The Decolonization of Carville

Carville, La., is the only center in the continental U.S. for the treatment of Hansen's Disease (HD), commonly known as leprosy. Its residents are daily contradicting HD's public image by responding favorably to new medical treatments, dispelling myths about the disease, and enjoying active social lives within the 336-acre compound.

(Author's note: The names Li and Tony are pseudonyms used to protect the identity of actual patients at Carville)

"All of a sudden, my friends at school started treating me differently. They stopped playing with me. They were not good to me. They weren't my friends anymore."

Li sat at the edge of her bed, eyes cast downward. Though she spoke evenly and matter-of-factly, her eyes murmured a deeper sorrow, deeper than her words, deeper than a child of 13 must usually bear.

When she and her family escaped from Vietnam in the mid-seventies, Li felt certain she had left the horrors of her childhood behind her. Like thousands of other refugees from her embattled country, she began a new life in a new land. Attending public school in Dallas, Tex., Li quickly made friends with her classmates, learning their games and customs and teaching them her own. Her assimilation proceeded happily, without a hitch.

Then came rejection. Worse than rejection. Ostracism.

In 1977, at the age of 11, Li noticed some numb spots and blemishes on her skin. Doctors diagnosed Hansen's Disease (HD).

Although drugs are now available to arrest the disease and render its effects virtually unnoticeable in many cases, Li reacted unfavorably to initial medical treatments. As her ailment spread, bumps and purple splotches veiled her attractive face.

Friends recoiled. They feared her appearance. Parents reinforced the fears, telling their children to keep their distance. In whispers, word was passed that Li's disease had another name, a name shrouded in mystery and misconception since Biblical times. Li had leprosy.

To receive adequate medical attention, Li had to leave her family and travel to Carville, La., where the U.S. department of Public Health operates a treatment center and longterm care facility for HD victims. The center is the only one in the continental United States.

Carville sprawls across 336 peaceful acres along a bend in the Mississippi River between New Orleans and Baton Rouge, functioning more as a self-contained community than a hospital. Though much has changed since the night in 1894 when a group of crafty sisters of charity used a barge to smuggle seven leprosy patients up river from New Orleans while telling suspicious residents of the nearby town they planned to establish an ostrich farm on the abandoned Indian Camp Plantation grounds, Carville still contains enough of a "leper colony" aura to frighten the most stoic newcomer.

Li says she was not afraid.

With a cheerful grin, she simply describes the hospital as "o.k.," and leaves it at that. As Carville's youngest patient, skipping through its pastel-pink corridors in pink jeans and a ruffled white blouse, her exuberance and optimism undoubtedly have some effect on the older denizens. Many of them have lived at Carville for decades, creaking through its paint-peeled corridors in wobbly wheelchairs. Does she cheer them with her smiles? Or do they look at her and fear for her future, seeing their own shattered features mirrored in her ravaged face?

For all their misfortune, most of those older patients are optimistic for Li. They know she need not share their fate. Medical advances made since the time of their affliction have given new hope to HD victims throughout the world. Carville researchers are responsible for many of the most important strides, particularly for developing the sulphone-based drug, dapsone.

A cheaply produced tablet free from serious side-effects, dapsone has become the world's chief method of combating leprosy. Although the bacteria causing HD display increasing signs of developing resistance to the drug, dapsone remains an effective means of arresting the illness when a patient suffers from the pure-tuberculoid strain, a less-severe type of HD. Victims with this form of illness can usually expect to lead perfectly normal lives without any of the scars and deformities ordinarily associated with leprosy, if doctors diagnose the condition at an early stage.

However, those afflicted with the more severe lepromatous strain do not always respond to dapsone. Since they may suffer loss of sensitivity and ulcerations of the skin which require surgical attention, many of these patients need to stay at Carville for longer periods of observation and care. Some never leave.

Li's strain straddles the borderline area between the two, sometimes displaying characteristics of the tuberculoid, sometimes resembling the lepromatous. Because of the negative reaction she has to sulphone-based drugs, Li needs close supervision at the moment. Thus she lives in the modern infirmary rather than the somewhat dilapidated dormitories provided for more permanent residents.

And her doctors doubt she will become one. Li has begun to respond to experimental chemo therapy, and her face is clearing up. While she may have to return periodically for treatment, Li will eventually leave Carville to live with her family in Texas again.

She looks forward to that day.

"Yes, I was afraid when I found out I had Hansen's. Afraid because I knew so little about the disease. If all you know is what you've read in the Bible, you're bound to be frightened. And that's all most people know. Hansen's Disease is nowhere near as contagious and communicable as most people think, but physical deformities arouse fear.

"Someone with this disease, even if it's totally inactivated, cannot go out and look for a job. Not if he admits to having Hansen's Disease anyway. Employers are afraid to hire you because of the reaction of other employees.

"If we could only eradicate the stigma, the fear, the misconceptions. The social stigma, the ostracism, causes more problems than the disease itself..."

To eradicate that stigma, Louis Boudreaux has worked as a journalist for 22 years. However, he has never had to worry about job discrimination, because he found fruitful employment within the confines of Carville.

As editor-in-chief of Star, a bi-monthly tabloid which reports world-wide developments in the battle against HD, Boudreaux oversees one of the most unusual operations in the publishing business. Every one of his 22 staff writers and production personnel suffers from some form of HD. Those who have not lost feeling in their hands do the typing and press work, while others write articles and perform whatever tasks their handicaps will allow.

With a circulation of 70,000, Star (not to be confused with the similarly named gossip magazine distributed in supermarkets throughout America) can hardly claim to mold public opinion. Boudreaux readily admits that the magazine merely reflects the enthusiastic efforts of amateurs to educate a woefully ignorant public as best it can.

But such ignorance, however detrimental to those with HD, is somewhat understandable, considering the rare occurrence of leprosy in this country. Although HD has existed at endemic levels for some time in other parts of the world, such as India or Central Africa, only some 3000 patients presently receive treatment for the condition in this country. Because the disease is impossible to detect in its incubation stage, health experts will double or even triple that figure when estimating the actual population of HD sufferers here. Even so, the number remains minute.

But Boudreaux and his staff plug ahead, hoping to reach whomever they can.

In his checkered sportscoat and thin tie, Boudreaux resembles any other well-healed businessman with an office on Main St. USA. He even belongs to Carville's own Lion's Club chapter, and he has the organization's insignia emblazoned on his desk neameplate to prove it.

While Boudreaux may not have had to scrape and claw in the marketplace to build his magazine, which is subsidized by a veteran's organization and operates without, overhead costs in a government building, he had other obstacles to overcome. And they become readily apparent upon closer observation of the executive seated calmly behind his desk.

Boudreaux is blind; his hands are gnarled and almost dysfunctional; his face is slightly disfigured. He learned he had HD when he was 19 years old. Since that day in 1934, he has lived and worked at Carville.

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.