I have never really liked the fact that I have a brain. The thought of it has always made me feel vulnerable and compromised and delicate, as if I am walking around with a glass of water balanced on my head, waiting for it to spill. And I now suspect that I am not entirely alone in this. When, recently, my daughter Leon first became aware of her own brain — when she first noticed the presence of her thoughts sounding inside her head — she assumed she was unwell.
One evening a few weeks back, I was drawn through the house by sudden sobbing. After I’d found Leon crying in the living room, and after I’d wiped her nose and pinned back her hair, she told me, with much floundering and fumbling to get the meaning out, that she had pictures stuck in her head and she didn’t know why.
The pictures made her happy, she said. They were mainly pictures of Lego bricks, cluttered and colorful, spread across the floor of the living room. But she didn’t understand where these pictures had come from, and they didn’t seem to be going anywhere in a hurry. Now she was scared that she would always have pictures of Lego bricks stuck in her head. I think she even worried there might be a real brick or two lodged in there.
Leon was nearly 4 by the time of this revelation, and as soon as she understood that the pictures were called thoughts, and that thoughts are a very normal kind of magic, we decided to conquer this new information in the most direct manner we could both imagine. I sketched the basic perimeter on a piece of paper, and then my daughter took twenty minutes to draw a map of the kind of landscape that this book explores. It’s a map of the interior of the skull, a map of the beautiful, maddening, difficult place that thoughts come from. Except, because she was nearly 4, the picture Leon drew is filled with features that do not appear in most neurological textbooks. There is a lot of lava inside her skull, apparently, and at least one waterfall. There are a surprising number of ponies knocking about too.
I was not surprised that this map helped to calm her down. When I was young, maps and stories were inseparable. Every book I read seemed to come with an outline of the territory that it covered laid out across the endpapers, and every atlas I owned was dense with little figures and scenes waiting to explain the history of an island or to give shape and weight to the science throbbing away beneath the pale surface of an ocean. The adventures I liked did not always require opposition — I was a nervous child and easily frightened — but they did require a journey, a sense of movement through a landscape cluttered with strange, promising names and the suggestion of sights that might be worth a visit.
A map is an adventure, but if you are nervous and easily frightened it is also a comfort. I could look at the map before reading a book and get a sense of the kinds of elements it would contain — the rough shape of the story, and perhaps a limit to its potential to scare me. Maps were a means of fixing things in place and making them safe.
An obvious question emerges from this, and I have been turning it over for the last few years. What does it mean to explore a terrain that resists most attempts to document it? What does it mean to find yourself without a map?
I know a few places like this, I think, and one of them is intimately bound up with Leon and those Lego bricks. Since the early days of our relationship, whenever the weekend came around, with Sarah still sleeping, Leon and I would get up together and head to the living room, where we would upend the Lego box. We would listen to that great collapsing splash that Legos create when they move en masse and then, Leon balanced in my lap, I would build. We would build. One piece connecting to another. Toys she was far too young for and I was far too old for. Toys that were suddenly perfect for both of us.
In my memory, this ritual started just months after Leon was born, as soon as she entered that glorious age when every experience is worth having. Your job, as a child, is to have no job. Your job as a child is to be roving eyes and roving hands. The world is a thing to be examined closely, and then it is a thing to be grasped. Our time with the living-room Lego set feels idyllic when I look back on it now. Maybe it is suspiciously idyllic. Sometimes I will tell this story to someone else and they will raise an eyebrow, unconvinced, and it will dawn on me that what I am telling them is not quite the whole story — that there is a more interesting aspect to our Lego mornings, and I have slowly, steadily, forgotten it.
I have forgotten that, for many months, it was me doing all the building. I think Leon just snoozed at first, strapped into a bouncy chair. As time passed, she would be a warm weight in my lap while my arms reached around her for bricks, her fragile head resting under my chin. Sometimes, she would tap her fingers on her palms with that look of amused indulgence that children often adopt when confronted with the behavior of adults. And the behavior she was witnessing is pretty simple for me to decode, frankly. I was Leon’s father, but I did not know how to be myself around her. I did not know how to play with her yet, or even if she could play at this age. Things did not always come naturally to Leon and me in the early months. Legos became a thing to do that allowed us to spend time together so we could start to understand each other better.
