by Tim Gilmore, 3/15/2019
“Will Bill of Jacksonville” had come back home, but outside a small circle of family and friends, he kept his diagnosis a secret. Not only did the disease frighten people, but in this Bible Belt town, it resonated as the plague of the Old Testament.
“And the leper in whom the plague is,” admonishes Leviticus 13:45, “his clothes shall be rent, and his head bare, and he shall put a covering upon his upper lip, and shall cry, Unclean, Unclean!”
The leper is the archetypal pariah. Though nearly everyone carries a natural immunity to the illness, few diseases carry more stigma and create more fear. At the end of the 20th century, physicians and activists sometimes compared the terror-laden mythos surrounding AIDS with that of leprosy.
For 17 years, Billy Burton suffered without knowing what blistered and ate at his fingers and toes. His hands ulcered and cankered and refused to do what he instructed. Between 1935 and 1952, doctors amputated several fingers and one leg.
When Billy was just 15 years old, in 1938, doctors thought he might have polio, later, in 1946, a nebulous nerve disorder. The Jacksonville doctor who diagnosed his leprosy, or Hansen’s Disease, in 1952, by which time Billy had extensive nerve and “limb damage,” had spent time working at the National Hansen’s Disease Center in Carville, Louisiana, to which he referred Billy Burton immediately.
At least Billy felt the satisfaction of knowing what was wrong, and though he’d missed most, already, of what treatment might have been possible, at least the means of dealing with such wrongness existed.
Such enlightenment, however, wasn’t universal, and the Jacksonville Board of Health moved to quarantine his mother’s home on Rural Route 5 in the small western Duval County community of Hart Haven.
2. The Choice of Two Stories
Marcia Gaudet had heard about Billy Burton. He was something of a legend in the Hansen’s community, not to say “leper colony,” and Julia Elwood, who’d spent four decades at the Carville center, first as a patient, Mardi Gras queen in 1957, later as medical attendant and public relations director, had told her about him. Julia had come to Carville when she was 15 years old. In a 1999 Discovery Channel documentary called Banished: Living with Leprosy, she said, “I kept praying and crying. I thought I was coming to Carville to die.” Billy, Julia told Marcia, was “a character.”
She told Gaudet, “He’s got what we call ‘mitten hands.’ All of his bones have absorbed. He has a thumb on both of them.” In her 2004 book Carville: Remembering Leprosy in America, Gaudet recounts how Billy dealt publicly with his disease.
Billy told multiple stories to let people decide what they wanted to believe and to buy himself some legitimacy in their presence. In Jacksonville, in Louisiana, he’d head out to the bars, drink beer and play pool.
Inevitably, Billy said, men wondered out loud what was wrong with his goddamn hands. “I’m going to tell y’all two stories,” he’d say, “and ya’ll choose which one to believe.”
First he’d tell them, “I was in Korea—in the battle zone—I went up the hill and there was bombs all over the place.” Then, “Me and my buddies were in this jungle and this bomb exploded, and both of my hands were mutilated—and they had to operate.”
His audience stood enthralled about the pool table, half-circled around the bar, listening with rapt attention. Dramatically, he’d let the pause linger, then finally break the silence and say, “The other story is I have leprosy.”
The short sentence broke over the crowd with the release of great buildup, an anticlimax, and everyone laughed with weird and guilty relief. “Everybody thinks I was in the war,” Billy told Marcia Gaudet. “I give them the choice.”
3. Saving Home
For most of the 20th century, the former slave plantation at Carville was the only hospital in the country treating Hansen’s Disease. It opened as the Louisiana Leper Home in 1894. From 1921 to the late ’50s, almost every patient diagnosed with Hansen’s in the United States was legally quarantined at Carville.
The “Sisters of Charity” of the “Daughters of Charity of St. Vincent dePaul,” the same order of nuns, founded in France in 1633, who founded St. Vincent’s Hospital back in Billy’s hometown, cared for patients at Carville. Sometimes called “flying nuns” or “butterfly nuns” for their distinctive winged headgear called a “cornette,” the sisters were icons for charity for the sick until late in the 20th century.
President Bill Clinton’s chief political consultant, “the Ragin’ Cajun,” James Carville, grew up just a mile from the “leprosarium” and former sugar plantation named for his grandfather, the postmaster who first delivered patients by way of New Orleans. To preclude paranoia, the first patients arrived in secret in the middle of the night, officially an order of ostriches.
When the Board of Health, back where “Wild Bill of Jacksonville” first contracted Hansen’s, threatened his mother’s home in Hart Haven, officials at Carville interceded.
