When I asked him what stayed in his mind above all, he said, ‘The night fishing in Pingelap…that was fantastic.’ And then, in a sort of dreamlike litany, ‘The cloudscapes on the horizon, the clear sky, the decreasing light and deepening darkness, the nearly luminous surf at the coral reefs, the spectacular stars and Milky Way, and the shining flying fishes soaring over the water in the light from the torches.’ With an effort he pulled himself back from the night fishing, though not before adding, ‘I would have no trouble at all tracking and netting the fish – maybe I’m a born night fisher myself!’
But was Pingelap an island of the colorblind after all, an island of the Wellsian sort I had fantasied or hoped for? Such a place, in the full sense, would have to consist of achromatopes only, and to have been cut off from the rest of the world for generations. This was manifestly not the case with the island of Pingelap or the Pingelapese ghetto of Mand, where the achro-matopes were diffused amid a larger population of color-normals.[44]
Yet there was an obvious kinship – not just familial, but perceptual, cognitive – among the achromatopes we met on Pingelap and Pohnpei. There was an immediate understanding and sharing between them, a commonality of language and perception, which instantly extended to Knut as well. And everyone on Pingelap, colorblind or color-normal, knows about the maskun, knows that it is not only colorblindness that those affected must live with, but a painful intolerance of bright light and inability to see fine detail. When a Pingelapese baby starts to squint and turn away from the light, there is at least a cultural knowledge of his perceptual world, his special needs and strengths, even a mythology to explain it. In this sense, then, Pingelap is an island of the colorblind. No one born here with the maskun finds himself wholly isolated or misunderstood, which is the almost universal lot of people with congenital achromatopsia elsewhere in the world.
Knut and I each stopped in Berkeley, separately, on our way back from Pohnpei, to visit our achromatopic correspondent, Frances Futterman, and tell her what we had found on the island of the colorblind. She and Knut were especially excited to meet one another finally; Knut told me later that it was ‘an unforgettable and very stimulating experience – we had so much to talk about and so much to share with each other that we talked incessantly like excited children for several hours.’
Like many achromatopes in our society, Frances grew up with a severe degree of disability, for although her condition was diagnosed relatively early, good visual aids were not available to her, and she was forced to remain indoors as much as possible, avoiding any situation with bright light. She had to contend with a great deal of misunderstanding, and isolation, from her peers. And perhaps most important, she had no contact with others of her kind, with anyone who could share and understand her experience of the world.
Did such isolation have to exist? Could there not be a sort of community of achromatopes who (even though geographically separated) were bound together by commonalities of experience, of knowledge, of sensibility, of perspective? Was it possible that even if there was no actual island of the colorblind, there might be a conceptual or metaphoric one? This was the vision which haunted Frances Futterman and inspired her, in 1993, to start an Achromatopsia Network, publishing monthly newsletters so that achromatopes all over the country – and potentially all over the world – could find each other, communicate, share their thoughts and experiences.
Her network and newsletter – and now a Web site on the Internet – have indeed been very successful, have done much to annul geographical distance and apartness. There are hundreds of members spread around the world – in New Zealand, Wales, Saudi Arabia, Canada, and now in Pohnpei too – and Frances is in contact with them all, by phone, fax, mail, Internet. Perhaps this new network, this island in cyberspace, is the true Island of the Colorblind.
Book II
CYCAD ISLAND
Guam
It all started with a phone call, at the beginning of 1993. ‘It’s a Dr. Steele,’ Kate said. ‘John Steele, from Guam.’ I had had some contact with a John Steele, a neurologist in Toronto, many years before – could this possibly be the same one? And if so, I wondered, why should he be calling me now, calling from Guam? I picked up the phone, hesitantly. My caller introduced himself; he was indeed the John Steele I had known, and he told me that he now lived in Guam, had lived and worked there for a dozen years.
Guam had a special resonance for neurologists in the 1950s and ‘60s, for it was then that many descriptions were published of an extraordinary disease endemic on the island, a disease the people of Guam, the Chamorros, called lytico-bodig. The disease, seemingly, could present itself in different ways – sometimes as ‘lytico,’ a progressive paralysis which resembled amyotrophic lateral sclerosis (ALS, or motor neuron disease), sometimes as ‘bodig,’ a condition resembling parkinsonism, occasionally with dementia. Ambitious researchers converged on Guam from all over the world, eager to crack this mysterious disease. But, strangely, the disease defeated all comers, and, with repeated failures, the excitement died down. I had not heard anyone mention the lytico-bodig for twenty years, and presumed it had died out quietly, unexplained.
This was far from the case, John now told me. He still had hundreds of patients with lytico-bodig; the disease was still very active – and still unexplained. Researchers had come and gone, he said, few stayed too long. But what had especially struck him, after twelve years on the island, and seeing hundreds of these patients, was the lack of uniformity, the variability and richness, the strangeness of its presentations, which seemed to him more akin to the range of post-encephalitic syndromes seen in vast numbers after the encephalitis lethargica epidemic in the First World War.
The clinical picture of bodig, for example, was often one of a profound motionlessness, almost catatonia, with relatively little tremor or rigidity – a motionlessness which might suddenly dissolve or switch explosively into its opposite when these patients were given the smallest dose of L-DOPA – this, he thought, seemed extremely similar to what I had described with my post-encephalitic patients, in Awakenings.
These post-encephalitic disorders have all but disappeared now, and since I had worked with a large and unique population of (mostly elderly) post-encephalitic patients in New York during the 1960s and ‘70s, I was among the very few contemporary neurologists who had actually seen them.[45] So John was most eager that I come to see his patients in Guam, so that I could make direct comparisons and contrasts between them and my own.