Somebody I Used to Know Page 3

  ‘W–we’ve had a few glitches, but most of the data has been easy to transfer.’

  An hour later, the meeting finishes and people file from the room. I linger, picking up my paperwork from the desk, and then it comes to me, the word I’d been so desperately searching for. I look up quickly, as if other people might have spotted the moment of recognition on my face, at the same time as I swallow down the shame, because the word I had been so desperately racking my brain for was something tiny, something simple. It was ‘and’.

  An appointment for a SPECT scan arrives in April 2014. It’s a 3D scan of my brain, which the neurologist says may prove more helpful than the MRI.

  ‘We’re going to inject this dye into your vein and that way we can monitor how it travels through your brain,’ the radiologist says.

  I lie back in a dimly lit room, alone in my thoughts as the dye makes its way around my brain, although I don’t feel a thing. The nurse tells me that I can sleep as I lie here, but I am determined to stay awake and alert, as if somehow my brain and I can trick the system into finding it anything but sluggish. Deep inside I know, though, this type of camera never lies; the dye will seep through, finding the roadblock in my brain that is causing all this destruction. I feel again that helplessness I’m trying to get accustomed to, allowing the scans and tests to reveal more about my body than I’m able to articulate, but there’s an image that keeps coming back to me of driving on a motorway at speed, the warning lights above the carriageway lighting up to warn of worsening conditions up ahead, going down through the gears, 60, 40, 20 mph, until the brake lights in front bring you to a halt altogether. Is that what it’s like in my brain at the moment?

  A few days later I’m driving in my car, and suddenly I’m aware of the car behind me. It feels close, imposing. I’ve always despised tailgaters, considered them incompetent and bad drivers. My hands grip the steering wheel. Why is he making me feel so nervous when he is the problem? I blink, narrow my eyes as I feel the need to concentrate, hunch forward in my seat. I look up at the road, but that’s all I can do, simply look. What do I do next? Why won’t the next process come into my head? A horn blares angrily behind me. I glance into my rearview mirror and see headlights flashing, an exasperated face behind the wheel. I wince, though I’m not sure why. I know this road, I’ve been down this residential street countless times before, so why is something missing? I just need a moment to work out what to do. I need to turn right at the end of the road, but how? How do I turn right? My brain will only process one action at a time, yet I see signs, markings on the road. I know I need to move, but it’s all merging together, becoming a tangled mess in my mind. Another blast of the horn behind me. My hands grip the wheel tighter. I glance down at the dashboard and I understand why the car behind is flashing: the speedometer is wavering somewhere around 10 mph. How did that happen? Still the junction is approaching too quickly. I can’t think in time. Another beep. Flashing lights. I cringe. I turn left instead of right, away from my destination. The car behind me has gone, but my skin is tingling, panicked. My breath is short. I’m lost inside. I couldn’t process it quick enough. My brain and my body weren’t talking, I think.

  I pull over and lean over the steering wheel. I close my eyes, take deep breaths, but I don’t feel safe. Why couldn’t I turn right?

  I wait and wait at the side of the road. ‘You can do this,’ I say to myself inside my silver Suzuki Swift.

  The traffic zooms by, everyone else going about the everyday, rushing here and there on automatic; nothing has changed for them. But the metaphorical roadblock I’d been imagining days before is real now.

  Finally, I take a deep breath and turn the key in the ignition. ‘You’ve been driving all your life, Wendy,’ I tell myself.

  I flick the indicator right, check the dashboard to make sure it’s on, listen for the comforting click-click. I check my mirror, over my shoulder, everything exaggerated. Check once, check again, more like a learner than someone who has been driving for thirty-three years. I just want to be home. Slowly, I pull out on to the road, holding tight on to every nerve until I see my street approaching. I let out a sigh of relief as I pull the handbrake up to stop.

