“Two-minute picture, hold still,” comes the voice in my ears. I love the use of the word picture, as if I am sitting for a daguerreotype. Ridiculously, I give a thumbs up at this, and hit my hand against the roof of the tunnel I’m lying in. So far in! So narrow. Fighting back another moment of panic, and then we’re away. The weird truth is that, on a purely sensory level, having an MRI is quite comforting—if you’re an adult. The brain can’t help but find rhythms within the alien sounds. For children, they pump in nursery rhymes—but who would want to think of a child in an MRI scanner?
I am aware, during all this, that I am becoming a map now. My head and spine are being cross-sectioned, so I am turning into those lagoons, ox-bows, and bleached chalk tracks you see on the finished scans of strangers. Cross-sections of the head—medical cross-sections—always look the same to me: they always look like ridiculous flights of fancy, drawn by someone who has forgotten what a human head truly looks like. The brain is a hasty doodle. The eyeballs, suspended yolk-like for poaching, seem like an actual joke.
They call MRI scanners the Doughnut of Truth in this hospital, apparently, and it’s a brilliant name. It helps explain to me the complex and highly charged feelings I have about them, the mix of grateful terror they manage to create. MRIs are a break from the business of having symptoms and then trying to describe them, trying to turn them into words. You cannot tilt the outcome of an MRI with words at all. You cannot argue with them—they are proof, a verdict.
All of this is suddenly clear to me as I finally roll out of the gray plastic tunnel after forty-five minutes. I blink, run a tongue around a mouth of dry, plasticky gums and someone else’s teeth. I feel like I have been traveling, like I have landed and now must navigate a new set of customs and rituals. I feel, as well, like I have emerged from the machine but not from its shadow. I will feel it, looming, in the background for the next few weeks.
On the way out, I study the radiologist, who looks away. He seems to me to be smirking out of sheer animal awkwardness. Bertie is nowhere to be seen. Maybe this is Bertie.
A month later, in early July, a second MRI: more gray plastic, more alien sounds, more of Bertie and his cold contrast sliding up my arm. This time, it was part of a whole day of tests. An MRI in the morning and a lumbar puncture in the afternoon.
I had not worried sufficiently about the lumbar puncture: that was the problem, I realized, as I was led to a small room with a bed in it and a doctor preparing a range of needles.
In addition to not really worrying about the lumbar puncture, I had made two crucial mistakes in my preparation for it. I had done some research, and I had also done the wrong kind of research. Rather than reading up on lumbar punctures from a patient’s point of view, which would have revealed that Dr. Quill was interested to see what foreign bodies might be floating around uninvited in the fluid that surrounded my brain and spinal cord, I read up on the procedure from a practitioner’s point of view, in which the patient is a raw material: fleshy, giving, but not giving too much. I read up, in essence, on how to deliver a lumbar puncture to myself.
Push the needle in until you feel the first resistance, I had read. Then push through that to a second resistance. First resistance! Second resistance! I was inside and outside at once: I was seeing the needle puncturing walls of clear flex and traveling through grainy human jelly, but I was also imagining the doctor, working by sensation alone, eyes closed for extra acuity. As if cracking a safe, as if reaching into a hole in a wall to grab for something nestled among sparking wires.
It seemed an improbably high-stakes affair, a needle in the back. A needle going through territory that also held the delicate filaments of my spine, filaments I now instinctively understood were made of individual hairs of spun glass, sharp and fine and brittle. Fiber optics. The doctor tried to keep me talking as my panic rose. I lay down on the bed, turned away from her as directed, and held Sarah’s hand, as Leon sometimes does when she is eager for sleep and knows she cannot get there alone. Again: things were happening that I could not see. A tap was being installed in my back, the needle working its way in between vertebrae.
“Video games? What’s it like working on video games?” the doctor asked. Even now, even here, I could anticipate the next question. It was going to be: “So you actually get paid to play games for a living?”
