To hell and back

Many HIV+ patients went through a harrowing time before they finally found their equilibrium

By Shevlin Sebastian

When you look at Sumathi, you cannot imagine she is sick in any way. Her face is glowing, she is dressed in a blue Kanjeevaram saree, with gold earrings and a necklace, and she speaks in a low but confident voice.

In 2001, her husband became HIV positive, and a year later, she also tested positive. By then, she had two children, although she was only 20 years old. And thus began the harrowing reaction from family and neighbours.

“Since there was only one bathroom in the house, there was a fear that my husband and I would pass the virus to the others,” she says. So the family, which comprised her in-laws, two brother-in-laws and a sister-in-law, constructed a makeshift toilet at the back of the house.

For six months, husband and wife stayed inside one room. Sumathi was not allowed to feed or touch the children. When she used a path which was also used by neighbours, they would put bleaching powder on it.

When her mother-in-law went to the nearby river at Palakkad to wash the clothes, if there were women having a bath downstream, they would move upstream, so that the water would not flow towards them.

“There was nobody to support us,” she says, as her eyes fill up. “The only good news then was that my children had tested negative.” Her husband passed away in 2003. Sumathi found a meaning in life when she started working as a peer counsellor at Prathyasha, the Care and Support Centre, which is supported by the Kerala State Aids Control Society.

Elango Ramchander, an ex-president of the Indian Network of People Living with HIV, tested positive in 1988. “At that time, it was regarded as a death sentence,” he says. What did not help was his doctor’s prognosis that he would die within three years.

“Every day I would see the sunrise and feel very happy,” he says. “Then, at night, I would see the moon and say to myself, ‘one day is over’” He says that when a person has the virus, the pain and the fever constitutes only 35 per cent of the suffering. “The emotional and psychological problems are 65 per cent,” he says.

At the end of three years, Elango assumed he would die soon, but that did not happen. “The information turned out to be wrong,” he says.

The tide changed for Elango when he joined the NGO, Samraksha. “It was only then that I got all the information, support and courage,” he says. “I realised I could survive.”

In 2000, Elango got married to a HIV positive woman, Asha, and has a son, Yatish Darshan, who is free of the virus.

Both Sumathi and Elango had come to Kochi to attend a seminar organised by the Council of People Living with HIV/AIDS in Kerala ((CPK+) in collaboration with the Centre for Advocacy and Research (CFAR).

At the seminar, the good news being announced was that attitudes towards HIV+ people are changing, albeit slowly. David Bodapati, of CFAR, says that, indeed, people are a lot more accepting these days. But there has to be a change of attitude in the rural areas.

In Kerala, he has been disappointed at the discrimination shown to HIV+ students in schools. In the case of Bency and Benson in Kollam and Sathyashi Jyothi in Kottayam, parents protested against the presence of these affected children.

“They were being vengeful,” says G. Anjana, president of CPK+. “Parents are aware the virus will not spread by children studying together.” She says she welcomes the government plan to introduce a rule that a school could lose its license if it removes a HIV positive child from the rolls.

“The school authorities should stand firm,” she says. “The majority of the parents do not have a problem, it is just a few who are resisting.”

Meanwhile, CFAR is advocating a closer tie-up with the media because it is only through it that the stigma can be removed completely.

“Our aim is to link NGOs with the media,” says David. Elango says they want to promote a lot of positive stories in the media. “I have been living with the HIV virus for the past 20 years,” he says. “I want to show that even if you are positive, you can lead a healthy life.”

Sumathi says she is also in good health and does not take any tablets at all. “My CD4 count is 1762.” (Normal CD4 counts in adults range from 500 to 1,500 cells per cubic millimetre of blood. The CD4 count goes down as the HIV disease progresses).

“A positive attitude makes a big difference,” she says.


HIV/ AIDS in Kerala • HIV Estimates : 24,831
• AIDS reported: 3547 (as on Feb 08)
• AIDS death toll: 1040
Features of the HIV epidemic in Kerala
• The first HIV infected case identified in 1987
• More than 90% of infections are acquired heterosexually
• The epidemic is predominantly related to migration
• 40% of households have one migrant
• Men are infected in cities outside the state by female sex workers
No significant rural-urban difference
• Skilled workers most commonly infected
• The median age for infected males 31 years
• Females 27 years

(Copyright: The New Indian Express, Kochi)