The most common symptom of the disease was mild and not terribly remarkable: a white patch of skin that seemed to have lost sensation, then skin drying, thickening, cracking. Some people with this condition healed spontaneously, progressing no further. Others went on to severe forms: the neural or more benign form of leprosy, where germs accumulated in the nerves, causing loss of sensation from hands, feet, the entire torso. Though patients lived for many years with this neural form, paralysis and atrophy of tissue occurred, loss of fingers, toes, sometimes whole limbs.
The more acute, lepromatous, was marked by formation of hard nodular swellings teeming with bacteria in the skin, in the mucous membranes of the nose, throat, eyes, eventually internal organs. As bacteria invaded various tissues, skin lesions appeared. First tiny nerve endings were affected, then larger nerves, starting a hideous chain of events that led to crippling and deformity. When nerves supplying power to muscles were damaged, muscles themselves withered, became paralyzed. With sensory nerves damaged, the result was loss of sensation of the skin.
The simplest acts—walking, lifting a fork, using a knife—became lethal. Deep lacerations resulted when hands and feet lost the ability to distinguish mere touch from acute pain. In an effort to “feel,” victims exerted too much pressure on their limbs, breaking bones, repeating the injury over and over, causing a slow diminishing of bone and its replacement with scar tissue. Huge blisters grew from burns that weren’t felt. When other bacteria entered broken blisters, it caused infection in tissue and bones. Hands, fingers, feet and toes became severely crippled. Leprosy didn’t cause gangrene, as was thought, fingers and toes didn’t simply drop off. But, without the sensation of pain, appendages wore away by constant damage. Bones were gradually broken down and absorbed until limbs were left with only short stumps where fingers and toes should be.
Invasion of the mucous membranes often led to destruction of the cartilage of the nose, resulting in its deformity. People appeared to lose their nose as the bone was absorbed into adjacent tissues. As bacilli invaded the tissue of the face, causing scarring, disfigurement, there was a terrible thickening of skin, a distinct furrowing, that medical experts called leonine facies, the look of a lion. When bacilli invaded tissues near the eyes, eyelids wouldn’t close. The eyes became infected, causing blindness. Because the blind relied so much on their hands, without sensation there, they experienced a complete cut-offness from the world, total isolation. They were even cut off from themselves.
Fingers turned to claws, hands turned to clubs. Feet became mere stumps. Blindness. Kidney and heart disease. Utter hopelessness of knowing the deformities couldn’t be reversed. At Kalaupapa, life became a prison within a prison. Strict confinement, isolation, first from one’s friends and blood-kin, then from one’s physical surroundings. They were to the outside world, The Untouchables. Who could blame the victims who prayed unceasingly for death?
As his sickness slowly escalated, Duke offered himself for newer injections, more radical experiments. At night he crept into shabby wooden labs, staring at rats and guinea pigs with patients’ names attached. One night, in a cage, he saw a guinea pig tagged “Duke.” Eyeless, bald, completely ulcerated, it had clawed its stomach out. Undaunted, Duke kept volunteering. When his lesions seemed to go into remission, he resurrected his belief in spontaneous healing—a miracle that took place in one out of a hundred people—and subjected himself to “snips.”
Those who hoped to be released had six skin-scrapings each year, searching for still-active leprosy bacillus, then a biopsy and nose scraping. The process took twelve months, each snipping submitted to the Board of Health. It was heartbreaking; patients would be negative on five snips, then fail on the sixth. Failure meant another year at Kalaupapa, or worse, a lifetime. Some people turned to ‘ōkolehao, or drugs. Some quietly walked into the sea.
A man who had snipped successfully for a year, wanted to go home to his children. In order to go, he had to submit to being sterilized.
“Doc say me ‘No sterilize, you got stay here. Want go home, need sterilize.’ I say, ‘You want my balls? You got ‘em!’ Now, I goin’ Honolulu, see my keeds.” He was back in six days. His children looked at his twisted, “noseless” face and ran away.
Even women who had snipped successfully were voluntarily sterilized in order to go home. Most came back. “Folks stare my face like see one nightmare. Make me want to die.”