Dispelling myths about the disease’s supposed high contagion, or the scourge as punishment from an angry God, Carville kept Burton’s mother from losing her home. Billy had lived with his mother and the illness, even as he’d worked 10 hour days. His sister Opal had married. His father had passed away.
Just as “passing away” became a latter-20th century euphemism for death, the old “rural routes” became city roads, even when crossing the county outside the city. Billy the Leper became “Wild Bill” and went to work laying down highways.
4. Leper Rebels Built Our Roads
In 1957, after five years of aggressive drug treatments, Billy came home. He was “cured.” But the Board of Health watched him like the East German Stasi. At first.
In early 1983, Billy told Steve Rothman of The Palm Beach Post exactly what the newspaper turned into its headline: “The Stigma Lingers Despite a Cure.” Much like 1980s AIDS patients, he recalled, “I was told I couldn’t go into any public place, use any public transportation, and if I rode in a car, I had to keep the windows rolled up to protect the public from exposure.”
But the watchful eye grew sleepy. The poor who called Hart Haven home were easy to lose sight of. And Wild Bill had to work. Though he never started a family, Billy had to feed himself and his mother. He sympathized with his sister Opal, mourned with her widowhood, but never imagined he himself might marry.
He worked in construction. As he did those years he was sick but undiagnosed. It was loss of feeling in extremities that created injuries that led to infection that led to amputation. The common belief that digits just dropped off was another misconception.
Even when he’d first come to Carville in 1952, Billy often broke free, escaping, as he told Gaudet, “through a hole in the fence.” If Billy was a leper, he was also a rebel, or the other way around. He’d break free of his jail, go listen to loud music, drink copious amounts of beer, and tell stories.
When Billy left Carville for Jacksonville five years later, he’d determined to work with his hands, such as they were, as he had before he knew what was wrong with them. So he helped build Interstate-10 through Florida and Louisiana and I-95 through Jacksonville. Working with his hands, he eroded them into the highways.
Billy managed to live life on his own terms, working 10 hour days, downing his favorite cheap beer, never complaining. The phrase “working your fingers to the bone” had never been more literal, not that Hansen’s stopped at the bone. When the bone was gone, Billy’s resolve remained, doubled down, restrengthened.
“I drifted into the background,” Billy told Rothman, “and soon health experts forgot I even existed.” That dodge worked until sometime in 1976 when Billy saw a doctor for an abscess in his ear and that doctor looked at the war-ravaged landscape Billy had, for years, told wild-eyed onlookers was his hands.
5. King and Queen and the Telling of the Telling of the Stories
When Marcia Gaudet met Billy just before he died in 1986, he told her the story of his telling two stories. Clearly he’d perfected the choice as he’d practiced it in bar after bar for years.
“I had my cigarettes in my hand and my drink on the table,” Billy said, “and five sailors walked in, and two sat on one side and three on the other. And one of them was a chief petty officer, an old-timer in the Navy.”
Registering the weight of the moment, which required, at the same time, dismissing its gravitas, Billy said, “So I, ah, lit my cigarette, had my drink, you know. So, they watched me, saw how I smoked my cigarette, held my drink with two hands.”
He’d repeated this inventory of observation, evolving it incrementally, for years. “And one of them asked me, said, ‘How you hurt your hands?’ So I said, ‘Oh, you wouldn’t believe it if I told you.’”
The stories had gained specificity. “I was in the Fifth Infantry, 405th Division.” By then, he’d learned, “They didn’t know the difference. I didn’t know the difference.” Specificity mattered more than accuracy.
“We were supposed to take that hill at 0548. I had four of my buddies with me. We was going up the hill. We hit a foxhole, and they started opening up on us. I saw a Korean throw a grenade, and I reached up and grabbed hold of it. And I was going to throw it back.”
His story intensified, further specified, with a sniper shooting Billy in the leg as he collapsed downhill to a woods-shrouded first-aid station, Billy crawling, his leg ruptured, through a depression in the earth filled with land mines, losing his hearing from explosions, then by some miracle, some universally undeserved grace of God, being shipped back home, then tended as salvage operation.
“Now that’s the lie,” Billy said. “The true story is I got leprosy.”
Following a stunned inebriated delay, his interlocutors clapped their hands, bent double, raise their brows, pointed at Billy, laughed, saluted him as a martyr who’d lost himself, piece by piece, since “Freedom isn’t free,” for American freedom.
Billy told Marcia Gaudet he’d first told this story when working for the Civil Service and the Navy in Jacksonville shortly after his first release from Carville in 1957. He’d embellished the story not just for patriotic drunks in bars but construction companies for whom he’d worked his hands to pieces.
