The Painful Shore: Among the Dead and Dying of Kalaupapa
Kalaupapa is a land of no children. This isolated settlement was once a living tomb where thousands diagnosed with leprosy were buried in shallow graves. Their descendants live on in a sleepy, cottage-lined village near the shore. These are the last days of this place; all who live here are old, dying. Before long, the last person will die and it will be the end of an era many would rather forget.
To come here you must have permission and a sponsor. Behavior is strictly monitored; you have to sign forms and waivers before you speak to any of the patients. There are few ways here: one is to fly; another to take a mule ride from topside Molokai; and the other, the most rewarding, is to walk. It is not a journey for the weak. Charles Warren Stoddard wrote that the whole face of the abyss was a cataract of verdure, breaking into a foam of flowers, and upon this cataract, we were balanced like birds of the air. Going down, Stoddard was dropping, slipping, shambling across a sharp flank of cliff that cut the air like a flying buttress. Another astute visitor wrote that the huge furrows on the face of the precipice soon come into view, assuming a leonine countenance after its many years of vigil over the unfortunates below.
Photographing people is prohibited and you are forbidden to wander past the village borders unescorted.
People here do not want to talk. Hundreds of journalists have come here for their story about the exotic leper colony. Photojournalists have taken thousands of photographs of everything. Busloads of tourists arrive daily to gawk at the townspeople. They are sick of being a freakshow.
I learn the hard way. Ten minutes after arriving I approached the post office, where a woman was shuffling papers. I am a merciless inspector of other peoples lives and blurt out a series of privacy-invading, amateurish questions.
She doesn’t answer and I curse my stupidity. I put my notebook in my pocket and listen. Her name is Kuulei and she loves her dog, a hairless Chinese poodle with a sweater and a haircut. She loves her dog like a child. She talks to the dog and nuzzles it like a baby. There are about 35 people here and plenty animals, plenty mongoose, plenty cat, plenty dog. We aren’t allowed to have children here so we have animals, she says, conferring with her tiny dog. Leprosy affects the eyesight, and many people here are blind. Her thick glasses magnify her watery eyes. You have to stay busy here, you will get lonely if you dont stay busy…I take care of my friend Lucy who has Alzheimers, Kuulei tells me, her cartoonish eyes staring towards a horizon of nothingness.
Diseases have histories. In many parts of the world and for many years, those afflicted with leprosy have been treated inhumanely, denied their civil rights. The story of leprosy in society is the story of cruelty, defined.
History, ancient and modern, tells a painful story of violence inflicted upon those found to have the disease. The stigma lasts beyond death; even the children and relatives of the infected carry the burden. During the Middle Ages in Europe, they were declared dead. Lepers had to wear bells to warn others they were approaching. Many were very executed and buried in shallow graves.
The Kalaupapa store has a storage bunker feel to it; cans of tuna, Spam and sardines are stacked upon the sparse shelves. This is where people buy their day-to-day items. Everything else is bought by boat. You need one washing machine, one dishwasher? You gotta wait ’til next year. The Hawaii Department of Health brings it by barge. You can get one car, stove, clothes, television set by da boat. Everything else, grocery kine stuff, you buy ‘em hea. Plenty food fo’ eat.
I am harangued by a woman for writing inside the store; you come here to buy, not to write, she says. She wants to know who invited me, why I am here, when I will leave. She wants me to leave now, her body language says. Wha’ts my name? How did I get here? In Kalaupapa people will interrogate you aggressively. Where are you walking to, what are you doing there, what are you writing, who told you about this place. Much of their lives have been an Orwellian dreamscape of control and surveillance; the gaze is easily turned onto others.
In Kalaupapa, administrators outnumber residents, an oppressively paternalist arrangement. I get the feeling many here have never felt in control of their fate. The crushing bureaucracy dominates conversations: the Health Department wants to do that, the State wants to do this. Although it looks like a sleepy village, the fact that everyone here is called a patient and the obsessive minutiae of rules and regulations blurs the line that separates town, hospital and prison. What will happen when the last patient dies? Constant reiteration of one’s own mortality creates fatalism. People become walking corpses, among the living but always reminded of their impending death.
Religion is never far away in Kalaupapa. The minuscule settlement has three churches. Even the graveyard is separated along spiritual lines: Protestants here; Catholics there; Mormons and Indigenous Hawaiian elsewhere. To be an atheist here is unknown. For residents of Kalaupapa, religion represents a lifeline to the other side. The suffering that is endured through life has an end and salvation is near. Father Damien came here to help these people and paid with his life. He is depicted either as a fresh-faced innocent, or – oftentimes – stricken with leprosy, nearing death, with festering sores on his face. The mythology surrounding Father Damien makes these wounds beautiful and noble. Like Atatrk in Turkey or Mahatma Gandhi in India, Father Damien emerges as a kind of god figure. People have tattoos of his face, there are statues of him, and his graveside is a place of pilgrimage. Father Damien ceased being human and is now a symbol, the heroic demigod who died for our sins.
