But if I believed that, I felt I had to confront the broader picture too. Now, I returned to Hyde once again, reading it across a period of several evenings as Leon sat in my lap and flicked the edges of the pages in my book, enjoying the sound and the sense of involvement, and the sudden gust of air the pages made.
Mr. Hyde is the most famous invention of anyone with a relapsing disease, and perhaps, when Stevenson first dreamed him up, he was not only thinking of the “hidden self” that was such a popular theory in repressed Victorian society. Perhaps he was also confronting the manner in which a disease that comes and goes plays a special kind of havoc with a person’s identity. All of that seemed captured in Dr. Jekyll and Mr. Hyde, but transformed, reworked, almost concealed. Stevenson wrote in vivid bursts and relapsed viciously—days and weeks in bed staring at the ceiling, or playing with his son-in-law’s tin soldiers on the rug, rumpled to look like a mythical landscape. These instances have the rhythm of Jekyll’s sudden transformations, although morality has crept in somewhere to complicate everything. Still, the tidal shift is visible, the ebbing process that takes Jekyll from apparently decent Victorian to stomping beast, from dishonest refinement to a kind of honest horror.
I wondered suddenly about my own back-and-forth relapses: how they change me. The symptoms, but also the things I alone was bringing to them, the way I was letting MS chip away at my patience while I replaced it with self-pity and bitterness. Is this the MS personality that Dad mentioned? Or is this just me?
I wouldn’t be the first neurological patient to feel that there are two people inside my head—and that I don’t like one of them. And it’s Leon who makes me worry about Hyde the most. My Hyde is a tricky one, quietly—and invisibly—trading places with me when the moment takes him. Late spring, the sun surprisingly harsh, I seemed to be all relapse. I was often too exhausted and twitchy to look after Leon properly on the days I had her by myself, the Saturdays and Sundays when Sarah had to take a weekend shift at work. Peppa Pig became a shameful accomplice in these moments: a way of giving in and just letting Leon watch television while I creaked and murmured on the sofa, sounding out one ache after another. I grew snappy with her, and I would rather lounge about than play.
But I still listened to her. I love Leon’s words. I have loved almost all of them, at every stage. She has made me see the power of simple words, and she has made me see that clumsiness and eloquence can exist in a single sentence, like the other day, when we were listening to the radio, and she suddenly turned, eyes wet with happy tears to say: “There is much music inside me.”
There are some words of hers I hate, however, and none more than the word she uses when I ask how she is feeling. She doesn’t say fine, or okay, or happy, grumpy, angry, sad. She says: Better. She says she is feeling better even if she hasn’t been ill. It is an answer that has management imprinted on it—an answer that pre-emptively counters a parent’s fretting and neuroses. It is an answer that tries to create a little space when love becomes worry and worry grows claustrophobic and bullying.
Let me take you into the worst of it. It is a sunny Saturday in May but the sun is oppressive and startling. Inside, it seems that the heating has been left on, but the radiators are cold when I touch them. I sense a churning through the floorboards, rising up through my legs and spine and settling behind my eyes. But the dishwasher is silent—I have checked—and the washing machine is not spinning. The house looks terrible, cups perched on bookcases, cat hair and grit sticking to my feet. Peppa Pig is on the television, of course, and Sarah is out at work.
It is the dangerous low point of the afternoon. I am clogged with pity and the start of a cold. It all seems so impossibly lengthy and arduous. Arms aching, legs aching, palms prickling and fingers tingling, I see my life with MS—my life as a failing parent, as an incomprehensible, moody idiot—reaching off into the distance like one of the endless sentences I am currently struggling with, each thought’s transition into words exhausting. I should do something. What would a good parent do? They would take their child out into the sun somewhere. I can imagine a park, a library, a pool of calm in the city. I can imagine making it that far.
I find Leon in the nursery, arranging dolls. “Let’s go out!” I say. She jumps up and starts to hop on the spot with sheer energy. Let’s get rid of some of that, I think, as I check there are diapers, spare clothes, snacks in a bag, as I track back to the porch to prime the stroller and brush out the crumbs.