“I’m sorry,” I explained. “I can’t really think about that right now.”
Rude, and I’m sure I apologized at least once more in the moments that followed. And I felt that needle. I felt it huge, scaled up by my imagination so it was like a javelin going through me. I gripped Sarah’s hand more tightly and dug in my fingernails. I felt a rush of nausea. “You’re turning a bit green,” Sarah said, and placed a hand on my forehead. “It’s just panic making you want to be sick.”
For whole minutes I felt sick, thought of wrenching myself away from the bed, pictured broken glass in my spine.
What rescued me from this moment was something very strange: pain. At one point, the doctor must have brushed the needle against a nerve, because the entire right side of my right leg suddenly ignited: the blinding white heat of a magnesium burn, making a nerve that ran from my groin to my toes announce itself in an instant with the tautness and bite of a piece of cheese wire. The whole thing just went up in one go. I contracted, but I also thought: That was interesting. Pain in my leg—real, tangible pain, suggestive of awful physical things which I know have not happened—caused by a needle in the back. Welcome to neurology! Welcome to neurology.
“Almost done,” said the doctor, a minute or so later. She held up a small vial of liquid. “Nice and clear, good job.”
Stupidly, I felt proud.
Tests and the days in shadow between them. So much of my life seemed to bleed away as I moved between one MRI and the next. I ceased to do much in the way of meaningful work whenever I turned up at the office. Thankfully, I knew from the odd glance from my editor that they were aware something was up, but would wait for me to tell them about it. Most of my time at work was not spent writing about games, or even playing games. It was spent in the echoing hallway, out back and away from everyone, where private phone calls are made. I remember these moments very well, and even the memories of them conjure an old anxiety. On hold to a neurologist’s secretary, the whole thing feeling somehow shady, filling me in some dull and persistent way with guilt. This distant world of specialists and their secretaries had suddenly drawn close. I might catch my reflection in a hallway window as I listened to hold music: this is my world now, or I am in their world now.
Luckily I was also in Sarah’s world, and in Leon’s world. We got away for a weekend to a cottage in Dorset that Sarah’s parents were renting. Swanage, which had seemed like the most tedious place on earth when I had been with my mum in my early teens. Now, though, it seemed beautiful: a perfect seaside town, somehow hidden from the rest of the world, accessible only via a rickety ferry and a wonderfully lonely drive down a desolate sand-blown road.
We stood on the flat roof of the place we were staying one night and looked across the bay. With Leon held in one arm and another around Sarah, I felt protected from everything, from whatever was going on inside, from the medical world that I knew was actually trying to help me.
“It’s so weird being back around doctors,” I said to Sarah. “I remember leaving the hospital when Leon was born and looking at the hallways, at the old furniture and the machinery, and thinking: This is great that this is all here, but I’ll be glad to see the back of it for a while.”
“When was your last experience of it before that?” Sarah asked.
I had to think about it. “God, it was years ago. I’d just turned thirty.” I had been on the Bone Marrow Registry for a decade before that, and then I’d had a call one afternoon that there had been a match. I’d gone into hospital for a day and given someone a bag of my stem cells. It had been the best thing I had ever been involved with—although Sarah and Leon had since replaced it.
“You’ve done all right,” said Sarah, as Leon stirred and I checked, now instinctively, on the state of her diaper. “To get Leon in the bag, to get that in the bag, before anything went wrong.”
“Is it going wrong now?” I asked.
Sarah smiled and said nothing, and we went in for dinner.
Days later, I was back in Brighton, and back with Dr. Quill. Some tests were in; others were still waiting to be interpreted. We were gathered in the same room as before, but it was afternoon, golden imprints of sunlight edging along the walls in slow arcs.
Quill waited until I was seated, and then leaned forward on his chair, hands together in his lap. “You have an inflammation of the spine,” he said, possibly aware that I would have no idea what this meant. “And we’re trying to work out why. Some people have inflammation in the spine and it just goes away, like I said.”
