaintances question her about her drastic loss of

weight. “I tell them it is because of the accident and the operation. And I walk

smartly before them,” she says.

Recently, she saw her former lover at a bus-stand and was surprised he appeared

fit. When told that she herself does not appear very sickly, she says, “He must

be having it (HIV) too. I have never been with any other man except him. There

is no way I could have got it otherwise.”

For a long time earlier, blood oozed from her tongue whenever she brushed her

teeth. With medication, that has stopped. But now her tongue tastes perennially

bitter. “How I wish there was a medicine for this disease. I wish God gives the

doctors some medicine for AIDS. I pray everyday. I can’t work too hard now. I

get tired, I tremble. My neck and shoulders pain. I have no help and I am

worried,” laments Marie. She need not say all that. Her spontaneous sparkling

tears, her intense furrowed brow, the resigned slump of her shoulders, the

tremulous quiver in her lips, tell her tale of woe more eloquently than her

speech.

Searching for love, He found HIV

When fathers drink and wreck their homes and mothers are forced to seek jobs on

distant shores, perhaps children have to pay for the broken oaths. This true at

least in the case of (name changed), from rural South Goa. The 36 year old

bachelor is ill and lonely; trapped by the malevolence of the virus called HIV.

was born and bred in Bombay, the eldest of three children. When he was six,

an alcoholic, unemployed and violent father forced ’s mother to seek

employment in the Gulf. and the other children were left anchor-less in the

beguiling arms of amoral Mumbai. Coping with a drunken father and pining for his

mother while his siblings were away at boarding school, struggled up to the

seventh standard and then dropped out of school. He started working at hotels

and finally as a young man, he hit the employment jackpot by securing a job of

waiter in one of Mumbai’s plush five-star hotels. On most days ’s picking

from tips alone totaled Rs. 500. He developed a penchant for the good life then;

designer clothes, discotheques, drinks and dames. He started with dame actually.

After five years of intimacy, the couple had a lover’s tiff. ’s young and

stubborn girlfriend swallowed a cocktail of poisons even as he sat talking to

her mother in her house. He took the death

badly. “After that I started drinking like a pig or a dog. I don’t know what,”

he says. Some time later, lost his father.

He acquired a new East Indian girlfriend and rolled on with his libertine

lifestyle. “I had plenty of fun. Both, with the first girlfriend and with the

second,” he admits candidly. He continued having fun despite often seeing his

second girlfriend “freaking out” with other boys at different places and once

“at Gorai beach.” He finally was tired of her indiscretions and left her. But

his drinking increased and he admits to having relationships with “a few other

girls” in Mumbai. Twenty seven years young and feeling invincible, he fell sick

for the first time with an illness, symptoms of which he likens to tuberculosis.

He says the TB was cleared in Mumbai itself and some time later on the

insistence of his mother, he left Mumbai and came to Goa in around 1998.

Since then he was working in a private company along with his younger brother.

In 2002, the cough returned. Tests at the Hospicio in Margao confirmed two

things; had tuberculosis and he was also HIV positive. Due to his long stay

at the hospital, both his brother and his employer came to know of his

condition. “At first, I was scared and nervous. When I went home from hospital,

I started to smoke and drink heavily. I thought I am going to die anyway, so

what the hell,” he says. Not wanting to hurt his mother, hid his dark

secret from her for two more years. He finally wrote her a long letter last year

explaining everything. And no sooner had he posted the letter, he phoned her up,

warning her to burn the letter as soon as she read it. “My mother is uneducated.