My sponsor, Father Joseph Hendricks is a kind and inquisitive man. He lives in a tiny house on the property of the Catholic church on the Kalaupapa settlement. His is a house of an old person, filled with tiny knick-knacks, doilies, family photos and books. He spends most of his time on his La-Z-boy, napping until it is time to do something better. Father Joseph is from Belgium and speaks with an impenetrable Flemish accent. He often lets visitors stay in his home for a donation if they promise to behave. He is pious. When we first met, I asked him if he liked Tin Tin, the classic comic from Belgium. Everyone knows Tin Tin, except Father Joseph Hendricks. It’s not in the Bible, he shrugs, before patting my head like a lost grandson. Father Joseph Hendricks is sick, freshly recovering from a bout of bladder cancer. Age is taking its toll; he has trouble walking and once asked me to help him to put bandages on the corns of his feet. I need you to be nice to me, he said. At night he would cook us dinner and we would eat. He had a new bottle of Martineli’s sparking apple cider in his refrigerator for special occasions. After dinner he would pour wine and I would tell him stories of places I had been in the world. He would listen with rapt attention; he has been nowhere in the world except for Belgium and Hawaii. He wanted stories from Athens, Anatolia, Jerusalem, Armenia, Israel; holy places he had read of. He is lonely in his little house in Kalaupapa. One of his favorite things is to get the mail and he always comes in with a neat stack of envelopes and packages, smiling like a schoolboy. The other day he received a portrait painting of Mother Marianne Cope, a saintly nun who once worked here. Yesterday he received a bouquet of flowers from a woman in London; today he gets a card from a man in Ireland.
Father Joseph Hendricks used to be in Maui, at the Holy Rosary Church in Paia. One warm summer night a man escaped from the Maui Jail and found his way to Paia. Planning to escape into the jungles of up-country Maui, he, being a Catholic, entered the Holy Rosary Catholic Church on Baldwin Avenue, where Father Hendricks was completing his prayers before sleep. The man was distraught, wanted to commit suicide, wanted Father Joseph to give him the answers, make it go away. He was in prison for a crime he didn’t commit, he told Father Joseph, and was going to be hanged for it. At this time Maui had this, how you call? he asks, making a choking motion with his hands… Hanging, I tell him. Yes, hanging. He didn’t want to be hanged. He couldn’t stand this. Now that he had killed a guard, he was going to be executed for sure, the man thought. Father Joseph offered to make him a sandwich. He made the fugitive promise not to kill himself, promise on the crucifix that he would not do it. Fugitive said he would not. He lied.
Father Joseph heard the shot while he was in the kitchen, preparing the man some food. He went back to his room and found blood, brains and smoke from the primitive pistol used to inflict this crude violence upon the two men. Father Joseph, a gentle person, loses composure retelling the story, biting his lip hard, tears streaming down his face, his rail-thin body shaking at the memory. It vas the vorst day of my life, he says, ab-so-loot-lee de vorst.
It killed me to watch such a good man cry.
I wish to see the outskirts of the village on my own. I wait until I hear Father Joseph’s sonorous snores, pack a small sandwich, notebook and Walkman, and sneak out. I want to see this place on my own terms, make my own notes uninfluenced by someone else’s narrative. I don’t want a tour. I walk in the dark listening to Devo and using the moonlight as illumination. I come to the end of Damian road to the small park where the tour groups sit and eat their lunches. The tiny vertical island of Okala where the opening scenes of Jurassic Park were filmed looms silently out of the darkness. Sailors used it as a landmark for Kalawao; the narrow canal between Oakala and the peninsula is where the youthful, helpless and elderly were dumped into the rough waters. Those unable to swim simply drowned; many others chose to swim the other way, into the rough seas and their death.
The beach, a rocky strip of land, is where many spent their last days. It was Darwinian: the law of Kalawao was survival. The place had a motto: Aole kanawai ma keia wahi – In this place there is no law.
In the early days, the appropriate treatment for the leper was exile and isolation. So much the better if those banished died early. I smoke a joint and reflect on the cruelty.
