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Sunday, March 30, 2003



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ASSOCIATED PRESS
Richard Marks, Kalaupapa sheriff, unofficial ambassador for the former leprosy colony and a survivor of Hansen's disease, takes in the ocean view.




Kalaupapa’s vanishing faces

Only 40 elderly residents remain
at what once was a bustling
community of leprosy patients

Q&A
'St Damien sounds good


By Jaymes Song
Associated Press

KALAUPAPA, Hawaii >> Between the tears and memories of hundreds of funerals, Paul Harada finds some comfort in the feeling that his dead friends and neighbors are now free.

"In fact, I think these are the lucky ones -- they're not going to suffer any more," he said.

Stricken with leprosy as a teenager, Harada was torn from his family and banished to this isolated peninsula on Molokai to die. Today, Harada, 76, is one of the last 40 elderly patients of Kalaupapa, where thousands from the Hawaiian islands were quarantined over the last century.

Harada has had the option for decades of leaving this place of exile. Yet, he chooses to stay.

"I'm all crippled. What am I going to do outside?" said Harada, raising his nearly fingerless hands to his aged, tanned face. "How am I going to live?"

Kalaupapa was once a lively community with a population of more than 1,000. Now graves outnumber patients nearly 200 to 1.

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ASSOCIATED PRESS
Tourists walk through a cemetery past the grave of Father Damien, left, in the Kalawao section of Kalaupapa. The priest ministered to exiled leprosy patients upon his arrival in 1873.




After being diagnosed with leprosy or Hansen's disease, Harada was forced from his home on Kauai to Honolulu before being shipped to Kalaupapa on June 29, 1945.

"I kind of accepted the fact that I'm going to come here and die here," he said.

The population at Kalaupapa was more than 400 when Harada arrived, but has steadily dwindled, along with the number of funerals.

"When I first came over here, the church bell was tolling every day, every day for weeks," he said.

Harada lives with his wife of 48 years, who was also a leprosy patient, and spends his days tending his lush yard filled with tropical flowers, vegetables and fruits such as bananas, mountain apples, avocados and papayas.

The residents are still called "patients" by each other and the state, although they have all been cleared of the dreaded and disfiguring disease once thought to be a curse.

They live in this tiny ghost-town-like neighborhood with a few dozen rural single-story homes and buildings.

There are no schools, no children, no movie theaters, no sunbathers at the beach, no restaurants or supermarkets. There is no traffic signal for the narrow road that winds through the settlement to the airport that resembles a barn.

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ASSOCIATED PRESS
Photos of leprosy patients serve as reminders of Kalaupapa's past.




The Kalaupapa peninsula is surrounded on three sides by the white-capped waves of the Pacific, with the rugged green cliffs of Molokai as the backdrop. It is accessible only by small planes, boat or mules that carry tourists down a steep cliff trail.

Kalaupapa was named a National Historical Park in 1980. After the last patient dies or moves away, the peninsula will be administered by the National Park Service.

Meanwhile, the patients, whose average age is 75, lead leisurely lives fishing, gardening, reading, watching television.

"It's really no different than living in any small town," said Michael McCarten, the state Health Department administrator for the settlement, who lives in Kalaupapa four days a week.

Some patients sip afternoon beers at Elaine's Place, a patio of a house turned into a makeshift bar, open a few hours a day when owner Elaine Remigio, 80, wants to.

They'll occasionally travel to another Hawaiian island, but Las Vegas is their favorite destination.

"That's the only place they go," said Richard Marks, 73, a patient and the local sheriff and historian. "They say, 'People stare at me, I'm disfigured, I don't want to go out in public.' The next thing you ask them, 'Do you want to go to Vegas?' They say, 'When? When? When?'"

One man told Marks he likes the Hawaiian food in Las Vegas.

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ASSOCIATED PRESS
A statue of Father Damien.




Everyone attends one of the three churches in Kalaupapa. There are seven Protestants, three Mormons and 30 Roman Catholics.

