On the Move: A Life

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  I was working hard on a new book, The Mind’s Eye, when a new series of mishaps and surgical challenges hit me. In September of 2009, immediately after the hemorrhage in my right eye, I had to have a total replacement of my left knee (this too, of course, generated a modest journal). I was told that I had a window of eight weeks or so after the surgery to regain full range of motion at the knee; if I did not succeed in this, I would have a stiff leg for the rest of my life. Working the knee, tearing down scar tissue, would be very painful. “Don’t be brave,” the surgeon said. “You can have all the painkillers you need.” My therapists, moreover, spoke of the pain in almost amorous terms. “Embrace it,” they said. “Sink into it.” It was “good pain,” they insisted, and pushing myself to the limits was crucial if I was to gain full flexibility in the short window I had.

  I was doing nicely in rehab, gaining range of motion and strength by the day, when an unwelcome further problem hit me: the sciatica I had battled for many years reemerged, slowly, slyly, at first, but rapidly reaching an intensity beyond anything I had known before.

  I struggled to continue the rehab, to keep active, but the sciatic pain beat me down, and by December I was bedridden. I had lots of morphine left from my knee surgery—it had been invaluable helping with the “good” knee pain—but it was virtually useless against the neuralgic pain typical of a crushed spinal nerve. (This is so of all “neuropathic” pain.) It became absolutely impossible to sit, even for a second.

  I was unable to sit and play the piano—a severe deprivation, because I had returned to piano-playing and music lessons when I had turned seventy-five (having written about how even older people can learn new skills, I thought it was time to take my own advice). I tried to play standing up, but I found this impossible.

  I did all my writing standing up; I made a special high platform on my worktable, using ten volumes of the Oxford English Dictionary as props. The concentration involved in writing, I found, was almost as good as the morphine and had no side effects. I hated lying in bed, in a hell of pain, and spent as many hours as I could writing at my improvised standing desk.

  Some of my thinking and writing and reading at this time, indeed, was about pain, a subject I had never really thought about. My own recent experience, in the course of two months, had shown me that there were at least two radically different sorts of pain. The pain from my knee surgery was entirely local; it did not spread beyond the knee area and was entirely dependent on how much I stretched the operated-upon and contracted tissues. I could easily quantify it on a ten-point scale, and, above all, as the therapists said, it was “good pain,” pain one could embrace, work through, and conquer.

  The “sciatica” (an inadequate term) was wholly different in quality. It was not local, as a start; it spread far beyond the area innervated by my impinged L5 nerve roots on the right. It was not a predictable response to the stimulus of stretching, as the knee pain was. Instead, it came in sudden paroxysms that were quite unpredictable and could not be prepared for; one could not grit one’s teeth in advance. Its intensity was off the scale; there was no quantifying it; it was, simply, overwhelming.

  Even worse, this sort of pain had an affective component all its own, which I found difficult to describe, a quality of agony, of anguish, of horror—words which still do not catch its essence. Neuralgic pain cannot be “embraced,” fought against, or accommodated. It crushes one into a quivering, almost mindless sort of pulp; all one’s powers of will, one’s very identity, disappear under the assault of such pain.

  I reread Henry Head’s great Studies in Neurology, where he contrasts “epicritic” sensations—precisely localized, discriminatory, and proportional to stimulation—with “protopathic” sensations: diffuse, affect laden, paroxysmal. This dichotomy seemed to correspond well to the two types of pain I had experienced, and I wondered about writing a little, very personal book or essay on pain, resurrecting, among other things, Head’s long-forgotten terms and distinctions. (I inflicted my thoughts at length on friends and colleagues, but I never completed the essay I intended.)

  By December, my sciatica had become so overwhelming that I could no longer read or think or write and, for the first time in my life, thought about suicide.1

  Spinal surgery was scheduled for December 8. I was on huge doses of morphine at this point, and my surgeon had warned me that the pain might become even worse, from postoperative edema, for a couple of weeks after surgery—as, indeed, turned out to be the case. December of 2009, then, continued very grim, and perhaps the heavy medications I was taking for pain heightened all the feelings I had at the time, the often sudden shifts between hope and fear.

  Unable to bear twenty-four hours a day on my bed but still needing to lie down, I started (a stick in one hand, holding Kate’s arm with the other) to make my way to the office, where I could at least dictate letters and answer phone calls, make believe I was back at work, while lying on the office couch.

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  Shortly after my seventy-fifth birthday in 2008, I met someone I liked. Billy, a writer, had just moved from San Francisco to New York, and we began having dinners together. Timid and inhibited all my life, I let a friendship and intimacy grow between us, perhaps without fully realizing its depth. Only in December of 2009, still recuperating from knee and back surgeries and racked with pain, did I realize how deep it was.

