We went to serve, as thousands of people have done, the patients of Kalaupapa. Though there are only ten Hansen’s Disease patients left of the 7,600 banished to this isolated peninsula on the island of Moloka’i, we went as kokua (helpers) to do the most ordinary chores for the National Park Service, which oversees some of the most sacred ground in the United States.
This is a place where, for 103 years, people with what is more commonly known as leprosy, were sent if they were so much as suspected of having the disease. And it is where kokua—family members, priests, nuns, ministers and other religious folks, medical people and others—served the patients, who were segregated from society in great act of social injustice.
A dozen of us flew into Kalaupapa on a rainy morning in May, all of us Sierra Club members from across the country. Dick and I have participated in two other Sierra Club service trips to Kalaupapa—the first in 2002 and in 2012. We probably wouldn’t have done another one (it’s breathtakingly expensive—about $300 a day person for the most modest accommodations you can imagine in Hawaii, but it includes food and air transport in and out of the peninsula), except that Lynne Simpson was leading what was likely to be her last service trip.
Lynne and her late husband Ray Simpson were the ones who in 1970 led a Sierra Club hiking/camping outing to Kauai and Moloka’i that Dick and his late wife Mary Lou went on. They and other participants were among the first groups to be allowed to hike into Kaluapapa from topside Moloka’i, as it’s called.
On that first visit the hikers were toured around the peninsula in a beat-up stretch limo by Richard Marks, former patient and sheriff of Kalaupapa. Dick and Lynne would see Mr. Marks as they came to visit over the decades, and it became clear that he was one of the patients who made it possible for more visitors to come to the peninsula. It was off limits to most people until 1969, when the patients (who’d had their Hansen’s Disease arrested with drugs beginning in the 1950s and were no longer contagious) rose up in their own small civil rights movement. They demanded that they be free to come and go from Kalaupapa like any other American citizens. This was not met happily by the state health department, but the patients eventually prevailed, and they were finally granted their freedom in 1969. There are only 10 of them left now.
The deal was that they could live at Kalaupapa or come and go for the rest of their lives. In 1980 a deal was struck with the National Park Service to put Kalaupapa under the jurisdiction of the NPS to prevent it from being developed. The story goes that the patients couldn’t bear to imagine their beloved and beautiful peninsula developed into condos, and the national parks people would protect it. Besides, the place is still very hard to access. It’s at the base of the tallest sea cliffs in the world, some 1,500 to 3,000 feet tall. You can only get there by hiking down a very steep trail or, if you’re a tourist, you can be part of a mule ride that takes visitors down a few days a week for an afternoon tour. Or you can fly in on a small plane.
But the peninsula is largely inaccessible by boat (the seas are too rough), and a huge barge comes once a summer with items like cars and refrigerators and other large items. It takes away dead versions of those items, too. Food and mail are flown in several times a week, which is how we arrived in Kalaupapa, too.
It’s been 48 years since Dick and Lynne first hiked into Kalaupapa, and 50 years that Lynne has been leading Sierra Club outings. Dick is 75 this year and Lynne turned 80 a few days before arriving in Kalaupapa. In my humble opinion, neither of them should be doing major physical labor any more. But these people are troopers, and they dove in with great spirit and not a little muscle. I watched them both, wondering if this might be the last time they might go to Kalaupapa to, frankly, schlepp for the park service. That’s still the only way outsiders can stay on the peninsula, by the way—to be invited as the guest of someone who lives or works there or be part of a volunteer group. On our trip a dozen hard-working volunteers had come to do chores—and Dick and I were deeply impressed by the dedication and sweat exerted by these folks, doing, among other things, removal of trash and detritus that floats in to the beaches and lopping and pulling out nonnative plants at the edge of one of the cemeteries.
I say “one of” because approximately 7,600 people lived and died at Kalaupapa and are buried there in a number of cemeteries, though only about 1,000 of them lie in marked graves. Every inch of that peninsula is sacred ground. So it was with great respect, reverence and appreciation that we returned to Kalaupapa.
This is the place that gave the world two saints—Father Damien, who arrived in 1873 to care for the lepers, and Mother Marianne, who brought six nuns with her in late 1888 to care for the ailing Damien, the only religious kokua (Hawaiian for “helper” or “helping”) who came to the peninsula who contracted the disease and died of it. It turns out that you have to have a genetic predisposition for Hansen’s Disease; only 5% of the population is susceptible to the disease.
