On the Move: A Life
Page 29
Over the next couple of years, I spent a good deal of time with Stephen and his teacher and mentor, Margaret Hewson. Stephen’s drawings had been published to great acclaim, and he embarked on a number of trips to draw buildings around the world. Together, we went to Amsterdam, Moscow, California, and Arizona.
I met with a number of experts on autism, including Uta Frith in London. We talked mostly about Stephen and other savants, but as I left, she suggested that I meet Temple Grandin, a gifted scientist with a high-functioning form of autism that was just beginning in those days to be called Asperger’s syndrome. Temple, she said, was brilliant and quite different from the autistic children I had met in hospitals and clinics; she had a Ph.D. in animal behavior and had written an autobiography.3 It was becoming increasingly clear, Frith said, that autism did not necessarily mean severely impaired intelligence and an inability to communicate. There were some autistic people who might have developmental delays and a certain inability to read social cues, but they were fully capable and perhaps even highly gifted in many other ways.
I arranged to spend a weekend with Temple at her home in Colorado. I thought this might make an interesting footnote to the piece I was writing on Stephen.
Temple was at pains to be courteous, but it was clear in many ways that she had little understanding of what might be going on in other people’s minds. She herself, she emphasized, did not think in linguistic terms but in very concrete, visual terms. She had great empathy for cattle, and she thought of herself as “seeing from a cow’s point of view.” This, combined with her brilliance as an engineer, had led her to become a world-renowned expert on designing more humane facilities for cattle and other animals. I was very moved by her obvious intelligence and her yearning to communicate, so different from Stephen’s passivity and seeming indifference to others. As she hugged me good-bye, I knew that I would have to write a long essay about her.
A couple of weeks after I had sent my piece about Temple to The New Yorker, I happened to see Tina Brown, the new editor of the magazine, and she said to me, “Temple will be an American hero.” She proved to be right. Temple is a hero now to many in the autism community around the world, widely admired for forcing all of us to see autism and Asperger’s not as neurological deficits so much as different modes of being, ones with their own unique dispositions and needs.
My earlier books had shown patients struggling to survive and adapt (often ingeniously) to various neurological conditions or “deficits,” but for Temple and many of the others I wrote about in An Anthropologist on Mars, their “conditions” were fundamental to their lives and often a source of originality or creativity. I subtitled the book “Seven Paradoxical Tales,” because all of its subjects had found or created unexpected adaptations to their disorders; all had compensating gifts of different sorts.
—
In 1991, I got a phone call about a man (I called him Virgil when I wrote about him in An Anthropologist on Mars) who had been virtually blind since early childhood from retinal damage and cataracts. Now, at the age of fifty, he was about to get married, and his fiancée had urged him to have cataract surgery—what was there to lose? She hoped he might begin a new life as a sighted man.
But when the bandages were removed after surgery, no miraculous cry (“I can see!”) burst from Virgil’s lips. He seemed to be staring blankly, bewildered, without focusing on the surgeon who stood before him. Only when the surgeon spoke—saying, “Well?”—did a look of recognition cross Virgil’s face. He knew that voices came from faces, and he deduced that the chaos of light and shadow and movement he saw must be the face of his surgeon.
Virgil’s experience was almost identical with that of SB, a patient whom the psychologist Richard Gregory had described thirty years earlier, and I spent many hours discussing Virgil’s case with him.
Richard and I had met in Colin Haycraft’s office back in 1972, when Colin was preparing to publish not only Awakenings but Gregory’s book Illusion in Nature and Art. He was a large man, a head taller than I, with a spontaneity, exuberance, and energy of mind and body, combined with a sort of innocence and a fondness for jokes that made me think of him as a huge, ebullient, jocular boy of twelve. I had been enchanted by his earlier books—Eye and Brain and The Intelligent Eye, which showed the easy, delicious working of a powerful, passionate mind and a characteristic amalgam of playfulness and profundity. One could recognize a Gregory sentence as easily as a bar of Brahms.