"You take religion for what it is, and it keeps you very stable," said Harada, a Catholic. "I think religion is the greatest thing that has ever happened to me, and I'm very happy with that."

About 8,000 people have been exiled here since 1865, when King Kamehameha V instituted an "Act to Prevent the Spread of Leprosy" that forced people with leprosy or anyone suspected of having the disease to be secluded on land that was set apart. The law remained in effect until 1969, when admissions to Kalaupapa ended.

However, some of the rules remain in place. All visitors must be at least 16 years old and have a permit from the state Health Department. A maximum of 100 visitors are allowed on the property a day, including state and federal workers.

Once a year, the residents celebrate "barge day," when heavy items -- televisions, home-building supplies, appliances, cars and other items -- are brought in.

Fresh milk, vegetables, bread and meat are all brought in regularly by airplane, along with newspapers.

The state provides the patients with medical care, housing and a modest pension.

"To simply put it, it's their home," McCarten said. "The average patient has been here 50 years. ... They have become so used to an isolated way of life, they're somewhat uncomfortable on Oahu or some place like that."

Many have tried life outside Kalaupapa, but some returned when they couldn't find work and were treated as outcasts by their neighbors and sometimes their own families.

"Some of them couldn't stand it," Marks said.

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ASSOCIATED PRESS
Paul Harada, 76, a surviving Hansen's disease patient, chooses to stay in Kalaupapa even though he has had the option to leave for decades.




Makia Malo, who was sent to Kalaupapa in 1947 when he was 12, is one patient who found life on the outside. Even though leprosy stole his sight and the feeling from his hands, preventing him from reading Braille, Malo moved to Honolulu and enrolled at the University of Hawaii at age 37.

By listening to lectures and tapes while taking oral exams, he graduated seven years later with a bachelor's degree in Hawaiian studies.

"It was somewhat scary because in the back of my mind, I wasn't sure how people would accept me," said Malo, 68, who now splits his time between Honolulu and Kalaupapa.

He found that assimilating back into society was even more trying than academics.

"One of the worst things about having had this disease is that even after you're cured, society will not let you heal because of 'L' word," Malo said. "People don't know how hurtful and wrong that term is."

Kalaupapa residents compare "leper" to a racial epithet. "Today, the word leper is our new battle," Malo said.

Although leprosy patients can be freed from the disease with antibiotic treatment, the stigma can last a lifetime.

The public is still frightened of the disease, Marks said. "They have all the worst ideas about leprosy being such a contagious disease, which is plain nonsense. Over 1,100 people have come here to work since Father Damien, and Father Damien was the only one who got the disease," Marks said, referring to the Belgian priest who ministered to patients from 1873 until his death in 1889.

Harada was first allowed to leave the 8,725-acre peninsula in 1954 when he was cured of Hansen's disease, which destroys the nerves and skin. But by that time, the disease had taken away most of his fingers as well as the feeling in his hands and feet.

"When I was young, I was like everyone else, with hair and everything else," he said.

Harada said when he eventually visited family and friends, he made sure not to disclose he lived in Kalaupapa, to protect his family. But his secret eventually was exposed, which Harada came to see as "a favor."

Returning to Kalaupapa, he manages to fish and garden despite the damage the disease did to his hands.

It's unknown how leprosy was introduced to Hawaii, but it quickly took a toll on the population, especially with native Hawaiians who had no immunities from the foreign disease.

When the peninsula becomes a national park, residents say they would like to keep the settlement undisturbed and uncommercialized.

"I don't want a big tourist hotel," Malo said.

They want visitors to know about not only the segregation and suffering of Kalaupapa but also the lives of the patients.

"It's a good place. I have no qualms about this place," Harada said. "It's good enough for me."

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Frequently asked questions about
leprosy, also called Hansen's disease

Q: What is leprosy, or Hansen's disease?