  Billy was going to Seattle to spend Christmas with his family, and just before he went, he came to see me and (in the serious, careful way he has) said, “I have conceived a deep love for you.” I realized, when he said this, what I had not realized, or had concealed from myself before—that I had conceived a deep love for him too—and my eyes filled with tears. He kissed me, and then he was gone.

  I thought of him almost constantly while he was away, but not wanting to disturb him while he was with his family, I awaited his phone calls with intense eagerness combined with a sort of tremulousness. On the days when he could not phone me at the usual time, I became terrified that he had been disabled or killed in a traffic accident and almost sobbed with relief when, an hour or two later, he called.

  There was an intense emotionality at this time: music I loved, or the long golden sunlight of late afternoon, would set me weeping. I was not sure what I was weeping for, but I would feel an intense sense of love, death, and transience, inseparably mixed.

  Lying in bed, I kept a notebook of all my feelings—a notebook devoted to “falling in love.” Billy came back late on the evening of December 31, bringing a bottle of champagne. We toasted each other when he opened the bottle, each saying, “To you.” And then we toasted the New Year as it came in.

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  In the last week of December, the nerve pain had started to grow less. Was this because the postoperative edema was settling? Or was it—a hypothesis I could not help entertaining—because the joy of being in love was a match for the pain of the neuralgia and could alleviate it almost as well as Dilaudid or fentanyl? Did being in love itself flood the body with opioids, or cannabinoids, or whatever?

  By January, I was back to writing on my improvised desk of OEDs, and I was now able to go out a bit, provided I could stand. I stood at the back of concert halls and lecture halls, went to restaurants if they had a bar I could stand at, and resumed seeing my analyst, though I had to stand when I faced him in his consulting room. I went back to the manuscript of The Mind’s Eye, abandoned on my desk when I became bed-bound.

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  It has sometimes seemed to me that I have lived at a certain distance from life. This changed when Billy and I fell in love. As a twenty-year-old, I had fallen in love with Richard Selig; as a twenty-seven-year-old, tantalizingly, with Mel; as a thirty-two-year-old, ambiguously, with Karl; and now (for God’s sake!) I was in my seventy-seventh year.

  Deep, almost geological changes had to occur; in my case, the habits of a lifetime’s solitude, and a sort of implicit selfishness and self-absorption, had to change. New needs, new f
ears, enter one’s life—the need for another, the fear of abandonment. There have to be deep, mutual adaptations.

  For Billy and me, these were made easier by shared interests and activities; we are both writers, and this, indeed, is how we met. I had read proofs of Billy’s book The Anatomist and admired it. I wrote to him and suggested that we might meet if he found himself on the East Coast (which he did, on a visit to New York in September of 2008). I liked his thinking, which was both serious and playful, his sensitivity to the feelings of others, and his combination of forthrightness and delicacy. It was a new experience for me to lie quietly in someone’s arms and talk, or listen to music, or be silent, together. We learned to cook and eat proper meals together; I had more or less lived on cereal up to this point, or sardines, which I would eat out of the tin, standing up, in thirty seconds. We started to go out together—sometimes to concerts (which I favored), sometimes to art galleries (which he favored), and often to the New York Botanical Garden, which I had traipsed around, alone, for more than forty years. And we started to travel together: to my city, London, where I introduced him to friends and family; to his city, San Francisco, where he has many friends; and to Iceland, for which we both have a passion.

  We often swim together, at home or abroad. We sometimes read our works in progress to each other, but mostly, like any other couple, we talk about what we are reading, we watch old movies on television, we watch the sunset together or share sandwiches for lunch. We have a tranquil, many-dimensional sharing of lives—a great and unexpected gift in my old age, after a lifetime of keeping at a distance.

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  They called me Inky as a boy, and I still seem to get as ink stained as I did seventy years ago.

  I started keeping journals when I was fourteen and at last count had nearly a thousand. They come in all shapes and sizes, from little pocket ones which I carry around with me to enormous tomes. I always keep a notebook by my bedside, for dreams as well as nighttime thoughts, and I try to have one by the swimming pool or the lakeside or the seashore; swimming too is very productive of thoughts which I must write, especially if they present themselves, as they sometimes do, in the form of whole sentences or paragraphs.

  When writing my Leg book, I drew heavily on the detailed journals I had kept as a patient in 1974. Oaxaca Journal, too, relied heavily on my handwritten notebooks. But for the most part, I rarely look at the journals I have kept for the greater part of a lifetime. The act of writing is itself enough; it serves to clarify my thoughts and feelings. The act of writing is an integral part of my mental life; ideas emerge, are shaped, in the act of writing.

  My journals are not written for others, nor do I usually look at them myself, but they are a special, indispensable form of talking to myself.

