My illness itself was changing throughout this period. The maddening cognitive tricks seemed to be retreating and my speech was improving, while my physical symptoms became clearer and more pronounced. An ache in my calves spread to my thighs, to my groin; I needed to rest every half hour or so if we headed into town. I got a headache most evenings which felt like a metal band was tightening around the top of my skull, and in the morning I would discover that I had been gripping my hands so fiercely during the night that my fingernails had left angry little dents in my palms. The idea that I might ever feel fraudulent about MS became hilarious to me. Even when MS seemed nearly silent, I would have a strange, warming, internal tremor that gave my voice a little quaver, and at its worst, any kind of overexertion would make me feel like thin rods of metal had been pushed down through my arms and legs, down through the pelvis and the inside of my thighs, as if someone had straightened a metal coat hanger and slid it into me. One afternoon in London, visiting the Courtauld, I saw one of Degas’s ballerina bronzes, and moving in close noticed part of her wire frame protruding through an elbow. I laughed out loud. Recognition.
Largely, I managed to take these things as they were: my MS was coming into focus, and I refrained from trying to make any more sense of it than that. I had the occasional lapse into florid certainty and grand proclamations of the kind I had shared with my work colleagues when we went out for a drink, but only when someone was stupid enough to ask how I was really doing. Most of the time, MS was something private and quiet.
Throughout all this, Leon dazzled me. Leon, whose eruption of new tricks was far more interesting than anything my body could come up with. She was growing so quickly again. Each new day there seemed to be more of her—longer limbs, longer hair, rounder cheeks. And there was more to her mind too. I could say that this was because of the dendrites tangled on top of her neurons, stretching out their arms as if waking and yawning. But why phrase it like that? Why give neurology absolutely everything? Leon had made new connections, had uncovered new abilities. She had discovered a new appetite for experience.
One month it was sentences. “Me eating an apple, Dadda.” And she was. The next month it was time—the past and the future. “Me used to have a lion with bells on, Dadda.” And she did. It is probably still under the sofa. One month it was lying, one month it was jokes. My favorite leap was nuance, the idea that “Me supposed to have a chocolate egg” is a stronger formulation than “Me want a chocolate egg” because it removes her desires from the equation. It makes the chocolate egg my problem. It makes it inevitable. (On my very favorite occasion, we passed an old blue gas tower, its sad gantries rusting and untended, on the edge of Brighton. “Whaddat?” “It’s a gas tower.” “Me supposed to have a gas tower one day.”)
I sensed that a strange constellation was growing around Leon. Every day she would add—and I would add—to the nimbus of ideas and traits that I associate with her. That she is a performer. That she is a loner. That she is anything but a loner. This constellation of opinions about my daughter would grow so fast it soon felt like a little galaxy surrounding her.
And it was a danger. I knew this. I knew that this must be fought against. It is so hard to see our children the way they really are. This is the challenge, or a part of it. To see through our hopes for them, and our fears for them, to get at the simple truth of them from one day to the next, to understand and love the honest flux of them. And every day this gets more difficult.
One day this firmament around Leon will be fixed in place—an awful day when every fresh anecdote seems to start and end in the same way because it is getting at the same idea of her, because it has already come to its conclusions, because it is dealing with a caricature. This is the fate of all charts and all maps: one day exploration ends.
What I want, I decided one morning, waking up next to Leon and Sarah and glimpsing them, briefly, for one wonderful confused moment, as strangers, is to see these people as they really are, rather than to view them through all the lenses I impose on them. MS had made me aware of my perceptions. Now, I thought, I must work out how to move beyond them. I must try to spot the things I am missing.
I was missing something important. Sarah and I both were.
In fact, we were missing something about perceptions. When Leon looks at books and toys, she holds them up very close. When she watches the TV, she stands right next to the screen as if receiving the unfolding narrative through the power of scent. All of this points to something so obvious, so utterly, inescapably obvious, that our own conclusions up until this time seem shameful. Oh, we had thought, Sarah and I, Leon is really one for detail isn’t she?
Well, she might be. But more pertinently, Leon is really one for not being able to see.
By late summer, we were back at the hospital. This time, though, there was a dark novelty: we were not there for me. The three of us were in the waiting room of the eye unit in Brighton, where we had been sent by a health visitor—her two-year check-up, and the last, somewhat implausibly, before she goes to school—who had noticed that Leon struggled to see pictures in books unless her nose was right up against the page.
Leon played on the floor of the waiting room where there were toys laid out. Sarah and I sat rigidly side by side: neither of us felt able to cope, but we were both just about holding it together by propping up the other one. This part of the hospital was old and due for redevelopment, and as a result there were marks on the floor by every door and wall that showed where the new doors, the new walls, were going to go. And they were close to the existing ones, always an inch or two apart, as if the building was having its own proprioceptive deficit attended to.
