Miscellany — From the June 2013 issue

The Separating Sickness

How leprosy teaches empathy

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Eddie Bacon was a forklift operator at Trident Seafoods in Akutan, Alaska. In the summer of 1999, he developed mysterious rashes on his hands, arms, and legs. He visited a doctor, who gave him a variety of ointments, but they did nothing. He grew weak, lost weight. He had trouble seeing. No longer able to earn a living, he moved in to his parents’ house in central California. There, at a New Year’s Eve party in 2000, he passed out, and his parents took him to the emergency room. He had green blisters on his hands, his weight had dropped to ninety pounds, and he couldn’t stand up by himself. The medical staff at the hospital regarded Eddie with puzzlement and dread, asking his parents to put on gloves, masks, and gowns when visiting him. Finally, after four weeks, an infectious-disease specialist solved the mystery. Eddie had leprosy. Although a quarter million new cases of leprosy were diagnosed worldwide in 2011, only about 173 of those were in the United States; it’s no surprise Eddie had a hard time getting a diagnosis. Once his symptoms were explained, though, his doctors could prescribe a venerable course of treatment: in June 2001, they sent him to the nation’s largest leprosy clinic, which had recently relocated to Baton Rouge from its historic home in Carville, Louisiana.

The Louisiana Leper Home was founded in 1894. Infected residents were provided free room and board and medical care, but for the first fifty years of the home’s existence, until the rules progressively relaxed in the late 1940s and early 1950s, they were denied the right to vote, to marry, to live with an uninfected spouse, or to leave the grounds. Children born to residents were taken away shortly after birth and put up for adoption. The Carville facility has been federally run since 1921, and the government allowed for the construction of a golf course and a lake, but there was also a cyclone fence topped with three rows of barbed wire and a jail to punish those who left the grounds without permission. In the 1950s, even after a cure for the disease had been found, escapees were still brought back in iron shackles.

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is a contributing editor of Harper’s Magazine. Her most recent book is The Faraway Nearby (Viking).

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