Mant Bares
La maladie que tu nommes pas
You contract a metaphor.
In the very same Book of Leviticus that concerns itself with mixed-fiber fabrics and men lying with men, there are distinct rules in place for the priest who designates a person unclean, who hands the unclean the bell they must swing in warning. Sores and boils, other signs of diseased skin, we now know can mean so many things—but in the time of Leviticus, they meant leprosy.
Now the leper on whom the sore is, his clothes shall be torn and his head bare; and he shall cover his mustache, and cry, “Unclean! Unclean!” He shall be unclean. All the days he has the sore he shall be unclean. He is unclean, and he shall dwell alone; his dwelling shall be outside the camp (Leviticus 13:45-46).
Your aunt with eczema. Your best friend in grade school with psoriasis. Your local grocer with allergies, even. You do not have eczema, psoriasis, or allergies; you have what people in the twentieth century are sent to leprosariums for—well past the age of Leviticus and into that of modern medicine.
And so it is you who is sent away to Carville, Louisiana, to be isolated forever in a community of the similarly afflicted. This leprosarium, the main institution of its kind in the continental U.S. from 1894 to 1999, is called many things: Louisiana Leper Home, U.S. Marine Hospital No. 66, Gillis W. Long Hansen’s Disease Center. But you call it Carville.
Carville is near Baton Rouge, near Louisiana State University. They say this like it’s a boon, being so close to a hive of life. But that’s a different kind of community altogether—one of choice. Carville is a mandatory residence, at your time, for lepers.
I want to give you a name, but to reveal the name your parents gave you is to disrespect the disentanglement you go through over the course of your detention. I want to give you a name like Betty or Kitty or Mary. Many Carville residents choose such playful, common names. But to assign a new identity to you is to disrespect the name you had to give up. The world doesn’t recognize you for taking this new name. Besides, I have no way of knowing whether your birth name is Elizabeth or Katherine or Mary. I could be giving you away. That’s why I’ll call you only you.
I learn for you—all this is for you—about skin afflictions.
Alongside eczema and psoriasis, I find fifth disease. It sounds like part of a list: Here are the important four, but there might be a bonus question on the exam about the fifth disease. It’s also called slapped cheek disease. A simple rash common in children or those with compromised immune systems, it is much more common and contagious than Hansen’s.
Your system is compromised. You are compromised. You have compromised: your life for another, smaller life. Did someone slap you?
I wish it could be that simple.
Leprosy is not, in fact, a skin condition. Hansen’s disease—you will soon learn what you should call it, even if others won’t—affects not only the skin but the nerves, eyes, and nasal mucosa. It’s a chronic disease caused by a bacillum, identified in 1873 by Norwegian physician G. H. Armauer Hansen.
Foucault’s Madness and Civilization begins with a chapter called “Stultifera Navis,” or “Ship of Fools.” In it, he quotes from a ritual of the Church of Vienne, France:
My friend, it pleaseth Our Lord thou shouldst be infected with this malady, and [. . .] he desireth to punish thee for thy iniquities in this world [. . .] If thou hast the patience thou wilt be saved, as was the leper who died before the gate of the rich man and was carried straight to paradise.
Part of why the name leper is unsuitable: The origins of the word leper are Greek, translating to scaly man. You are not a man, or scaly. As a Hansen’s patient, you couldn’t be further from the leper of lore. You look like any teenage girl. You look, maybe, like me. Your case is caught early. You arrive at Carville with all your limbs and features. Whether your nose will survive, your ears, your fingers and toes, your arms and legs, your fundamental sweetness, remains to be seen. But you arrive a mystery. What a treat—a body still pink and fresh, from the world beyond.
Cases of Hansen’s disease in the area that is now New Brunswick were reported as early as 1815. British rule exiled French colonists from what they called Acadie, and many Acadians relocated to Louisiana. There, in the south-central region of the state called Acadiana, they became the Cajuns we know today.
Like they call heart troubles in general la maladie de coeur, we Cajuns call leprosy la maladie que tu nommes pas. The disease—the trouble—you do not name.
Foucault: “Hieratic witnesses of evil, [lepers] are saved by the hand that is not stretched out. The sinner who abandons the leper at his door opens his way to heaven. [. . .] Abandonment is his salvation; his exclusion offers him another form of communion.”
Because I assume you’re a Cajun girl like me, I have already imagined you a family, a set of people who erase you. But you might not have one. If we assume you are alone, then no one can slap you. No one can ignore or destroy your letters or send them back, unopened.
My daughter or my niece or my cousin, my mother or my grandmother or my aunt: I know and I hate that I would burn your letters. I would try to forget you, my dove.
You could be a patient of record. There are memoirs, and even a newspaper called The Star, founded by patient Stanley Stein, to record lives at Carville. But you are not. Or you wouldn’t need me.
