I was still trying to do all this, but in the presence of MS it was no longer entirely possible. There is that saying among neurologists: neurons that fire together wire together. It means that the synapses—those gaps between dendrites and axons, the inputs and outputs of neurons—that fire when messages make their way through the brain become stronger the more they are used, and therefore a constellation of synapses that has fired before is more likely to fire in the future. You get stuck in the same kind of behavior by virtue of carrying out that kind of behavior in the first place.
And suddenly, MS had come along and launched a handful of buckshot through all of that long-established wiring. That was my explanation, anyway. It certainly explained to me why kinks had started turning up in the ancient rituals of my life. Why I would look down at my hand on the bus and realize I was still holding a coffee cup from the house. Why I would leave home so many times over this period with my trousers undone. The patterns were breaking down and, trouser thing aside, maybe that wasn’t such a disaster.
But I was scaring Sarah. She would return home from the store to find that I had surrounded Leon with teetering Lego palaces in her absence. Leon would be sitting in the middle of them all, bewildered by this sudden burst of construction. I would be equally bewildered to be told that this did not amount to playing with Leon. I also started to look odd, like I had been dressed by a malfunctioning robo-butler from the future, collars jagged, buttons done up wrong. When I looked after Leon, she started to look odd too. I often put her trousers on backward.
I was learning the tidal break and pull of a relapsing and remitting disease—and all of the psychological clutter that comes with it so soon after diagnosis. And maybe, at first, this behavior was the way the system bedded itself in. It marked the transition between being down, twitchy, achy, exhausted, sometimes mildly confused, and being up again, everything so sharp and bright that I felt like I could see every line in a stranger’s face as I passed them in the street. Sometimes, just sometimes, I felt a tug at these moments, as if I wanted to stop the stranger and tell them all about it.
And this clarity, when it became decisiveness, was sometimes pretty handy. One night, in the bathroom, I felt water on my face and assumed that my trigeminal neuralgia had returned. In fact, there was another explanation: there was water on my face. A March shower had started outside, and now it was raining inside too, dripping through a fresh hole in the bathroom ceiling over by the pull cord for the light that I often struggled to find these days.
Raining indoors. Back before MS, this would have absolutely shattered me. I would have pictured the attic filling with a polluted midnight sea, the hatch above the living room buckling and then drowning Sarah, Leon, and me, our bodies twisting in the thick, cloudy flood. I would have been dead and buried before I had even started to investigate. But now I just accepted that there was a hole in the roof somewhere and I needed to get it fixed, and there were probably people I could call who would do this. At most, we’d have to cut down on the weekly takeaway.
To me, this kind of basic objectivity felt like the blossoming of a new superpower, and it stayed with me long enough to survive several tradesmen telling me that the entire roof had to come off and be replaced, the 1930s tiles having been worn down by decades of coastal winds until they had the consistency of wet biscuit.
It even stayed with me through the three days it took to replace the roof, in which it became clear that the forces controlling the universe hated our bungalow with an unusual passion. Making tea for the man who was doing the work for us, I managed to blow the electrics, which meant I had to look at the fuse box for the first time since we had moved in.
First I had to find it. The fuse box turned out to be a strange and ancient thing hidden at the back of a cupboard in the kitchen. I remembered having read about it in the survey we had commissioned, but I didn’t remember the survey saying that it looked like the kind of technology you might have found on a U-boat in the Second World War. It was patched together with great ingenuity, and it was made of some sort of material that wasn’t quite wood and wasn’t quite plastic.
“Is that Bakelite?” I asked the man who was fixing our roof and who had joined me for moral support.
“No idea,” said the man, leaning in for a closer look. “But that fuse is actually foil from an old candy wrapper, and the one next to it is a rusty nail.”
At that, he started to inch away from the cupboard, and I called for an emergency electrician.
“I dealt with it,” I said to Sarah that night, as the last tiles were in place. “I made it through the whole thing.” I breathed out theatrically. “I’m feeling pretty good about things.” I paced around, shaking my limbs because of the tingling I felt, because of the energy I suddenly seemed to have inside me.
Sarah looked up from the nautical book she had been reading. The binoculars and vessel-tracking apps had given way to almanacs of the sea. (The night before she had awoken in the middle of the night, talking of narwhals.)
“I’m just reading about this thing old sailors used to get,” Sarah told me over the edge of her book. “When they were on ships for long periods of time with no sign of land. They got this thing called calenture.” She picked up her computer and read aloud from an open tab: “‘A delirium occurring from heat stroke or fever, in which a stricken sailor pictures the sea as grassy meadows and wishes to dive overboard on to them.’”
She looked at me evenly. “I bet those sailors were feeling pretty good about things too.”
That night, in bed and feeling calmer, I told Sarah about my growing worries regarding Leon, worries that had been with me since I came back from seeing Brian. Worries that had been bubbling away, wordlessly, never quite announcing themselves openly because there was always something else—double vision, euphoria, a leaking roof—to get in the way. “I’ve realized that I worry for her about this one thing,” I said. “I’m worried that her life won’t be perfect.”
