Classic Science Writing. This 1973 book has vivid description of symptoms to assist the lay reader. To see how sick these patients were, check out a 1974 Yorkshire TV documentary by Duncan Dallas. It's grim, but also gives a sense that Sacks was what my mother would have called “a real character.”
Awakenings – Oliver Sacks
In the late 1960s, Beth Abraham Hospital in the Bronx housed
around 80 patients who had been frozen in time - physically and mentally
immobilized for decades. These individuals were survivors of the encephalitis
lethargica pandemic, which swept through the world from the end of World War I
until about 1928. Unlike African sleeping sickness, this condition had no
connection to tsetse flies. Victims typically fell into a coma-like state, lost
the ability to swallow, became emaciated, and often died of starvation. Those
who survived were left with post-encephalitic parkinsonian syndrome, marked by
tremors, rigidity, catatonia, and a mask-like facial expression.
These patients, abandoned by families and society, were
confined to hospitals and asylums. Their personalities had often changed
dramatically - some became lewd or violent, others wisecracking or withdrawn.
Psychologically, they ranged from serene acceptance of their fate to deep
resentment over lost time. Many yearned not only for a cure but for restitution
- a miraculous return to their youth and the life they had missed.
In 1966, British neurologist Dr. Oliver Sacks began working
at Beth Abraham. Around the same time, the drug levodopa (L-DOPA) emerged as a
promising treatment for Parkinson’s disease. Sacks received FDA approval to
test L-DOPA on these long-term encephalitis lethargica patients.
It’s important to note that this research began before the
ethical standards of informed consent were widely adopted. The Tuskegee
syphilis scandal (exposed in 1972) and the Belmont Report (1976) had not yet
reshaped biomedical ethics in research with human subjects. In one troubling case, Sacks admitted to secretly
administering L-DOPA to a patient who had refused treatment.
Sacks was cautious. He feared that these patients, long
dormant, might erupt emotionally and psychologically if suddenly awakened. What
would it mean to re-enter the world in 1969 after decades of isolation?
Despite his concerns, the deteriorating condition of the
patients compelled him to begin treatment in the summer of 1969. The results
were dramatic but inconsistent. One patient, Lola, responded instantly - leaping
from her chair and walking for the first time in years. But by autumn, her
condition fluctuated wildly between immobility and hyperactivity.
Sylvia’s case was especially poignant. Frozen for 35 years,
she remained mentally anchored in the 1920s. Her speech, mannerisms, and
references were all from the Jazz Age. Though she intellectually understood it
was 1969, she emotionally felt it was still 1926. She struggled to connect with
the modern world, finding it alien and unappealing. After ten days of lucidity,
she slipped back into a trance-like state and never reawakened, despite further
doses.
During the summer, the hospital transformed. Patients became
more animated, and the atmosphere grew less institutional. But by fall, many
began to regress. Nightmares, screaming, and emotional distress returned. Some
patients declined severely, while others managed to adapt - physiologically,
psychologically, and socially.
Sacks came to understand that awakening these patients was
not enough. Their nervous systems were damaged, and symptoms inevitably
resurfaced. True healing required more than medication - it demanded meaningful
engagement with life. For some, this meant work, like cobbling shoes. For
others, music, dancing, and singing became vital sources of connection and joy.
Relationships and community were essential.
This extraordinary episode in medical history inspired a wide range of artistic interpretations, including a play, a documentary, a film starring Robin Williams, a ballet, and an opera.
Click on the title to go to the review.
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