Hansen’s patient numbers dwindle with recent deaths

The number of Hansen’s disease patients in Hawaii has fallen to 14 following the recent deaths of two patients at the state Department of Health’s Hale Mohalu Hospital on Oahu.

On Molokai’s isolated Kalaupapa Peninsula, where seven patients remain, “it’s very sad, very quiet,” Beverly Chang, the settlement’s acting administrator for the DOH, said Tuesday.

The other seven patients are being cared for at Hale Mohalu, where Edwin “Pali” Lelepali died Sunday. He was 89.

In 1942 Lelepali was exiled as a boy from Palama to Kalaupapa, where he grew up with other patients afflicted with Hansen’s disease, said his Hale Mohalu social worker, Sheldon Loui, who had known Lelepali for 17 years.

Lelepali’s death followed the October death of Nancy Brede, 92, at Hale Mohalu. Her husband, Jimmy Brede, 87, still lives there.

“She died just before her 93rd birthday,” Loui said. “It had been over a year since anyone had died. She had been sent to Kalaupapa as a child, 13 years old. Nancy Brede was the longest resident on the Kalaupapa registry.”

Valerie Monson, coordinator for the nonprofit Ka Ohana o Kalaupapa organization, remembered Nancy Brede “for having this incredibly beautiful singing voice. No one sang ‘The Sunset of Kalaupapa’ as lovely as she did. She and Jimmy had this incredible love story. They met at Kalaupapa and were very much in love. She was always very stylishly dressed. She wore nice muumuu and always had some kind of hat and was always so elegant-looking.”

At Kalaupapa, Lelepali met his future wife, Rose, who worked at the hospital. Rose died more than a decade ago, said Ruth Freedman, who worked as a nurse at Kalaupapa.

Last week Lelepali had been visiting on Oahu and had just bought $300 worth of duck, roast pork and char siu for his annual Super Bowl party that he threw for patients and federal and state staff at Kalaupapa’s McVeigh Hall, Loui said.

“His body just sort of shut down,” Loui said. “Once everybody knew he was ill at Hale Mohalu, the word spread in Kalaupapa, and a lot of his friends flew over and joined a lot of his friends in Honolulu, which is a lot. They all came by to pay their respects. A lot of them stayed through the night, and they played music and shared stories over the last two days.”

Hale Mohalu staff sent Lelepali’s food on to Kalaupapa so his friends could enjoy the Super Bowl party he had organized for them.

Lelepali and Brede were part of a history that began after contact with Westerners introduced Hansen’s disease to the islands in the late 18th century, according to the National Park Service.

The Hawaiian government responded to the epidemic in 1860 by sending the first of 8,000 patients to the isolated, remote Kalaupapa Peninsula tucked between sea cliffs and the ocean. Policies that kept patients quarantined in the settlement were lifted in 1969.

Today federal National Park Service workers and state Health Department staff far outnumber the seven patients on Kalaupapa who remain from a heartbreaking period of Hawaii history, when families were torn apart by a then-incurable disease.

The National Park Service continues to work on a plan for how to care for Kalaupapa National Historical Park once the last patient dies.

The two youngest surviving Hansen’s disease patients are in their 70s, Chang said.

Along with the annual Super Bowl party, Lelepali organized parties for Easter and Christmas and even Halloween, although he would not wear a costume, Chang said.

“He just wanted to make everybody happy. That was his thing,” she said. “He was a funny guy, and everybody had their moments with him. He was also amazing playing guitar and ukulele. Music was one of his joys. He had his guitar in his truck wherever he went.”

Loui said, “He was sort of a shy person who preferred to stay in the background,” adding, “but he was also social and loved to throw parties.”

Lelepali also ran the Protestant church at Kalaupapa.

His being sent to Kalaupapa as a boy meant the end of his relationship with his family on Oahu, Loui said.

“Back in the ’40s the families kept it a secret and didn’t make it known that they had children with what was then known then as leprosy,” Loui said. “From that point on, contact was minimal, and the other patients and kokua became his family.”

But the experience did not embitter young Lelepali, Loui said.

“If you ever met ‘Pali,’ he wasn’t a bitter man,” Loui said. “A lot of the Kalaupapa patients just accepted the way things were and made the best of their community.”

Lelepali did not like to be photographed and rarely granted interviews, Freedman said.

He also declined to make the long trip in 2012 with other patients to visit Mother Marianne Cope’s origins in Syracuse, N.Y., then travel on to Rome to witness her ascension to sainthood for her work at Kalaupapa.

“He wouldn’t have any part of it,” Freedman said. “He was very modest, very humble. He never wanted to have his picture taken or give interviews. He didn’t want to be sensationalized. He said, ‘That’s not for me.’ He just did not want his life to be broadcast that way.”

But Lelepali used any occasion to throw a party on Kalaupapa and would fly to Oahu to buy provisions.

“I would run him all around doing his shopping,” Loui said. “He especially enjoyed going out to eat. He loved his pork chops, he loved roast pork and roast duck. … He would go to Duck Lee (Chinese Express Foods) in Market City and buy four pounds roast pork, one whole duck and four pounds char siu. The Chinese ladies would all smile when he walked in.”

Lelepali’s death is particularly hard for the remaining patients “because Pali was one of the most popular, well-liked patients,” Loui said.

“Any time they pass there is a hole in the community, and with only 14 patients left, every loss becomes a little more important,” Loui said.

At the same time, he said, the most recent deaths of Hansen’s disease patients are part of the long and painful history of Kalaupapa.

“Because the patients have seen so many deaths over the years,” Loui said, “they accept death better than other people. From the time they were children, all they’ve seen is people dying. By now their coping mechanism is pretty good.”