  A few days later I get into the car again. I manage to calm the heart beating wildly beneath my seat belt, taking a moment to familiarise myself with my surroundings; indicators, gears, handbrake, as if I’d never done this before. I’d always just jumped into my car without much thought. Hadn’t I been the woman who had driven all over the country, who found her way anywhere long before satnavs? The other day had been a blip. I set off along straight roads and feel my confidence return as the speedometer rises higher: 20, 30, 40. I turn left, straighten up, another left turn. No problem. I begin to relax and then there’s a right turn ahead; the speedometer dips, taking my confidence with it. I glance in the rearview mirror, look back at the road ahead, my feet not talking to my brain, the car over-revving, my hand fumbling with the gears. It’s happening again. Only one process can filter through at a time. There’s not enough time to think how to turn right. A different me clutches the wheel, hands clammy; it slips beneath my grasp.

  I made it home that day, and put my keys down in their usual place, in a red dish on the hall table by the stairs. They sat there, looking back at me whenever I passed.

  Useless, nonfunctional, incompetent, idle.

  The piece of paper Sarah has put on the table in front of us looks like it has a giant spider drawn on it in black biro. A giant spider with ‘Mum’ written on its belly, shaded lightly with yellow as if, perhaps, to lighten the subject. I stare at it for a moment, at the spindly legs and all the words in fat bubbles on the end of each one: living/housing, anxiety, interests, and finally, Sarah. I can see how much effort she’s put into this brainstorming diagram, an outline of all the thoughts she’s about to explain to me. But what I really want to do is to close my eyes, to turn the piece of paper over, to stay in the life I know rather than the new one sketched out on the table in front of us.

  ‘I’ve tried to put on to paper how I’m feeling …’ she starts. ‘I want you to know you can rely on me.’

  I don’t have to look up to know her face will be turned slightly away from mine until she is sure she’s on safe ground, and it’s in that moment that I switch from patient to mother. I paste a smile on to my face for her to see, suffuse my voice with that subtle encouraging inflection, the same one that, decades before, had urged each of my girls to try a new word out loud to me from a book at bedtime or spill secrets that were troubling them. And I listen, even though I don’t want to. I do it for her.

  ‘I think these are some of the things that we may need to think about if the diagnosis does turn out to be dementia …’ I hear the hesitation in her voice, and in turn try to disguise the fear in mine and listen as she talks me through the diagram, growing more confident as she does. She hovers over each of the little bubbles. I see she’s written stairs? and then crossed it out, and I think of my running shoes in the back of the wardrobe, the same ones I haven’t slipped my feet into for months.

  Her finger darts across the diagram. As it does, my gaze lingers on the word care, and something tightens deep inside. I’m not ready for this, and yet she needs to talk, she needs to explore all those what-ifs, and I need to listen. It’s what mums do. It’s a strange conversation, the past, present and future versions of ourselves colliding. Sarah shows me around her diagram proudly; she wants me to know she’s capable, that she can manage, that I – in turn – will be able to manage. The writing is neat, the diagram well drawn, and I think back for a second to other drawings she’d run out of school clutching, eager to show me, and I feel that same sense of pride at my daughter’s practical brain despite the subject matter.

  ‘OK,’ I say when she’s finished. ‘I’ll have a think about this and get back to you.’

  A flicker of hurt crosses her face, momentary, something only I would notice. She wants decisions, conclusions, worst-case sc
enarios addressed; it’ll make her feel better, more in control of what’s going on inside my head or what the doctors might find. But I can’t do it for her, I’m just not ready.

  ‘We don’t even know if there will be a dementia diagnosis,’ I say. ‘Some of the things you’ve written down are way in the future—’

  ‘But—’

  ‘It’s too soon to think about them now.’

  I don’t mean it to come out so abrupt. I try a different voice. ‘I just don’t want to talk about dementia any more until we have a diagnosis.’

  ‘OK, Mum,’ she soothes.

  The roles reversed again. We change the subject. She stops sending me links to dementia articles.

  A few days later another email lands in my inbox. My finger hovers over the mouse before I click ‘open’. If I do, am I colluding with this disease? Am I inviting it into my inbox, my home, my head? I’d wondered the same when I’d typed out my initial enquiry.

