Somebody I Used to Know Page 2

  I want to leave now. I want to go home and put on my work clothes and return to my office, not be stuck here as a patient at the mercy of consultants too busy to give me more than five minutes of their time. Life as we know it has little bearing in here; what we thought of as a future has no certainty as we wait, for a nurse, a doctor, a scan, a test. There’s a lot of time to think, to compare and contrast. At work you go about life looking forward to the weekend, wishing each Monday to Friday away; here there is nothing to do but watch and wait and think and worry, and wish back all those weeks that whizzed past, all those weeks of full fitness and a future stretched far ahead.

  I watch the nurses turn the woman in the bed opposite me and wonder if she has accepted her lot as easily as it appears, or if she’s just complying, waiting to be returned to the life she knows better but has unknowingly already kissed goodbye. I close my eyes and long for visiting time, when normal conversations can resume, when you can hear what’s going on in the outside world, where routine means independence and a life fully lived, although those visiting us don’t appreciate it, just like we forgot to. I see daughters stare at their mothers or fathers in beds before them, a shadow of the person who cradled them in their arms and wiped their tears when they cried, and I dread the day when my daughters might look at me like that. A student doctor arrives later that day and lingers longer over my notes; he looks down at me, asking how I’m feeling, not constrained by the strict regime enforced on his seniors. He has time to chat, to explain test results, to speculate over why no doctor has been able to confirm any diagnosis, and by the time he leaves my bed, I begin to feel more human again.

  Today, as a last resort, I am being sent for a scan of my heart.

  ‘Would you mind if a student carried out the procedure?’ I’m asked. ‘With the full supervision of a specialist, of course.’

  I don’t mind, and I’m pleased I agree, because as he moves the scanner up and down across my chest, he whispers his findings to his superior.

  ‘Hole in the heart. It’s quite common; it may have been the cause of the stroke,’ the doctor says. And so with that, they seem happy to have some kind of explanation. Now thoughts turn to discharging me, and I’m returned to my bed on the ward with a hole in my heart but happy to be heading home.

  Later that afternoon a physiotherapist appears at my bedside. They want to be sure that I will be able to manage at home with a left arm so slow and sluggish to receive signals from my brain. I’m taken to a mock-up kitchen off the ward, and it takes all my strength not to roll my eyes through the whole process of ‘making’ a cup of tea. Next the physio walks me up and down stairs while I cringe inside, and then I’m told that I’m ready to leave.

  ‘I’m sorry we’re still no clearer as to what caused the stroke,’ the doctor who hands me my discharge papers says. ‘But we’ve requested an outpatient’s appointment with a neurologist, so that might get to the bottom of things.’

  But it doesn’t matter to me that things aren’t adding up, and any problems I’d mentioned I’d been having with my memory seemed to have disappeared under a mound of other paperwork. I just want to leave, to return to my normal life, recover my certainty that everything is, in fact, OK.

  I’m not used to being off work, so the only way I cope is by being creative with my recovery. The rain pouring down outside inspires me to devise my own exercises to strengthen my weak left arm, so I grab an umbrella and practise putting it up and down several times a day. At first the catch inches up the metal so slowly, my arm refusing to obey orders from my brain, but as the days go by it gets higher and higher until click, it slots into place and I stand there, alone in my living room, underneath a fully opened umbrella, wondering when I might be well enough to be back in the office.

  The next two months at home drag. Each day I wonder how much more daytime television I can take before I risk exposing myself to another stroke. The Post-it note pad beside my bed sits unused, a reminder of my underactive brain. When I was in the office each day, I’d often wake up in the night, scrawl some reminder on a Post-it note and let it flutter down to the carpet as I went back to sleep, sure to feel it underfoot in the morning when I swung my legs over the side of the bed, unpeel it from the sole of my foot and instantly remember what I needed to do when I got to the office. But these days when I wake up and glance over the side of the bed, I’m met with nothing but the blankness of my pale green carpet. I used to curse the volume of Post-it notes scattered on the floor each morning, a symbol of the busy day ahead, and yet now how I long for just one single splash of pale yellow to tell me I still have a purpose.

