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Book Review: Asleep: The Forgotten Epidemic that Remains One of Medicine’s Greatest Mysteries by Molly Caldwell Crosby

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“Get outta bed! You got sleeping sickness?” When I was a child, sleeping late was my favorite luxury. I didn’t know there really was a disease called “sleeping sickness” — I thought it was a product of my father’s sometimes colorful imagination (like “down the road a piece” will actually give you an idea of how far you must travel). There was never a time that I didn’t like sleeping late and I still feel that sleep is one of life’s finer pleasures. After all, sleep is a restorative; the body heals itself when we are asleep. What could be better than a nice long, uninterrupted sleep?

In Asleep, Molly Caldwell Crosby takes the reader on an unforgettable journey as she details “The forgotten epidemic that remains one of medicine’s greatest mysteries.” That epidemic was encephalitis lethargica and its victims did have long, uninterrupted sleep, but it was neither nice nor peaceful. In the twentieth century, during the teens and twenties, five million people developed this form of encephalitis (swelling of the brain), a third of whom died. Initially they slept, for days, weeks, or even months. They couldn’t awaken, but they were aware. Suddenly sleep doesn’t seem like such a luxury, does it?

The encephalitis lethargica epidemic began contemporaneously with the great influenza pandemic that killed millions in 1918. Unlike the flu, there was no obvious cause. What makes Asleep so timely is that conditions fostering a pandemic are more favorable now than they were in 1918. Global travel is so easy, not just for humans, but for bacteria and viruses, too. If sleeping sickness was the result of influenza, and we’re teetering on the brink of a pandemic (it’s not “if,” but “when”), then what are the chances of a recurrence of a sleeping sickness epidemic?

No one knows exactly what caused the encephalitis epidemic, although there are several theories. Influenza is just one of them. Another theory is that it was a malfunction of the immune system. The unsettling part of the mystery is that the solution has still not been found; there is no known cause, there is no known cure. What is known is that once half those who survived the initial disease recovered, they would continue to suffer. The suffering did not always occur within a short term of the illness, but could surface years, even decades, later, and it affected both the body and the mind.

People would experience a tremor, and then a strange type of paralysis, slowly going into an almost vegetative state with one horrible exception — they were aware. Unable to move or speak, they were trapped inside bodies that had forgotten they were there. The last known victim of encephalitis lethargica died in an institution in 2002, 70 years after being admitted. Imagine 70 years in the dentist’s waiting room, encased in stone, able to hear all that goes on around you but unable to communicate. In many ways, this mystery is a horror story. A profound tale of terror, made even more terrible by the fact that those who lived it could not express it.

Young victims faced another type of horror. After “recovering,” their personalities were irreversibly altered. They became uncontrollable “monsters,” a threat to themselves and those around them. Eventually they would be institutionalized for life. These children knew what they were doing when they “misbehaved” but had no idea why these things happened or how to stop them.

This sleeping sickness was not believed to be a “new” disease when it came to light in the 1920s and, although that epidemic is largely forgotten, is not a dormant disease. Not as widespread as it has been historically, it still claims victims. Crosby points to well known literary works that may have been inspired by outbreaks of encephalitis lethargica, such as Premature Burial and Sleeping Beauty, and cites modern occurrences. (If every time you get a sore throat you think it’s throat cancer, you may not want to read this book.)

Asleep is not just a profile of an epidemic. It offers a vibrant slice of the history of New York, where there were so many victims and so much of the research had taken place. It is also a profile of the various doctors — neurologists, neuropsychiatrists, researchers — who took on the disease and devoted years of their lives attempting to understand and cure it. An extensive bibliography and plethora of notes provide the reader with a hint of how much research was involved in the writing of Asleep. Yet it never bores. As much as I enjoy a decent medical thriller (think Robin Cook), I was afraid this book might bog down in minutiae; instead it took me to a place I’ve never been before, and kept me there. And Crosby is a far better writer than Cook.

The heart of Asleep lies in the case histories. Crosby introduces the reader to seven people who succumbed, one way or another, to this terrible illness. Accounts of their experiences are sad beyond measure. Reading about them, one feels a tiny particle of the frustration the doctors and researchers who worked so hard to find a cure must have felt. Readers looking for a happy ending won’t find it here.

There is something extravagant about a good book; it is an indulgent treat. When it is proofread and edited professionally, the reader is further delighted. Asleep was, indeed, just such a pleasure.

Bottom Line: Would I buy Asleep? Yes. It is totally absorbing, immensely readable. Release is scheduled for March 3.

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