The Inward Empire

by Christian Donlan

  I tell myself: Listen, as far as we know, the human brain is the single most complex thing in the entire universe.

  Yes, yes. But you’d think it would make a more striking first impression. Even so, everything I have seen, everything I have ever thought, is captured on the screens in front of me somewhere, in some wordless form.

  This feels so wrong. To be inside a brain and looking at it at the same time. And for all my explorations, I realize that I am still a tourist at best. I have no real idea what I’m seeing. I don’t know what the various lumps depicted on the scans do, and whether the dark spots are benign or a cause for concern. I don’t know if the veins I see rambling over the surfaces are actually veins at all, and I don’t know if I’m looking at the gray matter or the white.

  Where are the landmarks I have read about? Where is the amygdala, the engine of fear? Where are the hippocampuses, left and right, and is that even the right plural? Where are the neurons, the machinery of thought, grasping and inquisitive, but also spectral, delicate, and nothing like any machine I know of?

  The drama of MS is almost impossible to spot. I expect raging white bursts of light—forest fires burning in the neurogenic darkness. Instead, my new neurologist points out scattered patches of fine mist. That’s where the trouble is, apparently. That is MS. It doesn’t seem very dramatic at all—until, when I stumble home later, I suddenly understand that the mist appeared to be scattered in a number of different locations.

  I can’t remember what I have been brought here to discuss. I can’t remember much of what I am told over the course of our fifteen-minute consultation. I’m pretty sure another MRI is mentioned, though—scheduled for the end of the year, to monitor the drugs I am taking.

  One other thing: I remember the neurologist suddenly asking, on the way out, if I’ve fully grasped what I’ve just seen. I must have betrayed myself somehow, a twitch or a certain blankness. She is asking, I think, in a kind, concealed way, if she showed me too much.

  Too much? That white mist, I want to say, that ghostly landscape, it is too little. It is all too little.

  When Sarah asked how my appointment had gone, I mumbled something cheerful and fake and shut the door to the spare room. I had taken the day off work for the scan, and so I spent the entire afternoon in there alone, which amounts to an aggressive act in a marriage like ours. I was busy at least, carefully rejecting everything that I had seen. Faced with something I could probably understand with a bit of work, I turned away from it.

  It was hard work, this rejection. Luckily, in the days that followed I had help. I had the whole universe. The next morning at work, someone emailed around a little video of Laniakea, Hawaiian for “immeasurable heaven,” the galaxy supercluster that the Milky Way forms a tiny, truly insignificant part of. Galaxy superclusters are the largest objects in the entire universe. Recent changes in thinking about these massive objects have led to alterations in the way they are demarcated, and within the number-juggling and the tracking of swift, silent celestial bodies, Laniakea had been discovered, vast yet delicate, its galaxies flowing together like cars on an LA highway, drawn toward an area of space known as the Great Attractor. On their way, they formed huge spectral filaments picked out in gold in the video. Our supercluster, one of many millions, looked so fragile, a massive, wind-blown feather, arcing and trilling through space, unknown and unseeable until explorers had come along with the right means of revealing it.

  I could not watch this video without starting to cry. There is no time, I thought. That’s what Laniakea tells us. There is no time for a thing this big. Even if we started today, even if we started at the beginning of time itself, there is not enough time to get a sense of what a thing like this means, what it is truly like, what it is capable of producing. Its full capability for wonder is unknowable, and cannot be realized. It is all a waste.

  My brain, in comparison, the measly brain I had seen on the screens at the hospital, started to diminish in its power, which had been, for the last twenty-four hours, the power to make me feel sick and stupid. “It looks kind of like a brain?” Dan, a colleague, said, leaning over my shoulder as we watched Laniakea twisting back and forth on my monitor. “No,” I said, with a little too much force. “It looks like a feather.” My tone announced that the conversation was over, and Dan went back to his desk. With him gone, I opened a document to write something about video games, found that I was freshly wordless, and opted for interview transcription instead, to give the blinking cursor on my screen something to do.

  I had my first symptoms in January 2014 and it was now late March 2015; I was well into my second year of MS. How was I doing? I was doing very badly. But I often told myself I was doing very well. As a result, for much of the first half of 2015 I was a monster.

  Nobody tells you that you will know the bad times by the seemingly good times that accompany them. I spent my early days with MS floating back and forth between a state of absolute confusion and a state of absolute certainty, thinking that I had cracked it, that I finally understood what MS was and what it meant for me.

  These opposing sensations—the fog of complete bewilderment, the toxic Zen of total comprehension—refused to maintain a polite distance. They would flow together, canceling each other out. I would entirely forget one state as I raced into its equal, its opposite, zipping back and forth in days, sometimes mere hours. Opposing ways of being lost. And the worst of these, in retrospect, was the state in which I did not feel lost at all.

  One night in May I went out for a quick post-work drink with people from the office. Around this time, in my memory, at least, I was frequently stumbling over sentences—a clumsiness in my speech probably powered by a growing fatigue—and at work I was often silent, afraid to say a word in case someone noticed what a mess I was and sent me home.

