Like millions of readers I had a lump in my throat as I read Oliver Sacks reveal his diagnosis of terminal cancer earlier this year. Every doctor aspires to be a little like Sacks whether for his sharp intellect, his obvious humanity or his exquisite writings that go to the core of what it means to be human and frail.
In February he calmly declared that metastatic melanoma affecting his liver meant that his luck had run out. I found it hard to share his calm but then like the genial, grandfather-figure he is, he reassured us, oncologists and all, that he still felt intensely alive, wanting to “deepen my friendships, to write more, to achieve new levels of understanding and insight.”
His mention of finding a new focus and perspective resonated with me – it is as close to a universal finding as there is in clinic, where ordinary individuals and famous people all say that cancer forced them to contemplate their life and legacy.
On the Move: A Life by Oliver Sacks review – road stories of an uneasy rider
It’s not always pretty, I concede. Cancer triggers joyful marriage but also bitter divorce. It unites bickering siblings but also tears apart those previously contented. It fosters a peaceful reckoning and loving coexistence but equally tempestuous anger and unrelenting sorrow. All I can say is letting go is hard. Actually, it sucks. Watching the march of thousands of such patients, I keep thinking it must be indescribably difficult to bear if it is so difficult just to watch from the vantage point of an unrelated oncologist, who at best catches only glimpses of the struggle patients face every day.
The lump in my throat grew larger this weekend when Oliver Sacks declared that his disease had inevitably returned despite liver embolization and immunotherapy, the holy grail of melanoma treatment. Oh no, I thought glumly, not you too, as if the greatness of being Oliver Sacks were enough to outsmart rapidly dividing melanocytes. Sadly no. The venerable figure that he is, I can just about picture him telling a group of despondent young residents that it would be naive to think that a terminally ill doctor might avoid the fate of many of his patients.
Oliver Sacks dying of metastatic melanoma may have been just another story of misfortune in a world spilling over with bad news were it not for something that caught my eye towards the middle of his column. He lists symptoms of nausea, loss of appetite, chills and sweats and a pervasive tiredness, all cardinal signs of worsening cancer. He tells us he is still managing to swim although the pace is slower as he pauses to breathe. And then, he says something utterly obvious and yet, thoroughly remarkable: “I could deny it before but I know I am ill now.”
Patients who can get even part of the way to acknowledging their mortality ultimately do themselves an untold favour.
In a piece of achingly beautiful writing, this observation may bypass the typical outsider but as an oncologist, it struck me as the essence of what it takes to die well – the concession that all the well-intentioned therapy in the world can no longer prevent one from going down the irreversible trajectory of death.
This recognition allows patients to halt toxic treatment, opt for effective palliation and articulate their goals for the end of life. It permits their oncologist to open up new conversations that don’t include the latest million-dollar blockbuster therapy with a bleak survival curve but do mention the therapeutic benefit of teaming up with hospice workers to write letters, preserve photos and record memories. I would say that this candid admission from a patient is the difference between bemoaning death as a medical failure and viewing life as a welcome gift.
I found myself thinking of a former patient who came into hospital dying of liver failure from metastatic bowel cancer. Her jaundiced skin was practically glowing and she had a resulting insatiable itch. There was not a single comfortable position she could find and it soon became clear that that she needed continuous sedation for comfort. But before I sedated her I needed to be sure that she understood her terminal condition, difficult given that the liver failure was causing agitation. The problem was that her husband was permanently stationed at her bedside and would not hear of me mentioning any bad news to the patient.
He had determined that there was to be no conversation about her progressive cancer or the fact that she lay dying. Her experience was unacceptable yet the impasse dreadful and ethically troubling.
One morning her husband was delayed but she needed urgent attention so I walked in alone to find a clearly distressed patient. Looking surreptitiously around the room, and temporarily alert, she whispered, “What is happening to me?”
I sat down and held her hand, noting a trail of bleeding scratch marks.
“Do you want me to tell you?”
Before she could answer, her husband roared from behind me, “How dare you plot to scare my wife like that in my absence? Get out!”
As I covered my ears against the litany of abuse, the patient’s terrorised eyes briefly rested on mine. Sorry, they seemed to say, I am really sorry. Refusing to be mollified by the palliative care staff the man virtually dragged his dying wife home. He made a mockery of her end of life care and left me with a searing memory of my failure to help a dying patient. But I also try to remember that he loved her and just couldn’t bear the thought of letting her go. Letting go is hard.
