No story has gripped me more than the real-life “sleeping beauty” story that Oliver Sacks tells in his magnificent book, Awakenings. For years I have been fascinated by the symmetry between his experience of patients with encephalitis lethargica and the fairy tale, “The Briar Rose.” The myth and the patients’ experience prompt us to ask “What does it mean to truly awaken?” and Dr. Sacks offers a profound response.
This article comes from a presentation I made several years ago to the Joseph Campbell Roundtable in Toronto, which also included excerpts from the documentary that was filmed in the mid 1960s when his patients “awakened.”
Between the years 1915 and 1927 a strange pandemic swept round the world. Known as encephalitis lethargica, the virus put five million people to “sleep” and then disappeared in 1927 just as mysteriously as it had appeared.
Its victims fell into states of profound numbness and immobility. A third of those affected died in comas, and those who lived could not recover their vitality. While conscious and aware, they were not awake.
Those who recovered attempted to go back to normal life but soon developed Parkinsonian syndromes. Their limbs were overtaken by a repetition of movements and tics over which they had no control, and they eventually fell back into entranced, immobilized states. Their families couldn’t care for them, and they were institutionalized.
Many years passed, and then in 1966, Oliver Sacks went to work at Beth Abraham Hospital in New York. The hospital had been founded shortly after the First World War to care for people who suffered from nervous system disorders, especially those who had succumbed to encephalitis lethargica.
When Dr. Sacks came the hospital, there were about eighty people who were still living in this strange, entranced state. In Awakenings, he describes the condition of most of the patients:
“They would sit motionless and speechless all day in their chairs; totally lacking energy, impetus, initiative, motive, appetite, affect, or desire; they registered what went on about them without active attention, and with profound indifference. They neither conveyed nor felt the feeling of life; they were insubstantial as ghosts, and as passive as zombies…” (14, Awakenings.)
Dr. Sacks regarded one of the patients, Rose R., as a real life “Sleeping Beauty.” Born in New York city in 1905, she was the youngest child of a large, wealthy, talented family. She had a healthy, energetic nature and loved airplanes. She flew to a number of cities in the U.S., including Pittsburgh, Denver, New Orleans, and Hollywood. She went to parties and shows, rolled home drunk at night, and liked to paint the bridges and waterfronts of New York. As Dr. Sacks put it, she lived in a “blaze of her own vitality.” (74, Awakenings.)
Then, at twenty-one, she went to bed one night and in the morning her family couldn’t rouse her. When she did come to, she was still and strange. She said that she had had nightmares. She dreamed of being imprisoned in an inaccessible castle with the form and shape of herself. She dreamed of becoming enchanted, bewitched—turned to stone. The world had come to a stop, and she had fallen into a sleep so deep that no one could wake her. When she turned her eyes to the wardrobe mirror, she saw that her dreams had come true.
The family called the doctor. He named her condition “catatonia” and suggested that, given the life she’d been leading, she’d probably had her heart broken by some “bum.” “Keep her quiet and feed her,” he said. “She’ll be fine in a week.”
But she didn’t recover. For the next forty-three years, she remained in a state of fixed concentration—immobilized and alert, but aware of nothing.
One of her sisters said, “She looked as if she were trying her hardest to remember something—or maybe doing her damnedest to forget something. Whatever it was, it took all her attention.” (75, Awakenings.)
Three or four years after her trance state took hold, the left side of her body became rigid. She started to lose her balance while walking and developed other signs of Parkinsonism.
After her siblings left home, her aging parents admitted her to Beth Abraham hospital. When Dr. Sacks came to the hospital in 1966, she had been there for thirty years.
An old staff nurse, who had been with her through the duration said, “It’s uncanny, that woman hasn’t aged a day in the thirty years I’ve known her. The rest of us get older—but Rosie’s the same.” At sixty-one she looked thirty-one. With raven black hair and an unlined face, she seemed to have been magically preserved. She sat in her wheelchair for hours on end, motionless and unblinking. Her face was completely expressionless. She whispered with effort and couldn’t rise to her feet unaided, though with assistance she could take a few small, shuffling steps. (77, Awakenings.)
Dr. Sacks asked her what she was thinking about.
“Nothing,” she said.
