Awakenings, by Oliver Sacks

Awakenings

Awakenings is the book upon which the movie of the same name starring Robin Williams and Robert De Niro was based. It is a collection of case histories by neurologist Oliver Sacks, along with chapters of commentary and background.

These particular patients of Sacks suffer from an extreme form of parkinsonism. They are amongst the millions who were victims of the encephalitis lethargica epidemic that spread throughout much of the world for about a decade starting during World War I (and which is overshadowed in historical memory by the extraordinarily lethal influenza pandemic of roughly the same time period). In some cases, typically starting months or years after the disease had seemingly run its course, encephalitis lethargica patients developed parkinsonism symptoms that left them barely if at all functional.

Many of these patients had to be institutionalized. They remained conscious, but their control over their bodies lessened to where they were catatonic for much of the time. In some ways they were like someone who is fully paralyzed—a functioning mind trapped inside a non-responsive body.

It was not exactly like being paralyzed though. For one thing, most of them still had periods where they could move at least some. So their ability to will their body to do what they wanted was infrequent and intermittent, but generally not non-existent.

Also, their perception of the passage of time changed dramatically to fit their condition, which I don’t think has an analogue amongst people who are paralyzed.

This is one of the most fascinating things discussed in the book. As their bodies slow down, time keeps pace for them. In some ways this is a blessing. Most of them are trapped like this for decades—which you’d think would be horrible to experience—but to them it feels like very little time is passing.

For example, in one incident in the book, Sacks notices a patient holding his arm out rigidly in front of him. Awhile later he happens to look at the patient again, and after at first thinking he hasn’t moved, he realizes the patient’s hand is maybe an inch or two closer to his head. After a great deal more time passes, the hand makes contact with the head. Sacks has the impression that if one could observe the movement with time lapse photography, it would look like someone reaching up to scratch his head.

During a subsequent period when the patient is more functional and is able to communicate, Sacks asks him about this super slow motion arm movement, and the patient confirms that he was indeed scratching his head. To him, though, it was not in slow motion. He experienced it as if the motion had taken place at a normal speed, and not taken the hours that it actually had.

Another interesting manifestation of this strange fluidity of time is that when some of these patients were finally “awakened” after decades, they mostly didn’t have to relearn the physical movements and skills they had done without for all that time. As Sacks notes, when someone suffers, say, a broken limb, when the cast comes off and they start using the limb again, there is typically an awkward period where they have to get used to it and it takes some time to reestablish the habits that enabled them in the past to use it unconsciously in various ways. With these patients, though, there was no such “rust.” It was as if the time they’d been unable to do certain things had not been long enough to break the habits or make it feel unnatural, and indeed they had experienced it as quite brief like that.

Sacks is struck by how young the patients look, how little it looks like they’ve aged since entering this period of suspended animation.

That makes it sound like it’s not just a matter of how they perceived time in their minds, but that somehow only a short period of time passed for their bodies as well. But can that be? Sacks doesn’t address whether this phenomenon went beyond the cosmetic, but it’s hard to imagine it did. I mean, certainly he would have noted it if the actual cellular changes that lead to people dying of “old age” greatly slowed down for decades for these folks and as a result they lived decades longer than the normal human life span.

Anyway, as those who’ve seen the movie know, the situation changes with the introduction of the drug L-DOPA, which “awakens” these patients.

The movie, not surprisingly, is greatly oversimplified and fictionalized (at least if I’m remembering it correctly; it has been many years since I saw it). It presents the patients pre-L-Dopa as being more consistently catatonic than they were (not to mention more “presentable” to a movie audience; in real life evidently most of them drooled incessantly, and for some reason as a result of their condition their skin and hair were very greasy). Then it presents them after taking L-DOPA as being—for a while at least—very “normal.”

The real patients did indeed go from a high level of passivity to a high level of activity, but it differed from patient to patient, and even early on when things were going best for many of them they still were “off” in one way or another. They didn’t go from being inanimate objects to people who were indistinguishable from regular folks. The changes in some cases were dramatic, but not as dramatic as that.

