From ONE Magazine
Damien Leprosy Institute: Home for the Rejected
text and photos by Cheryl Sheridan
My brothers son cannot find a wife, laments Rosa. The 60-year-old woman looks at her hands and feet, which have been eaten away by leprosy, the source of her emotional and physical pain. Although Rosas family has rejected her, her personal dignity has been restored.
For more than 27 years, Rosa has been a resident at Damien Leprosy Institute, a hospital for people with Hansens disease in Indias southwestern state of Kerala. The program is supported by the Syro-Malabar Diocese of Trichur with funds provided in part by CNEWA.
Rosa begins her day in the fields supervising the women who come from neighboring villages to work. In the afternoon she works in the hand-loom shop weaving cloth used by Damien and other institutions supported by the diocese.
Damien Institute, which was founded in 1953, is named after Damien de Veuster, the Belgian priest who, in 1873 at the age of 33, went to the Hawaiian island of Molokai to care for the people with Hansens disease who had been banished there. Eventually he contracted the disease (named for the Norwegian scientist who discovered the virus in 1873) and died at 49, a martyr-model.
The institute, which is situated in the hills 10 kilometers from Trichur, is staffed by a local religious community: the Sisters of Nirmala Dasi (the Servants of God). Its 185 acres are planted with rubber, coconut and banana trees: rice grows in the low-lying areas. Vegetables grown in a garden within the compound, tended by rehabilitated patients, supplement the residents diet.
There are other projects at Damien that help push it toward greater self-sufficiency.
A few older women tend families of goats with great dedication. In the afternoon it is not uncommon to see a woman chasing her goats home from the grazing areas while wielding a stick to keep them out of nearby gardens.
One young woman, Deepa, is just 19 and has virtually grown up at Damien. I remember Deepas mother carrying her on her hip, recalls Sister Elsy, who has been at the institute for 13 years. Now, working at the sewing shop, Deepa has a sense of purpose by contributing to the community.
Although Deepa is not in the advanced stage of the disease she gets sores on her feet.
Instead of coming and going to and from Damien, I just stay here, she says, adding that her family visits her. Two of Deepas brothers also have Hansens but the elder brother and sister are healthy.
As fortunate as Deepa and the other 145 patients are at Damien, the sisters and the institutes director, Father John Moolan, would like to see the day when they are out of business. It is a goal of the Indian government to eradicate Hansens disease by the year 2000. Damien Institute has made great strides in that direction, but new cases continue to appear.
As part of the National Leprosy Eradication Program initiated in 1955, Damien Institute follows the S.E.T. (Survey, Education and Treatment) plan. Every morning two sisters and four young aspirants (women who wish to join the order) continue the endless survey work, which is vital to the eradication effort. House by house, the sisters look for potential new cases and keep track of those already diagnosed. Each day they try to visit 20 households in one of the 17 villages they are currently tracking. When a new case is discovered, they give the new patient a first months dose of medicine and advise the individual to come to Damiens outpatient clinic.
Much of the sisters energy is spent in education. They try to convince parents to bring those children who are infected to the doctor just as they would for any other illness. Hansens disease is curable, especially when treated in the early stages. As Dr. Frans Hamerijickx said in 1955 when the first Leprosy control center was opened in Tamil Nadu, an early case of leprosy is no more a tragedy; what is a tragedy is no treatment in early leprosy.
People no longer think leprosy is a curse from God, said Father Moolan, but an aversion still remains.
Fear that Hansens disease is hereditary, highly contagious and incurable affects the general population, educated and uneducated alike. Hansens disease is not hereditary and it cannot be passed from mother to baby during pregnancy or childbirth. It may be seen more often in the same families (as in Deepas case), but this is likely due to close and prolonged contact, especially in the crowded and unsanitary environments in which the virus thrives.
Only 10 to 15 percent of the patients are capable of spreading the disease to others when the germs are released by coughing or spitting just like the common cold or flu. Furthermore, more than 90 percent of all people are unable to contract the disease at all because of an inherent immunity.
There are two forms of the virus. One is infectious, but not contagious, while the second is contagious only for those with low resistance and close, long-term contact with a carrier. In the more common non-communicable type, nerve damage causes loss of sensation and motor power.
With the advent of multidrug therapy, Hansens disease is 100 percent curable in the initial stages.
