If I was lecturing, as Charcot did every Friday and every Tuesday to audiences that often included many outside the medical profession, I would have to speak from muddy personal experience rather than academic curiosity, and I would argue that neurological diseases are ultimately an attack on individuality, in the same way that streptococcus, say, is an attack on the throat. Neurological diseases like MS live within the central nervous system after all, that complex tangle of 100 billion cells—every one a lightning bolt captured mid-strike—that makes each of us, through thinking, the person we think we are. When these diseases attack the brain, they cannot help but attack the person being endlessly remade within it.
It is perversely fitting that MS should attack the individual in such a fiercely individual manner. Every case of MS is different, and the sheer scope of the trouble it can cause is impossible to adequately capture. MS has a destination, and one I am all too aware of, but it has no set timetable, and it has posted no itinerary.
And at its worst, multiple sclerosis is nothing. A literal nothingness: the stillness of spasticity, the quiet of an addled mind. Day to day, I sometimes feel I am chasing a little pool of nothingness around inside me, the way I might tilt an air bubble up and down through a spirit level. Sometimes this nothingness seems to gather in the fingers, a lack of sensation that feels implausibly, paradoxically, raw. Sometimes it pools in the brain, a wordlessness, a theft of language that, on reflection, makes me wonder if I need nouns and verbs and adjectives in order to have any thoughts at all.
Since the beginning, I have always wanted to see this nothingness. I have not needed to understand it, perhaps, but I have needed it to take some kind of a shape before me. Early on it became clear what shape it would take too. Landscape has a way of creeping into language and filling it out. I talk of a chilly coastal fog that descends and swallows words and entire thoughts. I talk of the sudden erosion of context, as if a stretch of cliffside has been yanked away by a fierce tide. I talk of a place that I am transported to when the truly weird stuff starts to happen: my own Inward Empire. And it’s not just the weird stuff anymore. This landscape has become a way of thinking about what’s going on with me day to day. It’s a way of sounding out the boundaries of the world I now live in.
Perhaps the real change is in how I have come to see myself. I am a fretful man who has always dreamed of adventure. For thirty years I have doodled fantastical maps while talking on the phone or looking out of the window in class or at work; I have read books about experience while inching away from it whenever it seems to approach me in the real world. Now, experience is here and unavoidable: disease has forced me to become an explorer and a cartographer. Multiple sclerosis has ushered me into a new environment entirely, where the strange science of the brain intrudes into everyday life in unexpected ways and at unexpected times.
I’m not sure this perspective on disease is always the indulgence it appears to be. In the streets and intersections that Leon and I make of Lego bricks, places that grow, contract, and are endlessly being replaced, I get a fresh sense of the possibilities of space, of the ability of landscape to cope with change without any attendant need for understanding. You simply cannot get attached to what you have made when creating with a child. You have to learn to deal with the sort of unpredictability that can pull up entire neighborhoods with no warning, and that can then draw cathedrals out of the least-promising rubble.
And it’s worth remembering that hidden within the diagnosis of multiple sclerosis is a second diagnosis: incurable. This is the one it can be truly mind-shredding to confront. Over the last three years I have come to comprehend what MS means on a day-to-day basis—the aches, the fatigue, the tingling moments when the whole world shifts briefly out of alignment—but it is much harder to understand that these things are going to continue, and only increase in regularity and force. Legs quake. Ribs creak. Sentences are cut short and plans are postponed as MS stages another guerrilla raid on context.
And so, in the months since my own diagnosis, my response has been to try and look outwards as well as inwards. My doctors have been working hard on me, establishing a treatment plan and plotting the likely course that this willful, unpredictable disease is likely to take this time around. I have been busy too. I have had to find a new place for myself, and what follows is the story of my search.
This has been the objective, really, to get a sense of where illness has left me, to understand what this kind of illness—one that lurks inside the territory of identity—actually means for me. And perhaps what its various iniquities reveal about the mind I’ve been living in for the last thirty-eight years anyway—an idea of where the illness stops and I, often equally problematic, begin. I have seen so much, from the early sketches left by the first anatomists who sought to expose the godly architecture of the brain to the lunar world of today’s MRI scans, silver and shimmering on computer screens. And I realize that over the last few years I’ve been slowly mapping my own body too. Alongside a growing familiarity with the buried treasures of the brain, I now know there are two nervous systems rather than one, for example, and I have a working understanding of the separate layers of the body’s aggressive, and imperfect, immune defenses. My search for understanding has brought internal spaces out into the light. It has stopped me from being quite such a tourist in my own skin.
This, then, is a book about my attempts to navigate the world as it appears to a neurological patient—a neurological patient who has just become a father. It’s a book about trying to meet an unpredictable and inventive disease on its own terms. And it’s a book about the brain, and about the things I have learned about the people who have struggled, over the centuries, to bring this strange, ugly, fascinating organ into the light and understand the way that disease affects it.
