Love in the Time of Leprosy

The life after death of José and Magdalena Ramirez

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."

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