Except proprioception is my world, and this was all about Leon. I watched her play on the floor of the waiting room, and then I watched her, very intently, as she worked her way through a subjective eye test in the darkened office down the hallway. This initial eye test of hers: it was my first time really seeing Leon from the outside, seeing her as her own person, interacting with a grandmotherly optometrist she had just met, agreeing to try on a frame that allowed different lenses to be dropped in front of her eyes so the optometrist could see what happened to her pupils when she focused. Leon was calm and interested for the most part, sparking into happiness as toys were waved in front of her to draw her eye or test her ability to make identifications. She clapped each time she saw a mouse or a pony she recognized. Over time, she grew impatient, but only at the end did she stop cooperating entirely. I think the optometrist got everything except a good look at the back of her eyes.
Sarah had been making eye contact with me throughout all of this. We gripped hands, Leon on her lap, as the optometrist announced with great gentleness that our daughter was extremely myopic and would need glasses with quite a high prescription. “They’re going to start things off with half the strength she’ll need,” she told us, but it was still high enough, we discovered later that afternoon, to make the salesperson in the opticians think we’d made a mistake when we told her the lenses we were after.
A few weeks later, after Leon was bribed into trying her new glasses on in town, she announced that she never wanted to take them off again. On the bus home, she stared out at the sea, at the sky, at the birds flying overhead and the buildings rushing past. The top deck, a seat to herself. “Wow!” she said, again and again, pointing to a very normal part of the scenery and then another. “Wow!… Wow!”
Over the following weeks, my fears for Leon, fears that have been floating around since I took her to see Brian, start to loosen their hold a little. Her world is not perfect, but it actually seems so much better than that. Her glasses reveal the character she has always possessed: she looks curious, witty, up for anything. Now, on the occasions in which she peers at the world very closely, we know that she truly is going for the detail.
“She got this from me,” I admit to Sarah, again and again, although it is already obvious, although we have been over it several times. Still I keep saying
it, and I keep saying it because of the unspoken element. Maybe, I think—and I discover that I have never let this thought announce itself before—maybe poor eyesight will not be the only thing like this she gets from me.
I have an MRI in November, and then Christmas comes, the three of us at Sarah’s parents’ house by the coast, out on the very edge of England, wind roaring in the darkness each night as we play charades and bingo, and Leon fusses with the first toys she has ever asked for herself. I watch her playing in front of the three-bar fire in the living room and want, as I often have, to stop time and keep her here, in this moment. I recognize that once again, in this moment, everything is as I could ever want it to be.
January arrives. A new year, and milestones all around: Leon has her first haircut, bringing her back to the Rosemary’s Baby look but with a young girl’s face rather than a newborn’s. She has her first mugging by seagull, a crucial Brighton rite, the bird swooping in on our way to the library one gray afternoon and snatching a twill of croissant from her fingers. “He said thank you, Dadda,” she assured me afterward. We get this from her all the time now: sentences, but also imagination, a new perspective on the world.
And then, one white-sky morning, I find myself wobbling on sea legs, stuck on the shifting deck of some ship while everyone around me seems to be on dry land. My brain feels like an apple bobbing on water. It is not unpleasant.
I walk up the hill to the hospital, swaying slightly as I go, to learn about the findings of November’s MRI, which I have already almost forgotten about.
Another consultation room, another briefing as my ever-thickening medical folder is brought out. And as my sea legs have already confirmed, it turns out the drugs aren’t working.
The latest scan has shown new lesions—one in the left cerebral peduncle and the other within the right frontal deep white matter within the superior frontal gyrus. Later, when I google these terms, I discover that the gyrus deals with self-awareness and laughter, among other things. It is handy that these go together. The peduncle, meanwhile, is a thing of horrible beauty: a weird bony plant that has bloomed in the midbrain and assists in fine motor skills, balance and proprioception. Best of all, if you search for peduncle online for any length of time, you will find med students preparing for anatomy exams laughing in shared disbelief at what an odd word it is.
Did I suspect the drugs weren’t working? No. I didn’t suspect it in the slightest, despite the mounting symptoms. And in fairness, the drugs were working. They worked beautifully, holding back the real terrors of MS and letting only the slightest of troubles through. The drugs were not at fault: I just had too much MS to go around.
Although there are ten drugs on the market now, most of them are less powerful than the pills I have been taking for a year, so they are of no use to me. This means that I am now left with one final choice. It’s a choice between another drug that, once again, is very safe in terms of side effects but won’t do much to hold the disease back, or a riskier drug, with a handful of potential side effects, that may not only halt my MS but perhaps reverse some of its damage.
I don’t spend much time thinking about the safer drug. Instead, I listen as the riskier drug is explained to me. Lemtrada. The nuclear option. An old chemotherapy drug that, if I choose it, will mean an end to pills I take each day, the mennen that Leon and I have a ritual about remembering every morning and evening. Instead, I’ll be in hospital for five days on infusions, and then I’ll spend a month in semi-isolation as my immune system rebuilds. My old pills dampen the inflammation caused by the lymphocytes, the roving attack dogs of the immune system, when they mistakenly lunge at the brain and dig into the myelin. These pills do this by suppressing the overall function of the immune system. Lemtrada, meanwhile, goes in and kills many of the lymphocytes outright, in the hope that, when new cells slowly remobilize, they will behave as they are meant to.
