Molly Caldwell Crosby reminds us of a forgotten epidemic.
Molly Caldwell Crosby
Back in 1929, a teenager in Texas fell asleep and did not reopen her eyes for six months. Her pulse during those months was so shallow that on three separate occasions her doctor pronounced her dead. However, after 180 days and for reasons unknown, she woke up. The family practitioner didn't know what had brought on the girl's sleep. Nor could he explain her sudden reawakening. But the 16-year-old went on to marry. She gave birth to four children. And yet, she never lost a certain far-off look, and her family had to accept the way she drifted in and out of conversations, her habit of fixing on objects, and her ability to stare at a wall for hours.
Mentally "touched" is how she was described, and Virginia Thompson Brownlee was her name. But "grandmother" is what Memphian Molly Caldwell Crosby called her growing up. Inspired by her grandmother, Crosby has now written Asleep: The Forgotten Epidemic That Remains One of Medicine's Greatest Mysteries (Berkley Books), a follow-up to her book on yellow fever, The American Plague.
It was no mystery, however, what Virginia came down with in 1929 and what she would in various ways suffer from until her death in 1998. Italian peasants used to refer to it as "La Nonna," which, ironically, means "the grandmother." Italians in the cities referred to it as "nona," or "living dead." But doctors from Vienna to London to New York had a more scientific name for it: encephalitis lethargica. And along with the cause and a cure, the disease remains a mystery — a great mystery that neurologist Oliver Sacks examined in his own book on his own patients who suffered from it, Awakenings.
Crosby examines a number of case histories too, and she begins where the disease first came to the attention of doctors: the field hospitals of World War I. Then she moves to a set of cases in New York City throughout the 1920s and '30s (and one patient on Long Island — the wife of J.P. Morgan); then finally to London. But what does Crosby make of encephalitis lethargica? What did anyone make of it, including the doctors Crosby profiles in her book?
A number of things, and chief among them the difficulty researchers had defining the disease. As Crosby writes: "Unlike other major epidemics, this one was diffuse, borderless, hard to trace, impossible to define."
This much we do know, however: It struck an estimated 5 million people worldwide, killing one-third and sending another third into asylums for life.
But as Crosby also writes, even the term "lethargica" hardly fits the range of far-reaching symptoms. Some sufferers were actually unable to sleep, their bodies the site of uncontrollable tics. Others were known to talk incessantly. Some to be in a state of paralysis. One poor girl extracted her teeth and then calmly plucked out her eyes. Was encephalitis, as many maintained, a response to influenza or polio? An expression of schizophrenia?
Postencephalitic reactions could be even worse. One was an extreme form of Parkinson's disease leading to all-out catatonia; another was, in reports filed by the British press, "altered dispositions" leading to "gross mental defects" and "homicidal attacks." The objects of the press were postencephalitic children who tried to murder their parents or siblings or tried to kill themselves, and that could mean running off rooftops.
After such horrific descriptions in Asleep, the case of one woman — partially awake during brain surgery — hardly seems noteworthy, but, in today's terms, it's certainly weird. She politely asked during the operation for a puff from her cigarette, and the surgeon just as politely replied, "Go right ahead, honey."
What had happened to these individuals? A number of things. As Crosby writes, evidence points to damage to the basal ganglia in the brain, which control messages from the brain to the rest of the body; disruption of messages to and from the frontal lobe of the brain, which controls personality, behavior, inhibitions, and emotions; and disruptions of messages to and from the thalamus and hypothalamus, identified as the electrical switch for sleep.
Was a virus to blame for such damage? A bacterium? An autoimmune response to infection (herpes?) that ended up also attacking the body (and personality) itself?
Crosby doesn't know. Scientists still don't know. And no one knows why the encephalitis lethargica epidemic has been so largely forgotten. Crosby, however, has her ideas.
Was the epidemic, once it passed (like World War I), best left forgotten in the face of mounting optimism during the 1920s? And was it best left forgotten during the trying economic times of the 1930s?
Of one thing, Crosby is certain: "The thousands of survivors that epidemic encephalitis maimed ended up in institutions; they were removed from everyday life and, consequently, the collective memory of society."
It was Oliver Sacks in Awakenings who brought encephalitis lethargica once more to our attention. Molly Caldwell Crosby in Asleep expands on Sacks and gives readers a fuller history of this forgotten malady. In the case of the patients she describes, it's a painful, shocking history; in the case of the doctors who tried to treat it, understand it, cure it, it's a noble, self-sacrificing history too.