Living on a knife’s edge

Cover of Oliver Sacks' book Awakenings
Oliver Sacks – Awakenings

What most struck me about reading Awakenings was how little I knew about Parkinsonism. I thought it was just a shaking disease, a “fact” I “learned” from the two most famous people with Parkinson’s, Muhammad Ali and Michael J. Fox.

In truth Parkinson’s is so much more; it’s probably among the most variable, elusive disorders known to man. Common symptoms include rigidity, catatonia, masking (expressionless face, voice, or posture), blocking, sleep disorders, and much more. Clinically called akinesia, but more expressively described by Sacks:

There are many different forms of akinesia, but the form which is exactly antithetical to hurry or pulsion is one of active retardation or resistance which impedes movement, speech, and even thought, and may arrest it completely. Patients so affected find that as soon as they ‘will’ or intend or attempt a movement, a ‘counter-will’ or ‘resistance’ rises up to meet them. They find themselves embattled, and even immobilized, in a form of psychological conflict — force against counter-force, will against counter-will, command against countermand.

However, this is only one side of Parkinsonism, as the quote above hints at. The “hurry or pulsion” (clinically akathisia) is actually the first quality of Parkinsonism described in the 1800s. Hurry is also called in the literature festination, an adroit concept that Sacks calls “perhaps the most characteristic feature of Parkinsonism.”

Festination consists of an acceleration (and with this, an abbreviation) of steps, movements, words, or even thoughts — it conveys a sense of impatience, impetuosity, and alacrity, as if the patient were very pressed for time; and in some patients it goes along with a feeling of urgency and impatience, although others, as it were, find themselves hurried against their will.

Thus it seems to me that the major characteristic of Parkinsonism is a struggle with an inner force that is not one’s own, that alternately urges activity or confounds it, with little in-between (“in-between” being a state of control — the state we think of as normal). It’s almost impossible to imagine what this must be like. Sacks is an extremely empathetic physician and writer, and he takes pains to try to describe what it’s like to have Parkinson’s. However just as often, its his patients themselves who provide the most eloquent metaphors (for metaphor is the only vehicle we really have for understanding this).

[It is] like being stuck on an enormous planet. I seemed to weigh tons, I was crushed, I couldn’t move. — Helen K.

I think of a map; then a map of that map; then a map of that map of that map… Worlds within worlds within worlds within worlds… Once I get going I can’t possibly stop. It’s like being caught between mirrors, or echoes, or something. Or being caught on a merry-go-round which won’t come to a stop. — Rose R.

Sacks’s patients, whose case histories he recounts in Awakenings, are a special group of Parkinsonian patients called post-encephalitics. They are the survivors of the great sleeping-sickness epidemic of 1916-27, which I’d never heard of before. (Mencken: “The epidemic is seldom mentioned, and most Americans have apparently forgotten it. This is not surprising. The human mind always tries to expunge the intolerable from memory, just as it tries to conceal it while current.”)

The sleeping-sickness, actually a viral disease called encephalitis lethargica, struck no two patients in exactly the same way — this baffled the medical community. Many sufferers slipped in to irreversible comas, while others became so aroused that they died of insomnia. Those who didn’t die tended to fall gradually into a deep Parkinsonism, especially of the “frozen” variety, and had to be institutionalized. Sacks epitomizes their dreadful state with a quote from Donne: “As Sicknes is the greatest misery, so the greatest misery of sicknes, is solitude… Solitude is a torment which is not threatened in hell itselfe.”

I ceased to have any moods. I ceased to care about anything. Nothing moved me — not even the death of my parents. I forgot what it felt like to be happy or unhappy. Was it good or bad? It was neither. It was nothing. — Magda B.

This is when Dr. Sacks appears. In 1966 he arrived at a hospital in New York, where he oversaw a ward of about 80 post-encephalitics. He soon learned about a new so-called “miracle drug” called L-DOPA, which promised to reverse the effects of Parkinsonism. After putting it off for two years, he began starting his patients on it in 1969.

L-DOPA’s effects on the post-encephalitic patients were instant and incredible; it generated the titular “awakenings” that have become almost famous, much more famous than what really happened. In actuality the awakenings were short-lived, and patients soon reacted to the drug in all sorts of bizarre and different ways, with the common thread that each saw a resurgence and even intensification of Parkinsonism. Many had to stop taking L-DOPA, after which they became even more confined than they’d been pre-DOPA. I was reminded of Charlie Gordon’s fate in Flowers for Algernon: was it worth it to experience the highest of highs, only to sink back to the depths below, or was it better to have gone through none of it at all?

Sacks takes us through the case histories of a selection of these patients, and he shows us how they progress through three stages of L-DOPA. We experience their explosive reactions to the drug (“awakenings”), their “tribulations” with it after the adverse reactions appear, and for some, “accommodations” — these patients managed to achieve a homeostatis on L-DOPA that gave them a somewhat-normal life again.

For the latter, these immensely strong individuals, the journey from encephalitis through L-DOPA strikes me as a characteristic example of Joseph Campbell’s hero’s journey — only for them, the period of wandering in the wilderness lasted decades. Alternatively, the three-stage sequence of response to the drug could be its own, highly-compressed example. The post-encephalitic Parkinsonian hears the siren call of L-DOPA, which calls her forth into an uncharted space, where after an initial elation, she endures the harshest tests of her will and character, to ultimately persevere and return to the sphere of Parkinsonism, eternally wise and unbreakable.

Sacks reaches his greatest heights when discussing what the existence of Parkinsonism (and disease generally) means for our conceptions of life and “being-in-the-world.” Reading him made me grateful for my capability to move in and manipulate my own space — so easy to take for granted.

The terrors of suffering, sickness, and death, of losing ourselves and losing the world, are the most elemental and intense we know; and so too are our dreams of recovery and rebirth, of being wonderfully restored to ourselves and the world.

Common to all worlds of disease is the sense of pressure, coercion, and force; the loss of real spaciousness and freedom and ease; the loss of poise, of infinite readiness, and the contractions, contortions, and postures of illness: the development of pathological rigidity and insistence.

Health is infinite and expansive in mode, and reaches out to be filled with the fullness of the world; whereas disease is finite and reductive in mode, and endeavors to reduce the world to itself.

But what I gained most from Awakeningswas learning about the greatest gift one can give to a person with Parkinson’s: companionship. It is togetherness that frees them from their inner constraints, so they may move freely again. Sacks describes patients who are rigid and unable to walk, until they receive the slightest touch — this seems to revive them, recall them to the world, and impel them to get up and go. Patients who normally struggle to walk without festinating can swagger gracefully down the corridors if they are walking with someone.

I can do nothing alone. I can do anything with — with music or people to help me. I cannot initiate, but I can fully share. You “normals,” you are full of “go,” and when you are with me I can partake of all this. The moment you go away I am nothing again. — Edith T.

When you walk with me, I feel in myself your own power of walking. I partake of the power and freedom you have. I share your walking powers, your perceptions, your feelings, your existence. Without even knowing it, you make me a great gift. — Edith T.

Feeling the fullness of the presence of the world depends on feeling the fullness of another person, as a person; reality is given to us by the reality of people; reality is taken from us by the unreality of un-people; our sense of reality, of trust, of security, is critically dependent on human relation.

How profound, how amazing it is to be “full of ‘go.'” This is a lesson that applies to all aspects of life: if you have something, some quality or flair, that others don’t, do your best to use it and treasure it and share it while you can. Make connections. Envelop yourself in fullness and reality.