1996 - The Island of the Colorblind

by Oliver Sacks

  We set off again, to return to Umatac; John had more patients he wanted me to meet. He loved showing me patients, he said, taking me on house calls with him – I also loved this, seeing his energy, his neurological skill, and, even more, the delicate feeling, the caring, he showed for his patients. It took me back to my own growing up, when I would go out on house calls with my father, a general practitioner – I had always been fascinated by his technical skills, his elicitation of subtle symptoms and signs, his knack for making diagnoses, but also by the warm feeling which manifestly flowed between him and his patients. It was similar, I felt, with John; he too is a sort of GP – a neurological GP, an island GP – for his hundreds of patients with lytico-bodig. He is not just a physician to a group of individuals, but physician to a whole community – the community of the afflicted Chamorros and their relatives who live in Umatac, Me-rizo, Yona, Talofofo, Agat, Dededo, in the nineteen villages which are scattered over Guam.

  Juan, another of John’s patients, has a very unusual form of the disease, John had told me. ‘Not like ALS, not like parkinsonism, not like any of the typical forms of lytico-bodig. What he does have is a peculiar tremor which I have never seen before in lytico-bodig – but I am sure this is the beginning of the disease in him.’ Juan was fifty-eight, very powerfully built, deeply sunburned, looked much younger than his years. His own symptoms had come on a couple of years ago, and he noticed them first when he was writing a letter. The act of writing brought on a shaking, and within a year it was no longer possible to write, at least with his right hand. But he had no other symptoms at all.

  I examined him and was puzzled by the tremor. It looked nothing like the resting (‘pill-rolling’) tremor one usually sees in parkinsonism, for it came on with action or intention (which suppress the resting tremor). Nor did it resemble the ‘intention tremor’ which one may see (with incoordination and other cerebellar signs) if there is damage in the cerebellum or its connections. It resembled instead what neurologists gaily call essential or benign tremor. ‘Essential’ because it seems to arise without any demonstrable lesion in the brain, and ‘benign’ because it is usually self-limiting, responds well to medication, and does not interfere with life too much.

  Usually this is the case. But there are a certain number of people who go on from such a ‘benign’ tremor to develop fullblown parkinsonism or other neurodegenerative disease. I thought of one patient of mine, an elderly woman in New York, who, when she developed such a tremor, in her seventies, was severely incommoded by it. She burst into tremor whatever she did, and could only prevent this by sitting stock-still. ‘They call it benign,’ she said, ‘what’s so benign about it?’ In her case, it was intensely malignant, not only in the way it interfered with her life, but in the fact that it proved to be the first symptom of a rare corticobasal degeneration, going on to rigidity, spasticity, and dementia, and, within two years, death.

  There was no reason to suppose that Juan had anything like this. What he probably had, John felt – and I trusted his intuition – was an extremely mild form of bodig, so mild that he would probably be able to work and live independently for the rest of his life. Progressive and disabling as the lytico-bodig usually is, there are some, like Juan, who are only touched by it lightly, and who, after a sometimes rapid development of symptoms over a year or two, seem to show little further advance of the disease (though I have recently heard from John that Juan has developed some parkinsonian rigidity now).57

  Had I let him, John would have driven straight on to the next patient, and the next. He was eager to show me everything in the few days I would be on Guam, and his energy and enthusiasm seemed to know no limits. But I had had enough for one day, and needed a break, needed a swim. ‘Yes, you’re right, Oliver,’ said John. ‘Let’s take a break – let’s go snorkelling with Alma!’

  Alma van der Velde has a charming, sloping house, covered by vines, perhaps held together by them, surrounded by ferns and cycads, right by the water’s edge in Merizo. She herself is a water creature, who spends half her days swimming in the reef – badly arthritic, she moves painfully on land, but she is a graceful, strong, and tireless swimmer. She came to Micronesia as a young woman, fell in love with it, has never left. She has swum among these reefs daily for thirty years; she knows where to find the best chitons, cowries, and top shells, she knows the caves where octopuses hide, the underhangs of the reef where the rarest corals are found. When she is not swimming, she sits on her verandah, painting the sea, the clouds, the rocky out-croppings by the reef – or reading, or writing, completely self-sufficient. She and John are close friends, so close they hardly need to talk when they are together; they sit, they watch the waves thundering on the reef, and John is able, briefly, to forget the lytico-bodig.