  I know busy life is continuing: I’m just not a part of it. I miss the team camaraderie that used to fill my day. I miss the buzz and working to deadlines. I used to wonder what it would be like to be retired, to do all those things I never had time for, and yet now I lack the energy or the inclination. But I’ve noticed something else too: as the date of returning to work comes closer, I start to doubt myself in a way I never have before. What if I don’t know what I’m doing any more? The thought crosses my mind several times a day and I blink it away as if it never happened. Days pass and it’s there again, and other doubts join it each morning, as if they breed overnight in my subconscious mind. What if too much has changed? What if I can’t remember the system? What if I become the one lagging behind, holding up everyone else? I go back to my GP and tell him my fears, he reassures me that it’s perfectly normal.

  ‘Take another couple of weeks off to make sure you’re really ready,’ he says, and I’m surprised how willingly the sick certificate slots into my hand.

  2

  It is March 2013 – three months since the stroke – and I am back at work. Today is the first day, and as I re-familiarise myself with my desk, I look up and catch one of my colleagues watching me. He smiles but quickly looks away, and I turn back to my desk to start again, convinced he, too, is wondering if I can still do it. I turn on my computer, the screen blinks into life, and for a split second the desktop looks completely unfamiliar. I scan the various documents and files, looking for some point of reference and as the seconds tick by I feel my heart speed up in my chest. But there it is: the roster system. I double click, it opens up, and suddenly it all comes back to me. Of course I can do this.

  The days go by as they always did, and even though maybe I creak rather than leap back into action, my confidence gathers as the weeks pass. The things I do forget – names or numbers, places, people – well, that’s understandable. After all, I’ve been off for nearly three months, or at least that’s what everyone around me says, and I start to believe it myself. Almost.

  The neurology appointment comes through two months later, and I sit in front of the consultant trying to pinpoint the vagueness I’ve been feeling for months. What sense would it make to her if I explained that the pile of pale yellow Post-it notes scattered on the carpet had got thicker and thicker, as I woke numerous times in the night, desperate not to let a single thought slip through the net, remembering all I’d need to get through a day in the office.

  ‘My mind just doesn’t feel … sharp,’ is all I could offer, and the consultant nods and writes down some notes in front of me. She prods and pokes around with more questions, but my answers come back woolly and vague.

  ‘I’d like to refer you to a clinical psychologist,’ she says. ‘She’ll be able to carry out more in-depth memory tests.’

  I nod, a mixture of relief and concern that at last this is being given some attention. They run blood tests too, but as before, nothing shows up.

  A month later, the clinical psychologist, Jo, introduces herself to me, and from the other side of the desk hands me three words that I’ll need to remember during our session, and say to her once we’ve finished.

  ‘OK,’ I nod. It sounds simple enough.

  Just like the neurologist, she asks me to describe the clouded thoughts I’ve been experiencing, trying her best to pinpoint when it started, how lon
g it’s been going on, whether it comes in waves or it’s always there. I tell her about the ever-increasing pile of Post-it notes, in case it means anything to her; she nods as I say this and scribbles it down in her notes, and I feel it makes sense, as if it’s relevant somehow. At the end of the session she closes her notebook and folds her arms across her chest.

  ‘Now, can you tell me those three words I asked you to remember at the beginning of the session?’ she says.

  I stop, my eyes rolling up to the top of my head as if searching the archives above and yet failing to pull anything from them.

  ‘I …’ I shake my head. ‘I’m sorry.’

  She smiles. ‘It’s OK, don’t worry, we’ve been talking about lots of different things.’ She clears her throat. ‘You’re an intelligent, resourceful woman, Wendy, I can see that, and so I understand this confusion must be frustrating for you.’

  ‘Is there anything I should do to help myself?’ I say. ‘In the times when my mind feels particularly … foggy.’

