See my full review at The Emerald City Book Review. Of course I've heard of Oliver Sacks, author of many books with intriguing titles (The Man Who Mistook His Wife for a Hat, An Anthropologist on Mars, Seeing Voices, etc.). But in spite of hearing that Sacks was a terrific writer about fascinating topics out of his practice as a neurologist, I managed to avoid actually reading these works for many years.
Until, while questing for something short and inspiring to read this summer, his little book Gratitude – barely even a book, just a compilation of four brief essays that originally appeared in the New York Times – caught my eye. I polished it off in an hour, was captured by the intelligent and compassionate mind that spoke there, and looked for more.
Awakenings, his second published book, was one I had heard about; I had vague impressions from when the Hollywood movie came out, with Robin Williams and Robert De Niro. I haven't seen that either, but the premise of patients coming out of a decades-long pathological “sleep” sounded interesting. So I checked it out and dove in.
The edition I read in e-book form is the latest of many incarnations. A preface explains some of the transformations the book has gone through: adding footnotes, removing them, putting them back in again; going back to the original stories after further developments; weaving in further developments in neurology, science, and medicine, including chaos theory; adding notes on the stage and film incarnations of the story; and more.
It's an unwieldy mass of material, and exactly the kind of book I prefer to read in print versus the electronic version. With all the footnotes, cross-referencing, and a glossary of medical terms, it would have made it much easier to flip back and forth, and to maintain awareness of the place of the parts within the whole. If it hadn't been such a fascinating story at the core, I probably would have gotten frustrated and given up. Probably I will buy a print copy, because I want to go through it again and take it in more thoroughly.
“When is she going to get to that actual story?” you are probably asking. Yes, like Sacks, I am making you wade through a lot of prefatory and explanatory material – probably because that's how I experienced the book. Pushing all this aside, at the core are twenty case studies of individuals who went through a bizarre, little-remembered epidemic of “sleepy sickness” that erupted worldwide along with the more famous influenza epidemic in the early twentieth century. This viral disease fatally disrupted their brain activity, pushing them into states of torpor and/or of manic inability to sleep; many died, or were left permanently disabled. While some seemingly recovered, later they began to display symptoms of Parkinsonian syndrome, particularly disruptions in movement and speech.
As they became less and less able to function, often needing round-the-clock nursing care to survive, these people were placed in institutions for “hopeless” cases. To one of these institutions near New York City Oliver Sacks came as a young doctor in the 1960s, and there his work with these post-encephalitic Parkinsonian patients changed his life.
In a stroke of fate, Dr. Sacks was present at the moment when a “wonder drug” was discovered that roused these patients out of their decades-long fixation and immobility. L-DOPA, which works to elevate dopamine levels in the brain, at first seemed to promise total, almost instant recovery. People leaped out of their wheelchairs and sang and danced with joy.
But then so-called “side effects” set in, as the medical establishment likes to call unwanted or adverse drug results that are fully as much a part of the treatment as the results they are aiming for. Pulled between extremes of manic and torpid behavior, the patients felt themselves to be walking an ever-narrowing path that became a tightrope over an abyss. Different titrations and schedules were tried, and sometimes a precarious balance was reached that allowed some individuals to have a higher-functioning life for their remaining years.
When that didn't work out, though, the results were often terrible and tragic to behold. Patients who had to be taken off the drug were left in a state far worse than they had been in before. Frequently they lost the will to live, or went mad, descending into a hellish hallucinatory state. Some were quietly euthanized, mercy killings that also meant the doctors need no longer observe the results of their tampering. One has to wonder to what extent the risk of doing such damage is warranted by the desirable results that sometimes, unpredictably, come about.
Great moral questions indeed are raised by this story. For me, frequently it resembled a horror story, a Frankenstein-tale of men enchanted by the Godlike powers they can achieve through the intellect, without the deeper knowledge of what will result from their experiments. Is it right to tinker with human subjects like this? What truly is the nature of consciousness, of life and death? In our quest for a better life on earth, what harm do we do through unawareness and egotism? Is it enough to have good intentions, or should we also be striving for higher knowledge, for the wisdom that sees the whole and not just isolated, disconnected parts?
For Dr. Sacks, there are no easy answers, but as he portrays his own struggle and his own “awakening” we gain a sense of how one morally striving person has engaged with these questions. He speaks against the tendency of modern medicine towards a mechanistic view of the human being, and movingly describes his own human encounters with his patients, encounters that inspired in him an awareness of the person who lives beyond statistics, beyond symptoms, beyond paralysis and speechlessness. He is filled with wonder when he observes the strange experiences his patients are subjected to, and humbled by what they need to call up in order to face their existence day after day.
Such an attitude is one we can all strive to emulate, even if we are not physicians. We will all do harm at times, often out of the best intentions, but let us not obscure the real, living human being with our fixed, mechanistic thoughts. The call to awaken to this power and this responsibility was for me the real message of the book.
I'll certainly be reading more by Oliver Sacks; there is so much to learn from these kinds of stories, pushing us beyond our “normal,” safe ways of experiencing the world. Have you read anything by him? What is your favorite?