I awake briefly to see a nurse squeezing the bag to force the last drops through. I awake again to see Sarah sitting next to me.
A nurse slides into view. “Yes,” she nods, unhooking the bag. “This is done.”
Tuesday
Something has changed.
I awake on the second day of treatment to find that this ward has its magical hour: five to six, when the light stains the ceilings a watery silver and the patients around me are briefly silent in sleep.
But the silence goes deeper. I have been awakened by my hands. This should be another dull certainty with MS, which gives me the first minute or so of every morning to prize my fingers out of clenched fists, to shake the arms and unpeel what feel like radioactive oven gloves—crackling with static that burns the fingers and advances all the way up the forearms.
But today? Nothing. I awake and my hands are lying flat by my sides. More: they are entirely quiet. No static. No tingling.
I wait, almost listening for the jabs and sparkles which I know must be coming. Nothing. I rub my fingers together and for the first time in a little over two years they feel cool and precise. The space they seem to occupy in my brain matches the space they occupy in the real world. I swear I can almost feel the whorls and counter-eddies, the vinyl grooves of my fingerprints, moving over one another.
I prop myself up on my elbows and sound out my other symptoms. Nothing there either. No hug gripping me in the ribs. No apple-bobbing as I move my head around only to feel my brain following it seconds later, turning sluggishly through water. But sometimes, I tell myself, this is the case anyway. Sometimes MS needs a while to get itself running properly at the start of a new day. Sometimes it even takes the morning off.
But never like this. The tingling fingers are my most constant reminder that I am different these days. They are never silent. They have not been silent for two years! Yet now they are.
I close my eyes and talk to myself, just under my breath. This is good news, I allow, but I am not going to run away with it. It is too soon for a reaction, for starters. It is psychosomatic, surely. Or it is the steroids. Of course it’s the steroids. Still, I will give myself this moment in which the world has seemed to tilt and level out. I will allow myself this idea: not that the treatment will work, because who can afford a thought like that? I will allow myself this idea that I may survive the treatment itself.
As I rub my new fingers together I close my eyes and let the hospital build itself around me in my imagination, glossy and bright, first flockings of day nurses and porters in the squeaking halls. I am trying to get used to being a part of this particular world. It no longer seems impossible that I am here, that any of this is happening.
A nurse appears for morning observations. I ask her name: Annie, a towering cockney with a bob. I ask about a shower, and she says, in her sing-song voice, “Let me just take care of this baby.” Not the pills, which are already swallowed: the baby is the cannula on my arm. She finds a bag to protect it from the water, and then, with wonderful unnecessary care, she tapes the bag tightly in place. “I always fold the tape over,” she tells me with pride. I understand. It’s so that I will have an easy tab to grasp when I remove it afterward. Such a beautiful piece of work, I almost feel bad taking it off when I have showered. But not as bad as I feel in the bathroom when I realize the only way to bathe with a cannula in your wrist, bag or no bag, is to perform a prolonged Hitler salute.
I am still not ready to contemplate the crow. Instead, over the course of today’s infusion, I try to turn this room of old men into people. The man in the far corner is Douglas, and he is not actually as old as I had first assumed. Disease has spun the dial on his aging, it has made his handsome face drawn, and it has turned down the volume on his voice, with which he politely asks to be moved in and out of his chair as the sunlight advances across the ceiling, as the ward warms up.
Next to me is Phil, a tiny man, but a huge presence. His wild white beard and his curly hair both bounce as he moves his head, and seem to suggest an innate jolliness, but I know by now that he seethes all night, muttering endlessly as he tries to get comfortable, an angry Santa. Upon waking, though, he is full of confused life. He feels it his duty to entertain everyone, flinging jokes and observations as the nurses come and go, attending to my infusion pump.
