‘What Had I Done at 15 to Deserve . . . This?’

It was 1956, the spring of her junior year in high school, and Julia Rivera Elwood had just been elected head cheerleader, the first Mexican American in her Elsa, Texas, high school to hold that position. Then she discovered a quarter-sized, discolored patch on her leg.

Leprosy had been diagnosed in her 78-year-old grandmother two years earlier, so Elwood knew what the patch could mean. The family went for regular checkups to the public health clinic where their skin was examined and tested for areas of numbness, one symptom of Hansen’s disease. Elwood tested the patch herself: no feeling. Still, she did not tell her mother for three months, hoping that it would go away.

A doctor diagnosed Hansen’s disease--leprosy. As the sixth child in a family of 12 children, Elwood was deemed to be a risk to her siblings as well as to her classmates and friends. She was prohibited from returning to school and isolated in one room at home until her transfer to Carville could be arranged.

As she waited, Elwood struggled to find meaning in her illness and was troubled by the verse from Leviticus that equates sin with leprosy: “And the leper in whom the plague is, his clothes shall be rent, and his head bare, and he shall put a covering upon his upper lip, and shall cry, ‘Unclean, unclean.’ ”

“I know that all of us are sinful at one time or another, but my God, what had I done at 15 to deserve something like this?” Elwood said.

She sought solace from her priest, but he was as puzzled as she, telling her that he was not aware that leprosy still existed. “That’s about all he said,” Elwood recalled. “I guess he didn’t know what else to say.”

Elwood had never spent a night away from home. “It was really a tragic moment,” she said, “a crucial time in my life, just before my senior year in high school.”

Doctors assured her that her symptoms had been caught early enough to treat. Improved medicines meant she would not be deformed by the disease.

Still, Elwood was unprepared for what she found at Carville. Many of the longtime patients had been ravaged by leprosy, victims of the years when there was no effective treatment. Their hands and feet were severely crippled by the disease, their facial features altered. Their appearance often terrified the newest patients like Elwood, who feared that they were seeing their own future.

“I saw this lady coming to the infirmary,” Elwood said. “She had mitten hands. Her face was completely paralyzed and her lips were so big that they kind of flapped when she spoke. She was in a wheelchair and when she spoke to me, I couldn’t understand what she was saying. All I could do was to look at her deformities. But later on, you get past that and you see a person’s soul and spirit.”

She finished her high school course work and was allowed a brief visit home to graduate with her class in Texas. Many of her friends wrote to her at Carville, but some people in their small town were still afraid and ostracized her family. The boyfriend of one of her sisters was chided for “running with a bunch of lepers.”

Back in Carville, she married a fellow patient in 1959. Their son, Mark, was born in 1961 and Elwood again felt the stigma of having Hansen’s disease. The medical staff prohibited her from holding her newborn son even for a moment, afraid she would somehow spread the disease to him although there have been no such cases reported.

“I wasn’t even allowed to touch him,” Elwood said, tears welling in her eyes at the memory. “I could see him, but I wasn’t allowed to touch him.” Her mother-in-law cared for the baby until Elwood obtained a release 10 months later.

She and her husband settled briefly in Baton Rouge where Elwood looked for work, filling out job applications truthfully about where she had been for the last six years. Employer after employer turned her down. Elwood then went to an employment agency and asked to speak to the director, explaining her background, training and experience at Carville.

The woman who headed the agency had a son who had been in a tuberculosis sanitarium. “She took a special interest in me and was very understanding of diseases that were misunderstood,” Elwood said. She told the head of the employment agency that she would not go to work “if there is one person who does not want me there.” Elwood got her job under the conditions she demanded and made lifelong friends with many of the people with whom she worked.

Elwood and her husband had two more children and another on the way when their marriage broke up a few years later. She was teaching junior high school in Texas after working her way through college when her former teacher at Carville called and said there was an opening at the school for a teacher bilingual in Spanish and English. The salary was twice what Elwood was making in Texas.

Her job interview was her first visit back in 17 years. She became the first former patient to go on staff in the facility’s 80-year history. “I was elated when I came and so happy,” she said. “We did really well. The kids adjusted and so on.”

But, to many, Elwood had broken a barrier that kept patients and employees apart. There was discomfort on both sides. Elwood’s first few years were rough. “I was surprised that some of the patients were looking for me to fail,” she said. “But I was here to prove something. I wanted the patients to know that a patient can do this.”

After that, Elwood became principal of the school and then head of public affairs for the facility. She married another former patient and they recently celebrated their 25th wedding anniversary. When the facility is turned over to Louisiana, Elwood and her husband plan to retire to Texas.

Elwood has not had any evidence of Hansen’s disease for decades and no longer needs to take medication to control it. But leprosy has shaped her life in ways that were unimaginable when she was diagnosed 41 years ago.

Her hospitalization took place in a vastly different climate from that experienced three decades earlier. The stigma of leprosy had eased considerably, and she never considered masking her identity or hiding her illness.

For a few years after she first left Carville, Elwood said she felt angry and robbed by her forced stay for treatment. “I wanted someone to make up for the six years that had been taken from me,” she said.

But working hard and succeeding in the world have helped take away some of the sting. “I have adjusted,” Elwood said. “I have done well. I have no remorse.”