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.[63] 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.
‘I was a very athletic man, and now the disease has pulled me down,’ he told us. ‘I accept it, but sometimes I feel so depressed that I feel like doing something drastic…To commit suicide is no good. It’s not right. But I wish the Lord would take me rather than wait for no result or no cure. If there’s no cure, I would have the Lord take me.’
Roque was deeply sad, he said, that he would not see his children grow up, and that his youngest son (just two now) might not retain any memories of him; he was sad that he would be leaving his wife a widow, and his old parents, still in good health, bereaved.
What will happen with him, I asked John – will he die at home, like Tomasa, or will he go to a hospital? ‘That depends,’ said John, ‘on what he wants, what the family wants, the course of the illness. If you have complete bulbar paralysis, and respiration is affected, you have to have assisted breathing, a respirator, or you die. Some people want this, some do not. I have a couple of patients on respirators at St. Dominic’s – we’ll see them tomorrow.’
Later in the afternoon, Phil and I had planned to go down to the beach at Sumay, said to be the finest for snorkelling in Guam. This was on the military base, so Phil had arranged permission for us to go. We arrived around four, and presented our papers. But our reception at the gate was surly and suspicious, especially when the guards saw that Phil was a Chamorro.
When I tried to put a good-natured, genial spin on things, I was met by a blank, faceless stare – I was reminded, unavoidably, of the hateful episode on Kwajalein, the helplessness of civilians, civility, in the face of military bureaucracy. Phil had warned me that I had best say nothing, that we both had to behave in the most deferential, abject manner, or they would find reason to deny us entrance at all. I had thought, at the time, that his advice was a little overstated – but now I saw that it was not. In the event, we were kept waiting at the gate for an hour, while the guards phoned for various permissions and confirmations. At five o’clock, we were told that our admittance had been approved – but also that it was too late, because the base was now closed. At this point, fortunately (for I was about to explode with rage), a senior officer came along; we could override the regulations this time, he said – we could enter and have our swim, but we would have to be accompanied by military police as long as we were on the base.