by Oliver Sacks
When Faber & Faber delayed publication of Migraine, I grew more and more frustrated, and Carmel, seeing this, stepped in decisively.
“You must get an agent,” she said. “Someone who will stand up for you, who won’t let you be screwed.”
It was Carmel who introduced me to Innes Rose, the agent who put pressure on my publishers to release the book. Without Innes, without Carmel, Migraine might not have seen the light of day.
Carmel returned to New York in the mid-1970s, after her mother’s death, and got an apartment on East Sixty-Third Street. She acted as a sort of agent for me and for Aubrey, who was involved then in a series of books and television programs on the history of the Jews. But neither agenting nor acting, both part-time, could pay Carmel’s rent in an ever more expensive New York, so Aubrey and I made up the shortfall together and continued to do so for the next thirty years.
Carmel and I saw a lot of each other in those years. We often went to plays together, and one play we saw was Wings, in which Constance Cummings played an aviatrix who loses language after a stroke. Carmel turned to me at one point and asked if I did not find her performance deeply moving and was taken aback when I said no.
Why not? she demanded. Because, I replied, her speech sounded nothing like the speech of people with aphasia.
“Oh, you neurologists!” Carmel said. “Can’t you forget your neurology for a while and let yourself be swept along by the drama, the acting?”
“No,” I said. “If the language sounds nothing like aphasia, then the whole play seems unreal to me.” She shook her head at my narrow-mindedness and intransigence.5
Carmel was excited when Awakenings was taken up by Hollywood and I met Penny Marshall and Robert De Niro. But her instinct played her wrong on my fifty-fifth birthday, when De Niro attended my party on City Island and (in the invisible way he has) managed to come to my little house and ensconce himself quietly upstairs without anyone recognizing him. When I told Carmel that De Niro had arrived, she said, very loudly, “That’s not De Niro. He’s a look-alike, a double, sent by the studio. I know what a real actor is like, and he doesn’t take me in for a minute.” She knew how to project her voice, and everyone heard her comment. I myself became uncertain and went down to the phone box on the corner, where I phoned De Niro’s office. Puzzled, they said of course that was the real De Niro. And no one was more amused than De Niro himself, who had heard Carmel’s bellowing.
—
Dear, monstrous Carmel! I enjoyed her company—when she was not infuriating me. She was brilliant, funny, a wickedly talented imitator; she was impulsive, ingenuous, feckless, but she was also a fantast, a hysteric, and a leech, always sucking more and more money from everyone around her. She was a dangerous houseguest (I learned later), swiping art books from her hosts’ libraries and selling them to secondhand bookshops. I often thought of our Auntie Lina, who blackmailed rich people to give money to the Hebrew University. Carmel never blackmailed anyone, but she resembled Lina in a number of ways: she too was a monster, hated by some of the family, but someone I had a soft spot for. Carmel was not unaware of the resemblance.
When Carmel’s father died, he left the bulk of his estate to her, because he recognized that she was the neediest of the children. Any resentment her brothers and sister felt was partly balanced by the feeling that now, with her patrimony, she was set for life, provided she lived sensibly and avoided follies or extravagance; she would no longer have to scrounge or be supported by them. I too was pleased that I would no longer feel obliged to send her a monthly check.
But she had other ideas; she had missed being a part of the theater world since David’s death. Now she had money and could produce, direct, and act in a favorite play herself; she chose The Importance of Being Earnest, which would allow her to star as Miss Prism. She rented a theater, assembled a cast, and organized publicity, and, as she hoped, the performance was a success. But then, in the mysterious way things happen, there was no follow-up. She had blown every cent of her inheritance in a single mad, idiotic gesture. The family was enraged, and she was, once again, broke.
Carmel took it all rather cheerfully, even though it was, in a sense, a repetition of what happened with John Gabriel Borkman thirty years before. But she was less resilient now. She was seventy, though she looked younger; she had diabetes, which she was careless with; and the family (except for Aubrey, who always stood by her, however much she infuriated him) was no longer on speaking terms with her.
