KALAUPAPA, Hawaii (RNS) 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 ministered to the settlement.
With the Oct. 21 canonization of Cope 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."
Patients such as Marks describe 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 recall burying spouses, having babies taken away and spending family visits with a chain-link fence separating them from their relatives.
Still, many 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 now 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 leper 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 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.
The first exiles -- 12 patients, one stowaway child and several kokuas (family members acting as helpers or caregivers) -- were taken to Kalaupapa by boat on Jan. 6, 1866. By 1873, when Father Damien began working on Kalaupapa, about 600 patients had been shipped there. In 1890, two years after Cope and several other Franciscan sisters from Syracuse, N.Y., 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.
In 2005, when the remains of Cope were exhumed as part of the Roman Catholic Church's canonization process, 37 patients remained on the settlement's rolls; 28 still called Kalaupapa their permanent home.
Nine leprosy patients sent to Kalaupapa will take a pilgrimage to Rome for Cope's canonization later this month.
Sister Francis Therese Souza, 69, has worked as a nurse on 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.
"It's a little harder each time one of them dies," Souza said.
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 she may be the last Franciscan to do so.
"I might be the one to close the door for Mother Marianne," she said.
Sister Theresa Chow, one of two Franciscans living at the settlement's St. Elizabeth Convent, learned when she moved to Kalaupapa that she is related to a patient. Honolulu Bishop Larry Silva learned about 15 years ago that his great-grandfather and a great aunt died at Kalaupapa.
To Clarence "Boogie" Kahilihwa, 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.'"
After being treated at a hospital, he chose to move to Kalaupapa. "Old people said,'Why you shut your life away from society?'" he recalled. "For me it was better. I had a brother and sisters there."
His wife, Ivy, recalls an aunt leaving home and never returning. When she developed spots on her face and hands, "I did not know what it was. They told me I had to be separated. No one told me what it was."
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 the children would contract leprosy. 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 2008, Hawaii acknowledged such situations when the state legislature passed a resolution apologizing to former leprosy patients for the policy of exile. The Hawaii Department of Health is committed to caring for patients, providing housing, medical care, meals and modest stipends.
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. The park service is working on a long-term plan that will include preservation, education and interpretation of the site. There will be no recreational use, and no sea access is planned.
"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."
(Renee K. Gadoua writes for The Post-Standard in Syracuse, N.Y.)