1996 - The Island of the Colorblind

by Oliver Sacks

  We had been invited by a local physician and colleague of Greg’s, May Okahiro, to experience a traditional sakau ceremony that evening. It was a cloudless evening, and we got to her house at sunset, and settled into chairs on her deck, overlooking the Pacific. Three Pohnpeian men, wiry and muscular, arrived, carrying pepper roots and a sheaf of slimy inner bark from a hibiscus plant – a large peitehl awaited them in the courtyard. They chopped the roots into little pieces, and then started pounding those with heavy stones, in an intricate, syncopated rhythm like the one we heard across the water on our return from Nan Madol, a sound at once attention holding and hypnotic, because, like a river, it was both monotonous and ever changing. Then one man got up, went to get fresh water, and poured this in, a little at a time, to wet the pulpy mass in the metate, while his companions continued their complex, iridescent rhythm.

  The roots were all macerated now, their lactones emulsified; the pulp was placed on the sinewy, glistening hibiscus bark, which was twisted around it to form a long, closely wound roll. The roll was wrung tighter and tighter, and the sakau exuded, viscous, reluctant, at its margins. This liquid was collected carefully in a coconut shell, and I was offered the first cup. Its appearance was nauseating – grey, slimy, turbid – but thinking of its spiritual effects, I emptied the cup. It went down easily, like an oyster, numbing my lips slightly as it did so.

  More sakau was squeezed out of the hibiscus sheath, and a second cup of fluid obtained – it was offered to Knut, who took it in the proper way, hands crossed, palms up, and then quaffed it down. The cup, emptied and refilled half a dozen times, went to each person, according to a strict order of precedence. By the time it came back to me, the sakau was thinner. I was not wholly sorry, for a sense of such ease, such relaxation, had come on me that I felt I could not stand, I had to sink into a chair. Similar symptoms seemed to have seized my companions – but such effects were expected, and there were chairs for us all.

  The evening star was high above the horizon, brilliant against the near-violet backdrop of the night. Knut, next to me, was looking upward as well, and pointed out the polestar, Vega, Arc-turus, overhead. ‘These are the stars the Polynesians used,’ said Bob, ‘when they sailed in their proas across the firmament of space.’ A sense of their voyages, five thousand years of voyaging, rose up like a vision as he talked. I felt a sense of their history, all history, converging on us now, as we sat facing the ocean under the night sky. Pohnpei itself felt like a ship – May’s house looked like a giant lantern, and the rocky prominence we were on like the prow of the ship. ‘What good chaps they are!’ I thought, eyeing the others. ‘God’s in his heaven and all’s well with the world!’

  Startled at this unctuous, mellifluous flow of thought – so far from my usual anxious, querulous frame of mind – I realized my face was set in a mild, vapid smile; and looking at my companions, I could see the same smile had them too. Only then did I realize that we were all stoned; but sweetly, mildly, so that one felt, so to speak, more nearly oneself.

  I gazed at the sky once again, and suddenly a strange reversal or illusion occurred, so that instead of seeing the stars in the sky, I saw the sky, the night sky, hanging on the stars, and felt I was actually seeing Joyce’s vision of ‘the heaventree of stars hung with humid nightblue fruit.’42 And then, a second later, it was ‘normal’ again. Something odd was going on in my visual cortex, I decided, a perceptual shift, a reversal of foreground and background – or was this a shift at a higher level, a conceptual or metaphoric one? Now the sky seemed full of shooting stars – this, I assumed, was an effervescence in my cortex, and then Bob said, ‘Look – shooting stars!’ Reality, metaphor, illusion, hallucination, seemed to be dissolving, merging into one another.

  I tried to get up, but found I could not. There had been a gradually deepening numbness in my body, starting as a tingling and numbness in my mouth and lips, and now I no longer knew where my limbs were, or how I could get them to move. After a momentary alarm, I yielded to the feeling – a feeling which, uncomprehended, was frightening uncontrol, but which, now accepted, was delicious, floating, levitation. ‘Excellent!’ I thought, the neurologist in me aroused. ‘I have read of this, and now I’m experiencing it. Lack of light touch, lack of proprioception – this must be what de-afferentation feels like.’ My companions, I saw, were all lying motionless in their chairs, levitating too, or perhaps asleep.

  All of us, indeed, slept deeply and dreamlessly that night, and the next morning awoke crystal clear, refreshed. Clear, at least, cognitively and emotionally – though my eyes were still playing tricks, lingering effects, I presumed, of the sakau. I got up early and recorded these in my notebook:

  Floating over coral-heads. Lips of giant clams, persev-erating, filling whole visual field. Suddenly a blue blaze. Luminous blobs fall from it. I hear the falling blobs distinctly; amplifying, they fill my auditory sensorium. I realize it is my heartbeats, transformed, that I am hearing.

  There is a certain motor and graphic facilitation, perseveration too. Extracting myself from the sea bottom, the clam lips, the blue falling blobs, I continue writing. Words speak themselves aloud in my mind. Not my usual writing, but a rapid perseverative scrawl which at times more resembles cuneiform than English. The pen seems to have an impetus of its own – it is an effort to stop it once it has started.

