Defying Discrimination: Living With Death, But Without Fear

NEW DELHI: “You have only three or four months left...not more than that. You can try whatever you want to…”

It’s precisely what a lady counsellor in the ART centre of Lala Ram Swaroop Institute of TB and Respiratory Disease in South Delhi told Sita Ram in the year 2006. And then she watched him for almost the next eight years coming and going from her centre on a regular basis until she got transferred somewhere else. Sita Ram says that at least a counsellor should not say such things to an HIV patient.

Sita Ram was 41 then, as per his documents. So he is 51 now and as per his current ART (Anti-retroviral Treatment) status there is nothing much to worry about for the next few years. With a CD-4 count of 964 and a suppressed virus load (that means presence of undetectable amount of HIV virus in an specific amount of blood sample), Sita Ram now hopes to settle the biggest concerns of his life, his three teenage children, two daughters and a son.

Sita Ram doesn’t show any obvious sign of any serious illness. The black sunglasses on his dark, thin face is only because of a recent cataract operation. The tiny room that accommodates a family of five costs Sita Ram around 4500 rupees per month and looks more like a store room. The only folding bed in the room is broken and demands care to survive any movement on it.

In that typical struggling lower middle class set up a long, fabric bag hanging on on a hook on the back of the main door. The bag holds the proof of the extended life that ART has granted him. He asks his wife in Maithili to get the bag as he takes off his spectacles to wipe his eye.

Sita Ram came to Delhi in 1990 from Begusarai, Bihar after completing Class XII, and joined his father’s small business of selling vegetables. He got married in 1993. He says he was quite fine till then and even after that. He adds that he has a long history of bad health with very frequent rounds of hospitals. After Sita Ram got tested positive in 2006, after having avoided the test for long, he now realises that he must have lived with the disease for many years before it was detected. He suspects that he might have contracted the virus sometime around 1996 or 1997, almost a decade ago.

His wife, Beena Devi, listens quietly as Sita Ram talks about one of his sisters and her husband, who live in the same locality, and who have shown him the darkest side of HIV. He has observed discrimination from majority of people in his life but it’s the closer ones’ who hurt the most. Though his sister and brother-in-law try their best not to get in touch with Sita Ram as far as possible, even if they happen to visit his home they pay extra attention to their kid to keep him from eating anything. Sita Ram recalls how once his brother-in-law has called him a ‘patient’ openly in public during a heated argument and how his sister has supported her husband. With a helpless smile on his face Sita Ram says that people do such things due to ignorance only.

When asked how he contracted the disease, Sita Ram looks a little uncomfortable perhaps due to the presence of one of his teenage daughters. But it was not that hard to imagine how his wife would have contracted the disease. She was tested for positive only in 2011, five years after Sita Ram was diagnosed. She got her ART started in 2012 and her response to the treatment is far better than Sita Ram’s who still sometimes gets knocked down by infections. Beena Devi smiles as she says that though she takes her pills regularly she never does on two occasions: one at Juitiya and other at Chatth (both are Hindu women’s festivals observed with strict believes).

An average person like Sita Ram would never bother to check even the expiry date of a medicine if prescribed by a doctor under normal conditions. But the kind of awareness Sita Ram shows about his ART treatment and the consequences of its brutally strict regime and the repercussions if not taken properly, is quite surprising. He knows not only his combination of drugs and its manufacturer but is also aware of the fact that the drug combination he is taking currently is the last available combination option under first line treatment for HIV patients in India. It means that if his viruses develop resistance to his present medication he will have to shift to the second line treatment. But his wife still has her options under the first line treatment.

Sita Ram has also served at a de-addiction centre in south Delhi as an out-reach worker among injecting drug users for around six years but his vegetable business remains the main source of livelihood. Now, since he has to take rest for few weeks due to his eye treatment, his son and the youngest daughter handle the cart in the evening.

He seems relieved as he says that all his children are safe and thankfully he has managed to get his eldest daughter married. Now he is hopeful for his remaining responsibilities as a father which had once seemed out of his reach. He does seem to live a normal life in his locality and often visits his village in Bihar.

And though there is technically nothing to worry about his present condition he never forgets one of his doctors and what he had once said: “After all ART has to lose the battle as the viruses always win at the end.”