And yet there are times, going back over this story, that I see stark signs of a deeper incuriosity. One driven, inevitably, by fear. I was curious as to how diplopia might affect the aesthetics of Ikea store design, but I did not ponder what its presence in my life, after a month or so of exposure to the latest medication, might mean for the course of my disease, or its underlying power versus the not-inconsiderable power of the drugs newly stacked up against it.
Diplopia did not shake my belief that the pills were working—or rather that they were working, and were also unmatched by the darker impulses of my own immune system. Medicine becomes a matter of faith if you don’t really understand how it operates, and this faith was reinforced each morning, about thirty minutes after I had taken my pill, with that crimson rush of prickling heat that would touch off inside me. I had hospital appointments around this time, and I chose not to tell anybody I met with about my fortnight in Bridge Mar Marnimar—a fact that everyone I have since related it to finds incredible. But was it incredible? After all, I told myself, a fortnight is a fairly short space of time. Diplopia was not actually painful, aside from a slight headache. It was also very early in the course of my new medication; maybe it had already been cued up in advance in some manner of speaking.
And anyway, I had already made my choice regarding my medication. I had found it difficult, and I did not want to have to make another choice again so swiftly afterward.
The realization that MS is not simply a physical thing took a long time to set in. Every illness has its own emotional characteristics, I suspect. MS, I decided in my first few weeks, is a reflective thing—at least in this form, and in this case, and in its very early stages. As if I would have any idea. Still, I noted that I often seemed to retreat into the center of my skull and had to peer out at the world through MS, as it changed everything in a thousand intangible ways related to sensation and perception. At first, MS was like wearing an odd pair of spectacles.
So it took a long time to realize that I was dealing with something not just wearying, but also potentially dehumanizing. Diplopia was crucial in this revelation. It prompted me to think about the world I had started to inhabit. And when I finally started to look around that spring, I told myself that I suddenly noticed the creeping symptoms of what the books and the websites sometimes called cognitive decline, apparent in terms of memory, general awareness, and a diminished ability to navigate anything that was not enormously straightforward.
How early on did this process begin? This is hard to say. Several months after my hands started tingling, but long before I started to suspect something serious was taking place, I was sitting on the carpet in the bedroom, trying to put an Ikea bed together. As I arranged the heavy parts of the bed, as I shook the screws out of their little plastic bags and into the saucer of a teacup, as I flipped through the instructions and made sure my tools were nearby, I felt something new.
Or rather I felt a new absence of something that had previously always been there.
Furniture construction, when I am in charge, is often a risky proposition. When I’m wielding the screwdriver and the Allen key, putting together anything bigger than a footstool suddenly belongs to the world of detective novels. What is going to happen?
With a bracing suddenness, I realized that I had no idea what I was doing. No idea at all. For a few minutes I went back and forth between the various pieces of flat-pack around me—the big parts of the bed, heavy as limbs; the screws describing modest arcs in their saucer as they settled; the thin pages of the instruction booklet—until I finally admitted that I could not get these pieces to converge in any way. I had an idea in my head: a bed. But I had no idea how the instructions related to the pieces laid out around me, and how all of that, in turn, would lead to the idea of a bed becoming tangible.
A pressure began to build in my head, starting with clogged ears and moving upward until pain and annoyance prodded at my scalp from the inside. This was the hot pain of embarrassment and confusion, of exam papers that do not ask the right questions, of planes that have not waited for you on the tarmac when you have overslept. The paper, the images of the bed being put together: how did these instructions work? Why wouldn’t they speak to me anymore? Which elements did I start with? What did I need to put in my hands to begin?
I sensed a negotiation that was beyond me, and so I sloped into the living room, trailing defeat. Sarah had Leon snoozing on her lap. “I can’t do it,” I said. “Something’s wrong. I don’t know how to start.”
“You never know how to start,” offered Sarah. “Nobody does. Sit down and it will all come back to you.”
