Oliver Sacks on Cancer, Vision and Science: Revisiting his 2010 Interview
When I was an undergraduate studying Cognitive Science, a professor sent out a short list of recommended reading. Neurologist Oliver Sacks’s The Man Who Mistook His Wife for a Hat topped the list. Despite my then very basic understanding of the human nervous system, from page one I was enthralled, and by the end was successfully convinced that there was no scientific mystery more worthy of study than the human brain.
Oliver Sacks possesses a rare fusion of medical expertise, exquisite story-telling abilities and an intimate understanding of the human experience. His impeccable skill at turning his clinical observations into entertaining – at times comical, at others heart-breaking – tales of mystery and adventure can incite passion and intrigue into any reader, even the most scientifically-uninclined. For these reasons, Sacks has become not only a transformative force and a beloved inspiration to countless budding neuroscientists and neurologists, but also a translational voice to the non-scientific communities.
It was thus with deep sadness that his readers and followers learned that Sacks is presently struggling with terminal cancer. As he shared recently in his New York Times commentary,
“Over the last few days, I have been able to see my life as from a great altitude, as a sort of landscape, and with a deepening sense of the connection of all its parts. This does not mean I am finished with life … I feel intensely alive, and I want and hope in the time that remains to deepen my friendships, to say farewell to those I love, to write more, to travel if I have the strength, to achieve new levels of understanding and insight.”
In honor of his invaluable contributions and in celebration of the adventures that lay before him, the PLOS Neuroscience Community is reposting a 2010 interview with Sacks by Steve Silberman, who explores scientific and cultural dimensions of “neurodiversity” on his PLOS blog, NeuroTribes. Here, Sacks shares his past battles with cancer and discusses the visual system, his personal hallucinations and the state of science and medicine. The original interview can be found here.
– Emilie Reas, PLOS Neuro Community Editor
Oliver Sacks on Vision, His Next Book, and Surviving Cancer
By Steve Silberman
Posted: September 1, 2010 at PLOS Blogs
There’s a endearingly geeky moment in neurologist Oliver Sacks‘ new book, The Mind’s Eye, which is coming out in October. Like most of Sacks’ books — including bestsellers like Awakenings, The Man Who Mistook His Wife for a Hat, and An Anthropologist on Mars — his latest is a collection of minutely observed and empathically drawn case histories that illuminate his patients’ ability to adapt and thrive despite neural injuries and challenges. The theme of this book is vision, and the patients in The Mind’s Eye are coping with blindness, alexia (the inability to read), prosopagnosia (the failure to recognize faces), and other disruptions of their ability to make sense of the world. One patient is a celebrated pianist who has become unable to read musical scores, but is still determined to give concerts; another is a neurobiologist, born with crossed eyes, who suddenly gains the ability to see in 3-D.
Unlike most of Sacks’ books, however, The Mind’s Eye also addresses the neurologist’s own illness and transition to a profoundly altered life. In 2005, he was diagnosed with an ocular melanoma in his right eye. Though the tumor was eliminated by radiation, Sacks is still struggling with profound changes to his visual field caused by the cancer and its treatment. The bearish 77-year old neurologist — who lives a block from his office in Greenwich Village — hasn’t talked much to the press about his illness, but that’s about to change with the publication of his highly frank account of the ordeal in the new book. This is his first in-depth interview on the subject.
The geeky moment occurs when Sacks is in the hospital, forbidden to leave his room because his opthamologist has embedded a chip of radioactive iodine in his eye in hopes of banishing the tumor. The tiny plaque of I-125 triggers a storm of hallucinations — including starfish, daisies, and purple protoplasm — as well as ravaging pain. In the middle of all this, Sacks muses about asking his long-time editor and friend, Kate Edgar, to fetch his beloved collection of fluorescent minerals so he can conduct an experiment. “Perhaps I could light them up by fixing my radioactive eye, my rays on them,” he writes. “It would be quite a party trick!” That’s Sacks: thinking like a subversive 18th century chemist in the most dire situations, eager to cast the light of science into unmapped recesses of the natural world.
