Wanted: A House For A Positive Future

[Guest guest]

Wanted: A House For A Positive Future

July 21,2009 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

organisation 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 realised 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 counselling 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 practising 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 counselling 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

realised 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 counselling 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

realise 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.

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