Sit down and it will all come back to you. I now sense nursing in that sentence—a little too much of it. And worse: this was not nursing emerging because I was ill. This was the nursing Sarah had had to adopt to get me from one end of a normal week to another when I was perfectly well. Most of the things you should worry about come down to water, I had said. What of the other things, though? Might they be the important things after all?
I got the bed made on my second attempt—the confusion had lifted and I suddenly knew exactly what to do. But now, months into a diagnosis, it seemed that the scuppering of the initial attempt to make the bed was not just my traditional reaction to flat-pack furniture—it was not anyone’s traditional reaction to flat-pack furniture. Even Leon could have made a better go of it than I had. No, there had been a new shallowness there this time, a new inability to focus. It almost felt like there was less of me in my mind. Could that be MS?
In the weeks after diplopia faded, I grew increasingly clumsy. Not only was I still failing to connect with light switches, still failing to get keys into doors. That was beginner stuff.
Suddenly I had two hands, and that felt like one too many. When carrying things, I would drop them unexpectedly and without reason, or I would knock one hand against the other and spill everything over myself. It is an odd feeling to knock one hand against the other. It’s odd because it is rare, because it almost never happens. Your hands are given a degree of latitude to look after themselves. They have earned it, and until now my hands had always lived up to the challenge of their relative freedom.
Elsewhere, it seemed that my ability to deal with subtext was diminished. In the evenings, or if I was particularly tired, I found that I could no longer peer beneath the surface of what people were saying as easily as I had before. I was stuck in the literal.
Confused as I was, I knew that this was probably fascinating. TV drama was freshly dense with additional value: everything that happened was a wonderful shock; I failed to see even the most clumsy of telegraphed twists. Also, I failed to understand them even after they had occurred. “What just happened?” I asked Sarah, halfway through Revenge one evening. Revenge is not a complex work. And yet here I was: I was asking back-from-the-kitchen questions, but I had not been out to the kitchen.
Is this a big thing or a little thing? This is one of the central questions as a case like mine develops. A case in which future horrors hang suspended and I am treated with great delicacy by the people around me, and yet I feel, at certain times, duplicitously healthy, disease contracted down to a slowness with words, or perhaps a few tiny dots of light that sting the very ends of my fingers.
But the big-thing-or-little-thing question is also something that exists inside the disease and occasionally emerges in strange ways. I will be sorting through the friendly jumble of laundry, and I will come across underpants. I know that two people in the family wear underpants like this, and that one of them is small and the other is a bit bigger. So are these underpants little or big? Suddenly, I realize that I cannot immediately tell. I cannot tell if these tiny purple underpants belong to my daughter or my wife. A particular kind of confusion, almost a whimsy.
“They’re Leon’s,” says Sarah brightly, looking over from where she’s sitting, cross-legged on the sofa, controller in hand, leaning in to another car crash in Grand Theft Auto V, a video game about c
ity-wide crime rampages which, like the movements of massive boats in the waters near our house, had become a primary means of escape for her since my diagnosis. “I don’t have any purple pants,” she adds. I briefly think of the underpants I first saw of hers on radiators in her old flat when we started going out, covered in pastel circles, friendly but intriguing: somebody else’s pants. Then I return to sorting, and I think of the end of our driveway where I sort through recycling every other Thursday night, rummaging around in black boxes and dealing with wet cardboard and chunks of jagged glass.
Sorting is the kind of job I like now. It is simple and unambiguous and reeks of easy progress. And one Thursday night in March, winter finally giving way to spring as the evening light lingered and a cold breeze kept me company, I was puzzling, perhaps longer than I should have, over whether something was cardboard or tin, when I heard a posh “Hello!” nearby and looked up to see a man standing in front of me.
This man was tall and elegant and beaming with the sheer happiness of having met me. His clothes were the casual clothes of a man who struggles when he is not wearing a suit: a dusty shirt tucked into flapping linen trousers, a neckcloth, a wide-brimmed hat in dirty cream. He looked sun-weathered even in March, but pleasantly so, stray pen strokes of black hair fringing his forehead. An aristocrat poet, perhaps, sinewy but arty. What was the right word? The right word was statuesque. Bryan Ferry. A. A. Gill.
