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June 2013 Issue [Miscellany]

The Separating Sickness

How leprosy teaches empathy

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.

Leprosy is really two diseases: the physical effects and the social response to them. In Hawaii, where leprosy was endemic in the nineteenth and twentieth centuries, it was called the “separating sickness.” Once diagnosed, Hawaiian sufferers were hunted down like outlaws and offered a choice of exile or death. Those who chose exile were sent to a bleak camp built below the great cliff at Molokai (the leper colony there didn’t close until 1969). And Hawaii wasn’t alone. For centuries, from India to Iceland, people with leprosy — most don’t like being called lepers — were ostracized. Only in the past sixty years have even a minority of leprosy patients received truly humane care.

The change started when doctors realized that leprosy, contrary to long-standing belief, is very nearly the least contagious contagious disease on earth: in more than a hundred years of Carville’s operation, no employee ever caught leprosy from a patient. Ninety-five percent of us are naturally immune to the disease, and the rest have a hard time catching it. If you contracted leprosy at any point before 1941, your illness would not have been treatable, but your prognosis would not necessarily have been dire. If you were very lucky, your immune system might eradicate the bacterium on its own, or you might manifest only skin problems — lesions, eruptions, thickenings, numb spots — and little more. (Then as now, many with untreated leprosy live decades beyond diagnosis, into old age.) If you were less lucky, you might endure the collapse of the cartilage in your nose, an infection of the throat that could require a tracheotomy, or a permanent swelling of the face called leonine facies. Worst of all, you might suffer peripheral neuropathy — an absence of sensation that can cause patients to lose fingers, toes, and feet; blindness; and a host of other problems.

In 1941, a highly toxic tuberculosis drug, Promin, was shown to eradicate the bacterium that causes leprosy. Promin was tested on patients at the Leper Home, who improved dramatically; it was called the miracle at Carville. Painful Promin injections were followed by dapsone pills, and by 1981 an even more effective multiple-drug solution was found. The disease is universally curable now with a year or two of treatment. If you are diagnosed early in countries such as the United States, you’re likely to be disease free and left with no evident disfigurement or damage. The problems of leprosy now lie elsewhere — in the lasting stigma against sufferers, in the lack of resources for treatment in the developing world, and in the very rarity of the illness in the developed world, where doctors may not diagnose it in time to prevent permanent harm.

Eddie Bacon was unlucky. He had no natural immunity. But he was also lucky: he was sent to Louisiana at a time when he could be treated for both the bacteriological and the social effects of his disease. After his initial treatment, Eddie returned to Baton Rouge regularly for therapy to teach him how to take care of his body, which has suffered some irreversible damage.

“It was a nice place,” he recalled when I spoke with him in 2010. “I was scared they were going to treat me bad, but when I went there, those people were touching me, they were hugging me, those doctors and nurses.” That physicality made him feel less like an outcast. At the clinic in Baton Rouge, he said, “it’s like I have a second family.” Eddie told me he’s known as a “miracle guy” because he survived one of the worst modern cases of leprosy recorded in the United States, one that struck harder and moved faster than the disease usually does. He’s had to have both feet amputated, has scarring on his hands and arms, lost an eye (it went blind and scared his nieces, so he had it replaced with a prosthesis), and, like many others with the disease, lost his eyebrows. But he is alive and he is free — and in December 2010 he got married.

To get to Carville, you drive northwest from New Orleans, leaving the highway after an hour for back roads through swampland where people live in trailers and old wooden shacks. Chemical-manufacturing plants line the road, fenced-off palaces several stories high, wreathed in cold lights, giving off emissions that sharpen the smell of the air. Past a few of these plants, the road dead-ends at a T junction near a gas station, a Baptist church, and a cemetery — all there is of the townless town of Carville. If you turn right and drive along the high levee that hides the Mississippi, you arrive after a couple of miles at what is now called the Gillis W. Long National Guard facility, set on 350 acres of flat green land dotted with handsome old oak trees. Near the entrance is a cluster of white buildings — a colonnaded plantation manor surrounded by houses, chapels, and industrial structures. A few patients still live at the center, and there is a museum of memorabilia from the days when hundreds of people lived and died here.

Many relics of the Leper Home remain: the covered walkways from building to building on which patients traveled on foot, on bike, and by wheelchair; the 1930s-era hospital that became a hotel (in which I was lodged); the cemetery. The museum displays ledgers and registry books; long, hand-knit bandages from the Ladies Auxiliary; antiquated medical equipment; a wheelchair made up as a Mardi Gras float; a pair of iron shackles; and numerous photographs of the residents at work and play.