  ‘Don’t panic,’ she says. ‘There may come times when you become disorientated, the fog will descend and your surroundings will be unfamiliar, but the most important thing to remember is not to panic, give the fog time to pass, let the world become clear again. And it will.’

  ‘OK,’ I say. ‘That makes sense.’

  ‘What I recommend is we meet again in twelve months and see how things are for you then,’ she says, her smile putting my mind at ease as she pulls a date from her diary. I get up to leave, still desperately trying to recall those three words as I cross her office, but as I go to close the door behind me, I notice that she’s reopened my file and is writing something down inside.

  As I make my way home, I go over the exercises I’ve just completed, like I’ve just left an exam and I’m trying to work out whether I’ve passed or not. Did I join up all the right dots, count the right shapes, draw the correct lines, and produce the right words? Did this brain I’ve known my whole life let me down?

  I’m sitting opposite Sarah while she holds a letter in her hand, a letter from Jo after our last meeting. I scan her face as her eyes do the same to the page, taking it all in, not missing a single line, the clinical-speak making more sense now she’s a few months further into her nursing training. I can tell just from watching her how far through the letter she is; she’s currently reading the bit where Jo has detailed how independent I am, how well I manage at home, how organised I am. But then she turns the page and I see her brow furrow and I remember the moment when my own did the same. It’s one line below a heading that says ‘Opinion’ in thick, bold type. She looks up and I catch her eye.

  ‘Dementia?’ she says.

  But that isn’t what it says. I know exactly what it says. I’ve burned it into my memory. It is possible that this is a profile of the early stages of a dementing process.

  Sarah puts the letter down. ‘But it can’t be that,’ she says. ‘You’re so fit and healthy. It doesn’t seem fair.’

  I know, I’ve been thinking the same thing since I tore open the envelope myself.

  I take a breath. ‘Exactly,’ I say. ‘I’m sure it’s nothing like that, but I suppose they have to cover every eventuality.’ But I can already see the worry that’s cast a spell over Sarah’s face, as if her eyes are windows to the exact same images that are swimming around in my own head when it comes to dementia patients: white-haired, old people in beds, unable to recognise their own children, or to remember their own names.

  ‘It could be a million other things,’ I say, putting the letter back in the envelope. Because that’s what I’ve told myself: the word was ‘possible’ and within it is so much room for doubt.

  A few weeks later, there’s another letter, this time from the neurologist. Both of my girls are here to read it: To be certain [of this representing an early dementia] we would need to demonstrate deteriorating cognition in six to twelve months’ time. If no change I would diagnose mild cognitive impairment, writes the neurologist. However, if there is a definite deterioration then the diagnosis would be dementia.

  The three of us sit quietly, and I look across the living room at my two girls, now grown women, though often still little girls in my eyes. That’s nothing to do with my memory or whatever it is that’s afflicting my brain, that’s the lens a mother always views her children through; no matter how old they get, or how tall they grow over us, the urge to protect them never dims. But I know these two faces as well as my own, and the telltale signs of worry that flash across them, the secret giveaways: the fleeting stare from the youngest that has always meant she’s frightened inside, but she’d never say, not even as a child. The hint of a frown and quiver in the voice of the eldest, who’s always been less able to hide her fears. So I don’t even blink for fear of missing a reaction, and there it is on both of them. I push down the guilt that reaches up from my gut.

  ‘There’s no point in worrying,’ I say breezily, standing up to make a cup of tea. ‘There’s nothing we can do but wait for the summer when they do more tests. What’s the point in worrying until we have something to worry about?’

  It feels as if my words are avoiding something, and as I leave the room it comes to me: fear.

  You never liked your girls to worry. Did it make you feel more vulnerable that there was only you to worry for them? You would never have said so; you kept your fears to yourself. I can still see you now in the ward, sitting up in the hospital gown that had been hastily slipped around your shoulders two hours previously, the lick of brown iodine still dyeing your flesh beneath it, and yet you told yourself you were well enough to make a phone call. You put on your best and bounciest voice; you dialled home to check everything was OK. That instinct to be Mum overpowering the last of the general anaesthetic still running through your veins.