To put it another way, I met my daughter in a delivery suite at Sussex County Hospital in Brighton, but I got to know her on the floor of the living room in our house, bricks scattered about and a strange landscape shifting around us.
Over the next few years, Leon steadily became more involved. She slowly moved from watching to wanting to take part — and finally to leading.
And I started to notice things too. I noticed the flickerings of her tentative nature as she reached for her first bricks and then tried to eat them. I noticed her easy smile and also her unpredictability, discovering that something that would make her laugh one day — clipping bricks around the ribbon of a helium balloon, say, to stop it from floating to the ceiling — would make her sob with fury the next.
Destruction was an early fascination. I would start constructing a building and she would take it to pieces, punching and giggling. It was a race to see who could work more quickly. Eventually, she wanted to put one brick on another herself. Gaining control of her hands and fingers eventually allowed her to twist one piece into the correct position and snap it cleanly into place.
The first time she put two bricks together like this she laughed for a full minute at what she had done. And then she gave herself a week off. The Legos have been like that throughout: a series of revelations for both of us. Simple blocks, and yet we use them to make endless tumbledown cities and bizarre, craggy mountain ranges that fragment into archipelagos of rubble. We have a real thing for rubble these days, almost a philosophy of rubble. We understand that you should never completely atomize the last thing you built. Instead, you should leave tantalizing hints of it in the storage box for the next time. Spars of old staircases; doors and windows bodged together in promisingly unpromising ways. Every disaster contains a glimpse of the thing that will follow it.
It helps that even now neither of us is ever trying to build anything specific in the first place. Our cities belong to some doodling realm that exists in the margins, beyond the concerns of form and function. My daughter and I have an established interest in fantasy buildings, in unreal estate, and in the lives of strange, quiet people who are only an inch or so high. And I have come to see that all the places we build are, in some way, the same unmappable place, regardless of what shape they might take from one minute to the next. Privately, I call this place The Inward Empire, an incongruously lofty name for a scattering of Lego bricks, perhaps, but a perfect fit for the kind of quiet collaborative discovery that building toys allow for.
And there are two tales to this city. The first is Leon’s, of course. The lurching advances in building complexity match the explosion in her cognitive abilities as one idea connects with another, as plans form, as capabilities are discovered, as the images in her head have edged toward conscious thought. The first time we played, she gawped at the colors and shapes. Now, she stands bent over a box of bricks, searching through them for the single piece she is after. If it eludes her, she gets furious. When she finds it, she can ponder its optimal placement for the best part of a minute.
Then there’s my story. For the first few months of our Saturday ritual, I now realize that I was witnessing something happening inside me. My fingers were growing numb, my limbs were getting heavier, I was becoming clumsier than usual. I picked up a slight quaver in my voice and injured myself in many small, stupid ways throughout the course of an ordinary day.
And then, at night I would sometimes lie back in bed and discover that my mind was suspiciously quiet. There was not a single thought strolling around inside my head. It was an ominous kind of calm.
Over time, these early symptoms would reveal themselves for what they were. They were the first signs of multiple sclerosis, a maddeningly unpredictable neurological disease that I would spend the next few years trying, and often failing, to get an understanding of.
But let the night retreat for a few moments longer. I am grateful to Leon for all the time I get to build Lego structures with her. For the obvious reasons, and for this secret reason too: without Leon, I know that I would always build the same kind of structure — a low, rambling sort of building, something a talentless Frank Lloyd Wright acolyte might bang out for an inattentive client.
Together, though, Leon and I build all sorts of things. She cannot settle, and she rarely plans. She is always changing her mind, expanding her focus. The buildings she creates are daringly lopsided, or exist as bursts of freakish minimalism. A brick here, another balanced over there and then: done. The purpose of these structures can shift very suddenly in the construction. A park becomes a prison when she adds a barred gate and then bricks in the see-saw. A skyscraper of mine can be utterly transformed by placing a single brick on top of it — she whacks on a ship’s wheel and it’s a galleon, set teetering through the seas.
