I took the pills, and I did feel a little chirpier. And yet I knew. I knew that vitamin D was not the answer. The things that were going on inside me felt too big to be resolved by small, rubbery pills. Within a week I was back at the GP’s anyway. The Lhermitte’s had increased in force, and my GP announced it was time to see a neurologist.
I was referred in early March, and I soon had an appointment booked for May. I had only two months of limbo in total: a marvel of medical progress, given the history of neurological illness, which extends wearily through entire lives, and mingles at times with the histories of witchcraft and demonic possession and the things that get done to people who are suspected of falling foul of that sort of stuff. I had time to fill, though, so I had a plan. Almost an anti-plan. I would not look for myself online. I would not head to Google or WebMD. I would not try to use my time, as I waited for my neurologist, to become an amateur kind of neurologist myself. This was cowardice, but cowardice delivered with a certain theoretical rigor. I have always understood that when there’s nowhere to go, it’s probably best to go nowhere.
And I did. When I think of those long spring weeks, it seems that I spent almost the entire time on the twenty-seven, a bus that travels between Westdene and Saltdean, two cheerily unimportant suburbs on either side of Brighton and Hove. Nothing is quite so prosaic as a trip by bus, and yet nothing has the same hypnotic capacity to gently transform either. I am a king when it comes to falling asleep on the top deck, toward the rear, and I am never quite the same person when I get off a bus that I was when I got on.
This is all especially true of the twenty-seven, a route that, strictly speaking, doesn’t really go anywhere, describing a higgledy loop into Brighton and then out again. There is a poetry to it, regardless. Much of this journey takes you along the coast road where, on the right kind of day, a churning sea meets throbbing clouds, while the safety fencing bucks and wriggles along the crumbling edge of the white cliffs for miles and miles. It’s almost a shock when the coast opens up like this. Brighton is a cramped place full of limited horizons. Suddenly, out here, the sky and the sea erupt around you. It’s blinding.
I normally take the twenty-seven from my home in Saltdean into work. Now, though, I took it and stayed on past the regular stop—past any stops—as the bus obligingly arced me back and forth for dozens of empty-headed hours. I was not avoiding work, just as I was not avoiding my family: I diligently answered emails, and Leon was often with me, shaken to sleep by the engine. I was simply starting to realize that I was changing in ways I did not understand, and the bus seemed to provide a little breathing room while that happened. Riding the twenty-seven, as the wheel met the tarmac, my internal vibrations were canceled—or rather universalized. Everyone else suddenly had them too.
It was time well spent, I think. Aimless and on a bus bound for nowhere, I found myself thinking about exploration, about movement into uncertain territories, about guides, and how clear it was that I needed one. I thought about the neurologist, who I hoped would soon make sense of my symptoms (and possibly even dismiss them: another alarmist, another time-waster).
On the day before I saw my neurologist, I told Sarah that the only way through any of this was to get right to the point. I would learn from Ben, and I would not be angry. I would be upfront about my fears, and I would say, in effect, just two words: Help me.
The next day I returned to the neurological ward just outside Brighton that I had last visited when I was sixteen and my brother was having brain surgery. The place had barely changed, a bright sprawl of corridors, separated from the main hospital and accessed via two flights of stairs, down, down, down. Inside, it was cool and airy despite the sense, after all that descending, of being deep underground. And it was so muddling in its branching hallways and dead ends that its navigational challenges seemed born of a desire to mirror the shifting, confusing landscape of the neurological patients themselves.
Like so much of the modern NHS, there was a pluckiness to this building. An immediate jolt of Blitz spirit you felt as soon as you entered it. The whole place was like a 1940s code-breaking installation churning in the basement of the hospital. Why not? Both neurologists and cryptanalysts are dealing with an enemy that is hard to anticipate. Both are working with imperfect information. And at the center of it all?
His name is not Quill, but that will have to do. Quill is as close as I can get you to him without sacrificing either his delicate, scrupulous nature or his privacy. Quill will do.
