Before coming to India, I basically considered leprosy an ancient disease – a repugnant relic held by those of Biblical times and not pertinent to the world in which we live today. I suppose that objectively I could have reasoned that it wasn’t obsolete, since I have a wonderful friend (JF) who shared with me his stories of visiting the leprosy colony on one of the small and otherwise uninhabited islands of Hawaii. Even then, I remember feeling astounded that leprosy was still alive and well (in an ironic way) and could have easily assumed that all of the world’s leprous had been quarantined to that one small island in Hawaii.
Au contraire, Rebekah. As it turns out, leprosy is not only alive and well but is far more prevalent than I had preconceived. Leprosy, or Hansen’s disease, affects people all over the world and continues to spread daily. In 2009 there were more than 240,000 new cases worldwide. A significant portion of those were in India, where over 50% of all leprosy patients reside, but significant leprous populations exist also in Brazil and Indonesia, and smaller populations dot the rest of the globe – China, Angola, the Philippines, Madagascar, Tanzania. There are even a few hundred cases reported each year in the United States. While all of the mechanics of communication are not well understood, infection generally requires significant exposure (most new cases live for years near others who are infected) and genetic predisposition.
Leprosy commonly affects the nerves, skin, and mucous membranes. It may also affect the eyes, muscles, and other areas of the body. It begins with light-colored lesions on the skin, where the bacteria tend to reside. If left untreated, it spreads throughout the body, eventually causing permanent nerve damage, stiff joints, blindness, and loss or dissolution of fingers, toes, facial features and limbs. While because of nerve damage the leprosy-affected may not feel the physical pain of all of these effects, the emotional and mental anguish can be just as damaging. Many leprous are rejected both by society and by their families. They are left abandoned to beg on the streets or live with others “of their kind” on colonies. They face a tremendous negative social stigma that marginalizes them from the neighborhoods, social circles, and markets in which they used to function normally. In essence, they relive the ancient curse, metaphorically walking through their former lives shouting the Biblical refrain: “Unclean.”
Today, leprosy is both detectable and curable thanks to a multi-antibiotic treatment provided free of charge by the WHO. Once incurred, however, the effects of the disease are irreversible, even after the leprosy-causing bacteria are eradicated. Leprosy is generally not fatal – in fact, in some ways it is the slow, living death that has made so many horror films. In the end, its victims fall to other infections, including some that begin as sores and lesions in limbs they no longer feel. These slowly develop into bone-deep wounds, opening the biological conduit for other harmful bacteria.
That being said, there is hope in this otherwise gloomy scene. Through them I, as so many others before me, am a personal witness to the resiliency and power of the human spirit despite incredible adversity. They continually move onward and look upward, showing true courage and humility. Like all of us, those affected by leprosy are real people with real thoughts, hopes, dreams, and dilemmas. They are not their bodies. And they prove that to me daily. Like my nearly-blind, nearly-deaf friend at Bethel Nagar. I do not know his name. Every time I ask, a new one is given by those around him. But he loves to dance and joke, sings “Hallelujah” nearly continuously and has about the funniest laugh I have ever heard. Or Dorei Raj, my lovely tailor friend, who beams each time we arrive and whose equally-lovely wife, also a victim of leprosy, pulls up their only two stools so we can sit while she graces the nearby stoop. She is beautiful. Or the dozens of patients who press what remains of their hands together in front of their chests to welcome us, often with a toothless grin. “Vanakkam.” Welcome. Or the scores of their children, who despite living under the same social stigma are still just kids and love to play with anyone and anything. They are all wonderful.
In Biblical times, the leprous were sent “outside the camp,” banished for their malady from the rest of the presumably “clean” society. How lucky I am to live among them today. To me and so many others, they are anything but unclean.
Little Girl, Big World 