  You hadn’t felt well that morning, but you’d gone to work anyway; you hated letting anyone down. The girls were at secondary school then, and you’d only allowed the stomach pain inside to bite once you’d seen them off in their freshly pressed navy uniforms. It was harder to hide it at work though, that tiny film of sweat settling on your brow. You sat behind the desk where you worked as a hospital receptionist, putting patients’ health before your own, telling yourself and anyone else who asked that you were fine. But as the day went by, the pain crept from your left-hand side to your face for all to see. It was almost 3 p.m., the end of the school day, by the time the registrar in casualty came to take a look at you. He quickly started talking about emergencies and operating theatres; he wouldn’t listen when you said you were fine, you just needed to be home by the time the girls left school. Your appendix wouldn’t wait that long. Even as the anaesthetist asked you to count backwards you were telling yourself that your friend lived nearby if there was an emergency. Missing the fact that you were the one in danger.

  You awoke, minus the inflamed appendix, and tried to move, wincing in pain. But then you thought of the girls and the guilt that they had no one but you made your heart ache in a way that overwhelmed the raw wound in your side. It took all your strength to roll out of bed, to shuffle down the corridor to the ward phone clutching the 10p pieces you’d been lucky enough to have in your purse. The relief when you heard their voices was matched only by the throbbing underneath your National Health gown, which hastened you back to bed. You lay there smiling. It was excitement, not fear, you heard in their voices, a sense of adventure and responsibility, of fending for themselves. But wasn’t that how you’d always brought them up? To manage alone, as you had to.

  All pain was removed from your face in preparation for their visit the following day. They chattered excitedly about how they’d managed without you and you nodded and smiled, grateful for friends who’d helped out. They were only eleven and fourteen, yet they wouldn’t leave your side before hearing for themselves from the consultant that you were getting better, that you’d soon be home, that when you told them you were OK you meant it. Perhaps there have always been giveaway clue
s of fear in your face too. Perhaps that’s why you understand their need to know everything now.

  I’ve been staring at the same computer screen for the last twenty minutes and it still makes little sense. I have tentatively tried tapping various keys and yet nothing’s happened, or at least not what I wanted to. I have two screens open, one with the old system that I know so well, the other the new system that we need to get to grips with. But something isn’t clicking. I might as well be staring at a foreign language. I close the screen, frustrated, tell myself I’ll tackle it again tomorrow, but I said the same yesterday. Instead I’ll do what I did last night, try again with the remote access I have at home, so no one sees the extra hours I’m putting in just to keep up. It has been six months since my appointment with Jo and the world is no clearer than it was then. Today we have a meeting about the new computer system for the rosters. It is my job to tell the managers and matrons how the plans are going for the rollout, and yet it remains a mystery to me. It’s something that at one time I would have got in an instant, but now I’m the one creating delays that shouldn’t exist.

  A few hours later I’m in the meeting room, sitting at a conference table, faces looking at me expectantly while I explain the new system and its benefits, despite the fact I’m still to fully comprehend them myself. I glance around the table at faces I know are familiar, and yet I can’t recall their names, and this little internal fear, this tiny seed of worries whittles away inside until I’m shuffling my paperwork, confused about where to start. It’s my turn to speak. I look up.

  ‘We expect to start rolling out the system in two months’ time …’ I pause, every eye upon me, but the word I need next is lost, and instead there is a blank in my mind where it should be. The silence hangs in the room and for a fraction of a second I’m sure I see the questions behind their eyes, wondering if I am fit for this job, why I can’t complete a simple sentence. I feel stupid then. Stupid, frustrated, confused, humiliated. It’s a moment that seems to last for ever. Perhaps it was only a second, but the word I need eludes me and so I look down at the paperwork for inspiration, starting somewhere else, hoping I’ve glanced over the heavy pause.