Asleep: The Forgotten Epidemic That Remains One of Medicine's Greatest Mysteries by Molly Caldwell Crosby
Modern medicine provides so many explanations that it’s easy to forget that there are many diseases it still cannot explain, much less cure. While most of these diseases and syndromes are non-contagious, mystery epidemics like the Tudor sweating sickness in the fifteenth and sixteenth centuries, epidemics which vanished as quickly as they appeared, still remain unexplained as well. Molly Caldwell Crosby’s Asleep: The Forgotten Epidemic That Remains One of Medicine’s Greatest Mysteries explores the history of one of these mystery epidemics, the worldwide encephalitis lethargica epidemic of the early twentieth century. Unlike the Tudor disease, which hasn’t appeared in over four centuries, encephalitis lethargica could well reemerge, especially since it seems to have been somehow connected with pandemic flu.
Crosby’s interest in encephalitic lethargica, or sleeping sickness -- so named because its victims often slept until they died -- was inspired by her grandmother, who survived it, and the work of Dr. Oliver Sacks, who wrote about survivors of sleeping sickness in his 1973 book Awakenings. Encephalitis lethargica appeared as an epidemic during World War I, spread throughout the world, and disappeared in 1927. Symptoms could include unwakeable sleep as well as insomnia, facial tics, catatonia, Parkinsonism, and extreme behavioral changes. Some patients became violent towards others, or mutilated themselves. While many patients recovered, they often experienced lifelong symptoms or personality changes. Others died or ended up in mental institutions. Difficult to diagnose, with variable symptoms and an unclear vector of transmission, encephalitis lethargica may have affected as many as five million people worldwide -- or perhaps far fewer. Without understanding what causes it and how, doctors can’t predict whether encephalitis lethargica might reemerge in the wake of a new pandemic flu, or what its effects would be, given modern advances in medicine.
The book opens with a narrative about Crosby’s grandmother, who was sixteen when she fell asleep. Over the following weeks, she was pronounced dead three times -- hearing it every time, although she could not communicate with her parents or the doctors. She slept for six months, and although she eventually awoke and recovered, she remained distracted, distant, and perhaps depressed for the rest of her life. Asleep is framed around six case studies of sleeping sickness patients, embedded into a narrative that spans from 1916 to 2002. Although first described in 1917, encephalitis lethargica may have existed for much longer, and although it has not been epidemic for many decades, scientists today are still trying to understand what causes the disease and how it spreads.
Crosby wrote Asleep as a narrative, following various patients, doctors, and public health researchers during the course of the epidemic. While the vivid descriptions of 1920s and1930s New York (home to both the leading encephalitis lethargica researchers and innovative public health efforts) are interesting, the high ratio of setting and character to medical information served to highlight how little medical information there is about encephalitis lethargica. The research and speculation about the cause and mechanism of the disease would fill at most two chapters.
While I enjoyed Asleep as a story about medical research in ’20s and ’30s New York, I found it frustrating as a story about disease, since there turned out to be so little actual information about the disease itself. This is perhaps a problem with the framing of the book more than the book itself.
I also found some of Crosby’s descriptions of sleeping sickness patients concerning; while it’s true that some of the symptoms (and potential for death) were undeniably horrible, others are symptoms many people live with every day. There’s something disturbing about an able-bodied author writing vividly of the “horrors” of being, in effect, disabled. When the patients cannot speak for themselves, but are spoken for by twentieth century doctors, who are in turn filtered through the viewpoint of a twenty-first century writer, how much does the reader really learn about how the patients felt? Crosby clearly tried to be sensitive and accurate in her portrayal of the disease and those affected by it, but I didn’t feel she always succeeded.
Asleep is an interesting book and well worth reading, but in the end I felt that it could have been more substantial, and could have criticized early twentieth century language about mental illness and disability more.
Asleep: The Forgotten Epidemic That Remains One of Medicine’s Greatest Mysteries by Molly Caldwell Crosby