1996 - The Island of the Colorblind (16 page)

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.
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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 1960
s
, 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.
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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.

‘We are the ones who go back to their homes weeks after the researchers have been here and taken their samples back to the States. The patients ask us, ‘So what happened to those tests performed on us?’ But we have no answers for them, because they’re not our tests.’

The next morning John and Phil picked me up early. ‘You saw a little of the parkinsonism and dementia – the bodig – yesterday,’ he said. ‘Kurland felt this form of the disease was replacing ALS in the 1970
s
 – but you must not imagine the ALS is extinct. I have lytico patients I have been following for years, and new cases as well – we’ll see some today.’ He paused, and added, ‘There is something unbearable about ALS; I’m sure you have felt it, Oliver – every neurologist does. To see the strength go and the muscles wasting, people unable to move their mouths to speak, people who choke to death because they can’t swallow…to see all this and feel you can do nothing, absolutely nothing, to help them. Sometimes it seems especially horrible because their minds remain absolutely clear until the end – they know what is happening to them.’

We were on our way to see Tomasa, whom John has known ever since he came to Guam. She had already had lytico for fifteen years when he met her; it has advanced steadily since, paralyzing not only her limbs but the muscles of breathing, speech, and swallowing. She is now near the end, but has continued to bear it with fortitude, to tolerate a nasogastric tube, frequent choking and aspiration, total dependence, with a calm, unfright-ened fatalism. Indeed a fatality hangs over her entire family – her father suffered from lytico, as did two of her sisters, while two of her brothers have parkinsonism and dementia. Out of eight children in her generation, five have been afflicted by the lytico-bodig.

When we entered her room, Tomasa looked wasted, paralyzed, but alert. With a cheery ‘Hello, Tomasa, how is everything today?’ John walked over to the couch where she was lying. He leaned over and touched her shoulder, and she followed his hand with her eyes, which were bright and attentive. She followed everything, with an occasional (perhaps sometimes reflexive, pseudobulbar) smile, and a slight groaning as she exhaled. She was dying in full consciousness, after twenty-five years of an implacable disease, in a bright sunlit room. John introduced me to Tomasa and to her daugher, Angie, who was with her. When I asked her date of birth, Tomasa produced a string of (to me) unintelligible sounds, but her daughter interpreted this as April 12, 1933. Tomasa could open her mouth on request, and put out her tongue. It was fearfully wasted, fissured, fasciculating, like a bag of worms. She made another unintelligible sound. ‘She wants me to bring you and Dr. Steele something to drink,’ Angie said. Tomasa’s manners have not deserted her, even at this point. ‘She has taught countless people about the disease on Guam,’ said John; Tomasa smiled. ‘Don’t worry, Tomasa – Angie will not get the lytico. No one in the younger generation gets this, thank God,’ he added softly.

Family, friends, neighbors, come in at all hours, read the papers to her, tell her the news, give her all the local gossip. At Christmas, the Christmas tree is put by her couch; if there are local fiestas or picnics, people gather in her room. She may scarcely be able to move or speak, but she is still, in their eyes, a total person, still part of the family and community. She will remain at home, in the bosom of her family and community, in total consciousness and dignity and personhood, up to the day of her death, a death which cannot, now, be too far off.

Seeing Tomasa surrounded by her large family made me think of a 1602 description of the Chamorros by an early missionary, Fray Juan Pobre, which I had seen while browsing in John’s office:

They are naturally very compassionate people… The day when the master of the house, or his wife, or a child falls ill, all the relatives in the village will take dinner and supper to them, which will be prepared from the best food they have in the house. This is continued until the patient dies or recovers.

This acceptance of the sick person
as
a person, a living part of the community, extends to those with chronic and incurable illness, who may, like Tomasa, have years of invalidism. I thought of my own patients with advanced ALS in New York, all in hospitals or nursing homes, with nasogastric tubes, suction apparatus, sometimes respirators, every sort of technical support – but very much alone, deliberately or unconsciously avoided by their relatives, who cannot bear to see them in this state, and almost prefer to think of them (as the hospital does) not as human beings, but as terminal medical cases on full ‘life support,’ getting the best of modern medical care. Such patients are often avoided by doctors too, written, even by them, out of the book of life. But John has stayed close to Tomasa, and will be with her, with the family, the day she finally dies.

From Tomasa’s house, we drove north across the island, up through the cycad-dappled hills, and past placid Lake Fena, Guam’s only reservoir of fresh water.
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Everything looked very dry on the plateau; at one point, John pointed out the charred trees and large areas of blackened ground which were the legacy of a great forest fire the previous summer. And yet here, even in these blackened areas, were new shoots of green – shoots which came from the stumps of cycads.

Dededo is a more modern village, now the largest on Guam after Agana. It has a somewhat suburban look, with each house set at a little distance from the others, so there is more sense of ‘privacy’ (though this seems to be more a Western concept than a Chamorro one). It is in one of these houses that Roque lives. He is a strong, muscular man in his early fifties – robust, covered with tattoos from his tour of duty in the army – in perfect health, apparently, until fourteen months ago, when he started to complain of something blocking his throat. He soon noticed symptoms in his voice, his face, his hands, and it became clear that he had a rapidly progressive, almost fulminating, form of lytico. While he is not too disabled at this point, he knows he will be dead in a few months. ‘You can talk to me about it,’ he said, seeing my reluctance. ‘I have no secrets from myself.’ Part of the problem, he said, was the mealymouthed doctors in Agana, who were evasive, who wished to convey hope and reassurance – an optimistic, false view of the lytico, which might prevent him from coming to terms with it, with his rapidly narrowing life and the certainty of death. But his body told him the truth – and John did too.