In addition to the drug treatment, physical therapy can prevent the need for surgery. At Damien every patient comes to see Sister Theresiamma at the physical therapy department daily. A hot wax massage is the treatment for the common problem of claw hands, which develop as a result of lost agility.
Physical therapy also provides a chance for the patients to help each other and participate in their own rehabilitation. One by one, they come and dip their limbs in a wooden vat of hot wax. When sufficiently coated, their limbs are wrapped in a vinyl sack, with the help of a co-patient, to contain the heat, allowing it to soothe the numb limbs. And in a scene more like a social gathering than a therapy session, they sit around a table conversing while massaging their own hands with all the strength they can muster. This makes their fingers more supple and stretches out their stiff digits.
Posters along the national highway near the Damien Institute remind passersby that Leprosy is Curable! But the fear of becoming an outcast hinders those afflicted from seeking treatment. Once a person becomes a patient at Damien, the family often comes under pressure from friends, neighbors even relatives to accept the stricken one no longer, even though treatment is best for all. In the advanced stages, the afflicted person really does become a burden to the family or society.
A young man who spends his days pacing the grounds of the hospital says, I went home after the surgery, but my parents told me to leave and never come back, because I was a patient here.
His hand had been bandaged pins had been implanted in his fingers and attached to a brace with a hinge. Each day the hinge was turned a little to straighten, slowly, his claw hand. After treatment, he would have been able to return to his family. But the stigma of having any association with Hansens disease was too great for the parents to bear.
Others have different difficulties while trying to maintain a normal lifestyle. One man with fresh bandages on his feet expresses his frustration, I come, stay for one or two months and get well so I can go back to work. But after a month, the sores come again and I have to return. He is married and has a child. He looks to Sister Elsy and says, over and over
what kind of life is this?
The sisters, pillars of strength, attempt to offer solace to people in very difficult circumstances. They listen and pray. They try to set a good example of love and optimism. But it seems the rehabilitated patients who have given up trying to live in the outside world have found peace at Damien. They are happiest.
Many have found fulfillment in serving others who still struggle. One man has become a sort of nurses aide. Every morning he pushes the patients with severe ulcers in their wheelchairs to the clinic so they can have their bandages changed. He also assists the sisters and doctors in cleaning and dressing the wounds.
At 9 A.M., the patients line up on the bench outside the clinic for a difficult daily chore. Some watch as disinfectant is swabbed in the wounds reaching deep into their feet. A few are expressionless, some look with wonder and others with disgust to see how their bodies are eaten away by this disease. Slowly the open wounds are wrapped with the bandages the patients themselves wound into neat rolls. The smell of pungent disinfectant hangs in the humid tropical air.
It is hard to look at them and know that sometimes it causes pain, Sister Elsy says. You just have to concentrate on the task and not think too much. By the time the last patient has new bandages, it is time for lunch.
Food preparation is about the only thing in which patients do not participate. All morning, kitchen workers, aspirants and sisters chop, stir and cook food for the day. At 1:30 P.M., buckets of soupy rice and pots of vegetables (and a meat dish on Sundays) are portioned out for each patient. The meals are loaded onto a cow cart for distribution to each house and hospital ward. After lunch, patients enthusiastically wash the food containers.
However, rehabilitated patients work at the orthopedic workshop. Panja, 69, has been at Damien for 34 years. For 30 of those years he has been a cobbler. Although they look like normal shoes, Panjas creations are special microcellular rubber is used for the soles. This spongy material helps to keep the skin soft and supple, thereby preventing ulcers from forming on the hard dry feet. Panja makes fashionable styles for ladies and gents. He even does custom jobs for those with special needs.
Sometimes amputation is the only way to stop the disease from consuming a person. In those cases, the institute designs and makes artificial limbs for the patients. One sister and a rehabilitated patient work side by side creating new ways for others to walk again.
Working together to achieve greater independence is the unspoken philosophy of the Damien Institute. It is out of practical need, rather than theoretical discourse. The special blend of love and care gives these people discarded by society a sense of belonging. The sisters, the lifeblood of the community, work among the patients, treating them with a respect they could never dream of in the outside world. Constantly contradicting its title as an institution, Damiens daily routine offers stability rather than regimen. The patients work provides purpose rather than toil and prayer brings hope and peace.
Cheryl Sheridan is a freelance photojournalist based in India and Taiwan.