Today, residence at Carville is purely voluntary. Patients can leave the premises whenever they like. Boudreaux recalls another time, however. "Patients who come here today cannot appreciate what Carville used to be like. It had a penitentiary atmosphere. Now the gates are wide open. Years ago people went through holes in the fence to get out. Patients were isolated, visitors discouraged."
The relaxation of the penal atmosphere at Carville only occurred in the 1960s when research finally changed physicians' attitudes about the communicability of HD. Doctors now believe that a person must have a genetic susceptibility to the bacteria which causes the illness before exposure will result in infection. Although constant contact in close quarters may increase the statistical probability of eventually contracting the disease to around ten per cent, those in occasional contact run virtually no risk whatsoever.
Staff members at Carville illustrate the low threat of infection even from frequent contact. No one working there has ever contracted leprosy, though fears of contagion were once so great that certain areas of the institution were placed strictly off-limits to patients. In those days patients used to joke about walking into administrative buildings to see who would jump out the windows.
Such gallows humor has all but disappeared now. Fears of instant contagion are gone, at least among people who know better, though the stigma surrounding leprosy remains. Boudreaux has seen the changes, kept record of them in his magazine, and done what he can to remove the stigma.
However, unlike most men his age, the 65-year-old journalist has little nostalgia for days gone by.
"The doctor he tell me I have leprosy and I tell him I prefer to die, but doctor say I can live well...live very well at Carville...I don't need to die."
Now in his mid-thirties, Tony learned he had HD five years ago in a Boston hospital. Sent to Carville more than three years ago for surgery on his ulcerated foot, he has lived there ever since. Though he initially dreaded going there, he now finds, despite his illness, that he lives quite well, just as his doctor once promised.
He invited me to see his room, where he offered me a beer, switched on his stereo, and continued to extoll the virtues of his community. Tony describes a lively social life of dancing, drinking, flirting, and serious romance. "Oh, yes," he laughs, with a sly wink, "there's a lot of romance between patients. When we're working or partying we forget the sickness. We have a good time. Most of the women here are older, but not all. We do whatever we want in our rooms, with complete privacy."
Of course, he admits, living in such close proximity creates unusual jealousy problems and complicates partner-swapping. "When a man and a woman are together here, the other men know not to touch her. But when the woman is alone, then they might try to move in on her and hope word doesn't spread," Tony explains.
Occasionally, patients circumvent this problem, more or less, by marrying. Married couples get to move into larger living quarters, full-sized apartments with kitchens and dining rooms. In contrast, Tony's simple square space with wash basin in one corner and bed in another hardly allow room for a lively jitterbug. Still he insists the dormitory is perfectly adequate for his needs, or at least sufficient enough to forestall his planning a wedding in the near future merely to raise his standard of living.
And overall, in spite of the isolation and pain of his illness, Tony seems quite content with that standard, with his life at Carville.
Steven Schorr '78, a former Crimson editor, is traveling through the United States as a freelance journalist.