For my first post at NeuroTribes, it seems fitting to begin by talking with the neurologist/author, whose humane portraits of people who “think different” — such as autistic author Temple Grandin, the subject of a recent Emmy winning HBO biopic — helped inspire some of the science and culture I’ll be exploring on this blog. After 14 years of writing full-time for Wired, I’m also currently working on a book. (Don’t worry, most of my posts won’t be nearly as long as this one.) I first met Sacks in 2001 after he responded enthusiastically to my article about autism among the families of engineers and programmers in Silicon Valley, “The Geek Syndrome.” Shortly after that I wrote my own amateur case history of the doctor himself, “The Fully Immersive Mind of Oliver Sacks.”
We spoke last week about his new book, the state of his health, his hallucinations (and the startling effects of cannabis on them), his apprenticeships with poets W.H. Auden and Thom Gunn, and the role of science writing in an age when the authority of science is being broadly undermined by religious zealots and he said/she said media.
Thanks to PLoS blogging guru Brian Mossop, my fellow “Ploggers,” and the whole PLoS crew for offering me this platform to explore science, mind, and culture. I’m honored to be included in such a distinguished group of writers and scientists. PLoS is the future of science journals. Welcome to the future of science journalism.
Silberman: Oliver, what happened to you just before Christmas in 2005?
Sacks: It was a Saturday, eight days before Christmas, the 17th. It seemed just an ordinary day. I got up, went for my usual swim, and decided to go to the cinema, but as soon as the previews started, I became aware of something bizarre happening — a sort of incandescent fluttering to my left, which I took to be a visual migraine. But then I became certain that it was in my eye and not in the brain, as a migraine would be. That really alarmed me. I thought, “What’s happening? Am I detaching a retina? Am I going blind?”
I didn’t know what I should do about it — whether I should go to an emergency room or phone up an ophthalmologist, or stay put and see if it all settled. I did the last of these, although I couldn’t concentrate on the film. I kept testing my visual field. Then I noticed that some of the little lights showing the way out of the cinema had disappeared in front of me.
Finally, after about 20 minutes, I burst out of the theater, hoping that in the world outside, everything would look real. But it was evident to me that there was still a triangular chunk of my visual field missing, going from about nine o’clock to eleven o’clock. I phoned up a friend who asked a few questions, suggested a few tests, and then said, “Get yourself to an ophthalmologist ASAP.”
I did so and told my story to the ophthalmologist. He took an ophthalmoscope, looked in my eye — and then I saw him stiffen. He put down the ophthalmoscope and looked at me in a different way, a serious and concerned way. He said, “I see pigmentation. There’s something behind the retina. It could be a hematoma or a tumor. If it’s a tumor, it could be benign or malignant.” Then he said, “Let’s consider the worst case scenario.” I don’t know what he said after that, because a voice in my head started shouting, “Cancer! Cancer! Cancer!”
Sacks: He said he would contact someone who was a great expert on ocular tumors. I spent a very nervous weekend and went to see the specialist a couple of days later. He looked in the eye, dilated the pupil, took photographs, did ultrasound, and sat down with me and Kate. He had a large model of the eye, and he put inside this model a horrid, black, convoluted object — like a black cauliflower or cabbage. I immediately interpreted his meaning: I had a black tumor, a melanoma, in my eye. In my medical student days, one was told melanomas were the most malignant of tumors and everyone died within six months. My thought then was of how, in England, a judge puts the black cap on before uttering a death sentence. So I thought this was my death sentence.
The opthamologist, Dr. Abramson, confirmed that I had a melanoma. He read my thoughts and said, “But these things are highly treatable. The tumors in the eye have a different natural history. They very rarely metastasize, and there’s a good chance of extirpating it entirely with radiation and lasering.” He said, “In the old days, ten to twenty years ago, one would just take the eye out.” He said he had done a thousand such enucleations. But he said I should be tried on radiation first.
I immediately got very impatient. I wanted the radiation the next day, but I had to wait three weeks, because Christmas was coming up and then the New Year. And in those three weeks, though he said these tumors grow very slowly, there were a lot of visual changes. What had been a small segment of missing vision became a whole hemisphere. Various strange distortions appeared, with horizontal lines getting squashed down and vertical lines diverging, due to edema under the retina. So then, three weeks later… Well, people can read the book if they like.
Silberman: Yes they can, in about a month. But it’s important for readers to know that while the tumor has been successfully treated, you’re still coping with profound alterations in your ability to see and navigate. How is your vision now, and what accommodations have you had to make?
