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.
This was so beautiful. Thank you. I’m going to read his work.
This is so wonderful. Thank you for writing it. My stepmother has advanced Parkinson’s and I think my dad should probably read this.
Thank you. I hope it is helpful to your dad. My heart goes out to you. <3
Thank you for sharing this, Laura–it’s such a fantastic tribute to the power of Sacks’ work.
HI I DIDN’T KNOW YOU HUNG OUT HERE SOMETIMES. < 3
eta: I refuse to read the piece today because I need things to read later this week as treats, and I am SAVING IT. like CHOCOLATE.
I lurk mostly as most of the things I have to say are ‘yes, this is great’ and ‘I agree with you’. Shhh. Howdy!
This is a fitting, lyrical tribute to both Sacks and, I think, your mother as well. Thank you very much for sharing.
Really great piece. But I don’t understand what Sacks means in the last paragraph. What does he mean by ‘the real world’ in that context? Is it reality as a thing that exists independently of our brains and perceptions?
Thank you! My understanding of what Sacks means there is informed by what I’ve tried to highlight in general: his complete refusal to dehumanize people who are ill or suffering. Awakenings was written in the 1970s, when the stigmas surrounding mental illness and disability were even greater than they are today, and when “lock them up in an institution” was a normal course of “treatment” for the chronically ill or disabled. The “real world” here, I think, is the world of humanity; even a person who is seemingly locked into a deep illness has a mind, a personality, a sensorium — but they may not have a way to communicate that they do. Long after my mom stopped being able to speak in sentences, she could sing along to her favorite songs — she still had mental access to the “real” world, even when the rest of us couldn’t interpret it.
I don’t know if that clarifies anything or if I’m just rambling at this point, but my reading of Sacks’s body of work is that perception shapes our experiences of reality, but reality does indeed exist outside of our brains and perceptions. That’s why he sets those pairs of opposites together: concrete, metaphorical, ordered, free. It’s both. It’s always both.
If you haven’t yet read his “The Island of the Colour-blind”, I recommend it. It’s in two parts, where the first is about the Pacific island Pingelap where a huge percent of the inhabitants are completely colour-blind and the second part is about two unique neurological disorders on Guam. Those disorders are similar to Parkinson’s, and he really delves deep into movement, fluency and intention. The patients are able to walk fluently if someone else starts them up, and if they can’t talk they can still sing. This may be my favourite out of his books, it just hits a very specific note.
It’s different from his other books, in that he didn’t really make the trip as a doctor. Sure, he doctors a little when the need arises and (with permission) examines people when he gets the chance, but it’s more of a medical (and botanical) travel story than a case description
He allows himself to give into a sense of wonder in addition to the usual curiosity, since there are no answers and he doesn’t actually have any medical responsibility. He keeps going on about these weird plants too, a really old species left over from dinosaur times, and waxes poetic on “deep time”. I would not allow anyone but him to write this kind of book, but this is great. It’s a really beautiful book about evolution and time and glorious biology, and kind of about fluency in a greater sense too I think? Movement fluency, the flow of time, the Pacific ocean, the adaptability of human beings and so on. The stuff about psychological fluency also ties nicely into his book about music, Musicophilia.
Oh who am I kidding I love all his books like life itself and he died before I could send him a nice letter I was working on 🙁
Thanks for your explanation! I understand better now. I wonder if Sacks wrote anything about the less dramatic but equally overwhelming way depression distorts reality. I must investigate his back catalogue – I’m embarrassed to admit that up until relativelt recently I kept confusing him with Oliver James :/
thank you for an eloquent tribute; i also started reading Oliver Sacks in my teens and have always been struck by how much he maintains human perspective for everyone, how he never others his patients. he was a brilliant and good human.
This is the second thing I have encountered this week that has made me feel I need to explore Sacks’ work, especially as I grapple with my own feelings of disorientation in the universe, not due to physical disabilities but mental struggles and alienation. Certainly interesting as well as I head into learning more about pastoral care and the black holes and time warps that can be created by religious teachings and beliefs. Thank you for helping me to think about this in a different way.
the black holes and time warps that can be created by religious teachings and beliefs
I would love to hear more about this idea!
I am seeking ordination in a mainline Christian church, so obviously I feel that faith can be very important and positive. But when I talk to or read about people who have been hurt by the church, or talk with other people who provide pastoral care, it becomes evident that religious teaching can create trauma or sources of fear and turmoil that can last a lifetime. Ideas about sexual purity are particularly damaging. But there are also things like feeling you are being punished by God if something tragic happens, or feeling you have done something God can’t forgive. There are also the people who feel they can exercise power over others in their church because they have been anointed by their gender or speaking ability or being part of a powerful family. People can fall down these mental holes and their whole lives can be put on hold and/or destroyed.
I don’t know if I have ever though of it in particularly those terms before, but I have thought of my own trauma, memory-wise, as a black hole around which the emotions I struggle to manage rotate. It makes sense as a metaphor. Your Einstein universe language triggered the idea in my head.
This is really lovely. Thank you.
Oh Laura, this is so lovely. Thank you.
LAUREN <3
<3
Sacks on the phenomenology of mind has always been interesting to me, and maybe the closest thing I can think of to formative — I read the Man Who Mistook His Wife For a Hat when I was in high school (and subsequently gave it to my brother, who’s now about to enroll in an MD/PhD program in neuroscience because of it!) and while the examples are extreme, they’re still part of a spectrum that illustrates a profoundly important truth for me, which is that people don’t do things — no matter how weird or ordinary they seem — for no reason. The first and most important thing you can do to understand another person is to try to see how they see the world, and I think that I’m deeply grateful to Oliver Sacks for demonstrating that so clearly and humanely.
I love love love the newtonian vs. Einsteinian space thing, and if Sacks write it instead of you, I love that you brought this to my attention.
the black holes and time warps that can be created by religious teachings and beliefs
I would love to hear more about this idea!
LAUREN <3
I’ve been that person on the floor, and it is so frustrating to try to get vertical again. I “know” how, but my left side, affected by MS, isn’t able to obey my brain. It is both terrifying and exhausting.It’s difficult to explain. Dr Sacks was able to show how hard it is.
I’m so glad you were able to help your mom.
Thank you for this comment.
Thank you for this comment.
Beautifully stated. And thank you for writing it, and expanding the universe a little bit more.