Somebody I Used to Know Page 6

  With that the papers are put to one side and we turn our attention to the cakes.

  ‘Aw, look how tiny they are,’ Gemma says.

  I pour the tea and we take tiny bites of lemon drizzle sponge, the sugar sweetening the rest of the afternoon, just like it was meant to.

  The upturned box of photographs is scattered across the ivory lace duvet. I pick one from the pile and turn it over in my hands; Sarah and Gemma, aged around six and three, chubby legs neatly fitted inside towelling shorts on a sandy beach. I smile as the moment comes back to me: our first holiday just the three of us, I-spy games on the journey and counting different coloured cars, favourite sweets to make the time go faster, brand-new boxes of wax crayons and bumper colouring books opened on the way. We’d arrived at our chalet on the Norfolk coast, dumped our bags and run straight to the sea, and this photograph was taken the first moment their feet sank into the sand. I could still hear their excited squeals as a far-too-cold sea ran up and tickled between their toes.

  Then something else washes over me, a sadness that has been growing inside me for weeks. Am I really going to forget all this? Will I, one day soon, clutch this photograph in my hands and not know the two happy faces that smile back? It doesn’t seem possible. I feel an urgency, staring hard at the photograph, determined to outwit my fading brain, to memorise every pixel of it; a big blue Norfolk sky, the pink flip-flops in Sarah’s hands I hadn’t noticed before, Gemma’s navy-and-red-striped shorts, other holidaymakers on the beach. A photograph where once I only saw the girls is now suddenly filled with tiny details. I will store it to memory. I won’t let it slip away. I turn the photograph over and write on the back: Sarah and Gemma. Norfolk holiday. Caister? 1987.

  I won’t forget.

  I pick another photograph from the pile, me sitting on top of Walla Crag in Keswick. It’s a moody day, the sun squeezing through just one or two gaps in the low-slung clouds, the darkness of Derwentwater below, and me looking out at the view laid before me – beautiful despite the weather – a striped Breton top and my red rucksack cutting through the gloom of the day. I shuffle to the edge of my bed and feel the springs relent. I clutch the photograph between two fingers and I stare at the view again, burning it to memory, telling myself that from here, in my cream and olive bedroom, I can still pretend I am there, feeling the whoosh of the wind in my ears, smelling the damp moss beneath my feet, hearing the emptiness of the silence. It’s all there, the memories that I now long to hold fast to, they haven’t left me yet. I can still conjure up the feelings that go hand in hand with them, the peace that the beauty of the place brings, the warmth wrapped inside my coat on a breezy day. Those are the feelings I need to clutch more tightly; the calm, the happiness. I’m determined that even when I can’t name the place, the feelings won’t desert me.

  I look around my spare room and feel a sudden desire to pin these photographs all over the blank walls, to create a space that I can wander into whenever the fog descends. I brush my hands through the pile of photographs, all the very best moments of my life captured on film, and I’m grateful for every time my finger pressed down on the shutter. I had no idea then just how much I would come to rely on these photographs, that I would develop a disease that would steal memories from me, that every day something more cherished than any of my possessions would be lost. That’s what Alzheimer’s does: it’s a thief in the night, stealing precious pictures from our lives while we sleep.

  I start from the beginning then, sifting through the photographs and quickly scribbling down whatever detail I can muster; names and places and dates, an insurance policy against memory loss. I write quickly, making the most of today’s active brain, reaching from one photograph to another, my arms aching, my mind tiring, but not daring to stop in case the momentum is lost. With each one I stare harder, fixing every detail deeper inside, alert for clues I may have missed before, my life whizzing past as the pile gets smaller.

  There is one photograph left, a view of the river from one of my favourite bridges in York. I scan every wave the water makes and find within it a whirlpool I’ve never noticed before, a clue to the life that dwells beneath the water’s surface, a tiny detail I’d missed when I’d been taking in the bigger picture with my lens. I make a mental note to search for it next time I pass the same spot on the bridge. Then I decide to swap a mental note for a written one. Just to be safe.