“How can you possibly be thinking of nothing?”
“It’s dead easy, once you know how.”
“How exactly do you think about nothing?”
“One way is to think about the same thing again and again. Like 2=2=2=2; or I am what I am what I am what I am.” (76, footnote, Awakenings.)
Attempts at Salvation
In the spring of 1969, Dr. Sacks attempted to free Rose and the other patients from the grip of their disease, and his means was an experimental drug known as “L-Dopa.” Celebrated as a “miracle drug” for people suffering from Parkinsonian syndromes, it had been known to produce remarkable results when administered in high doses.
Dr. Sacks received approval from the FDA to try the drug on patients with encephalitis lethargica and began administering it in the summer of 1969. To his amazement, the patients volcanically erupted to life. The placid atmosphere in the hospital was transformed in a way that was so remarkable the doctor wanted to spend every waking hour witnessing and documenting their return to the world. It was an event of “almost geological proportions,” he wrote, “an explosive ‘awakening,’ of eighty or more patients who had long been regarded, and regarded themselves, as effectively dead.” (xxv, Awakenings.)
For these long-suffering people, time started again. Rose began to take L-Dopa on June 18, 1969, and within days, Dr. Sacks reported: “Miss R. is able to walk unaided down the passage, shows a distinct reduction in rigidity in the left arm and elsewhere, and has become able to speak at a normal conversational volume.” A week later, Rose was still improving. One day, at lunchtime, she called to him: “Dr. Sacks! I walked to and from the new building today … It’s fabulous! It’s gorgeous!” For ten days she was joyous, elated, and salacious. She sang songs and told jokes from the 1920s. Using a tape recorder, she recorded songs of “astonishing lewdness,” Dr. Sacks remarked, along with reams of light verse. (82, Awakenings.)
Strangely, Rose kept alluding to figures current in her day. She knew perfectly well it was 1969 and that she was sixty-four years old, but she felt that it was 1926 and she was twenty-one. She couldn’t imagine being older than twenty-one, because she had never really experienced any of the time in between.
Rose’s vivacity carried on for several weeks, but at the end of July she said, “Something awful is coming. God knows what it is, but it’s as bad as they come.”
Only a few hours after making that chilling prediction, Rose started ticcing. Her movements became jammed and her speech broke up, damned and “crashed in on itself.” Dr. Sacks tried to adjust her medication but she couldn’t walk without freezing up. She would rush forward several steps and jam, and her frustration only made things worse. She couldn’t stop her right hand from hitting her chin, and her right finger scratched incessantly in tight little circles, gouging the skin. (84, Awakenings.)
Dr. Sacks did everything he could to adjust the dosage of the drug, but higher doses became less and less effective. After only a few weeks, Rose fell back into her strange, pathological state. In a fundamental sense,” he Sacks wrote, “she … is a Sleeping Beauty whose ‘awakening’ was unbearable to her, and who will never be awoken again.” (87, Awakenings.)
Caught in Thorns
Reflecting on his patients’ experience of the drug, Dr. Sacks said: “For a certain time, in almost every patient who is given L-Dopa, there is a beautiful, unclouded return to health; but sooner or later, in one way or another, almost every patient is plunged into problems and troubles.” (243, Awakenings.)
At first, the person enjoyed a “perfection of being,” an ease of movement and feeling and thought, a harmony of relation within and without. Within a matter of weeks, the effectiveness of L-Dopa diminished while the need for the drug increased and the person was caught in the vicious cycle of addiction. The happy state would “crack, slip, break down, and crumble,” and the person would “move towards perversion and decay.” (247, Awakenings)
The first sign of returning disease was the sense that something was going very wrong. Then the patient became restless, driven by tics, urges, and impulses that were hectic, fervid, ardent, maniacal, passionate, greedy and frenzied. Finally the person could no longer tolerate the drug, and crashed.
The problem was not just the drug, but also a problem of what Dr. Sacks called “accommodation.” How was it possible for people who had not lived in time for forty years to accommodate their reality? The predicament was especially difficult for people like Rose R. who were deeply unreachable. When Dr. Sacks first met Rose he had never seen a patient “whose regard was so turned away from the world, and so immured in a private, inaccessible world of her own.” He worried about attempting a cure, recalling something that James Joyce wrote about his daughter who suffered a mental illness: “….fervently as I desire her cure, I ask myself what will happen when and if she finally withdraws her regard from the lighting-lit reverie of her clairvoyance and turns it upon that battered cabman’s face, the world …” (79, Awakenings.)
