Living out their lives with leprosy
After decades at hospital in Sri Lanka, patients could leave at any time ... but have nowhere to go
HENDALA, Sri Lanka — Vithana Gunathilake’s motto is tattooed across his chest. The ink faded during his years here, but he still believes in the message: Do or Die. To prove it, he cradles a harmonica with his damaged hands and starts playing.
For seven decades, his home has been the Hendala Leprosy Hospital near Sri Lanka’s capital of Colombo. When he and the nearly 40 other patients here eventually die, the leprosy hospital will close for good. Until then, it serves as a sanctuary for aging men and women with nowhere else to go.
“I’ll be here until my death,” said Gunathilake’s friend, Abdul Hassaan, 59. He has four children, but they don’t visit. “For this disease, they are very frightened,” he said, pointing to where his leg used to be.
Most patients at Hendala have similar stories of being abandoned by their families after leprosy ruined their bodies. The disease damages nerves, skin, limbs and eyes. Most people are naturally immune to the leprosy bacteria. And even if caught, the slow-growing germ can take years to cause symptoms.
Hassaan lost his leg to an infection. The fingers on his left hand are mostly stumps, and he can’t see very well.
Hassaan chose to remain at Hendala the past 20 years to live with people who understood the way he looks, rather than fear him. He found a girlfriend in one of the female wards. “I’m living very happily. I never think about my previous life,” he said.
Hendala at first was more like a prison than a sanctuary. “If we ran away, the police would catch us and bring us back,” recalled Edward Alwis, 87, the hospital’s oldest patient. He remembers being locked onto an ox cart and packed off to the facility in 1943, at age 14.
“You were a non-person, not beloved by God,” said historian Lodewijk Wagenaar about attitudes toward leprosy when Hendala opened in 1708, when the Dutch controlled Sri Lanka. In biblical times leprosy was seen as curse.
Fewer leprosy hospitals exist today because there’s not much need for them. If the disease is caught early enough — discolored patches and sores on the skin are early signs — a multidrug therapy developed in the 1980s with three antibiotics can usually cure leprosy in six to 12 months, although any deformities are permanent.
Hendala’s patients can leave whenever they want, but few do. “They’re in their late 70s or 80s, and most of their relations are dead,” said Marina Joy Sabanathan, 73, a retired physician who worked at Hendala in the 1970s.
The band at Hendala Leprosy Hospital, near Colombo, Sri Lanka, rehearses.