A passerby does not happen upon Grace Home. Set back off a narrow, unmarked country road, the home is sheltered by fencing. Only a small dust-covered plaque identifies the building by its former name, Mar Kundukulam Memorial Research and Rehabilitation Complex. Its long, dirt driveway meanders through dense palms and shrubs — well out of earshot and eyesight of the nearby bustling city of Trichur. When hailed, most tuk-tuk drivers in Trichur do not know the place, and those who do might just as well turn down a potential fare. When asked, most locals cannot offer directions with confidence.
But for the Nirmala Dasi Sisters who operate Grace Home, the low profile is just fine — in fact the location of the home for children and adults living with H.I.V./AIDS is intentional.
“We took in AIDS patients in Pullazhi [12 miles west of Trichur] and it caused a great deal of trouble when the local population became aware,” recalls Msgr. Joseph Vilangadan, the 85-year-old founder of the society. “So we moved the program to Grace Home and keep it quiet to avoid problems.”
However, on this Tuesday morning, not unlike most other mornings, life inside the halls of the three-story building — built with funds donated by CNEWA — is anything but quiet.
Some 32 H.I.V.-positive children — all orphaned or abandoned by their families — ready themselves for the day with a vigor that matches any exhibited by healthy youngsters their age.
In the dining area of the men’s hall, the children devour the rice and curry breakfast that Sister Elsamma Ettumanukaran has served. They tease each other until adult patients sharing the table lose patience and intervene.
In the women’s hall, girls jockey for position in front of the communal mirror. A girl smiles as she finesses her school uniform into place; another angles in for a closer look. Standing behind them, Sister Jessy Neelamparambil helps tie pigtails. At 23, she’s the youngest of the five Nirmala Dasi Sisters who staff Grace Home. Liberated from the mirror’s magnetic force, others in the adjacent dormitory play music, sing and dance.
Away from the commotion, Sister Lisi Valloppally is hard at work in the walk-in closet next to her office, which serves as a makeshift pharmacy. A nurse, she lays out a row of white plastic pill bottles alongside their corresponding red caps, each labeled with a child’s name handwritten on medical tape. With focused attention, the nurse then drops the appropriate tablets into each bottle, one by one. A simple enough task, it is not to be taken lightly. The medicine is antiretroviral therapy (ARTs) that, when coupled with good nutrition and proper health care, bolsters the immune system and helps contain the lethal virus.
“We don’t know what they will catch tomorrow. At anytime, we can expect sickness,” says Sister Lisi, who has served as the home’s resident nurse for the past three years. Last year, she cared for two girls, ages 14 and 15, who succumbed to secondary infections.
“We’re monitoring them every day, and every six months we check CD4 counts [a blood test that indicates the severity of infection],” continues Sister Lisi. “We can’t make a positive child become negative. But with these ARTs, we can extend their life.”
Antiretroviral therapy was first made available in India in the 1990’s. But it was not until 2004, when the Indian government began providing ARTs for free, that those with H.I.V./AIDS had access to them.
Two years later, India emerged as the country with the most people living with H.I.V./AIDS in the world: An estimated 5.7 million Indians now have the virus. In the state of Kerala it is believed that some 55,000 people are H.I.V. positive.
Despite the large number of cases in the country, the percentage of the adult population infected with the disease remains relatively low. Still, public health experts express concern that India may be on the verge of an explosion in the number of cases. They argue that large-scale prevention campaigns must be implemented immediately to prevent an epidemic.
Though the Indian government sponsors nationwide H.I.V./AIDS public awareness programs, it places the lion’s share of responsibility on individual states.
To date, Kerala has contained the spread of the virus epidemic, outpacing the neighboring states of Tamil Nadu, Karnataka, Goa and Andhra Pradesh, which have some of the highest H.I.V. prevalence rates in the country. Dr. Prashant Nair, a doctor of internal medicine at the Medical College of Trichur, attributes the state’s success to its strong educational system, high literacy rates and resilient family values.
“Things are better here. New cases of H.I.V. have come down 50 percent in Kerala from 2008 to 2009 because campaigning has become so strong,” says Dr. Nair during a recent visit to Grace Home, which is located a couple of miles from the Medical College of Trichur.
“People are becoming more and more knowledgeable about the disease, about how it spreads, early detection, everything. All of the fields — missionary, paramedic, social work — are actively working on this, not just the medical field.
“Certain parts of the population are much more prone to this disease — especially truck drivers, drug addicts, sex workers, those who are chronic alcoholics,” continues Dr. Nair.