Again if I’m remembering correctly the movie is a bit misleading about Sacks’s use of L-DOPA. This was a drug that had been used for a while for parkinsonism, and was being hailed as a miracle drug. It’s true that it hadn’t been used much if at all for specifically these peculiar patients with post-encephalitis lethargica parkinsonism, so Sacks was a bit of a pioneer there, but it was a logical use of the drug, not something extraordinary that Sacks stumbled upon.

Indeed, in real life Sacks took a surprising amount of abuse for not being more gung ho about L-DOPA. When he published his findings and noted all the red flags that gave him reason for concern, he was lambasted by his colleagues in a very non-scientific manner. They wanted to be a part of this amazing medical advance, this miracle cure, and here he was being a party pooper about it, saying that there seem to be a lot of problems with it.

Of course he was right. L-DOPA proved to be a very mixed blessing for patients, though it didn’t necessarily have the same pros and cons for all patients that it had for the post-encephalitis lethargica patients.

As Sacks describes it, once the dosage was increased sufficiently, most patients underwent a major “awakening,” maybe not to normality, but certainly to something closer to it than they’d experienced during decades of near-catatonia.

Pretty much from the beginning for most of them, though, there were signs that things weren’t quite right, and they only got worse as time went on. Patients went from being extremely passive to being uncontrollably and unpredictably manic. They developed terrible tics to where they were jerking and convulsing so violently they had almost as much difficulty functioning as when they’d been like statues.

Maybe the most disturbing thing, though, is the mental effects it had on many of them. It changed their personalities, affected their sanity.

My impression is that when they were trapped inside their uncooperative bodies for decades, it was still “them”—their minds were still fairly normal. But the L-Dopa resulted in schizophrenia-like symptoms, hallucinations, paranoia, manic depression, etc. They seemed a lot more messed up mentally.

Naturally, Sacks then attempted to titrate the dosage. But that proved largely impossible. There was no middle ground where you got the awakening without the side effects. When the dosage was lowered to try to get back to that early period when there was the good with only minimal warning signs of the bad, the good gradually lessened but the bad remained, until the dosage was taken well below where the initial awakening had occurred—or reduced to zero—in which case the side effects generally went away, but so did all the good.

In fact, the patients were typically in worse shape than before they’d ever had their first dose of L-DOPA.

It varied greatly from patient to patient, though. Sacks kept altering the dose level, taking them off L-DOPA periodically and then putting them back on, etc., but it was hard to make sense of the results. The general trend was that things typically got worse as the body adjusted to the drug, but anything could happen in an individual case, including for the same patient at different times.

I wouldn’t say the drug turned out to be a washout. It helped a lot of people a great deal for a brief period, and helped a small number of people in a more sustained way. But it certainly wasn’t the godsend—for these patients at least—that so many people hoped it was and allowed themselves to believe it was.

But—as the movie also depicts—there are things independent of L-DOPA that can sometimes “awaken” these patients as well. Alas, such improvements are limited and fleeting, but they’re real.

There are things that reestablish in some small way the proper communication between mind and body, things that somehow change the patient’s pace or rhythm in a way that enables an otherwise impossible level of functioning.

Music has that effect on some patients. Moving in a rhythmic, dance-like manner helps some of them.

But mostly it is human connection that helps. Without human connection they go into a funk that just happens to be a lot more extreme than for most people who are lonely or lack purpose in their life, to where they rarely even move. But Sacks recounts how a certain loved visitor can bring a patient partly out of her shell.

Sometimes physical human contact proves to be the key to enabling a patient to properly pace himself. Often these patients are either as rigid as a statue, or, under the influence of L-DOPA, they frantically race around in a manic fashion and hurt themselves, but if another person lays a hand gently on their arm and then walks at a normal pace, the patients will be able to adjust appropriately and walk at the same pace as long as they are physically touching.

One of the appendices of the edition I happen to have read (from 1990) is on the adaptations of the book in the form of plays and movies, especially Sacks’s experiences consulting on the Awakenings film.