  The following day I’m wandering through York, the note crumpled inside my pocket. I go to the bridge and stand looking out at the same view that I’d captured in the photograph, and there it is, as promised, the water swirling just as I knew it would be, just how it had been in the photograph. I stand on the bridge staring down, a sense of achievement I can’t quite name bubbling beneath the surface. I know it is inevitable that dementia will steal these memories from me, that in the future I might not recognise the whirlpool in the picture, or the bridge, or even the town where the photo was taken, yet I am happy to know that nature will ensure these things survive, that the whirlpool keeps on whirling, that the sea keeps on lapping on sandy shores where we had holidays filled with love and laughter. Dementia won’t steal everything, even though it can feel that way now. Even though forgetting my daughters is my worst fear, nature will ensure that the tides rise, the sun sets, the brooks keep on babbling. I am heartened to understand that dementia is nothing more than a trick of my mind, and I can outwit it if I stare at my photographs hard enough, if I find the whirlpool that is still there – the tiny gem to be appreciated in all this.

  That day in York I buy all I need to create my memory room and I go home and string up dozens of photographs across the walls, securing each one with a brightly coloured miniature peg. I flick every one over as I do, and there they are, the prompts that I scribbled down yesterday – the whys, the whos, the wheres – there to help me for a time when I won’t remember.

  I finish and stand back to look at my work; colourful photos of Sarah and Gemma from all different times in their childhood stare back from one line, on another all the houses I’ve ever lived in, another is filled with photographs of some of my favourite views – the Lake District, the Dorset coast, Blackpool beach. I sit on the edge of the bed in front of them, feeling that same sense of calm and happiness. When the memories have emptied on the inside, they’ll still be here on the outside – a constant, a reminder, a feeling of happier times. Will it be next week, next month, next year? I don’t know. That thought alone stirs a fear inside, an urgency to remember everything while I still have the chance, but I calm the panic by focusing on one picture, the view from Walla Crag. I’m up there again, the wind whistling in my ears, the damp moss beneath my feet. The uncertain future can wait.

  4

  I know life wasn’t easy for you, I didn’t always acknowledge that at the time. There was always so much to do, so much to think about, lists to write, mouths to feed. There wasn’t always time to just sit and reflect in front of a steaming cup of tea. How many single mums ever remember to give themselves a pat on the back?

  The girls’ dad left when they were just seven and four. I know it was tough. I know life was lonely. I know you worked hard to hide these things from the girls, painting a smile on your face and being determined not to let it slip. I remember that even if you did a good job of hiding it from others by making a joke, too proud to let it slip, and never in front of the girls, life was difficult.

  There wasn’t much money to go round, so you always had to be organised. Getting ready for Christmas often meant selling little bits and bobs before you could find more to fill their stockings with. You didn’t feel hard done by or want pity; instead you enjoyed the challenge. There was the second-hand bike that you sanded down and repainted ready for Sarah’s excited squeals on 25 December. And the farmyard playset you made yourself while the girls slept, complete with a tinfoil pond stuck to the cardboard with love. Every year you stayed up on Christmas Eve long after the girls sank into dreams of Santa, and wrote out the ‘Christmas
Menu’ for the next day – right down to games you’d all play, the turkey and all the trimmings. Gemma and Sarah say now they never remember going without, but it took a lot of doing.

  You had to be creative with days out too. Most often it was a trip to the library for story time, where books were free and the rooms were warm. The girls, too, could escape to a far-off land of make-believe.

  I always got the sense you rather liked not having much money. It made life a challenge, made you have to think harder, be more organised. Two of the things you love the most. Which seems ironic now.

  There was nothing in life you couldn’t fix with a Mr Men book, you’d say. Whenever the girls had a problem you’d fish out the right one. Gemma was always so shy, so you’d read Little Miss Shy until the pages were worn with thumbprints, and the story bedded deep into her mind. When Sarah was worrying, out came Mr Worry. The world always looked a tad less scary afterwards. If only there had been a Mr Men book for you in those days.

