The very worst of MS remains on the periphery, though. My word-finding problems are reduced, my occasional stumbling in sentences largely gone. Four weeks is a long time to sit and think about things, but I don’t think about MS as much as I expected, and this feels like a victory. Also, my right hand has stayed entirely clear. It is still mine. I spend hours staring at my fingers and flexing them, as if doing one of those magic tricks where the knuckles become an endless staircase that a coin can tumble down forever.
One night in early autumn I decide that it is not just our job to keep Leon safe. We must show her the world, if we are able to. I have been listening to an interview with the New York magazine food critic Adam Platt, and he has been talking about his childhood as the son of a diplomat, which meant he was constantly being sent to distant parts of the world to start over in new surroundings. The quickest way to understand a new place, he says, is through the food, and then he tells a story about being eleven or so and visiting a Vietnamese restaurant surrounded by rice paddies, where he would drink Coca-Cola from a thick glass bottle that he could then hold on to because outside there were people selling rockets that could be launched from the bottle high into the sky above the paddies.
“We need to take Leon somewhere,” I say to Sarah, as we are sitting on the sofa watching the green.
“Barcelona?” Sarah replies. There is no money for Barcelona, but for once that doesn’t stop us. Maybe we are both a bit disinhibited these days.
We are in Barcelona in November for the American election, which feels like another diagnosis, just as Brexit did a few months before. On the day Trump wins, we go to the Museu Picasso, where there are a handful of rooms devoted to Picasso’s struggles with Las Meninas, by Velázquez. The greatest of all paintings, bringing distant historical figures to life before you. Velázquez’s vision is starkly, arrestingly domestic, if such a thing is possible: it always shocks me with its sense of bustling life interrupted. Picasso renders his version in blacks and whites and grays on one huge canvas that dominates the first chamber of this section of the gallery, and then he breaks the image down into sections and characters that line another few rooms.
It’s systematic stuff: hard work, and you feel the effort. The Infanta becomes a ghost, and then a Tube map. The dog is replaced with a piano in one picture. The windows of the chambers at the Alcázar that Velázquez has shut are opened, hundreds of years later, and light bursts in. As I stand there with Leon squirming and bored in my arms, legs gripping my waist, I think: This work of Picasso’s, it is glorious and slightly pitiful all at once. It is an attempt to understand something that cannot be truly understood. Today of all days this approach feels so valuable.
I must return to the world, I announce, and once Sarah has finished laughing at my loftiness, she agrees. I must return to caring about things properly. MS turns you inwards, I think, and I was pretty much turned inwards even before that. It is time for a change of focus.
And Leon is the perfect inspiration. She loves traveling, and she takes to everything with ease. One night we are up past ten, and she’s eating pasta in an outdoor restaurant surrounded by lanes of hooting Spanish traffic. She is completely unflustered as she spears chunks of minced beef on a fork that seems huge in her hands. You’d think she had done this every day of her life.
She is changing. Her voice has picked up a lovely aristocratic croak—she sounds like Dorothy Parker, or a sarcastic frog from a fairy tale. And she is allowing, for the first time, doubts to enter into her world. On our last day in Barcelona she wants to play hide-and-seek in the apartment we’re renting. She counts to ten in the living room, and in the second bedroom I duck behind a table. Her counting drags on longer than expected—she has forgotten nine again and wants to go back and get it all in the right order—and I find myself checking my phone. Looking up bus connections to the airport maybe, or a neurological curiosity I read about the night before. An aphasia, an alexia, an agraphia, a dysnomia. Neurology has all the best words.
I lift my head from my screen just in time to see Leon enter the room. She doesn’t spot me, which means that for a second I get to observe her as she is without me, wide-eyed, totally free of guile, an eager, open face driven by curiosity. I am about to wave, but she ducks out of the room again to continue her hunt. I hear cushions shifting around, floorboards creaking, and then, a minute later, a quiet voice.
