Asleep: The Forgotten Epidemic that Remains One of Medicine's Greatest Mysteries
3 journalers for this copy...
Crosby focuses on the doctors of the time who tried to unravel the mystery, and she does a pretty good job. It was interesting to see the lives this disease touched, and heart-breaking to see many possible answers slip away as the Great Depression deepened, and the epidemic seemed to pass. Crosby's account of her own relative who was affected by the disease rang very true. With changes in the brain, people are a little removed and 'off,' very sad to see.
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The book is about the epidemic of encephalitis lethargica, aka "sleeping sickness", in the 1920s - also the subject of Oliver Sacks' Awakenings. The prologue opens with "My grandmother was sixteen when she fell asleep," and describes her grandmother's own experience with the weeks that she was unable to move or communicate - a chilling situation, especially when she could hear the doctors pronounce her dead...
There are accounts of soldiers in WWI who, after seeming to have suffered shell shock or one of the many other traumas that that war inflicted, would fall into longer and longer sleeps - and nothing the doctors did made a difference, or told them what was wrong. Eventually several theories were proposed, and a name for the syndrome: "encephalitis lethargica". But this only described it, and people still didn't know the cause - and, between the war and the flu pandemic, the sleeping sickness fell onto the back burner.
In the '20s the number of cases began to rise, reaching epidemic proportions, but still leaving doctors and caregivers baffled. Many sufferers died; of those who survived, many were changed in different ways, often to such a degree that they weren't the same people anymore. And some of them didn't die, but didn't wake up either...
The book goes into the history of epidemics in general, as a background for the difficulties in analyzing this particular epidemic; it includes many case histories, nearly all of them heart-wrenching; it looks at the search for a diagnosis, for a cause, for a vaccine, for any kind of treatment.
And it reveals the way in which the institutionalized survivors of the illness were forgotten, as the years passed and research funding dried up and new ailments replaced this one as the scourge of the day. But since the patients who came out of their sleep reported being awake and aware mentally the whole time, it seems very likely that most of the victims in the institutions were also aware - knowing where they were, and that they'd been left behind.
The book wraps up with some accounts of recent cases - the disease hasn't gone away, though it's so rare that modern doctors often fail to recognize it. There are a few treatments that seem to help, if administered in time, but the disease is still largely a mystery - though I found some of the theories, especially its possible relationship to influenza, intriguing.
A fascinating account of a nightmare disease!