Phil choked at this, and the feeling of supervision made me furious, but having come this far, we decided to go ahead and have our swim. Changing into our swimming gear in full sight of a jeep with four police was slightly unnerving, and an antino-mian part of me wanted to do something outrageous – but I controlled myself, with some regret, tried to put the police out of mind, and surrendered to the water.
It was, indeed, exquisite. There are more than three hundred species of coral native to Guam, and the colors of these at Sumay seemed far richer than those at Alma’s, or even those of the glorious corals off Pohnpei. A little farther from shore, we could see the outlines of the wreck of a Japanese warship, richly and strangely metamorphosed by a crust of barnacles and corals – but it would take more time, and scuba gear, to examine it properly. As we swam back in, I could see the shape of the waiting jeep shivering through the transparent waters, and the stiff figures of the MPs, distorted by their shifting refraction. As we dried ourselves in the gloaming, I seethed to think that this perfect reef was denied to the people of Guam, hoarded and locked up by institutional order.
But Phil’s anger had a deeper layer. This was the site of the old village of Sumay, he said as we drove back to the entrance of the base. ‘It was the most beautiful village in the whole of Guam. It was bombed by the Japanese, the first day they attacked Guam; then all the inhabitants were evicted or killed. When the Allies came, the Japanese retreated to those caves in the cliffs you can see, and trying to get them out, the Americans bombed the whole place into dust. That fragment of the church and the graveyard – that’s the only thing left. My grandparents were born here,’ he added, ‘and they are buried here too. Many of us have ancestors in the graveyard here, and we want to visit the graves, pay our respects – but then we have to go through the bureaucratic process you’ve seen. It is a great indignity.’
The next day, John and I set out for St. Dominic’s, a beautiful new hospital, or, as the nuns prefer to call it, Home, with gardens, patios, a tranquil chapel, perched on Mount Barrigada, overlooking Agana. Here were two more patients of John’s – both, like Roque, still in their fifties, and stricken by lytico in its most virulent form. Both had been in perfect health, seemingly, eighteen months before; both had now reached a point where the muscles of respiration were paralyzed, and mechanical ventilation was needed to help them breathe. As we approached their rooms, I heard the heavy, animal-like breathing of their respirators, and the unpleasant sucking sounds made as their throats were suctioned dry (for they could no longer swallow their own secretions and had to have these sucked out mechanically, lest they be aspirated into the trachea and lungs). I could not help wondering whether life was worth it under these conditions, but both patients had children with them – an adult son in one case, an adult daughter in the other – with whom some contact and simple communication was still possible; they could still be read to, watch television, listen to the radio. Their minds were still alive and active, even if their muscles were not, and both had indicated that they wanted to go on, to stay alive as long as they could, even if this meant being maintained on a machine. Both were surrounded by religious pictures and icons, which they gazed at with unblinking eyes. Their faces, I wanted to think, seemed to be at peace, despite the heaving, gurgling bodies below.
Many patients with very advanced bodig come to St. Dominic’s too, in some cases suffering not only from parkinsonism, but from a severe dementia and spasticity as well. In such patients, in the final stages, the mouth hangs open, drooling with saliva; the palate hangs motionless, so that speech and swallowing are impossible; and the arms and legs, severely spastic, become bent in immovable flexion contractures. Patients in this state can hardly be looked after at home by even the most devoted families, and are usually brought to St. Dominic’s, where the nuns are devoted to their care. I was deeply moved by the dedication of the nuns who undertook this care; they reminded me of the Little Sisters of the Poor, an order of nuns I work with in New York. Unlike what one sees in most hospitals, the Sisters’ first care, and continuing concern, is with the dignity and state of mind of each patient. There is always a sense of the patient as a total individual, not just a medical problem, a body, a ‘case.’ And here, where family and communal ties are so close, the patients’ rooms, the corridors, the patios, the gardens of St. Dominic’s, are always thronged with family and neighbors – the family, the village, the community, of each patient is reconstituted here in miniature. Going to St. Dominic’s does not mean a removal from all that is dear and familiar, but rather a translocation of all this, as much as is possible, into the medical milieu of the hospital.
I felt drained by seeing these patients with lytico and bodig in their final, terrible stages, and I wanted desperately to get away, to lie down and collapse on my bed, or swim again in a pristine reef. I am not sure why I was so overwhelmed; much of my practice in New York involves working amid the incurable and disabled, but ALS is rare – I may see only one case every two or three years.
I wondered how John, who has forty or more patients with advanced lytico-bodig, dealt with his feelings. When he was with patients, I noted, he often adopted his booming, professional voice, and an optimistic, bracing, cheery manner – but this was only a surface, behind which he remained intensely sensitive and vulnerable. Phil later told me that when John is alone, or thinks he is alone, he may weep at the plight of his patients, and at his impotence, our impotence, to do anything about it.
After lunch we visited a different part of St. Dominic’s – a pleasant, open room looking onto a garden, where some of the day patients had collected for their afternoon session. St. Dominic’s is not just a chronic-care hospital, but also has an active day program for ambulatory patients who come from all over the island. It is a place where they can meet, enjoy meals together, walk in the gardens, or work in a workshop, and receive therapy of all sorts – physiotherapy, speech therapy, arts and music therapy. It was here that John brought me to see Euphrasia, another patient of his. She is seventy, but looks much younger, and has had a parkinsonian form of bodig for twenty-four years, though not the least memory impairment or dementia. She had moved to California as a young bride soon after the war, and did not revisit Guam for many years. Nevertheless, she came down with bodig in 1969, despite having lived out of Guam for twenty-two years.
Seeing Euphrasia brought home to me the immense lag which might exist between exposure to whatever it is (or was) on Guam, and the subsequent development of lytico-bodig. John told me, indeed, that he had heard of one patient in whom the gap between leaving Guam and developing the disease was more than forty years – and that there might be similar lags in those who came to Guam. No Caucasian, as far as he knew, had ever contracted the disease, but he knew of a few Japanese and Filipino patients who had come to Guam, married Chamorros, entered the culture completely, and then come down with apparent lytico or bodig many years later.[64]
This, for him, was the most convincing clinical evidence of the extraordinary ‘silent’ period in which the lytico-bodig must, in some sense, be present – but subclinical or latent. Was it burning away slowly beneath the surface, all through these years? Or did there have to be a new event, which might ignite a previously harmless, perhaps arrested, process and turn it into an active one? Sometimes he favored the first thought, John said; sometimes the second – though seeing a patient such as Roque, in whom there had been so explosive an onset of disease, erupting in the midst of seemingly perfect health, one had less sense of a steady, ongoing process finally surfacing than of a sudden, lethal transformation.