On my first visit to the museum, in late 2009, I met a small, vibrant octogenarian with twisted, shortened fingers. Mr. Pete, as Simeon Peterson likes to be called, came to Carville as a patient in 1951, when he was twenty-three, and has lived here ever since. After years as a caretaker for those sicker than he, Peterson now greets visitors to the facility. He couldn’t imagine leaving Carville. Where would he go? Most of his immediate family had died, and he was hardly ready to venture out into the world on his own.

It was lonely now, he told me. He thought the best time was his first decade as a patient. Back then, Carville had its own movie screenings, a newsletter, a baseball team, and enough patients to support a number of other clubs and activities. After the disease was rendered a fully treatable, outpatient disorder, the community dwindled. Most of those who remained were older patients damaged by the disease earlier in life, and then by years of isolation.

A few decades ago, there were hundreds of patients at Carville, along with the nuns, medical staff, cooks, janitors, and others. When I first visited, sixteen residents remained; by the time I returned in early 2010 it was down to ten, and today there are six. The silence at Carville is profound. Only the occasional squadron of National Guard recruits marching and roaring in unison, the bugles for reveille, and the songbirds in the trees made any noise. As I wandered the grounds, I saw the name stanley stein on the sign for a U-shaped entry drive. He has his own exhibit in the museum, one that makes clear both the power of the community and the depth of isolation at Carville.

Stein worked as a pharmacist in Texas until, in 1929, he saw a doctor about some mysterious lesions he’d developed. The doctor reported him to the state board of public health. Although his symptoms were mild, he was locked up in a hospital isolation ward for several weeks, then packed, under escort, onto a train for New Orleans. An automobile took them the rest of the way, along the rutted road to the former plantation tucked into one of the Lower Mississippi’s bends.*

Stanley Stein was the pseudonym that Sidney Levyson took upon entering Carville. “Have you decided on your new name, young man?” a nun named Sister Laura asked him when he arrived, in early 1930. “I was not just a sick man entering a hospital,” Levyson recalled in his memoir, Alone No Longer. “I was a lost soul consigned to limbo, an outcast, and I must spare my family from any share in my disgrace.” He stayed at Carville for thirty-seven years, the remainder of his life, starting a newsletter, the 66 Star, that advocated for the rights of those with leprosy in the town and around the world, and he persuaded the government of Louisiana to repeal its forcible-quarantine law. Levyson also campaigned to have the name “leprosy” replaced with the less fraught “Hansen’s disease,” after the scientist who first identified Mycobacterium leprae — a change that has since caught on among scientists and doctors, if no one else. When he died, in 1967, he was buried not in Carville but in San Antonio, in his family plot.

Thomas Gillis, a researcher at the National Hansen’s Disease Programs (NHDP) in Baton Rouge, told me he thinks of M. leprae as something of an invalid itself. “Most geneticists feel it’s going through a degenerative process, losing parts it doesn’t need,” he said. The bacterium is delicate and slow. Because it doesn’t cause symptoms until years or decades after it’s contracted, patterns of transmission are still obscure. Unlike almost all other bacteria, M. leprae cannot be grown in the laboratory, putting ordinary research methods out of reach. Whereas some bacteria reproduce every twenty minutes, this one reproduces once every two weeks or so, and it dies shortly after being taken from living tissue. You can get it to infect the hind feet of laboratory mice, but the only naturally susceptible animal is the nine-banded armadillo, whose low body temperature is an encouraging home for the fragile bacterium; as many as 10 percent of all the nine-banded armadillos in southern Louisiana and Gulf Coast Texas may be infected. A necessity of leprosy research in the United States involves paying trappers or sending out lab personnel to drive along the levees at night to scoop up armadillos in big nets. Dozens of the creatures reside in the armadillo quarters at the NHDP’s research center, waddling along as naïvely oblivious as any vector could be.

Today, most leprosy research focuses not on the bacterium but on patient care. The disease can ravage the skin, but more devastating are its effects on the nerves, particularly those in the hands and feet, which it can cause to swell in their sheaths and strangle from lack of blood, leading to numbness. The eyes may be damaged if the nerves that cause blinking or those that relay pain and irritation fail. Without blinking, the eyes are not kept lubricated and clean; without pain, irritants are not felt, or a hand rubbing at the eye can scratch the cornea.

It used to be thought that tissue damage was a mysterious aspect of the disease itself, “bad flesh” that was somehow self-destructive, a belief so entrenched that the Wikipedia entry for leprosy featured the bizarre and unscientific phrase “auto-amputation,” as though digits fell off like antlers or autumn leaves, until I changed it — twice. But in the 1950s, not long after Promin and then dapsone began changing everything at Carville, a doctor named Paul Brand noticed something unusual about the boys with leprosy he had treated in Vellore, India, while working as a missionary: patients were showing up with further injuries even after they had been cured.