Yet, they found beauty among themselves, and love. Children were born, and hidden. Laws said they had to be taken, that children were the most susceptible to leprosy. But sometimes, late at night in patients’ cottages, everyone stealthy and quiet so administrators wouldn’t hear, a secret birth took place. Word spread from room to room, house to house. The hospitals emptied. Patients came hobbling from across the settlement to see the newborn, to touch and hold, even for a moment. Lines were long, people fell asleep standing, so starved for children even the blind were brought to smell the infant, to hear its breathing. Those with sight gave the sightless a running description of every movement, every feature of the child.
“Button nose, like it mama! Big ears like da dad! Ohhh, full head of hair! You can feel it fingernails? Try feel! And feet, big feet, neh? Now it yawning like a cat, and kicking, kicking like one mule! Oh, funny! It wink! Yeah, wink! Like gonna’ be one flirt . . .”
Sometimes infants weren’t discovered for several days, giving the mother “tragic time,” time to become too attached. When the doctors came, and nurses, taking the child from her, the howling echoed across the peninsula. Newborns were allowed to live inside Kalaupapa nursery for twelve months, kept behind thick glass so parents could see them but never touch them again. After one year they were taken from Kalaupapa, hānai by family or “issued out” to strangers by the Board of Health.
Then, there were the older ones already afflicted and broken. One day Duke watched a dozen leprous children sitting with their broken faces upturned, looking like lobsters with applicator sticks protruding from each nostril. They were being forced to “nose trip.” Leprosy bacteria, found in abundance in the discharge from the nose, was needed for research. Adults wouldn’t sit still, some had noses too far broken down. Children had abundant mucus, and needed their passages unblocked, but when they saw the applicator sticks, they ran. The penalty was severe punishment, no food, days locked in a room alone. And so, the children submitted.
Instruments forced open the nose blocked with mucus. Opium-dipped sticks softened up the tissue, allowed the stick to penetrate all the way up the nostril. After a while, doctors withdrew the applicator sticks from deep inside the nasal passages, attached to which came mucus, tissue, blood. Children fainted with pain. Every day they fainted, each and each, every day, year after year. Until one day, there was no pain, only craving. Little addicts, noses broken down, maturing into adults whose cravings grew. Needles, morphine, heroin; it wasn’t hard to smuggle in. For a price, boats would bring anything to Kalaupapa, dump it on the dock.
Duke favored a bright, fourteen-year-old Hawaiian-Portuguese. He came to love him like a son. One day the boy’s body was found just inside the jungle, a rubber hose wrapped round his arm, a needle jutting out. They had “nose-tripped” him since he was eight. Duke rushed into the hospital, dragged a white-coated doctor outside and threw him to the ground. His big hands slowly closed down his windpipe, the man’s face turned an awful blue. Then a sailor unloading a supply boat moved up from the dock. He took Duke aside and stood apart from him and spoke a name. Pono. Their conversation was brief, mostly in code, and yet to Duke it seemed a conversation of a hundred years, time drawn out, expanded immeasurably by all he could not say.
Though he was still monumental, in two years, he’d lost thirty pounds, resignation in his muscles, a lessening. Stomach ulcers plagued him from so much medication. He’d lost sensation in one leg and arm. His toes were broken down, half gone. There were new lesions on his body, and now a visible slow thickening in his face, the lion look. He had be
gun to understand this desolate peninsula was his final place. He tore a paper from a notepad, wrote something hastily, gave it to the sailor. Within forty-eight hours, the note was passed from the sailor to the haole unionizer working Pono’s district on the Big Island.
In understanding he would never leave there, that he would only leave there for the Afterlife, Duke began reconstructing Kalaupapa, planting gardens, weeding graves, clearing walkpaths up the mountains. In physically rejuvenating the land, he renewed something spiritual and intellectual within himself. Carefully exploring its jungles and beaches as if for the first time—a press of hau bark to his nose, his cheek against damp soil, his foot plunged deep in palpitating sand—he saw the land and sea surrounding him not as a natural barrier, a prison, but as a creature timelessly alive.
