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'We Have Suffered Too Long in Loneliness and in Fear'

Betty Martin, 89, entered Carville under that assumed name as a 19-year-old debutante. Even today, after two best-sellers, she fears to divulge her true identity.

December 14, 1997|SALLY SQUIRES | WASHINGTON POST

She was a 19-year-old debutante in New Orleans, engaged to a handsome medical student and about to celebrate Christmas with her large family when she learned in 1928 that the pale rose spots on her thighs were caused by leprosy. The doctor who gave the news to her mother shouted, "Get her out of here before she infects the entire city!"

No one ever determined how she developed the disease. No other members of her family or friends ever did.

The shame and disgrace of her diagnosis led to a furtive departure on a sunny day in January. Only her fiance and a few members of her family knew she had leprosy and was being sent to Carville.

To the rest of the world, including her sisters and brother, her sudden disappearance was explained as an extended trip to an out-of-state relative. Her parents even arranged a special mail drop that would support their story.

At Carville, the debutante so feared bringing shame upon her family that she gave an assumed name upon admission. Even today, at 89, she will not reveal her real name.

She is frail, with hands so slight that they feel as if they could break with a gentle squeeze. She is often confined to a wheelchair and talks haltingly, but smiles a lot. She lives in one room at the infirmary in Carville, but there are vestiges of her old life: An attendant regularly fixes her hair, does her nails and helps her dress.

When she first arrived at Carville, the medical student remained faithful. But the time apart took its toll, and he broke their engagement on her 21st birthday. She found love anyway with a fellow patient named Harry Martin.

"I believe that faith can heal," she wrote in her book "No One Must Ever Know."

"I believe that love can help beyond all understanding and that through lack of it we perish. Harry and I were blessed with both love and faith."

Marriage between patients was not permitted then, but after years of "keeping company with each other," the couple escaped through a hole in the fence. Their fathers waited in a darkened car on the road outside the facility and whisked them home to New Orleans. They married soon after, set up a home and tried to resume normal lives. Only a few close family members and friends knew their secret. They prayed that their disease would not continue to progress and give them away.

But when Harry developed skin lesions on his ears and legs in 1939, the couple was forced to return to Carville. They had enjoyed 5 1/2 years of freedom. More than 100 patients had died since their escape, most of them victims not of leprosy but of malaria in this swampy part of Louisiana.

The Martins were warmly welcomed back to the center. But after being tested and examined, they both faced the consequences of their unapproved departure: Harry spent the next month in the facility's small jail; Betty Martin got 30 days of detention in a barred room in a small cottage that housed the mentally ill patients. Their punishment over, they were forbidden to live together.

The couple's disease continued to progress. Harry developed pneumonia and nearly died. Then researchers stumbled upon sulfones, a new class of drugs. Harry and Betty Martin were among the first few patients to try Promin, which proved to be the first medication to thwart Hansen's disease.

Twenty years after entering Carville, they were discharged. Betty Martin wrote about her experiences in a book called "Miracle at Carville." It made the bestseller list in 1950 and was condensed by Reader's Digest and published in more languages than Martin knew existed. People wrote to her from all over the world. Many urged her to come out of hiding and talk publicly about her disease, using her real name.

"We cannot [come forward]," Martin wrote in a second volume called "No One Must Ever Know."

"We have suffered too long in loneliness and in fear. The truth is that our fear of the stigma has grown instead of lessened because we now have more to lose if we are exposed."

The Martins lived for nearly 40 years in the outside world, and for all that time, they guarded their secret. Under their real birth names, they had bought a small home in California. Harry had found a job as a salesman. Both had returned to Carville for brief treatment, Harry to have surgery done to straighten his crippled fingers, Betty when the Hansen's disease became active again.

But in 1989, they returned to Carville permanently. Federal law guarantees free treatment for all sufferers of Hansen's disease, and they still had friends there. Aged and in failing health, they moved to a double room in the infirmary in 1994. Harry Martin died in September 1996.

Betty Martin has outlived many of those she once feared would find out about her illness.

She does not know what she will do if she has to leave the center.

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