Sacks: After June of ’07, the tumor encroached on the fovea and had to be lasered there. So I lost central vision in that eye. I then seemed to pass into a relatively stable period in which I had a little crescent of peripheral vision from about three to seven o’clock. I didn’t fully realize it at the time, but that little crescent was invaluable, because it gave me a full visual field, and a little stereoscopy in the lower part of the field. Since it was peripheral, however, as soon as I looked at anything directly, it became flat. But at least I had a sort of sense of depth and space.
But then in September of last year — as it happens, four days before I had to have knee surgery — I had a hemorrhage in the eye, and my vision went out entirely on that side. I found that condition much more disabling, because I had no sense of anything on the right. I couldn’t see anything to the right of my nose.
I was told that things would clear in six to eight months, but at eight months there was no clearing, and it was evident that there was a clot stuck in the eye. Also, the pressure in the eye was rising. Then ten weeks ago, on June the 8th, I had a thing called a vitrectomy done, removing the bloody vitreous, and at the same time, bringing some sort of clear fluid into the eye. I had hoped that would restore my vision, and almost instantly, the vision started to clear a little bit. But then three days after that, it darkened again.
I then had a second procedure, and the eye bled yet again. I had a third procedure in which a drug called Avastin was put into the eye, which inhibits the growth of blood vessels. Since then, my eye has been steadily clearing, and there has been no regression. But it’s very slow, and it’s still hazy looking out. For example, when I’m at the piano, I can see the black and white keys and count my fingers. But that’s the limit. I’m vaguely conscious of things happening on the right, but my vision there is not really functional yet, though I dare to hope it will become so.
Silberman: In the book, you go on to describe some fascinating experiments you performed on your own vision, where you observed your brain “filling in” the blank spots in your visual field with patterns and hallucinations. The naive view of our visual system is that it works like a camera, passively receiving sense impressions and compiling them in the brain into a more or less accurate picture of the world. But the work of researchers like V.S. Ramachandran and many others has led us to understand that vision is a highly active and even speculative process, with the brain making guesses and predictions about what the eyes can’t see.
In the course of your illness, you discovered that your brain would generate elaborate patterns, even clouds or leaves, to hide the blank space in your vision caused by the tumor. You’ve always been interested in the brain’s generative visual activity — whether caused by illness or psychedelics — and wrote about it at length in your first book, Migraine. But what did you learn from these experiences about how the brain creates a seemingly seamless world out of fragmentary sense impressions?
Sacks: In general terms, I learned that the brain is always busy. In particular, if a sensory input — whether it be vision or hearing or kinesthesia — is taken away, there will be some sort of compensation, and the cortical systems involved in those representations will become hyperactive. This first became clear to me when I spoke to various blind people. One man, for example, who had lost his sight when he was about 20, said that when he read Braille, he didn’t feel it in his fingers, he saw it. And there’s nice evidence that the occipital areas of the brain, and the inferotemporal areas — visual areas — are excited in that sort of situation.
For myself, I was very struck by this “filling in” business. The first thing that struck me was when I was in hospital and I could pay more attention to these things — perhaps too much attention. But the scotoma in my vision, the blind area, was almost like a window looking into a landscape. I could see movement, and people, and buildings in it — things like those my brain concocts while I’m falling asleep or before a migraine. But this seemed to be going on continuously.
And then there was an episode that very much startled me. Kate was in the room at the time too. I was washing my hands, and then for some reason I closed my left eye, and I continued to see the wash basin, the commode next to it, and the mirror very, very clearly — so clearly, in fact, that my first thought was that the dressing over the right eye must be transparent. But it was a huge, thick, opaque dressing. This was something quite different from an after-image. It was more like a strange persistence or perseveration of vision. The image wasn’t being erased in the usual way.
But this sort of thing really only hit me after I had been lasered in June of ’07 and lost my central vision. Then the night I took off the bandage, I saw this great black amoeba — this thing shaped like Australia — but when I looked up at the ceiling, it immediately disappeared. It turned white and became camouflaged by taking on the color of its surroundings. I then found that I could fill it in with simple patterns, like the repeating geometric pattern on my carpet.
Then I discovered another phenomenon which astounded me. Later that month, I went to Iceland for a friend’s wedding. Coming back on the plane, it was very hot, so I took off my shoes and socks. I liked playing with the scotoma, moving it around and putting things “into” it, so I used it to amputate my leg mid-shin. But then I started wiggling my toes, and gradually there was a strange, pinkish, protoplasmic extension around the stump of my leg. This formed itself into the shape of a foot with wiggling toes, and followed all my movements exactly. It didn’t look quite real — it had no skin texture or whatever — but it really was an astounding phenomenon, and made me feel that the visual area had become hypersensitive to other inputs, such as proprioceptive input or some sort of motor afferent.
