And she learned to speak. Momma. Dadda. Apple. The bright elements of her expanding world were coming into focus.
For both these tricks learning is the wrong word. It does not capture the wild cognitive leaps involved. In truth, Leon taught herself. No, in truth, one day she realized that she already knew how to do these things and so she simply began to do them.
Learning to eat, learning to make noises. This is basic stuff, I know, but still: the darting of her eyes, the eagerness of her mouth to register surprise in the form of a smile lifted all of this somewhat. Leon was changing, transforming from a newborn into something a little more advanced and substantial. A different person was emerging, outlined by her new abilities, prosaic as they would seem to everyone but Sarah and me.
Transformation was in the air. In the first week of July, fresh from the MRI tube, I went with my friend Simon to see a new exhibition on digital art at the Barbican in London. Simon had interviewed one of the artists involved the day before and wanted to see the finished thing; I was largely propelled by an eagerness to get away from the office, where I was having all of my NHS mail sent, each fresh envelope an indicator that there was nothing wrong with certain parts of my brain at least, judging by the jolts of fright they were still capable of delivering.
On the train up, Simon told me about this artist of his and I tried to listen: videos for Kanye and Arcade Fire, work in galleries in LA and New York. And this time he’d appropriated an awkward and flighty motion-sensing camera from a video game console, a device that could track people’s movements and do interesting things with the data. Installation art.
“I think you’ll like it,” Simon said, as we entered the gorgeous ashtray gloom of the Barbican itself. I asked him to sign me in at the reception desk, after seeing how narrow the lines ruled in the press book’s pages were. He raised an eyebrow but did as I asked. “Something’s up with my hands,” I muttered. Something was. They fizzed and sputtered as we walked into the darkness of the exhibition, dying sparklers attached to each of my wrists.
This artist of Simon’s had done something extraordinary. After a few rooms of every video game cliché in the world—stacks of dead consoles yellowing on metal shelving, Mario running and jumping on cutting-edge HD monitors that robbed him of the classic Valium haze he assumed on the old home telly—we turned a corner and found ourselves in a long dark chamber with a wall of pure white light at the far end of it. The chamber was tall, high-ceilinged, and cold, a churchy echo gathering in the quiet air above us.
One by one, the people in front of us stood before the wall of light, where there was a form of shadow theater in play, picking out each person as a fidgety silhouette, and then tracking them as they moved between three panels of blinding white emptiness.
In the first panel, people were still coming to terms with their projected silhouette. They would reach out their arms and splay their fingers. The shadow they cast was eager to fragment, however: black shards turning into birds that scattered into the sky and left nothing behind.
When they moved to the second panel, the shadow returned. But so did the birds, this time wheeling down out of the rafters to pull this new shadow to pieces, tearing and ripping and disappearing with jagged wet chunks of flesh.
If they could handle the final panel they would discover that the shadow was back again, but the birds were nowhere to be seen. Not at first, anyway. Now, when people spread their arms, they grew wings, their sudden appearance accompanied by a great corrugated flapping sound. Silhouette wings with depth, with articulation, with individual feathers fanning out sharply from the wrists to the armpits. It was shocking, the best kind of shock: first somber and then delightful. Despite the almost religious ambience of the high room and the pools of darkness, people invariably laughed when they saw their own wings, even if they absolutely knew what was coming.
“It’s beautiful,” I said to Simon afterward, both of us sitting in a coffee shop deep beneath the shadow of the looming Barbican. “I don’t get how he got it all so right,” I said. “That sense of being torn apart by something beautiful”—Simon started to smile as I continued, hunting for the words—“by something so filled with life. And so necessary.”
Simon, elegant and inscrutable, raised an eyebrow again, perhaps connecting my extreme emotional response—something that was clearly a confused, private reading of simple public art—to my inability to sign the register an hour before.
I realized too late that I wasn’t talking about the installation anymore. So I told Simon about the tests I was having, about the tingling in my hands and feet, about the slow dawning of the fact that I was having trouble walking long distances now that my world was starting to shrink. And I told him about my last meeting with Quill, and those words of his: multiple sclerosis.