“Trained educators visit drug addicts, mostly in the major tourist areas in the Cochin region. Or, they go to places where truck drivers stop for food or gas. If you target these populations — learn how you can interact with them, how you can convince them — then things will change all over. It’s these simple measures that have made a difference in Kerala.”
For its part, the church in Kerala has found a niche in the fight against H.I.V./AIDS — rehabilitation and palliative care centers.
“The church in general takes its responsibility with regard to H.I.V./AIDS patients very seriously,” explains M.L. Thomas, CNEWA’s assistant regional director for India in Ernakulam. “But it’s done differently eparchy by eparchy, in their own situations and facilities.”
The Eparchy of Irinjalakuda, for instance, runs an outpatient clinic that provides treatment and counseling to persons who test positive for the virus. The Eparchy of Kalyan operates a home for children orphaned by the disease.
“Some eparchies take care of terminally ill patients until a peaceful death, including their funeral,” adds Mr. Thomas. “Many conduct seminars and make the dangers of H.I.V. a point of discussion during retreats.”
Discrimination against those living with H.I.V./AIDS, however, remains pervasive and often brutal, even in Kerala. “The stigma still persists,” laments Dr. Nair. “We’re still seeing lots of patients abandoned by their relatives just because they fear that it spreads through touching, air and water. I even know some patients who aren’t allowed to eat food at their home because family members think it spreads through dishware.”
As part of his thesis in social work, Father Sijo Arikkat, a young Syro-Malabar Catholic priest on assignment at Grace Home, has studied the care of persons living with H.I.V./AIDS.
“Families worry about living near such an institution. They fear the disease may fly over to their homes and infect them,” he explains.
Yet residents of Grace Home receive unconditional love and care around the clock.
After breakfast, the children form two single-file lines in the front foyer — boys on the left, girls on the right. Father Arikkat stands before them and raises his arms. The chatter in this concrete entryway comes to a halt. Heads bow. Hands clasp. A short morning prayer ensues.
Moments later, the youngsters grab their school bags and return to the line. They know the drill. Sisters Lisi and Jessy stand at the front of the lines, each holding a plastic cup in one hand and a bottle of a highly concentrated nutritional drink in the other. As solemn as receiving holy Communion, the children walk up one by one and drink the contents of the cup, which is quickly refilled for the next child. He or she then bolts onto the school bus waiting outside.
As the last child boards, the doors close and the bus slowly pulls away. The children rush to the windows, thrust their heads out the openings and excitedly wave goodbye to their caregivers. Father Arikkat and the sisters return the enthusiasm. Clearly, the children’s joy, not their disease, is contagious this morning.
But no matter how much warmth and love the staff at Grace Home gives the children, the cold, hard facts of living with H.I.V. persist.
“Because of the stigma, normal children’s parents won’t allow them to sit in the same classes with our H.I.V.-positive children. They completely reject them,” says Father Arikkat. “There are many cases of this recorded by the media in Kerala. We can’t, we just can’t afford that. It’s a big nuisance. So they don’t attend the government school. Instead, we arrange for them to study at the nearby Pope Paul Mercy Home, a facility for children with severe mental disabilities.”
The children at Grace Home do not know why they attend the school they do, nor do they know any difference. “If we tell them,” explains Msgr. Vilangadan, “they become tragic.”
With the school-age children gone, a quiet falls upon the grounds of Grace Home — that is until a 2-year-old boy noisily pushes his pintsize tricycle across the facility’s marble floor. The tricycle plays an electronic version of “Twinkle, Twinkle Little Star.” Energetic and healthy — in fact, rather pudgy — the boy first came to Grace Home in 2009 covered in scabies and looking lean, says Sister Lisi, who calls him simply Chakara, or “sweetie” in the local Malayalam language.
“He would cry all day and all night,” she says. “Maybe he was thinking about his mother — she lost her mind and lived with Chakara in the Kuttippuram Railway Station, taking him here and there. Or maybe he feared he was going to be given away.
“He’s in good condition right now,” boasts Sister Lisi, adding that Chakara’s CD4 count is high, at more than 800. “He doesn’t need ARTs.”
Chakara’s attachment to Sister Lisi is unmistakable. He clutches her habit at the knees. She picks him up and puts him back down. He pushes the tricycle around some more and then into her feet. Sister Lisi ignores him. Chakara gets fussy and she picks him up again.