Aubrey and I resumed our monthly checks, but something, at a deeper level, was broken inside Carmel. She felt, I think, that she had had her last chance for Broadway glory and stardom. Her health deteriorated, and this forced her into an assisted-living residence. She sometimes became delusional, whether from incipient dementia or diabetes or both, and she was occasionally found, disheveled and disoriented, wandering the streets near the Hebrew Home. At one point, she was convinced she was starring with Tom Hanks in a movie directed by Steven Spielberg.
But there were other days without mishaps, when she enjoyed outings to the theater—her first and last love—and walks in the lovely Wave Hill gardens, close to the Hebrew Home. She decided at this point to write an autobiography; she wrote easily and well and had an unusual, exotic life story to tell. But her autobiographic memory was beginning to fail her, as the dementia stealthily advanced.
Her “performance” memory, her actor’s memory, in contrast, was untouched. I had only to prompt her with the beginning of any Shakespeare speech and she would continue the speech, becoming Desdemona, Cordelia, Juliet, Ophelia, whoever—completely taken over by the character she was enacting. The nurses, who usually saw her as an ill, demented old woman, were stunned by these transformations. Carmel once said to me that she had no identity of her own, only those of the characters she played—this was an exaggeration, for she had plenty of character and ego in her earlier days—but now, with the leaching of her own identity by dementia, this was almost literally the case; she only came to, became a full person, in those minutes when she became Cordelia or Juliet.
The last time I visited, she had pneumonia; her breathing was fast, irregular, rasping. Her eyes were open but unseeing; she did not blink when I waved a hand near them, but I thought that perhaps she might still hear and recognize a voice.
I said, “Good-bye, Carmel,” and a few minutes later she was dead. When I phoned her brother Raphael to tell him of her death, he said, “God rest her soul—if she had one.”
—
Early in 1982, I received a packet from London containing a letter from Harold Pinter and the manuscript of a new play, A Kind of Alaska, which, he said, had been inspired by Awakenings. In his letter, Pinter wrote that he had read Awakenings when it originally came out in 1973 and had thought it “remarkable.” He had wondered about its dramatic possibilities, but then, seeing no clear way to go forward, he had put the subject out of his mind, until it suddenly came back to him eight years later. He had awoken one morning the previous summer with the first words of the play clear and pressing in his mind: “Something is happening.” The play had then rapidly “written itself,” he said, in the days that followed.
A Kind of Alaska is the story of Deborah, a patient who has been in some deeply strange, inaccessible frozen state for twenty-nine years. She awakens one day and has no idea of her age or what has befallen her. She thinks the grey-haired woman near her is some sort of cousin or “an aunt I never met,” and the revelation that this is her younger sister shocks her into the reality of her situation.
Pinter had never seen our patients or the documentary of Awakenings, though my patient Rose R. had clearly been the model for his Deborah. I imagined Rose reading the play and saying, “My God! He’s got me.” I felt Pinter had somehow perceived more than I had written; he had divined, inexplicably, a deeper truth.
In October of 1982, I went to the play’s opening at the National Theatre in London. Judi Dench gave a remarkable performance as Deborah. I was amazed
at this, as I had been amazed at the verisimilitude of Pinter’s conception, for Dench, like Pinter, had never met a postencephalitic patient. Indeed, she said, Pinter had forbidden her to do so as she prepared for her role; he felt that she should create the character of Deborah entirely from his lines. Her performance was gripping. (Later, however, Dench did see the documentary and visit some of the postencephalitics at the Highlands Hospital, and I felt that her performance after this, while perhaps more realistic, was less gripping. Perhaps Pinter was right.)
