Remember that time a plague turned 5 million adults and children into living corpses/hell spawn all over the world, including New Orleans? No?
That’s because the EL, or encephalitis lethargica, struck during two even larger headline-makers: World War I, and the Spanish Flu pandemic of 1918. (Which should have been named “The Kansas Flu” because that’s where it originated, but the American government hid it with propaganda because that’s how we roll.) Symptoms of EL in some cases included fever, aches, altered behavior, and mania, and that all sucks. But some poor sufferers were struck with something far worse: Paralysis, immobility, kinetic tics, delirium, catatonia, altered speech and “pseudosomnolence.”
The latter was a state wherein victims would sleep abnormally long periods but remember everything happening around them while they did. Some would fall asleep while chewing food or using the bathroom. Family members described witnessing loved ones sleep like the dead for days, eyes open, unresponsive but alive, only to waken suddenly with memories of the household conversations they had “slept” through.
“They neither conveyed nor felt the feeling of life; they were as insubstantial as ghosts, and as passive as zombies,” wrote neurologist Oliver Sacks of patients in 1973.
Many of these “zombies” died. Around 50% of survivors went on to develop Parkinson’s Disease later, suggesting significant damage left by the initial infection to a host’s central nervous system and microbiome. And while EL did kill a great number of people internationally in the 1900s—it is believed about 1 million of the afflicted perished, though some were never formally diagnosed—the most disturbing effects were reserved for children who survived it.
Later determined to be a form of brain infection, EL transformed one third of its young victims into monsters and criminals. Previously sweet and well-behaved kids tried to rape or murder their own siblings. They smeared feces, screamed primally, and destroyed furniture. One boy tried to bite off another boy’s genitals, and an 8-year-old girl pulled out all of her teeth before plucking out her own eyes. These children later articulated horror at their own deeds, describing an almost zombie-like inability to stop from committing heinous acts which repulsed them. Most ended up in prisons or institutions. Some committed suicide.
Individuals between the ages of 10 and 45 were most likely to contract EL, with 50% of all cases occurring in those 10 to 30. Researchers posited that it was triggered by environmental toxins, viral/bacterial infection, autoimmunity…or a perfect storm of all three.
In 1922, New Orleans’ doctors tried to solve the mystery of this sickness when dozen of cases landed in Louisiana. Dr. C. S. Holbrook implored his colleagues at the time to not dismiss EL as a foreign illness which couldn’t possibly infect good ole American patriots: “We have been inclined to look upon this disease as unique and not to be expected or found within our state. [But] lethargic encephalitis is right in our community and a large number of cases of this disease are within the state. Fever is present in the early stages of the disease, the temperature ranging from 101 to 103.5 in some cases. Radiating pains in the arms and legs with headache have even presented as early symptoms in many cases and this pain has persisted throughout the course of the disease in a few instances, and has been very difficult to control.”
Transcripts of Holbrook’s talks with fellow NOLA doctors revealed universal frustration that there was no test available to help diagnose patients. Dr. C. V. Unsworth: “I have seen twelve cases of encephalitis lethargica so-called, and my experience has been the it is difficult to make a positive diagnosis of the disease…I believe it is secondary. It follows some acute infection. Most of the cases I have seen have followed measles and influenza. The more excitable the cases, the more grave the prognosis is. The quiet cases will sometimes get well.” Dr. E. McC. Connely, added: “The diagnosis is very difficult. No one seems to have worked out any definite test that will aid us in making it.”
One hundred years later we still refer to EL as a “diagnosis of exclusion.” Meaning “still have no test for it.”
While today almost no one knows the term “encephalitis lethargica” (staying relevant is even hard for infectious diseases), some may recognize it in pop culture: 1990’s Awakenings, starring Robert De Niro and Robin Willians, showcased EL and the efforts of 1960s researchers to cure it. (Spoiler Alert: They didn’t.)
But the filmmakers definitely left out the parts about post-infectious demon children, because some things really ruin inspiring tales of American compassion. And little girls pulling out their own teeth is definitely one of them.
You can read more about in Molly Caldwell Crosby’s “Asleep: The Forgetten Epidemic” and Jennifer Wright’s excellent “Get Well Soon.”