Love in the Time of Leprosy
Everybody thought college would be a breeze for José Ramirez. A starter on his high school football team, he was voted most popular in his senior class of 1966, and he had a pretty girlfriend named Magdalena Santos, who was voted second-most popular in her class. In addition to his athletic and social prowess, he was no slouch in the classroom either. He won a scholarship to Laredo Junior College, as did Magdalena.
Their parents had come up far in the world, but Magdalena and José wanted to go them one better by getting an education and then seeing what they could do from there.
The only worry was that back when he was a tenth grader, José started to get sick. At first it seemed a mere nuisance, if a strange one. Beginning in his sophomore year, odd little lesions that resembled pimples started appearing on his legs and hands. He lost sensation in his forearms and fingers, so much so that he could soon, much to the astonishment of his brothers and sisters, sink a pin deep into his flesh without flinching. As high school progressed, the sores started popping up on his back. A dermatologist diagnosed them as "grease balls" and lanced them free of charge, but the sores returned.
Next, a surgeon diagnosed varicose veins and operated, but that didn't help either. The sores returned, the numbness spread and, soon after, José's upper extremities started to ache fiercely. And then along came frequent high fevers and bouts of congestion. Getting out of bed was an agony.
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By the time José got to Laredo Junior College with Magdalena, he was having real trouble keeping up with the work. Having exhausted all the medical resources in Laredo, José's parents turned to curanderismo — Mexican folk healing. The first healer they visited, in February of 1967, was a plump young woman across the bridge in Nuevo Laredo. She diagnosed José as suffering the physical manifestations of a broken heart, or perhaps a curse from an ex-girlfriend. That's funny, José thought to himself; he didn't feel heartbroken. The breakup the healer referred to happened way back in 1963, when he was 15 years old, and he had all but forgotten the girl. She prescribed that he pray in the nude while she massaged his body to transfer the curse. That cure didn't take.
Next came a yerbero — an herbalist — whose favorite herb was apparently leather, as his treatment consisted of savagely thrashing José's sore-crusted back with his belt. That therapy ended abruptly when José's father, a Laredo cop, pulled out his chrome .38 and declared the proceedings at an end.
After a subsequent unsuccessful visit to a San Antonio dermatologist, the Ramirez family took the advice of a close friend and in December of 1967, they piled into the family's '64 Impala and headed for the north Mexican metropolis of Monterrey, high in the Sierra Madres. There, they would take José to visit one of Mexico's most revered and renowned curanderos. The curandero lived on the outskirts of town in a hut with a palm-frond roof. His yard was a riot of herbs.
After little more than a glance at José's sores, the wizened curandero made his cryptic diagnosis: "This disease is found in the Bible." He refused all payment, said José needed to see a specialist with expertise in diseases of the Bible, and handed over a prescription for prednisone, which instantly made José feel miraculously recovered, if only for a few hours.
By February of 1968, José was in really bad shape. He could no longer get out of bed, much less go to school, and he had lost faith in all doctors. His sister Raquel at last persuaded him to give medicine one last chance, and José agreed to be admitted to Laredo's Mercy Hospital. There, at last, after sending a biopsy to the Centers for Disease Control in Atlanta, a team of doctors figured out what was wrong with José Ramirez. A doctor came all the way down from Austin to break the earth-shattering news: José had leprosy.
The first thing José felt was relief; at least he knew what was wrong. While José was still processing the diagnosis, the Austin doctor added that, like 90 percent of all newly diagnosed Texan leprosy patients, for the time being, his new home would be Carville, which José first misheard as Kerrville. He knew that town — he had once competed there on the gridiron. No, the doctor explained, Carville was in Louisiana, and it was a special place for people with leprosy. He assured José that he would probably be back in Laredo in six months and that he would probably be able to continue his education in Louisiana.
But how would José get there? He was in bad shape; there was no way he could sit up for the entire 750-mile, pre-Interstate drive to Louisiana. He needed to go in an ambulance. Back then, funeral directors also operated ambulance services. The undertaker said he couldn't spare an ambulance.
"Ambulances are for the living," he explained. As for José, he could go in a hearse.
From the outside looking in, the United States Marine Hospital #66 (the Carville Leprosarium's official name) is a spooky place. It stands on the River Road that winds its way from Baton Rouge to New Orleans in the Louisiana of Old South myth and voodoo legend. A high levee blocks the Mississippi River from view, and the endless sugar cane fields are interrupted only by clusters of shotgun shacks and the occasional antebellum plantation, its grounds shaded by Spanish moss-shrouded live oaks.