Brand soon discovered that they were injuring their hands and feet in the course of everyday activities that the rest of us survive unscathed. A young carpenter he’d operated on, happy to be able to hold a hammer again, was oblivious to a splinter on the handle that ate into his palm all day. A farmer was hurt by his hoe, whose handle had a jutting nail. (At Carville, Levyson once badly burned his hands in scalding water from the tap.) Feet, Brand found, were even more prone to injury: without the little adjustments we make in gait and shoe fit, sores arise and then become infected. And in a truly awful discovery, Brand and his Indian patients found that fingers and toes that inexplicably vanished overnight had been gnawed off by rats. From then on, the doctor gave each of his departing patients a cat.

For Brand, all this was revelatory: although his findings were grisly, they suggested that leprosy was far more treatable than previously thought, not only by bactericides but by training and educating patients on how to cope with the long-term effects of the disease. In his book The Gift of Pain, Brand writes about arriving at

the theory that painlessness was the only real enemy. Leprosy merely silenced pain, and further damage came about as a side effect of painlessness. . . . If we were right, the standard approach to leprosy treatment addressed only half the problem. Arresting the disease through sulfone drug treatments was not nearly enough; health workers also needed to alert leprosy patients to the hazards of a life without pain. We now understood why even a “burnt-out case” with no active bacilli continued to suffer disfigurement. Even after leprosy had been “cured,” without proper training patients would continue to lose fingers and toes and other tissue, because that loss resulted from painlessness.

Brand went on to become the director of rehabilitation at Carville, where he worked from 1966 until his retirement in 1986. He continued his work as a surgeon there, pioneering tendon transfers that would restore function to “claw hands,” a common effect of leprosy, but he also taught patients about the dangers of insensibility and the ways to compensate for it. He wrote that he felt like he was “introducing the boys to their own limbs, begging their minds to welcome the insensitive parts of their bodies. . . . They lacked the basic instinct of self-protection that pain normally provides.” Pain is what we feel when something has gone wrong, when our body has been neglected or mistreated. The people at NHDP today talk about “protective sensation,” the feeling that allows healthy people to take care of themselves and warns them before sensation slides over into pain. Just as we relace our shoes before we get a blister, let alone an open wound, so we feel before we feel pain. The NHDP doctors teach their patients to take care of themselves with an empathy born of imagination and intention: to love their own now alienated bodies as they might the body of someone else entrusted to their care.

Brand concluded that “shared pain is central to what it means to be a human being,” but we are a society that values the anesthetic over pain. We hide our prisons, our sick, our mad, and our poor; we expend colossal resources to live in padded, temperature-controlled environments that make few demands on our bodies or our minds. We come up with elaborate means of not knowing about the suffering of others and of blaming them when we do.

Choosing not to feel pain is choosing a sort of death, a withering away of the expansive self. When Robert Jay Lifton went to investigate the psychology of survivors of the atomic bombings of Hiroshima and Nagasaki, he coined the term “psychic numbing” to describe the survival strategy of dissociation and apathy — “a diminished capacity or inclination to feel.” In such extreme circumstances it was necessary or at least understandable, but even there Lifton called it “dehumanization” and cautioned that it “comes to resemble what has been called ‘miscarried repair.’ ” He compared it with immune disorders that begin by eradicating outside elements and then turn on the body itself. Decades later, when he looked at the numbing of those who used the atomic bombs and those of us in whose name they were used, he reverted again to medical metaphor: the cordon sanitaire, “a barrier designed to prevent the spread of a threatening disease, the ‘illness’ we block off in this case being what we did in Hiroshima.”

We think of kindness as an emotional quality, but it’s also an act of imagination, of extending yourself beyond yourself, of feeling what you do not feel innately by invoking it. This is pretty instinctive when we watch a child skin her knee, perhaps less instinctive when we read statistics on Haiti or Syria and have to translate them into feeling. You could call this feeling love, for we suffer with and for those we love and we seek to protect them from suffering.

Imagination enlarges us — as though our nervous systems could be made vast and at home in the world, if not at ease with its cruelties and losses. Comfort is dangerous. You can be overwhelmed by suffering, as relief workers sometimes are, and your ability to imagine and engage is finite — as anyone who deletes all those emails urging us to act for prisoners or polar bears or disaster victims knows.

Daniel Ellsberg decided that stopping the war in Vietnam, whose hundreds of thousands of deaths became real to him after he saw some of them firsthand, was more important than his own well-being, and so he risked his freedom and gave up his government career to expose the truth. In a 2009 documentary film about his actions as a whistle-blower, Ellsberg said that after he released the Pentagon Papers in 1971, his co-workers at the RAND Corporation treated him “like a leper.” In his memoir, Secrets, Ellsberg recounts one of his colleagues’ telling him that he agreed with the leak in principle but not in practice. Publicly supporting Ellsberg, he said, would have forced him to “renege on . . . my commitment to send my son to Groton.” The colleague had weighed many sons’ violent deaths against his son’s prep-school education and his own career, and the latter remained realer and more compelling than the former.

