The Inward Empire

by Christian Donlan

  Thursday

  Lemtrada is a clock. Each droplet is a unit of time, suspended and then released by the hidden machinery of the pump. Drip. Drip. Drip. I had a slight adventure this morning, or rather Lemtrada did, when a new sister tried to plug in the latest batch, hidden under its black hood, and the crow started to leak. The liquid looked slightly thicker than water, and somehow brighter, as if lit from within. “That was very bad,” said the sister as she rushed to wash her hands, but it was only five mil or so. Doctors were called, and doctors were unbothered. Five mil is neither here nor there. I almost expected scorch marks where it had hit the floor. Nothing!

  Even in the midst of all this, it did not feel like real drama. The ward retained its measured pulse. Over by the window, Edward mutters, eyes closed. “Gentlemen,” he says. “Gentleman.” A cough. “Fair enough. Fair enough.”

  Day four of treatment? Today the rash will appear, I am told. Around lunchtime, maybe. The land will come up from the sea on my shoulders first, tiny islands, little lumps of angry red earth. Over time they will spread. They will join together. The full coastline will be revealed. I tell myself that I will understand something at this point, that a coherent way of seeing things is connected to that rising landscape.

  Instead, departures. Rumors turn to news. Someone has died. I suspect it is the man in the single room across the hall, a shadowy presence, revered by us in some powerful way because of the depths of his illness. Not that we had a chart to go by—just the fact that he had the single room, which seemed significant. He rallied before he went, the nurses say. They often do, the nurses say, watching us, despite themselves, for signs of unwelcome energy.

  Death is treated very beautifully here. Death matters. Voices dip. The shock is real. And the nurses respond with stories. Cath, a health-care assistant, remembers the minute her mum died—3:03. She was knitting booties for Cath’s unborn baby. Her mum was fifty-four. Now Cath is fifty-four.

  And Phil goes home today. I will miss him, despite his occasional scariness. He fought the ward, which feels worthwhile, even if the ward itself does not deserve fighting. Besides, Phil has been a chance—there are so many of these—to see the wonder of the NHS in action. Everybody who has passed by, health-care assistants through to doctors, has offered to fix Phil’s phone case, which he sat on a few days back in a fit, but only of pique. Everyone believes they can fix his phone case, even though Phil’s own attempt to fix it has already rendered it permanently unfixable. He fought his own belongings as well as the ward.

  Phil is setting off for the ceiling again, prior to going home. “How long have I been here?” he asks. Today he thinks he has been here a week. His children are packing his things. His children are wonderful, small like Phil and blindingly fast and coordinated in their movements. Everything they do is done with great delicacy.

  I hope Phil will be okay. Beyond his children, he also has the classic Brighton Jazz Friend helping out—I think you are assigned one once you hit fifty. Specs, sideburns, pork-pie hat, and short-sleeve shirt, regardless of the season. A barrel-shaped man born to tap a hand on the steering wheel and mutter, wryly, about craft beer.

  Edward surveys the hubbub of Phil’s departure quietly, but a complex feedback loop kicks in once Phil is gone. I’m not sure how complex it truly is, to be honest, but it’s certainly stressful. My pump runs down every now and then, and starts pinging to alert a nurse. The pinging sets Edward off: he struggles from bed to sort it out for me. I have to sit up to try and steady him, untangling myself from my various tubes as I go—and in steadying Edward from across the room, I only ever seem to beckon him over with increased urgency. He smiles to tell me everything is okay. He is coming to help! I grimace, because he is going to fall and it is my fault. The nurse comes in, and then it is a decision about whether to sit Edward down first or silence my pump.

  No fat on Edward, and not in a bad way. He looks so healthy. Still ready for anything. After a week in hospital I can’t help but see him in biological terms as he pads toward me. What a metabolism. A machine that takes care of itself too well.

  Phil has become Harold, a new arrival on the ward. Minutes after they turn up, Harold and his wife are in the tent—the tent that is formed by the curtains around the bed being pulled, the tent that only appears when the doctor is visiting and people are learning difficult things.

