Wanted: A House for a Positive Future

By Shwetha E. George

Does he know? His mother is not sure, but her 13-year-old son has stopped eating from his father's plate. Sharing a plate used to be a ritual between father and son at every meal. He also doesn't ask about the nature of the disease his 37-year-old father is suffering from these days. Alice and Shaji keep asking themselves: Does their son know his father is HIV Positive? And how much more will he change when he knows his mother is suffering from the condition too?

According to the Kerala State Aids Control Society (KSACS), the estimated number of people living with HIV/AIDS in the state is 55,167 (2009). But if one were to count the teeming numbers that take treatment at Kerala's various ART (antiretroviral treatment) centres, the unofficial figure would be way above 100,000. At one of the ART centres, sources say that around 450 infected persons come for treatment every month, with 30 new cases among them. Meaning, on a yearly average, there is one new case of an infected person every day. In the districts of Kottayam, Ernakulam, Pathanamthitta and Idukki alone, 1,485 infected adults can be found, according to social workers with the Athmatha Kendra, an NGO run by the Catholic Diocese. The Kendra has three centres in Changanasserry, Kottayam and Alappuzha that assist 435 HIV-infected persons.

Hundreds of others from these places also have been infected but they cannot be surveyed because their CD-4 count (Cluster Declaration of White Blood Cells) is not less than 200 yet and so they do not require treatment.

At the Cancer Aids Shelter Society (CASS), a one-of-its-kind charity organization based in Kudamalloor, Kottayam, and promoted by a group of local women, 70 stakeholders regularly attend Patients Day, scheduled every second Monday of the month. Alice Shaji, 37, is one of them. And with her is Cicily Varghese, 38, a widow whose husband was infected in Mumbai where he had worked before their marriage. In 2005, he was admitted to the local hospital to be treated for TB. It was then that he realized he had AIDS. Cicily was kept in the dark. "Three months later, he got admitted again and this time the doctor revealed my husband's condition to me," she says. Cicily took the test and the result was negative. Today, she is back in CASS after three months to discuss the symptoms of her five-year-old son with the government lady doctor. Has she got him tested? "I cannot face the truth," she says, "It'll kill me."

Cicily wants to find a house first and move out from her brother's home. "The only reason my family still doesn't know what caused my husband's death is because they were estranged from me after my marriage," she says. Her family did not even come to her husband's funeral. That, she says, was a blessing in disguise.

Thresiamma, who lost both her daughter and son-in-law to AIDS, is now single-handedly raising her two granddaughters, aged 10 and 12, in Mundakkayam, Idukki district. "But I'm old and I dread to think what will happen to these girls after my death," she says with tears in her eyes. Her only solace is that the girls have both tested negative. It was the only reason her son allowed her to bring them home, albeit temporarily.

Sally, 36, and her husband, Biju, 38, who is a first-timer to CASS, are both HIV Positive. But their two daughters are not. The family lives under the staircase of a two-storey building in which they own a small vending shop. They are already members of Prathyasha, the KSACS-run counseling centre (one in each district), where they get a free meal and travel allowance. But today they have come to CASS to get the monthly ration of 10 kilos of rice, nutritional powder for children, welfare money of Rs 300 (US$1=Rs 50) each, and a free medical check-up. "My husband is always drowsy and sleeps off even while standing in the shop," says Sally. What tops the couple's priority list is to get a free house or land by applying to different government schemes for the poor.

This is a concern common to most people living with HIV/AIDS: They all want a home from which their children can never be evicted.

Says Sheeba Sreekumar, 42, a social worker with Athmatha Kendra, "I am one of the most sought-after speakers on Positive Speak but my own biggest fear is that I will be thrown out of the house." Positive Speak is a regular class taken by the NGO counsellors to help the HIV infected overcome tendencies to commit suicide, using their own life as an example. Sheeba is a counsellor employed by Athmatha Kendra and she, like all her colleagues, is infected.

Sheeba was a successful nurse practicing in the Middle East. After her marriage, she took a break of two years. When a fantastic job offer came from Saudi Arabia, she applied for a visa but was found to be HIV Positive in the medical test. Her husband died in 2005. She does not have children and is remarried to another HIV Positive man. "We pay a rent of Rs 1,500. It is eating into our income. And the only reason why we live here is because the landlord doesn't know about our condition. If you owned the house you live in, no one can throw you out. Even if your parents are ready to accept you back into their house, they live in the constant fear of contracting the virus," says Sheeba. No amount of counseling can completely erase the misconception that the virus is not as contagious as the common cold. Even among the educated, such awareness is rare.

Sheeba recalls the reaction of a doctor, a General Practitioner, when he realized he was dealing with a HIV Positive person. "He wrote BIO-HAZARD on the medical chart and circled it. He whispered something to the nurse and then wore one more pair of gloves."

In the initial stages, the greatest challenge in counseling the HIV Positive is to prevent them from committing suicide. Once they begin to accept their disease as part of their everyday life, the next priority is to get them to lead lives as normal as possible. Interaction with other infected persons, participation in AIDS-related campaigns and seminars can boost the confidence of a HIV Positive victim.

These women do not contemplate suicide any more. Even though they are reminded every day that they are suffering for no fault of theirs and suffer stress, they realize that if they kill themselves, their children - infected or otherwise - will be treated as less than human by their own kin. This is a powerful deterrent against any hasty action. They have learnt to take life one day at a time.