Many people are familiar with the poignant story of Awakenings, based on a book by the eminent psychologist Oliver Sacks
and made into an Oscar-nominated film starring Robin Williams and Robert De Niro. It involves a group of people who have been in a coma-like state for years following a plague of Encephalitis Lethargica that swept America in the early part of the 20th
century. A young doctor (played by Williams) experiments with a new medicine, L-Dopa, to bring them back to functioning life with apparent immediate success. The terrible truth is that, though apparently unconscious for so long, the patients reported being fully aware of what was happening, just unable to speak and ask for help. The film follows one patient
(de Niro's character) as he tries to cope with life in a technologically advanced culture that has left him behind. Gradually the affects of the new medicine begin to fade, and we watch the patients gradually slipping back into their vegetative state, knowing full well that this is their fate as they see the others losing their faculties and sinking one by one into the state of zombie-like coma. Though fictionalized, the story is true.
Asleep examines the EL plague, which in its day was as terrifying as bird flu, swine flu or AIDS. Its timing was unique as it was associated with the great influenza epidemic that killed thousands of Americans. No cure for EL was known, and many died from it or were left permanently crippled mentally or physically by its bizarre and contradictory symptoms. Some became, against their will, hateful toward those around them, or made dreadful spasmodic movements such as sniffing (one boy was described as leaping up and down from all fours like a cartoon character, his face clearly showing his own horror at the incontrollable impulse). By far the most horrible case described in the book is of a young woman who plucked out both of her eyes, and could offer no explanation, only expressing that she had to.
There are about a dozen case histories in the book, one of them the author's grandmother Virginia, giving Crosby a special reason for doing the research on the progress and later dwindling out of the disease. Of her grandmother she says that, after her initial battle with the disease, she “went on to marry and have four children, but she was never normal…she was described as mentally ‘touched’…she drifted in and out of conversations without warning. She would look at a dark wall for hours, the ash on her cigarette sifting off in soft gray pieces.”
Like Virginia, who contracted EL when she was 16, many children were afflicted with EL, and the only treatment known was to put them in institutions,
"farms" as they were often called, where they could exist in isolation from the rest of society. Not seen or heard, not able to hurt others, not a burden to their grief-stricken families who had to endure the knowledge that a once-normal child had become a sleeping beauty at best, at worst an uncontrollable monster. The book reveals the way that such institutions arose and, like all institutions for the sick and insane, soon became overcrowded and depressing facilities whose initial purpose of cure became little more than a corralling effort for lost souls whose fate was easier to ignore than to improve.
The author postulates that this disease, associated with influenza, could re-surface as a major plague; it has never completely disappeared, and because the main treatment has been isolation and we no longer live in an isolated world, there is a chance that it could be carried on the back of another bug and become an international menace. Antibiotics, antivirals and steroids offer some limited relief for sufferers of the EL and the promise of prevention of long-term damage. Of course, medical science is always on the trail of a complete cure. As Crosby states, “when and if this mystery is solved, it will certainly be one of medicine’s longest and greatest examples of epidemiological prowess.”