  After a short while, the doctor disappears, and Harold starts to set Edward off. Neurology has rendered Edward a programmatic element in some kind of simulation. He responds predictably to inputs, and now there are new inputs. When Harold rolls over and his bed squeaks, Edward rises to help him. And then Harold tries to get him to calm down, which only makes Edward more eager to help, which only makes Harold’s bed squeak all the louder.

  My own doctors arrive. Dr. Koenig, my MS specialist, and Dr. Quill, who I have not seen for a year, and who has not changed a bit. I find myself smoothing down the bed when Quill appears, organizing my books into a pile to show him how neat and tidy I am. My heart lifts to see him, and then falls a bit when he says, “Because of this, the only downside is I probably won’t see you very much anymore.” He is being positive. Is he being too positive? I am not thinking about outcomes. I am not even ready to think about endings.

  I nod to Dr. Koenig as she leaves, and I think again of what she said when we first met: “You will never be alone in this.”

  You will never be alone in this. When I read in the afternoons, Leon is present as my bookmark. I prop her up in the last pages, so I am always reading toward her, as she glowers at me from a lovely, out-of-focus photo.

  In truth, she is always present anyway. A change has occurred over the last few months, and only now am I fully aware of it.

  When Leon was born, Sarah and I stared at her face for hours on end, rocking her to sleep, watching her wake, checking her for signs of tiredness or hunger or the first fluttering of social emotions. These were all excuses, though: we would have stared at her regardless, and as we stared we often ended up seeing something familiar. We often ended up seeing the faces of people we knew.

  Leon, it was agreed, looked like me, and me alone. And there is a reason for this, sadly: I gather that young babies look like their father so their father doesn’t run off immediately and start another family. But the problem with this was that we also agreed that Leon looked like Sarah, and Sarah alone. Except when she looked like my dad, or my mum. Or Janey. Or Sarah’s mum. And maybe she didn’t just look like these people?

  For a while, in the absence of Leon’s own personality, we were projecting other people’s personalities on to her. But this slowly changed. For the last few months, I realize I have been projecting her face on to other people.

  A friend of Sarah’s has face blindness, which turns out to be a neurological problem, prosopagnosia. She cannot identify people she knows from their features; it is all just a jumble of fleshy type to her, like swearing as it is rendered in a comic strip. (It is not uncommon, incidentally; Oliver Sacks had it.) With Leon, I have had almost the opposite problem over the last few months—I will start to see her in the faces of people I pass on the street, or even on objects if the mood grabs me. Every trip into town will yield a few pangs from the crowds, and I still get a bit misty about Henry, the vacuum cleaner with eyes and a nose and a mouth—because they are so obviously her eyes, her nose, and her mouth.

  I should have been untangling what it is about these specific people and objects that make me think of Leon. It’s a chance to learn what I most strongly identify in her. But I am left, instead, wading through the clogging depths of emotion I suddenly feel for these strangers and trinkets, the sudden spike of longing to be back with her.

  It is all education, with Leon. I am learning about her now, with no thoughts to the way that she is different from the rest of us or similar to the rest of us. She is reaching out to me, crossing the linguistic gap with each new sentence that expresses an urge, a desire, or, increasingly frequently, a viewpoint on
the world. We will be reading a book about animals and see—this is in Richard Scarry—a pig family riding in a car made of corn, all while they are eating corn too. She will laugh so hard that I worry she needs resuscitating, and then she will look at me and frown. “This is funny,” she says. “We should laugh.”

  We should laugh, Leon. Leon, who thinks cars made of corn are funny. Leon, who has such a weird 1970s taste in food, drawn to cocktail olives, to salmon—to vol-au-vents, no doubt, if I knew how to make the wretched things. Leon, whose memory is terrifying, who can floor me, as I put on a shirt, with a list of the recent and not-so-recent occasions I wore that shirt and what we got up to. Leon, the only Donlan who has ever invented a dance, who invents dances, in fact, whenever a new song plays on the radio, standing, listening for a second before translating the music into movement, rolling the arms as if winding a bobbin, making chattering mouths from her hands, bending at the knees and then jumping like a frog.