I turn to walk toward town. Along the roadside are evenly spaced pillars which, I find later, were the foundations for the Federal Leprosy Investigation Station. Here, where I am walking, medical experiments were performed on people. I continue onward along a stone wall lined road. Robert Louis Stevenson, one of the many famous visitors to the Kalawao settlement, remarked that they reminded him of those found in rural Scotland, among those who have lived in the same place for generations. The only difference, Stevenson observed, was that these walls were built by those with bloody hands.
In the distance I can see the Molokai Light, a formerly powerful lighthouse that residents on the settlement used to use as a beacon. One resident, in an interview with the Maui News articulates the importance the light had for the people here:
They talk about the Statue of Liberty. Well, this light was the first thing that hundreds of thousands of immigrants to Hawaii saw when they came here. Every one of our people can remember this light looking over us. It has been here longer than any living person has. It is the Kalaupapa light.
I arrive at the church where Father Damien preached. The door opens easily. Inside it is completely dark, silent and smells old. In this building many forlorn people received a love and care they never knew possible. The moonlight casts beams of light through the windows. I run my hands along a pew and snoop around the church. Looking from one of the windows, one gets a view of Father Damien’s grave. After being buried here, his body was returned to his hometown of Tremelo in Belgium. Only his hand is buried near where I stand.
Adjacent to the modest church is a large field where there are many shallow, unmarked graves. A killing field. A healthy man with a shovel could excavate skulls and spines in minutes. I walk to the center of the grassy field. Once the air here was putrid from the smell of rotting flesh and decomposing bodies. Doctors and the clergy often smoked pipes to cover the smell. The elements, which have been calm and pleasant, suddenly grow violent. The temperature drops, the wind knocks my notepad from my hand. A flock of birds from one of the trees circles the field in slow, lazy circles above my head. The moon is covered by the clouds and the surf pounds the shore. This place is kapu. I must leave.
Arriving home, I open a book to a poem about Kalaupapa:
On the shores of Kalaupapa
We stand with heads bent low;
Shut away by high barrier cliffs
We recall our own vanished Island
Farewell, Farewell, beloved home!
Never shall we see thee more.
Constantly we implore God
To lift this affliction laid upon us.
Leprosy has tormented humans for thousands of years. An account of the disease appears in 1552BCE on an Egyptian papyrus, although this is speculation made by modern scholars and could be wrong. What some believe to be the first reference to leprosy is contained in the book of Vedas, written in about 1400BCE. The Indian leperologist Dharmendra and others track the first reference to the disease in the ancient Hindu text Sushrata Samhita, written in approximately 600BCE. A student of Confucius was said to have suffered from leprosy. The incident is mentioned in the work of Analects: Pai Niu is sick. The Master went to see him and holding his hand through the window exclaimed Fate kills him. For such a man to have such a disease! Another Chinese text, the Nei Chi, mentions loss of eyebrows, numbness, nodules in the face and other ailments common to those suffering from leprosy.
The book of Leviticus proscribes appropriate treatment for those suffering from leprosy, He shall dwell alone, and without the camp shall his habitation be. When the scholars of Alexandra translated the Old Testament from Hebrew into Greek, they rendered tsaraath into lepra, later corrupted into leper, meaning scaly. In Europe, it is widely believed that the invading armies of Darius and Xerxes introduced the disease into ancient Greece in the fifth century BCE. The globetrotting armies of Alexander the Great brought the disease to Egypt by way of India a century later. The soldiers of Pompey and later the Roman conquests may have spread the disease into Europe, or possibly the Crusaders. Aristotle described the disease in some detail. The first accurate depiction of leprosy was by Aretaeus the Cappadocian, who described it in 150ACE as elephantitus. He wrote of loss of toes and fingers, and ulcerations of the knees, chin, cheeks and elbows. This too, under the microscope of historiography proves to be spurious. It is more likely that, through an error in translation, elephas acquired an association with lepra, (which, in all likelihood was another disease entirely, most probably psoriasis) that had inherited evil overtones from the Hebrew tsaraath. Galen made references to a similar ailment, writing about the condition in what is now modern Germany.
Art, most notably biblical and historic depictions such as Rembrandt’s The Leper, gives a unique insight the social condition of the afflicted. Their prevalence in mediaeval European literature and art indicated the disease was widespread; indeed, one census cited at least 19,000 from as far south as Albania, to Sweden in the north. Skeletal examinations by Danish physical anthropologists suggest a high percentage of lepers in rural Denmark. Phillip IV of France kindly suggested that all those with leprosy be gathered and burnt alive until the disease was eradicated. Europe’s Catholic religious authorities declared the leprous legally dead, giving them free reign to appropriate the family’s valuables. The leper occupied an ambivalent place in the world of religious jurisprudence; they existed in a quasi-religious state, among the living but ritually diseased. Although religious texts of the era forbid incorporation of funeral liturgy, historical sociologist R I Moores excellent work on the subject, The Foundation of a Persecuting Society, maintains the ritual of separation was modeled on the ritual of the dead and required the cursed leper to stand in an open grave while being administered last rites. This kind of ritualistic isolation took place as far back as 13th century France with its Ceremony of Separation. The afflicted were given gloves, a bowl of bread and taken to a remote hole in the ground to live out the reminder of their life of exile.
