America no longer needs the Gillis W. Long hospital–known in medical circles and around these parts simply as “Carville.” Thanks to drugs that were tested on patients like the Harmons, leprosy–now called Hansen’s disease–is rare and treatable in the United States. In keeping with the times, Carville will soon be converted into a state boot camp for troubled teens. Roughly half its patients have left in recent months to re-enter society. But as Carville’s days dwindle, there still remain some 50 older patients so petrified of the future that they recently staged a protest, “marching” in golf carts to the cemetery out back where friends and loved ones are buried. They are the living remnants of a time when leprosy patients were snatched from their families and taken in hearses or handcuffs to Carville, denied the right to vote or even ride a public bus. The cure for leprosy, found in the 1950s, means they are no longer contagious. But the physical and emotional effects of the disease linger. “They owe this to us,” Harmon says. “They stole our freedom. They locked us up, and there really was no reason for it.”
In truth, the relationship between Carville and its patients is far more complicated than that. Built in the 1890s on the old site of a 300-acre sugar plantation along the banks of the Mississippi, Carville’s institutional buildings sit among lush lawns and pecan trees. A modest federal monument in a courtyard attests to the first generation of those who died here, most remembered only by aliases and numbers. The population reached its peak in the 1950s, when 400 patients, most disfigured by the disease, roamed the grounds. Segregated from the staff, even in church, they underwent every experiment doctors could dream up; Harmon remembers being locked in a fever-inducing chamber, where his temperature soared until he passed out. The only way out of Carville was to test negative for the disease for 12 consecutive months–or by sneaking past the guards.
It was the hospital’s doctors who finally tamed the disease, which is caused by a microbe and spreads through the respiratory system. Sufferers do not actually lose their skin, as is commonly believed, but their nerves lose sensation, causing arms and legs to lose feeling and fingers to contract into claws. Beginning in the 1950s, doctors discovered a combination of drugs that sent the disease into remission. The problem was that in trying to keep the patients safely locked away, doctors had convinced them that no one else would have them. “They were told that the only treatment was in these places, and that the community would be scared of them,” says Mary Heroman, the hospital’s social worker for the last 30 years. “We developed a lot of dependency.” Staff members who worried about what would happen to the patients once they left tacitly encouraged them to stay at Carville. “I wanted to leave–I did,” says an 83-year-old man with clawed hands who’s been at Carville since 1940. “But I was afraid that I wouldn’t make it out there.” Those who did leave were told they could come back to Carville any time. The Harmons decided to “retire” at Carville so they could get round-the-clock care for the ongoing effects of the disease, like withered hands and foot ulcers.
But the government doesn’t see Carville as a retirement home, and its days as a necessary institution have long since passed. The caseload in recent years dipped under 150. The hospital’s research lab in Baton Rouge doesn’t need live patients anymore; much of the testing is done on Louisiana’s armadillos, many of which carry the leprosy microbe. Patients have been offered an annual stipend of $33,000 a year if they leave or the option of staying in a single building on the grounds of the hospital, without full-time staff to help them. The most severely disabled will be moved to a new clinic in Baton Rouge.
But many of Carville’s last residents haven’t seen their relatives or the homes they left for decades. Carville gave them a sense of belonging that the world outside stripped away with one, hated word: “leper.” “This was a healing place, not just for the disease but mentally too,” says 80-year-old Theresa. She and her husband, Sam, have both gone blind; he was a jazz musician before his fingers became shrunken and crooked. “When you come here, the love and help you get make you forget about the problems of the disease.” The little village of Carville itself became a kind of extended family: since many locals wore the hospital’s khaki uniforms, they were more accepting than folks in nearby Baton Rouge. James Carville, the political consultant whose family gave the town its name, remembers watching movies with patients in the hospital’s theater. In fact, one of his father’s best friends was a patient. “There was no stigma in Carville,” he recalls.
The stigma elsewhere is fading fast, but men and women who’ve spent their entire lives at Carville can hardly be expected to believe it. Some former patients have rallied to the defense of those left behind. Jose Ramirez, now a 51-year-old social worker in Houston, says the older patients were like surrogate parents to him when he arrived at age 20. “The government had a policy that these people had to go to a hospital, and in doing that took their identities,” says Ramirez, who has asked the government to make Carville a national monument. “Now it wants to do that again.”
Others say the government is finally doing its outcasts a favor. “I spent the best years of my life there, and I didn’t want to spend the rest of my life there,” says 64-year-old Rachael Pendleton, who came to Carville at 14 and stayed for a combined 32 years before taking the government stipend. Pendleton says the patients who remain at Carville used the “L-word” to scare society into giving them a free place to live, complete with golf course and pool tables. “They should get out if they have any dignity and self-respect,” she says.
No one who knows Johnny Harmon would say he lacks for either. Despite stricken hands and worsening emphysema, he’s still painting landscapes and plans to keep writing articles for The Star, the hospital’s quarterly newspaper, until the presses are stopped forever. He even wrote a book about his life with leprosy, titled “King of the Microbes.” Last week, he buried his wife in the Louisiana town where she was born, the town that once cast her out. Someday he’ll join her there. But for now, in these last days at Carville, Johnny Harmon figures he’s right where he belongs.