  In the evening, which is cool, I sign a waiver and promise solemnly to the sister on the desk that I will not fall over, and then I go upstairs in the freight elevator that takes me from the ward to the wider world of the hospital. I am wearing a dressing gown and pajamas and the two-tone shoes I brought with me a week ago. I feel dapper and crazy, unready for human company. I am listing to the left madly, as I am not used to walking. I don’t fall over, though, and when I reach a phone signal I can feel the cool air of the evening on my face for the first time in an age. I call Sarah to hear about Leon, but all I can do is talk: about the breeze, the listing, the promise I made not to fall over.

  She asks about Edward. I tell her about Edward. And I think: I would love to have met him. There should be more to this sentence, I am sure, but I cannot untangle it.

  Friday

  Muttering retreats. In the cool light that fills the ward very briefly every morning, I see Edward, already up, already resting. It is before six and the morning observations: just the two of us and the bustle of nurses outside.

  I watch his face. It is a delicate and cleanly sculpted face. I gather he was once a scientist, but he has the face, as the cliché goes, of a poet, easy and almost regal, with that aristocratic poise that tilts breeding toward battiness.

  Actually, I think that Edward looks more like a poet than most poets do. Frowning over his book. The work of words churning somewhere within him. He certainly looks more like a poet than T. S. Eliot, whose face and laminated side-parting put him firmly inside that bank he worked for. Edward looks like he might work inside the head of a dandelion somewhere, his fine white hair a grasping of loose filaments as he tilts back and forth through the clear summer air.

  Tethered to alarms, always stuttering to rise, a body that wakes each day filled with hurry, with the urge to take over, to restore order. And maybe. And maybe there is some order for him to restore after all. Maybe he has a message that he can impart.

  Edward, I suddenly understand in the fleeting peace of dawn, is the last of my guides. He has traveled more fully into the wilderness of neurology, of illness, than anyone else I have met—certainly far, far deeper than I have gone myself. He has seen things in there. And this week he has been telling me about it. Or rather, I have been listening, with an increasing sense that I have been tuning into a signal that, while not meant for me, still has a clear relevance to me.

  I think he has explained everything.

  In a hospital ward like this, you get a chance to see what remains once the hollowing has done its work. And it’s the Pavlovian stuff that remains. The rituals that have become hardened, that have become the stuff of neurons themselves. To fire together is to wire together: behavior eventually becomes matter. Edward’s desire to take control, to make us safe. Phil’s desire to keep everyone entertained. A lifetime of programming is building up. What will be left when the conscious engine starts to spin down? It makes me wonder: what is my programming? What will be left of me?

  Why did my thoughts turn to exploration so instantly when I became sick? And how have my thoughts shifted as my illness has advanced? I reached for exploration at first because I thought this was about being lost. I was deep into proprioception with its tricks, its shifting of the world an inch to the left. I recast myself as an explorer as a way of orienting myself—performing in metaphor that which the brain could no longer do for me automatically and invisibly. The further I settled into the role, the more I understood that what I was starting to focus on was actually a means of cataloging what I was losing. I mapped my life to fix in place what felt at times like a vanishing world.

  With Edward leading the way, dragging me behind his walker, scattering nurses as he tracks down every ringing phone, every trilling machine, every unmanned desk and flickering bulb, I see that the thing to focus on is not what you lose but what you will be left with when everything else is gone.

  Ben, Gene, Quill, Jennifer. Sarah. Leon. I was never an explorer. Explorers set out on their own. I was always looking for a guide, someone to follow. And it seems that I have always been this way, that this is the core of me, the part that has never changed. The middle child in a family of five children, loving the sheer rabble of us because it meant I never had to decide on anything, never had to create anything from nothing, never had to be the first to make a mistake, never had to pick a direction and set out to face something unprecedented.

