Somebody I Used to Know Read online

  6

  The wind is brushing my hair, the ground moving beneath me. I look to my right at the river rushing by alongside me, and the faces speeding past in the opposite direction on the path. We say hello, I wobble slightly, but this feels like freedom, like independence, more like me. It’s a similar feeling to running again, except it’s not my feet that are hitting the pavement, but the wheels of my new pink bike. Getting outside, into the fresh air, connects me to a place where dementia doesn’t exist, just space and a big sky above me.

  I’d been out for a sunny walk with Sarah when we’d seen signs for a bicycle festival in Rowntree Park. We followed the river path into the park and there was a circle of colourful tents all displaying bikes for sale. We ambled round with no intention to buy and then I’d seen it, this bright pink bike propped up, an old-fashioned wicker basket strapped to the front, a brown leather seat and handlebar grips. It was perfect.

  ‘Are you sure?’ Sarah had said, but before she’d had a chance to question me, I’d paid the man and even picked out a pink bell and helmet to match. I wasn’t particularly a fan of pink, but I knew I’d never lose it, or forget which one was mine with such bright paintwork.

  Today is my first proper run out on it. I’d been a bit wobbly to start with, but a few minutes down the road I’d found the rhythm of the bike and got to grips with the brakes. As the world rushes past, I remember how painful it had been to give up my driving licence, but somehow this takes some of the hurt away and as I cover more ground my confidence grows. I remember how driving had become impossible, the speed of the car not giving me enough time to process, to work out what to do before a junction, but this bike moves more slowly, buys me more time for my brain to catch up. I see the junction approaching and I pull on the brakes. Everything is going well. I go to turn right, and then something happens, a disconnect. The next thing I know I’m on the tarmac, gravel biting into my flesh, stinging pain, a moment’s disorientation. I’m in a crumpled heap, bruised and confused. How did that happen? I pick myself and the bike up off the road, and look around. Thankfully it’s quiet; there are no cars. I know I’ve been lucky. I limp home, wheeling my bike at my side, going over and over what happened. There must have been a pothole in the road, something that caught the wheel and made me lose balance.

  A few days later I know I need to get back in the saddle. I try again, this time more tentatively, but then I feel the breeze beneath my helmet, the world whizz by, and my confidence returns. There must have been something in the road before. The same junction approaches. I scan the tarmac, but I see nothing. I go to turn right and the same thing happens, a disconnect somewhere, faulty wiring. I pull myself up off the road. Again, I’m lucky. What is it about my brain that means I can’t turn right? It’s not just the car, but the bike too. I look at my new pink bike, the perfect paintwork now scratched from my two falls, and my heart sinks. There must be a way of outwitting this disease, of keeping this freedom.

  My bike stands motionless for days while I think about it, and then it comes to me: a route to the shops and home where I only need to take left-hand turns. I can do this in one big circle. I pull on my helmet and take the handlebars of my bike, wheeling it out into the road and climbing on. As I swing my leg over the saddle, there is that moment’s hesitation, an anxiety that tries to take hold inside, but I ignore it, knowing if I pay attention to every single knot in my stomach I’ll be tied up for the rest of my life. I push away from the pavement and I’m off, that same light feeling in my ears, the world easing past, the smiles, the hellos from fellow cyclists, the nods of admiration for the outrageous colour of my bike. The first turn left approaches – easy. The second, the third, all of them done. I arrive at the shops and turn left to complete my circle and make it all the way home. As I approach home, my heart is racing, blood pounding at my temples, not with anxiety but with triumph. I climb off and prop my bike up against the wall.

  There will be more rides out; there will be the rose tree and two bags of compost I balance in my basket, wobbling all the way home, hoping that Gemma and Sarah don’t spot me and tell me off. There will be more of the outdoors, more freedom, independence. There will be all the journeys I take with a smile on my face, knowing I have outwitted Alzheimer’s again.