A: It is a chronic disease, mainly affecting the skin and nerves. Untreated, it can permanently damage the skin, nerves, limbs and eyes. It is caused by a bacillus, Mycobacterium leprae, which incubates in the human body for two to four years. The microbe was discovered by Norwegian physician Armauer Hansen in 1873.

Q: What are the symptoms?

A: Early symptoms include reddish or pale colored skin patches that may have a loss of feeling; bumps and thickening of the skin; and loss of feeling of the hands or feet.

Q: Does leprosy make fingers and toes fall off?

A: No. The bacillus attacks nerve endings and destroys the body's ability to feel pain and injury. Without feeling pain, people can easily injure themselves. Injuries become infected and result in tissue loss. Fingers and toes become shortened and deformed as the bone is absorbed into the body.

Q: How is leprosy transmitted?

A: The disease is not highly infectious. It is believed that M. leprae is transmitted via droplets from the nose and mouth, during close and frequent contacts with untreated, infected persons. More than 95 percent of the population has a natural immunity to the disease. People having completed treatment are considered free of active infection.

Q: How is it treated?

A: Leprosy is curable, and treatment during the early stages averts disability. A multidrug therapy, consisting of three drugs (dapsone, rifampicin and clofazimine), kills the pathogen. Relapses are rare for patients in the United States who receive multidrug therapy, which can take six months to two years.

Q: How many people have leprosy?

A: In 2000, 738,284 cases of leprosy were identified worldwide; 91 in the United States. Between 1 million and 2 million people are believed permanently disabled by the disease. Ten countries account for 90 percent of cases: Brazil, Democratic Republic of the Congo, Guinea, India, Indonesia, Madagascar, Mozambique, Myanmar, Nepal and Tanzania.


Sources: World Health Organization, Centers for Disease Control and Prevention, Hawaii state Department of Health



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DAMIEN MUSEUM




‘St. Damien’ sounds good
to residents of Kalaupapa


By Jaymes Song
Associated Press

KALAUPAPA, Hawaii >> Father Damien, the Belgian priest who came to this forsaken peninsula to minister to leprosy patients, then contracted the disease himself and died, is now a candidate for sainthood.

Joseph "Damien" de Veuster arrived on Kalaupapa at age 33 on May 10, 1873. Without a home, he spent his first weeks sleeping under a tree near St. Philomena Roman Catholic church. He immediately became immersed in the horrors of the skin- and nerve-killing disease.

"He was a holy man who worked very hard and cared for people who were neglected by everybody else," said the Rev. Joseph Hendriks, the resident priest at Kalaupapa.

Damien, who died in 1889, not only shared his faith, he also restored dignity, hope and self worth among the patients. He built coffins, dug graves, constructed homes and churches and performed medical care, such as bandaging wounds.

"Nobody else did it. There was no doctor here at the time when he came," said Hendriks, also a native of Belgium. "There was no idea where leprosy came from and how to handle it. It was a question mark. It was a mystery."

In considering Damien for sainthood, church officials are investigating a reported second miracle attributed to him. This was the unexplained recovery of a lung cancer patient who prayed at Damien's grave.

The priest reached the step before sainthood canonization -- beatification -- in 1995. That was 100 years after the first miracle associated with him: the recovery of a dying nun who began a novena to him before slipping into unconsciousness.

Hendriks, 80, said he prays every night for Damien's sainthood.

"If Damien becomes a saint, he will be known all over the world," Hendriks said. "And people will learn from Damien, to love God, to serve the people. He died a martyr of charity."

Damien, often seen smoking a pipe he used to mask the odor from the patients' badly infected wounds, was scheduled to spend only three months on Kalaupapa. He stayed 16 years before contracting leprosy and becoming a patient himself. He died at age 49.

"We were lucky to have him," said Kalaupapa resident and historian Richard Marks. "I don't think of him as a saint. I just think of him as one hell of a good man, doing his job, what he was supposed to be doing."



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