Opposite me and over by the open window is Edward, rangy and delicate. If Douglas is muted and Phil is sometimes mildly confused, Edward is present only in body. I assume stroke, until I overhear from the nurses that strokes were moved to County a decade back. We are something of a backwater here. Edward is in his sixties, I think, but only his early sixties, an aristocratic Indian man with glinting white hair. He seems completely empty at first, but the shell of past behavior remains and becomes visible over time: a donnish gentleness, elegant posture, long fingers holding the Telegraph as he squints at the cricket scores. He is full of agitation, always trying to rise, trying to sit up and push out of his chair and race off deeper into the ward.
Out of the four, I am the only “independent.” I am the only one who is allowed to get around on my own. As the steroids continue to rid me of any symptoms of MS, I start to feel lucky. Lucky in my youth, a cheery aberration on this ward. I struggle, really, to understand the pitying way that the others sometimes look at me. I wonder if the nurses think of me as MS, the way other nurses once thought of Sarah as polycystic ovaries. I remember that medical people do this, they lapse into this kind of protective shorthand.
The tingling in my left hand resurfaces quietly while Sarah is visiting in the afternoon. It is almost a relief: I can take good news, as long as it isn’t suspiciously good. While I talk to Sarah about cheery nothings, I watch Edward across the room, and I worry about my dad bumbling around in here, an extrovert let loose in a ward where introversion has been imposed. Trying to start a conversation with Phil would be dangerous enough—and he is probably the best option.
An early ritual emerges. Every evening, once she has had time to return home, I send Sarah and Leon a text to say goodnight. Often it doesn’t go through—we are in the basement, after all, although everyone still speaks of going “up” to the ward, since hospitals mock and jumble physical space like nowhere else. I quite like it when the text doesn’t make it, to be honest. The sense of separation lends a sweet pang to thoughts of Sarah, and thoughts of Leon, who is going to sleep many miles away. I can see her so clearly in her absence, sleeping, as ever, with a fat hand tucked politely under her chin.
Remember this. Remember that life is moments, that MS is a disease of the moments, and it says, in its swiping carelessness, that the moments matter. The silver moment on the ward where I awoke to silent fingers. The moment yesterday—almost forgotten—when a nurse woke me to say that Christ is her savior and that my name makes her happy and will continue to even if I don’t believe in him. Further back: the moment in the tent under turquoise light. Much further back: the moment when Leon first took my head in her hands and pulled me in for a kiss that she didn’t yet know how to deliver, and she just hovered there, her mouth forming a smile, her breath on my cheek.
Wednesday
I get excited when a visiting neurologist asks Edward to read aloud from one of the books that line his window ledge, occasionally tumbling out into a stretch of garden when a nurse bustles past with an obs machine, which monitors vital signs. It feels like the whole room leans forward to listen. I instinctively think: Wordsworth! And then: Matthew Arnold? It would be hard to handle Arnold in here, the cauterizing shock of his bluntness, that brutal clarity of thought silencing the warm muttering baseline of a place like this. T. S. Eliot would be too perfect, of course, but in the end I hear nothing much anyway. Edward’s mumbling becomes a little more organized, falling into the sad rhythms of scanned text. This is the most basic act of reading: he can only glance off the words. Nobody connects. The neurologist nods and notes and moves on.
And I am left thinking—a kind of thinking, smug and specula
tive, that I recently suspected was gone for good. I think: Eliot really is perfect for hospitals, isn’t he? And not just because of his etherized patients, his heavy limbs on heavy tables. He has that pacing rhythm that is perfect for the steady drift of time on a ward. His slow-tumbling associations are ideal for the sad thermals that thought must ride in the neurology ward in particular.
Then there’s this:
Who is the third who walks always beside you?
When I count, there are only you and I together
But when I look ahead up the white road
There is always another one walking beside you…
I have never felt the need to understand The Waste Land, but years ago I knew the urge to understand this section. It led me to something called the Third Man Factor, which holds that an unseen presence is sometimes sensed in times of high adventure and extreme danger. Shackleton felt it on the glaciers of South Georgia, heading deeper into the ice. I do not believe it is a religious phenomenon. It is a regular feature among godless thrills, mountaineering stories, among any stories of survival.