“Until his death in 1986,” Gaudet writes, “Billy performed this personal- experience-tall-tale regularly,” saying, “whenever he gave people a choice, they never ‘chose’ to believe the leprosy.”
Gaudet says, “Billy was an accomplished storyteller, telling a story about telling a story.” He rarely mentioned having fooled an old man with this story on first traveling by bus to Carville from Jacksonville. It’s duping the barroom machismo that advanced his narrative. Billy manipulated tall-tale expectations with the very particular horror-humor meta-language of “leprosy,” the ancient archetypal illness of revulsion.
Gaudet references Susan Sontag’s point, in her 1978 Illness as Metaphor, that sufferers find no advantage from “hearing their disease’s name constantly being dropped as the epitome of evil.” Since “leper” equates to “outcast,” but Billy commanded an audience, his fellow drinkers couldn’t believe he had leprosy and could only see leprosy as metaphor.
Billy told Marcia Gaudet the beer “didn’t cost me a penny the rest of the night.”
He also shared his memories of Mardis Gras at Carville in the 1950s, which Gaudet published in the Winter 1998 issue of The Journal of American Folklore. It was better 30 years back, he said just before he died in 1986, even for the children and teens, confined here down in moonlight above the waters, Mardis Gras at the leprosarium.
“It was a real community,” Billy reminisced. “The patients would vote on the king and queen, kept secret, and it was presented the night of the ball.”
He’d first been misdiagnosed at age 15. Julia Elwood, who changed her name to Juliette Rivers at Carville, originally Julia Rivera, a Mexican-American girl from Texas, was first admitted to Carville when she was 15. Once teenage kids got over the horror of being committed to a leprosarium, assuming they did, they often found Carville the most wondrous and romantic bubble in all possible worlds. Quite often a leprosarium came to seem the most apt metaphor for their stance against the world. They felt understood here, rightful misfits, apart from the larger world of fools, the very quintessence of transition from childhood to adulthood.
6. Wild Bill from Jacksonville’s Personal Invitation
Though the Board of Health had threatened to watch him like a hawk, Billy told Steve Rothman of The Palm Beach Post in 1983, “I drifted into the background and soon health experts forgot I even existed.” In July 1984, Billy described for The Tampa Tribune’s Marilyn Kalfus how his Jacksonville friends had known of his disease and accepted him. “I went to their homes and played with their children,” he said.
He never married because, as he explained, his disease would interfere with supporting a family. Billy counted himself a true gentleman, while marrying and having children would have been selfish. “I have old-fashioned morals,” he told Kalfus.
Sometime in 1976, Billy had seen a doctor about an abscess in his ear. The doctor looked at Billy’s hands, just like all those drunks in all those bars all those years.
“What’s wrong with them?” he asked.
“You don’t want to know,” Billy said.
He’d played the game a thousand times, but now, the jig was up.
The doctor asked his patient for a diagnosis. Insistently. Billy refused him the choice of a war story. He skipped straight to the punchline: “I have leprosy.”
It wasn’t the first time Billy saw a physician fly into a rage. He told Billy he’d a responsibility, but had no right. Into his own hands, if you could call them that, the patient had no right to take this doctor’s life.
Billy needed bed-rest for his abscess, but found no room to lay his head. Jacksonville wasn’t big enough a city. So he left again for the microcosm of Carville.
In July 1981, Billy Burton wrote The Atlanta Constitution to say how much he appreciated the newspaper’s May 3rd story by Martha Simmons, “Life in the Leprosarium.” Her story, he said, was both informative and amusing.
“Amusing, you say?” he wrote. “Yes, for you will find that we victims of HD have a special sense of humor. Humor that a well or even a sensitive or intellectual, normal person might find crude, offensive, or even gross. Such as me beating my nubs on the bar to the rhythm of the music. Amusing to see the stares of other patrons at how I handle a knife or fork with no fingers on either hand. The look of disbelief when I tell people my occupation was a truck driver, bulldozer operator, front-end loader, or an asphalt roller on a road-building job.”
It didn’t matter, he said, if you called him a leper. To some sufferers of Hansen’s Disease, it mattered, and he respected the difference in connotation. The word “leprosy,” he said, was too “biblical” for many people afflicted with Hansen’s.
Before signing off “Wild Bill from Jacksonville,” he issued all readers an invitation. Living with his disease had made him love life more than he otherwise could have done. He assured his readers he lived life to its fullest every day. He took not one minute for granted.
And so, he said, “In closing, let me give your readers, each and every one, a personal invitation to come and visit Carville. I assure you that when you leave, your outlook and perspective on life will be different.”