“And then there are the other people?” I asked.
“Some people have it because they have multiple sclerosis.”
Something inside me seemed to fall away as he said this. A structural crumbling, rather than a smash: silent clouds of dust rushing outwards. A million miles passing in one soft second.
“Multiple sclerosis,” I replied. I sensed a question was expected of me, but I could not seem to form one. “Multiple sclerosis.”
“Yes.” Quill nodded. He peered at me, watchful as ever, searching for some sign of understanding. “Do you know what that is?”
“No,” I laughed eventually. “I have absolutely no idea.”
“Multiple sclerosis,” Sarah says that night as we sit in bed, Leon snoring next to me, a clammy hand on my shoulder. It is a warm July evening, so the windows are open and the smell of cut grass drifts in from the green. “Mul-tiple scleroooosis.” She is trying the words out, getting a sense of them in the lips, in the mouth.
“That was your first guess,” I say. “Two minutes in. I wake up with funny hands and you diagnosed me while half asleep.”
She gives me a look that says: Now is not the time to bring this up.
And she works her way closer to me. “We will deal with this,” she says. “We will get through it.” She squeezes my hand. “It may be nothing, and if it’s not nothing,” she sighs, “well, if it’s not nothing, it’s a big thing, isn’t it? And we can always deal with the big things.”
Minutes later, as she starts to drift off, I ask: “Will this kill me?”
“Probably not,” says Sarah. An offhand answer, perhaps, but by this point I have been firing idiotic questions her way for the best part of an evening. “It probably won’t kill you directly,” she clarifies. “It may just lead to something that eventually does kill you.” Her eyes rest on me here. A tilt of the head. An appraising gaze that I cannot meet for too long. “You’ll probably die of pneumonia.”
This cheers me up. I know nothing about pneumonia, and I find that, as a result, I have little fear of it.
Soon Sarah is asleep. I sit in the dark and think of Ben. He was on that island for years. But the tumor was resected. The relapses died away. He got back to the mainland, more or less. He escaped.
Could I? I pull out my computer and type the words into Google for the first time. Multiple sclerosis. A sense of how the words feel in the fingers, how they feel beneath the hands. A minute later, I shut the laptop and put it on the floor. In the meantime I have watched the beginning of a YouTube video in which a woman with MS tries to explain what MS is like.
She tries. Her voice is a gargling mess, a choking, backed-up sink of a thing. Her eyes shine, bright and wet. They stare out at me somehow, as if from a very deep setting in her head. A tunnel lies between the both of us, and she is daring me to look away.
Phineas Gage, the Most Famous Neurological Patient in History
On a warm afternoon over a century and a half ago, Phineas Gage and his doctor took a stroll together along the banks of the Black River, just outside the small town of Cavendish, in Vermont. Gage gathered pebbles as they walked, selecting any that were bright enough or smooth enough to take his fancy. Soon he had collected a jiggling dozen or so: an enduringly pleasant thing to have, a handful of pebbles.
Before the two men parted ways, something odd happened. Gage’s doctor offered to buy the collected pebbles for one thousand dollars. Gage refused. And he was furious: furious with his doctor at the thought of being cheated like this. Phineas Gage was a neurology patient, arguably the most famous who has ever lived. The matter of how much Gage’s pebbles were worth was the first indicator that he would never be cured, that he would forever be changed. It was the first indicator that his old self was out of grasp for good.
Not that he would have understood this. Gage was a construction foreman who had had the misfortune to blast a meter-long iron pole through his own head, destroying much of his brain’s left frontal lobe. The accident occurred in 1848, a year in which gleaming ribbons of train track were arcing across America, in constant need of people to clear the rocks from their paths to keep them moving. Gage was the boss of a demolition crew working in Vermont, and one day he was uncharacteristically careless while setting a dynamite charge. His tamping iron—the meter-long pole at the center of this story, which weighed about six kilograms—may have struck the side of the boulder that he was rigging, creating a spark that prematurely set off the explosive. It is impossible to focus too closely on thoughts of what happened next, but after the short journey through Gage’s skull, entering via the roof of his mouth and leaving through the very top of his head, the pole landed some thirty feet away. Gage was knocked flat on his back.