“Hello,” I said, startled.
He carried a walking stick—not an aid for a limp, but a stick for cheery accompaniment while walking. “I’m Michael,” he said. Or maybe, “I’m Martin”; “I’m Matthew.” He planted his feet firmly and swiveled his shoulders and torso and head to take in the scene, pink evening light turning to dark blue on the horizon. He was so practiced in his movements he almost seemed animatronic. “It’s so beautiful here, isn’t it? A special place.”
I looked around, and I suddenly realized that I agreed. “It is beautiful,” I said. “I love it here.”
He said a few more things, noted that he was glad to have met me and suggested, somehow, that he lived on the green too, just across the way, and that he had lived here for years. And then he wandered off to take in the evening. He was the kind of man who could do that: the kind of man who could take in an evening.
I saw him a few more times, spaced over a few weeks. We always had the same sort of chat. He was pleased to see me. He loved it here. Wasn’t it special? It was only one afternoon in town as I mentioned him to Sarah that she informed me that this man was clearly a ghost.
“Only you see him? And he’s dressed all Renaissance Faire?”
“More Man from Del Monte, but he was out of this era slightly.”
“And this weird chat: so pleased to see you, and isn’t it lovely here, and doesn’t it always stay the same?” She actually tutted at me. “It is textbook ghost.” Putting a hand on my shoulder, she said, “Tell me, was it suddenly a bit chilly around him?”
Sarah and ghosts: this is, remarkably, still the nurse part of her talking. The part that hates what she calls “woo,” and rejects contemporary society’s boundless faith in the healing power of the avocado, the part of her that believes in vaccinations and finishing your course of antibiotics, is also linked to the part that opens a window on the ward when someone dies so their soul can fly like a singing bird.
I talked to a number of people about the ghost on the green. It had struck me at first as an unusual encounter but nothing more. Yet I did not trust my own reading of events after talking to Sarah. Results: a surprising number of people thought he was a ghost. A surprising number of people thought he was a hallucination.
Nobody thought he was real.
My dad thought he was a hallucination. “But it seemed so convincing,” I said as we chatted one night on the phone.
“Hallucinations are sometimes convincing,” replied my dad, and told me a complex story about an episode in the 1980s, working as a social worker, when he’d had to commit a born-again Christian who had started power-mowing his lawn in the middle of the night because Saint Paul had asked him to.
“Did Saint Paul write him a letter?” I asked.
Dad ignored me. “And think,” he said. “If a person like you was going to hallucinate somebody, who would it be?”
“I don’t know,” I said.
“I do,” said Dad. “It would be a posh Englishman who’s very friendly.”
After this, I spent an afternoon searching online, although, granted, as ever, I did not search very hard. Hallucinations caused by MS are rare, it seems. Exceedingly rare. But there are a few examples, sometimes ascribed to the drugs patients take rather than the disease itself, but generally reported by patients with advanced states of the disease.
Most of these cases were visual-release hallucinations, also known as Charles Bonnet syndrome, named for the Swiss naturalist who first described the condition in 1760. This type of hallucination—often of complex images: people, animals, cartoons—is exclusively the result of failing eyesight, which explains its link to MS, a disease in which eyesight is often impaired. Since my eyesight, that recent experience of diplopia aside, was no worse than normal, this suggests that my ghost on the green was neither a ghost nor a phantom of the mind. Besides, people with Charles Bonnet syndrome understand that the things they are seeing are hallucinations as they are happening. The people they see tend to be Lilliputian as well, and these tiny characters are unable to conduct conversations. They cannot speak at all.
Whenever the topic of hallucination and MS comes up, however, I’ll come across a stray comment online that reminds people that the psychopathology of MS is itself under-explored territory.
