Love in the Time of Leprosy

The life after death of José and Magdalena Ramirez

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."

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.

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.

john.lomax@houstonpress.com

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