For all my assumptions, here’s one thing I know for sure about you: You’re not Native American. Indigenous to the new world, the world where the Bible was imposed like a new identity, they have avoided both the sin and the exclusion of leprosy.
Hansen’s is the least contagious of all identified communicable diseases. Ninety-five percent of the global population is immune. If you put your hand out for help, it wouldn’t hurt me to press coins into your wasted palm.
Announcer in World Series 37, seen on a television by a roomful of residents who haven’t been to a baseball game since they had their birth names: “The umpire is the leper of the game. Everybody despises him, but nobody touches him.”
Your symptoms are not what you’d think. It’s true, at least at first, that you are not scaly. But you are hot and rashy. You scratch until blood rises to the surface and then breaks it. Your extremities go numb, you maybe lose your fingers or toes over an injury your body doesn’t bother to acknowledge for you. Then there are secondary infections, and so on and so forth.
A patient down the hall tells you it’s not so bad to have your nostrils expand and flatten, your hands curl up, your legs give out, your skin bubble like plastic in a fire, your vision wink out. After a while, there can be no—or next to no—pain.
Things were worse when treatment still stemmed from misdiagnosis. When syphilis was treated with mercury, before the advent of penicillin, so was Hansen’s. Still, in the early days of Carville, patients were subject to all sorts of medical experiments and looked, felt, lived no better for it. Sulphur treatments and vitamins, oils, light therapy, all the way down to the pill cocktail that effectively cures you—too late. Let’s say, in the time you are afflicted, the doctors and nurses rig a lighted tent over your body and contort your limbs to achieve the most complete exposure. You are subjected to long periods of light that you can’t see. You look up at the ceiling, at the Daughters of Charity who care for you. The nuns are the only people willing to touch you.
You get better, but not fast enough.
Am I wrong? Do you have a family better than me and mine? Do they write you? I have so much to tell about Carville, and you in it, but the letters escape me. What is there to say? Or is there too much? You feed their words into the fire, and they do yours.
Edmond Landry, one of five siblings who ended their days in Carville, wrote his family in New Iberia, Acadiana—and they him. Any extant letters to his wife, Claire, have long since been destroyed, but the general family letters remain. Edmond lasted eight years, 1924 to 1932, as Gabe Michael. In January 1926, he wrote:
I could say lots more but you all can’t help me so it is useless for me to burden you all with my troubles. I am just trying to adjust myself to this place for it is truly a “lepers” [sic] place. Lots go but lots come back God only knows why. They won’t say but I think I know why.
Outside of his five siblings, none of Edmond’s immediate relatives or descendants ever contracted Hansen’s.
According to Leviticus 12, a new mother is unclean for seven days after giving birth to a male child. She is unclean for two weeks following the birth of a female child. In either case, two doves must be sacrificed to atone for the mother’s sin—the passing of blood—and to make her clean once again.
You have a baby in Carville. The baby, born flawless, takes neither your names nor your husband’s. When the baby is taken away, you haven’t yet held their uncontaminated body in your arms. They are taken by the nun-nurses and absorbed by the state. See, if your family on the outside were to raise your child, they would have to acknowledge you. But how can a dead woman give birth?
Not for one nor two weeks do you mourn your child. That lasts until you go under the pecans. Cleaned out of new life, you have never felt so unclean.
Patients being transported to or from Carville by plane were legally barred from entering the airspace above Arizona. Of all the reasons, in the combined wartimes of Carville’s century, to be afraid of a plane overhead: you.
Hansen’s is only close to contagious when it comes to armadillos, madrilles, particularly the nine-banded variety common in the southern U.S. Their low body temperature, cool like your ears and other first casualties of your flesh, allow the disease in quicker than you can swing a bell. The pathogen’s long incubation period is on the armadillos’ side—they don’t live long enough to suffer.
Armadillo, translated from Spanish: little armored one. A flesh of armor, and still they aren’t safe. What myths must armadillos believe?
When you were an uninfected child, you played in the dirt. You got what vaccines there were at the time, and you fought what diseases remained. You are warm-blooded, but you are the vulnerable five percent. You are a victim twofold: pathogen and luck. You didn’t need to play with an armadillo, to cradle its deceptively strong body or pat its armor, to contract the Hansen’s bacillus. There’s nothing that could have protected you.
I say this not to be cruel, but to prepare you for the years of blame and shame ahead. I know you want to hide as much as you want to limp into the square and warn the town. You want to die outside the gate of the rich man because then at least you are close to the gate. What is suffering without a witness? You want the world to know you didn’t mean it.
But you don’t need to apologize or announce yourself. Not to me, my dove.