I had reason to worry. She had come home from nursery that day and announced, as clearly as she could, that the T-shirt I had dressed her in that morning, a classic X-ray on black showing a ribcage, was a boy’s T-shirt. We asked: “Who told you that?” And we told her that whoever did tell her was not correct. Too late, though. Sometimes, you are too late.
“Was her life ever going to be perfect?” asked Sarah, clearly frustrated with my inability to join the real world. “Is anybody’s?”
Somehow, I survived even this revelation, which normally would have flattened me more than the roof. Maybe it was euphoria. Maybe Sarah was right and I was close to climbing over the side of the boat.
I made use of my new energy. I went back to trying to understand neurology, haphazard as my approach could be. I discovered, to my dark delight, that fascinating, personality-warping illnesses lay in every direction.
Every morning, before a day of playing games and writing about them, of walking around with my legs aching and my trousers undone, I would sit up in bed while Sarah and Leon slept, and read about the brain going wrong. When Sarah woke, I would draw her close to tell her about the worst I had discovered. “Can you believe,” I would start each morning. Can you believe what? Everything.
“Can you believe that there is a neurological problem in which people cannot see things when they are moving?”
“It’s called akinetopsia,” said Sarah, checking that Leon was sleeping happily. “It was in an episode of House.”
Well. Can you believe that there’s an illness where people are blind but are convinced that they can see? That there’s an illness where people cannot stop rhyming the ends of sentences they hear? That there’s an illness where people cannot forget anything?
“They can’t forget anything?” asked Sarah.
“It’s called hyperthymesia,” I said.
“Sounds handy,” said Sarah, who had spent all of the previous day looking for her phone.
“It’s not that handy,” I said. “Imagine your world
filling up with references, with ancient slights, clogged with ghosts everywhere you went.”
Sarah sat up and moved her hair around a bit. And then she stopped and looked at me and her eyes narrowed.
“What’s going on?” she asked.
“I’m just reading,” I said. “You told me to learn about neurology.”
“I didn’t tell you to do anything,” she said. “I said it might be good to learn about MS. Because you have it. This is something else. This is…”
“Butterfly collecting?” I asked. I had read that some neurologists call it butterfly collecting—all of the weird, fringe illnesses that make for a good diagnosis on House. The kind my sister and I, when we were young, would collect. We would pester my dad to tell us about the weirdest things he had encountered at work. Just the gruesome ones, Dad, we’d ask, filling out car journeys, trips to the supermarket, holidays. Just the ones where someone dies in an unspeakable way or has an aneurysm.
“Children are heartless,” I said, apropos of a memory I then realized had only been unfolding in my head. Sarah nodded, though. She understood the missing links in what we had been discussing.
“Is it possible,” she said, kicking back the duvet and preparing to rise, “that you are so hung up on these different diagnoses because you’re trying to change your own diagnosis?”
“Like I could change MS,” I said.
“Not the diagnosis you got from your neurologist,” Sarah said. She put a warm hand on my shoulder as she moved past me in the bed. “The diagnosis you got from your dad afterward. MS personality.”
Myelin, the Mysterious—and Misunderstood—Substance at the Heart of MS
It took a long time for me to see past Charcot. He dominated my tentative investigations into MS. His name was there on every Wikipedia page I turned to, and his portrait—stern nobility with the hint of something surprisingly gentle behind the eyes—stared out at me from the pages of the neurology books I flicked through in Brighton’s Jubilee Library. Here was the man who had solved MS. For months I did not think much about what had come next.
But the study of MS did not end with Charcot, just as the more I looked, the more I realized it did not begin with him. In the 1960s, the role that the immune system plays in MS was established, and over the last thirty years the first disease-modifying drugs have started to emerge for the relapsing-remitting form.
And then there is myelin, the white matter of the brain, which lies at the center of MS. Over the last few decades, there has been a quiet revolution regarding our understanding of this strange substance.
Myelin was discovered by Rudolf Virchow, one of those improbably multifaceted figures the 1800s were so good at nurturing. Virchow was an anthropologist and a medical doctor, as well as a biologist, prehistorian, writer, editor, politician, and the man who, when challenged to a duel with Bismarck, proposed they fight by eating sausages, one of which had been poisoned. In the eighteenth century, Luigi Galvani, who proved that neurons sent their messages via electricity rather than spirits, liquid, or vibrations, which were all competing theories of the day, was the first to propose there must be a coating of some kind on these cells to insulate the electricity. In 1854, Virchow found it, a fatty material coiled around the axon. And yet, brilliant as Virchow was, he thought this fatty material was inside the neuron rather than outside it. And so myelin was given a name derived from muelos, the Greek word for “marrow.”
The role myelin plays in MS has been understood since the early twentieth century, but the substance itself has continued to be misinterpreted and perhaps underestimated. It is traditionally the gray matter, composed of the dendrites and cell bodies of neurons, that gets the credit for the exciting things the brain can do. In the crackle of synapses, in the sudden puffs of neurotransmitters like serotonin, this bioelectrical circuitry somehow creates both thought and action. Myelin merely binds the axons.