She does not understand about AIDS and all that,” he smiles. “Only when she saw

me recently, she understood.”Since January 2005, says he is “completely

shaken up.” He lost weight rapidly and looks gaunt. There is

a persistent ache in his joints and frequent bouts of dizziness. He also suffers

from lapses of memory and an itch around genitals. He can no longer take up a

regular job; he is too weak. Due to his HIV positive status, his younger

brother, who has married, tried to force him out of the house. But his mother

put her foot down and told the younger son off. The mother still works in the

Gulf, her earnings till-now drained by ’s siblings. So lives alone,

trusting the religious order in his village to provide him food as they did

earlier. He was supposed to do some light work there. But the day before he was

supposed to start, he started vomiting and having loose motions. “Even the water

that I drank, I vomited,” he says.

wishes all this were different. He wishes his mother had been with him when

was a young boy in Mumbai. “I don’t blame her. She did everything, A to Z for

us. All this was my fault. But if mummy was there she would have told me not to

drink. She would have advised me against all the things I did.” While owning up

his fault in contracting HIV, attributes his condition to his second

girlfriend. He learnt from his friends in Mumbai that she died of AIDS some time

ago.

Driven to the arms of HIV

(name changed) wishes she had never separated from her husband. She

regrets her 13 year long relationship with another man. And she wishes she never

had HIV. She is a strong woman looking at her affliction with stoicism. But the

lament still came. “What happened to me cannot be changed. But it should not

have happened to me,” she says.

’s is the rare case where she is HIV positive but her husband is not. The

virus was detected in her body only about a year ago. But the actual run-up to

her condition began almost 18 years back. She was married and a mother of three

when sharp differences arose between her and her husband. Her husband drank

heavily and beat her often. says she sought help from family and other

people but no one helped. The strife was so severe, that in a fit of

desperation, sought to kill herself along with her children. She was saved

by a man who sheltered her eventually became her lover. She says she lived with

him, along with her children, for nearly 13 years. Her husband kept searching

for her and although she was in Goa, he never knew her exact location.

The rapprochement came about five years ago. Urged by religious people, she

reluctantly agreed to go back to her husband. She says he wept bitterly and

promised to never hurt her again. He has kept his promise and they have lived

happily since. But one year into their reunion, she got rash on her back she

describes as “sorpinn” and thus began frequent visits to the Goa Medical

College. “I could neither scratch my back nor put medicine there. I also lost my

appetite and could not work,” she says. This continued for three years. Not only

the doctors at the Goa Medical College, but even she got fed up of her

condition. The doctors blamed her for not taking the medicines correctly, she

says.

Then big boils, like lumps, started appearing on her body. But no puss would

form in the boils and they would go away just as mysteriously as they had came.

Around June 2004, doctors tested her blood and she was diagnosed as HIV

positive. Surprisingly, despite living with her husband for the last five years,

he has tested negative. He is very supportive of her now and accompanies her on

her visits to hospitals and counsellors.

“He blames himself for my condition,” says . “He says that if he had not

driven me out of the house, I would never hav3e got this disease.” But when her

condition was first announced to her children, they cringed. The spouse of one

of her children, who had married by now, would not allow their children near

her. She had a separate plate and separate soap and so on. But now, things have

changed. “They eat the food I cook and the children play and sleep on my

bedding.” She says. suspects she got the virus from her former lover. “He

is not revealing his condition. But I know he is falling sick frequently and

takes treatment in Mumbai,” she says. If he had other relationships behind her

back, she is unaware.

Last December, fell seriously ill. She had violent bouts of vomiting that

left her “like dead.” She recovered after treatment but her health keeps

fluctuating. She often gets loose motions and fever. Once after a persistent

cough and cold, she went to the Goa Medical College and was referred to the TB

hospital at St. Inez, Panaji. It was diagnosed as pneumonia, she says. For the

last three months, she had been receiving anti-retroviral treatment (ART).

“I am feeling better now and I can do the house work. The nausea, the feeling of

tiredness and disgust are no longer there. Earlier, I used to get regular

headaches and even music used to irritate me,” she says. But long before her

diagnosis and the medication, had joined a prayer group. She, and her

husband, find solace in prayer.

claims that none of her neighbours know she is HIV positive. It remains a

tightly guarded secret. Fortunately for her, her outward appearance does not

betray her condition. Also, she does not show much emotion about her affliction.

But her pain shows in her lament that she wished there had never been the strife

with her husband that drove her to another man. She hopes this never happens to

anyone else. (The Second part will continue next week).

