To start at the real beginning of the story, you have to go back to the years during and immediately following World War I, when an illness called encephalitis lethargica swept across Europe and America. The main symptom of this sleeping sickness was a comatose state that could last for months or even years. If the patients did eventually wake up the majority simply died during the acute phase , they were likely to find themselves in the distorted condition of extreme Parkinson's patients, with rigidly twisted limbs, little or no mobility and a strangely suspended or intermittent relationship to time.
Millions of people developed this illness in the years between and , and the tens of thousands of disabled survivors, many of them vital young people who had been struck down in their teens and 20's, were eventually warehoused in chronic-care facilities from one decade to the next, treated as the living dead -- though the nurses who fed them and kept them clean would often insist that there were real, full, intelligent personalities alive behind those frozen masks. Enter, in , Dr. Oliver Sacks.
London-born, the child of two physicians, he got his medical training at Oxford and then came to America -- first to San Francisco and then to New York -- to pursue neurological research.
As he goodhumoredly told his medical audience in December, he was soon banished from the lab for his clumsiness and general disorganization: ''I was always dropping things or breaking things,'' he confessed, ''and eventually they said: 'Get out! Go work with patients. They're less important.
His banishment took him to Beth Abraham Hospital in the Bronx -- or, as he calls it in ''Awakenings,'' ''Mount Carmel'' -- where he was struck by the figures of post-encephalitic patients, frozen in their odd postures and parked in wheelchairs around the hospital.
Sacks believed the nurses who said that there were vital sensibilities alive inside those statues, and he gathered the sleeping-sickness victims many of whom had been virtually ignored for 40 years into a community within the larger hospital. Eventually, after much internal and some external debate, he began to give them a new wonder-drug, L-dopa, that had proved remarkably effective in treating regular Parkinson's patients.
The course of the drug treatment -- its initial astonishing success, which brought these patients back to life, and its subsequent horrifying failure -- forms the basis of ''Awakenings,'' which Dr. Sacks published in In part because of concerns about patient confidentiality, and in part because he still had strong ties to his homeland, Dr.
Sacks brought the book out first in England. But the reaction he got from the British medical community ranged from silence to outright condemnation. Stung in particular by a review which accused him of making up the patients, the hospital and even the disease, he agreed to allow a single filmmaker, Duncan Dallas, to make a documentary about his patients for Yorkshire Television.
The resulting film includes newspaper articles and historical reports about the encephalitis epidemic, on-camera discussions with the young Dr.
Sacks looking, at that age, remarkably like a bearded Robin Williams , and, most poignantly of all, interviews with several of the Beth Abraham post-encephalitic patients. Until I saw the documentary, I didn't realize the extent to which Oliver Sacks's vision partook of Erving Goffman's groundbreaking sociological views.
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I failed to realize this even though, as I now notice, there is a grateful footnote to Goffman's ''Asylums'' embedded in the text of ''Awakenings. Sacks's approach had involved bringing his patients to see themselves not just as individual sufferers, but also as people reacting to other people, both fellow sufferers and caretakers, within the context of a surrounding institution, which was in turn located in a larger community of relatives, former neighbors and potential visitors.
What this meant, in the case of an extremely isolating disease like encephalitis lethargica, was that Dr. Sacks gave a social meaning -- a theatrical meaning, if you will -- to his patients' lives. In their search for a cure, in their hopes and expectations, and in their terrible disappointments, they became people with an audience: an audience of each other, at first, and eventually an audience of the wider world.
It was this fact, as well as the drug itself, which helped end their enchanted entrapment, their isolating, timeless slumber.
If you have read ''Awakenings,'' you will know that it is an extremely literary book. Sacks himself is a well-read, poetically inclined man who draws on a range of imaginative references, from John Donne to Virgil, from Sleeping Beauty to Alice in Wonderland; and at least one of his patients the man called Leonard L. Eliot in the journal he wrote describing his illness. The arc of the L-dopa story -- a magic potion that brings new life and then sudden downfall -- is one that is already familiar to us from Greek myth, fairy tale and science fiction.
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So there is a fantastical element already built into the tale. For this reason, among others, the effect of watching the documentary is profound. Through Duncan Dallas's intelligent editing of hospital tapes and his own footage, we see how a patient named Rose changed from a frozen, lifeless creature to a lively, personable woman and then returned to her frozen state now more dreadful than ever, because of the respite as the drugs ceased to work their initial magic.
We see a woman named Lola turn from a half-starved skeletal statue to a lively flapper, circa , and then we see her too -- horrified, perhaps, at the sense of her own altered body in a drastically altered world -- retreat to her former condition of living death. We watch Ed come to life -- Ed, the real man behind the character Leonard L. The documentary was apparently an essential research tool for the Columbia Pictures version of ''Awakenings,'' which was directed by Penny Marshall. In fact, you can see that certain scenes -- particularly the one of seemingly inert patients who suddenly come to life as a ball is thrown at them -- were taken directly from the Yorkshire film.
I call it ''the Yorkshire film'' to distinguish it from the commercial movie, but it would be more accurate to label it with the name of its bright, sensitive director. There are parallels to some other conditions such as near-death experiences and intraoperative awareness, in which patients can recall events that happened while they were under anesthesia. As with paradoxical lucidity, both were largely discussed anecdotally until a few scientists decided to study them more seriously.
That research helped validate patient experiences and, in the case of intraoperative awareness, led to clinical changes in anesthesia practices and the provision of psychological support where necessary. Work on near-death experiences might also contain hints of an explanation for paradoxical lucidity. In Mashour and his colleagues induced cardiac or respiratory arrest in rats. Something similar happens when the dynamics of neural activity are simulated in a computer model and the network nears collapse.
Such findings suggest the potential usefulness of a systems neuroscience approach, which considers not just neurons in isolation but how groups of neurons interact in a network. Applying a signaling molecule—an inhibitory neurotransmitter like GABA—to a single neuron, for instance, depresses neural function, but across groups of neurons GABA might inhibit other inhibitors—a neural double negative, in effect—and produce a net result of excitation.
Such a big picture perspective, then, can help explain unexpected results and might provide some neurobiological plausibility to a phenomenon as unusual as paradoxical lucidity. Beyond the scientific puzzle it presents, studying it brings some methodological challenges.
There are ethical concerns because late-stage dementia patients are not capable of informed consent. For family members, privacy concerns might be an issue. If, in fact, they can have an unexpected connection, and perhaps closure, with a loved one who has been lost for years, will they want those moments disrupted by scientists? The first studies will likely be observational, either via reports from caregivers or with automated recording devices to catch fleeting bursts of lucidity. For now, everything about paradoxical lucidity is speculative, but even with long odds, the possibility of useful findings is exciting, Eldadah says.
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