But the Hawaiians were highly susceptible, as they were to pretty much every disease brought by white people. They died in droves of things like measles and the flu. Leprosy must have seemed tailor-made to attack their vulnerable immune systems, and people lived in fear of mai pake (the separating sickness) because if they got sick or were even thought to have the disease, it meant lifetime banishment. Most people sent to the peninsula never saw their families or friends again.
But the patients of Kalaupapa became each other’s family and friends. Many of them lived for years; the disease didn’t necessarily kill people quickly. They married each other and had children, though after 1909, the children were taken from the parents to be raised by family members or put in foster care, hoping to prevent them from acquiring leprosy.
It must have been excruciating for women to give birth and not be allowed to hold their children, much less nurse them, to have them immediately taken away. To this day, children under 16 are not allowed at Kalaupapa since so many patients had theirs taken away.
One of the many lovely things about Hawaiians is that they have a system called hanai in which relatives or friends raise other people’s kids. This was often done in the old days if people had many children and needed help, or to give people who couldn’t have kids a way to raise some. It wasn’t as if the kids didn’t know who their birth parents were—they generally did. The Hawaiians were and still are great examples of “it takes a village to raise a child.”
And, once people’s kids were over 16, they were allowed to come visit their folks at Kalaupapa, though they still were not allowed anything resembling physical contact. For decades the “healthy” were separated from the “sick” in long buildings with screens across the middle. One of those visitation buildings still exists to show how segregated people were, though the screens have been taken down, along with most of the fences that separated patients and kokua (as signs on one of the public restrooms still read).
We stayed this time in the only building, the nurses’ quarters, which still has a symbolic picket fence around it. Our room in the single-walled building (i.e., no insulation, including heat or air conditioning) had two twin beds and a small table between them, a tall dresser, a closet with hangars and a shared bathroom. The last time we were there, we stayed in another building without anything like a dresser, hangars or table. Things have improved in the visitors’ quarters!
We arrived at the little airport in a downpour and learned from our host, biologist Paul Hosten, that it had been raining pretty much constantly for a month at Kalaupapa. He had a schedule of things he wanted us to do, all of which were outdoors and not do-able in heavy rain. He put some of us to work the first day sweeping and mopping the social hall where a major meeting was to take place the next day.
The second day, more rain. But the bonus for us on those first two days was that we got to do things not on Paul’s list, such as take an excellent guided tour of the peninsula by Ryan Poland of Damien Tours, founded by Richard Marks and his wife, Gloria.
Finally, on the third day, the sun came out, the mist cleared over the pali (cliffs) and we had a unique tour from Valerie Monson of Ka’ Ohana o’ Kalaupapa, an amazing nonprofit organization that helps descendants of patients find their ancestors’ graves. One of our leaders, Gloria Amaral, has an ancestor, John Santos, buried in Papaloa cemetery, which looks out on a glorious stretch of beach. Valerie arrived at Kalaupapa just to show Gloria the site of her ancestor’s grave, and, as a bonus gave our group a wonderful tour of the cemetery and later a great Powerpoint presentation about the work of the Ohana.
After our cemetery tour we went to work (finally!) doing beach clean-up just behind the cemetery, where we got to see three mama monk seals, which are endangered, with their new babies on shore and playing in the shallow waters. Kalaupapa is a prime spot for mothers and new babies—while we were there, three pairs of mothers and babies as well as a lone male monk seal were regularly beaching themselves for snoozes.
After lunch we visited with the two nuns of St. Francis, Sister Barbara Jean and Sister Alicia Damien, who are the spiritual descendants of Mother Marianne and the first nuns who came in 1888 to Kalaupapa to care for the ailing Father Damien and set up a school for girls. They had us for tea and coffee at the Bishop Home, which Mother Marianne and the first sisters set up as a home for girls. We were honored to hear the stories of the former sisters from the current sisters, who volunteer in a variety of capacities at Kalaupapa.
We also got a great tour of the museum from curator Julia Aleszczyk where so much history of the settlement is kept. This is Julia with paintings by patients Elaine Remigio (the kitty) and Ed Kato (the Kalawao landscape).