And it fits so beautifully with neurology, with the quirks and feints and twists of proprioception. It fits here too, with the pump and the black crow of the Lemtrada bag tricking me into the idea of a presence lurking between Phil and me.
I think of a woman I once saw leaving the neurology department when I arrived early for an appointment. The first person I ever suspected was a fellow MS patient. I call her the Bird Lady, because of the same staggering walk on long legs, a taut, ruined grace to her. Days later I saw her again in town. I was rushing to work, and she was standing in a doorway, cane tucked under her arm and a camera raised to her face, snapping a picture of something that, passing the same spot again on my way home, I could not make out. Despite my cowardice regarding other people with MS, I was filled upon seeing her with a desire to make contact, a desire to thank her. To say to her that if she could keep going, if she could retain an interest in the world, so could I. I wonder now: has the Bird Lady had the chance to sit beneath this crow?
None of this is what I expected. I went into this expecting a communion with the worst of the disease. Well, a persistent drugged nausea, at least, or the blinding winces of MS headaches, lighting up the skull like a shower of meteors haphazardly streaking the night sky. Instead, it’s been the opposite. The steroids have brought me back to my old life of oblivious healthiness, returned me to a place where the connections between things are easy to find, so taut and singing that they seem almost visible. I sense my own idiotic privilege in a place like this: how easy it is to be a good patient when you are already feeling well.
I sense, more, that truly I have yet to know what it is to not feel well. The jaunty obs machine is wheeled around every thirty minutes as the days begin to blur, and the fourth day—the third day of treatment?—starts to unseparate from the fifth, perhaps. This machine, blue and riding on many wheels, is the happiest machine in the world. It announces itself with the opening notes of The Magic Roundabout when it is switched on. It gives a brief sailor’s hornpipe when it’s done. And once the cuff and the finger clip have been removed, the news, for me, is always good. Blood sugar a bit high, but that just means the steroids are working. Heart rate and blood pressure remain textbook. Whatever happens, they never stop being textbook, even for an instant. A doctor, scanning my notes in a sudden midnight visit, seems almost angry at the consistency of it. He is suspicious, and so am I. I have come to hospital only to discover how obnoxiously healthy I almost am.
I am alone in that, in this ward, however. Douglas moves past, head bowed, pushed by nurses who clearly love him for his gentleness, the hint of humor he brings to his tiny shards of conversation. And Edward? I am becoming shamefully fascinated by Edward.
Edward’s anxious restlessness takes a predictable form. He is stirred from bed not randomly, but in response to specific stimuli: ringing telephones, the bleeping of unanswered alarms, of which there are many in a hospital ward. When the electricians were in to fix a light, Phil asked them to leave because they were annoying him. Edward, meanwhile, staggered from his chair and tried to help them with the wiring. There was work to be done, and he was certain he should be at the center of it. His battered mind has returned him to early middle age. Before disease. Before doubt. His illness seems to have picked a spot in the past when he was mobile and vivid and important, and now it is enforcing a cruel parody of all that.
Edward’s illness seems particularly vicious. Each day it becomes clearer that it is offering an inversion of him, of his tendency to lead, of what I presume was once his extrovert nature. In health, he may have been a bit like my dad, but more rarefied, a touch dreamier. I still see his youthful energy in his desire to respond to every trill, to involve himself and to oversee every hubbub on the ward. I underestimated him, I think, until I see him one afternoon using a walker, a pawn in a failed plot to use up some of that useless energy of his. With the walker, he is suddenly so fast, so astonishingly fast. Nurses need to slow him down, trailing after him as he races, head up, on some urgent, if indistinct, mission. He is dragging the walker one-handed behind him, but there is no mission. There is no destination.
Too much energy, and hence anxiety, as he feels there are things he should be doing, even when there are not. In life, he has looked after himself, which is probably a mistake. His body is ready for anything, but his mind has nothing to give it for the time being. “There is nothing for you to do,” says the doctor. It is meant to calm him.