Up to this point, I had had reservations about dramatic representations or anything else “based on,” or “adapted from,” or “inspired by” my own work. Awakenings was the real thing, I felt; anything else would surely be “unreal.” How could it be real if it lacked direct firsthand experience with the patients? Yet Pinter’s play showed me how a great artist can re-confer, reimagine, reality. I felt Pinter had given me as much as I gave him: I had given him a reality, and he had given me one back.6
—
In 1986, I was in London when I was approached by the composer Michael Nyman—how would I feel, he asked, about a “chamber opera” based on the title story of The Man Who Mistook His Wife for a Hat? I said I could not imagine such a thing, and he replied that I had no need to; he would imagine it. He had in fact already done so, for the next day he presented me with a score and spoke of a librettist he had in mind, Christopher Rawlence.
I spoke with Chris at length about Dr. P. and finally said that I could not agree to an opera without the approval of his widow. I suggested to Chris that he meet her and gently enquire how she might feel about a possible opera (both she and Dr. P. had been opera singers themselves).
Chris went on to form a very warm, cordial relationship with Mrs. P., and she plays a much larger role in the opera than she does in my account. Nonetheless, I was very tense when the opera was first performed in New York. Mrs. P. came to the opening, and I kept glancing at her, fearfully misinterpreting every expression on her face. But after the performance, she came up to the three of us—Michael, Chris, and me—and said, “You have done honor to my husband.” I loved that; it made me feel we had not taken advantage of him or misrepresented his situation.
—
In 1979, two young film producers, Walter Parkes and Larry Lasker, approached me. They had read Awakenings a few years earlier in an anthropology class at Yale and hoped to turn it into a feature film. They visited Beth Abraham and met many of the postencephalitic patients, and I agreed to let them develop a script. Several years then passed in which I heard nothing.
I had nearly forgotten about the project when they contacted me again eight years later, saying that Peter Weir had read Awakenings and the script inspired by it; he was very interested in directing it. They sent me the script, written by a young writer called Steve Zaillian, and this arrived on Halloween in 1987, the day before I was due to meet Peter Weir. I hated the script, especially an invented subplot in which the doctor figure falls in love with a patient, and I said so, in no uncertain terms, to Weir when he arrived. He was taken aback, understandably, though he understood my position. A few months later, he withdrew from the project, saying that he saw all sorts of “reefs and shoals” and did not feel he could do it justice.
Over the next year, the script went through many refinements, as Steve, Walter, and Larry worked to produce something which would remain true to the book and the patients’ experiences. Early in 1989, I was told that Penny Marshall would direct the film and that she would be visiting me with Robert De Niro, who would play the patient Leonard L.
I was not quite sure how I felt about the script, for while in some ways it aimed at a very close reconstruction of how things had been, it also introduced several subplots which were entirely fictional. I had to renounce the notion that it was, in any way, “my” film: it was not my script, it was not my film, it would largely be out of my hands. It was not entirely easy to say this to myself, and yet it was also a relief. I would be able to advise and consult, to ensure medical and historical accuracy; I would do my best to give the film an authentic point of departure, but I would not have to feel responsible for it.7
—
Robert De Niro’s passion to understand what he is going to portray, to research it in microscopic detail, is legendary. I had never before witnessed an actor’s investigation of his subject—the investigation that would finally culminate in the actor’s becoming his subject.
By 1989, nearly all the postencephalitic patients at Beth Abraham had died, but there were still nine remaining at the Highlands Hospital in London. Bob felt it important to visit them, so we went to see them together. He spent many hours talking with the patients and making research tapes which he could study at length. I was impressed and moved by his powers of observation and empathy, and I think the patients themselves were moved by a sort of attention they had rarely met before. “He really observes you, looks right into you,” one of them said to me the following day. “Nobody’s really done that since Dr. Purdon Martin. He tried to understand what was really going on with you.”
On my return to New York, I met Robin Williams, who was to play the doctor—me. Robin wanted to see me in action, interacting with the sorts of patients I had worked and lived with in Awakenings, so we went off to the Little Sisters of the Poor, where there were two postencephalitic patients on L-dopa whom I had followed for several years.
