Doctors are puzzled by a terrifying illness that with progression turns patients into zombies, leaving them with psychopathic behaviors that in one case resulted in a person gouging out their own eyes.
The critically acclaimed 1990 film Awakenings, starring Robin Williams and Robert De Niro, is far more than a moving drama – it’s based on one of the most haunting real-life medical mysteries of the 20th century. The film draws its powerful narrative from neurologist Dr. Oliver Sacks’ 1973 non-fiction book “Awakenings,” which recounts his work with patients who survived the devastating encephalitis lethargica epidemic that swept the globe in the early 1900s.
These survivors, once infected by the mysterious illness, had fallen into a state of post-encephalitic parkinsonism (PEP) – a condition that left them catatonic, motionless, and unresponsive, sometimes for decades. DeNiro plays a patient, whose doctor – Williams – treats him with a trial drug (levodopa, currently used in the treatment of Parkinson’s), resulting in temporary awakenings from PEP.
Killed half a million
Encephalitis lethargica, also called the “sleep sickness,” is the mysterious disease that appeared without warning in the mid-1910s, infected more than a million people, and killed an estimated 500,000 across Europe.
Despite its devastating impact, the cause of this strange neurological illness – that vanished just as suddenly as it arrived – has never been identified. To this day, scientists and doctors remain in the dark about what triggered the outbreak, how it spread so quickly, and why it disappeared a decade later.
Symptoms
The condition initially presented with common symptoms like overwhelming fatigue, sleep disturbances, high fevers, headaches, muscle pain, vision problems, and even severe psychiatric changes, including extreme aggression.
“Strange neuropsychiatric behaviors and overwhelming lethargic sleepiness, which induced a coma-like state, as well as muscle rigidity, were cornerstones of the illness,” explains Dr. Heidi Moawad in Neurology Live. “But not every patient had all of the characteristic symptoms and not all of them experienced the same disease severity.”
Patients would fall into an intense state of sleep, sometimes for weeks to a few months and their health would suffer. But while their bodies appeared lifeless, many victims were fully conscious – trapped inside their own minds, unable to speak or move.
‘Calm before the storm’
While many tragically died from respiratory failure shortly after infection (the first stage), some survivors faced an even more horrifying outcome.
“The second phase was marked by a general loss of concentration and interest in life, giving a vague sensation that the patient was not the person they had once been,” writes senior researcher Paul Foley in The Conversation. “But this period, which resembled chronic fatigue syndrome, was the calm before the storm.”
Parkinsonism
As the disease progressed, it caused severe neurological damage, including PEP.
As time passed, the violent impulses in some patients were overtaken by worsening PEP. Their bodies became stiff and immobile, leaving them fully aware but physically frozen, much like they were during the disease’s initial sleep phase.
These individuals spent decades in institutions, their minds active but isolated, unable to interact with the world around them. Emotion, willpower, and human connection faded, and their faces became expressionless masks.
Restless children to relentless criminals
Among the most disturbing effects were the severe behavioral changes seen in young survivors – symptoms that became worse through puberty.
According to historical reports, adolescent patients displayed “changes of character that approached the psychopathic.”
“As they grew in strength, their incorrigible impulsiveness escalated in violence and they posed a danger to themselves and others,” explains Foley. “Errant behaviours included cruelty to anyone who crossed them; destructiveness; lying; and self-mutilation including, in one example, removal of eyes.”
“When they reached adolescence, these patients manifested inappropriate and excessive sexuality, including sexual assault without regard for age or gender.”
What made it even more unsettling was that these individuals often understood right from wrong – they just lacked the ability to stop themselves.
“Some children improved after adolescence, but in many the only brake on their bad behavior was the parkinsonism that developed as they entered adulthood,” reports the Conversation.
“Those not confined to hospital with parkinsonism often proceeded to a life of habitual criminality – mostly theft in men, prostitution in women, but also ranging up to rape and murder.”
Disappearance
By 1927, encephalitis lethargica had nearly disappeared. Since then, only about 80 cases have been recorded worldwide and its abrupt vanishing has left scientists with more questions than answers.
Some researchers believe a link to the Spanish Flu pandemic may offer clues, as many patients reported flu-like symptoms just before falling ill.
Even now, a century later, experts continue to study the disease, hoping to unravel its secrets – and prevent its possible return.
Encephalitis lethargica remains a lingering medical mystery – a terrifying reminder that even the most devastating illnesses can disappear without warning, and just as easily return.
Did you know Awakenings was a real-life story? Please let us know what you think of this horrible disease and then share it with others so we can get the conversation started!
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