It could be glacial work. “Years of patient waiting were often necessary before the presence of organic change could be proved in those chronic illnesses that are not directly fatal,” wrote Freud. “Only in a hospital for incurables like the Salpêtrière was it possible to keep the patients under observation for such long periods of time.” It was not just the opportunity, though; it was the way it was done. “[Charcot] used to look again and again at the things he did not understand,” said Freud, “to deepen his impression of them day by day, till suddenly an understanding of them dawned on him.”
Many doctors had spotted features of MS and offered partial descriptions of the disease, and some had even sketched the plaques that are formed in the central nervous system of an MS patient. What was missing was clarity and a systematic understanding that distinguished MS from other neurological illnesses. Charcot and Vulpian began by studying tremors, which meant that they needed to develop yet more ways of seeing. Sphygmographs, wrist-mounted devices that measured arterial blood flow, were adapted to record hand movements, and patients were asked to hold large plumes in order to make their shaking easier to interpret. With these tools, Charcot and Vulpian were able to separate MS from what was then called shaking palsy. (It would continue to be called that until Charcot eventually offered a fresh description and gave it the name Parkinson’s disease, in honor of the eighteenth-century doctor who had published the best early work on the condition.)
What Charcot and Vulpian had noticed was that each disease had its own kind of tremor. Parkinson’s patients exhibit a tremor while at rest. MS tremors, however, occur when the patient is trying to do something. These action tremors, or intention tremors, became part of Charcot’s triad of symptoms to be used in the diagnosis of MS. (The other parts of the triad are nystagmus, which is a hectic involuntary movement of the eyes, and telegraphic speech, in which speech is reduced to simple noun-verb sentences. Charcot soon realized, however, that in the muddle of possible symptoms MS trades in, his triad was not particularly authoritative.)
Once Charcot and Vulpian had distinguished the different types of tremor, they were able to see that action tremors were often accompanied by other symptoms. The two doctors noted the visual and sensory problems of MS, and even spotted the relapsing and remitting form of the disease. Steadily, they brought MS into the light.
Charcot remains a fascinating, contradictory character. I feel, in an indulgent way, as if I am one of his patients, so I long to understand him properly, to make the separate pieces of him fit together. His private writings show a man who is caring and intensely sensitive, and yet it has been claimed that he could be imperious with his patients, and that he paraded them at his lectures as if they were animals in his circus.
Still, few would question the brilliance of the diagnostic work he produced in his early study of neurological illness. Charcot had a hospital full of patients that he couldn’t save. Nobody had been able to fully understand what was wrong with many of these people until he came along. In the case of MS patients, you could argue that nobody had been able to truly see them. Charcot may not have been able to save them, but he found a way to see them.
“We are sometimes reproached for conducting incessant studies on the major neurological diseases, which have, up to now, mostly been incurable,” Charcot once wrote. (There is often a splinter of defensiveness buried in his writing.)
What use is this? It has almost come to the point where people have questioned whether this is really medicine…
But can you picture this? “Dear patient, I am a doctor, it is true, but unfortunately I can do nothing for you; you belong to the category of the rejected with which we do not deal!”
No gentlemen, our responsibility is otherwise. Let us keep looking in spite of everything. Let us keep searching. It is indeed the best method of finding, and perhaps, thanks to our efforts, the verdict we will give to such a patient tomorrow will not be the same that we must give this patient today.
6.
The Ghost on the Green
LEON WAS HAVING A BABY.
I learned this on waking one day in February, Leon and Sarah already sitting up in bed, having had what amounted back then to a conversation. Sarah turned to me and told me what I had missed. Congratulations were due: the baby was going to be a girl. Leon looked at me and nodded, frowning, her face suggesting she understood the weight of responsibility involved in all of this.
The baby would be coming from her grandparents—Sarah’s parents—who lived nearby and looked after her a couple of days each week now that Sarah had returned to work part-time. The baby would be made of brown plastic and cloth. The baby would be called Poppy. I can’t remember the exact words Leon used to tell us about Poppy; her vocabulary was growing, but she was still yet to put together true sentences. Even so, she made her point well enough. We were all expectant. And then one evening, when Sarah’s mum was dropping Leon off at the house, the baby was suddenly there with her.
“Is this Poppy?” I asked. Leon nodded, but ducked any more questions about the birth by shushing us: Poppy was asleep. “Do you want to lay her down somewhere?” asked Sarah. I stood in a doorway, smugly delighted with the obvious care with which Leon held her baby and rocked her. This, after all, was our own parenting reflected back at us. I was warmed by its glow.
“Leon,” I said, eager to draw the moment out, to extend the radiance of our parental brilliance a little longer. “Shall we get Poppy to bed before we have dinner?”
Sadly, that word—dinner—was one of Leon’s favorites. On hearing it, some ancient instinct took over and she immediately changed focus. In the single beat of a heart she flung Poppy across the room and raced to her high chair.
Sarah and I stared at Poppy, upside down following a head-on collision with the skirting board. We were both silent. We were both thinking about parental brilliance.
