Storyteller

A Hansen's disease patient's new book tells what life was like quarantined in Kalaupapa

HENRY NALAIELUA got comfortable about telling his life story to strangers 20 years ago as a tour guide in Kalaupapa, the Molokai quarantine settlement for leprosy patients.

Today, the story of the man who didn't let his life be defined by the disease will be available to a wider audience. His memoirs of Kalaupapa, "No Footprints in the Sand," will be released at a 6 p.m. reception at Native Books/Na Mea Hawaii at Ward Warehouse. The softcover book published by Watermark Publishing of Honolulu will be available in bookstores.

Nalaielua, 80, is one of 33 remaining Hansen's disease patients who were sent to Kalaupapa before the quarantine was canceled in 1969 and still call the village home.

The few tourists who arrive daily at the remote peninsula by small aircraft or on a switchback trail from topside Molokai are required to have an escort during their visit. They have usually done some homework, Nalaielua said. They would come armed with information they've read about the place, often about Father Damien DeVeuster, who cared for patients for 16 years before his death in 1889.

"They wanted to hear whatever you tell them," Nalaielua said. "I tried to be as honest as possible. They would have 1,000 questions and expected me to know all the answers." The questions stimulated him to learn more about the history of the place and its people, the estimated 8,000 patients banished there in 100 years and others, like Damien, who came as "kokuas" to live and work with the patients.

"Sometimes people would come on the bus; they would seem afraid and stick together on the bus," he recalled in an interview. "But by lunchtime, we were old friends."

Nalaielua brought a new dimension of information to those visitors, sharing his own memories. "Some of it was what people told me, people who lived there from long ago. I'd rather use what people told me than get it from books."

His story, told with the collaboration of Honolulu-born author Sally-Jo Bowman, is an eye-opening experience even for island residents who are at least familiar with the story of Kalaupapa.

Nalaielua was 10 years old in 1936 when he was forced to leave his parents in Ninole on the Big Island, their third child to be detected with the disease. His new world was dominated by the rules-ridden, paternalist bureaucracy of the Department of Health, first at the former Kalihi leprosy hospital and, later in Kalaupapa.

Nalaielua wrote: "We were denied the right to question our medications, even to ask if it had negative side effects or what it was expected to accomplish. With other rules, daily life at Kalihi came down to incarceration, a life sentence with no prospect for parole. It was a death sentence, too, because you would carry the stigma of the disease until the day you died. No matter what, you would always be known as a 'leper.'"

Although he freely uses the word "leper," which most other patients consider pejorative, Nalaielua does not take a tone of anger or the viewpoint of a victim. "You build up your own kind of immunity. I've been pretty lucky. I've tried to take things as they come and overcome the feelings."

His story is one of rascally adventures of boys who climbed over fences every chance they got. And later, he and friends at the Carville leprosy hospital in Louisiana continued the adventures in road trips around the South.

Gov. George Ariyoshi appointed Nalaielua to the state Board of Health and he has been active in the Office of Hawaiian Affairs kupuna program, sharing the story of Kalaupapa with adults and children.

Music has been a big part of his life, singing in numerous choirs, playing in bands for parties and luaus, and jamming with visiting professional musicians.

Nalaielua's book is "a story of triumph," said co-author Bowman, who lives in Oregon. "He just kind of said, 'Yes, I have this disease, so what?' It's an upper of a book. If it weren't, I wouldn't have worked on it."