  The hardest moments for you were letting them go to stay with their dad at weekends and holidays. Never a cross word or criticism raised – after all, he was their dad. But how the house seemed so empty and quiet when they’d gone, your heart ripped out and packed off in the suitcase with them. It was when they weren’t there that the worry hit hardest; you’d never been able to have a proper job after he left, as any work had to fit in with school. You’d slotted in as many cleaning jobs as you could, often recommended by word of mouth, which at least made it more bearable. But you knew you were worth more. Those jobs had served their purpose while the girls were tiny, but now they were getting older, both of them at school, there had to be something else out there.

  In those dark days you learned the art of distancing yourself from the problem by floating up and looking down on yourself, and asking if there was another way. I try to do the same now, but the answers aren’t coming like they did back then …

  I shuffle into my bedroom, sleep rattling inside, my head craving a soft pillow. I glance at the novel patiently waiting on my bedside table and quickly look away. It’s a reminder of how I might have once spent the last waking hours and minutes. Another evening, I tell myself, knowing the folded page hasn’t shifted in weeks. But my eyes fall on something else beside it – a Post-it note: Book dentist appointment. I sigh and roll my eyes, was it any surprise that I had forgotten all about it? Even the little notes I’ve been leaving myself for months are starting to fail me now – what good is a note to yourself if you forget to look for it? A scribble made in the night, or even the morning, is now often forgotten about by lunchtime, more often by the time I leave the house. I prop the note up next to the clock, determined tomorrow that I will remember to call the dental surgery.

  The following morning, I wake to a selection of other notes, I scoop them from the floor, flicking through them as I make my first cup of Yorkshire tea. As I do, I notice the pillbox by the kettle, yesterday’s tablets still sitting inside. Even remembering to take my medication is becoming a challenge, and the notes scrunched up inside my hand prove that they are not reminder enough. I sit down with my tea and pick up my iPad. Perhaps the answer is on here. I see an icon that says ‘reminder’ and type in 7 p.m., take tablets. It’s worth a try.

  I arrive home from work exhausted that evening, but when I hear the buzzer on my iPad I open it up. Take tablets, it says. I wander into the kitchen and swallow down the tablets with a glass of water. And it gets me thinking. I pull the calendar down from the wall and start to fill my iPad with important dates, times and reminders – doctor’s appointments, friends’ visits, a daily reminder to take my tablets, to put the rubbish bins out. I hesitate over 17 October, Sarah’s birthday, just a few weeks away. Surely I would never forget a date as important as that, but just in case I set a reminder for the evening of her birthday.

  As the day approaches, an alarm goes off on my iPad to remember to buy Sarah a card. I smile to myself and glance across at the kitchen worktop where the card lies waiting to be written in. A couple of days later, another reminder, this time to post it, but I see it already has the name and address written on it, a stamp duly in place in the top right-hand corner. I settle back with my cup of tea, a warm feeling inside with each sip, a happiness that my instincts had been right, that I hadn’t forgotten Sarah’s birthday, that love could and would outwit dementia every time. But then something inside goes cold, a worry starts to whittle away. I feel my eyebrows knit together into a question mark: would the card have been waiting to be posted if I hadn’t set the first alarm? But I remind myself that I never forget a birthday, it’s one of my things. I post the card that morning, while I remember.

  On 17 October I go to work like any other day, and I come home and set about making myself something to eat. I’m humming along to a tune on the radio when I hear a ping from my iPad. I glance up at the clock: 6.30 p.m., so not quite time for my tablets. Puzzled, I put down the utensils I’d been using and open up the iPad to see Sarah’s birthday as the reminder. My insides turn icy cold. It can’t be. There must be a mistake. I must have done something wrong. I would have always called her in the morning to wish her a happy birthday. I check the date on the calendar, abandon my meal and reach for the phone. I’m shaking as I dial Sarah’s number, as I hear the ringtone, her voice answering.

  ‘I’m so sorry,’ I say. ‘I-I don’t know how it happened.’

  ‘It’s OK,’ she says. ‘You just forgot.’ I can sense from the warmth in her voice that she means it, that she understands, that she’s smiling, but that icy coldness in my stomach doesn’t let go, it clings on tighter, even when she tells me she got my card, even when I hang up the phone. Nothing can ease the sadness, the mortification: I’ve forgotten my own daughter’s birthday for the first time in thirty-four years. A day that means more to me than almost 364 others. My logical mind knows that it’s the disease, not me, but on a day like today it’s hard to tell us apart. For the first time I really hate dementia, for what it’s stolen, for what it’s about to steal. I can’t forgive it, or myself.

