Book tells of forgotten epidemic

Author Molly Caldwell Crosby's grandmother was 16 when she was afflicted with a mysterious case of encephalitis lethargica, or sleeping sickness, in 1929. Virginia's parents put her to bed, and she promptly fell asleep. She didn't open her eyes again for 180 days.

On three separate occasions, she slept for almost half a year.

Virginia ultimately recovered, married and had four children. But like many encephalitis lethargica victims, she survived as a broken human being who battled mental illness for the rest of her life.

Crosby, who grew up in Dallas and lives in Memphis, has written a book about the "forgotten" epidemic that swept across Europe and the United States in the 1920s and left an estimated 1 million dead. The former National Geographic magazine writer chronicles the outbreak through a series of horrific and heartbreaking case studies in Asleep: The Forgotten Epidemic That Remains One of Medicine's Greatest Mysteries (Berkley, $24.95). It hit bookstore shelves last Tuesday.

"What I find so curious is how an epidemic that took so many lives can be so easily forgotten," Crosby says. "In the United Kingdom, especially in London, there are doctors who have continued the research. But in America, virtually no one knows anything about it, even though we were just as hard hit."

Roughly a third of those afflicted with sleeping sickness, prisoners locked inside their immobilized bodies, died. But another third survived only to suffer a litany of chronic ailments, from early onset Parkinson's to vision loss to psychological breakdowns during which victims would compulsively harm or disfigure themselves.

Many sufferers ultimately were institutionalized in the '40s, '50s and '60s and lobotomized or given severe medications that made them seem like zombies.

"It seems harsh to say that those who died were the 'lucky' ones," Crosby says, "but many of the survivors went on to lead truly tormented lives."

To this day, researchers have been unable to pinpoint the source of the disease, to determine how it spread or develop a cure. Or to explain why, in the late 1920s, it disappeared just as quickly as it had arrived.

Solving this medical mystery could prove to be important, Crosby says.

There may be some link between the sleeping sickness epidemic and the 1918 flu pandemic. Thus, some researchers have expressed concern that when the next flu pandemic hits, such as the H1N1 virus, encephalitis lethargica could re-emerge. Theoretically, it could spread even more virulently in our globalized culture.

"I don't want to be an alarmist, but what if it occurs again in some epidemic form, and we're not ready?" Crosby says. "If we do start seeing cases like this again, even in very minimal amounts, everybody will be up in arms and wondering, 'How could we not have seen this coming?'"

Asleep is Crosby's second book. Her first book, published in 2006, was similarly themed: The American Plague is about a yellow fever epidemic that killed 100,000 Americans in the early 1900s.

"People often ask me if I'm a hypochondriac," Crosby says. "I say, 'No, just fascinated by these diseases and how, like natural disasters like hurricanes and earthquakes, they can turn a city upside down."