Finally, when Asao Hirano, a young neuropathologist (and student of Zimmerman’s), came to Guam in 1960 to do a postmortem study of the brains of those who had died from lytico and from bodig, he was able to show that both diseases involved essentially the same changes in the nervous system, though with varying distributions and severity. So pathologically it seemed that lytico and bodig might not be separate diseases, but a single disease which could present in very different ways.[47]
This again was reminiscent of the encephalitis lethargica: when this first broke out in Europe, there seemed to be half a dozen separate diseases rampaging – so-called epidemic polio, epidemic parkinsonism, epidemic schizophrenia, etc. – and it was not realized until pathological studies were done that all of these were in fact manifestations of the same disease.
‘There is no standard form of lytico-bodig,’ John said, as we pulled up in front of a house in the little village of Agat. ‘I could show you a dozen, two dozen patients, and no two would be the same. It is a disease which is polymorphous in the extreme, which can take three, or six, or twenty different forms – you’ll see with Estella and her family.’
We were welcomed by a young woman, who shyly motioned us to come in. ‘Hello, Claudia,’ said John. ‘It’s nice to see you. How is your mother today?’ He introduced me to the family: Jose and Estella, Claudia and her two brothers, in their twenties, and Jose’s sister, Antonia. I was struck by Estella as soon as we entered the house, because she looked so much like one of my post-encephalitic patients as she stood, statuelike, with one arm outstretched, her head tilted back, and an entranced look on her face. One could put her arms in any position, and they would be maintained like this, apparently effortlessly, for hours. Left alone, she would stand motionless, as if spellbound, staring blankly into space, drooling. But the moment I spoke to her, she answered – appropriately, with wit; she was perfectly capable of lucid thought and speech, provided somebody started her going. Similarly, she could, if she was with someone, go shopping, or to church, always pleasant and alert, but with a sort of detached, preoccupied, sleepwalking air, a strange immurement in herself. I wondered how she might react to L-DOPA – it had not yet been tried with her – for such catatonic patients, in my experience, could show the most dramatic reactions to the drug, bursting out of their catatonia with projectile-like force, and sometimes, with the continuation of the drug, developing multiple tics. Perhaps the family had some inkling of this, I am not sure; when I asked them, they said only that she did not seem to be suffering, that she never complained of her catatonia, that she seemed to be perfectly serene inside.
I found myself in two minds at this. Part of me wanted to say: But she is ill, catatonic, she can’t fully respond – don’t you want to bring her back? She has a right to be medicated, we have a duty to medicate her. But I hesitated to say anything, feeling an outsider. Later, when I asked John about this, he said, ‘Yes – that would have been my reaction, when I came here in ‘83. But the attitude to illness is different here.’ In particular, he said, the Chamorros seem to have a certain stoicism or fatalism – he hardly knew which word to use – about illness, and the lytico-bodig in particular.
With Estella, specifically, there was the sense of calm, of her being in her own world, the sense of an achieved equilibrium both within her, and in relation to her family and community – and the fear that medication might ‘stir her up’ and imperil this.
But it was very different for Jose, her husband: physiologically different, as a start – for he had the most intense jamming, clenching, locking parkinsonism, where muscle groups, rigid, fought against each other and jammed each movement at its inception. If he wished to straighten his arm, activation of the triceps was at once opposed by an activation of its antagonist, the biceps (which normally relaxes to allow the arm’s extension), and vice versa – so that the arm got locked, perpetually, in strange positions, and he could neither bend nor straighten it. Similar jams, similar binds, affected all his muscle groups – the whole innervation of the body was perverse. He would go red in the face with the intensity of his effort to get through the block, and sometimes it would give way suddenly, and then the force of his effort would make him jerk violently or fall.
In this sort of parkinsonism, the ‘explosive-obstructive’ sort, the whole body, so to speak, is set against itself, locked in irre-soluble inner conflict. It is a state full of tension, effort, and frustration, a tormenting condition which one of my patients once called ‘the goad and halter.’ Jose’s state was wholly different from the strange muscular compliance, the waxy flexibility, which went with Estella’s catatonia. One could see, in this one couple, the extremes of furious resistance and total surrender – the antipodes of the subcortical will. After Jose and Estella, I examined Claudia and her two brothers briefly, but none of them, it was clear, had any sign of the disease. Nor did they seem to have any fear of getting it, despite the fact that both their parents, and many older relatives, were affected. John contrasted their confidence with the great anxiety felt by members of the older generation, who often feared – especially if they had relatives with the disease – that they might have it already latent in their bodies. These folk attitudes, John pointed out, were entirely appropriate, given the fact that no one born after 1952 had been known to contract the disease.
Jose’s sister, who lives with them, showed yet another form of the disease, one marked by a severe and progressive dementia. She was at first frightened by our presence – she had lunged at me, and tried to scratch me, when we first entered the house. She became angry, and perhaps jealous, as we talked to the others, and now she came across the room, pointing to herself, saying ‘Me, me, me – ME.’ She was also quite aphasic, and very restless, given to bursts of screaming and giggling – but music calmed and cohered her to an amazing extent. This too had been discovered by the family; the traditional knowledge of these disorders, and ways of dealing with them, is very considerable. To calm her, the family started to sing an old folk song, and the old lady, so demented, so fragmented, most of the time, joined in, singing fluently along with the others. She seemed to get all the words, all the feeling, of the song, and to be composed, restored to herself, as long as she sang. John and I slipped out quietly while they were singing, suddenly feeling, at this point, that neurology was irrelevant.
‘You can’t see a family like this,’ said John as we set out the next morning, ‘without wondering what causes so many of them to be affected. You see Jose and his sister, and you think, this must be hereditary. You see Estella and her husband, who are not blood relatives, though their lives are intertwined: Is the lytico-bodig due to something in the environment they share, or has one passed the disease to the other? You look at their children, born in the 1960s, free of the disease, like all their contemporaries, and infer that the cause of the disease, whatever it was, vanished or became inoperative in the late forties or fifties.’
These were some of the clues and contradictions, John continued, which faced Kurland and Mulder when they came here in the 1950s – and which are so difficult to reconcile by any single theory. Kurland was at first inclined to think in terms of a genetic origin. He looked at the early history of the island, and how a near genocide reduced the population from 100,000 to a few hundred – the sort of situation which disposes to the spread of an abnormal trait or gene (as with the achromatopsia on Pin-gelap) – yet there was no simple Mendelian pattern linking those with the disease. He wondered, in the absence of such a pattern, whether this was a gene with ‘incomplete penetrance.’ (He wondered too if a genetic predisposition to lytico-bodig might also have a paradoxical, selective advantage – perhaps increasing fertility or conferring immunity to other diseases.) But he had to wonder whether there might not be some environmental factor, in addition to a genetic susceptibility, a ‘necessary adjunct,’ as he put it, to developing the disease.