  But I was also, sadly, this idiot going out for a drink with his friends, someone who spoke, more or less, in a clear voice, and who rambled on with a grotesque smugness about all the things that MS had taught him about the world. Someone who seemed firmly in charge of his own life and willing, even, to tell everyone what they should be doing with theirs. This is not someone I would want to be stuck in a lift with. And yet, somehow, it was me. It was me, speaking, from a position of obvious ignorance, of ugly, arriviste certainty, on behalf of everyone with MS.

  I was a surprisingly eloquent idiot that evening, banging on about my grand unified theory of MS, about how it was all about mindfulness, about living in the moment because the future was in doubt while the present was a concrete certainty that could be enjoyed, that had to be enjoyed. Nobody had asked me, but still I spoke at length about my world—or rather, I offered a view on to it in which everything was very carefully arranged to make me look excellent. The drugs I’m on are working, I explained, hinting that the illness was held in neat didactic balance with the rest of my life. And yes, in some ways—look!—MS is even helping me to be a better person.

  I believed this at the time, or I wanted to. I wanted this approach I had found, this helpful, euphoric way of looking at the world, to expand, panoramically, until it explained everything I might come up against. Living in the moment!

  But I forgot things. I forgot, for example, that it is not all about me. Other people have been dragged along on this ride with me, and they may need me to be able to step outside of the moment I am bravely enjoying so much and picture the future every now and then. And beyond that, the ignorance and arrogance: I was discussing strategies for handling a disease that, at the time, I had only just met. What of those who had known MS a long time? Would I have spoken so freely with them, if I could bear to meet them? Would they be impressed by my chirpy approach to tackling the disease we all faced?

  My monologue that evening built to the most insane crescendo, in which I appeared to speak on behalf of my people. And my people, astonishingly, were suddenly disabled people in general. I was acting like the Malcolm X of disabled people, even though, if I had given it a moment’s th
ought, I was not yet disabled, and am still not yet disabled. Even though I had not really considered what it meant to wake up every day disabled in even the smallest way. Even though I had not considered the vital difference between realizing that, one day, I might be disabled through MS, and experiencing an entire lifetime of being treated the way disabled people are often treated.

  “People need to see people like me,” I said to my colleagues, as if my disease was in any way visible to most of the people I passed on the street. There was anger here—maybe that morning I had to stand on a packed bus for five minutes while I secretly, invisibly, had MS the whole time. And there was shame too. Shame about the fact that I had spent the last thirty years letting disabled people iris out in my peripheral vision. I must have done this, because Brighton suddenly seemed freshly filled with them. This was no sudden epidemic. These people had simply become visible again.

  I accept that all of this is me. The egomania. The blinkered certainty. Even the feeling that MS had boosted me to a higher level of awareness and perspective, rather than merely facilitated access to a new and rarefied tier of triteness and self-involvement. This person was me, and is me.

  Still, he had his grim uses. He proved that there is a sense of progress in decline. Nobody tells you about this either.

  Sometimes, like that evening in the bar, I could speak clearly, even if I wasn’t always saying things worth listening to. Sometimes, over the same period, I could struggle with even the simplest words. Strange. And deeply untypical for early MS. I am still puzzling over it.

  In April I picked up a stutter that started out as an object of interest and steadily became maddening. Sentences suddenly exhausted me, the way a trip into town had started to exhaust me, the very thought of it as wearying as the act of walking. Some days I was fine; on other days, sentences appeared like dusty roads, baked by the sun, stretching into the distance with so much opportunity for incident—potholes, collisions, fainting—before I reached the end.

  Is this the thought process of a stutterer? I didn’t know, but even then I suspected it wasn’t. Do stutters come and go the way this one did, dropping by for fifteen minutes, for an hour? Do you even get stutters with MS? I didn’t know. As soon as the stutter was at full force—and at full force it was bad enough that I had to cancel phone interviews for work—I began to doubt how real it was. As words grew harder to finish, I wondered if I was just winding myself up and creating phantoms for myself, finding reasons not to engage. Allan Ropper is an American neurologist who has written a wonderfully pulpy book about his life on the neurology ward of a teaching hospital in Boston. It has an entire chapter on phantoms, false positives, and people who are outright faking. I never felt like I was faking anything, but to my shame my stutter went away when I read that chapter. It scurried away, exposed. The problem with having a disease that’s all in your head is that there are other things in your head at the same time.

  To make things worse, I was starting to lose the odd word by itself. Parts of my vocabulary were flickering in and out of existence, as if my sentences were being fed rattling through some kind of cognitive hole punch. If it was late in the day, or if I was consumed by some worry or preoccupation, I might reach for words and find that some of them weren’t there anymore. Everyone knows a little of this experience, I think, but it was happening to me with annoying regularity—so much in fact that it broke into the realm of gesture, and I started to do a little windmill motion with my right hand to suggest to whoever I was speaking that I was still going to finish my thought.

  There were other ways of coping. At work, I typed more and tried to speak less. Out with friends, I would settle on the periphery of a conversation, permanently exhausted. Only at home did I still try to make myself understood all the time.