Simon did that thing I have since discovered that people do. His face managed to move without moving, a kind of internal settling to accommodate the news. Then Simon shook his head. A long moment passed. “Weirdly, of all the diseases you could get, I would have picked you for this,” he said at last. He then immediately considered what he had just said. “Well, I wouldn’t pick you for this, but I mean, it fits.”
I laughed. “Really?”
“You’ve always loved all that neurology stuff,” he said. “There was that thing you told me about memory a while back.”
That thing I told him. Of course he loved that. I had half-read somewhere that memory isn’t just open to distortion, but that it positively runs toward it. It craves embellishment and fabrication. Each time you remember something, you pull down the volume you’re after, you read it, and then you destroy that volume and rewrite it. That is memory. Remembering something is an act of destruction, covered up by an almost instantaneous act of creation. But this is a compromised creation: it is a forgery, a copy of something that is almost certainly a copy of something already. The life behind us shifts around just as much as the life ahead of us.
And I do like that fact, as it happens. I do like to read about what thinking is, ponder what thoughts themselves might be made of. But Simon was wrong on a deeper level: I like thoughts, but I do not love brains. After all, I have never really liked the fact that I have a brain.
And suddenly I realized I was still with Simon beneath the Barbican. I had not spoken in a while. I changed the subject, asking him about his daughter, who was about to switch schools, moving from primary to secondary, from a school a few streets away to a school at the end of a train ride. Simon was worried: her friends were all going elsewhere.
“This is an opportunity in a disguise,” I argued, complacent in the knowledge that my own daughter would not have to go to school for years. “Everything changes at eleven. Here’s a chance for her to reinvent herself.”
Simon looked unconvinced. “You know,” I continued, “a chance to recast something difficult as something beneficial, to be the new person she wants to be.”
I recognized, too late, that I was talking about myself again. But I also recognized that there was something to this: something to the idea that my disease—whatever it might be—could be an opportunity as well as a catastrophe. A chance to explore, to step away from an old identity and toward another one, even if I had not entirely chosen the next one myself.
Quill had given me hope, if I wanted it. No symptoms above the neck? he had asked. This meant it could all be down to an injury, or a single lesion on the spinal cord. I sensed at the time, though, that he did not think these things were very likely. I also sensed that I did not think them very likely either. And then, in August, I got a symptom above the neck anyway. In truth, I was relieved to be able to put hope aside.
Most of the things you should worry about come down to water, I had assured Sarah back when the problems with our house were all that woke me up in the morning. Suddenly, though, water itself was waking me up, a few drops tickling my skin at the left-hand corner of my mouth.
“I’ve started drooling,” I said cheerfully to Sa
rah one morning, propped up on my elbows in bed and searching for traces of the liquid that I had just felt on my cheek. Sarah found this about as interesting as Leon did—they both headed off to the bathroom to brush their teeth. I lingered for a minute or two. I couldn’t find any signs of my dribbling, and it didn’t matter anyway. By the time I went to the kitchen for coffee, I had already forgotten what I was looking for.
But the next morning the phantom dribbling had returned. And the morning after. I knew this was extremely bad news, but I also knew that I could not entirely get my head around it at present. Sure, this tiny new symptom was announcing an entire disease: it was confirming that I had MS. Alongside that, though, this new symptom was playful. It was a thing in and of itself.
“Let’s not think about it,” I said to Sarah, who surprised me by agreeing. “Let’s just see where it leads.”
This watery tingling sensation indulged me, over the course of a few days, by spreading, from the left corner of my mouth, out along my cheek, down toward the middle of my chin. And it spread upward too, all the way up the left side of my face to curve in somewhere around my eyebrow.