If Kalaupapa had a royalty, Richard Marks would be king. Every write-up mentions him; he has won numerous honors, and met Gandhi, the Pope and Mother Teresa. He is the sheriff, historian and tour guide, having operated his wildly successful Damian Tours out of Kalaupapa settlement. The four-and-a-half hour tour is heartfelt and touching. His face pops up in photo books of the town. He was once energetic and globetrotting, but age has reached him. His once boundless energy is waning and he needs frequent rest. I tried to interview him but he distrusts journalists – they twist things around. He sat with me for 15 minutes before fading out. He was diagnosed with leprosy at 19 but had fled the Islands years before that, traveling the world as a merchant seaman. I wanted him to tell me his story, but he is storied out – he tells it every day in his tour. Now he just wants to rest. I took his tour and at the end he tripped over a cart at the tiny Kalaupapa airstrip. I felt embarrassed for him. He looked broken, old. The rebellious young man in the photos and interviews is no longer. The palor of death hangs over his head; he will be dead within two years.
I wander the town. It is Christmas Eve and feeble reminders pop in here and there – little Nativity scenes in the yard, Christmas lights, flyers for Mass and Holiday parties. I pick up a coconut, sniff it and roll it down the empty one-lane street like a bowling ball; a dog barks in the distance. I pass a Model T Ford abandoned in the side of the road, a huge tree bursting out of its hood. Some houses are ramshackle, others meticulously maintained. Although it is only afternoon, the town is dead silent. People stare at me through their windows and cats approach hoping I have food. I bend down to pet a stray and it hisses loudly and tries to claw me.
Kalaupapa is on the shore and a deserted beach is steps away from town. Walking along this beach gives the feeling of being on a deserted island. The waves are perfect and consistent enough to surf. Years ago, boats from Honolulu would bring lepers here and push them into the water with instructions to swim to shore. Many chose the other direction, swimming out to sea to their death. Walking along the beach, I almost step on a sunbathing monk seal. I step over it with it a Merry Christmas and continue in solitude.
There is one firetruck in Kalaupapa. It doesn’t work. When there is a fire, which happens from time to time, the broken vehicle is pushed or pulled by car. It worked perfectly around the block once. Then never again, Richard Marks said while leading a tour. The ambulances don’t fare much better. Shipped in from Johnston Island, an obscure island 717 WSW of Honolulu, the antiquated aid vehicles are in a constant state of disrepair. “Everytime sick, go to Honolulu, go to Honolulu,” says Father Joseph in his own unique way.
Sitting at a park bench near the shore I am approached by two men who have lived in the town for decades. They wont tell me their names; they don’t trust me. One has been here 45 years next month while his friend has been here about 60 years or so. “I came here in 41, right after Pearl Harbor. We were so close to the attack they moved us out here. At first we hated it, all us kids, but after two months you couldn’t get us out of here. We had horseback riding, fishing, hunting, and surfing. In Honolulu you was all cooped up. I came at 14 years old.” He was now an old man, his fingers on one hand gone. His hair was neatly kept and he too had a little chihuahua dog that kept him company. “I can’t see my grandkids,” he said, echoing an increasingly familiar line, “so I keep this dog.”
It is Christmas day. Father Joseph insists that I accompany him to the local hospital for services. That I am Jewish matters little: we are all children of one god, he tells me. It is a short affair with hymns and a brief prayer for peace on earth. Bernard Punikaii is here and next to him a woman named Olivia Brethia. Olivia has been Kalaupapa since 1937. Her intake photo shows a hauntingly beautiful girl with a defiant stare and Mediterranean features, an older, foxier Anne Frank. The photographer has made her cross her hands in front of her chest and an unknown hand is holding information under her chin, like a mug shot. Her book, Olivia: My Life of Exile recounts her life in the settlement.
I do not know these people but am familiar with the words they have written. They are activists, intellectuals, and authors. Bernard was featured heavily in a coffee table book about people with leprosy, Quest for Dignity: Personal Victories Over Leprosy and Hansen’s Disease. In it he talks about how the word leper makes him feel like he is being slapped in the face. You have a disease through no fault of your own and it seems like for the rest of your life you are thought of as a leper. All the efforts, all the work that one does towards eliminating the stigma and fear seems to be for naught when you hear these words.
