Copyright
Copyright © 2018 by Christian Donlan
Cover design by Adly Elewa
Cover photograph by Mina De La O / Getty Images
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First North American ebook edition, June 2018
Originally published in Great Britain as An Unmapped Mind, May 2018
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ISBN 978-0-316-50935-0
E3-20180510-JV-PC
Contents
Cover
Title Page
Copyright
Dedication
Epigraph
1. The Inward Empire
The Marrow of the Skull: The birth of neurology and a basic guide to the brain
2. Lost
The Man Who Couldn’t Open a Door: A guide to proprioception
3. Help Me
Phineas Gage, the Most Famous Neurological Patient in History
4. The Frankenstein Dance
The First Recorded Case of MS
5. The Dead Teach the Living
“I Only Observe, Nothing More”: Jean-Martin Charcot and the discovery of MS
6. The Ghost on the Green
Myelin, the Mysterious—and Misunderstood—Substance at the Heart of MS
7. Hyde
The Viking Gene, the Equator, and Vitamin D: The hunt for the possible causes of MS
8. Inside the Tent
The Art of Diagnosis
9. The Explorers’ Club
Acknowledgments
About the Author
Notes on Sources
Newsletters
To Sarah, Leon, Jonathan and Leonora, with love and boundless gratitude
There were never moments in your life when you actually saw something end, for whether you knew it or not something else was always flowering. Never a disappearance, always a transformation.
—Glen David Gold,
Carter Beats the Devil (2001)
When a patient calls on you, he is under no obligation to have a simple disease just to please you.
—Jean-Martin Charcot
(15 November 1887)
1.
The Inward Empire
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 four 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 four, 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 pass
ed, 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 wh
ich 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.
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