Doctors fail patients in various ways but in some ways it is easier to fail patients when they or their family deny impending death. They are the ones who deserve our greatest consideration and patience but the truth is that it’s taxing enough to treat intractable pain, omnipresent nausea or pervasive melancholy without having to take on the onerous task of saying, “Believe me, you really are dying.”
Cancer may be the best way to die but it doesn't have to be | Ranjana Srivastava
Unlike suturing or locating a pulse, dealing with death does not become easier with time. If you care about your patient, it always hurts. It hurts when you fail to cure them and it hurts when you fail to help them die. Patients who can get even part of the way to acknowledging their mortality ultimately do themselves, their relatives and even their oncologists an untold favour.
But of course, it’s one thing to understand your mortality and quite another to articulate your feelings for the world to scrutinise. At his diagnosis Oliver Sacks wrote, “I cannot pretend I am without fear. But my predominant feeling is one of gratitude.” Those insightful words brought inspiration to untold patients.
But the doctor who brought to us the man who mistook his wife for a hat isn’t about to mistake death for what it is. Now he reminds us with all the poise and dignity we have come to expect of him that there is value in embracing our mortality, that there is an art to dying, and before he goes, he might just show us how. For this and so much more, we owe him.
On the Move: A Life
by Oliver Sacks
Knopf, 397 pp., $27.95
For more than a decade, I have taught a seminar on the literature of medicine for Harvard freshmen. We begin with Tolstoy’s The Death of Ivan Ilych, read stories by Chekhov, Turgenev, Kafka, and William Carlos Williams, and then Oliver Sacks’s An Anthropologist on Mars. His portrayals of a skilled surgeon with Tourette’s syndrome and an accomplished autistic artist with eidetic memory—the ability to “see” an object that is no longer present—cause the students to rethink “abnormal” as meaning only “abject.”
This year, I also assigned the class Sacks’s recent essay “My Own Life.”1 He had received a diagnosis of metastatic melanoma and wrote that his survival is likely measured in months. He described himself as of “vehement disposition, with violent enthusiasms, and extreme immoderation in all my passions.” A talented student drew a contrast with Ivan Ilych, who was passionless and shaped his behavior to strictly conform to others’ expectations. Tolstoy judged Ilych’s life as “most simple and most ordinary and therefore most terrible.” Sacks’s autobiography, On the Move, reveals how very different from that his life has been, and therefore most gratifying.
Sacks’s early case histories, many published in these pages, revealed little about his background. Then, in 1997, he wrote an essay on swimming.2 He recalled how his father was a champion swimmer, and the young Sacks learned by imitating his slow, measured strokes. Though he was nervous and clumsy on land, swimming involved adaptation and altered identity, two of Sacks’s great themes; in the water he “found a new being, a new mode of being.” His memories of the water brought intimations of mortality; noting that his father swam into his nineties, he ended the essay: “I hope I can follow him, and swim till I die.”
Four years later, his boyhood memoir Uncle Tungsten appeared.3 Sacks was raised in a traditional Jewish home filled with academic expectation. His father was a general practitioner, his mother one of the first qualified woman surgeons in England. The youngest of four brothers, Oliver had eclectic interests at a young age. The book highlighted his enthusiasm for chemistry, which I share, but I imagine some readers were not ready to immerse themselves deeply in the Periodic Table.
On the Move is a memoir of his maturity. It is tighter in focus, but still pulses with his distinctive energy and curiosity. The narrative conveys a sense of freedom, that Sacks has reached a time and position in which he can be humorous and self-deprecating, but also discuss fraught parts of his life: the profound love and admiration for his mother colored by her condemnation of his sexuality; his beloved brother Michael’s schizophrenia; being marginalized by a medical establishment that did not value his holistic approach to neurology; the roots of his perilous descent into drug abuse.
Early in the book, we learn how he nearly did not enter a university:
At Oxford, one had to take an exam called “prelims” for entry; it was considered a mere formality with me, because I already had an open scholarship. But I failed prelims; I took them a second time and I failed again. I took the test a third time and failed yet again, and at this point Mr. Jones, the Provost, pulled me aside and said, “You did splendid scholarship papers, Sacks. Why are you failing this silly exam again and again?” I said I didn’t know, and he said, “Well, this is your last chance.” So I took the test a fourth time and finally passed.