In the end, regardless, I could not talk anybody around to my way of thinking. Nobody believed the man I had described was really there. “If he is real,” said Dad, “next time you see him, invite him in to meet Sarah.”
I still think the man on the green is real. I have always thought he was real, to be honest. I think he does exist and one day I will bump into him again and the whole thing will be concluded. And I also think that my willingness to at least consider that he might be a ghost or a hallucination—is not MS. Not quite.
Instead, it is maybe something that has grown up alongside it. A cognitive slide I have allowed to take place, a hypochondriac grasping for some kind of mental disorder that I have felt should have arrived, and that, confusingly, sometimes genuinely has arrived. All of this is driven by a reduced confidence in what I am thinking and doing. At times, I am aware of a new thinness to my mental life, clearly visible in everything from my inability to follow conversations to the occasional total absence of an authorial voice in my own head. (“What kind of MS do you have?” patients sometimes ask other patients. “Spinal MS? Blindness-and-paralysis MS?” Sometimes, I have narrative MS, a difficulty holding on to threads or creating new ones. I appreciate that this is probably one of the better forms of MS to have.) And so, even when I am feeling absolutely fine, I have taught myself that it is best to question the veracity of the things I am witnessing and the near-invisible glazes and tints of order I am applying to these things. Pulling all this apart is almost impossible, of course, like trying to turn the pages of a wet newspaper. And is it helpful to ceaselessly conduct this sort of self-examination?
At night, up late on my own around the time Sarah and I discussed the ghost on the green, I would sometimes have a moment of clarity, however. Exhausted by sleep, I would sit, limbs burning, in a chair in the living room, and become fixed in time and space again, surrounded by my own house that ticked and settled in the darkness, back in the moment and suddenly capable of a rare kind of honesty. I saw, for example, that all the drama and exhilaration I was experiencing was still largely internal. I felt like I was living through a series of earthquakes: diplopia, neuralgia, fleeting periods of confusion. And yet I don’t think any of this would have been apparent to anybody who knew me. I apologized more than usual, perhaps, and it was a rare da
y that didn’t end with me sending an email to someone to explain something strange I had done earlier—but nobody else ever seemed to think I had been acting that strangely in the first place. Everything I felt going on was still going on inside, and maybe that meant I was managing everything.
And sometimes I was more than managing. Toward the end of March, I was discovering that there was another side to my particular experience of MS, a wild side that sometimes felt linked to the panic thrill of diagnosis, to the fact that my life had ceased to cruise and had entered what felt like a period of manic skidding. In between the double vision and the Ikea bed that I could not make, I was experiencing a rush of rogue positivity. I often became insanely chatty, filled with fidgeting questions: about medicine, about neurology, and eventually about everything. I would go for a long, speedy walk around my neighborhood—I told Sarah I was making the most of my legs while they still worked—and I would think: Why don’t I know anything about magpies? Why don’t I know the names of clouds? I took to carrying a notebook with me again, so many years after university, just so I could fill it with reminders to investigate all of the things I was suddenly curious about. Do magpies really collect silver? Is there really a kind of cloud called the undulatus, or was that just a dream? What does an undulatus look like? Who gets to name clouds?
And that line to Sarah, about using my legs while I still had them. That was not particularly sensitive, and it was typical of the insensitivity I was starting to express. This reminded me of someone—it did whenever I came back to earth, anyway. It reminded me of Phineas Gage, my handsome brother in neurology, who had become—what was the word?—disinhibited. I did not feel disinhibited when I was feeling good, but I did notice the quizzical, shocked looks I seemed to receive increasingly, during conversations. They were the kinds of looks I might normally shoot at someone who had become disinhibited.
There were positives here, I told myself. MS was revealing not just that I had lived such a timid life. It was revealing that I had lived so much of that timid life on a kind of autopilot. In between moments of catastrophizing, I would sleepwalk, taking the same route to the bus each morning, sitting in the same seat on the bus, having the same kind of thoughts as I stared out of the same window at the same view.
The Inward Empire Page 17