I felt it a second time in the coffee shop. The rush of electricity, but with no motorbike to blame it on. “Um,” I said, and then: “I think this might be serious.”
“I know,” said Sarah. We got up to go, coffee half-finished. We both understood that I couldn’t waste any more time than I already had.
Wasting time is relative, of course. When I look back on those early days, I realize that it is the privilege of an explorer to name the things they find. Some get to name places and creatures, strange rock formations and hidden bays. I get to name sensations. Generally, yes, these sensations have names of their own already, but I can make them mine with private terminology—and it is the private terminology that lasts.
In retrospect, those first three weeks of growing unease gave me so many new names to play with. Pop-Tarts: that’s a name that’s stuck. I still talk about Pop-Tarts when my hands feel tight on waking. I still talk about radio static in my feet and arms, and when it gets bad I tell my wife that I have been set to vibrate—a private vibration that only I can feel, spreading down my arms and my thighs, warm and annoying because it hides the buzz of my mobile phone when it alerts me to a call or reminds me to take a pill.
One thing I have never renamed, however, is that vast rush of energy down the spine. The medical name for it is Lhermitte’s sign, and it is Lhermitte’s sign I have chosen to stick with. It was not my first symptom, but it was the first that Sarah and I tracked down and looked up, the very first private incidence of neurological wildness that I was surprised to discover had already been mapped. “An electrical sensation that runs down the back and into the limbs. In many patients, it is elicited by bending the head forward.”
Lhermitte’s, I now understand, suggests a lesion, or scar, on the spinal cord. If I had ventured this far down the Wikipedia article I would have discovered that this, in turn, can be caused by a lot of things: enough at least to allow me a few more weeks of sweet denial before I saw a neurologist.
But denial suddenly wasn’t so sweet anymore. It had become flimsy. Partly because Lhermitte’s was too bizarre and forceful an imposition ever to settle into a comfortable space in my life, and partly because of something I read when I first looked Lhermitte’s up, a detail that seemed to speak with a worrying clarity about the world I was entering: the landscape of the central nervous system.
Lhermitte’s sign, the passage explained, is not actually a sign, but a symptom, since a sign is objective evidence of a disease that should be apparent to everyone, but a symptom, like Lhermitte’s, is subjective—a private madness that cannot truly be shared. Furthermore, the sensation was first described by neurologists Pierre Marie and Charles Chatelin in 1917; Jean Lhermitte, a neuropsychiatrist, only came to it three years later—and only properly wrote it up four years after that.
A tiny oddity, but still: Lhermitte’s sign is not really Lhermitte’s sign. Welcome to neurology.
The Man Who Couldn’t Open a Door: A guide to proprioception
Before I had my own neurologists, I had Oliver Sacks.
Sacks feels like the best kind of personal physician, his gentle voice speaking to you straight out of the page as he discusses the many cruel deficits that neurology trades in. My favorite of his books may look like collections of Sherlock Holmes stories—and the case histories they present have titles that any detective would be happy to have tidied away in the files: The Man Who Mistook His Wife for a Hat, The Visions of Hildegard—but these mysteries are solved by kindness and quiet perception rather than violence and the clanging arrival of justice.
Over the years I would occasionally read that Sacks was not always considered to be a great clinician. Some have argued that he exploited his patients by turning them into literature. I found that last criticism false as soon as I became a neurology patient myself. Sacks gives the newly diagnosed permission to find their predicament interesting and human. He says: This is not the end of experience, but the beginning of a new strain of experience. He says: What is happening to you has value.
At times in the early months of my own neurological confusion, when I was fumbling with handles and light switches, I would imagine myself as a character in one of Sacks’s narratives. “The Man Who Couldn’t Open a Door,” perhaps, or “The Case of the Misplaced Hands.” But what I did not realize was that Sacks had already tackled this problem I was having—albeit from a far more frightening vantage point. What does it mean to misplace your body? he asks in a story titled “The Disembodied Lady.” It turns out that the stagy Wellsian nightmare conjured in that title is well earned. To misplace your body is the stuff of horror.
“The Disembodied Lady” describes an encounter between Sacks and a patient who has lost not just her hands but her entire physical being. Christine, a young computer programmer, is admitted to hospital to have her gall bladder removed. On the first night on the ward she dreams that she is losing control of her limbs, and when she awakes, the dream has come true. Over the course of a few days, simply standing up becomes impossible, while her hands start to wander by themselves if she isn’t looking at them.
A complete disintegration of her body’s awareness of its own spatial reality is under way. There is no cure. But with time, Christine is able to make a partial functional recovery through compensating systems. When Sacks leaves her at the end of the narrative, she is guiding each movement by sight—an exhausting, debilitating workaround. “I feel my body is blind and deaf to itself,” Christine tells Sacks. “It has no sense of itself.”
“The Disembodied Lady” exists within the strange spook country of proprioception, the means—along with vision and the balance organs of the vestibular system—by which the body creates a sense of itself in space. Proprioception is a deeply physical business, and yet it’s simultaneously a largely intangible one. It is not just the brain’s idea of where the body is from moment to moment. It is part of what makes a person’s physical experiences feel real and personal in the first place.