  A mind can’t help fast forwarding, willing a happy event to hurry towards us, or agonising over that very same future in a darker light. There aren’t many of us who are content enough to live in the here and now. Instead we go about our daily lives thinking we have all the time in the world to worry and whittle about the minor distractions in our day: the grumpy colleague, a bus running late, the rain breaking through the clouds when we’ve forgotten an umbrella. How many times do we sit there on a Monday at work and wish the weekend would come? Or hope the weeks would fly past for a long-awaited holiday? And then something comes along that stops us right in our tracks – a divorce, a death, a progressive illness. Something that reminds us there is only today.

  That feeling – the need to remember everything, to burn things on to my mind like film before it’s too late – has been creeping towards me each day since my diagnosis, and is what powered me to create a memory room. I’ll be sitting at my desk and feel that urgency pushing towards me like a wave. Everything I know about my job – all that information I have stored inside my mental filing cabinets, the same ones my colleagues are used to accessing in a second – rushes forwards, and I fear the moment when that same wave crashes, scattering that information across the sand before the tide sweeps it back into a vast ocean, that individual wave and everything within it lost for ever.

  I scan all the folders on my desktop and feel panic inside. Over the last five years I have gathered all the information to ensure the roster system runs without fault, but much of it is now stored inside my mind, not in these virtual envelopes. With my memory becoming increasingly unreliable, how will I even know when this information is lost? Could it be next week? Next month? Tomorrow? I’ve noticed in recent days that my staff look up at me, confused, when I’ve shown them around the desktop of my computer, or offered to run them through the finer workings of the roster.

  ‘You know that sister can’t do nights,’ I t
ell them. ‘She has young children. You should make a note of that somewhere.’

  But I can see what they’re thinking: Why do we need to when we have you? There’s one particular member of staff who I have earmarked as the next ‘guru’, the one who will be well placed to take my title, and I find myself calling her in for meetings more frequently, sharing my workload with her, showing her more and more details about my role while I still can. She’s as capable as I knew she would be, diligently taking notes, but in my mind they’re never fast enough, there’s not enough paper in her pad or ink in her pen, there isn’t enough time to get everything out that is necessary, everything they’ll need once I’m gone. Or at least on the days that cloud over, when horizons become blurred.

  I sit on the bus home, looking out for landmarks in a bid to beat sleep from settling on my shoulders. What will tomorrow bring? A clear day or a foggy one? And what’s the forecast? Will this disease’s descent on me be a temperate one for the week ahead? I tell myself not to think further than today, but it’s impossible, especially when I’m tired, too fatigued to keep the fear at bay. It’s always the same three things that whittle away inside, and each time the thought of one creeps in, the other two leap to join it. The fear of losing my independence, of being unable to get a bus to and from town, let alone work. I glance at my ghostly reflection in the bus window, a reminder of another major fear: going over the edge into someone I don’t recognise, losing a grip on what makes me me. A time when decisions will be made for me, not by me. And then that naturally leads to the third fear, so painful that each time it comes to me I feel my heart twist in response: forgetting the faces of the two people who are most dear to me, Sarah and Gemma. My heart races then, out of control just like my thoughts, just like my future. Are these fears that we all face? Of losing independence and, eventually, our faculties? Fears that always seemed so far away, tiny dots on the horizon that once I would have had to squint to see. But dementia has sent me hurtling towards them. No wonder there is that sense of urgency, to fit in a future before it disappears forever. Will it be a slow goodbye or a quick one? The uncertainty is what fills my chest with panic. The not knowing how quickly time will become irrelevant. I thought I had life under control. Hadn’t I pictured retirement a long way from now, my car and me, driving to all the places in the British Isles too far to reach within a week’s annual leave? Hadn’t I just started earning enough to plan trips further afield, long weekends in Dublin, Paris? Wasn’t I going to see the world? What happened to all that time I thought I had?