“At his age, he needs a mother’s concern and love,” says Sister Lisi. “I feel like I’ve been appointed his mother. Now he’s getting so much love. I don’t know how much love I have to give, but whatever I have I give.”
Sister Lisi’s love and devotion are characteristic of the Nirmala Dasi Sisters. All 300 of its members, including 50 devoted to persons living with H.I.V./AIDS, “care for those who nobody else will care for,” says Msgr. Vilangadan.
The Nirmala Dasi Sisters care for society’s destitute and unwanted, including single mothers, persons with Hansen’s disease and the mentally ill in Kerala, Mumbai and as far away as Kenya. But no matter where they serve, says Msgr. Vilangadan, “they must be witnessing. We must show how Christ lived and show the kind of person he was — humble, poor, hardworking, striving to save the souls of the poor and sick. Our life must be an extension of Christ’s life.”
In line with the community’s mission, the sisters never administer schools or hospitals. “Schools may have 100 students — 20 may be poor, 80 rich,” explains Msgr. Vilangadan.
“Hospitals are so costly. The poor get something, but doctors and nurses are highly paid. Medicine is costly and buildings, too. They can’t make one department for the poor and one for the rich. I don’t blame them, but that’s the situation.
“It’s no-status work,” he continues. “The sisters get no money — you can’t demand money from unwed mothers or the mentally ill. The sisters get four pairs of clothes. That’s enough. It’s difficult work, but they’re happy. Without them, there’s no social welfare in Kerala.”
In addition to caring for H.I.V.-positive children, Grace Home offers temporary inpatient services to H.I.V.-positive adults. “We take in sick patients, patients recently diagnosed or patients who have nowhere to go,” says Sister Lisi. “We try to get them back on their feet and healthy so they can go back to the outside world. Grace Home is not set up for long-term stays.”
Msgr. Vilangadan, however, recognizes the precarious situation in which most of these adults live. “If nobody will accept them, where will they go? They’ll die at the home.”
Sister Lisi spends her afternoons checking in on the home’s 15 to 20 adult patients. She moves swiftly from bedside to bedside, asking questions, checking charts and I.V.’s.
Stretched out on his bed, Paulos Thadathil pulls up his lungi, the traditional cotton garment men wear around the waist in Kerala, revealing a massive tree-trunk-size right leg. “Elephantiasis,” says Sister Lisi through her facemask. She then inspects his wounds. Chakara hangs onto the bed frame looking up at Sister Lisi. Wherever she goes, he goes.
“Paulos was started on ARTs, then got this infection,” explains Sister Lisi. “Since his surgery, he’s been here for eight months. His wound is improving. He’s very healthy. Strong mental prowess. Other patients are so down, but he’s taking food nicely.”
Mr. Thadathil is among the more fortunate patients. Though unmarried, he has family that visits him often and a home to which to return.
The same cannot be said for new arrival Sree Kumar, whose case tests Sister Lisi’s skills as a caregiver. Mr. Kumar stopped taking his ARTs and now suffers from hemiplegia, or paralysis on one side of his body. Sister Lisi would like to administer physical therapy, but Mr. Kumar, who suffers from depression, will not cooperate.
“We don’t know his history,” says Sister Lisi. “Until now, I haven’t counseled Sree Kumar because he’s still adjusting. I want to talk to him, but not now. He’s not mentally prepared. One or two more weeks. It takes time. Until then, I just say, ‘Don’t worry. You’ll find relief here. If you’re improving, I’ll discharge you. Don’t worry.’ But he’s very angry and in pain.
“They’re afraid when they come here for the first time. They’re gloomy because they can’t accept ‘I’m an H.I.V. person.’ It’s very difficult to manage. Everyone neglects them. Many think about suicide. We want to provide helpful counseling but first we must gain their trust. If we move too fast, they will pull away from us. Each and every one needs special attention or they won’t open up. That’s our duty.”
As Sister Lisi finishes her afternoon rounds, the school bus turns onto the home’s driveway and parks. Restless after a long day at school, the youngsters pile out of the bus and rush to the playground in front of the home, where they run wild and play on its slide, swing set, merry-go-round and seesaw. The sisters fan out to keep order.
At sunset, the children retreat indoors for study hall, dinner and evening prayer. There, as Sister Lisi does each evening, she reflects with the children on their day. Chakara climbs onto her lap and all the children sit on the floor around her. She then tells the Lord about Sree Kumar, the other patients and the youngsters. She prays for mercy and the strength for them all to carry on another day.
Peter Lemieux is a frequent contributor.