This would prove to be only the first such academic hurdle. Sacks nearly flunked his course in anatomy. He feared informing his mother, who as a surgeon lauded such knowledge. To allay his anxiety, Sacks got drunk:
Rolling out of the White Horse, liquored up, I was seized by a mad and impudent idea. I would try to compensate for my abysmal performance in the anatomy finals by having a go at a very prestigious university prize—the Theodore Williams Scholarship in Anatomy. The exam had already started, but I lurched in, drunkenly bold, sat down at a vacant desk, and looked at the exam paper.
There were seven questions to be answered, and he “pounced on one”: “Does structural differentiation imply functional differentiation?” For two hours, he wrote nonstop. An hour before the exam ended, he left without answering the other six questions:
The results were in The Times that weekend; I, Oliver Wolf Sacks, had won the prize. Everyone was dumbfounded—how could someone who had come one but last in the anatomy finals walk off with the Theodore Williams Prize? I was not entirely surprised, for it was a sort of repetition, in reverse, of what had happened when I took the Oxford prelims. I am very bad at factual exams, yes-or-no questions, but can spread my wings with essays.
Imagine Sacks sitting for our cascade of standardized tests that culminates in the SAT. Such educational assessments narrow students’ thinking into a binary mode, allowing scant opportunity for an expansive mind that thrives on nuance.
We thankfully live in a time when sexual orientation is more respected than it used to be, with increasing legal protections in employment and a growing affirmation of the right of gay and lesbian people to marry. Sacks emphasizes that in 1950s England, homosexuality was treated not only as a perversion but as a criminal offense. He recreates an interchange with his father on the subject:
“You don’t seem to have many girlfriends,” he said. “Don’t you like girls?”
“They’re all right,” I answered, wishing the conversation would stop.
“Perhaps you prefer boys?” he persisted.
“Yes, I do—but it’s just a feeling—I have never ‘done’ anything,” and then I added, fearfully, “Don’t tell Ma—she won’t be able to take it.”
But his father did tell her, and his mother’s reaction was damning:
The next morning she came down with a face of thunder, a face I had never seen before. “You are an abomination,” she said. “I wish you had never been born.” Then she left and did not speak to me for several days. When she did speak, there was no reference to what she had said (nor did she ever refer to the matter again), but something had come between us.
Sacks had been her favorite, her “mugwump” and “pet lamb” as a child; “now I was ‘one of those’”—a second burden added to his brother Michael’s schizophrenia. Years later he can look back kindly, but he still feels the pain:
We are all creatures of our upbringings, our cultures, our times…. My mother did not mean to be cruel, to wish me dead. She was suddenly overwhelmed, I now realize, and she probably regretted her words or perhaps partitioned them off in a closeted part of her mind.
But her words haunted me for much of my life and played a major part in inhibiting and injecting with guilt what should have been a free and joyous expression of sexuality.
In his writing on Tourette’s syndrome and the spectrum of autism, Sacks questions the arbitrary divisions society makes between sick and well. We learn here something about the origins of this sensibility. His brother Michael “sometimes called the rest of us, the non-schizophrenic world, ‘rottenly normal’ (great rage was embodied in this incisive phrase).”
Sacks’s training prepared him for a prominent career in neurology. His first brush with the perils of the medical establishment occurred when he was writing Migraine. He was working under the tutelage of a senior neurologist, Dr. Friedman, who seemed supportive:
The head of the migraine clinic was a man of some eminence called Arnold P. Friedman. He had written a good deal on the subject and he had run this clinic—the first of its kind—for more than twenty years. I think Friedman took a shine to me. He thought I was bright, and I think he wanted me to be a sort of protégé. He was friendly towards me, and he arranged for me to do more clinics than everyone else and to be paid slightly more. He introduced me to his daughter, and I even wondered whether he thought of me as a potential son-in-law.
All went well until Sacks began to write the book, emphasizing the striking individuality of each case, how no two patients were ever the same. When Friedman discovered this, he became belligerent, stating that if the work saw the light of day, he would destroy him professionally:
Who did I think I was to write a book on migraine? he demanded. What presumption! I said, “I’m sorry, it just happened.” He said that he would send the manuscript out for review, to someone very high up in the migraine world.