Up close, aggressive measures are required to be impervious to suffering; you have to convince yourself that people deserve what they’re getting, that their suffering has nothing to do with you. Our capacity for empathy is why the reality of war is usually kept from us or delivered in measured, manipulative doses — our wounded, perhaps, but not theirs, or those of our wounded who make for uplifting stories, but not those who are severely mutilated. And we face choices about how we live, because we are implicated.

Sometimes I’m tempted to bemoan the abundance of suffering in the world and leave it at that. But there is also a constant supply of kindness in circulation — or so I came to believe after spending time in January 2010 at the Hansen’s disease clinic in Baton Rouge where Eddie Bacon went to be treated. The clinic occupies the fluorescent-lit, fake-wood-paneled second floor of a medical building, a labyrinth of rooms that wrap all around the elevator bank and are abuzz with activity.

Since treatment of the bacterium is now simple, the bulk of the clinicians’ work involves teaching the patients how to take care of themselves after they are cured. Pam Bartlett, a social worker, meets with those just beginning therapy — she’s had to talk several out of suicide — and then keeps track of them throughout their treatment. There’s a surgeon on staff, Ronnie Mathews, a pupil and disciple of Paul Brand. Many patients get fitted for special shoes, built or adapted to protect their feet from their own insensibility — a shy young man named Jonathan Starks was in the shoe-making room on the day I visited, preparing to take over a trade his grandfather had started. All treatment is free.

I also met Barbara Stryjewska, the clinic’s chief medical officer, a merry redhead in high heels who tends to touch and hug and tease her patients. She showed me an astounding photo album of them and their afflictions before and after treatment, along with images of an amputation. (She seemed not to consider at all how this might look to an outsider.) When I met her she was visiting with the Thompsons, a Cajun couple who told me how frightened they had been when Vicky Thompson was diagnosed with a disease they knew only from the Bible. They ended up demonstrating some swamp-pop dance steps for me in the office of the staff epidemiologist. Stryjewska told me that forming long-term relationships with patients was the only way to treat them effectively. Part of her job is to figure out what habits contribute to poor health — in the case of Vicky Thompson, it was six-hour dance sessions that were hard on her feet.

It’s what one might call a new form of holistic medicine: they teach patients how to take care of wounds, how to look for injuries, how to avoid burning their hands when cooking. It’s an empathy factory, and it bustles. While there I met an octogenarian doing physical therapy to strengthen a numbed leg, a shy teenager from Micronesia who looked like he had nothing more than a bad case of acne, a sturdy middle-aged Latino guy from Los Angeles with a persistent foot sore who reclined on his hospital bed like a Roman emperor. Staff members stopped by to lay hands on his bare shin and chat, or to look at his feet — one of his big toes was swollen to the size of a potato. Ronnie Mathews came by on a sort of improvised walker — he’s disabled himself — and whittled at the toe a little, casually, like a man giving a pedicure with a scalpel. (An advantage of working on leprosy patients is that you can often skip the anesthesia.)

I met Dane Hupp, a physical therapist who told me he sometimes chewed out the patients because “I treat them like my family.” He was worried about a patient who, if he didn’t get over some bad habits, could lose his leg — though, he told me, they lost a lot more legs at the diabetes clinic where he used to work.

Irma Guerra, who runs the outpatient clinics from an office across the parking lot, told me she still thinks about Eddie Bacon. “We learn so much from people like him because they suffer. You can see how beautiful his personality is, what courage it takes to be like that. The people I’ve met I’ll never forget.” Mathews told me he thought about Eddie, too. “I wake up some nights and wonder how he’s doing.”

Captain John Figarola, of the U.S. Public Health Service, is head of rehabilitation at Baton Rouge. He is a tall, earnest New Orleanian with brown eyes and a beige uniform with small metal insignias on the collar tips. He talked to me at one end of a long table while Mathews delicately pared the infected finger of a nervous young man from Latin America. The surgeon was trying to cut away all the dead tissue on the finger before a bone infection further shortened the digit. “My friend,” he said, “I’m afraid if I send you home, the tip of the bone will get reinfected.”

Figarola told me that he loved his job because he and his staff are allowed to give care without measure — they can act on empathy. As Mathews worked, a little crescent of fingertip landed on the table between Figarola and me. “I work in utopia,” he told me, and threw the scrap away with a bit of paper tissue.

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

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