Then I lose myself in fiddling with a loose screw on the stroller. It seems I fiddle with it for several minutes. When I emerge from this fixing trance, it strikes me that a longish time has passed. “Where are you, Leon?” I ask. I walk back into the living room.
She is not ready to go yet. She’s laying her summer jacket on the floor.
I check my phone. The bus is leaving soon. I haven’t got a ticket, so I fumble through the purchase. “We have to get going, darling,” I say, with an edge rising in my voice. She is still messing with her jacket, turning it inside out, stretching out the arms, smoothing it.
My PIN for the bus app is wrong. I fumble with it some more, typing it in again. My staticky hands are useless. Again. One last chance before I’m locked out. Five minutes until the bus comes, and then an hour’s wait for the next one.
I look up, ticket purchased. Why is the heating still on? Why is Leon still screwing around with her jacket, brushing it out on the floor, arranging it to some strange design when the bus is almost here? Why is she even thinking of wearing a jacket on a day like today?
Out of nowhere, I am furious. No build-up, I yell: “LEON, PUT THAT FUCKING JACKET ON.”
And I see it all unfold. She is caught in a movement as I yell at her, already committed. And the movement is beautiful. She is gripping the ends of the arms of the jacket with a dexterity and grace I did not know she possessed. She is flipping the jacket up and over her head so that somehow it arranges itself on her like a magic trick, arms in the right holes, sleeves sliding into place, jacket falling around her exactly as it should. This is what the smoothing out was for. She was priming the jacket for this piece of bright wonder.
And now that the moment is used up, the careful pre-planned cycle has fired, so she is able to register what I have said. Her proud smile wobbles, something inside her face, her resolve, that splinter of happy defiance that I now realize is the absolute core of my astonishing daughter, starts to shudder. And she cries and hides her face. She thought I would be proud of her, delighted at what a big clever girl she is becoming.
When Leon finally turns back to me, I am crying too. Terrible thing. The wordless trauma of being young and expecting order in all the important elements, and then seeing your mother or father crying. This impossible sight, this inversion, and yet here it is.
The truth is, my optimism has relapses.
In the books and the pamphlets they talk of a “drunk feeling” with MS, the sudden transition from being sober to being absolutely plowed, everything around you amusingly incoherent. And I definitely get that. I know what it’s like to walk down a street, finding each advertisement I pass more obliquely amusing than the last.
But I also get a consumed feeling. A strange state to be in, as if the conscious part of me—the me who is always busy talking to me about what is going on—has somehow slipped deeper inside and I am staring up at the world from the bottom of a dark red well. Suddenly I am subtly removed from things, witnessing my own movements with a certain professional distance.
LEON, PUT THAT FUCKING JACKET ON. I am not claiming that this took place in the consumed state. I wish it had. Look at it, though. Bare coherence. No punctuation can fix the ugliness of that sentence, the raggedness, the brutal curtness of it. The words are maybe a tenth of the toxic cargo that is being communicated. The doll, Poppy, face down against the skirting board again. Upside down, it is all upside down.
It reminds me of the terrible, inadequate men my mum accidentally filled some of our childhood with, my s
isters and me, when Dad had gone. A drunken gardener. An irritable military type who loved vampire movies. A man or two from here and there—and always, underneath the lame variables, the same man.
I don’t want to be that man. I worried about him a lot when Sarah was pregnant, in between worrying about the house and worrying about every other thing in the world, of course. I woke one night and my fears had organized themselves to form a neat sentence: I don’t want to be another adult who isn’t grown-up enough to have a child in their lives. And I see now, bad as MS is, gentle as I have it so far, that I cannot blame it for everything. If I fail with Leon, I will be the one failing. I don’t even think that MS would count as an accessory.
An accessory. The language of the courts. Your own parents go on trial the day your first child is born. With luck, you go on trial shortly afterward.
