Asleep

The Forgotten Epidemic That Remains One Of Medicine's Greatest Mysteries
by Molly Caldwell Crosby

In 1990, a riveting film, directed by the late Penny Marshall and starring Robin Williams (in one of his memorable serious characters) and Robert De Niro, Awakenings, was released. It was based on the 1974 book of the same title, written by Oliver Sacks. It explored a strange epidemic that surfaced (so far as anyone knows) in about 1918, and receded (again, so far as anyone knows) in about 1928.

Compared to the catastrophic influenza of 1918, it didn't attain killer plague status, but what it did do was leave a post-illness syndrome behind in many cases, and exhibited unusual and inconsistent symptoms while in its active phase.

The epidemic was called encephalitis lethargica, as it was a brain infection that often caused patients to sleep - sometimes for months - completely unable to awaken, yet not really comatose, and in otherwise relatively "good" health.

Later, sometimes years later, the patient might begin to exhibit really odd symptoms that ended up filling asylums in the areas where the epidemic was most active, large cities.

Crosby has written a tour-de-force piece of research, in a generally very readable fashion - with the occasional glaring mis-use of language that left me frustrated and puzzled. For a writer so uncommonly able to discover, organize, and present her material, it seems what she may have lacked was a dedicated editor. And the occasional mis-characterization of the intent and direction of social forces (Progressive versus Conservative, suggesting that the Progressive movement toward birth control was a Conservative impulse) were likewise dead stops in an otherwise read-it-in-one-sitting book.

Crosby uses an almost film-like method of organizing the material. She divides it into cases, earliest to latest, in each case setting the stage with a particular sufferer and the circumstances surrounding the patient's onset of symptoms, as well as painting a picture of the world around the sufferer at that time.

Without following an exact pattern, she also introduces the patient's physician or medical team, the treatment, the more general outlook of the epidemic at the time each case presented, and the (typically painfully sad) outcome.

Overshadowed as it was by the 1918 influenza, and by polio and other 20th century plagues, encephalitis lethargica was little known and less understood by the general public. If a family member was stricken, however, it was likely to upend life not just for the patient but for everyone around him as well. Beyond the long period of complete incapacitation, the often much-delayed sequelae included complete personality shifts - the patient becoming nasty, dangerous, violent, and unable to resume a normal life. Then came the onset of Parkinson's symptoms, with the tremors, unsteady gait, and periods of mental absence. Finally, the patient would end up in what might be described as a "locked in" state - unable to move or respond at all, yet living.

Crosby doesn't delve into the cure as much as Sacks does in his book, in which he details the discovery that L-dopa could "awaken" these frozen patients, giving them a renewed, though pitifully short, period of returning to life. But she does dig deeply into the many ways medicine and certain heroic medical figures tried to help patients, and their long-suffering families, to either a cure, or improvement, of their devastating illness.

The illness leaves damage to the brain, as carefully preserved brain tissue of deceased patients demonstrates. And the story leaves a reader with questions about things like schizophrenia, and auto-immune responses, which seem to appear out of no-where, often in a young and seemingly normal young person (schizophrenia), or in an otherwise healthy individual (auto-immune disease). Worse, there is no clear indication that the disease has disappeared; it is merely quiet, and for who knows how long?

Even with the relatively minor gripes I had with the book, it is one that even someone not inclined - as I am - to be fascinated by medical mysteries will find compelling.