In the days that followed, however, Leon was a surprisingly gentle mother. Often, she was gentle to the point of parody. When taking Poppy to bed at night, she would cradle her in her arms and walk so slowly across the room that even the cats got bored of following her around and wandered off to attack the furniture instead. Granted, Poppy’s bedtime was also Leon’s bedtime, so she had an incentive to drag it out, but she would also leap up every morning, pull back the covers and find Poppy, upside down again, face impacted in the mattress—every co-sleeper’s nightmare—and chatter about how much she had missed her while she slept. I would always stop whatever I was doing when I saw Leon embarking on a moment of comical, prolonged tenderness. Since bringing Leon back from our visit to Brian, I had sensed worry creeping into my relationship with her—a fretful sadness that I could not quite pin down.
But there was nothing sad about watching her with Poppy. It never ceased to be a delight.
I awoke one February morning on a strange planet. I stayed for a couple of weeks. During the days I would see one sun nudging another across the sky; when night came, I would go to sleep beneath interlocking moons.
Diplopia had arrived, more commonly known as double vision, and while I had been expecting it—it is one of MS’s trademark moves, due to the heavy myelination along the optic nerves—it was still a shock to experience it.
Coming soon after my journeys with Leon to see Brian, and then Gene, diplopia shattered the world into two intermingling images. Things in the foreground remained sharp and singular, but my new eyes jumbled the horizon, making the church spire outside my office window a shifting thing that seemed, whenever I moved, to trail a ghost behind it, at times all but merging with its own translucent form and then pulling away.
Luckily my working life revolved around screens, so I could just lean in and get close to the game I was playing or the text I was fumbling to put together and my eyes would be powerless to disrupt things. I would stumble occasionally as I wandered around the office, and I found myself getting very tired in the afternoons, but each morning I experienced a rush of energy that allowed me to rattl
e out thousands of words, and only a few hundred of them would be typos. “Can you still do this stuff?” an editor asked me, concerned, when he found me one day at around three taking a nap on the sofa in the mini video studio we have set up at the back of the office. In truth, I wanted to say, I can only do this stuff. I have the perfect job for MS: sedentary, lots of chairs to slump in and games to pick away at, no thought bigger than one that can fit into a thousand words to consider. If I had come down with this ten years earlier, when I was pretending to work in the IT department of a health insurance company, I don’t know how I would have managed. I don’t know how other people manage, and I know that I should.
The bus I got to work, meanwhile, a bus which usually had BRIGHTON MARINA written on the side, now clanked to a stop beckoning me to BRIDGE MAR MARNIMAR—a location that it was hard not to like the sound of. Sarah was very excited about the bus at this point. She was still obsessed with the sea near our house and the strange metal creatures that lived there. Construction had finally begun on a wind farm just off the coast, and the huge alien shapes of rigs now appeared along the horizon as we rattled into town. These rigs put temporary legs down into the sea, so they seem to float above the waves in silhouette. “I wish you could see them like I see them,” I said to Sarah one day. “They’re not just floating, they’re drifting through one another.”
Beyond spooky boats and the prospect of a day in Bridge Mar Marnimar, diplopia prods a person towards considering the beauty of normal functional sight. How does it work? What happens when it ceases to work? I wondered, at first, if part of my visual cortex, the part that reliably put two two-dimensional images together to create a single three-dimensional view of the world, might have been affected by MS.
The visual cortex is a wonder. Of all the brain’s tricks, this one, to me, feels the most improbable: intricacy undertaken at speed. When light hits the photosensitive cells of the retina, it is transformed into an electrochemical message that is sent, via the thalamus, to the visual cortex at the back of the brain to be processed. The visual cortex is divided into many different regions, each of which handles a different aspect of the image, perceiving color, say, or motion, or fixing the position of the object in view. I can’t help but imagine this working a bit like pinball, like a beautiful pinball table built of gleaming order. The ball bearing races through the inside of the machine, pinging from one bumper to the next, all of which apply their own kind of spin or backspin. Onwards, and then out.
The problem for me was largely mechanical. The likely culprits were not the visual-processing pathways leading to the occipital lobe, which houses the visual cortex, but rather the nerves that supply the muscles which operate the eyes like pulleys. My eyes were no longer perfectly aligned, and this meant that the images the visual cortex was trying to put together had ceased to overlap as cleanly as they usually did. My perceptions were becoming harder to mesh.
I was not prepared for how tiring this was. In defiance of my shattered view of the world, one weekend Sarah took me and Leon to Ikea, a place that we both love wholeheartedly and without question. Ikea, the church of new beginnings, where young couples make tentative plans as they wander the aisles with measuring tape.
Ikea, alas, turned out to be exactly the wrong proportions for somebody who has trouble with the horizon.
We survived the little mock bedrooms of the first few areas beautifully—these spaces have always been my favorite, even if the pragmatic Scandi utopianism they preach has not entirely survived its collision with the crumbling realities of my own house. But then Ikea opens up and grows expansive.
