KALAUPAPA - At 81, Barbara Marks is among the last 17 leprosy patients Hawaii banished to the remote peninsula of Kalaupapa. Over more than 100 years, beginning in 1866, more than 8,000 were separated from their families and taken to this distant point on Molokai, where Mother Marianne Cope, a nun from Syracuse, ministered to the settlement.
With the upcoming Oct. 21 canonization of Mother Marianne at the Vatican, and their numbers dwindling, the remaining patients are eager to make sure their stories are recorded and their home preserved.
"I've heard people say it would be a nice resort," Marks said. "I don't want them to do that to Kalaupapa. I don't want it to change. It's our home."
St. Philomena Church is where Father Damien ministered for 16 years on Kalaupapa. He died in 1889 after contracting leprosy. He was named a saint in the Roman Catholic Church in 2009. Mother Marianne Cope arrived on Kalaupapa in 1888 and pledged to continue his work; she is to be canonized Oct. 21.
Syracuse (N.Y.) Post-Standard / RENEE K. GADOUA photo via AP
In August interviews, patients talked about their lives and the future of the settlement. They described doctors taking "snips" of their skin to test for leprosy, being poked and prodded and stared at as if they were "a monkey show." They recalled burying spouses, having babies taken away and spending family visits with a chain-link fence separating them from their relatives.
Their conversations included flashes of anger and regret, but all spoke with affection for the place they call home and their connection to the Hawaiian history that created two Roman Catholic saints: Father Damien and soon Mother Marianne.
"I had a lot of sadness, but my life was not all bad," Marks said.
Their stories date to 1865, when Hawaii's King Kamehameha V implemented a policy of forced exile by approving the Act to Prevent the Spread of Leprosy.
Kalaupapa was chosen as the site of what became the world's first leprosy colony because of its location. Cliffs as high as 2,000 feet cut the settlement off from the rest of Molokai, which is approximately in the center of Hawaii's eight main islands.
Today, the small village is a quiet, pristine retreat seemingly untouched by modern life. Black lava boulders hug the shores, and the waves are a constant, rhythmic backdrop. Visitors require permission; access is a rocky journey down a 1,700-foot mountainside by foot or mule, or by nine-seat plane.
By 1873, when Father Damien began working on Kalaupapa, about 600 patients had been shipped there. In 1890, two years after Mother Marianne and several other Franciscan sisters from Syracuse began their ministry, the patient population reached a high of about 1,200. In the early years, survival was rare. Ten of the first 12 patients died within two years.
By the 1940s, medication had been developed that prevented the transmission of leprosy, now called Hansen's disease. Few patients were forced to Kalaupapa after 1949, and Hawaii formally lifted the quarantine in 1969. Patients were free to leave. But many chose to stay: Kalaupapa had become home, and other patients were family.
Sister Francis Therese Souza, 69, has worked as a nurse in Kalaupapa since 1989, when 99 patients lived there. She is one of about 61 Franciscan sisters who have ministered there since 1888. Three sisters live there now, Souza and two who serve as volunteers with the National Park Service.
Every day, she remembers her connection to the Franciscan sisters who traveled 5,000 miles into the unknown to dispense medicine and compassion. She's conscious that she may be the last Franciscan to do so.
"I might be the one to close the door for Mother Marianne," she said.
Elroy Malo went to Kalaupapa in 1948 at age 12. Three sisters and a brother were already there. Although he had visited his siblings, he didn't know why they had been sent away.
"My parents never explained anything to me," he said. "No one talked about it."
Malo, who will turn 78 on Wednesday, eventually lost the use of his hands and feet; he lost his sight at 30. He lives at Hale Mohalu, a state-run extension of Kalaupapa, because his health is fragile. His memory of Kalaupapa is that "it was fabulous. We could go hiking and hunting in valleys and swim anytime. We went spear-fishing. We were just stranded there, and yet I loved it."
But to Clarence "Boogie" Kahilihiwa, who went there in 1959, "it was like a prison." Two sisters and a brother had been sent to Kalaupapa ahead of him, he said.
"We were mostly programmed. They made me feel dirty. 'Go here, don't go there, don't touch that.' You could not get close. They were strict. Maybe some were scared. Maybe they were ignorant. A couple of times I said to myself, 'Why did I become a patient? Maybe I did something bad and was punished.' "
For Gloria Marks, who came in 1960, Kalaupapa meant marriage - in 1962, to fellow patient Richard Marks - and a family. They had two sons, who were raised by her parents because health officials worried that the children would contract leprosy. Did she miss not seeing her boys' first steps, taking them to school?
Marks shrugged. "All these things were done by my mother," she said. "It does not make me sad. It's what my life is."
Barbara Marks also had a child, Edward Kaito Damien Marks, who also was raised by her mother.
"I didn't want to hold him," she said matter-of-factly. "I didn't want him to end up like me. There was nothing I could do. I had to be strong."
In 1976, Kalaupapa was designated a National Historic Landmark and, in 1980, Kalaupapa National Historical Park was created. As long as patients remain, the state of Hawaii and the National Park Service will continue to provide services and protect their dignity and privacy, said Stephen Prokop, Kalaupapa park superintendent.
"It's not a traditional place to come and swim and surf," Prokop said. "It's a sacred place, and we want to respect that."
In 2009, President Barack Obama signed federal legislation that authorizes a memorial for the estimated 8,000 former patients buried on Kalaupapa. Only about 1,300 are in marked graves.
Life stories are recorded in the cemeteries, said Barbara Marks. Her husband died in 1997, and she visits his grave frequently. Her aunt, Christine Camacho, was sent to Kalaupapa in 1938 at age 18. She died in 1948, a year after Marks arrived at age 15.
"I was heartbroken when she died," Marks said. "I want to be buried next to her."