Laura Passin’s previous work for The Toast, which is lovely and always makes Nicole cry when she edits it, can be found here.
I don’t exactly remember when I first encountered the writing of the great neurologist Oliver Sacks–I think I was in my teens, and somehow I heard about The Man Who Mistook His Wife for a Hat, which remains the most charmingly titled science book not written by Mary Roach. I was a fan right away, for the reasons everyone is: the elegance of his prose, the depth of his empathy with his patients, the care with which he described the mysteries of the brain. His writing is as lyrical and witty as any great novelist, occasionally bursting into a perfect sentence:
“How vain!” Dana exclaimed, with admiration.
If you’ve heard interviews with Sacks, especially on Radiolab, where he was a regular, you know that this rueful charm was his signature mode. He was the man who could make you less frightened of the oddest things that could happen to a human mind, from hallucinating your dead wife (normal) to thinking your living wife might be your hat (not so normal).
I’m not going to rehearse Sacks’s brilliant career here; many others have done that more usefully than I can. Instead, I want to tell you what I do remember, searingly: the first time I read Awakenings, when my mother was seemingly lost inside the dementia and aphasia of Parkinson’s disease.
***
When my mother was in the most mysterious phase of neurodegenerative illness–when she could climb stairs but not walk down a hallway, when she could sing but not speak–I told my best friend that I felt like a poorly written Beckett character. Things would be said (by me), and actions would be taken (by me), but none of them seemed to have any gravity. I experienced this time with my mother as a profound failure of causality: we were no longer in a world where cause led to effect.
LAURA:
Mom, do you want to get up?
The mother nods.
LAURA:
Okay, I’ll get the walker and then count, and you can stand up on three. Okay?
The mother nods.
LAURA:
One… two… three!
They do not move.
In Awakenings, Sacks characterizes parkinsonism as, fundamentally, a problem of agency: the link between forming intentions in your mind and carrying them out with your body is radically compromised. The ability to initiate and control movement deteriorates, which means a person can get frozen in her body, no longer an agent in her own life. If there are also cognitive impairments (as there were for my mother), the parkinsonian patient can appear utterly lost in an internal world.
Once, about two years before she died, I was spending time with my mother in her house; we were the only ones home that afternoon, and we were having a pleasant enough time watching tv. Suddenly, she pitched forward and fell out of her chair, flat on the floor. At first, I was simply terrified that she might have hit her head, and relieved when I found she had not. But it turned out, as it so often did in those days, that I was afraid of all the wrong things: the fall wasn’t the issue. Getting vertical again was the real crisis. I wasn’t strong enough to simply haul an adult woman off the ground, but that wasn’t the issue either–she could still lift her weight, with help. The problem was more profound: she had no idea what sequence of movements would get her upright and back into the chair.
Take a moment and think about your body, its limbs, its weight. Imagine lying face down on the ground. Imagine you can only move one segment of your body at a time, like a marionette enchanted by an incompetent wizard. Imagine that after you move, say, your left calf, you need an entire minute to rest. Imagine you cannot hold your core upright, so you always need to be propped against something. Are you there? Flat on the ground, poorly put together, unoiled? Now imagine: how do you get your body into a chair?
I think it took about an hour for the two of us to get my mom back to relative safety. Every few minutes, I’d have an internal debate about whether to call 911, but it seemed so ridiculous an emergency: the chair was right there, and we both knew there was a sequence of motions that would make this work, somehow, if her nervous system could just coordinate its bursts of dopamine well enough. I feared that if I called for help, I’d have to admit my own lack of agency; I didn’t know if I could survive my mom’s illness after that.
ESTRAGON:
Well, shall we go?
VLADIMIR:
Yes, let’s go.
They do not move.
***
Miss D. lays stress on the fundamental distortions of Parkinsonian space, on her peculiar difficulties with angles, circles, sets, and limits. She once said of her “freezing”: “It’s not as simple as it looks. I don’t just come to a halt, I am still going, but I have run out of space to move in… You see, my space, our space, is nothing like your space: our space gets bigger and smaller, it bounces back on itself, and it loops itself round till it runs into itself.”