This process depends upon sensory receptors called muscle spindles that are attached to individual muscles throughout the body, alongside the motor neurons. The motor neurons convey signals from the brain telling the muscles to move. The sensory neurons relay information about movements back to the brain, so that the brain can then construct an idea of exactly where everything is—a sense of what the hands are doing, where the feet are resting, whether the back is bent or straight, and even whether a person is speaking too loudly. A proprioceptive deficit is therefore an intelligence deficit: it means that the messages being sent back to the brain are not being properly understood.
Most people have little need or opportunity to acquaint themselves with proprioception, for the same reason you don’t often ponder the dance of electrical energy and resistance that occurs when you fire up your kettle. Generally, this stuff just works. Proprioception is a guiding hand so deft and considerate that you might never come close to spotting it, and this is the tragedy of the body’s most elegant systems. You only learn how clever they are when they break—and when it becomes a matter of how clever they once were. I feel lucky, in a chilly, rather blasphemous way, to have been given this fleeting glimpse of the inner workings, just as I feel lucky that proprioception was my introduction to the world of neurological disarray. I suspect that proprioception is an ideal introduction: a gentle indicator that there is always a level of mediation between the world and our experience of it.
As Sacks explains, however, a proprioceptive deficit isn’t always so gentle. What has happened to me is nowhere near as all-consuming as what happened to Christine. She had horror; I have had pratfalls. A very slight deficit has turned my house into a riot of impediments. My shins are constantly bruised from chair legs and low tables, while a cat becomes a silent movie set-piece as it darts about, brushing in and out of flickering zones of awareness, sending me into an elbowy panic. I go to the kitchen before bed to get a glass of water, and my wife hears the enthusiastic Foley effects of a man klutzing through th
e darkness, even though all the lights are still on.
At its most insidious, though—and I wonder, honestly, if this is still neurological territory or something else—the comedy retreats a little. The mystery of proprioception seems tangled up with its mundanity. Over the last few years, my relationship with my own domestic landscape has become ever so slightly dreamlike: I’m left endlessly exploring places that I should already know—and making fresh discoveries. Light switches in my house fascinate me: I swear they take playful journeys up and down the walls, settling at unlikely heights.
I have read about this sort of thing too, but not in Oliver Sacks’s books. Philip K. Dick was troubled by light switches moving around, never settling quite where he remembered them being before. He saw this as proof that the world was being edited and updated around him. I don’t really blame him. How could I? It is a small step from neurological complaint to generalized ontological conspiracy.
Part of the reason I struggled to see the problems I was having with proprioception is that they seemed so personal, so private, so tightly woven into the texture of my life that I could not be sure they hadn’t always been there. It is hard to spot the things that happen when your brain starts to go wrong, because your brain is the last thing that is going to be able to tell you about it.
Yet Sacks could tell me about it. And here is the thing I will never get used to about neurology: when you finally look up some private and wordless sensation, you often find that it has already been cataloged and codified. You discover that it is not as private as you have suspected, or as wordless as you have feared.
3.
Help Me
I WAS TWENTY-FIVE WHEN I SAW what the brain can do.
Dawn in a house that my brother and his wife had recently bought—tall and thin with a spine of creaking staircases running through the center, surrounded by old rooms perfect for the clattering passage of young children, none of whom had yet been born. My dad had woken me from the sofa in the lounge. He brought me up to the big bedroom on the first floor. Inside, my brother was having a grand mal seizure.
I did not want to see Ben having a fit. I had felt, up to this point, that I could either be stoical or informed, and I had chosen stoicism. Dad, however, seemed to understand that I was faking adulthood, that I was a large child loose in the world and that nothing real had ever happened to me. There are ways I have learned to avoid becoming an adult. I can’t drive. I never organized a pension until the government did it for me.
I have avoided thinking about this moment for the last decade, and so the memory is bright and sharp and undisturbed. I almost feel like I could reach out with my hand and push through some invisible boundary, the air parting in thick, mineral clods, to find myself back in that room, a red shirt hanging over the mirror, water spilled from a glass and exploring the grooves and divots of the bare floorboards. Ben is laid out on the bed in the recovery position, and Dad stands over him. Ben is rocking back and forth rhythmically, to an insistent soundtrack that only he can hear. His hands are fists, his mouth is open, one foot is flopping against the other again and again and again. I am stalled in the doorway. I have never wanted to run away quite so much as I want to run away right now.
Dad talks to me. He says: “Come in. Sit down.” He speaks gently, but it is not quite a request. “Tell him you’re here,” he says. “Touch his arm. Show him you are here.”
Ben did not look how I expected him to. I had seen the long-term sick by this point, and I had noted in my callous way how the ailing body sometimes seems like something forgotten and perhaps badly stored, creased and dirty and worn away. My brother’s body did not look like that. He was tall and slim and unblemished, a parody of wellness as he twitched and shuddered on the bed. I put a hand on his leg. I had not touched my brother in years, it seemed. We feel things in my family, great, untranslatable emotions, as are felt, I imagine, in every family. But we do not touch each other often. I only did it now because I did not want Ben to die.