Because of all this, it’s also a book about something that my daughter’s Legos seemed to be stirring within me as we first got to know each other, an inkling, probably foolhardy, possibly obnoxious, that my diagnosis didn’t have to be a total disaster, that its destructive nature might have some errant creative potential hiding within it. After all, there is only one rule when Leon and I build with Legos: I must work with whatever she gives me. Even when she makes strange choices—such as deciding, halfway into a skyscraper, to stop adding new floors and turn the whole thing into a high-rise dog park—I must work with that and steer into it, rather than pretend it didn’t happen or start again. Her gift is that she makes decisions I wouldn’t think of, and so together we end up creating things that feel unprecedented to both of us.
I’m still doing all of that, I think, and it seems only right that Leon was there with me back at the start of all this. My daughter is my reason for exploring in the first place: I need to find a way to function as a parent with an encroaching disability.
People sometimes talk about how selfish having children is. They are talking, most often, about the planet, and they are reducing children to the barrels of oil they will consume, the plane seats they will fill, the beef or the quinoa that will have to be produced to feed them. I never argue with these people. Partly because I am timid, partly because I suspect they have a point, and partly because I have slowly come to recognize that having children is selfish in other ways too.
When I was young, twelve or thirteen, I had a very strong sense of what death would be like. Death would be like the evening of the last day of the summer holidays. Mawkishly you store your toys and you slump into bed. And then you lay in the warm, windless dark, staring at the ceiling or at the moon arcing slowly past an open window. And you think: I wasted all that. You think of the long summer days in which you got up late, in which you dawdled over breakfast, in which you could not make plans or decide, even, which direction to start out in for an aimless wander. You look back on this glittering opportunity and all you have is regrets at the things that didn’t get done.
It never occurred to me that one day I might look back and feel that for every opportunity squandered
there was one I decided to make the best of—or one, better yet, that I had no choice but to make the best of.
As I write this on a Thursday morning in the first half of 2017, I have just dropped Leon off at nursery. We rode the bus out there together—I’m sure we both chugged our way through some of the oil that should rightly belong to other people as we went—and she told me about Wonder Woman and Batman and a time, a few weeks ago, when she fell on the path outside our house and hurt her knee and felt, suddenly, that everything in the world was just terrible. Halfway through our journey, she zipped up her hoodie and then announced that she had forgotten what T-shirt she had decided to wear today and I had to try and describe it in great, forensic detail, the T-shirt under her hoodie, until she remembered that it was the one with the moose on it and that once she had put it on that morning she had had to take off her gold shoes and find a different pair because the gold shoes were just too much when combined with a moose.
We got off the bus and I explained, for the thousandth time, why she could not squirm out of holding my hand when traffic was nearby. We waited for the green man, we stopped in at the local Tesco to look at the new magazines, and she took the longest route to the magazine rack because, as she always does, she wanted to “zigzag there and back.” We went to the nursery and found we were the first ones there today. She raced to a pole by the front door that holds up a small shingled roof, and she spun on the pole and then started to climb it.
She was too cool to let me kiss her good-bye when the doors to her nursery opened, so I waved her off from outside and got the bus home. As I creaked up the driveway a twinge in my upper leg announced that I was going to have to sit down for ten minutes fairly soon or I would pay for it later. I opened the front door on to the usual domestic crime scene: honey-flavored hoops exploded underfoot, My Little Pony underpants flung over the arm of a chair, and toothpaste smeared across a cushion. Beneath the sofa, kicked there by a tiny foot, were the gold shoes that my daughter had decided were too much to wear that morning. I sat down and stared at them resting in the gloom there, and felt a wonderful, rich kind of sadness that the house was so empty.
And I realized once again: my world used to be vast, but now it is small and strange and bright, and I exist within it in a way I never did before. This is despite my current compromises. Maybe it is even because of them. My daughter sends me out into the world just as my illness is starting to shut that world down. Together we explore a landscape so compact that I can imagine a map of it fitting into the endpapers of a novel, but simultaneously so vivid and interesting that it belongs there.
The Marrow of the Skull: The birth of neurology and a basic guide to the brain
The study of the central nervous system began with a prod. Thousands of years ago, a man pushed his finger through a jagged hole that had been knocked in another man’s skull in an accident, and pressed the soft matter inside to see if his patient would cry out and weep. Hopefully he would cry out: if the patient shuddered from the pain but did not vocalize his anguish, it meant that nothing could be done for him. Loss of speech indicated that a head injury was untreatable.
This was Egypt around 2600 B.C., in the Third Dynasty of the First Kingdom. And this was medicine as it existed at the strange, violent birth of neurology—not that it would be called that for many centuries. Doctors were priests in the Third Kingdom. Treatment sometimes involved crocodile excrement or prayer, or the milk of a woman who had birthed a son. And the brain was not the brain. Not quite. Not yet. Egyptians sometimes called it the marrow of the skull.
The phrase makes sense, I think. Without an understanding of the brain’s centrality to mental life the skull becomes a bone like any other, and the thing inside it, though unusually grotesque and complex, might ultimately be no different from the paste and jelly found in any other bone. The marrow of the skull: here is the brain as an object. An object that we have struggled, over the millennia, to understand.