For a while this was like having a river running down my face, a permanent river that could be felt trickling at all hours. A week or so into it I would continue to search, instinctively, for any sign of actual water, but my hands would always come away dry. The river was clearly cool and subterranean, like the brook made by Hans to aid the adventurers in Journey to the Center of the Earth. Like that river, it seemed to be a benign thing. Not exactly helpful in my case, but still an interesting companion.
Many neurological problems are conspiratorial: it is between me and them, and nobody else can really be admitted. I would be at work, talking on the phone, and there would be water trickling down my face. I would be getting the bus on a dry summer day, water flowing over me and nobody else. I got Leon to touch my face with her tiny fingers on evenings when it was my turn to rock her to sleep; the water would stop for a few seconds and then start to flow again once her hand retracted, continuing to flow as she rolled over and started to snore on the pillow I held her with.
Then, a week after it first started to trickle over my face, the river froze. One day I awoke and the river had ceased to move, transformed into a frosty kind of numbness, tracing the same path down my cheek from my eyebrow to my chin. Occasionally I would get a jolt from it: an icy pulse that ran up the entire side of my face and buried itself above my eye. It caused me to shake or twitch, and then I had to admit to Sarah that the river was still there, albeit in a new form.
“Does it hurt?” she asked one Saturday morning as Leon and I were playing with Legos.
“Not really,” I said. “It’s quite nice, really. It’s like Christmas.”
“But it’s Christmas in your face,” said Sarah.
The obvious conclusion was that the river I had felt was actually a nerve. Like any doomed explorer, I suddenly wanted to map this river and find the source.
It was Leon’s birthday, not that she understood that. We could barely understand it ourselves. The scarlet Godzilla who had arrived twelve months ago was now a genial presence in our everyday lives, a smile first thing in the morning when she would awake, a morning picture message if I was working from the office, wearing a saucepan on her head, say, or trying to hug one of the cats. We had decided to celebrate her birthday as a close family, just the three of us. She had loved making marks in a sandpit so much on a recent trip to the park that I had bought her pens and paper as a present. She was fascinated by the pens—the colors, the hard gloss of the plastic—but she was too clumsy to make much practical use of them. Maybe I could use them instead.
I took a piece of paper and started drawing. I was aiming for a side view of my face, and after a few false starts I had it: a nerve emerging like a tall, thinly bowed letter C on the left of my face, but with the hint of a protrusion in the middle somewhere, reaching toward my mouth.
I showed this drawing to Sarah, who recognized it immediately. It was the trigeminal nerve, a long stretch of bundled tissue found on either side of the face, containing both sensory and motor neurons. It allows you to register a kiss on the cheek. It allows you to bite and chew. It is quite a nerve.
A bit of googling suggested a name for my underground river: trigeminal neuralgia. “There’s a society for it,” said Sarah, turning the computer around to show me the logo, a divided face, the darker side scarred with a familiar arc of red.
“One of the worst things about getting sick is how many clubs you can suddenly be a member of,” I said, closing the laptop after scanning a few more links, most of which spoke about limitless pain and the imperfect surgery options available. Trigeminal neuralgia, I noted, is occasionally a symptom of multiple sclerosis.
The limitless pain had never arrived for me, and after a week or so this frosty nerve started to fade into the background of its own accord. Not before it caught fire, however: for a couple of days before the end I marked time by its sudden flare-ups, once or twice a minute, heat racing over the left side of my face and also erupting simultaneously in the flesh between the thumb and first finger of my left hand. Nothing to get excited about. It was just Christmas, lodged in my face, ablaze.
Still, at times like this, when I am discovering new parts of the body, I have been tempted to leave the drawing paper behind and place the wet points of Leon’s magic markers directly on my skin, tracing lines whenever a new nerve ignites, arcing down over the regular spots: the hands, the cheeks, the temples, the ridges of my eyebrow, a point next to the big toe where several nerves converge and the effect is of stepping on spilled droplets of water. Over time, I tell myself, I could photograph these sketches and run them together, creating some kind of living map of hidden paths I have brought to the surface, knowledge I have not earned through study of Gray’s Anatomy and university classes, but through direct experience. Perhaps this is why patients can seem so irritating to some doctors. We understand so little of the bigger picture but on certain details we are, inevitably, savants.