The patients who woke with the help of the drug enjoyed a short period of elation but as the euphoria wore off, they were faced with the reality that they had lost time and history. They were confined to an institution, isolated, and separated from friends and family. To make things worse, when Dr. Sacks left the hospital during the month of August, the administration introduced a more regimented, institutional program. The patients had to submit to degrading rules and regulations. They felt like prisoners, dehumanized, ground up in a machine, and betrayed by the doctor and his miracle drug.
It was a nightmarish period, but some patients found a way to meet and integrate their reality, and these remarkable people profoundly informed Dr. Sacks about the true nature of awakening. One of those people was Francis D.**
Francis contracted the virus in 1919 when she was fifteen years old. She suffered intense insomnia, restlessness, fidgeting, impulsiveness. After the initial symptoms subsided, she started having respiratory crises, and her eyes would uncontrollably shoot upward, or downward, and jam.
This went on for twenty-five years while she valiantly pursued a career as a legal secretary. Then in 1949 she had to give up her career because she had started to freeze. “I cannot start and I cannot stop. Either I am held still or I am forced to accelerate. I no longer seem to have any in-between states.” she said. (40, Awakenings.) In these frozen states, her face would assume a fixed scared, angry expression. Her thoughts also seemed to “stick.” By the time she came to the hospital she was doubled over.
She received L-Dopa in June, 1969. After five days, she was crocheting, washing clothes, and writing letters. She felt an increased sense of well-being. She had energy, voice, and mobility. She could straighten up, walk with less freezing, and take longer strides.
Her breathing became a problem, though. “I have to think about my breath … I am forced to gasp.” The problem worsened. She would gasp like a drowning person coming up for air and then get stuck. She couldn’t catch another breath, sometimes for up to a minute. Dr. Sacks wanted to discontinue the drug, but she insisted on persisting. By the end of July she was struggling. She couldn’t get her feet to move. They “attached themselves” to the ground. Then they would be released quite suddenly after ten minutes. She was alarmed, annoyed, and amused by this new experience. “It’s like my feet … have a will of their own,” she said. “I was glued there, you know. I felt like a fly caught on a strip of fly-paper.” (50, Awakenings.)
Then she developed a compulsion to gnaw, chew, and growl like a dog with a bone. This behavior coming from such a refined elderly lady was embarrassing. “I could be a distinguished maiden-aunt,” she said. “And now look at me! I bite and chew like a ravenous animal, and there’s nothing I can do about it.” (51, Awakenings.)
On the good days, she felt alive and peaceful. But then she’d plunge back into crises even worse than the ones that came before. She was locked into a violent battle with herself. When her arms flew up and froze in strange positions she would cry in a piercing voice: “My arms, my arms, my arms, my arms, please move my arms, my arms, move my arms!” Her anguish and terror would mount until shame overwhelmed her and she would scream, “Oh, oh, oh…. I’m not myself, not myself…. It’s not me, not me, not me at all.” After massive dosages of barbiturates, she would fall into a few minutes of exhausted sleep. On July 31 she fell into an almost comatose state. Then, after twenty-four hours, she woke painfully depressed and whispered, “That stuff should be given its proper name—HELL-Dopa!” (52, Awakenings.)
The speech pathologist noted that she looked like “someone who has come back from the front line, like a soldier with shell-shock.” She was not able to perform any of the activities of daily life without nursing help. When Dr. Sacks returned to the hospital in September, he hardly recognized the “pale, shrunken, and somehow caved-in figure of Miss D.” She had also aged alarmingly, as if she had “fallen through another half-century in the month I was away.” (53, Awakenings.)
All through her experience, Francis kept a diary. She observed her own intense feelings of astonishment, rage, and terror. She wanted to understand what was happening to her, and why.
She said the drug had taken her higher and higher, to an impossible height, and then on a pinnacle a million miles high, she shot down in the other direction “until I was buried a million miles deep in the ground.” She felt that she had fought a heroic battle to stay on the drug, but she had lost. The failure seemed like a death sentence, yet she was not willing to dismiss her violent compulsions and primitive appetites as purely physical and alien to her real self.