At least I can see it, I tell myself for days after I have shouted at Leon. At least I can see it. I don’t want my daughter raised by Hyde. I don’t want my daughter raised by a man who cannot see that Hyde is a part of him, and that he must control all parts of himself.
That summer I was starting to realize that while my MS could always get worse, my handling of it could not. I was manic and unpredictable at work and at home, wordless one minute and ranting about optimism the next. I was delighted to get to the end of each day without having upset myself, but I often neglected to notice how much I upset the people around me.
Something had to change. And then all of a sudden it did. I can still remember the moment.
It was the day I decided I was going blind.
And this, it so happened, was the day after I had been out to a costume party. A friend of mine always throws a big Halloween party, and we always dress up and attend. I took Leon to her first when she was a few months old. I have a photograph of her, tiny and dressed in a skeleton onesie, half asleep in the arms of a friend, done up as Ronald McDonald. That would have been Halloween 2013. Halloween 2014 was derailed by scheduling problems, so it was shunted to the summer of 2015. Sarah was tired that night and wanted to stay in with Leon. I was manic, so I went to the party, but I had to throw together a costume from stuff that I found in the kitchen at the last minute. No problem, though: I had a brilliant idea. All I needed was a cardboard tube, tinfoil to cover it in, and an elastic band to hold it in place around my head.
“You’re going as Phineas Gage,” Sarah observed as I collected my keys. It wasn’t a question, and I sensed something brittle behind the words. Then she shut the door on me and I wandered to the bus, a cardboard tamping iron leaning drunkenly out of my forehead. I was laughing to myself as I went, off for an evening of making everyone who knew me deeply uncomfortable.
I didn’t drink, because I was still unsure as to how Pimm’s meshed with my new medication. I got the bus home early in the end, slipping into bed next to Sarah and Leon, and then I awoke before everyone else the next morning. In the creamy dawn light of a perfect June day I noticed it was starting. Blindness.
I had been waiting to go blind—waiting not with panic, as I gather that the blindness you get with MS does not last, or at least not often. Waiting instead with a kind of quiet interest. What would it be like to be blind?
It was like this: when I opened my eyes I saw a gray spot, a shifting, agitated scribble written in soft pencil and dancing just off the center of my vision. I closed both eyes but it remained in place when I opened them again.
Calmly I reached for my phone and composed an email to an editor colleague. I may need a few days off work, I typed. I think I am going to be blind for a bit.
Such dangerous complacency. I think I am going to be blind for a bit. Maybe this is what it’s like sometimes, I told myself, to have MS in the early years of the twenty-first century. I wrote three or four emails, and I planned things. What to do about the house, about getting Leon to childcare, about the shopping, the bins, a present for a friend’s birthday. And then I went back to sleep.
The blindness did not arrive—the scribble had faded by midday, but by then I had broadcast my heroic ambivalence toward blindness loudly to Sarah and Leon.
I think sometimes that early MS is a sort of tasting menu of neurological disease. It is also a tasting menu of life, of all the experiences that can make up a life, or many lives. I sample so many things and then move on. The trick, though, is to engage—even with the awful stuff. To engage, to own it, to experience the fear and the horror and the feeling small and unfortunate. Even with the awful stuff, even as you hope, occasionally with genuine panic, that it will soon end. Had I engaged with this in any way? Or had I just made a grim theater of my competence?
“If I’m not blind, I should probably go to work,” I said to Sarah around lunchtime. I went hunting for my keys and then, when I came back, I saw that Sarah was crying. She was watching Leon play on the carpet, and she was sobbing, silently, with no intention of alerting me to it. This was not theater. It never is. She would have let me disappear off to work like this.
I sat beside her. She did not go out of her way to make room for me. I awkwardly put an arm around her. “It’s fine,” I said. “It didn’t happen.”