And Quill is a riddle, or at least he sounds like one whenever I try to describe him. He seems like an extremely tall person to me, even though he is actually around my height, so entirely average. I remember him as unduly thin, and he is not—not particularly thin, anyway, just average, like me. Equally, I get the sense he is witty, but he has hardly had a reason to try and make me laugh. Maybe I am simply responding to his evident quickness, to a mind that darts.
Like many specialists, he seems to have come from a different era: a young Victorian. Most confusing of all, he is one of the most important people in my life, and yet I have met him on only a handful of occasions, and spent less than an afternoon, all told, in his company.
Much of this is transference, I am sure, but I felt it almost immediately: a rush of grateful attachment. As I think back on my first meeting with Dr. Quill, deep in the scramble of the neurology wards, I can’t help but project things into the memory. I can’t seem to leave the thought of Quill alone.
Quill was not initially that interested in what I had to say. I imagined we’d go straight to the question of a history, but the history came second. Quill was polite as he showed me in and found my file. He smiled at my nervous chatter, but he was focused largely on what I looked like and how I moved, and in the rhythm of speech rather than the content.
Quill’s eyes are large, and they move around very quickly. The day I met him, he looked canny, capable, and watchful—and gently, appealingly, awkward too. He seemed one of those men who forever struggle to hide the schoolboy they once were, wearing his shirt and tie like a uniform and in a manner that somehow made it clear that he would probably dress this way regardless of whether he was coming into the hospital or not. Yes, I liked Quill immediately, even as he then forced me through the gamut of twitchy dexterity challenges which I now understand are the diagnostic front line of neurology—the quickest way to get inside somebody else’s head without drilling.
The most common observation made about neurological examinations is that they are a lot like roadside sobriety tests. In fact, they basically are roadside sobriety tests: walk toe-to-heel in a straight line, touch your nose with each finger in sequence, lean in and stare while a torch beam plays across your pupils. Having a neurological examination that day, I felt that I had been pulled over in some manner of speaking. Everyone else got to race by on their business, but I must wait on the margins and fret.
What these tests are really telling you, though, is that the brain is hiding, and its secrets are not easy to get at. When I heard that I was about to have a neurology exam, I expected machines and scan lines, wires and electrodes and those sticky pads. I expected a direct communion with science, which for me meant technology. My brain would speak and the machines would listen and understand. In truth, it is all far more personal than that at first. The machines will come, but for now the doctor must watch and listen, must get at the brain through the brain’s compromised vessel.
Finger-tapping, gaze-tracking, measurements of gait: I was subjected to a fierce and benign scrutiny that day. Doctors, almost alone among professionals, are allowed to really stare at other people, and the best of them indulge this allowance as much as they can. I failed many of the tests I was faced with in an amusing fashion, but I probably would have failed a lot of them even if I were entirely healthy. Quill managed to separate my innate lack of physical ability from genuine neurological clues.
Then, once we had sat down again, he finally leaned toward me and asked me how I w
as feeling right now. Doctors are allowed to do that too.
I launched into my tumor fears—fears that were announcing themselves to me even as I spoke them aloud. When I mentioned Ben’s case, Quill made a note of it in tiny handwriting and asked what had happened. I explained that the tumor had been removed, and I could tell that, for a second, Quill was thinking about crossing Ben out entirely. Sensing the problematic symbolism of that, perhaps, he instead wrote something equally tiny next to his original note and drew a wonky line around it, walling it off from the rest of my history—present but now deemed irrelevant.
After that, I told Quill what I’d been telling Sarah for the last few months since January: that I just felt wrong and I didn’t know what was happening to me. The world of touch had changed, and ever since that day in February when I met Sarah in the coffee shop, I now buzzed when I moved my head forward. I caught at this point a millisecond flash of recognition, a cataloging impulse which was quickly and elegantly disguised, and then Quill asked me to continue. I told him that every day I had the sensation that things were spreading outwards, that fresh defenses were falling and new territory was being lost. “You feel like a battleground?” Quill asked me, and I laughed. I told him: I feel like a building that is slowly being burgled. Vital doors are breached, valuables are disappearing haphazardly, alarms going off that nobody else hears. If only I could keep track of what is being stolen.