We both had a special interest in the brain’s visual system and how our powers of visual recognition could be undermined by injury or disease or tricked by visual illusions.4 He felt strongly that perceptions were not just simple reproductions of sensory data from the eye or ear but had to be “constructed” by the brain, a construction involving the collaboration of many subsystems in the brain and constantly informed by memory, probability, and expectations.
Over a long and productive career, Richard showed that visual illusions provided a major way of understanding all sorts of neurological functions. Play was central to him, both intellectual play (he was an avid punster) and as a method in science. He felt that the brain played with ideas, that what we called perceptions were really “perceptual hypotheses” that the brain constructed and played with.
When I lived on City Island, I often got up in the middle of the night to ride my bicycle when the streets were empty, and one night I noticed an odd phenomenon: if I looked at the spokes of the front wheel as it was revolving, there might be a moment when they appeared frozen, as in a still photograph. This fascinated me, and I instantly phoned Richard, forgetting that it must be very early in the morning for him in England. But he took this cheerfully and presented me with three on-the-spot hypotheses. Was the “frozenness” a stroboscopic effect caused by the oscillating current from my dynamo? Was it due to the jerking, saccadic movements of my eyes? Or did it indicate that the brain in fact “constructed” a sense of motion from a series of “stills”?5
We both had a passion for stereoscopic vision; Richard would sometimes send stereo Christmas cards to his friends, and his museum-like house in Bristol was full of old stereoscopes, along with other old optical instruments of every sort. I consulted him often when I was writing about Susan Barry (“Stereo Sue”), who while apparently stereo-blind from early life, had nonetheless acquired stereo vision at the age of fifty. This was an achievement that was considered impossible, current opinion being that there was only a short critical period for stereo experience in early childhood and that if stereo vision was not achieved by the age of two or three, it would be too late.
And then, in the wake of Stereo Sue, I started to lose some of my own vision in one eye, eventually losing it entirely. I would write to Richard about the sometimes frightening things which were happening to my vision and how, after a lifetime of seeing the world in rich, beautiful stereo depth, I now found it so flat and confusing that I seemed at times to lose the very concepts of distance and depth. Richard was endlessly patient with my questions, and his insights were invaluable. I felt that he, more than anyone, helped me make sense of what I was experiencing.
—
Early in 1993, Kate handed me the phone and said, “It’s John Steele, calling from Guam.”
Guam? I had never had a phone call from Guam. I was not even sure where it was. I had had a little correspondence twenty years earlier with a John Steele, a neurologist in Toronto who had co-authored an article on migraine hallucinations in children. That John Steele was known for identifying Steele-Richardson-Olszewski syndrome, a degenerative brain disease now called progressive supranuclear palsy. I lifted the phone, and it turned out to be the same John Steele. He told me how he had since made his life in Micronesia, first in some of the Caroline Islands and now in Guam. Why was he phoning me? He said there was an extraordinary disease called lytico-bodig endemic among the native Chamorro people in Guam. Many of them had symptoms extremely similar to what I had described and filmed in my postencephalitic patient
s. Because I was among the very few people now who had seen such postencephalitics, John wondered if I could meet some of his patients and give him my thoughts.
I remembered hearing about the Guam disease as a resident; it was sometimes considered the Rosetta stone of neurodegenerative diseases, for patients with it often showed symptoms like those of Parkinson’s or ALS or dementia and could perhaps cast light on all of these. Neurologists had gone to Guam for decades trying to crack the cause of the disease, but most of them had given up.
I arrived in Guam a few weeks later, and I was met at the airport by John, an instantly recognizable figure. It was swelteringly hot, and everyone was in colorful shirts and shorts except John, who was nattily dressed in a tropical suit, a tie, and a straw hat. “Oliver!” he shouted. “So good of you to come!”