  ‘Thank you for contacting the Alzheimer’s Society …’ it starts. My heart is racing at the secret I’ve kept from the girls. I read the email quickly, as if it’s sent from an illicit lover, my eyes scanning for sweet nothings, my finger ready to click it closed if anyone appears by my side. And then I find it, an answer to my question: a dementia diagnosis would entitle me to a free bus pass. I lean in closer, read again.

  Footsteps in the hall make me snap the screen shut, Sarah waking up and walking in.

  The morning goes by and I’m still thinking of that bus pass. The first positive thing I’ve read. My brain in exchange for a bus pass. A ludicrous swap.

  If I close my eyes I can still see you, always with a paint roller in your hands, sleeves rolled up, the same white shirt splattered with years of paint, black jogging bottoms speckled with colours of rooms over the years; the sky-blue bathroom in Annesley Road, the deep-red feature wall at Dolben Court, every single sunshine-yellow kitchen. The Beatles’ White Album spinning on the record player, having to put down your brush and dry your hands on a rag to turn it over. The scissors always glided through the paper perfectly, quickly, effortlessly, every pattern matched, never too much wasted, each bubble smoothed out from the wall before the glue had time to set. You worked fast, singing while you hung wallpaper or painted walls; footsteps on the stairs, the girls running in and out to ask what time tea was ready, where a certain book or toy might be.

  I took your independence for granted then. I envy it now.

  First I switch the Beatles off, hearing the gentle whirring sound inside the hi-fi as the CD comes to a halt. It’s annoying having to keep stopping and starting to press play again anyway, I reason. I go back to the pasting table and take a deep breath: where was I? I’m decorating my home office, a busy pattern of tiny red roses running down ivy – it had reminded me of a bouquet of barbed wire in the shop. I try again, look from the roll of paper to the wall, but the pattern swims in front of my eyes, I can’t see the obvious place to cut and when I do, the scissors inch through, tearing jagged lines into the paper. I roll my eyes, start again, and again, and soon I’ve wasted half a roll of paper. Finally I get it on to the pasting table, trying to ignore the creases I’ve made in the paper. The paste splatters on the floor, and I trip as I carry it to the wall. But I’ve forgotten where the pattern matches, and the seam isn’t pushed up to the paper hung before it, so a thin line of magnolia goads me the whole way down the wall, huge bubbles caught underneath. I drop the brush on the floor at my feet in frustration, and tear the slimy paper from the wall. I go back to the pasting table and start again.

  I can do this. I’ve done it dozens of times before.

  But the hours have passed and outside the night is black, the clock creeping towards twelve. I’ll try again tomorrow.

  I hesitantly peer round the corner of the door into the home office the following morning, mug in hand; I swallow down the shame of the mess on the walls along with my Yorkshire tea. The wallpaper isn’t even straight: the bubbles of air trapped underneath distort the pattern. If I didn’t need to be at work, I’d scrape it all down now.

  I try again that night, and the next. Every piece that should sit snug and seamless is now accompanied by a streak of magnolia beneath. I know I used to look forward to papering around sockets, getting the paper to fit seamlessly. Now too much paper is snipped away, wildly overestimated, a mess.

  It’s nothing more than my ego that keeps me in that tiny room for three evenings, wasting more paper and paste, unable to understand the following morning why the pattern hangs skew-whiff. I’d done it to prove the doctors wrong, to rubbish what was in those letters, to prove to Sarah I didn’t need brainstorming diagrams, to show the neurologist that we weren’t looking at a decline. I was going to outwit any impending diagnosis; I was still capable. But in the end I was left with nothing but three evenings of continued failure. Proving nothing more to myself than my new inability. I switch off the light and close the door. I know I won’t try again.

