There wasn’t just an influenza pandemic at the end of World War I. There was also a pandemic of a, to me, much more terrifying illness. Influenza is scary because it has the potential to kill so many of the people it infects. While encephalitis lethargica killed roughly 30% of its victims, it left the survivors with a variety of movement disorders, tics, catalepsy, and so on, that left these people with existences that many might consider worse than death. In Awakenings, Dr. Oliver Sacks shares a series of case histories of people with post-encephalitis who were treated with a new “wonder drug” called L-DOPA in the summer of 1969. This deeply human and humane series of case studies reveals the complications of “waking up” from years of immobility and nothingness and heart-breaking after effects of L-DOPA that were sometimes worse than the patients’ original conditions. Above all, Awakenings stands as some of the best medical writing I’ve ever read because of Dr. Sacks’ approach to his patients—a blend of empathy, curiosity, art, and science.
We still don’t know what causes encephalitis lethargica. Instead, the disease ended up teaching doctors and researchers a ton about movement, dopamine, the interplay of emotion with symptoms and receptiveness to medication, the importance of sleep, and so much more. That said, a lot what doctors and researchers observed was contradictory to what they expected. The patients in Dr. Sacks case histories have a variety of responses to L-DOPA. Some do extraordinarily well. Others are blitzed with new tics and symptoms. For some, the benefits are fleeting. Some patients end up responding well when L-DOPA is withdrawn and reintroduced later. Doses have to be continually adjusted, mostly by gut feel because normal pharmacological calculations just don’t apply. Sacks often mentions the balancing act he and his patients have to maintain to get the most benefit with the least amount of consequences. It’s clear that there is still so much that we just don’t know about the brain.
Because Dr. Sacks chose to write case histories, instead of a book about encephalitis lethargica and post-encephalitic Parkinsonian, we are given the opportunity to “meet” people who lived with this condition. There are moments where the case studies are very clinical, full of medical language that I had to look up online only to think, “well, of course, why didn’t you say the patient’s eyelids had closed involuntarily!” Overall, however, I was amazed at Sacks’ ability to capture the people behind the symptoms that most people can’t get past. He made connections with his patients in the years he was at the long term care facility were he worked. These connections and his deep empathy reveal a patient who is a vehement reader and author of book reviews, a woman who deeply loves her family and rejoices at the chance to reconnect with them, and a woman who has her “musical-ness” restored to her, among others.
Perhaps the most profound parts of Awakenings come after the (sadly temporary and erratic) miracles of L-DOPA. Sacks identified three stages to his patients’ responses to the medication. First, there was an awakening from their symptoms. Then there were tribulations, when old problems recurred or new problems arose. Lastly, there was acceptance (or at least accommodation) with the patients’ new normal. At times, Sacks’ patients are more accepting than he is. Like many doctors, Sacks sometimes wants to keep trying until his patients tell him that they’re done. Sacks’ acceptance seems to take the form of an accommodation with his profession. He can see the problems of being overly clinical, overly confident in medication, and a severe lack of perspective. Sacks argues that doctors need to see their patients as a whole, not as symptoms to be treated. Thankfully, there are doctors like Siddhartha Mukherjee who are carrying on Dr. Sacks’ legacy of humanistic medicine.
Awakenings is an amazing read, for so many reasons. I strongly recommend it to readers who are interested in medicine and medical history—especially if they are interested in our mysterious brains. I loved reading Sacks’ perspective on illness and the relationship between patients and doctors. That perspective is peppered with literary references from John Donne, Sir Thomas Browne, Marcel Proust, Thomas de Quincey, and so many others that Sacks often reads like a throwback to a time when STEM (science, technology, engineering, and medicine education) was not separated from HEART (humanities, ethics, art, rhetoric, and teaching). Sacks says that medicine is art and science; Awakenings offers ample proof of what can happen when they come together to help people with even the most severe and unexplored conditions.
Note on editions: I read the 1990 version of Awakenings. This edition contains more case studies and a series of appendices to update what doctors now know about post-encephalitic Parkinsonism. It also has footnotes that themselves have additional notes. Sacks did not stop thinking about this group of patients even decades later. Personally, I get a kick out of the way Awakenings still seemed to be in-progress on Dr. Sacks’ desk even while I read a paper-and-ink book decades later.
Notes for bibliotherapeutic use: Recommend to readers who could use a little more empathy when it comes to chronic illness or disability and need to be reminded of others’ personhood.