My new enemy had a name: the Strandmon. I had never seen such Strandmon. Ikea’s glorious 1950s wingback armchair, a masterwork of tasteful retro design, blessed with fine lumbar support and capable of transforming even the least reflective of sitters into a Victorian consulting detective, all crossed legs and templed fingers, was suddenly appearing in the showroom as if through a circus mirror, tangling and blending with myriad copies of itself, distorting, fragmenting, re-emerging intact. Everywhere I looked, Strandmon danced past Strandmon, colors shifting, shapes colliding, wings touching wings, legs sliding through legs, an elegant chair suddenly eager to trip itself up.
I felt woozy, so I had to sit down, wresting a nearby Strandmon out of the shimmering, rippling mass of its duplicates long enough to perch on it for a few seconds and steady myself.
“Don’t even think of buying another,” said Sarah. “The cats have already savaged the purple one.”
“It’s dark blue,” I said, and then I staggered on.
Beyond the valley of the Strandmon, something far worse was happening to the Kallax bookcases, whose frames now converged with a fearful geometry, a futurist vortex of sustainable wood pulp that threatened to swallow Leon as we pushed her around in the shopping trolley. At the point where Ikea starts to deconstruct itself, dropping its customers into echoing flat-pack canyons where objects are reduced to slabs of golden cardboard stamped with the sheer, garbled intrigue of their brilliant names, my eyes were exhausted and I had to move with my head down, vision fixed on the smooth concrete floor that, thankfully, refused to play any tricks of its own.
But no, it’s not that my eyes were exhausted. It’s more that there was an angry congestion building somewhere behind them, in the parts of the brain that had to deal with the chaos my eyes were suddenly delivering. So much trouble, and all this from a shift in one eye—a shift, most likely, of much less than a millimeter. A shift so tiny that my eyeballs, viewed in Ikea bathroom mirrors, seemed perfectly normal as they tracked up and down, from left to right.
“It does not take much to start the unraveling,” I said to Sarah as we queued for the tills. Sadly, I often say this sort of cozily apocalyptic stuff by the time we have cleared the cardboard trenches of Ikea’s final areas, so the full meaning of my words, such as it was, was lost.
Still. On the way home, I could not shake off this glimpse of the abyss that had opened up, so gapingly, in a suburb of Croydon. As the train headed back toward Brighton, we moved past converging fields, dark with February rain, and Gatwick, freshly fitted with dual runways that pushed against each other as they cast identical planes toward slightly different points on the horizon. Diplopia is dramatic, but it is not alarming so much as it is disquieting. It works its worst tricks internally, and in doing so it prods you toward the realization that your world is mediated on a number of intimate and invisible levels. You cannot see your own brain. Equally, you cannot see the tricks it works on you, because these are benign tricks designed to allow you to see in the first place.
The eyes are not a thing that work with your brain, like your hands, say, or the villi in your intestine, responding to orders from parts conscious and autonomic. The eyes are an extension of the brain—they are the bit of the brain we all get to see. This may account for how alien they can seem, these strange visitors hanging out in your face, a rubbery dome protecting the bizarre fantasy scene of your iris, stained the colors that nothing else in your body seems to be stained, and ridged with dark craters.
And perception should not always be trusted, even when it is working perfectly. The resolution of each human eye is inferior to the capabilities of the cameras in most smartphones, and even then only the macula and the fovea, the tiny areas at the center of your vision, see things in any real sharpness at all. On top of that, as the information captured by the retinas is transformed into signals that are then processed by all those different parts of the visual cortex, a surprising amount of creative license is applied. Signage in the street starts to say improbable things as the visual cortex makes guesses, and when I take off my glasses, the dead walk toward me. The brain fills in the gaps.
Diplopia fades, and like every other early neurological disaster, it seems less disastrous when you’re looking back at it. For a while, as winter lingered into spring, double vision left glittering traces in me in the form of a sharp burst of panic every morning, which saw me
leaping from bed and rushing to the window, not to see if February had brought snow, but to see if the buildings on the horizon were still firmly placed in the ground and separate from one another.
And it reminded me that I was still sick, in a way that I’m ashamed to admit I found a little comforting at the time. Illness had kicked my sense of self into a swirling nebula of dust. Some aspect of the new personality that was cohering from this dust was clearly rooted in illness. Illness, or some primitive, imperfect idea of illness, was becoming a part of who I was, and this meant that during clear periods where MS retreated to an aching in the legs and a twitching underneath the skin, I was sometimes left feeling fraudulent as well as grateful. Everyone was suddenly being so nice to me about everything, and yet I hadn’t really changed. This is a grim indulgence, of course, and I own its distastefulness. The same disease is reducing other people to wheelchairs and hospital beds, with no free time left to ponder such airy questions as who they are and who they might be becoming.
Still, diplopia was an energizing jolt. It reminded me that my world would be surprising from now on. It made it strange and fit for exploration. It also made me horribly anxious about what might come next.
I have told myself throughout all this that I have been saved, again and again, by a deeply ingrained curiosity—about my brain, about the way its mediation of my experiences, both healthy and unhealthy, affects the world I inhabit.
The Inward Empire Page 16