One night toward the end of August, Sarah and Leon asleep beside me, I sat up late in bed and continued to do what I had spent the last few evenings doing. I was researching multiple sclerosis. Not in a useful way, of course. No chance. I had recently read a single line on a Wikipedia page about the blood-brain barrier and run away from all that, sick at the sheer throbbing thought of it, the blood-brain barrier, which I saw as a huge wall of thin sheeting, a cheap shower curtain really, bucking and warping as it struggled to hold back warm, salty tides.
Instead, I approached this research the way I approached everything. Egomaniacally. Selfishly. An investigation into identity. MS—Celebrities, rather than MS—Symptoms. Who else had this thing that I was about to be given? I sensed again that quiet opportunity to decide: who do I want to be? It’s a question that, for me, in my family, surrounded by charismatic grown-ups pitched against one another, always really meant: who do I want to be like?
I found a page on Wikipedia: “List of People with Multiple Sclerosis.” As I scanned down the central column, it occurred to me that I had done this sort of thing before, a long time ago. I hunted for the memory, a tongue darting around after an ulcer. And there it was: back when my parents had divorced. Eleven. A new school, and the slow dawning that I was the only kid in my class whose parents were not together. I felt special, rather stupidly (reading back through all this I see that I have often felt special, and it has always been stupid), but I was simply the first.
“List of People with Multiple Sclerosis.” The hope, of course, was to find someone I already identified with: someone who was aspirational but within limits, within reach. Jed Bartlet from The West Wing was on the list, the character played by Martin Sheen. Of course! I scrolled back through my memories of The West Wing, tentatively, in case there was anything to fear, to reject. Bartlet was a genius, a moral rock and a profound yet mercurial thinker. PhD in economics, president of the United States.
We did not seem to have much in common.
In fact, Bartlet reminded me of my dad rather than me, and his illness was directed—listlessly, and then with antic bursts—by the needs of the plot anyway. It gave him a mournful gravitas that I suspected I would never grow to assume. One good thing at least: when MS appeared in The West Wing, it was always oddly appealing. Bartlet would swoon away in the office. He would bear his suffering nobly on a trip to China and still get the job done.
Bartlet was a bust, in other words, and so were many of the others. I didn’t know who Fleur Agema was, although I liked the tumbling music of the name. I had never thought much about Jack Osbourne, beyond the idea that he had always seemed peculiarly huggable. Joan Didion was Bartlet tier, too lofty an ambition for a person who writes about video games, as was Richard Pryor: another genius, another giant.
And Jacqueline du Pré was exactly what I did not want to think about. My sparse mental file on du Pré read: Cut down in the prime? Something bad that made her a monster and then killed her?
Onwards. Iman Ali was not the Iman married to Bowie. Hal Ketchum had another amazing name, but I didn’t care about country music. Finally, at the end of a few tense hours, I was left with Teri Garr. Good old ineffectual Teri Garr, the watery, porcelain presence in all those eighties movies I had watched as a kid, the one who was always on the verge of tears because Dustin Hoffman didn’t take her seriously in Tootsie. She had MS. I did not know this until I saw it on the screen, but I suddenly realized that she already felt like a friend, like an ally.
And Dustin Hoffman was an absolute shit for not taking her seriously. For not taking us seriously.
It was nice to have Teri Garr with me in spirit. I would need her nearby for the next challenge, which was telling my enormous immediate family about what was going on. In my mind this task loomed in front of me with the miserable floodlit tackiness of a regional telethon. An unpopular cause, only third-tier celebrities available for the main event. Phone banks would be required, and we would all draw on the flickering energy of a brittle host, sweating and staring, culled from work on coach tours and cruises, as we drank cold coffee and punched our way through one call after another. The only truly bright spot would be the running total. How many told, how many left to tell. How long now before we can all go home.
The Inward Empire Page 10