This is the response of media locally. Forum members and friends can you tell

us, how to deal with such issues with media at locally. After reading a paper

on Sunday, 7th August 2005, President of Positive Lives Foundation, Mr. Jaffer

Inamdar, called up in anger ness to the concern person of News Paper and

discussed the issues. Why media is interested in breaching the sexuality of the

PLHA? Whether they want to give message that we are immoral behaviors people

those who get infected with virus? Picture, which was shown in the first page,

it was very horrible Sketches by Nagesh Sardesai like skeleton, which create a

fear, based massages. Finally, PLHA has to suffer. etc etc.

And also discussed other sensitive issues related to people living with

HIV/AIDS. Jaffer wanted to meet and discussed the issues personally, but Joaquim

Fernandes was very busy these days, but he told him to email all the matter.

Jaffer who is been advocating this issues with the Navhind Times, how media can

response sensitively. During this time he had been taken interview of Jaffer

also, who was a first person to come out openly and declare his HIV status

publicly, to provide human face and voice to the epidemic in Goa. On 1st

December 2001, still he is continuing his campaigns by going publicly as a

positive speaker. He has been addressing various programs independently and

representing GIPA from 2001. Now who is struggling with his day-to-day life,

along his family too? There was an incidence happen with jaffer last month very

soon we are going to pub lice it at the forum and experience of people living

with HIV/AIDS in Goa

Another side we Positive Lives Foundation “PLF” is striving very hard without

any financial support in spited various hardship. To addressed the issues of

people living with HIV/AIDS in Goa. This year we have been submitted the project

proposal to Goa State AIDS Control Society, but they failing again to support

such organization and people in Goa.

GSACS said there is only one Guidelines of NACO for Drop-in-Centre, that we have

to wait for one years, than they will think over it for next financial year. But

we have not submitted the proposal for Drop-In-Centre. We have submitted the

proposal on increasing the level of visibility among the society in Goa,

Empowering PLHA, conducting awareness programs for general population by

conducting Skills & Capacity building workshops. Which is a part of care and

support projects overall.

Even we had addressed the mail to General Director, Dr. Quirashi and Chair

Person of GSACS, State Health Secretariat Ms. Debashree Mukerjee, in this matter

to do the needful.

we also had addressed the mail to GSACS as well Health Secretariat to involve

one-male and female representatives from PLF in their Decision Making body

“Executive Committee” of GSACS. Decision taken by the GSACS affecting us in our

lives directly or indirectly. Hence, there is also a Practical Model of GIPA at

the globally. Jaffer is been representing GIPA from few NGO’s in Goa

Since May we are communicating, we have not yet received any single response

from them regarding these matters. Since formation of Positive Lives Foundation

“PLF” last three years we are working voluntarily without the support.

We feel disappointed, being a good resourceful and experience people living with

HIV/AIDS in Goa. Involvement of PLHA is not happening at all, at the grass root

level.

We believe that people living with HIV/AIDS are part of solution addressing

HIV/AIDS epidemic. From our own experience of living with this virus, we know

that we can do a lot to improve the quality of life of positive people because

your reality is our reality.

We are not saying that we have all the answers to the problems that arise with

HIV/AIDS but we want to be part of the solution. We want our voices to be heard

and society to know that we still have a value and can contribute positively to

stemming the tide of the epidemic in Goa.

All the forum members and friends can you suggest us what we could do? How we

can work without the support. How we can change the attitude etc. As we have

major role to play. This is the response at grassroots’ level. Finally, we are

the sufferer.

In solidarity

Sudheer Sharma

General Secretary, Positive Lives Foundation “PLF”

POSITIVE LIVES FOUNDATION “PLF”

H.No. 490/A, Gurudwara Road,

Mangoor Hill,

Vasco Da Gama, Goa – 403802, India.

Ph: 91- 832- 2532832

Cell : 919326125886

Email : poslivesfoundation@...

plf@...

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Source: The Navhind Times " Weekly Panorama.

Date : Sunday, August 7,2005.