Asleep: The Forgotten Epidemic that Remains One of Medicines Great Mysteries

Nursing Book Club

Asleep: The Forgotten Epidemic that Remains One of Medicines Great Mysteries

The living dead

By Molly Caldwell Crosby (Berkley Books, 2010)
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I have to admit that there’s nothing I like as well as a good medical mystery. Give me some symptoms and ask me what it is, how to test for it and who is at risk, and I’ll happily spend an afternoon at the computer. That’s why I found Molly Caldwell Crosby’s Asleep: The Forgotten Epidemic that Remains One of Medicine’s Greatest Mysteries so intriguing. There was once a deadly disease claiming millions of victims around the world, but today, almost no one even remembers it.

Odd Case Studies

In the prologue, the author reveals that her grandmother fell asleep in 1929, at the age of 16, and woke up 180 days later. Her grandmother described that time as feeling as if she were there but not there, that “her body no longer answered to her mind.” Crosby gives us extensive case histories of other victims, annotated with well-researched notes, as well as biographies of the physicians who studied this strange “sleeping sickness.” In the end, we feel as if we know these people.

The Cause
Initially, the illness seemed to coincide with World War I, when microbes, viruses and potential hosts from around the world came together on the battlefield, an environment that offered maximum ability to incubate and transmit new diseases. However, the sleeping sickness also coincided with and was overshadowed by the great influenza pandemic, which claimed millions of healthy victims and received much more attention.

Eventually diagnosed as “encephalitis lethargica,” sleeping sickness damaged the brain, which could result in not only a protracted, near-comatose condition that could last for months, but also extreme personality shifts, changes in inhibition, spastic movement and what we now know as obsessive compulsive activities. Whole hospitals were built to care for the patients, and research into the causes resulted in the emerging science of neurology.

Rip Van Winkle
But what happened to the disease, and why do we know so little about it? In the author’s words, “Unlike other major epidemics, this one was diffuse, borderless, hard to trace, impossible to define.” Symptoms varied from person to person — some patients improved, some did not. Some patients were considered “the living dead,” which might have been the basis for the stories of Sleeping Beauty or Rip Van Winkle. Oliver Sacks described working with survivors in the 1960s in his book Awakenings, later made into a movie starring Robin Williams. Sacks was able to awaken patients briefly with the use of L-DOPA.

The disease seems to have first been noticed in Spain in the 1890s, where it was called “nonna.” But was the disease a virus or a pathological response to a bacteria? Could it have been an autoimmune response that caused the brain damage? Sleeping sickness seems to have affected as many as 5 million people in a few distinct waves, the last in the U.S. beginning in 1924.

Still a Mystery

Is the disease gone? One Australian physician believes he has seen as many as 25 cases in infants, characterized by sleep disorder, movement disorder and psychiatric symptoms. In 2006, a case may have occurred and resolved in a U.S. high school athlete.

Asleep is a page-turner for self-proclaimed CDC junkies like myself, but anyone will enjoy its well-written case studies. Getting enough sleep is always important, but I’d never before worried about getting too much. If you are like many healthcare workers and worry that every symptom you have is of a disease you’ve read about, this may not be the book for you. Remember, you may just be overtired and sleeping through your alarm!   

Christine Contillo, RN, BSN, is a public health nurse who suggests joining a book club as a reason to put down trashy magazines and look smart on the subway.

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