  But this? This is unprecedented. MS is unprecedented. For me and for everyone who gets it. You have to become the only expert. You have to become the only one. In some crucial way, you have to be alone with this.

  That will be the last piece to go, I realize. All that will remain when the rest of me is gone is my endless need for help, my desire to get someone else to do the difficult stuff for me, so I can watch, record, follow—and occasionally lose myself in indulgences.

  And more: in my endless attempt to understand all this in the context of other people, have I sidelined the people who matter the most?

  The rash never arrives while I am in hospital. In the confusion of neurological disease, you sometimes get to the clear truth. As catastrophe pares you back, it is revealing something even as it destroys what surrounds it. You see what is left of people when they lose almost everything. Ben had anger. Gene had stoicism and hope, a sheer love of life. Edward has an innate need to help. Phil, a laudable kind of individualism. I think I have a deep-rooted need to follow, to be led to safety, and I don’t want that to be my legacy. I don’t want Leon to have a father who is still looking around for his own father.

  Is this a big thing or a little thing? An air bubble, this is a little thing. This is surely the littlest thing.

  One moment of drama before I leave. On my last day on the ward, my pump starts to make a new kind of beeping noise. Not a gentle nudging beep, like I have heard before. Something a little more shrill: an alarm. The line has been fouled up, plastic flex bent out of shape. Annie, who can make wrapping a cannula for the shower a thing of precision and beauty, bustles over and resets the machine and checks the flex. She announces there is an air bubble in the line. She moves forward down the flex toward the point where it joins my cannula at my left wrist. “There,” she says, pointing to a little valve set just before the cannula. “I’ll get it out there.” And then she bustles off to finish changing someone’s bed.

  I am calm. An air bubble, after all, is just a little thing. Dad, who is sitting with me, starts to panic. At least, I feel like he might be panicking. Messed up on steroids and woozy with antihistamines, I cannot completely comprehend his mental state, but I get a glimpse of it in the way that Sarah, who is also with us, starts to distract him, asking him about his youth in California, and his aunt, a favorite of mine who lived to be one hundred and two, kept alive by the stock market, which she monitored from her bed.

  Annie comes back with a syringe just as the bubble is reaching the little valve. She does something with the needle and the valve that I cannot make out. It looks a bit like knitting, like casting off. “All done
,” she says, and bustles away again. I understand the rhythm of the ward by now, and so I know that she will be going home in half an hour. What I do not understand in the moment is that she has saved me from something serious, possibly fatal, and that she has done this with such a sense of calm, such a quiet, almost off-hand kind of competence, that it will be very unlikely if she thinks about it this evening or ever again.

  Like Phil, I realize I don’t want to go home. As my final infusion ends, as the crow departs for the final time, I hear Trump intruding from a TV in the nurse’s station. Minutes later, hobbling around the hospital shop, listing to the left, I will resist the urge to buy a paper. I don’t want to engage with global politics, certainly, but it goes deeper. I also don’t want to engage with human currency, with pennies and debit cards and bank balances.

  It is a struggle for me to say good-bye, but the nurses are used to it. They understand what they foster in their patients, and why it is so hard to put it into words. The car journey, the return home, and then Leon is where I expect to find her, in the explorer’s tent, under turquoise light, and more beautiful and bright than ever. I have so much to tell her about where I’ve been. But it will be an age until she understands, so for now I hold her and she grins into my shirt and clings on tightly.

  The Art of Diagnosis

  I wonder sometimes what the last few years of my life have really been about. Have they been about multiple sclerosis itself, or about the paranoia and confusion that follow in its wake? Have they been about parenthood? Have they been, and this is a gloomy thought, about the slow, steady turn toward middle age?

  Ultimately, I think a lot of time has been spent dealing with the idea of diagnosis: with the realization that a diagnosis was looming, and with my attempts to steady myself—and then re-steady myself—once it had arrived. MS is wrapped up in this, but so are my ghost symptoms, my many wrong turns. So too, and in a much happier way, is parenthood: someone was missing, and she is now here.