  These effects continue at breakfast, which I share with Knut.43 A plate of bread, but the bread is pale grey. Stiff, shining, as if smeared with paint, or the thick, shiny, grey sludge of the sakau. Then, deliriously, liqueur chocolates – pentagonal, hexagonal, like the columns at Nan Madol. Ghost petals ray out from a flower on our table, like a halo around it; when it is moved, I observe, it leaves a slight train, a visual smear, reddish, in its wake. Watching a palm waving, I see a succession of stills, like a film run too slow, its continuity no longer maintained. And now, isolated images, scenes, project themselves on the table before me: our first moment on Pingelap, with dozens of laughing children running out of the forest; the great floodlit hoop of the fisherman’s net, with a flying fish struggling, iridescent, inside it; the boy from Mand, running down the hill, visored, like a young knight, shouting, ‘I can see, I can see.’ And then, silhouetted against the heaventree of stars, three men round a peitehl, pounding sakau.

  That evening we all packed up, sad to be leaving these islands. Bob would be returning directly to New York, and Knut heading back, by stages, to Norway. Bob and I had seen Knut at first as a charming, scholarly, slightly reserved colleague – an expert on, and exemplar of, a rare visual condition. Now, after our few weeks together, we saw all sorts of other dimensions: his omnivorous curiosity and sometimes unexpected passions (he was an expert on trams and narrow-gauge railways and was full of recondite knowledge on these), his sense of humor and adventure, his cheerful adaptability. Having seen the difficulties which attend achromatopsia, especially in this climate – above all the sensitivity to light and inability to see fine detail – we had a renewed appreciation of Knut’s determination, his boldness in making his way around new places, his openness to every situation despite his poor sight (perhaps indeed his resourcefulness and unerring sense of direction had been heightened in compensation for this). Reluctant to say goodbye, the three of us stayed up half the night, finishing off a bottle of gin which Greg had given us. Knut took out the cowrie necklace which Emma Edward had given him on Pingelap and, turning it over and over in his hands, started to reminisce about the trip. ‘To see an entire community of achromats has changed my entire perspective,’ he said. ‘I am still reeling from all of these experiences. This has been the most exciting and interesting journey I will ever make in my life.’

  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.

  The parkinsonism which affected my post-encephalitic patients had been caused by a virus; other forms of parkinsonism are hereditary, as in the Philippines; and yet others have been linked to poisons, as with the parkinsonian manganese miners in Chile or the ‘frozen addicts’ who destroyed their midbrains with the designer drug MPTP. In the 1960s, it had been suggested that the lytico-bodig was also caused by a poison, acquired through eating the seeds of the cycad trees which grew on the island. This exotic hypothesis was all the rage in the mid-sixties when I was a neurology resident – and I was especially taken by it because I had a passion for these primitive plants, a passion which went back to childhood. Indeed, I have three small cycads in my office – a Cycas, a Dioon, and a Zamia, all clustered around my desk (Kate has a Stangeria beside hers) – and I mentioned this to John.

  ‘Cycads – this is the place for them, Oliver!’ he boomed. ‘We have them all over the island; the Chamorros love to eat the flour made from their seeds – they call it fadang or federico…Whether this has anything to do with lytico-bodig is another matter. And on Rota, north of here, a short hop in a plane, you can see absolutely untouched cycad jungles, so thick, so wild, you’d think you were in the Jurassic.

  ‘You’ll love it, Oliver, whichever hat you wear. We’ll go around the island seeing cycads and patients. You can call yourself a neurological cycadologist, or a cycadological neurologist – either way, it will be a first for us on Guam!’

  As the plane began its descent, circling the airport, I got my first glimpse of the island – it was far bigger than Pohnpei, and elongated, like a giant foot. As we skimmed over the southern end of the island, I could see the small villages of Umatac and Merizo nestled in their hilly terrain. One could see, from a height, how the entire northeastern part of the island had been turned into a military
base; and the skyscrapers and superhighways of central Agana rapidly loomed as we descended.

  The terminal was teeming with people of a dozen nations, scurrying in all directions – not only Chamorros, Hawaiians, Palauans, Pohnpeians, Marshallese, Chuukese, and Yapese, but Filipinos, Koreans, and, in vast numbers, Japanese. John was waiting at the barrier, an easy figure to pick out among the bustling crowds, for he was tall and fair, with very pale hair and a ruddy complexion. He was the only person in the entire airport, as far as I could see, wearing a suit and tie (most were dressed in brightly colored T-shirts and shorts). ‘Oliver!’ he boomed, ‘Welcome to Guam! So good to see you! You survived the Island Hopper, eh?’

  We walked through the steaming airport and out through the parking lot to John’s car, a battered white convertible. We skirted Agana, and started toward the southern part of the island, to the village of Umatac, where John lives. I had been somewhat taken aback by the airport, but now as we drove south, the hotels, the supermarkets, the Western bustle, died away, and we were soon in gentle, undulating country. The air grew cooler as the road climbed higher and wound along the slopes of Mount Lamlam, the highest point on the island. We stopped at a lookout point, got out, and stretched. There were grassy slopes all around us, but higher, on the mountain, a thick cloak of trees. ‘You see those bright green dots, standing out against the darker foliage?’ John asked me. ‘Those are the cycads, with their new foliage. You’re probably used to Cycas revoluta, the bristly, low Japanese cycad, which one sees everywhere,’ he added. ‘But what we have here is a much larger, indigenous species, circinalis – they look almost like palms from a distance.’ Pulling out my binoculars, I scanned them with delight, glad I had made the long journey to this island of cycads.