The Third Kingdom was a period of rapid cultural transformation for Egypt. Large-scale construction was sweeping across the empire, and turning Egypt into a veritable wonderland for head injuries as it went. Many of these industrial accidents were noted down in the earliest neurological writings yet discovered—a document known as the Edwin Smith Surgical Papyrus, which was not written by Edwin Smith (he was the archaeologist who purchased it in the 1860s) and which contains no notes on actual surgery.
This papyrus, which is sometimes said to carry the wisdom of Imhotep, the great priest and polymath, even though it was probably written a thousand years after his death, lists forty-eight medical cases and the best means of dealing with them. Twenty-seven of these cases are head injuries, and they offer a sometimes-confusing glimpse into the state of Egypt’s thinking with regards to the brain.
Ancient Egyptians did not appear to value the marrow of the skull very much. The soul, they believed, resided in the heart. After death the brain was removed and tossed aside without ceremony during the burial process or, in the early days of embalming, simply left where it was.
Even so, the Egyptians clearly understood something of this strange, ugly organ. They noted that injuries to the head could cause dysfunction in distant limbs. They also recorded evidence that damage to one hemisphere of the brain would generally affect behavior on the opposite side of the body.
Over the centuries, the brain’s stature gradually improved. Today, we can marvel at the complexity and elegance of this compact bioelectrical masterpiece, even if many of our questions, such as how exactly do the brain’s billions of electrical signals come together to create thought and consciousness, remain unanswered. We understand that the brain is where our sense of self resides. We have a growing appreciation of the brain’s different structures. We have mapped a lot of the terrain.
My favorite map, although it is not unblemished by disagreement, is that of the triune brain, which was laid out in the 1960s by the neuroscientist Paul MacLean. MacLean argued that the arrangement of the various structures in the human brain tells the story of the evolution of the vertebrate brain in general—that it contains, in effect, three evolutionary strata. Most modern neurologists disagree with many of the details of his argument. Regardless, his three-part model of the brain remains a sprightly and easy-to-grasp outline of the brain’s basic shape and function.
Working bottom to top, we move from the primitive territory of the brainstem, which controls the sorts of actions we have long since learned not to think about—breathing, the beating of the heart, bodily coordination—through to the limbic system, which is the territory of emotions and urges. The limbic system houses structures like the hippocampus, which plays a central role in the consolidation of memory; the amygdala, which is involved in the expression and production of fear and rage; and the thalamus, among other things the relay station that dispatches sensory and motor information out across the brain. The final part of the brain, resting above all this, is the neocortex—the rumpled cauliflower of conscious mind, each hemisphere split into four lobes that deal, between them, with everything from visual perception and the comprehension of sound to conceptualizing, planning, and logic. Breathing and laughter, then fear and memory, and finally the human part—mostly, it can sometimes seem, engaged in maintaining the illusion that we are not entirely controlled by fear and memory.
It can seem at times that this brain of ours is basically a chemist, eager to whip up whatever magical cocktail will keep you alive through the next five minutes of unpredictable human experience. Your emotions are frequently just chemicals—they’re hormones, they’re neurotransmitters—and the brain dispenses them to your body when it decides you need to feel their effects. Over time, through exposure to this kind of thinking, I have come to see the brain as a chirpy nineteenth-century mixologist, with a starched collar and a center parting, knocking together fancy drinks and skimming them down the bar toward me.
In my more melodramatic moments, I sometimes worry about this mixologist, and what he
might be doing on the sly. The brain is very busy, and it does not show its workings. It is looking out for you, but it is also operating without your conscious consent. It doses you with oxytocin (playfully known as the hug hormone) to stop you from skipping out on your family; it drops your consciousness entirely in times of danger so you can become a creature of pure action and instinct. The brain and conscious mind coexist, but the relationship is not always fair. A brain hides things from you in order for you to function. (I almost typed “in order for you both to function.”)
Putting the triune model to one side, the brain also makes a kind of sense if you divide it down the middle, into the left and right hemispheres. These two halves—endlessly invoked by expensive motivational speakers around the world seeking to explain the mystery of creativity—share a similar architecture, but evolution has equipped each to handle its own specialized functions.
And you could divide the brain in yet another way, carving it up between the gray matter and the white. The gray matter, composed of dendrites (the inputs of a neuron; the outputs are called axons) and cell bodies, is the part that has historically tended to get all the glory. Here, in the crackle of firing synapses, you get thought and action. The white matter, meanwhile, is often written off as mere insulation: a coating on the axons akin to the plastic flex you get on ordinary electrical cables. As we will see later, this perspective may be changing.
It is always interesting to know a bit of neuroanatomy, even at such a simplistic level as this. But it serves a deeper purpose for me. Imagine that the clumsiest cliché is correct and the brain really is just a computer. Then imagine that you open the computer’s case one day and discover that there are termites inside who have been eating the plastic coating on all the wiring. What do you do?
The Inward Empire Page 2