  The need to think on paper is not confined to notebooks. It spreads onto the backs of envelopes, menus, whatever scraps of paper are at hand. And I often transcribe quotations I like, writing or typing them on pieces of brightly colored paper and pinning them to a bulletin board. When I lived in City Island, my office was full of quotations, bound together with binder rings that I would hang to the curtain rods above my desk.

  Correspondence is also a major part of life. On the whole, I enjoy writing and receiving letters—it is an intercourse with other people, particular others—and I often find myself able to write letters when I cannot “write,” whatever Writing (with a capital W) means. I keep all the letters I receive, as well as copies of my own. Now, trying to reconstruct parts of my life—such as the very crucial, eventful time when I came to America in 1960—I find these old letters a great treasure, a corrective to the deceits of memory and fantasy.

  A vast amount of writing has gone into my clinical notes—and for many years. With a population of five hundred patients at Beth Abraham, three hundred residents in the Little Sisters homes, and thousands of patients in and out of Bronx State Hospital, I wrote well over a thousand notes a year for many decades, and I enjoyed this; my notes were lengthy and detailed, and they sometimes read, others said, like novels.

  I am a storyteller, for better and for worse. I suspect that a feeling for stories, for narrative, is a universal human disposition, going with our powers of language, consciousness of self, and autobiographical memory.

  The act of writing, when it goes well, gives me a pleasure, a joy, unlike any other. It takes me to another place—irrespective of my subject—where I am totally absorbed and oblivious to distracting thoughts, worries, preoccupations, or indeed the passage of time. In those rare, heavenly states of mind, I may write nonstop until I can no longer see the paper. Only then do I realize that evening has come and that I have been writing all day.

  Over a lifetime, I have written millions of words, but the act of writing seems as fresh, and as much fun, as when I started it nearly seventy years ago.

  1. My friend and colleague Peter Jannetta—we were residents together at UCLA—was able to make a discovery, and perfect a technique, which completely altered and often saved the lives of people with trigeminal neuralgia, a paroxysmal pain in the eye and face which (before Peter’s work) had no remedy, was often “beyond bearing,” and not infrequently led to suicide.

  (Credit pai1.1)

  At Oxford, ca. 1953

  With some of my fellow medical students at the Central Middlesex Hospital in 1957

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  With my new 250cc Norton motorbike in 1956

  On a trip to Jerusalem in 1955, my mother greeted the future prime minister, Levi Eshkol. My father and I are standing behind her.

  May 1961, on the road with Mac and Howard, my trucker companions

  Lifting weights as a novice at the Maccabi club in London, 1956

  I am standing at the left, taking in the scene on the lifting platform at Venice Beach.

  A full squat with 600 pounds, a California state record I set in 1961

  My official portrait as a UCLA resident, and in the neuropathology lab, 1964

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  My little house in Topanga Canyon was dwarfed by an oak tree, but was big enough to accommodate a piano.

  Auntie Len

  My mother

  Thom Gunn, around the time we met in 1961

  I took this photograph of my friend Carol Burnett in Central Park in 1966.

  Some of my own photographs, ca. 1963: a little shop in Topanga Canyon, Mel walking near Venice Beach, and a pool hall in Santa Monica

  In New York, ca. 1970

  At Muscle Beach with my beloved BMW motorbike

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  In Greenwich Village, 1961, on my new BMW R60

  Some of my many “think boards” from Awakenings days

  Recovering from my leg accident in Norway, 1974

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  Writing: on a car roof, in the Amsterdam train station, on a train

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  At Blue Mountain Center, 2010

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  Seeing patients at Beth Abraham, ca. 1988

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  With Peter Brook and our Tourettic friend Shane Fistell, 1995

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  With Temple Grandin, 1994

  With Robin Williams in 1989, on the set of Awakenings

  Roger Hanlon and I share a love for squid, cuttlefish, and other cephalopods.

  A still from the 1974 documentary of Awakenings

  I tacked up a sign in my house on City Island reminding myself to say no to invitations so I could preserve writing time.

  With my three brothers, David, Marcus, and Michael, at our parents’ golden wedding anniversary in 1972

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  With my father at 37 Mapesbury on his ninety-second birthday in 1987

  In Florence, 1988, where I had a revelatory dinner with Gerald M. Edelman

  Talking with Edelman at another conference a few ye
ars later, in Bologna

  Working with the Little Sisters of the Poor, 1995

  Ralph Siegel, Bob Wasserman, Semir Zeki, and I presented a poster on the colorblind painter at the 1992 Society for Neuroscience annual meeting.

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  Strolling in 2010 on Darwin’s Sandwalk with my oldest friend, Eric Korn

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  Visiting Jonathan Miller in 1987 at his house in London

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  With Kate Edgar, my assistant and collaborator for more than thirty years, in 1995