  Alma greeted us, and smiled when she saw I had brought my own fins and snorkel. John wanted to stay on the verandah and read; Alma and I would go to the reef together. She gave me a stick to help me walk over the shallow coral shelf with its razor-sharp branches, and then led the way – following a path which I could not have discerned, but which she clearly knew intimately, out to the clear waters beyond. As soon as the water was more than a couple of feet deep, Alma dived in, and, following her, I dived in too.

  We moved past great coral canyons, with their endless forms and colors and their gnarled branches – some shaped like mushrooms, some like trees, being nibbled at by tetrodons and file-fish. Clouds of tiny zebra fish and fish of an iridescent blue swam through them, and around me, between my arms, between my legs, unstartled by my movements.

  We swam through shoals of wrasse and parrot fish and damsels, and saw turkey fish, with rusty feather fans, hovering beneath us. I reached out my hand to touch one as it hovered, but Alma shook her head violently (later she told me the ‘feathers’ were quite poisonous to touch). We saw flatworms waving like tiny scarves in the water and plump polychaetes with iridescent bristles. Large starfish, startlingly blue, crawled slowly on the bottom, and spiny sea urchins made me glad my feet were protected by fins.

  Another few yards and we were suddenly in a deep channel, the bottom forty feet below us, but the water so clear and transparent that we could see every detail as if it were at arm’s length. Alma made some gesture I could not understand as we swam in this channel; and then we turned back, to the shallower waters of the reef. I saw hundreds of sea cucumbers, some nearly a yard long, making their cylindrical way slowly across the ocean floor, and found these enchanting – but Alma, to my surprise, made a grimace, shook her head.

  ‘They’re bad news,’ she said, after we had come in and showered and were eating fresh tuna and a salad with John on the porch. ‘Bottom feeders! They go with pollution – you saw how pale the reef was today.’ Indeed, the corals were varied and beautiful, but not quite as brilliant as I had hoped, not as brilliant as they had been when I snorkelled off Pohnpei. ‘Each year it gets paler,’ Alma continued, ‘and the sea cucumbers multiply. Unless they do something, it’ll be the end of the reef.’38

  ‘Why did you gesture when we were in the channel?’ I asked.

  ‘That means it’s a shark channel – that is their highway. They have their own schedules and times, times I would never dream of going near it. But it was a safe time today.’

  We decided to rest and read for a while, in companionable silence on the verandah. Wandering inside to Alma’s comfortable living room, I spotted a large book on her shelf entitled The Useful Plants of the Island of Guam, by W.E. Safford. I pulled it out – gingerly, as it was starting to fall apart. I had thought, from the title, that it was going to be a narrow, rather technical book on rice and yams, though I hoped it would have some interesting drawings of cycads as well. But its title was deceptively modest, for it seemed to contain, in its four hundred densely packed pages, a detailed account not only of the plants, the animals, the geology of Guam, but a deeply sympathetic account of Chamorro life and culture, from their foods, their crafts, their boats, their houses, to their languag
e, their myths and rituals, their philosophical and religious beliefs.

  Safford quoted detailed accounts of the island and its people from various explorers – Pigafetta, Magellan’s historian, writing in 1521; Legazpi in 1565; Garcia in 1683; and half a dozen others.59 These all concurred in portraying the Chamorros as exceptionally vigorous, healthy, and long-lived. In the first year of the Spanish mission, Garcia recorded, there were more than 120 centenarians baptized – a longevity he ascribed to the ruggedness of their constitutions, the naturalness of their food, and the absence of vice or worries. All of the Chamorros, noted Legazpi, were excellent swimmers and could catch fish in their bare hands; indeed, he remarked, they sometimes seemed to him ‘more like fish than human beings.’ The Chamorros were skilled as well in navigation and agriculture, maintained an active trade with other islands, and had a vital society and culture. Romantic exaggeration is not absent in these early accounts, which sometimes seem to portray Guam as an earthly paradise; but there is no doubt that the island was able to support a very large community – the estimates all fall between 60,000 and 100,000 – in conditions of cultural and ecological stability.