Even here though, it is easy to misjudge the elegance of this substance. The most common modern analogy for myelin is that it fulfills the role of the plastic coating on an electrical wire. But myelin doesn’t just protect the axon it’s wrapped around, it actually increases the speed at which electrical messages move through the axon. Enormously.
The more you discover, the stranger the picture becomes. You might assume that all axons in the central nervous system are myelinated. In truth, most aren’t. In an area like the optic nerve, which requires the swiftest of transmissions as it relays messages from the retina in the eye to the visual cortex at the back of the brain, almost all axons have a coating of myelin, but elsewhere it can be something of a rarity. Even in one of the supposed strongholds of white matter, the corpus callosum, a thick bundle of axons that connects the two hemispheres of the brain, only around 30 percent of axons are myelinated.
The man who explained all this to me is Dr. William Richardson, a research scientist studying neural development and plasticity—the brain’s ability to reorganize itself by creating new neural connections throughout its life—at University College London. Richardson is one of a growing number of neuroscientists who think that myelin has been underappreciated in terms of the role it plays in the central nervous system. I went to visit him on a gusty winter’s day to understand more.
Studies over the last few decades have indicated that myelin is more complex than we thought. Experts used to believe that myelination, the first surge of myelin through the central nervous system, was a process limited to the early years of child development, but we now know it often continues for far longer—sometimes well into adulthood. There are also signs that the brain might be able to choose to myelinate naked axons if it receives sufficient feedback that they are being heavily used.
This last point suggests to Richardson that myelin plays a role in learning—formerly thought to be the preserve of the gray matter. Richardson and his team created a series of mouse wheels with rungs removed at random, and then they set mice running on them. Typically, most mice would learn to run on these complex wheels very quickly, no matter how strange the arrangement of rungs became. And they did, unless they had been robbed of the ability to myelinate axons, in which case the learning process took much, much longer. The neurons still fired together and wired together, but nothing was coming along to then speed up the circuit.
I sat with Richardson for an hour or two in his office and watched his videos of mice running on their wheels. I had promised myself that I would not ask Richardson about the potential for future therapies that his work may hold. I don’t know why I felt so strongly about this. Maybe simply being out of doors with a tape recorder and notepad forced me to assume a more objective, dispassionate bearing. Maybe I felt that by asking him I would be bringing a third entity—my overbearing disease—into the conversation.
In the end, of course, I gave in and asked him anyway. Richardson thought very carefully for a few seconds and then allowed that it was possible that the cells scattered through the brain that seem to be monitoring axon use might one day be convinced to remyelinate after damage from disease. He mused that it might be beneficial for MS patients simply to keep learning new things.
That last thought has stayed with me. It seems not just wise and optimistic but an idea I can actually do something with. Maybe sitting down at the piano is a meaningful form of therapy. Maybe learning Spanish on audiobook could help a little bit. Maybe, when Leon comes to me tangled up with another of English’s endless irregular verbs, I should look up why this particular verb is irregular in the first place, and in doing so I might be aiding both of us in some tiny but happy way.
7.
Hyde
ON THE COAST ROAD, THE sky and sea are two kinds of silver meeting; the wind-farm rigs hover on the horizon, huge but flimsy. Here, I am thinking, is a dangerous day. For the last few miles I have been looking for signs and signals, augurs of the hours to come. In other words, I am on my way to a neurology appointment.
It’s a routine appointment in late March, and I have be
en enjoying the prospect of seeing Dr. Quill again. As I brushed crumbs from my shirt a few hours earlier and even tucked it in, I glimpsed Sarah smirking at me from the bed, knowing that I was just seconds from staring in the mirror and asking: “Does this work?”
But at the outpatients unit I find that Dr. Quill is passing me over, just for the day—not to Koenig, my MS specialist, but to yet another new neurologist. She is very tall and very young with bright eyes and a brisk, emphatic handshake. She tells me she is delighted to meet me. She tells me that she has seen my brain scans. She leads me into a room with a handful of monitors, all of which depict cross-sections of a brain. The silvery lines of an MRI image make the bones of the skull shimmer, while the brain within is a grainy shadow, as if buried beneath storms.
So it is Wednesday, and for the first time in my life I am staring at my brain. I am sitting in a crumbling Victorian room in a crumbling Victorian building, and I can see my brain right there on the screen in front of me. Actually it’s on several screens in front of me: different sections, different angles, different resolutions. All told, there is plenty of my brain to go around.
I can meddle with it, to a certain extent. I can take the mouse—this is allowed but not encouraged—and spin the scroll wheel. And then, with that peculiar corrugated chug, I suddenly fly through this ugly gray mass, from the bottom, with its arresting and grim hint of a lamb shank, to the top, a rumpled plateau enlivened by the occasional dark river of vein or artery.
It does not look like a pleasant place to visit. But visiting is an idiotic thought. It strikes me suddenly: this is where I live. I have spent my whole life inside this gritty, ghostly lump, even if it has taken thirty-six years and a certain degree of catastrophe to lead me to this lofty perspective. It feels, in a giddy sort of way, like escape, but I know that I have not escaped. I am still in there. My brain is still in there. My brain is looking at my brain. If I’m honest, it is thinking: Is this it?
The Inward Empire Page 18