“Go back,” he then said to me. He may have touched my arm to signal that this was important. “What has the last year or so been like? Even before your hands started tingling? Anything strange?”
I went back. I tried to, anyway. I skimmed over my recent life, and didn’t really see anything worth mentioning. I did not suspect that my door handle problem might be connected—or that it was potentially even a problem rather than an amusing curio. I missed a strange morning, over a year ago, when I woke up in our old house and everything just ached. Sarah only remembered this long after the fact, when she was looking through her old search history and came across a flurry of inquiries into Hodgkin’s lymphoma. Life is full of symptoms we ignore, or investigate briefly, only to set aside. Mine was, anyway.
Rather than presenting these details, which might have been useful, I came up with others that I assumed might be relevant, perhaps attempting to tilt things in the favor of a milder diagnosis. I mentioned Leon, who we carried around a lot at that age. I mentioned moving, with all those boxes that needed to go into the loft. Plenty of opportunities to damage a neck.
Quill nodded, politely, but I don’t recall him noting any of these last musings down. Instead, before he booked me in for an MRI and scheduled another appointment to go over the results of that, he shuffled his papers and knotted his hands together. Long fingers, pale skin. A careful, slightly Holmesian meshing that seemed to verge on parody. Or perhaps experience had simply taught him that patients tended to need this sort of theater in a doctor.
“From a diagnostic point of view, I can’t see anything wrong with you,” he said at last. “All we have to go on is the things you say you’re feeling, and that’s good—that’s good.” We smiled. But he wasn’t finished.
“From what you’re telling me, I think you have some kind of lesion on your cervical spine.” My eye started to twitch. This definitely sounded less good. Like most people, I am able to live with the knowledge that I have something as crucial and delicate as a spine only by ignoring the fact as much as possible. And now I had a cervix too.
And yet, at the same time as I was starting to worry again, I also realized that Quill was much more of a magician than I had expected him to be. My spine? All that from watching me pat my own head and walk across the room?
“There are three main reasons why it could be there,” he continued. “You could have injured your neck somehow—it’s true you have no symptoms above the neck?” I ticked off my catalog of buzzes and aches: feet, legs, arms, fingers. He was right: nothing above the neck. “So injury is definitely a possible cause. Then it’s possible that you have inflammation in your spine as a one-off. Some people just get an inflammation and then it goes away.
“With some people, though, it turns out to be more serious than that.”
Looking back, it is all so obvious to me. He knew. He knew instantly.
I am going to be completely honest about this. Since I first heard about MRIs, I knew I was going to have one sooner or later. I knew that machine was for me.
Ben was obviously at the heart of this certainty. A desire to follow my older brother’s path, regardless of the bucks and turns. This sounds ridiculous, but I have a clear memory of Ben in hospital, on one of his later relapses, being readied for an MRI as he sat on his bed. The doctor is filling out a form. Dental work? Piercings? Neither, says Ben. The doctor asks: “Have you ever been in a magnetic field before?” And Ben answers, worldly, flirtatiously even, “Oh, yes.” Ohhhh, yes. I took note of that moment. The sheer weight of experience being expressed was intoxicating.
I was fascinated by these machines, looking like the time tunnel apparatus in movies like Twelve Monkeys—or rather it’s the time travel apparatus in movies that looks like them. When I pictured Ben, lost in the process of his diagnosis, I almost always saw him in the half-light of an MRI interior, lying flat, hands held together gently on his stomach, staring at the ceiling that curves inches above his head. It always felt particularly lonely: this scenario seemed to speak most clearly to the way that, when we are ill, we are especially isolated from the rest of the world.
“What does it sound like?” I asked him once.