This is the way she is with everything, going through that frantic period children have between two and four when everything is new, everything is possible, when everything is unprecedented and there is suddenly a real urgency to get it happening now, and all at once. I worry this will not last. I have seen the way older children play with Legos, when their parents visit us and the Lego box is hauled out to entertain them. They make very pretty things, older kids, but it is a stale kind of prettiness. It is in debt to symmetry, in debt to the architecture of pedantry. It’s a reminder of that thing Tom Wolfe said, that the middle years of childhood are the most formal years of your entire life.
And then one day you’re my age and, when faced with Legos, you behave as I do. No rocket ships or alien worlds anymore. Just pastiche, just real estate.
This is one of a million reasons why I need Leon. It is pure selfishness. She dreams of this stuff. And when she’s awake, I now understand that she often thinks of it too.
And that worry of hers: I see pictures in my head, she explained to me through her tears, through her inability to land on the precise words. How did she know that? How did she know that the thoughts she was having were in her head?
What is multiple sclerosis? There are at least two answers to this question. The first is an attempt to explain the mechanism of the disease itself, a disease in which the body’s own immune system decides to attack the fatty, insulating coating of the nerves in the brain and spinal cord. This coating, made of a substance called myelin, protects our nerves and speeds up those vital electrical pulses moving from one neuron to the next, kissing across synaptic gaps in a brisk burst of chemicals. Without myelin, crucial signals between the brain and the body become garbled or simply go missing entirely. The kisses go unmet, and over time you start to feel the consequences, in fingers, in toes, in glitch and twinge.
I envision the lightning-fast movement of these signals through my daughter as she learns to put nouns and verbs together for the first time, while I sometimes stumble over the simplest sentences. At times it seems that we are joined, the two of us, through the magical substance of myelin, as it advances through my daughter’s brain and as it is attacked in my own.
Multiple sclerosis comes in a handful of different forms, depending on its severity. This book is concerned with relapsing-remitting MS. This is the most common form of the disease, in which new or worsening symptoms flare up in sudden attacks, or relapses, that can last anywhere from days to a few months before retreating. Over time, many people with relapsing-remitting MS go on to develop secondary-progressive MS, in which symptoms grow worse, with fewer periods of remission. In primary-progressive MS, the rarest and most aggressive form of the disease, symptoms grow steadily worse from the start, with no periods of remission. All forms of MS are powered by the same basic mechanism, however: it causes havoc wherever your nerves travel, and your nerves must travel everywhere.
This ties into the second answer: multiple sclerosis is a disease in which a diverse number of unpleasant things may or may not happen to you. It can affect almost every part of the body, causing anything from gently tingling fingers to full-blown paralysis, and in between you can get everything from incontinence to difficulty in swallowing, from fatigue to — in my case at least — bursts of euphoria. Multiple sclerosis can be life-shortening, but it is always life-altering.
Because of this, when someone first tells you that you have multiple sclerosis, it seems to me that they are not necessarily telling you very much. Over one hundred years after it was
first described, much about MS remains mysterious. There are lots of blank spaces left on the map. Somewhere within these neurogenic wildlands lies the mechanism through which this disease springs its nasty tricks. Somewhere, most importantly for me, lurk the tricks themselves: all the bizarre and alarming and fascinating things that MS may do to you, which no one can predict.
My favorite description of MS is one of the very first: marked enfeeblement. That was the phrase the great French neurologist Jean-Martin Charcot used when lecturing the medical community in the late nineteenth century. Imperious and shy, a noble enigma, Charcot cared deeply for his patients, and yet he seems to have been able to view their suffering from a distinctly aristocratic distance. When he spoke of marked enfeeblement, he was referring to the various cognitive damages inflicted by a disease that he had been the first to accurately describe. Specifically, he was referring to MS’s effects on memory, but he had time to address other problems too, such as the fact that new “conceptions” are formed slowly in MS patients, and that “the intellectual and emotional faculties are blunted in their totality.” I can attest to all this, and I should add a reminder that, even then, this is just the cognitive side of things.
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 38 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, 12 or 13, 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 goodbye 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.
From The Inward Empire: Mapping the Wilds of Mortality and Fatherhood, by Christian Donlan. © 2018 by Christian Donlan.
Reprinted by permission of Little, Brown and Company, New York, NY. All rights reserved.