Awakenings, Oliver Sacks. London: Picador, 1991.
Summary: Chronicles the experience of post-encephalitis patients existing as prisoners in their own bodies in a trance-like state, who, when treated with L-DOPA, experienced dramatic “awakenings” nearly always followed by debilitating side effects, often resulting with withdrawal of the drug, and a return to their former state.
From 1916 to 1927, there was an epidemic of encephalitis lethargica, or “sleeping sickness.” The sickness often resulted in a period of profound lethargy, sometimes ending in a return to normal or nearly normal life. A number of patients experienced symptoms of Parkinsonism, leading to increasing paralysis and necessitating institutionalization. Many lived as prisoners in their own bodies, limited in movement and speech.
Oliver Sacks, in this book chronicles his work with a group of such patients, some institutionalized for as long as forty years in Mount Carmel Hospital in New York. During the time that he was caring for them, a new drug, L-DOPA, began to be used with great effect on Parkinson’s patients, and since these patients symptoms were similar, Saks, and other attempted to use the drug with them with dramatic, and ultimately, troubling, effects.
After introductory chapters on Parkinsonism, sleeping sickness, Mount Carmel, and L-Dopa, he describes the patient history of twenty patients who he treated with this drug. It turns out they responded very differently than Parkinson’s patients. Nearly all of them experienced “awakenings” where they regained the ability to move and speak. One patient, Leonard L. described the experience as follows:
“I feel saved. . . I feel like a man in love. I have broken through the barriers which cut me off from love. . . . I have been hungry and yearning all my life, . . . and now I am full. Appeased. Satisfied. I want nothing more. . . . L-DOPA is a blessed drug, it has given me back the possibility of life. It has opened me out where I was clammed tight shut before. . . . If everyone felt as good as I do, nobody would think of quarrelling or wars. Nobody would think of domination or possession. They would simply enjoy themselves and each other. The would realize that Heaven was right here down on earth.”
Sadly, with few exceptions, these awakenings did not last but turned into wide awake nightmares. Coherent speech would become rushed faster and faster, and degenerate into repeating of words or phrases. “Tics” would appear and become debilitating. Movement would accelerate to the point that the person could harm themselves. Psychological changes occurred as well and a normal personality would generate into mania.
The histories describe the heart-wrenching efforts to bring these symptoms under control by reducing dosages. Sometimes things were so bad that they had to withdraw the drug, leading to a return to a trance-like or coma-like state. He also describes three stages he observed patients going through: awakening, tribulation (side effects is too mild to describe this stage) and accommodation. Some are able to resume L-DOPA, and some not. What is striking is how they come to terms with their dashed expectations and suffering. Leonard writes, “I am a living candle. I am consumed that you may learn. New things will be seen in the light of my suffering.”
Sacks also observes how significant the human connection is with his patients, and how they do significantly better when there is at least one person in their lives with whom they connect, whether someone on the ward, or a family member or friend. For one patient, the chance to cobble shoes again enhanced his physical well-being and checked his descent into profound Parkinsonism.
He concludes with some profound reflections on the nature of disease and the human personality. Sacks then includes series of fascinating appendices at the end of the book exploring the history of “sleeping sickness,” the past experiences of “miracle drugs,” and the electrical basis of awakenings. Two of the most fascinating were his studies of the different perceptions of space and time of his patients, and the application of chaos theory to understanding patient responses to L-DOPA, which did not follow any orderly progression.
The last appendix is an account of the various radio, stage, and screen adaptations of Awakenings. Most notable is his description of working with actors Robert De Niro and the late Robin Williams and director Penny Marshall on the film version of Awakenings. He pays a wonderful tribute to their craft in getting “inside” what it was like to be one of these patients and the portrayal of fifteen “awakenings” at once and the chaos, brilliantly choreographed by Marshall.
Sacks gives us a narrative that helps us understand the often heartbreaking process of medical research, where advances and setbacks often come together, and where, more than science, the bond between doctors and other caregivers and patients remains paramount, whether treatments effect cure or not. Through one rare condition, Saks gives us a lens into the human condition we all share.