  A few weeks later, I wake and sit on the edge of my bed, looking down at my feet. Where once there was pale green carpet, there is a crunch of yellow Post-it notes between my toes. The pile has grown thicker after another restless night of waking, turning, remembering something else I’ll need for the next day, my confidence at each thought surviving sleep fading with each dark hour that went by. I glance at my alarm clock: 4.50 a.m., the same time I’ve been waking for work for years, ready and out the door for the first bus at 5.35 a.m. I bend over and unpeel a few Post-its from under my heels; by the time I look up again, it is 5 a.m.; ten minutes lost, how did that happen? I need to move, but I can’t think what I do first. Dress? Eat? Shower? No, that doesn’t feel right. I look beyond the curtains, momentarily confused by the sleep still soft between my ears and the dark clouds outside. I glance at the clock again to check it’s definitely morning.

  After a while, I head to the bathroom, and it’s thirty minutes later by the time I’m dressed and downstairs. I switch breakfast TV on, a routine I know so well, but I stare at the clock on the screen, confused. It’s 5.30 a.m. – I should be at the bus stop by now, but I’ve only just poured a cup of tea. Time running through my fingers like sand, I grab my coat and bag and hurry from the house.

  I make the bus, but I’m hot and flustered. I sit in my usual seat on the top deck for the best view; at this time in the morning the bus is empty, so it’s all mine. There’s a still sky at the windows, the rest of the world is yet to wake; even the birds still sleep in the trees, and I’m retracing my steps, wondering where I lost time again today.

  At work I turn on my computer and the log-in screen flashes up. I stare at it for a second longer than I know I should, wondering what it’s asking from me. When I type in my details, the screen opens up and it takes me a few moments to make sense of it, the same desktop I’ve been greeted by for years feeling more like I’m seeing it for the first time.

  I’ve still managed to arrive at my desk an hour earlier than everyone else. I used to use the time in a deserted office to get ahead for the day, but now I pull the pile of sticky notes from my handbag and work through them one by one, screwing each one into a tiny ball when I’m done and burying it in the bottom of the wastepaper bin. There are days when the fog feels heavier than others. On those days when I open the roster system, the coloured squares that make perfect sense on any other day swim in front of my eyes, meaningless. On those days, I dread the knock on my office door, a head peering round the corner, or a body appearing beside my desk with a question. I know that there will be a blank written large across my face. I know that I’ll try to distract them from it, shuffling papers on my desk, making an excuse that I need to be somewhere else.

  Answering the phone on days like that has become more and more difficult. It had always been such a natural part of my job, my number almost a helpline to worried ward sisters, yet now I know instinctively that their fears are not assuaged by the hesitancy in my voice when I pick up their call. Instead of their concerns, othe
r more distracting thoughts are whirring round my brain: Why are they talking so fast? Can’t they speak more slowly to give me time to think? I ask again what the problem is, cringing inwardly at the slight sigh they let fall down the receiver, knowing it must appear to them that it’s someone else on the end of the line, not the person they’ve come to rely on. I have become a master of disguise, of buying time, and so I suggest they come into the office to discuss the problem, I tell them that it would be nice to see them, that it will be easier to show them in person, or I’ll visit them on the ward. A delaying tactic. Not a lie but a more convenient truth, because the phone, with its faceless voices, has become an enemy. Faceless voices don’t see the concentration on your face, they don’t know you’re searching the Rolodex in your mind for answers. Faceless voices get impatient, they bombard you with more questions, they are demanding, they unwittingly add to the confusion that reigns.

  Those days are becoming more and more frequent, the focus fading as the months pass, the lens softening from crystal clear to something just a little more blurred, which has become my new normal. Not that I’ve told anyone – not at work, anyway; instead I find more ways to cover up the problems, but there are times when I simply can’t camouflage the confusion. The meetings when I struggle to put a name to the person who is smiling at me across the table, a colleague I know I’ve met before, missing the conversation because I’m sifting through it for the mention of a name, or reading the notes she has in front of her for a clue. There’s the panic when people I’ve worked with for years walk into the room and a blank meets my mind, a space inside where their name usually fitted neatly and I see that flicker of doubt reflected in their own faces, which makes my heart race under my shirt. There was the sister I know so well who called me to visit her on the ward; her name and voice had meant nothing to me on the phone, and it was only when I arrived there that I realised we were friends.