“Daddy, I don’t want to play anymore.”
In the seconds it takes me to get to the living room—and for Sarah to burst from the shower—Leon is sobbing madly, face down on a sofa.
“What’s wrong?” we ask. “What happened?”
“I thought you left me,” she heaves out once she can speak again.
Leon, we would never leave you. We would never leave you. In fact, it feels like I have only just started to really see you.
This story of mine. I knew this story, until I tried to write it down. Then I noticed it was not quite the story I had been telling myself it was.
I recently sat across the table from a neurologist—not one of my own neurologists—for an hour and a half and listed all the things I thought had happened over the last three years. All the glimpses of cognitive decline, all the unmade beds, the unopened doors, all the vanishing stutters, the thefts of words and the fogs descending at train stations. How much sounds real to you? I asked. How much sounds like MS? A lot of it, he said immediately. Maybe even almost all of it. But, he added, you will never get two neurologists to agree on anything, so set yourself some different parameters for the evaluation of your own experiences.
I don’t know, the more I look back at it, whether my reaction to my diagnosis was appropriate. Whether it was useful, for myself or for the people around me. I wanted to see MS as an adventure, which sounds ridiculous now, but still. I wanted to see it as a chance to explore this new world I was suddenly lost in, a chance to find my own place within it. I set off to discover the truth. And then I lost my way. And then I made life difficult for everyone around me. Is that my story?
I am aware that not everyone reacts to MS quite so catastrophically. I suspect that the majority of people don’t. At a blood test in the neurology department a few months back I was signing in at the front desk when an energetic man raced through the front doors, skipped the queue and disappeared inside. He was youthful and gloriously full of bounce; I assumed he was a physio. But he wasn’t. I saw him minutes later, emerging from the MS infusion team’s room with a cotton swab taped over his arm. He disappeared whistling and I felt shamed by his briskness, his chirpiness, by the small space that I decided MS must occupy in his life.
And it’s not just MS. Here are two approaches to bad news that I like. Fergus Henderson is the chef behind St. John, a restaurant that serves bone marrow on toast, Eccles cakes with Lancashire cheese, and a brain burger, if you ask for it, which he says tastes like a crispy cloud. Upon learning that he had early-onset Parkinson’s, Henderson felt glum, he often admits in interviews. And then he had a nice lunch and he felt much better.
Or there’s Wallich. In “The Schreuderspitze,” a short story by Mark Helprin, Wallich is a photographer living in Munich at the start of the twentieth century. His wife and young son are killed in a car accident and, silenced by grief, Wallich leaves his business behind and flees to the Alps, choosing a village with a name so stupid that he knows his friends will be embarrassed to visit him there. One day, the idea arriving fully formed out of nowhere, he decides that he is going to climb a mountain, so he starts to prepare for this difficult task. He reads books on mountaineering. He trains himself. He makes some pieces of mountaineering gear from scratch and buys in the pitons and special ropes he will need at great expense.
And then, when his kit is all arranged and his preparations complete, he starts to dream. Over the course of three nights he dreams the entire ascent, the perils and the beauty of moving from rock to ice, of facing desperate challenges and relying on hard-won knowledge to overcome them. On reachin
g the summit, he suddenly understands that the mountain he’s climbed is much taller than he initially thought it was; it is so much taller. The entire world is suddenly spread around him, glittering and bright. And when Wallich wakes after the dream of his ascent, he gathers his belongings, heads for the train station and returns to Munich. He understands, you might say, that he must return to the world.
It would be impossible, I think, not to identify with Wallich in this story. But maybe what I mean is that it would be impossible for me not to identify with Wallich. The first time I read “The Schreuderspitze,” long ago, back when I could still discuss it with Gene, and probably did, I thought: I would do that. I would do exactly what he did if something of that magnitude happened to me. And now, reading it again, I think: I may not have experienced something so boundlessly vast and terrible, but when experience came for me, I did do that.