“How can you do all this?” she said. “How can you saunter from one catastrophe to the next? How can you walk around like you’re acing it? How can you quietly plan for blindness? How can you go to a party dressed like you’ve got a bar through your head and expect people to be delighted?”
“I’m dealing with it,” I said. “We’re dealing with it. I’m just deep inside it at the moment.”
“You’re not, though,” she said, eyes narrowed by tears. “You never are. You’re above it. You’re always somewhere above it all, floating around. You’re explaining it away, coping with it in some stupid fashion that nobody else understands, proving that it’s nothing to worry about, when it is. It is something to worry about.”
She explained to me what she had witnessed that morning. She explained that it is an affront to approach blindness with calm. You should acknowledge it as a terror, a thing that has ruined people’s lives.
And at the heart of my response to blindness, she detected a coping mechanism gone insidiously wrong: a means of denial that looks like clear-eyed acceptance and the processing of trauma.
“So would it have been better if I’d panicked?” I asked.
She didn’t answer me. Instead she looked away, and said: “This neurology jag you’re on. It started as a means of understanding disease.” I stared blankly at Leon on the carpet as she spoke. “But the more you’ve read, the more it’s become something else. It’s become a way of distancing yourself from the reality of this situation, and the reality is simple.
“You are not a doctor,” Sarah said. “You are a patient. You have a brain, and it is going wrong, and while that is exciting and inspiring, you need to confront the fact that it is also a disaster, to step away from the theory and see what is happening. And then we need to work out what kind of life we can lead now that this disaster is here.”
The question Sarah finally posed was not going to be easy to answer: what does our life look like now if we try to put MS in some kind of wider context?
We decided to find out, and instead of hunting for an immediate answer, for a handful of quiet months we simply lived very tentatively together, trying to tempt a sense of normality back to our lives, as if we were leaving food out each night for a cat that had just taken off one day.
It was wonderfully undramatic. We fixed stuff around the house. We bought Leon new clothes as she grew out of her old ones, and we decided which tiny trousers and T-shirts to pass on to other parents and which we could not be without.
In search of small things to focus on, I started to learn how to complete cryptic crosswords. A throwaway distraction, perhaps, but one that gave me vital moments of glinting victory every lunchtime at work, and would eventually stretch to fill an entire Sunday afternoon, Sarah and I pitching clues and solutions through the house, as I ploddingly moved
from solving the odd line here and there to attempting an entire grid.
I saw Jennifer, my MS nurse, more often than I had before, regular meetings in the windowless room with the model of the femur on the table between us as we picked over the concerns that intrude every so often into the life of someone who has MS but who also has the lingering suspicion that they are getting MS wrong. That was a big part of the problem, I discovered. I felt I was getting MS wrong. I would lurch back and forth between conflicting paranoias: that I had a much more severe form of the disease, or even a different disease entirely, or that I had no disease at all and was simply making trouble for everyone for no reason.
One day Jennifer said to me that MS is not like breaking an ankle. She said that the very nature of it requires a degree of interpretation, and at the beginning that can be overwhelming. She made it clear to me that I would come to understand it all, that I would get to a point where I could recognize the phantoms—the fears and compensations and overreactions—and also recognize the points at which the disease was genuinely advancing.
Language again: with Jennifer, more than anything, I was learning how to interrogate my illness, how to draw a new symptom into the light and give it context. I was now truly learning what she had told me in our first meeting: that I was the first and the only person to have this form of MS, because each form of MS is a one-off. I was learning to recognize my new self.
I had ranted about mindfulness at length before, but with Jennifer’s help, language revealed that, while the future with MS is frightening, for me it really does play most of its tricks in the absolute present. For me, MS is an attack on the moment itself, on my instantaneous processing of the moment. It is an adverbial disease, belonging to that same liminal, mediating area that adverbs operate within. Adverbs are an attempt to interrupt a thought or action as it is happening, and nuance the understanding of that thought or action in some way. This is where MS strikes, where it undermines: when I am trying to make a bed, or get a baby ready for her bath.
The Inward Empire Page 20