“It sounds amazing,” he said. “It sounds like music in there.” Ben always liked odd music.
I do not expect this to be universal—in fact, it sounds completely insane—but I have often tangled MRIs up with love too. With love revealed for what it might truly be: lights firing in the darkness of the brain. And this association is Sarah’s fault, I will argue. On an early date, desperate to appear unusual, I heard myself telling her of a magazine piece I had read about Parkinson’s disease and algae. The algae was photosensitive and bioluminescent: it could be made to light up, and to react to light from elsewhere. The idea is that doctors would place little dopamine machines in the warm dark spaces of the Parkinson’s brain, and they would use the light to trigger the machines to unleash their chemicals when required. No need for electricity, no challenge to the brain’s delicate wiring. Sarah actually licked her lips at that, and I remember it: she was physically thrilled at the thought of someone whose interests were as medical as her own. And over time the memory twisted together with love and a notion of how thoughts in a brain were ripples of light in an MRI, blood flow suggesting synapses firing. Unseen in the darkness of the skull but perhaps answered, nearby, in the darkness of another skull.
And so my own MRI came around in June, outsourced by the NHS to an improbably fancy private hospital in the sticks: a commuter hotel with kidney bowls under the beds. Sarah and I lent Leon to her grandparents for the morning and took the bus together. The bus was delayed, and I was grateful for the rising panic that I would miss my appointment, because it stood in front of a greater panic—that I was about to climb inside a tube for the best part of an hour while a magnet more powerful than I could imagine focused its attentions on me to the extent that the protons in my body would all line up the same way.
Nasty setup. You meet the radiologist, who will sit behind glass, seeing the scans as they appear in real time. You will not get to see these scans. This radiologist will be eager to tell you that they cannot read the scans themselves, which only makes you more certain that they can read the scans and they’re just lying about it. On the way out, you will study the radiologist for any clues, any tells, to what they might have seen. Whatever expression they assume as you walk past will contain dark certainties.
But before that, the machine itself. There is something religious about an MRI scanner. It has an otherworldly charisma, sitting vast and curvy in its o
wn room. Voices dip. Everybody seems to tense up in proximity. You almost want to leave a tribute of some kind. Looking back on this—I have had several MRIs by this point, and when they ask me if I have ever been in a magnetic field before, I can now answer, Ohhhh, yes, for myself—I am always somewhat surprised that they are not surrounded by an annulus of eagle feathers and pinecones, reverently placed.
I am laid out on a gurney. Headphones are wedged over my ears and a cage is clamped to my head. I feel that rush of panic I always get from enforced stillness. Then voices. Suddenly, there are two people standing over me, and I can see neither of them.
“Bertie is here,” one of the voices says. “He wants to put in the needle.”
“Fine by me,” I say chirpily, while internally I am thinking: The needle?
“He hasn’t done it before. It’s training.”
“Okay!” I say, with exactly the same chirpiness, so that I sound insane.
There is fussing. A jab in my arm. Something cold starts to trickle down my elbow.
“Bertie only gets one go,” says the voice. “I’ll take over, Bertie.”
The needle is for contrast: they are dipping my brain in ink so that the MRI scanner will be able to see the damaged bits. And then I am rolled into the machine. Gray plastic curves overhead. It makes me think of the rounded plastic of airplane luggage lockers, except this is what they’d be like if you’d decided to enjoy long-haul travel from the inside of one. Airplanes feel right, in fact: that same sense of a suspended life I feel at takeoff, that same sense of being apart from the rest of the world, of wondering how I got here, and wondering if I will be allowed to return.
The machine fires up. The sound is industrial, intensely loud. There is a sound of thudding, slamming, high-pitched whining, and a sort of stickiness, as of large things coming together and coming apart with wet reluctance. Music? More than anything else, MRI scanners sound like a factory involved in the large-scale production of syrup—a factory that has been constructed, for reasons best left unexplored, somewhere behind the bridge of your nose.
The Inward Empire Page 8