Recasting myself as an explorer seems, in retrospect, like an indulgence. A way of misleading myself. But I never felt I was giving in to bullshit completely. At the start of this, I felt like I had a decision: I could retreat into my diagnosis or I could see it as a starting point, a chance for something positive. I decided I could be a victim or I could see the wide world of neurology as something vital and interesting and filled with hidden possibilities. That mindset allowed me to deal with something that was otherwise overwhelming—even if it opened the door to phantoms.
And all that worry about the ravages of the mind allowed me to look away from the potential ravages of the body. These are arriving with more force now: the pain and the stiffness of spasticity, the jabbing in the fingers and the palms. A hug that once popped up in the evenings, around six, and lingered for an hour, now wakes me in the morning and retreats only when I go to sleep at night. My left leg is sometimes rigid as I move, and so my neck often hurts because I stretch my head to the right in compensation. I walk funny some days, and I am handling it. We are handling it. Sarah talked to me about cruises last week. I have never wanted to go on a cruise—it strikes me as paying to spend a week in a multistorey car park that wobbles—and she has always wanted to. “We’ll have to go on them one day when you have mobility problems,” she said last week.
I laughed. “Do you think I’m going to have mobility problems?”
“Of course,” she said. “But I don’t mind. I don’t mind because I’ve always wanted to go on a cruise.”
It is now spring 2017. I have had MS for three years. How am I doing? I tell myself that I am doing well.
Talking to my dad recently, I said that I had discovered a great secret—one that I didn’t really know what to do with. We were driving to a blood test, a monthly affair to monitor my ongoing reaction to Lemtrada. Although my dad lives hours away in Wiltshire, although he hates Brighton so very much, he insists on taking me to my appointments at a hospital that is only about forty minutes from my house. It is a ritual that I love: a chance to catch up on things, and perhaps a chance for Dad to monitor me for any signs of MS personality. Although I know that the clumsiness of his initial warning has become something of a wound to him, I, in turn, worry that he was more right at the time than he knew. I am grateful that we have such a close relationship that we can be so clumsy with each other.
“Where did you learn this secret?” Dad asked, taking his eyes off the road just long enough to miss our turn and trap us on a roundabout for a few hairy seconds.
“In hospital,” I said. “It’s not a discovery, I suppose. More of a realization. I’ve realized that it’s the job of a parent, the final job, the secret job, to die for their children.”
Dad said nothing, but his relaxed positioning in his seat, one hand on the wheel, seemed to stiffen.
“Not die in the sense of rescue them from a fire or throw yourself in front of a tram for them,” I said. “But you die, eventually, to show them that it is okay to die. It is the final thing you have to do.” I laughed, although none of this was particularly funny.
Dad thought about this as he drove. The road curved through trees, the petrol station that marks the perimeter of my hospital appeared, and I realized I did not want it to appear just yet. I wanted to keep this moment going a little longer.
“I guess,” Dad said, “that I see parenting as dying well, but also living well.”
Now I said nothing.
“Not living gratuitously, or luxuriously,” Dad said. “But living in a way that gives your kids a template they can follow or ignore but hopefully not be too embarrassed by.
“That said,” he added, “they’ll be embarrassed anyway.”
We came to a stop. Dad leaned over and popped the door for me, and I nodded and went into the hospital. I was on autopilot now, stopping briefly to sanitize my hands by the front doors and then heading inside.
All this time, I thought to myself, this has been the real mission, hasn’t it? To find a way to live well. I thought of Ben in Worcester with his kids and his family car. I thought of Brian and his ease with Leon. Find a way to live well. Gene found it. Have I?
And this: “To show your children it is okay to die.” In the days after that conversation, this phrase among all others will not go away. It feels so true, so unarguably true, that I am certain it must have come from outside of me. It must have slipped in from a favorite book, a favorite writer—it sounds kind of like Martin Amis? Helen Macdonald? Michael Paterniti?—or maybe a song, a lyric I once heard and then forgot to forget.