  Though there were occasional visitors in the century and a half that followed Magellan’s landing, there was to be no massive change until the arrival of Spanish missionaries in 1668, in a concerted effort to Christianize the population. Resistance to this – to forced baptism, in the first place – led to savage retaliation, in which whole villages would be punished for the act of a single man, and from this to a horrifying war of extermination.

  On top of this, there now came a series of epidemics introduced by the colonists – above all smallpox, measles, and tuberculosis, with leprosy as a special, slowly smoldering gift.60 And in addition to actual extermination and disease, there were the moral effects of a forced colonization and Christianization – the attempted soul murder, in effect, of an entire culture.

  This…weighed so heavily upon phem]…that some even sacrified their lives in despair; and some women either purposely sterilized themselves or cast into the waters their new-born infants, believing them happy to die thus early, saved from the toils of a life gloomy, painful, and miserable…they judge that subjection is the worst misery in the world.

  By 1710, there were virtually no Chamorro men left on Guam, and only about a thousand women and children remained. In the space of forty years, ninety-nine percent of the population had been wiped out. Now that the resistance was over, the missionaries sought to help the all-but-exterminated Chamorros to survive – to survive, that is, on their own, Christian and Western, terms – to adopt clothing, to learn the catechism, to give up their own myths and gods and habits. As time passed, new generations were increasingly hybridized, as mestizo children were born to women who were married to, or raped by, the soldiers who had come to subdue their nation. Antoine-Alfred Marche, who travelled the Marianas between 1887 and 1889, felt there were no longer any pure-blooded Chamorros in Guam – or at most a few families on the neighboring island of Rota, where they had fled two centuries before. Their bold seafaring skills, once renowned throughout the Pacific, were lost. The Chamorro language became creolized, admixed with much Spanish.

  As the nineteenth century progressed, Guam, once a prized Spanish colony on the galleon route, fell into deepening neglect and oblivion; Spain herself was in decline, had problems at home, other interests, and all but forgot her colonies in the western Pacific. This period, for the Chamorros, was a mixed one: if they were less persecuted, less actively under the heel of their conquerors, their land, their diet, their economy, had become more and more impoverished. Trade and shipping continued to decline, and the island became a distant backwater, whose governors had neither the money nor the influence to change things.

  The final sign of this decline was the farcical way in which Spanish rule was officially ended, by a single American gunboat, the USS Charleston, in 1898. There had been no ships for two months, and when the Charleston and its three companion vessels appeared off Guam, a pleasurable excitement swept the island. What news, what novelties, the ships might bring! When the Charleston fired, Juan Marina, the governor, was pleased – this must be, he assumed, a formal salute. He was stunned to discover that it was not a greeting, but war – he had no idea that there was a war going on between America and Spain – and he now found himself led in chains aboard the Charleston, a prisoner of war. Thus ended three centuries of Spanish rule.

  It was at this point that Safford himself entered the history of Guam. He was a navy lieutenant at the time, an aide to Captain Richard Leary, the first American governor – but Leary, for reasons of his own, elected not to leave his ship, which was moored in the harbor, and sent Safford to act in his stead. Safford soon ‘gained a working knowledge of the Chamorro language and customs, and his respect for the people, his courtesy, his curiosity, made him an essential bridgehead between the islanders and their new masters.61 The new American administration, though not quite as out of touch as the Spanish one it replaced, did not institute too many changes in Guam. It did, however, open schools and English classes – the first of which were conducted by Safford in 1899 – and greatly improved medical observation and care. The first medical reports of ‘hereditary paralysis’ and its unusual incidence date from 1900; the more specific term, ‘ALS,’ was used as early as 1904.