Every detail became vivid: the earth’s skin sloughing off in trades, green motes of rootless plankton charioting a wave, the heartcalm of cool rain on sunburned wrists, gaspchill of sudden shade, the liquid silk of milk of coconut, the saltfish taste of seaweed rinsing out the milk, the vegetable ease of rot and life, and green, the green of Polynesia. In everything ordinary, he saw the extraordinary. This land, shunned by the world, became a thing that fed his senses. Duke entered it wholeheartedly in order to survive.
For months patients saw night-torches in the jungles, plantation strikers fleeing armed guards. Fugitives appeared beneath their cottages, small skeletal Japanese and Filipinos, running for their lives. Lepers hid them, fed them, became runners for them, carrying messages back to their friends “Topside,” up over the mountains, where healthy people lived, where plantation owners sucked out the lives of laborers.
“You lepers lucky,” a fugitive said. “You devil to look at, but only got to look each ot’er. You eat till full, sleep till wake. No work. All you gotta do is die.”
The most hideously deformed patients were chosen as runners, posing as boar hunters. Armed guards coming upon them in the jungle, cocked their rifles, then backed off, disgusted. For weeks the jungle rang with gunshots. Union men had heavily infiltrated camps, organizing massive walkouts on plantations. Radios broadcast that all the islands were in the throes of strikes and martial law. Armed guards hired by plantation owners were replaced by hired killers, bounty hunters. People were routed from bed and shot in their nightclothes. People disappeared.
One day a group of runners came down from the mountains carrying a wild boar slung across a pole. Approaching Duke, they laughed softly, conspiratorially, then parted ranks. And she came drifting to him through a crowd of human others. He saw so many things at once, that she had suffered, that there were things she couldn’t speak of, ever. She had a wounded quality, yet seemed more beautiful, her body less plump, adding to her height. And something else, a fearless air, devoid of faith, restraint; she was a woman who had not yielded.
In an instant she saw what Duke had become. What Ma‘i Pākē had done to him, and how the future would compound it. Yet in that same instant, she saw he was for her forever a feeling and a time, the hour when people say, “The crisis has passed, now we can press on to fulfillment,” or, “You will not remember pain.” He was the hour after which all things are healed and distant. He was her recovery, her continuance, her reason for recurrence and renewal. And he would be the source of her eternal grief, what could be, or might have been.
She saw how time had already estranged them into memory. He would be the background for all her thoughts and recollections, her griefs, her pathologies. He would be the phantom that passes through each life—a very moral, loving man, a brilliant, noble woman, or just someone kind who could forgive—the one we cannot hold who leaves, leaving deadly traces. Duke stumbled to her, crying out, even as she folded like a paper doll. He tried to lift her to her feet, but Pono hugged his legs, pressed her face against his knees, and wept. People turned, leaving them alone.
There would be a dawn, and chimes. Out in the world, there would be another day, the repetition of gestures, a confused sense in the hearts of men of not being able to understand their lives. Here, there was only the present, utter, immaculate. An old grass hut fronting the sea, built for honeymooners, and all around sunsetdusk in parrot plumage colors. They lay side by side, holding on, and she mourned for what was lost in her, what she could not tell. And what she could, she told, how the world had dwindled down to one thing: the horrifying actuality of his absence. The pointlessness of life without him. Jungle-running, and Holo’s birth, and finding the father in the daughter—intelligence, intuition—which tapped some wild energy of hope that he was still alive. And that hope resurrecting in Pono devotion, desire. To him, for him. All she could articulate she said. That all her life he would be for her the only one. He was rare, full of grace. She would break the rules for him.
And he was stunned that she could love so deeply someone so awfully afflicted, that she had come, was flesh and blood and here, not the nightly fantasy lying in wait, moody watcher as he tortured the charnel house of his body, pestering, stroking himself, wanting his hand to be her hand, the fantasy dissolving before he even came, alone, so all alone. Then, Duke pulled her to him O the wealth of her, twining her thick black hair round his hands like ropes, kissing her face, her eyes with infinite tenderness. They drifted, turned, drifted like youths, a sense of bodies tensed, poised for love, brains holding back in pitiful decorum.