I was very taken aback by these reactions. A few days later, I saw Friedman’s assistant photocopying my manuscript. I didn’t pay much attention to this, but I noted it. About three weeks later, Friedman gave me a letter from the reviewer, from which all identifying characteristics of the sender had been removed. It was a letter lacking any real, constructive critical substance but full of personal and often envenomed criticism of the book’s style and its writer. When I said this to Friedman, he replied, “On the contrary, he is absolutely right. This is what your book consists of; it’s basically trash.”… He warned me not to think of going back to the book, saying that if I did, he would not only fire me but see that I never got another neurological job in America. At that time, he was chairman of the headache section of the American Neurological Association, and it would indeed have been impossible for me to get another job without his recommendation.
After much agonizing, Sacks decided not to bow to his authority and to publish Migraine. He soon received some eye-opening correspondence:
When Migraine came out, I got a couple of rather puzzled letters from colleagues asking why I had published earlier versions of some of the chapters under the pseudonym of A.P. Friedman. I wrote back, saying I had done nothing of the sort and that they should address their question to Dr. Friedman in New York. Friedman gambled foolishly on my not publishing the book, and when I did publish it he must have realized he was in trouble. I never said a word to him, and I never saw him again.
Sacks attributes Friedman’s bad behavior to a role reversal of the “youthful son-in-science” outshining “the father.” I take a less generous view. Serving on grant review committees, I have observed senior researchers who are fair and well-intentioned, but also those who slam proposals from creative investigators, then steal their ideas. Similar fratricide occurs with submitted manuscripts, with reviewers denigrating competing research so it is not published. There is an ugly side to the scientific hierarchy that comes from unchecked lust for success and fame.
We have entered a time in medicine that celebrates “big data,” as large cohorts of patients are reduced to numbers fit for meta-analysis. Rather than narrow statistical significance, Sacks sees a larger emotive dimension in each person’s condition:
Patients were real, often passionate individuals with real problems—and sometimes choices—of an often agonizing sort. It was not just a question of diagnosis and treatment.
Emotions that can be instructive and exhilarating are also sparked in the doctor:
I have never seen a patient who didn’t teach me something new, or stir in me new feelings and new trains of thought; and I think that those who are with me in these situations share in, and contribute to, this sense of adventure. (I regard all neurology, everything, as a sort of adventure!)
With this cast of mind, Sacks advanced a unique form of clinical scholarship, charting the multifaceted world of people with differences in perception and cognition. Over the past decade, he has become an eminent figure in neurology, not only among laymen but among the highest tier of scientists. The Nobel laureates Francis Crick and Gerald Edelman sought his views on the workings of the brain, specifically the nature of consciousness. He received the honor of Commander of the British Empire from Queen Elizabeth. Eminence has not brought hubris, but self-deprecating humor:
I was half-afraid that I would do something awful, like faint or fart right in front of the queen, but all went well…. She spoke to me briefly but warmly, asking me what I was working on…. It was as if she—and England—were saying, “You have done useful, honourable work. Come home. All is forgiven.”
Sacks had hoped for a life with a young, energetic man named Mel, whom he met while training in neurology at UCLA. At first, they became roommates, enjoying motorcycle excursions and exercise at the beach. There was close physical contact with wrestling, but not sex. Then, while giving a naked Mel a massage, Sacks had an orgasm. Mel left him:
I felt desperately lonely and rejected when Mel moved out, and it was at this juncture that I turned to drugs, as some sort of compensation. I rented the little house in Topanga Canyon—it was rather isolated, being at the top of an unpaved trail, and I resolved never to live with anyone again.
Despondent, he happened to smoke laced marijuana:
I took a puff, nervously, then another, and then, voraciously driven, smoked the rest, voraciously because it was producing what cannabis alone had never produced—a voluptuous, almost orgasmic feeling of great intensity. When I asked what the joint had contained, I was told that it had been doped with amphetamine….
I was hooked after that night with an amphetamine-soaked joint and was to remain hooked for the next four years. In the irresistible thrall of amphetamines, sleep was impossible, food was neglected, and everything was subordinated to the stimulation of the pleasure centers in my brain.
Sacks easily could have suffered a heart attack or stroke. With characteristic clarity, he notes, “I did and did not realize I was playing with death.”
His addiction continued after he moved to New York, where he entered psychoanalysis with Dr. Shengold:
I was still half-psychotic at times from the amphetamines I had not yet kicked. Thinking of my schizophrenic brother, Michael, I asked Shengold if I too was schizophrenic.