As he drove us away in his red convertible, he filled me in on the history of Guam; he also pointed out stands of cycads, a very primitive tree which had originally forested the whole of Guam; he knew that I was interested in cycads and other primitive plant forms. Indeed, he had suggested on the phone that I could come to Guam either as a “cycadological neurologist” or as a “neurological cycadologist,” for many people thought that a flour made from the seeds of these cycads, a popular Chamorro food, was responsible for the strange disease there.
For the next few days, I went with John on his house calls. It reminded me of how, as a boy, I used to go with my father on house calls. I met many of John’s patients, and some of them did indeed remind me of my Awakenings patients. I decided I wanted to return to Guam for a longer visit—this time with a camera, to film some of these unique patients.
I found the Guam visit very important at a human level, too. While the postencephalitic patients had been put away for decades, living in a hospital, often abandoned by their families, people with lytico-bodig remained part of their family, part of their community, to the end. This drove home to me how barbaric our own medicine and our own customs are in the “civilized” world, where we put ill or demented people away and try to forget them.
—
One day in Guam, I got talking to John about another interest of mine, color blindness, a subject I had been deeply interested in for years. I had recently seen a painter, Mr. I., who had suddenly lost the ability to perceive color after a lifetime of seeing in color. He knew what he was missing, but if one were born without the ability to see color, then one would have no idea of what color was like. Most “colorblind” people are really color deficient: they have difficulties discriminating certain colors but can easily see others. But the inability to see any color, total congenital color blindness, is extremely rare; it affects perhaps one person in thirty thousand. How would people with such a condition do in a world that, for other people, and for birds and mammals, is full of informative and suggestive colors? Might such achromatopes, like deaf people, develop special, compensatory skills and strategies? Might they create, like the deaf, a whole community and culture?
I mentioned to John that I had heard a rumor—a romantic legend, perhaps—about an isolated valley populated entirely by people who were totally colorblind. John said, “Yes, I know the place. It’s not exactly a valley, but it is very isolated, a tiny coral atoll relatively close to Guam—only twelve hundred miles away.” The island, Pingelap, was near Pohnpei, a larger volcanic island where John had worked for some years. He said he had seen some Pingelapese patients on Pohnpei, and he understood that about 10 percent of Pingelap’s population was totally colorblind.
—
A few months later, Chris Rawlence, who had written the libretto for Michael Nyman’s opera of The Man Who Mistook His Wife for a Hat, proposed doing a series of documentaries with me for the BBC.6 And so we returned to Micronesia in 1994, accompanied by my ophthalmologist friend Bob Wasserman, and Knut Nordby, a Norwegian psychologist who was himself totally colorblind. Chris and his crew organized a precariously small plane to get us to Pingelap, and Bob, Knut, and I immersed ourselves in the unique cultural life and history of these islands. We saw patients and spoke to doctors, botanists, and scientists; we wandered in rain forests, we snorkeled in the reefs, we sampled the intoxicating sakau.
It was not until the summer of 1995 that I settled down to write about these island experiences, and I really conceived of the book as a pair of narrative travelogues: “The Island of the Colorblind,” about Pingelap; conjoined with “Cycad Island,” about the strange disease on Guam. (To these I added a sort of coda about deep, geological time and my favorite ancient plants, cycads.)
I felt free to explore many non-neurological topics as well as neurological ones, and it included more than sixty pages of endnotes, many of them little essays about botany or mathematics or history. So Island was different from any of my previous books: more lyrical, more personal. It remains, in some ways, my favorite book.
—
Nineteen ninety-three not only saw the beginning of new adventures and travels in Micronesia and elsewhere but launched me on another journey, one of mental time travel, recollecting and revisiting in memory some of the passions of my own early years.
Bob Silvers asked me if I would review a new biography of Humphry Davy. This thrilled me, for Davy was an idol of mine when I was a boy; I loved reading about his chemical experiments in the early nineteenth century and repeating them in my little lab. I reimmersed myself in the history of chemistry, and I got to know the chemist Roald Hoffmann.