“Absconding” is the official term for residents who leave Carville without permission. Permission is hard-won. If you’re able to rake together the money and energy—and not showing visible signs of the disease—you are given a pass to attend classes at LSU, as I did. If your symptoms are visible, or for any number of bureaucratic reasons, you must abscond.
If you are caught absconding, you are sentenced to thirty days of jail time, to be served in Carville. Anyway, you are not allowed to ride public transport ever. Good luck.
But, as Edmond Landry wrote: “Hotel takes anyone’s money and not ones [sic] blood tests [. . .] Thank God for that.”
Foucault:
Suddenly, in a few years in the middle of the eighteenth century, a fear arose—a fear formulated in medical terms but animated, basically, by a moral myth. People were in dread of a mysterious disease that spread, it was said, from the houses of confinement and would soon threaten the cities. They spoke of prison fevers; they evoked the wagons of criminals, men in chains who passed through the cities, leaving disease in their wake; scurvy was thought to cause contagions; it was said that the air, tainted by disease, would corrupt the residential quarters. And the great image of medieval horror reappeared, giving birth, in the metaphors of dread, to a second panic. The house of confinement was no longer only the lazar house at the city’s edge; it was leprosy itself confronting the town (Madness and Civilization).
I imagine you were at Carville before the prisoners came, that you were maybe even there with Edmond Landry. But no matter when you are, these men must reside there with you, their possibility latent in the place, another government entity borne of fear.
You’re not wholly dissimilar from them. Until 1946, no resident of Carville had the right to vote, after all. But these are real prisoners, as some would say. Justified prisoners, if you prefer. Criminals.
Late at night, a government official with some last-ditch face-saving to pull off before morning realized—who else could be forced to share space with the dwindling population of lepers? Using half the buildings of Carville as a penitentiary, the loathsome can have their company.
There’s no telling who is scared more by this arrangement: you or the prisoners. Ultimately, the experiment has no consequences. Not one prisoner contracts Hansen’s. And none of the patients contract felony records.
They leave, either ending their sentence here or continuing it elsewhere, in much more dangerous environs, once the program is suspended. You stay.
When Carville finally closes in 1999, you have a choice: stay or relocate. Where will you go? You have no credit history; your identity has ceased to exist. Your birthdate is forever open-ended. To acknowledge even your erasure is to acknowledge your body, so you could not proceed as the self you know now. Many residents choose to stay as long as they can, having been confined for so many decades that they claim no life elsewhere. But the world has left you all behind. Hansen’s can be caught early enough to completely cure it—for those who can afford that medical care. Before you know it, before I do, before some third-generation at-risk Louisiana woman knows it, there will be a vaccine. Leprosy will remain, but Hansen’s will go the way of smallpox, an outdated disfigurement, for most.
After 1999, Carville becomes a museum. Treatment is moved to the National Hansen’s Disease Program in Baton Rouge. I live there long after you die. No one walking those streets today knows how high the chances are, relatively, of rubbing elbows with those they would call lepers. In the 2010s, men in Louisiana contracted the disease at more than five times the rate women did. Should this comfort me?
Maybe you don’t make it to the closing of Carville. You might have come and gone again, remitted and relapsed, but the end of your days are likely spent in the hands of the Daughters of Charity. In the only home this you, whenever you are, has known.
Foucault:
What doubtless remained longer than leprosy, and would persist when the lazar houses had been empty for years, were the values and images attached to the figure of the leper as well as the meaning of his exclusion, the social importance of that insistent and fearful figure which was not driven off without first being inscribed within a sacred circle (Madness and Civilization).
You’re Louisiana-born and Louisiana-bred(-in-captivity). Of course, Carville has its own Mardi Gras parade. You and I, we know it well. The krewe doubloons, first designed and made in 1921, have Carville’s little-used official name, Gillis W. Long Hansen’s Disease Center, on one side and a sketch of a madrille on the other. Little armored ones raining down with the beads, someone on a trumpet and someone else on the drums, the hallways all movement and celebration.
Yes, still. You catch and throw, laugh and dance until Wednesday dawns, until the priest daubs the ash of repentance on your forehead.
In his 1963 memoir Alone No Longer, Stanley Stein explains that under the pecans is “a Carville euphemism to describe the fate of a patient who has gone the way of all flesh.”
All that’s left after the original name you are exiled from and the name imposed on you by necessity in this anonymous place: the number they give you, prominent on your paperwork and carved on your headstone in the graveyard under the pecan trees.
An old wives’ tale prevalent in our Louisiana: when someone plants a pecan tree, they will die the first year the tree bears fruit.
Pecans rot on the ground, under which rots the patient. Flesh goes the way of all flesh.
You live a metaphor. You die a metaphor.
NO. 3371
1894–1999