I also had — and still have — almost continuous hallucinations of a low order: geometric things, especially broken letters, some of them like English letters, some like Hebrew letters, some like Greek, some runes, and some a bit like numbers. They tend to have straight lines rather than curves, but they rarely form actual words. This is not something I said in the book, but if I smoke a little pot, they sometimes become words. And they tend to be in black and white — but when I smoke a little pot, they’re in color.
Silberman: That’s wonderful. What do the words say?
Sacks: Short English words of no particular significance like “may,” or pseudo-words, like “ont.” Also, since my back surgery last year, I’ve been on nortriptyline, which is supposed to block the gating mechanism for pain in the spinal cord. I only take a small dose, because it gives me an intensely dry mouth. But even the small dose has a striking effect of enhancing dreams and involuntary imagery, and upgrading my hallucinations from black-and-white to color, and from geometric patterns to faces and landscapes.
Sacks: Neurologists talk about “elementary hallucinations,” and my own hallucinations used to be elementary. But when I read those passages of The Mind’s Eye for the audio version, I whispered to Kate, “They’re not elementary anymore!” I partly refrain from talking about this in the book because I say nothing about the leg and spine injuries and operations going on at the same time. I wanted to keep things simple. And in fact, I haven’t smoked any pot in a long time, because I’ve been on so many other drugs for a year, I’d be afraid to have the pot on top of them.
Silberman: In the book, you talk about several blind people who each deal with their disability in highly distinctive and individual ways. There’s religion professor John Hull, who describes his state of “deep blindness” — a total absence of any visual imagery, external or internal — in spiritual terms, as “an authentic, autonomous world, one of the concentrated human conditions.” Then there’s Zoltan Torey, an Australian psychologist who was blinded in an industrial accident when he was 21, but developed his ability to visualize details to the point where he shocked his neighbors by single-handedly replacing the gutters on the roof of his house at night. What did these very different experiences of blindness teach you about how different individuals handle disability?
Sacks: They showed me that there is no set way of handling blindness. There can be diametrically opposite ways. There’s the Hull way in which visual memory, visual imagery, visual nostalgia, and visual thought are all lost or renounced. And there’s the Zoltan way, in which visual imagery is emphasized, trained, and heightened.
When I saw Zoltan last year in Australia, I asked him why he didn’t hallucinate. And he said, in a rather Teutonic way, “I wouldn’t allow my cortex to hallucinate. It is strictly obedient to my wishes. I have it visualize in the way that I describe. I will not indulge hallucinations.” Zoltan also regards Hull as someone who has, as it were, caved in to his blindness in a sort of passive spiritual way. I’m not sure what Hull thinks of Zoltan.
Jacques Lusseyran talks about the “visual blind” as a sort of sub-species, and I like that paradoxical category. I wonder which way I would go if… if… if.
I suspect I would go in the Hullian direction. But I’m not sure.
Silberman: Going back in time, few people know that in addition to studying medicine, you were mentored as a young writer by two of the most brilliant poets of the 20th Century, W.H. Auden and Thom Gunn. What did you learn from these poets that med school couldn’t teach you?
Sacks: Basically, they taught me to look at disease, disorder, and suffering in broader human terms, and not just in narrow clinical or physiological terms. To look at predicaments, plights, and situations — not just diseases.
I had a very long, nice meeting with Ved Mehta, who has written very openly about his blindness and his ways of accommodating, which include fabulous so-called facial vision. When he was younger, he would walk rapidly without a cane, “seeing” by the echo of the sound the shape and distance of all objects near him.
Silberman: I’ve seen a video about that amazing kid you mention in a footnote, Ben Underwood, who taught himself to do human echolocation before he died. That was quite something.
Sacks: Oh yes. I just got an email that had been mislaid from July of ’09 about someone similar to Ben who would map his surroundings by making a clicking sound with his teeth, and was even able to go canoeing and avoid obstacles in the water. The man who sent this to me works on sonar installations. If I’d known about this, I would have included it in the footnote.