Sarah and I go through the drug company leaflets after Leon’s in bed one night. While the spin is fiercely positive, the potential side effects are all listed.
The first potential side effect is fairly straightforward. After treatment with Lemtrada, some patients develop an over- or underactive thyroid. It’s a common side effect, but it’s also treatable.
The second, and less common, side effect is also treatable: Lemtrada can very occasionally cause a bleeding disorder in which the immune system destroys platelets that are required for blood clotting.
The third potential side effect is far less common, and far more dangerous. I can barely believe it when I read it in the leaflet.
Treatment with Lemtrada can, in extremely rare cases, lead to kidney disorders.
For a long time after Gene died, there was something I never entirely understood. I never entirely understood why he took that final risk—a last-chance transplant that, as I have always seen it, would either fix everything or end everything.
On a deeper level, what I have never understood, until I find myself looking through the Lemtrada booklet with Sarah, is that Gene wasn’t ill—or rather, his identity was not entirely wrapped up in his illness. Some huge, vital part of Gene was still perfectly well, was still thinking about the future, was still planning, still dreaming, still wondering what to do with the rest of his life.
And this, I suspect, is the part that would make the treatment choice for him—the part that had a vivid, lively interest in the years ahead, in making the most of them. Everything about Gene, every memory, every anecdote, every instinct about him, led back to life.
That January when Leon and I went in search of Gene, I had felt that he had something to tell me, some advice to impart about how to survive in the strange world of the incurable. I could not hear his voice when I spoke with Brian and sifted through the pieces of him that survived in our minds.
But I finally hear it as Sarah and I read about the side effects for Lemtrada. And I know I would have heard it now even if the third side effect had not involved kidney disorders. Because I finally understand.
“How do you feel?” asks Sarah that evening. I know she doesn’t dread the decision, but rather the decision-making process, which, with me, is never pleasant.
“I feel good,” I say. And I do. And then I explain what I think we should do, and I ask her if she agrees.
I had time to wait now, a period of grace while schedules were arranged, while a bed was booked, while old medication was stopped and given a polite two months to flow out of me. This was a period in which I knew MS could return, unchecked in any form, in which days began with no pills—although Leon still reminded me not to forget to take them—and in which I was waiting, I think, for a new lunging burst of sickness.
And one night in February MS lunged at me, out of the cloudless frosty skies of Blackfriars train station, the reflective black river merging with the towers on either bank to form a half-pipe of glittering lights. I was on my way to see friends from a game studio, an evening in a restaurant that floated by the dock in Greenwich. That was the plan. And then, as soon as I put my foot on the platform, stepping down from the train, countering the burst of vertigo I get from standing, a wind picked up and I found I had stepped into the thickest, heaviest fog I had ever encountered.
At the time, it seemed that MS had leaped out of the darkness, and while it had not made me blind, and had not taken me away from the world of things, it had broken that world with great suddenness into bright, sharp fragments that now lay all about. For a vertiginous second, this was no longer London, but a collection of lights and sounds and people pushing past in every direction.
Remember this, I urged myself as I swayed by the train, set rocking by a wave of awareness at my sheer sudden incapability to deal with the complexity around me. Remember how this feels.
The journey across London that I had planned and carried in my head like normal had disappeared; suddenly without it, I knew I had to get to a Tube map to rethink my next move. But when I found the map on a nearby wall, I laughed at the sight of it. Ye
llow and green and blue lines against a white backdrop. I knew that each circle these lines moved through was a place, but I did not know how to get to the circle, the place, I wanted to reach anymore. I did not trust myself to enter this system of friendly geometry and jump from one line to another. I could not project myself into the map without effort, and I did not trust myself to apply that effort.
I must have tried a little bit. At some point, I found myself outside the station, walking a narrow corridor that led down to the sea. Not the sea: a river bank, a huge black river in front of me, the wind very cold, and everything around me, every surface, every edge, unnaturally sharp and bright. SEA CONTAINERS said the angled blue lights on one building. I nodded at it. SEA CONTAINERS. My phone buzzed. I looked down at the screen, itself clearer than I had ever seen it before, so clear I felt I could sense a grayness behind the light that was the image breaking down into pixels. I had been sent an email! I sensed it was important. The email was talking about balance transfer rates for February.
I knew it was February. I knew I was trying to get to a boat instead of the Tube. I breathed in and laughed again, delighted with the sudden emptiness, the silence, of my head, which seemed to allow the complex beauty of the world around me to present itself fully, in an unmediated form. I was not scared. I was calm. I was calm and cheered and rendered useless by everything I saw.
Remember this. I remembered I had come from Brighton, and I could probably go back there immediately. That seemed like a very good idea. I had a return ticket and I still knew—the memory was waiting for me—which platform I generally used to get home from Blackfriars.
I got on the right train and I picked up the paper on the table, folded over to the last page. A crossword. I knew about crosswords. I also knew I wasn’t in the mood right now.
The Inward Empire Page 21