The hospital itself was once a sugar plantation known as Indian Camp, which was situated near the town of Carville, the ancestral and boyhood home of former Bill Clinton adviser/current CNN pundit James Carville. As with Angola Prison, the site was selected in part due to its inaccessibility by land — ringed by the river and alligator-infested swamps, Carville was easy to access by barge but hard to escape by land.
Unlike at Angola Prison, staff at Carville did their best to make the hospital a place of good cheer. As José discovered in his first few weeks in the hospital, amenities abounded on the 350-acre grounds. In addition to dorms, schools, a post office and Roman Catholic and Protestant chapels, there were two golf courses, a movie theater, a gym, a softball field, a man-made lake and a canteen that even stocked beer.
José's first few weeks at Carville were spent in the infirmary. While being stabilized, pumped full of bacilli-killing antibiotics and pain-relieving steroids (one of which was the very same prednisone prescribed by the curandero), he voraciously studied the history of Carville and the actual facts about his ailment (see "Leprosy Lives On").
He learned that leprosy is one of the oldest recorded diseases known to man, and that stigma against it is enshrined in virtually all the world's societies and religions. He learned that it is caused by a bacillus found in dirt, and that the only other animal that carries the disease is the nine-banded armadillo (see "The Critter Connection").
He also learned that much of what the world "knew" about leprosy was incorrect. It was neither sexually transmitted nor highly contagious — 19 of 20 people worldwide are naturally immune. It didn't cause people's fingers, noses or limbs to rot and fall off. It did attack bones and joints and cartilage. Leprosy sufferers who appeared to have lost fingers had merely lost the ability to uncoil them, giving their hands a club-like appearance, and others whom the disease had thoroughly ravaged had to have limbs amputated. The bacillus also clustered in cool places in the human body, like the nose, where eventually it destroyed the cartilage and caused the nose to collapse. Left unchecked, leprosy killed in one of two ways — it could shut down the larynx and cause suffocation, or it could travel up through the nasal passages and infect the brain.
Most societies quarantined leprosy sufferers, and the United States was no exception. Carville had opened in 1894 when the "Pest House" in New Orleans grew too overcrowded, and in 1921 it became the official U.S. home for people with leprosy. When an early effort to staff the hospital with volunteer civilians failed, the nuns of the Daughters of Charity of St. Vincent De Paul stepped into the breach and had been there ever since. Unlike the rest of the South and the United States at large, the outcasts at Carville were integrated, brothers and sisters bonded by their stigma.
José learned that compared to patients from earlier decades, he was lucky. Until 1946, Carville patients were stripped of the right to vote. Women who arrived pregnant had their babies declared stillborn and sent off to adoption. Many others changed their names and cut ties to their families on the outside to hide the shame of the disease, and, to this day, the Carville graveyard is full of stones bearing pseudonyms.
When he was admitted, José was asked if he wanted to change his name. He declined. In fact, his father took out an ad in the Laredo paper publicizing his son's address in Carville and encouraging friends and family to send letters. Within weeks, José received more than 100 letters from people back home.
That bold act set a pattern for José's stay. He would not go gentle into the good half-night of the living dead, would never accept Carville as his home, nor leprosy as his fate.
In due time, the antibiotics did their work, and a partially recovered José clambered out of bed, first into a wheelchair and then onto his own two feet. He started getting to know his fellow patients — or "brothers and sisters." They came from virtually every state and territory under United States dominion, from Guam to Maine, several countries around the world, and every race — many of them, like José, Spanish-speaking or bilingual Texans. (Eventually José would help teach some of them English.)
He learned their stories. "Most of the time they would talk, but they would do it as if they were talking about another person, not about themselves. I wanted to find more about the residents, about the lives they had lived and how long they had been there. I found out that there were some who had been there 50 years and had not even gone over to the levee to see the ships go by."
Other patients advised José to give up on his dream of marrying Magdalena. They would see her and tell him it wasn't going to be long until she was gone. He should make a new life in Carville and find a woman from there to marry.
But José broke part of the pattern — he believed people could come and go from Carville without leaving their lives forever.
It wasn't easy, to say the least, and there were times when José almost gave up, not just on a life with Magdalena, but on life, period. Early in his stay, thoughts of the life he had left behind, with all its loose ends and obligations he couldn't meet, sent him spiraling into the abyss. His depression reached its peak when his father lost his job and Magdalena's mother was most vehemently opposed to their marriage.
José had a plan to commit suicide, but the other residents saw that, and pulled him through.
