The Hindu Business Line : A home away from home for AIDS victims

Mumbai April 6 Forty-five-year-old Ravi had fractured his right leg in a truck accident. Doctors delayed his treatment and then bandaged his leg and asked him to fend for himself. The reason? He was an AIDS patient with acute condition. Ravi could have easily lost his leg and probably the desire to live if an NGO had not directed him to Jyothis Terminal Care Centre.

Twenty-two-year-old Shibbu was shunned by his family and asked to leave home after testing HIV positive. For the next one year, he spent his days on the streets of Mumbai. He was brought to Jyothis in a semi-conscious state. He breathed his last seven days later; his body was disposed respectably under Hindu rites.

Since the time scientists identified HIV (Human Immuno-deficiency Virus) and AIDS (Acquired Immune Defeciency Syndrome), social responses of fear, denial, stigma and discrimination have accompanied the epidemic. Tales of patients being shunned by their near and dear ones to lead a life of shame and isolation have been told.

Even though the social acceptance of the disease has marginally improved from what it used to be in the 90s, there have been few individuals or organisations committed to the emancipation of AIDS patients. Especially, for those patients who are in the twilight of their existence.

Jyothis Terminal Care Centre is one of the few organisations of its kind. Located at the fag end of Navi Mumbai, the sleepy town of Kalamboli has only two things to boast about - Mumbai's largest McDonald's shop and Jyothis Terminal Care Centre. The objectives of Jyothis are to maximise the quality of life for terminally ill AIDS patients by alleviating pain and distress.

When established in 1999, it was the first care home in Maharashtra providing comprehensive services to people living with HIV and AIDS. Till date, it remains the only institution to provide free hospice services to AIDS patients (patients have to give a one time registration fee of Rs 500, which is waived in many cases). The holistic care approach covers an individual's emotional, physical, social and spiritual needs.

Jyothis is the brainchild of the congregation of the Sisters of Destitute, having its origins in the Alwaye district of Kerala.

"Jyothis has been a home to at least 1,200 persons in the last seven years of its existence in Kalamboli and in that time has seen 500 deaths," says the Sister Superior of the centre who does not want to be named. Most of the patients who land there are truck drivers, commercial sex workers and hotel workers, she avers.

The trust today runs two institutions, Jyothis Charitable Trust in Kalamboli and Jyothis Rehabilitation Centre in Taloja (both near New Bombay). In full strength, both institutions can house up to 75 men and women. The team at Kalamboli, is a modest one: four sisters and two full time volunteers.

A walk through the two-storey complex in Kalamboli is like traversing through a world of pain and helplessness. How one's own body becomes the biggest enemy is there for everybody to see. Of the 35 patients on board, five can neither walk nor talk. "Kabhi bhi ja saktha hai" (can go away at any time), says Ravi in Hindi pointing to the bedridden Birju. "The appalling condition of these people is choking even for us who witness death day in and day out, " said the Superior. People who are in a slightly better condition are shifted to Jyothis Rehabilitation Centre. There they are encouraged to engage in stitch art and making paper carry bags.

There is a visiting doctor who comes to the centre at least once a week. Every second Friday of the month, the institution conducts out patients department. About 60 patients line up for treatment. Moreover, they are provided free generic medical assistance for up to one month.

While Shibbu has become a part of Jyothis' record books and Ravi continues to ply on his wheel chair, the Sisters of Destitute continue the good work. For an institution that provides yeoman's service, it surprisingly doesn't receive funding from government agencies or bodies. It depends totally on funding from Bishops House and other patrons.

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