She could feel desire, what she wanted to do, to have, ticking within like little bombs. And Duke could feel the darting throbs, a hawk’s hunger for her, so strong he put aside his shame, his sickness, how he must appear. Yet, there was hesitation. They had grown so used to grief it was part of them; without it, liberated from it, they felt naked, alien. Now there had to be a time of suspension—a jostling, almost a spasm, of cells, a change of rhythms in the bloodflow—as grief dissolved and joy moved in to take its place. They waited, trembled, sighed, letting instinct take over, the soft explosion when they would be past thinking.
He wept, embraced her, watching her skin light up all over, a shimmering down in her roots. She couldn’t move, lay still, like some great pod about to burst. There was a sense of barriers breaking down, of skin parting, leaving visible raw nerves, mouths gaping, ready for sensation, and juices flowing, intermingling. Then his lips grazed over her, her lips and throat and breasts; he brushed hair from her eyes so she could see him, his lovely, dark penis poised beside her. In that moment before he entered her, they faced each other in a tense spasm, silent intake of breath, a requiem for all the loneliness, the longing.
Then she rose to meet him joining him singing out as they moved together and she held on to him and he was everything her son brother mentor an old man weeping at her grave light of a candle behind her chill of dusk at the door grass hut palpitating round them his big hands supporting her she bucked and bucking shook it all out of her that other woman full of knives and death and sobs and even then nothing about him escaped her not his smell earthy salty threatening sourness of medication in his veins not roughness of his scars or sordid scabbed lesions not the feel of shrinking muscles in his shoulders not even faintest down rising on the edge of his brown broken ear as he groaned rushed harder into her and she met him stayed with him as he called out her name trembling turbulent and she lapped his sores lapped his saliva with her tongue felt it running down her throat and she felt too a skidding loss of balance decorum breaking down her past receding acts committed in order to survive to arrive at this place this point this man inside her thudding against his thudding egos laid aside a pure and violent soldering.
In the morning, they heard soft footsteps, smelled gardenia-smell of fresh split pomelo. Outside the door a small feast had been left on ti leaves covered with lau’ae fern: steamed mahimahi, fresh dark ‘ōpae, warm laulau, riceballs and poi, and sticky buns, coffee, a pyramid of fruit. They pulled the leaves of food indoors, and left the door flung wide. And lying there like people who had found a way to sleep, they dreamed and dozed and surged into each other, dozed
again, waking and eating dreamily, one hand always laid upon each other. Slowly, as if re-learning speech, words came again, Pono speaking so carefully everything she said seemed wise.
She talked of the terrible living conditions on plantations—open sewers, rats, scorpions, laborers having to steal to feed their children decently, tuberculosis wiping out small populations of the young, infections from cane cuts that led to gangrene. Filth, murder, suicide.
“They say plantation owners have accomplished the miracle of teaching immigrants how to rest without sleep, eat without food, live without life. I began helping organize strikes. Much good is happening thanks to unionizers. But I was endangering my life, and Holo’s. When I heard you were alive, I ran . . .”
Duke spoke sadly of his life, of friends lost. “Quick friends. Here no one has much time.”
“How you have suffered!”
“As long as I suffer,” he said, “I know I’m still alive.”
He told her how lepers volunteered as runners for the strikers and union men, how he suspected it would get worse, planters fighting unions, more workers dying.
He paused, then cupped her face with his hands. “Now, tell me about our daughter.”
She showed him wrinkled photographs, the child round, dark, beautiful, eyes big and grave like Duke’s. Pono described her mannerisms, her amazing intuition, the quiet withdrawals when she sat and stared. And as she talked, she understood how much she loved the child because she was already old, she had already seen too much.
“A Japanese taro farmer and his wife took us in a few miles south of the plantation. We lived with them for weeks. When Holo was fat and strong again, I stowed away with her on a steamer from the Big Island bound for Moloka‘i.”
She laughed because the boat had docked on the wrong side of the island, “Topside,” over the mountains from Kalaupapa where there were real towns and healthy people. She and the child had hid again until she could work her way toward Kalaupapa.
Shark Dialogues Page 17