Silberman: A vision researcher I know online, Mark Changizi, told me he had lunch with you at Caltech in 2005, when you were writing the chapter of your book on “Stereo Sue.” He said that you asked him if he considers himself a naturalist. “Although that’s not a term I readily use,” he said to me in email, “I realize that I am indeed a naturalist, as the fundamental premise of my research concerns understanding our biology in the context of the natural evolutionary environment.” But Mark is still not sure what you meant by asking him that question.
Sacks: I don’t think I meant anything quite as lofty as this. What I meant was that although I love general principles, I am no great shakes at extracting them myself. I feel that I’m sort of collecting specimens and observing phenomena. In this way, I’m like Wallace or Bates, but not like Darwin. Darwin of course was a fabulous collector, but his son says that he seemed to be charged with theorizing power, so that everything immediately generated a hypothesis. Crick was also like that.
Silberman: Didn’t Darwin himself say something about how his mind had become a “machine” for generating hypotheses?
Sacks: Yes, yes, exactly. There’s a peculiar passage in Darwin’s autobiography where he says how, when he was young, he took great delight in poetry, and painting, and music. But now, he said, his mind had become a sort of machine for extracting general laws from large collections of facts.
When I met Crick at a neuroscience meeting in 1987, he seized me by the shoulders at dinner, sat me down next to him, and said, “Tell me stories.” In particular, he wanted to hear stories of visual disorders. You probably saw the piece I wrote about Crick in the New York Review of Books. Crick was a theoretician who felt starved of the data that he needed. Some of this data would come from experimental work, but some of it would come from observations like mine, which look at experiments of nature, in a sense. It’s similar with Ramachandran, though he is more active and ingenious at devising experiments.
Silberman: Your case histories are accounts of these “experiments of nature.” What is the role of the case history in the age of computerized, data-driven medicine?
Sacks: Well, all science should be data-driven or evidence-based — whether it comes from a careful longitudinal study of a single individual or a study of thousands of individuals. The minute study of a single individual could provide data or evidence that may be inaccessible any other way. Doing that depends on patience, trust, and the relationship between the observer and the patient. I think of Luria’s The Mind of a Mnemonist as an ideal case history, though when I first read it, I thought it was a novel.
Silberman: Do you fear that physicians are losing the ability to write precisely observed case histories?
Sacks: Luria lamented in his letters to me that the great observers of the 19th Century are gone now, and that the art of observation has diminished. You can put that down partly to specialization and technology. Certainly, reading some of the classical papers on agnosia and alexia, one feels that no one is writing like that now, or very few people. But there’s a new journal called Neurocase that’s worth reading, and I’ve seen some return to the notion — at least in the more complex areas of neuropsychology and neuropsychiatry — that one needs case histories as well as detailed longitudinal studies and everything else. Case histories can never be replaced. They will always be needed to compliment other sorts of study.
Silberman: Science is under attack these days by religious zealots who want creationism taught in schools alongside evolution, opportunists with political agendas, media outlets that play into bogus controversies about climate change, and so on. What should the role of the science writer be in an age when the role of science in society is being increasingly undermined?
Sacks: In my preface to An Anthropologist on Mars, I quoted G.K. Chesterton’s attack on science as a cold, impersonal, Sherlock Holmesian business, whereas his fictional detective, Father Brown, proceeds by a sort of uncanny empathy. I think as a writer, one needs to bring out the passion and the purity of science, the excitement, the beauty, and the fact that science may provide the only way of observing and understanding immense phenomena that lie beyond the unaided senses — the causes of things, things which are below the surface, like atoms.
I hesitate to use the word purity when there have been so many uncomfortable frauds in science. One can feel ideally that science shouldn’t need policing, because there’s much more pleasure in a genuine result than in making anything up. Nothing that one could make up will be as deep and interesting as the reality. Freeman Dyson says something like, “Nature’s imagination is much richer than ours.”
But I’m genuinely bewildered by people who tout creationism and so forth. It was understandable that Gosse should do so in his book, Omphalos, which was published in 1857, a couple of years before Darwin’s book. Gosse was a very good and passionate naturalist, but also a devout literalist, and this tortured book was his attempt to, as he put it, “untie the geological knot” and reconcile the Bible and the fossil record. But I can’t see how after Darwin, any beliefs like this can be maintained. The sheer, endless beauty and depth of evolutionary theory is far beyond the dullness of a divine Creation.