She wanted to understand what her compulsions were. They seemed to be, in Dr. Sacks’ words, “releases or exposures or disclosures or confessions of very deep and ancient parts of herself, monstrous creatures from her unconscious and from unimaginable physiological depths below the unconscious, pre-historic and perhaps pre-human landscapes whose features were at once utterly strange to her, yet mysteriously familiar, in the manner of certain dreams.” (55, Awakenings, his italics.)
She also examined her relationship with the doctor. She had seen him as her Redeemer, promising health and life with his sacramental medicine. When the medicine failed, she saw him as the Devil, confiscating health and life, and thrusting her into something worse than death. During the period after the doctor left the hospital, Francis plunged into a “sort of Purgatory,” a subterranean time of deep reflection and inner changes. (57, Awakenings.)
Using all her recently acquired self-knowledge, Francis applied the full strength of her mind and character to achieve a “new unification and stability, deeper and stranger than anything preceding it.” She de-invested in L-Dopa, renouncing her passionate hopes. Denying nothing, pretending nothing, expecting nothing, and retaining a detached sense of humor, she “turned away from her phantasies, and towards her reality …” (See pp. 58-62, Awakenings)
She ceased to envy the other patients their highs or to be terrified of their lows. She stopped seeing the doctor as her Redeemer/Destroyer. According to Dr. Sacks: “The denials, the projections, the identification, the transferences, the postures, the impostures of the L-DOPA ‘situation’ fell away like a carapace, revealing ‘the old Miss D’ – the real self – underneath.” She devoted herself to doing what she could with regard to her condition, her relationships and “the business of staying alive in a Total Institution.” (58-62, Awakenings)
Now the doctor and the staff of physiotherapists and speech therapists learned from her. Francis and the few other patients who been able to accommodate their new reality devised methods for managing their illness. Some were very practical. Francis would carry a small supply of paper balls. If she froze, she would drop one to the ground, and the tiny white ball would incite her to take a step forward and resume her normal walking pattern.
For Dr. Sacks, Francis was the survivor of a ‘character deforming disease’. “Deeply rooted in reality, she has triumphantly survived illness, intoxication, isolation, and institutionalization, and has remained what she always was—a totally human, a prime human being.” (67, Awakenings.)
In his illuminating discussion of the patients who found a way to live with the illness, Dr. Sacks makes a distinction between awakening and accommodation. “Accommodation lacks the glamour of Awakening. It lacks its sudden, spontaneous, ‘miraculous’ quality. It does not come ‘of itself’—easily and effortlessly. It is earned, worked for—with infinite effort and courage and trouble.” It is an “achievement of character, of negotiation, in its widest possible sense.” (See his footnote, 266, Awakenings.)
Referring to the words of William James, he wrote that the “accommodated” have “‘drunk too deeply of the cup of bitterness ever to forget its taste, and their redemption is into a universe two-storeys deep.’ They are the “twice-born” who, after “bitter division, physiological and social, finally achieve a real reunion, a reconciliation of the deepest and stablest kind.” (footnote, 266, Awakenings.)
Dr. Sacks viewed his patients as explorers of deep reality whose ordeals shed light on the heroic struggle to fully wake. Through no fault of their own, they were thrust into the depths of human suffering. The few who were able to survive and find an accord with their predicaments became great teachers to their friends and caregivers. Above all, they taught Dr. Sacks the paramount importance of being present to one another in the health of every human being. He wrote, “… it is human relations which carry the possibilities of proper being in-the-world. Feeling the fullness of the presence of the world depends on feeling the fullness of another person, as a person; reality is given to us by the reality of people; reality is taken from us by the unreality of un-people…” (272, Awakenings.)
“One sees that beautiful and ultimate metaphysical truth…that Eros is the oldest and strongest of the gods; that love is the alpha and the omega of being; and that the work of healing, of rendering whole, is, first and last, the business of love.” (273, Awakenings.)
* Rose is a pseudonym.
** Francis D. is a pseudonym.
Images by Arthur Rackham
Photo of Dr. Sacks with a patient.