The Best American Science and Nature Writing 2014 (44 page)

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.
¹⁰

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. 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 naively 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, Stein 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 e-mails 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 whistleblower, Ellsberg said that after he released the Pentagon Papers in 1971, his coworkers 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 more real 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 shoemaking 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.