Touching and being touched at Sumanahalli

BANGALORE, India — I walked through the Ave Maria Home for leprosy patients — the halls and rooms were clean, although they were showing their age. In the TV room, patients were watching a version of the great Hindu epic, The Mahabharata, in the local language of Kannada. Others were

BANGALORE, India — I walked through the Ave Maria Home for leprosy patients — the halls and rooms were clean, although they were showing their age. In the TV room, patients were watching a version of the great Hindu epic, The Mahabharata, in the local language of Kannada. Others were playing chess or talking quietly.

A gentleman motioned to me to come into his room. Heavy set, with white hair and a moustache, he wore a long white cloth around his waist with a red and gold border. He was bare-chested because of the Indian summer heat.

I went into the gentleman’s room and he graciously offered me a chair. He sat down on his cot and pulled up another chair for his foot, which was heavily bandaged.

Slowly, deliberately, he unwrapped his bandage and I could see that most of the bandage was stuffed in a hole on the side of his foot. I say “hole” because there did not seem to be any blood or noticeable scarring. He proceeded to remove the bandaging — it came out in reams, at a length of more than a foot. The gentleman then took out what appeared to be an awl, with a plastic blue handle. He motioned with the awl toward the hole in his foot and shrugged his shoulders.

It was a self-inflicted wound.

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The Ave Maria Home is part of the Sumanahalli Society. Sumanahalli literally means “village of good-hearted people.” The Sumanahalli campus is 63 acres of green on the edge of Bangalore, a cosmopolitan and rapidly expanding city in the South Indian state of Karnataka. Sumanahalli is a Catholic organization established in 1976 when the chief minister of Karnataka asked the Catholic Archdiocese of Bangalore to establish a leprosarium, since, in the minister’s words, “it may be difficult for a government organization to provide this, as tasks of mercy are not generally effectively done by a bureaucratic system.”

Over the years, the mission of Sumanahalli has grown beyond caring for leprosy-affected people. There is now a treatment center for those suffering from HIV/AIDS and children left orphaned by the disease. Sumanahalli also sponsors outreach programs for juvenile offenders and street children. The campus itself has approximately 380 residents, but Sumanahalli programs reach tens of thousands of people throughout South India every year.

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“Pain is the greatest gift,” Masthan Saheb had told me on a previous visit to Sumanahalli, when I was making preparations for a visit of students from the College of the Holy Cross in Massachusetts where I teach.

Masthan Saheb is senior staff member at Sumanahalli and often takes the lead in introducing the Sumanahalli’s work to visitors and the general public. The “problem of pain” is something that is at the heart of leprosy — though not in the way that those unfamiliar with the disease might expect.

In explaining the problem of pain and leprosy to me, Masthan Saheb gave the seemingly simple example of when we sit down. After we sit down, we’re always moving and readjusting to make ourselves comfortable and to relieve pressure. If we didn’t feel that pain, we wouldn’t move — eventually we’d get sores, and because the sores wouldn’t hurt, we’d resist treatment, and then the sores would get inflected. Such is the case with leprosy patients, who ignore injuries because they don’t feel pain — the injuries are left untreated, become infected, and often the only solution is amputation. The problem is especially serious for the poor and migrant laborers who do not have access to a consistent treatment regimen.

I remembered Masthan Saheb’s explanation when the gentleman showed me his foot. Initially, it might seem bizarre or pathological to injure oneself in that way — after all, pain is something that is supposed to be managed, controlled, or, if possible, eradicated. But those of us in the developed world are not unfamiliar with cultivating pain, albeit in covert and often narcissistic ways. We lift weights to “feel the burn;” endure the rigors of dieting; and — if we have enough money — shape and reshape our bodies into more “socially acceptable” forms through plastic surgery. The gentleman I met wasn’t simply trying to cultivate pain — he was trying to feel something, anything. He also was attempting to communicate to me, without words, the painless suffering of leprosy.

For leprosy patients, pain provides a particular form of connection: it is a way to re-establish a relationship with one’s physical self — a physical self that is becoming numb, other, unfeeling.