  Life in Guam remained much the same as it had been for the past two centuries. The population had gradually increased since the genocide of 1670-1700; a census in 1901 found 9,676 people, of whom all but forty-six considered themselves to be Chamorros. Nearly 7,000 of them lived in the capital of Agana or its adjaacent villages. Roads were very poor, and the villages in the south, like Umatac, were almost inaccessible in the rainy parts of the year, and could only reliably be reached by sea.

  Nevertheless, Guam was deemed important from a military point of view, because of its size and crucial position in the Pacific. During the First World War, Japan was one of America’s allies, and Guam was not drawn into the conflict. But there was great tension on December 8, 1941, as Guam got news of the attack on Pearl Harbor; within hours, it too found itself under attack as Mitsubishis from Saipan, just a hundred miles to the north, suddenly appeared in the sky above Agana, spitting machine-gun fire. Two days later, Japanese infantry, which had been massing on Rota, landed, and Guam could offer little resistance.

  The Japanese occupation was a time of great cruelty and hardship, reminiscent of the conquistadores. Many Chamorros were killed, many were tortured or enslaved for war work, and others fled their villages and farms to live out the occupation, as best they could, in the hills and jungle. Families and villages were broken up, fields and food supplies were taken over, and famine ensued. Cycad seeds had been an important part of their diet for two hundred years at least; now they became a near-exclusive diet for some. Many more Chamorros were brutally murdered near the end of the war, especially when it became clear that the Japanese days were numbered, and that the island would soon be ‘liberated’ by the Americans. The Chamorros had suffered appallingly during the war, and welcomed the American soldiers, when they came, with jubilation.

  The real Americanization of Guam came after 1945. Agana, which had housed half of Guam’s population before the war, had been levelled in the recapture of the island and had to be totally rebuilt; the rebuilding transformed it from a small town of low, traditional houses to an American city with concrete roads, gas stations, supermarkets, and ever-higher high-rise apartments. There was massive immigration, mostly of servicemen and their dependents, and the population of the island swelled from its prewar 22,000 to more than 100,000.

  Guam remained closed to visitors and immigrants, under military restriction, until 1960. The entire north and north-eastern portions, which contained the best beaches on the island, and the beautiful and ancient village of Sumay (taken over by the Japanese in 1941, and finally flattened by the Americans in 1944), were appropriated for new military bases, and closed
even to the Chamorros who had once lived there. Since the 1960s, huge numbers of tourists and immigrants have arrived – Filipino workers by the tens of thousands, and Japanese tourists by the million, requiring ever vaster golf courses and luxury hotels.

  The traditional Chamorro ways of life are dwindling and vanishing, receding to pockets in the remotest southern villages, like Umatac.62

  John normally goes on his rounds with Phil Roberto, a young Chamorro man who has had some medical training, and who acts also as his interpreter and assistant. Like Greg Dever in Pohnpei, John feels strongly that Micronesia has been far too dominated by America and American doctors, imposing their own attitudes and values, and that it is crucial to train indigenous people – doctors, nurses, paramedics, technicians – to have an autonomous health-care system. John hopes that Phil will succeed him, completing his medical degree and taking over his practice when John retires, for Phil, as a Chamorro himself, will be an integral part of the community in a way that John can never fully be.

  Over the years there has been increasing resentment among the Chamorros in regard to Western doctors. The Chamorros have given their stories, their time, their blood, and finally their brains – often feeling that they themselves are no more than specimens or subjects, and that the doctors who visit and test them are not concerned with them. ‘For people to admit that their family has this disease is a big step,’ Phil said. ‘And then to let medical people come into their homes is another big step. Yet in terms of treatment or care, health care, home care, they’re really not given enough assistance. Visiting doctors come and go, with their forms and research protocols, but they don’t know the people. John and I go into people’s houses regularly, and we come to know the families, their histories, and how they’ve come to this point in their lives. John has known many of his patients for ten or twelve years. We have videotaped hundreds of hours of interviews with patients. They have come to trust us, and are more open in terms of calling for assistance – saying, ‘So-and-so is looking rather pale, what should I do?’ They know we are here for them.