I spend a weekend looking through bookcases for anything that could have birthed it, and scouring quote sites online. I cannot find it.
Or rather, I have not found this thought expressed in exactly these words. In different words, however, it is absolutely everywhere. I see it in a remembered line from Gene’s humanist funeral on a rainy day in Golders Green, when we were all told, and we all believed, that there is no life without death. It is there in that line from Saul Bellow, so often quoted by Martin Amis, that says death is the dark backing a mirror needs if we are to see anything in it. It is there in the line from the Episcopalian funeral liturgy that reminds us that “in the midst of life we are in death.”
This sentiment is all around us, and buried within it a secret instruction: to face death and acknowledge its power, and to acknowledge the equal power of life.
Every month, after Dad drops me off at the hospital, I arrive in the neurology wing where my brother was once treated. When I first entered this wing, when Ben was ill, it seemed vast and terrifying. I got lost on my way to the drinks machine, to the car park, to the ward, on my way back from getting lost in the first place.
Now, though, in 2017, coming here is something I almost look forward to. Early spring feels like summer down on the wards, bright light coming in through the windows and making the halls and visiting rooms seem airy. I know many of the people I pass well enough to nod to them. The news from my tests, so far, has been tentatively good, and I am prepared, I tell myself, for the news from a forthcoming MRI to be considerably less good.
One thing has been missing, though. I noticed recently that, as I walk these halls to and from my blood tests, I still tend to think that I am somehow singular. When I pass other patients, I sometimes wonder what it is they are here for, but I never ponder the chance that they might have MS. I have cut myself off from this thought since the very beginning, since I first met Jennifer. And over the last few years my fear of meeting someone with MS has changed into something far more ridiculous and self-involved: I have started to think that I am the only person around here who has MS.
The corridor where I sit and wait for my blood test is one of the special places of my new world. I am always on my own down here. Dad may drive me, but I make him wait upstairs, and I would never bring Leon to a place like this, and I prefer to keep Sarah away as much as possible too. I like the growing expertise with which I find this place—two left turns, a long corridor, past the elevator banks which took me down to the ward where I had Lemtrada and then out across the sloping, creaking w
alkway between buildings and down, down, down the two flights of stairs. And then sunlight and a row of empty plastic seats opposite a small, wood-grain paneled door.
Except today the seats are not empty. They are filled with other people, and as I sit and listen to their chatting—some of them have brought a friend or a relative, others are merely nodding almost imperceptibly when something is said that they agree with—I realize that all of us, all of us in the corridor, have one thing in common.
And we are so different. We are all clearly at different stages, both of the disease itself and of our understanding of it. I think of the revelation I had in hospital, that I am too eager to look for guides. And yet somehow, even after I met Justine as she was finishing her own course of Lemtrada, I never looked for guides here, among the people who were exploring the same territory as me.
A memory returns as I settle in and wait for my tests. I am suddenly five or six, and packing a huge rucksack with the sorts of things a five- or six-year-old thinks they might need to pack in a rucksack. My mother helps me squeeze into the straps and then, as I teeter under the clanking weight of that pack, filled with blankets, toys, bottles, hand-drawn maps, she opens the front door and we head out for the day, out to the park beyond our house to climb a tall hill that has a funny little building at the top of it, bleached white stone surrounded by low railings. As we walk, I warn Mum that the climb is going to be dangerous and tricky. She will probably need to be rescued several times. I hope I am up to it.
And the climb, of course, lasts all of about twelve seconds. Maybe longer when you throw in a little showboating and drama, maybe a whole extra minute once I discover a patch of quicksand, which we both have to get stuck in, one after the other, before finding vines at the last second to pull us clear. A polite, even democratic kind of adventure, all told, everybody getting their moment to shine.
The Inward Empire Page 26