In the book there is a photo of him as a child, freshly separated from his mother. The child is handsome with light blue eyes. This picture, he recounts, was taken within a month of my incarceration on Oahu at Kahili Hospital, also known as Mount Happy Home. I see upon this child’s face the pain he is enduring, the loneliness is so overwhelming, mama…
‘The separation,’ Bernard wrote, ‘was very difficult for my mother and myself. One last embrace and I was there with total strangers, six-and-a-half years old and I didn’t know anybody. I was kind of, I guess you would say, kind of tough, so during the day it was easy to forget because you have to go to school, you have to go to the doctors and get tests and everything. But at night, the reality sinks in and the loneliness is very, very strong.’
In spirit I am able to reach out to him, to comfort him and to reassure him that all is not lost. The pain will go away, I tell him. As I look at the photo of the six-year-old boy who was me, something happens. His pain coalesces with my spirit and that pain is no longer his alone. I want to tell him that the time will come when there will be laughter, joy and yes, dignity.
Although the minds that penned these words and wrote the books are still razor-sharp, the bodies are not. Bernard is wheelchair bound after a stroke, his health steadily receding. His caretaker has to show him which side of the fork to eat from. He recently lost the mother whom he loved deeply. Olivia, too, is showing her age. They are on their way out, the last generation of an inhumane tradition. This may be their last Christmas.
In a speech to the International Leprosy Congress in The Netherlands, he recounts an episode where he saw a little girl I recognized as having the beginnings of Hansen’s Disease. “I felt inadequate. I wanted to do something. I couldn’t communicate with her. I couldn’t tell her where to go and get help, which is what I really wanted to do. I wanted to say, Little girl, please go to this clinic for an examination. But I couldn’t. I’ve seen a lot of children with this disease. I was one myself and so were many of my friends. I felt badly that I couldn’t do anything. She was beautiful and with treatment, we all know that she would grow up to be a beautiful young woman, get married and not be institutionalized.”
In New Delhi, on route home from Thailand, Punikaii speaks of noticing this person just a few feet ahead of him. “He had this heavy blanket around him and his face was just exposed around the eyes, but I could see his hands and I noticed right off that he didn’t have eyebrows and his fingers were almost like mine.”
“I knew right away that he had Hansen’s disease. I looked into his eyes and knew he was ostracized and shunned wherever he went. I’m sure he recognized that he and I share the same disease, and yet here I was with this other guy and it was like we owned the world. We went where we pleased. We looked at each other for a few moments and then he was gone. But the contact had been made. Though from different parts of the world, the road we traveled was the same. We knew we were brothers.”
Fuesinas Bar is the main and only entertainment venue in Kalaupapa settlement. It is run by a frowning, morbidly obese Samoan woman who opens the bar when she wants to. I sat eating an ice cream sandwich and reading a magazine while she glared at me. It was just us in the room; I disliked her immediately.
A frail old woman enters with her beautiful granddaughter and a caretaker adorned with Kalaupapa themed tattoos. They began to play cards and drink beer. Grandmother bore the scars leprosy inflicts: she had no fingers and drank her beer by holding the beer bottle precariously between her palms. Her upper lip was lost long ago. One beer easily turned into two and three and four, and other than her granddaughter and I arguing about Noam Chomsky, the hours passed without notice. I sit watching them, amazed at the physical variation in the human body. In two generations a family can go from frail, blind disfigured to tall and strong with perfect eyesight, firm breasts and long legs.
Soon the bar closes and everyone must go home. It is only eight in the evening but it might as well be 4 a.m. Not a single person is on the street, not a house light is on. There are no streetlights and it is pitch black. The only sign of life is the meowing of hundreds of cats. From the bushes, dozens of glowing eyes watch me as I walk.
I have had enough of this twilight zone. I resolve to leave the very next day and I never wish to see this place again. I have witnessed crippled grandmothers, feral cats, crying priests and fields of death. Although the windswept plateaux, the rugged shore break and the sheer sea cliffs are beautiful, they are also a prison. The winds, once cooling and refreshing, now sound too much like the howls of condemned souls, weeping about mans ignorance and cruelty. I am not wanted here, a trespassing intruder with a camera and notebook.
I can leave. I have the legs, the mind, the energy and the opportunity to simply pack my shit and walk up the trail. I can go back into my world and begin my life anew; many before me never had that choice. I make my way up the pali, thankful for my lot in life. Many are not so fortunate. As Stevenson put it, there are Molokais all over the world.