* * * * *

On another day, I met the gentleman once again when he pulled out a white plastic chair for me so I could sit next to him during a prayer service at the Ave Maria Home. There was a candle, and all of us were arranged in a circle around it. People prayed to Jesus, and also to Allah, and Krishna.

One resident was sitting on the ground, and he stretched out his hands in prayer — a gesture that everyone else in the circle mirrored. This was a particular style of prayer that is actually quite common; I had been introduced to it in India several decades earlier. It is a charismatic form of prayer, focused on healing and receiving “Pentecostal” gifts such as speaking in tongues and prophecy.

Although there was no speaking in tongues — at least as I observed — I was struck by how appropriate that form of prayer is in that context.

Central to charismatic forms of prayer is touching and being touched.

Touching and being touched is something deeply meaningful for those who suffer from leprosy. Leprosy is transmitted through a bacillus bacterium that likes cool places, so it usually settles in the extremities — hands and feet, usually, though sometimes on the face. It is contagious, but only after prolonged exposure in unhygienic conditions — in any case, the leprosy bacillus is usually passed by respiratory excretions, not by touch.

Nonetheless, people affected by leprosy — often identifiable by their sores and lesions — are considered untouchable and are often expelled from their villages and families.

* * * * *

Sumanahalli’s approach to leprosy and HIV/AIDS is holistic. Medical treatment, including reconstructive surgery, is provided free of charge, and there are quarters on the Sumanahalli campus for patients’ families as well. But the goal is not to “warehouse” patients; it is to reintegrate them into society. Sumanahalli builds homes and has had success in finding patients employment in government jobs. Also, Sumanahalli provides training in marketable crafts such as leatherwork, carpentry, and welding.

Central to Sumanahalli’s outreach is St. Joseph’s School. The school not only provides education to children who are living on campus, but also to children who live in local squatter communities.

I taught at St. Joseph’s School in June, along with students from the College of the Holy Cross who were doing an internship at Sumanahalli.

Each one of us from Holy Cross had classes, and we all tried what we could to engage students — whether that was counting up to a million in English, playing “head shoulders knees and toes,” or memorizing poems. I was the substitute Hindi teacher — Hindi is a North Indian language that is not spoken very widely in South India, so it’s part of the curriculum as a secondary language, along with English.

I could tell which of my students had leprosy. They had white lesions. Those suffering from HIV/AIDS were hidden, except when they would walk back from school and take the turn to go to the HIV/AIDS ward at Sumanahalli. Most students, however, weren’t suffering from those stigmas, but they were suffering from other stigmas almost equally oppressive: being poor, being low caste. But they played like ordinary kids, fought like ordinary kids.

And they held onto all of us from Holy Cross, not wanting to let us go.

I have a picture of myself that the students took with my camera. I wasn’t ready, so I have a funny look on my face — a kind of half-grin with a deer in the headlights look. I’m covered in sweat from spending a day in the classroom in the summer heat.

But the students are holding onto me tightly, with both hands.

(Courtesy of Mathew N. Schmalz)

(Courtesy of Mathew N. Schmalz)

* * * * *

There has been a lot written recently about the challenges facing minority religious groups in India, Christians among them. As someone who researches Christianity in India, I can attest that those concerns are real and well-founded. But one of the most wonderful things about Sumanahalli is how it does represent cooperation among religious groups from across the spectrum. The threat to Sumanahalli now is commercial interests who want to buy the land for shopping malls and condominiums when the lease with the government expires.

As our time at Sumanahalli came to an end, I asked the Rev. Peter D’Souza, Sumanahalli’s director, to lead a brief prayer service for me and the Holy Cross students. After thanking God for the opportunity for all of us to join together as a part of the “Sumanahalli family,” D’Souza laid his hands on each of us in blessing.

As tears welled in my eyes, and in the eyes of the students, it was clear that we, too, had been touched by Sumanahalli and the wonderful staff, students, and patients who had welcomed us so freely and graciously, and with so much love.

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