A few days later, Robin came with me to Bronx State. We had spent a few minutes in a very disturbed geriatric ward, where half a dozen patients were shouting and talking bizarrely all at once. Later, as we drove away, Robin suddenly exploded with an incredible playback of the ward, imitating everyone’s voice and style to perfection. He had absorbed all the different voices and conversations and held them in his mind with total recall, and now he was reproducing them, or, almost, being possessed by them. This instant power of apprehension and playback, a power for which “mimicry” is too feeble a word (for they were imitations full of sensitivity, humor, and creativity), was developed to an enormous degree in Robin. But it constituted, I came to think, only the first step in his actorial investigation.8
I was soon to find myself the subject of his investigation. After our first few meetings, Robin began to mirror some of my mannerisms, my postures, my gait, my speech—all sorts of things of which I had been hitherto unconscious. It was disconcerting to see myself in this living mirror, but I enjoyed being with Robin, driving around, eating out, laughing at his incandescent, rapid-fire humor, impressed by his wide range of knowledge.
A few weeks later, as we were chatting in the street, I got into what I am told is a characteristic pensive pose, and I suddenly realized that Robin was in exactly the same posture. He was not imitating me; he had become me, in a sense; it was like suddenly acquiring a younger twin. This disquieted both of us a bit, and we decided that there needed to be some space between us so that he could create a character of his own—based on me, perhaps, but with a life and personality of its own.9
—
I took the cast and crew to Beth Abraham several times to get the atmosphere and mood of the place, and most especially to see patients and staff who remembered the events of twenty years before. At one point, we invited all of the doctors, nurses, therapists, and social workers who had worked with the postencephalitics in 1969 for a sort of reunion. Some of us had long since left the hospital, and some of us had not seen each other for years, but that evening in September we swapped memories of the patients for hours, each person’s memories triggering others. We realized again how overwhelming, how historic that summer had been, and equally how funny, how human its events. It was an evening of laughter and tears, nostalgia and sobriety, as we looked at each other and realized that twenty years had passed and that almost all of those extraordinary patients were now dead.
All, that is, save one—Lillian Tighe, who showed such eloquence in the documentary film. Bob, Robin, Penny, and I visited her, and we all marveled at her
toughness, her humor, her lack of self-pity, her realness. She had retained, despite advancing disease and unpredictable reactions to L-dopa, all of her humor, her love of life, her spunkiness.
I spent a great deal of time on the set of Awakenings during the months of filming. I showed the actors how parkinsonian patients sat, immobile, with masked face and unblinking eyes; the head perhaps pulled backwards or torqued to one side; the mouth tending to hang open, a little spittle perhaps hanging from the lips (drooling was felt to be difficult, and perhaps too ugly, for the film, so we did not insist on this). I showed them common dystonic postures of hands and feet; I demonstrated tremors and tics.
I showed the actors how parkinsonian patients stood, or tried to stand; how they walked, often bent over, sometimes accelerating and festinating; how they might come to a halt, freeze, and be unable to go on. I showed them different sorts of parkinsonian voices and noises and parkinsonian handwriting. I counseled them to imagine themselves locked in small spaces or stuck in a vat of glue.
We practiced kinesia paradoxa—the sudden release from parkinsonism by music or by spontaneous responses such as catching a ball (the actors loved practicing this with Robin, who we felt might make a great ballplayer were he not committed to acting). We practiced catatonia and postencephalitic card games: four patients would sit completely frozen, clutching hands of cards, until someone (perhaps a nurse) made a first move, which precipitated a tremendous flurry of movement; the game, first paralyzed, now finished itself within seconds (I had seen and captured just such a card game on film in 1969). The nearest thing to these accelerated, convulsive states is Tourette’s syndrome, so I brought several young people with Tourette’s to the set. These almost Zen-like exercises—becoming immobile, emptying oneself, or accelerating oneself, perhaps for hours on end—were both fascinating and frightening to the actors. They started to feel with frightful vividness what it might really be like to be stuck in this way permanently.