And then he sat up.
Gage survived, but was transformed. A formerly kind and decent man, after a lengthy period of recovery he apparently became ornery, sly, and somewhat dangerous to be around. The frontal lobe is associated with reward, attention, planning, and motivation: the complex business of managing self-interest during social interactions, among other things. Damage to this area left Gage disinhibited—a compact and precise word carrying lavish, cartwheeling implications. It also helped propel him into the center of arguments already raging in the study of the brain and its relationship with the mind: arguments between one group of people who believed the brain was a single unit, all of it working as one piece to create thought, and another group who believed that the brain was divided into modules, localized areas with bespoke purposes.
Confusingly, both sides of this debate felt Gage was clinching the case for them. The whole-brainers saw Gage’s survival as proof that the brain could compensate for the loss of any individual part. The localizers, however, saw his survival as proof that the brain could handle the loss of certain modules, depending on their functions. By and large, the localizers were correct, even if they were wrong about the places they chose to locate specific modules. The whole-brainers were correct about the brain’s inherent interconnectedness, however, and they also may have foreseen the brain’s plasticity—the manner in which one part of the brain can, given time, change its function to compensate for a deficit elsewhere.
More important to a newly minted neurology patient like me, the message of Gage’s life is that neurological events change people—and that some change must be expected. Gage’s conversion from dependable professional to swearing, cheating reprobate suggested that the brain might control aspects of character and behavior to the extent that damage to a certain region could fundamentally alter a person’s humanity. It strongly suggested that what was human in a person in the first place was probably stored inside their skull.
Equally, Gage’s subsequent employment as a stagecoach driver in Chile, a job that seemed to have rehabilitated him, or at least curbed his most problematic new traits, hinted at how creating structure in the lives of the gravely brain-damaged might help them. Gage’s gruesome accident touched upon the central realities of modern neuroscience, in other words, and also revealed the potential for treatment. It tells us that the brain is powerful and fragile, and that it is also
highly adaptable.
What a life. Photographs of Gage depict an almost comically handsome character with high cheekbones and a strong jaw. Put him in a cape and he would be Superman, were it not for the permanently closed left eye, and the somewhat brittle bearing that is suggested as he clutches the tamping iron in his huge hands. It is sad, I think, to see him brandishing the object that caused him so much pain—his fate, and his fortunes, forever linked to the worst thing that happened to him.
Gage died in 1860, aged just thirty-six. Still, in his fumbling, wretched way, he helped change the world. Over the years, historians and neurologists have argued about the specifics of his accident and recovery as well as the wider lessons to be learned from his case, and yet, perhaps due to his diminishing historical context, Phineas Gage remains the patron saint of neurological patients.
And I realize now that, standing on the border of the neurological world, I was looking for something very specific from Gage when I first started reading about him. I was looking for someone like me: someone who had a problematic brain. But I was also looking for someone far worse off than me, a person whose experiences I would never match, but who might still give me context.
I was looking for someone who had endured something I knew I wouldn’t have been able to, and who was still sufficiently engaged with life afterward that they wanted to seek out the prettiest pebbles they could find, and hold on to them.
4.
The Frankenstein Dance
LEON LEARNED TO EAT. BROCCOLI. Apples. The first ground to a gritty paste in her gappy Popeye mouth, eyes registering the pepperiness that the rest of us no longer noticed. The second huge and glossy in her soft hands, juice blending with saliva as she scored the powdery white flesh with emerging teeth, laughing at the tartness, the vividness of first fruit.
The Inward Empire Page 9