  It wasn’t always just words. At some point in summer I was talking to a builder on the phone. Another part of my house was falling down—the host rejecting yet another graft. The builder asked for my phone number. I thought about it. I thought about it some more. I felt worryingly serene. “I’m sorry,” I said, “I can’t remember.” He asked for my address. “I’m sorry,” I laughed. “I can’t remember that either.”

  And this was fine.

  Honestly, it really was fine. Initially I felt pretty delirious about how fine it was. Maybe, I told myself after I had hung up from the builder, I have been a slave to memory for too long. I liked the sound of that, the pomposity of it: a slave to memory for too long. When I was a child, I would spend hours trying to remember all the words to “Dover Beach,” by Matthew Arnold, only because we lived quite close to Dover and my mother loved Arnold, and it would drive her nuts if I started quoting the poem in a silly voice whenever we drove past the seafront in her Morris Traveller. I had most of it down pretty good, but I got hung up on “melancholy, long, withdrawing roar,” which always seemed to bubble up as “melancholy, dark, departing roar,” allowing Mum a gap in which to point out my mistake. That used to drive me nuts, and then I’d drive myself nuts again trying to somehow force the phrase into my brain correctly. A thing I had invented to send my dear old mother crazy had backfired elegantly.

  Nowadays, it wouldn’t have. Nowadays, I just didn’t care. I was past remembering—past remembering even Matthew Arnold, who had said some things worth keeping close about the various iniquities of time and of health.

  “The sea is calm tonight.” Even the simplest, most tangible of everyday things sometimes required elaborate workarounds. I described a shower head as a speaker that water comes out of. When I forgot the word windowsill, I described it as the little pavement that lies next to the glass. I would say that Leon’s funnel or beak needed cleaning when I meant her mouth, and in the rush to write something down on a calendar, I would instead forget calendars themselves, and I would ask Sarah for an alphabet of months.

  And at first it was all so liberating. It was liberating to be able to say, “I don’t know,” and move on, and to have the perfect excuse too. MS, at its heart in the very early days, when you take away the nerve pain, the buzzes, the pops, the intricate unfurling of a new symptom, seemed both an agent of change and an excuse for coping with that change in any manner I wanted—and at the expense of almost everything else. On the good days, it was carte blanche for forgetting everything, and not caring about any of it.

  But it was not liberating forever. I sense now that the enjoyment I’d taken in forgetting is not the work of MS; neither is the speed at which I allowed myself to give up on trying to remember what I had forgotten. These aren’t clinical symptoms, perhaps. No, in my case these symptoms feel worse than that. They’re part of what I feared at first and then forgot to fear—that MS could be such a wonderful, powerful all-purpose excuse I might invoke it a little too often. Without proper care and attention, the very idea of it might become a factor in a slow, steady retreat from the world—until one day I was so far back that I wouldn’t hear its melancholic, dark, departing roar anymore.

  Can you grieve for yourself? I asked myself one day. I was reading Joan Didion’s The Year of Magical Thinking. Didion has MS, but this book focuses on other concerns. It describes the year that followed the sudden death of her husband, and in grief, she suggests, we experience strange things. Things that feel, to me, a lot like certain symptoms I had associated with neurology. Concentration is lost. Cognitive ability is reduced. Word blindness, blundering, the forgetting of one’s own phone number. So was this grief in the mix? Can you grieve for yourself? I asked this, and heard the answer: yes.

  Is that MS, with the vanishing words? Anomic aphasia, or a problem with word retrieval, is caused by damage to the parietal or temporal lobes. It has been seen in MS often, and it is a common accompaniment to many kinds of brain injury. So it’s possible. Is it fatigue? The sheer stress of diagnosis? Or is it a mix of that along with some subconscious decision that my frequently invisible disease needed a means of announcing itself, and that it should have a voice, even if it was found by poking holes
in my own?

  In time, I came to think of MS—and the cruelties, sometimes self-inflicted, that I brought with it—as a hollowing out of the parts of me that I liked, and that made me who I thought I was. It was hard to spot, however, because hollowing is internal, and the mask often remained in place, like the jagged smile on a Halloween pumpkin. (Hollowing—it is a word, I discovered recently with a weird flush of something like pride, that Oliver Sacks sometimes uses for his patients.) I was left with an empty, rattling head, too muddled to think, a person who stumbles into door frames and mutters at his own daughter.

  But only sometimes. One day tripping over words, the next day speaking perfectly clearly. So add unpredictability to the mix.

  And maybe the muttering part of this person had its own name. I had reread Dr. Jekyll and Mr. Hyde in the sweet, sleepy days shortly after Leon was born. It had stayed with me, as it always does, but this time there had been something new about the way it lingered in my mind.

  I have often found myself thinking of Robert Louis Stevenson as I have become ill. He was always a favorite, and I had also been struck by something I discovered rereading a recent biography. Stevenson was a “professional sickist,” at the mercy of various lung illnesses. The biography I read suggested that it’s possible that Stevenson was a great writer in part because of these illnesses, rather than despite them. Maybe the debilitating slumps he experienced throughout his life somehow forced him toward bursts of bright action when he was well. Disease told him that time was short and energy was to be treasured, that his life was a tiny chunk of flaming magnesium.