“No,” he answered.
Was I then, I asked, “merely neurotic”?
“No,” he answered.
I left it there, we left it there, and there it has been left for the last forty-nine years.
The first antidote to his addiction was the reward of doctoring:
I would continue to seek satisfaction in drugs, I felt, unless I had satisfying—and, hopefully, creative—work. It was crucial for me to find something with meaning, and this, for me, was seeing patients.
As soon as I started clinical work in October of 1966, I felt better. I found my patients fascinating, and I cared for them. I started to taste my own clinical and therapeutic powers and, above all, the sense of autonomy and responsibility which I had been denied when I was still a resident in training. I had less recourse to drugs and could be more open to the analytic process.
Then there was a second reward:
I had one more drug high or mania in February of 1967, and this—paradoxically and unlikely all my previous highs—took a creative turn and showed me what I should and could do: to write a worthwhile book on migraine, and perhaps other books after this. It was not just a vague feeling of potential but a very clear, focused vision of future neurological work and writing which came to me when I was high but then stayed with me.
Sacks “never took amphetamines again—despite sometimes-intense longings for them.” And with his emotions “no longer out of reach,…analysis could get somewhere.”
I have long been fascinated by Sacks’s distinctive style of writing, particularly his affection for adjectives. Instead of mere repetition, each adjective enhances the breadth of the described subject. Where did this nuanced sensibility originate?
My mother was a natural storyteller. She would tell medical stories to her colleagues, her students, her patients, her friends. And she had told us—my three brothers and me—medical stories from our earliest days, stories sometimes grim and terrifying but always evocative of the personal qualities, the special value and valor, of the patient. My father, too, was a grand medical storyteller, and my parents’ sense of wonder at the vagaries of life, their combination of a clinical and a narrative cast of mind, was transmitted with great force to all of us. My own impulse to write—not to write fiction or poems, but to chronicle and describe—seems to have come directly from them.
In Uncle Tungsten, Sacks describes a home filled with Jewish celebrations. As the youngest child, he asked the Four Questions at the seder, and searched for the hidden half-middle matzah, the afikomen. He also adored Sukkot, the autumn harvest holiday, and his interest in horticulture was directed toward adorning the sukkah with branches and leaves. He is no longer observant, but Sacks appreciates certain psychological benefits of ritual. After his mother’s death,
I wondered how I would feel about sitting shiva. I did not know if I could bear it, sitting all day on a low stool with my fellow mourners for seven days on end, receiving a constant stream of people, and talking, talking, talking endlessly of the departed. But I found it a deep and crucial and affirmative experience, this total sharing of emotions and memories, when, alone, I felt so annihilated by my mother’s death….
As they spoke of her, I was reminded of my own identity as a physician, teacher, and storyteller and how this had brought us closer, adding a new dimension to our relationship, over the years. It made me feel too that I must complete Awakenings as a last tribute to her. A strange sense of peace and sobriety, and of what really mattered, a sense of the allegorical dimensions of life and death, grew stronger and stronger in me with each day of the mourning…. And in this mood, I wrote the later, more allegorical sections of Awakenings, with a feeling, a voice I had never known before.
Reading On The Move and knowing that Sacks is facing a terminal illness heightens certain parts of the book. He became a close friend of the evolutionary biologist Stephen J. Gould. Sacks writes that Gould “had had a brush with death before I met him,” from mesothelioma, a rare and typically fatal cancer, but “was determined to beat the odds and survive.” After this experience, Gould became more productive than ever. “There was not a minute to waste; who knew what might happen next?” Sacks echoes this in his recent essay in The New York Times. “I feel a sudden clear focus and perspective. There is no time for anything inessential.”
There was an essential part of Sacks’s life that was long absent. Then, at the age of seventy-seven, he fell in love with the writer Billy Hayes. They now share a domestic life:
It has sometimes seemed to me that I have lived at a certain distance from life…. 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 fears, enter one’s life—the need for another, the fear of abandonment. There have to be deep, mutual adaptations.
Oliver Sacks inspired my efforts as a physician-writer, as he has for so many others. I am, in a sense, one of his students. Now, in settings like my seminar, his work inspires the next generation to think and create. I will add On the Move to our reading list. His writing, like the light from a distant star, will continue to illuminate the lives of his readers, long after its source is extinguished.