Over the years, Carville residents had developed ways of coping — some healthier than others. Romances blossomed among the patients, some of whom shared cottages in a purpose-built married housing section. Surrogate families formed — siblings and parents and children adopted each other.
José himself was "adopted" by Mary Ruth and Darryl Broussard. In her old life, Mary Ruth had been a Mexican-American beauty from San Antonio, while Broussard, a Cajun from Lafayette, had once dreamed of playing football for LSU and becoming governor of Louisiana. The Broussards fed José and treated him as their own, and helped him walk the straight and narrow as much as possible.
Which was hard. In some ways, Carville had less in common with a hospital than with a small town, and as in all small towns, boredom can breed mischief. Some residents succumbed to chronic drug and alcohol abuse; others indulged moderately, and their capers helped José cope.
One night a group of male patients who called themselves the Super 23s (their name came from their dorm number) introduced José to the seamy underbelly of mellow Carville vice. They took him through a hole that had been dug under a 12-foot cyclone fence around the hospital's perimeter. Patients would use it to go to town or down the road to go drinking or look for a woman.
Or to a place that was all their own, a ramshackle vision straight out of the pages of Mark Twain. Down on the banks of the mile-wide Mississippi, Carville inmates had built a rainbow-colored, driftwood shack they called "the Ponderosa." Outside, there was a vegetable garden, within which a more exotic crop was concealed: weed. Despite the fact that possession of a single joint could then draw a long sentence in Angola, the local parish sheriff looked the other way. (Eventually the state police took over the beat and strongly encouraged the patients to "stop growing exotic vegetables," so the Ponderosa's glory days came to an end.)
José also learned to harness his sense of justice. When admitted, he was the youngest patient in Carville, and despite his law-abiding, blue-collar background, some of his actions were in concert with the 1960s youth movement. He wasn't a supporter of "longhair" hippies, but he did share their passion for fighting injustices.
While kids at Columbia and countless other colleges were taking over administration buildings and publishing lists of demands, José was violating the prohibition against patients swimming in the staff-only swimming pool. (There was no risk of contagion — the pool was segregated merely because of taboo, which existed even at Carville, where the disease was understood best.) While he escaped notice for that episode, other incidences of his rule-breaking had more dramatic consequences.
Parishioners at Carville's Catholic chapel were segregated — staff sat on one side, patients on the other. Staff got communion from one chalice, the patients from another. José felt this violated the spirit of the sacred phrase. "Holy Communion translates to 'united community.' It was not a united community except in words. It was not in actual practice."
So José decided to change that. One Sunday he sat on the other side. As people elbowed him and told him he was in the wrong place, José went to the altar and kneeled before the priest. He got communion out of the staff chalice and felt it was a victory.
Or so he thought. His mother was too tradition-bound to be pleased by her son's defiance of church rules. And many of the people in Carville felt much the same way. For months, the staff and many of the residents wouldn't speak to him because he had broken the status quo. He no longer saw it as a victory.
While José's academic career stalled for a time, Magdalena graduated from Laredo Junior College and enrolled at Texas Woman's University in Denton. José would raid his piggy bank to bring her to Carville on breaks. There, they would walk the grounds, shoot pool, fly kites and make future plans. These always centered around José getting back into school, but Louisiana State University had never admitted a Carville inpatient (or staff member) before. That didn't stop José.
LSU kept saying no, but finally a social worker affiliated with LSU looked into it further. Because he was considered disabled, the State of Texas agreed to pay his tuition if LSU would admit him. Carville's director interceded with LSU's president to end the strict policy against Carville patients and staff. At long last, the president became convinced that there was no longer a threat of contagion. LSU allowed José to attend and accepted all his hours from Laredo Junior College.
Magdalena was well on her way to becoming a social worker, and José chose to major in sociology at LSU. By this time he was getting experimental medications, one of which was called Clofazimine, or B-663. It was a brown pill that could turn a complexion black.
The drug focuses on the cool parts of the body where the leprosy bacilli thrive. José's entire body was ravaged by the bacilli, so he needed a larger dose. His complexion turned black. He was a black man attending LSU at the time when it was a sea of white faces, and one of his classmates was a Grand Dragon of the KKK. (The Grand Dragon was none other than former Louisiana state representative and failed presidential candidate David Duke.)