I enjoyed that section. He admits that the film strays a great deal from reality in numerous respects—he doesn’t mention that whole subplot about how the movie version of him has to be coaxed out of his shell by a nurse who’s interested in him, giving him his own “awakening,” but I suspect that’s largely made up—but he has no problem with the inaccuracies. He understands that it’s not intended as history, but as a fictional story based on actual events.

The important thing, he says, is that the depiction of what it’s like to suffer from this condition was captured extremely well, and in his opinion it doesn’t really matter that a lot of other stuff was changed to tell the story the director Penny Marshall wanted to tell.

De Niro, he observes, is amazing. Everything you’ve ever heard about his work ethic, his obsessive studying of his roles, his ability to truly embody the person he’s portraying, etc. is all accurate. Sacks is in awe of him, and of the way he nailed the essence of how patients experienced their illness, their awakening, and the aftermath of the awakening.

But what may be a bigger surprise is that he has almost as much praise for Robin Williams as an actor. For one thing—though this is only one small part of being a great actor—Williams is an uncanny mimic. Sacks recounts how, even though ultimately the doctor character in the movie was altered in various ways from Sacks himself, in the early stages of the preparations, after Williams had spent a modest amount of time with Sacks observing him, he launched into a dead on impersonation of him, duplicating his speech pattern, body language, etc.

The writing in this book is “typical” Sacks in that he advocates for a humanistic approach to medicine as something that is as much an art as a science, and he engages in a lot of flowery rhetoric, and references to literary figures, philosophers and such.

I won’t pretend I could follow all of it. What I’m not certain of is how much substance there is to what I couldn’t follow. I’m not saying he’s consciously bullshitting, but I think a lot of times he has vague ideas that he can only express in vague, poetic, metaphorical ways, and it’s possible some of those ideas would prove to have little or no merit if we could pin them down.

He multiple times speaks of the effects of L-DOPA as being an instance of, or analogous to, quantum mechanics, as phenomena that are not governed by the kind of conventional, Newtonian science that otherwise prevails in the macro world.

Maybe, but I don’t see that the evidence comes close to establishing this. I suspect he’s making an ontological/epistemological error.

The really peculiar thing about quantum mechanics is not that it makes things difficult or impossible to predict. A lot of things that presumably are governed by normal causal laws are unpredictable. If I toss two dice ten feet up in the air, given their position, speed, and momentum, the nature of the surface they’ll land on, etc., there is one and only one position they can end up in, but there’s certainly no way for me to predict what that is. That kind of unpredictability is an epistemic limitation.

But with quantum mechanics, at least as far as scientists can determine, there is apparently an ontic uncertainty. Even with exact knowledge of all relevant factors we wouldn’t be able to predict specific outcomes, because insofar as there are causal laws governing quantum phenomena they seem to be irreducibly probabilistic rather than deterministic.

Now what’s more likely with something like the effects of L-DOPA? Certainly this could be a case of inherent uncertainty and unpredictability like quantum mechanics. But I would think it’s far more likely that it’s like the dice roll—deterministic, but far too complex to be humanly predictable. Or at least the evidence is insufficient to make any grand pronouncements that this is an area of ontological uncertainty.

I suspect there’s a lot of that kind of thing going on in this book. Like when Sacks interprets something in science or medicine as some kind of confirmation of something said by a philosopher of the 19th century, well, I suspect that’s only the case if you put a very loose, poetic spin on the philosopher’s words.

This is one of Sacks’s earliest books, his second. I think his writing gets better in later books. In those later books he retains the appealing willingness to go beyond the most concrete, conventional understanding of cases, and the appealing humanistic tendency to always be conscious of a patient’s personhood rather than seeing them as a piece of meat that responds predictably to various stimuli, but there’s a bit less of the vague, lofty rhetoric and amateur philosophizing. Or insofar as it’s there, maybe it’s a little better quality.

I liked Awakenings and would recommend it, but I think some of Sacks’s subsequent books are better. The Man Who Mistook His Wife For a Hat is probably still the best book to start with for those who are new to his work.

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