From old wheelchairs to plaster casts of patients’ crippled feet to tools adapted for use by people who had lost fingers, Julia pulled out drawer after drawer to show us the artifacts of the place. I was tickled to see a couple of Dick’s 1970 photos of Richard Marks hanging in the museum with the original wooden cross used on his grave.
On the fourth day, the 145th anniversary of Damien’s arrival at Kalaupapa, many of us rose in the dark to go to mass at St. Francis Catholic church with the sisters and one patient who regularly attend. But it turned out that there was a relative crowd that morning at St. Francis Church, and we got to sing a special song about St. Damien. We felt honored to be there on that anniversary day, though we were going to have to leave before the big weekend celebration in Damien’s honor.
After mass and breakfast, we helped clear an area behind that cemetery of non-native plants for Momi Hooper, who is Hawaiian and a park service employee. Her grandmother oversaw a mausoleum on Oahu where ali’i (royalty) are buried. Fittingly, Momi, among her many duties, also tends the cemeteries and does repair on crumbling headstones at Kalaupapa. Like her grandmother, she is kokua to the ancestors.
That afternoon we went out to a more distant beach beyond the airport and the lighthouse with the park’s marine ecologist, Eric Brown, and his intern, Alix, from France, to do more clean up. That beach is far more littered with detritus that washes ashore, and even nine of us working for a couple of hours barely made a dent in the amount of garbage out there, it seemed. Still, we gave it our all.
On the fifth day, our last one at Kalaupapa, we again rose in the dark and driven out to a distant tidepool area by dawn to remove “alien algae” with Eric and Alix. (Dick and I went but opted not to go in the slippery pools. We stayed atop the old lava flow, collected trash and took photos of the folks down below.) Some of us were out there longer than planned due to a flat tire on the van that took us out there—more adventure! But Eric saved the day by returning with a pickup truck to retrieve us and returning us to our quarters for a late breakfast (fantastic omelettes by Richard Torrey!) and time to pack and clean up our quarters before we departed.
Once again, the team did a great job—leaders Lynne Simpson, Jan Torrey and Gloria Amaral, along with participants Suzanne Doodan, Christina Fowlks, Roland Fowlks, Jeff Joneson, Liz Simpson, Richard Torrey and George Zweibel. And us, of course.
Late that afternoon, in sunshine, we left Kalaupapa, gazing out the windows of the small plane carrying a bit of the mana, the life energy, of that sacred land.
In our own small way, the dozen of us Sierra Club volunteers performed a bit of kokua at Kalaupapa, and that, more than any kind of vocal appreciation (which we got, too), was our reward.
The thing about Damien and Marianne and all the others who followed them as kokua to patients—whether they were nuns or priests or brothers or pastors or family and friends of the patients—was that they operated from a place, first and foremost, of love and compassion. They couldn’t save these people; they died, eventually, of this disease. But Mother Marianne made lovely dresses for the girls. The children went to school. There was a boys’ band a girls’ choir. They made coffins for them when they died and had meaningful funerals for them.
These kokua loved the patients and encouraged them to love each other for as long as they were on earth. Which, when you think about it, is what we’re all here to do: to live and grow in love.
Kalaupapa has been a place of immense suffering and sorrow. But it is also a place of joy and community, and the stories of the people who lived and died there can help the rest of us who walk the path every day between this paradox of life and death. We have to hold the full truth of this reality, but instead of fighting it and staying locked in suffering, we can be willing to look at it differently, to transform the dark side of things. We can’t reconcile this paradox—it’s not solvable. But with patience, humility and forgiveness (especially of ourselves), we can live the two sides of this great mystery. This is grace, which is always available to us, and it (not the suffering) transforms us, often without our knowing it. We look up one day, and we realize we are living this duality more than we are fighting it.
I came away from Kalaupapa reminded that we are here for each other as kokua all the days of our lives. It is one of those small things, as Mother Teresa said, we do with great love, as it has been done in Kalaupapa, a place of great suffering, for more than a century.
This is what we do as humans: We go through the fires of great loss and other suffering. We come out annealed—heated, then cooled, like steel or glass—which softens us and makes us less brittle. We are transformed with grace.
We kokua others as we have been kokua’d.