Love in the Time of Leprosy

The life after death of José and Magdalena Ramirez

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.)

José Ramirez, suffering here from pains and sores, and Magdalena Santos were high school sweethearts.
Courtesy of José Ramirez
José Ramirez, suffering here from pains and sores, and Magdalena Santos were high school sweethearts.
After doctors finally figured out José had leprosy, he was sent to Carville in Louisiana. Told he'd probably spend six months there, José ultimately stayed in Carville eight years.
Gleason Photography
After doctors finally figured out José had leprosy, he was sent to Carville in Louisiana. Told he'd probably spend six months there, José ultimately stayed in Carville eight years.

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.'"

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