There was a soapbox in the LSU student union on which students could freely speak their minds about anything they wanted for five minutes at a time. The Grand Dragon made frequent use of the soapbox and the Bible to denigrate blacks and lepers. And here was José — a (temporary) black man, born of Mexican heritage, a devout Catholic and a sufferer of leprosy. In short, every Klansman's perfect target. José didn't take Duke's taunts lying down, but he didn't exactly best him in debate, either. He could fight with his fists and shout four-letter words, but he didn't yet know how to articulate his thoughts.
But if José couldn't tell a man like Duke what he was capable of, he could show him. He decided to run for president of the sociology club to prove that he did have the intelligence to do something other than manual labor. He won.
By then, despite his ongoing treatment and frequent drug reactions, José was allowed out of Carville more and more frequently. And he had lots of work to do on the outside: namely, get Magdalena to the altar. First, he had to win over Magdalena's mother. Years before, when word of José's diagnosis got back to her, she had phoned her brother, a doctor in Monterrey, who had told her that José would probably die soon, after infecting Magdalena. Years later, José found out this doctor was an ophthalmologist. Yet Magdalena's mother had made her position clear — marrying José meant saying goodbye to her family.
José wrote her a long letter detailing his prognosis and ongoing treatment and spelling out the long odds against his ever infecting her daughter, no matter what her eye doctor brother said. She never wrote back, but she did later write Magdalena, grudgingly allowing that she understood better.
And on Christmas Eve 1972, José and Magdalena exchanged their vows in a Laredo church. To José, this was nothing less than a resurrection. He was finally back among the fully living.
Eight years after he was driven by hearse through the gates of Carville, José Ramirez walked out of the land "of the living dead," officially discharged.
He and Magdalena moved to Houston in 1976. Since then, José has worked for the Mental Health and Mental Retardation Authority of Harris County, while Magdalena has put in a long stretch at the Veterans Administration. They live in Braes Heights. Carville officially closed in 1999, and the old hospital now houses the National Hansen's Disease Museum. (Today, leprosy's official name is Hansen's disease, in honor of the Norwegian scientist who first discovered the leprosy bacterium.) José makes frequent trips back. Fifteen residents still live there, older people who were allowed to stay because they had nowhere else to go when the hospital closed. They still call José "son" when he comes to visit.
Today, José is a world-renowned advocate for people with leprosy specifically and a recognized expert on the concept of stigma in general. He has won humanitarian awards in several countries and at the United Nations, serves as the managing editor of The Star (a journal focusing on leprosy studies) and travels the world making presentations. "I tell people that I charge a huge fee. They ask what it is, and I tell them that in the next month they must educate ten people, be it their family or their friends, strangers, whatever, and tell them the truth about leprosy and the L-word and how stigmatizing that is."
On the subject of stigma, few are better qualified by experience. "My identity was challenged constantly," he says, remembering all the many and varied taunts he has endured. "Looking back, I realized that out of all of those labels, the one that caused me the most pain was the L-word. That's because you are a nonperson.
"When you spell it in reverse it's 'repel,'" he points out. "It's a stigma, label, a tattoo that doesn't go away. With HIV and AIDS there was a great deal of stigma, to the point where people who were diagnosed with HIV would say, 'I am being treated like a leper.'"
As Magdalena puts it, José's father did a wonderful thing when he acknowledged his son's worth as a human being at the same time he confirmed his illness and that José was living in Carville.
"It was the best thing they could have done," says Magdalena. "They said, 'This is for the world to know. We are not gonna keep this hidden.'"
Earlier this year, José published his memoir, Squint: My Journey with Leprosy. Since then, José has seen his profile rise dramatically. There was a lengthy interview on NPR and numerous positive reviews. Rita Wilson, a Hollywood producer and the wife of Tom Hanks, is said to be considering a possible film and/or HBO series treatment, and other filmmakers are also intrigued — some by José's story on its own, and others by the window he opened into the world of Carville and leprosy in America. That's all great, José says, so long as people get his message. "It's wonderful that my book was published, but I never intended it to be a book," he says. "I intended it to be a manuscript for me and my family. It's great that there is a possibility of a movie, but we never looked at it in that fashion. I just wanted to fight the stigma of leprosy and the other labels."
In July, he held an official Houston book signing at, of all places, his old-fashioned Braes Heights strip-mall barbershop, for no other reason than that he liked his longtime barber. The event was packed with friends and well-wishers, who grazed on finger sandwiches and Spanish tortillas prepared by José and Magdalena's daughter Erika, who was fresh back from a stint as an English teacher in Spain. Their son J.R. manned the book table and took cash for copies of Squint. There was free beer and wine, and a cheery mood pervaded — it could have been a party celebrating a win in a local election rather than one man's triumph over a dread disease.
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