(Awakenings)
The “awakenings” in Awakenings are unforgettable, but they are not what made the book crucial to me: my mother had a different illness from Sacks’s patients, with their near-miraculous reactions to L-DOPA. Medication was not going to free my mom from the shrinking horizon of her body. What changed everything for me was the curiously philosophical appendix called “Parkinsonian Space and Time,” in which Sacks tries to make sense of the festination and freezing that are characteristic of Parkinson’s and related disorders. In this brief chapter, Sacks asks why people with these illnesses move so strangely–not why in a neurochemical sense, but why in a phenomenological sense. How do they experience their own movement in space-time?
The question itself is a rather lofty one, with its invocation of relativity, but it turns out that it’s just right, as Miss D. insists in the passage above. Sacks consistently finds that his patients are literally experiencing space and time differently from everyone else: one, Mr. L., describes a hallway he has just lunged down: “It’s got a bloody great hole in it–they been excavating or something? I’m walking along, minding my business, and the ground suddenly falls away from my feet at this crazy angle, without reason. I was thrown into a run, lucky I wasn’t thrown flat on my face.” After Sacks and a nurse walk Mr. L. down the same (perfectly normal) hall, demonstrating that it has no gaping hole, he said: “I could have sworn it suddenly dipped, just as I said. It was because it dipped that I was forced into a run. You’d do the same if you felt the ground falling away, in a steep slope, from under your feet!”
What made Sacks a great writer (and, I suspect, a great doctor) is that he took Mr. L. at his word: you would do the same if the hallway in your hospital suddenly became a hellmouth. What he takes from this alternate reality–what he conveys in so many of his great case studies–is not a lurid thrill at the exotic mental experience, but an urgent need to reassess what we know about being human. Parkinsonism becomes, in his eyes, not a pitiful tragedy, but “a systematic disorder of space-time parameters… a dynamic, field, or relativistic disorder.” His patients were navigating Einstein’s universe, while the rest of us were cruising through Newton’s.
***
Maybe it’s my own idiosyncrasies talking, but nothing could have had a greater impact on my ability to connect with my mother than to think of us as living in slightly askew universes. Approaching her body’s inability to cooperate not as stubborn refusal (why won’t you do this, why can’t you do this?) but as a warping of her world made me less angry, less impatient (what will help you do this?). After all, my universe had been disturbed, too: I was becoming a mother to my mother, fundamentally changing my own sense of time, of self. Once, she watched me take my first steps; now, I was watching her take her final ones. It bounces back on itself, and it loops itself round till it runs into itself. I was more useful to my mother when she was ailing because I read Sacks’s work on parkinsonism; I was kinder to her as she was dying because I read his work on aphasia.
When I read, earlier this year, that Sacks was terminally ill, I found myself having flashes of grief for this stranger who helped save my life. Anticipatory grief is a strange animal, as I knew from my mom’s dying years. The knowledge that death is coming, but not for you, is an uneasy knowledge. It makes your limbs heavier; it makes the dying person seem nearer, and everyone else seem farther away, mirage-like. My breath would catch when I caught Sacks’s name in the news or on the radio; the walls would shiver. It’s not news: everyone who’s ever meant anything to you, near and far, will die. It’s just terrifying. How do you stand back up, when the world keeps falling away?
It turns out Sacks had already answered my question, years before I was born:
Complementary to the artifices and algorithms which can so help Parkinsonian patients is the real world, infinite in variety, aspect, and depth, infinitely concrete, infinitely metaphorical, infinitely formal yet infinitely expressive, infinitely ordered yet infinitely free. The real world, whether in Nature or Art or social relationship is–finally–the only thing which can give the Parkinsonian (which can give any of us) that fullness, ease, and spontaneity of action which constitutes happiness, health, freedom, and life.
(Awakenings)
That was his gift: he made us see the real hiding inside the surreal, the universal truth lurking in a hallucination. How vain! How infinitely free.