A few years later, Roald, knowing of my boyhood passion for chemistry, sent me a parcel containing a large poster of the periodic table with photographs of each element, a chemical catalogue, and a little bar of a very dense, greyish metal which I immediately recognized as tungsten. As Roald no doubt surmised, this instantly provoked memories of my uncle whose factory had produced bars of tungsten and manufactured light-bulbs with tungsten filaments. That bar of tungsten was my madeleine.
I began writing about my boyhood, growing up in England before the Second World War, being exiled to a sadistic boarding school during the war, and finding constancy in my passion for numbers and later for elements and the beauty of equations which could represent any chemical reaction. It was a new sort of book for me, combining memoir with a sort of history of chemistry. By the end of 1999, I had written many hundreds of thousands of words, but I felt the book did not quite come together.
—
I used to delight in the natural history journals of the nineteenth century, all of them blends of the personal and the scientific—especially Wallace’s Malay Archipelago, Bates’s Naturalist on the River Amazons, and Spruce’s Notes of a Botanist, and the work which inspired them all (and Darwin too), Alexander von Humboldt’s Personal Narrative. It pleased me to think that Wallace, Bates, and Spruce were all crisscrossing one another’s paths, leapfrogging, on the same stretch of the Amazon during the selfsame months of 1849 and to think that all of them were good friends. (They continued to correspond throughout their lives, and Wallace was to publish Spruce’s Notes after his death.)
They were all, in a sense, amateurs—self-educated, self-motivated, not part of an institution—and they lived, it sometimes seemed to me, in a halcyon world, a sort of Eden, not yet turbulent and troubled by the almost murderous rivalries which were soon to mark an increasingly professionalized world (the sorts of rivalries so vividly portrayed in H. G. Wells’s story “The Moth”).
This sweet, unspoiled, preprofessional atmosphere, ruled by a sense of adventure and wonder rather than by egoism and a lust for priority and fame, still survives here and there, it seems to me, in certain natural history societies, whose quiet yet essential existences are virtually unknown to the public. One such is the American Fern Society, which holds monthly meetings and occasional field trips—“fern forays”—of one sort or another.
In January of 2000, still wrestling with how to complete Uncle Tungsten, I took a trip with about twenty members of the fern society to Oaxaca, where more than seven hundred species of fern have
been described. I had not planned to keep a detailed journal, but there was such a sense of adventure and richness of experience that I wrote almost nonstop for the entire ten-day trip.7
The block I had felt with Uncle Tungsten broke suddenly in the middle of Oaxaca city as I boarded a shuttle bus in the town square to go back to my hotel. Sitting opposite me on the bus were a cigar-smoking man and his wife, both speaking Swiss German. The conjunction of the shuttle bus and the language took me back suddenly to 1946, as I wrote in Oaxaca Journal:
The war had just ended, and my parents decided to visit Europe’s only “unspoiled” country, Switzerland. The Schweizerhof in Lucerne had a tall, silent electric brougham which had been running quietly and beautifully since it was made, forty years earlier. A sudden half-sweet, half-painful memory comes up of my thirteen-year-old self on the verge of adolescence. The freshness and sharpness of all my perceptions then. And my parents—young, vigorous, just fifty.
When I returned to New York, memories of boyhood continued to come to me, and the rest of Uncle Tungsten followed, the personal seeming to weave itself into the historical and the chemical—so this hybrid of a book came into being, with two very different stories and voices somehow meshed together.
—
Someone who shared my deep love of natural history and the history of science was Stephen Jay Gould.
I had read his Ontogeny and Phylogeny and many of his monthly articles in Natural History magazine. I particularly liked his 1989 book Wonderful Life, which gave one a tremendous feeling for the sheer luck—good or bad—which can befall any species of animal or plant and the huge role that chance plays in evolution. As he wrote, if we could “rerun” evolution, it would no doubt turn out completely differently every time. Homo sapiens was the result of a particular combination of contingencies that ended up producing us. He called this a “glorious accident.”