Phil is driven by old programming too, I suspect. He tends to misbehave when nurses and doctors are present, almost out of a sense that it is expected of him. He is playing himself, working his way deeper into an old role with every joke. He is a little scary at times, but he can be very funny too. During my third infusion, he raises his bed to its highest point, using a switch that nobody else has managed to find. “Where are you going?” laughs the ward sister as he judders upward. He points at the ceiling. Higher. A stately height.
And me? I wonder if I am involuntarily broadcasting arrogance. Silent except when spoken to, at which point my politeness is still almost brutal—an industrial pleasantness that must fool nobody. When I ask questions I think they probably suggest a desire to cross over, to be more than just the patient I am. I am curious about medical things, but I suspect there is also a passive-aggressive element to my queries.
Maybe I am more like Phil than Edward. Phil’s jokes and come-ons show a lingering desire for control. He finds it hard to be at the mercy of people. So he places himself, in a comical sense, in charge of them. There is an imperious element to his jokey persona, and even to his occasional confused non sequiturs, a sense that it is a privilege for us to hear him speak. I love that. I admire that in a place like this.
I even listen in occasionally. I discover that nobody knows what is actually wrong with him. There is talk of sending him home. Beneath his faux dissatisfaction with his surroundings, he does not want to go home at all. “I have only been here for two beautiful weeks,” he says. He has been here for six.
Often I read. I have chosen carefully: books to deliver the sense of exploration I need when confined to this place. Jay Rayner eating his way around the world; a history of the search for exoplanets; Skyfaring, the memoir of an airline pilot. It infects everything again, reading, just like it did before I had MS. When I need the bathroom, I take my drug pump in with me, its alarm bleeping rhythmically because it has been unplugged. Exoplanets intrude: it is like taking Sputnik for a walk.
A nice thought. Not just Sputnik, the pioneer, circling the globe, childishly announcing nothing but its own sheer and bizarre presence. But also that my mind can still catch things and make connections, even inane connections like this. Reading is still worth the effort.
In some ways, I am worryingly well suited to the small thinking that hospital demands. The simple pleasure of finishing another chapter, of keeping my cannula dry and pondering the next ob
s result. Of remembering who has taken Edward where and what kind of hot drink Douglas prefers.
In other ways, however, an old way of thinking is returning, a roving, self-satisfied autopilot that moves from one topic to another and seeks to tie everything together. Ugly as it is, I worry I have missed it.
And even as books give me back my old world, I wonder about it. I was delighted upon meeting Sarah when I learned that she hated to read—although she has since developed a love for reading anything about boats. I have mindlessly read too much of my life away. It’s that Marcel Proust line I think about the most these days. You can live your life or you can dream it, he says, and if you live your life you will also dream it. Yes, Marcel, but if you only dream your life will you miss the living of it? I need more experience of living. When I get out, I hope I will not avoid life as thoroughly, as expertly, as I have in the past.
Another day is done. I do not know which day, but I could work it out if I had a pencil. It seems a hospital is like an airplane. That sense of being in a holding pattern, that sense of cooped-upness, of being sealed off from a world that suddenly seems very far away, far below. Today I read in Skyfaring about place lag, the sense that on planes we travel too far and cover too much distance for the lizard brain to truly make any order of it all. Hospitals have the back-to-front form of this. You seem to travel so long and so far that you can’t believe that you have not moved in the slightest, that the only journeying done has been internal.
Like an aircraft, there is a chance to reflect on what you have left behind, who you have become. Having a chair next to the bed reminds me of the Third Man Factor. I constantly feel that there is someone sitting there with me. They are pleasant but watchful. Is this proprioception, or is this fatherhood? When I lean back in bed at night and turn to the chair, I suddenly imagine Leon, grown-up, sitting quietly, watchfully. History in that posture. Years of talking to a father as he lies in bed.
The Inward Empire Page 23