Family love is the most complex, the most selfish. I needed Ben to live so that I could continue being myself.
And this: for all the years of adulthood I have often fretted tediously, indulgently, unconvincingly, about who I am. I have never wondered what I am, because I saw it there with Ben, lit up brightly in that accident of synapses. I saw what we all are, and I saw, at least I thought I saw, how easily we can be wiped away, even if it’s only for a few minutes. The thing I now wonder about that day: where was Ben when we all gathered together in his bedroom? Was he still in there, looking out from some deep interior, unable to surface? Was he silently screaming as he shook back and forth? Or had he been taken somewhere else entirely? Had he been dropped down, muted, set to pause?
I think of Dad too. I wonder what he was thinking.
One of the most interesting things about having a child and watching them grow is seeing how things come online in stages. They can focus on you, then they can smile. They can hold their head up for themselves, then they can crawl. The brain of a newborn is not finished. For years it is growing, new pieces of it firing up as the months pass. Even now, this does not end. As I write this, my daughter is almost four years old, and yesterday she came in while I was reading, scarecrowed herself forcefully in front of the mirror and, looking down at her clothes, said: “Does this work?”
Idiom, I noted to myself, and turned the page. What I should have noted was: imitation. I have done that a thousand times, asking Sarah before leaving the house whether it is okay to wear a checked shirt with checked trousers, if the checks, right, are of different sizes? I now understand that someone has been watching me, studying me, figuring out which stray bits of me to use as she constructs herself.
I also understand that sometimes things go offline in stages too. You lose one thing, and then a week later you lose another. Sometimes, like Ben, you get these things back. Sometimes, also like Ben, you do not.
It was a Christmas around the sagging middle act of my teens when my brother came home for the holidays to tell us that he had a brain tumor.
Except that’s not quite right. That’s how I now remember it, but then one crucial detail will contradict another, and over time I will realize that I do not know this story—my own family’s story—as well as I think I do. Across the years, the version we all lived through has been compacted into the version we tell other people about—something that gets at the basic truth while ignoring the specifics. So let me think about this properly. Ben came home for the holidays, and he told us there was something wrong with him. And he told us not to worry about it.
It was 1994, I think, and I was busy failing a series of GCSEs. If I was sixteen, Ben would have been twenty-two. He seemed so old to me back then, but I now wince at the thought of having to do all that, face all that, when you’re just twenty-two.
Tall and stylishly delicate, Ben was a stark icon of my childhood. He was a mystery, to me and to everyone else, which meant that he was endlessly interesting. He was a topic as much as a sibling. “Your brother has this smile,” a friend of Ben’s confided in me once, possibly searching for more information, “that suggests he knows things nobody else could ever know. It’s an enigmatic smile. You could follow him around for twenty-four hours a day, every day of the week for ten years, and he’d still greet you with that smile.
“But I’ve worked him out,” Ben’s friend continued. “I know what his secret is.” I remember feeling my pulse flutter. My brother’s friend shook his head. “He’s just a man who knows how to do an enigmatic smile.”
“I don’t think that’s quite it,” I said after a pause.
“Neither do I,” admitted my brother’s friend.
I would never be like Ben, but at times I got tantalizingly close. We would say the same things at the same time, Ben and I. The world struck us both as being funny in the same way—or I learned to appreciate the mixture of mockery and sentimentality with which he approached life. I loved these moments of synchronicity, and I alwa
ys longed for the next one, knowing, at the same time, that they cannot be fabricated or forced. They happen or they don’t.
Ben had been away at college taking an access course for university when he started to have seizures, shaking him out of his seat in class and once launching him off his motorbike. These seizures were caused by a cyst, apparently. A pool of fluid inside the brain, pushing down against vital matter. An underground lake, dripping and unseen.
My family has spent twenty years trying to forget much of this period, but what we have actually achieved between us is an understanding that memory doesn’t really work like that. It doesn’t yield to pressure—and sometimes it stubbornly seems to dig in. I could go from any point in any conversation with any of my family to talk of Ben’s illness, and nobody would register a segue: it remains, in rest, at the forefront of our minds. All I need to do is think of Ben, now middle-aged and living in Worcester and working in a library, and the whole thing comes back to me in a rush, memories stacked and loosed, like cards shuffled and then sprayed across the room. The seizures, the cyst, the night he told us all about it.
It was at Mum’s house, which means we were chilly—another one of my mother’s self-imposed struggles. She claims that she doesn’t feel the cold, and if anyone turns a radiator on in her house, she mutters something about the war and rationing, even though she was born in 1949, and then she turns the radiator off again to improve us.
(And here’s something parents can teach children: Mum taught me that I wanted to be a writer. One day in primary school, learning to read, we were all given flashcards with words—words like CAT and CAR and MOTHER. We had to go home and construct a few sentences. We were allowed to ask for help—and, man, I had help. Mum showed me that these basic, blameless units of language could be made to line up in interesting ways. I returned to school with something I still find pretty funny: MOTHER RAN OVER THE DOG.)
The Inward Empire Page 6