  I turn in the street, the crumpled map in my hand. I look from one end to the other. It all looks the same. But there is no sign, not the one I’m looking for, anyway. My breath swells hard inside my lungs and my throat constricts in response. Deep breaths, I tell myself. I walk more slowly this time, all the way up, all the way down. The café I’m looking for is still not here. I check the leaflet again. I had felt excited this morning when I left home to come to this dementia support group, excited and a little apprehensive, especially at the thought of walking in alone. I’d done up my dark blue parka before I left home, zipping over the hard anxious knot inside my tummy, and pulling the fur hood up to escape the cold. I’d arrived here, gearing up to walk in without anyone at my side, and then I’m lost. I check the leaflet again, and the map, then the street sign, the numbers; they seem to end at twenty-five. That can’t be right. I walk back again, past tall buildings converted into flats and huge Georgian residences behind black iron railings, but there are no cafés here. I walk back up to the top and then it occurs to me that there is a junction with another road beyond. I cross over and yes, it is the same street, and when I look up there is the sign. Relief expands inside my lungs but now my hands are clammy and I feel stupid for not being able to find the place, so by the time I walk in, I’m flustered and nervous, but a smiling face greets me.

  ‘I’m Emily,’ she says, reaching out a hand and introducing me to the others. It takes me a few moments to put away the map, to explain that I got lost and confused, and then I look at all the faces staring up at me without judgement or criticism and remember that I’m in safe hands, that they understand – even if it was just a strange road design that got me all muddled up rather than the dementia.

  I sit down and a chap called Damian makes me a cup of tea. He used to work for the Alzheimer’s Society, Emily was a mental health nurse, and they set this group up because they saw there was a need for more dementia support in York. Each sip of hot tea that slips down my throat relaxes me more. I take my coat off and look around the table. There are only a handful of us and I’m definitely the youngest. The others are somewhere between sixty and eighty, and one lady in particular looks very quiet. She stares down into her lap, listening, but keeping herself to herself. I decide that I’ll just listen today too, yet when people start to talk, I feel that same warmth that I did at the WOW Festival, a feeling of being amongst family, with those who know how it really feels to live with this new brain I’m still getting used to. But there’s something else; Damian and Emily don’t just want us to sit around and talk about what it’s like to have dementia, they want us to help make the town a more friendly place for those with the disease.

  ‘The council want to put together a new map of York for tourists,’ Damian explains, handing out copies of the new proposed sign. ‘They want us to ask you if you have any suggestions of how we can make it easier for someone with dementia to find their way around.’

  My hunched, unsure body unfolds itself in the seat. I pick up the document and take a closer look.

  ‘It needs some photographs,’ someone says. ‘To make it easier for people to identify where they are.’

  I nod.

  ‘And a clear “You Are Here” sign,’ someone else says.

  I nod again. ‘Yes, definitely,’ I say. So much for just listening. But it feels good to be asked.

  We spend the next two hours like that, with Damian or Emily asking our opinions on lots of other things. If one of us gets something wrong or gets confused, there is no judgement. We can relax, speak and be heard. We feel validated, all of us around that table. By the time it is time to leave, it feels like a month is too long to wait until the next session. I smile and say goodbye to all the new
friends I’ve made, and the lady who hasn’t spoken throughout the entire meeting smiles back.

  I walk home through York’s cobbled streets, past tiny coffee shops serving scones and jam to tourists, feeling happy that we’d been able to offer something to help. There is something else, too, as I follow the path, the satisfaction that fear hasn’t won the day, that I hadn’t given up just because I couldn’t find the café at first, or just because I was afraid to walk in alone. I know I have to keep pushing myself forward, to keep volunteering, to say yes to everything, to meet new people. Who knows what awaits me if I am brave enough.

  I lost yesterday. I don’t know what happened to it. People often ask me what it’s like to have dementia on a bad day, but it’s hard to remember; it’s like I’m not there. Perhaps I don’t want to acknowledge the days when Alzheimer’s wins, when I go to bed and pull the duvet up over my ears because nothing about the world outside of me makes sense. It’s like floating in and out of consciousness: one moment the world is in focus and I know exactly what I’m doing, the next it means nothing at all and I can’t even say what I’ve just done. On those days I can feel the disease in my head, like it’s eating away at all that is good in there, claiming more brain cells for its monstrous mission, stealing memory upon memory. On those days my head feels fuzzy and inflamed, as if it doesn’t belong to me – and it doesn’t, it’s given over to the disease. I heard an analogy in a Dementia Friends session once, that the disease is like taking your Christmas tree lights out of the box each year; you unwind and untangle them, plugging them in to check for loose connections, and along the wire some tiny bulbs flash on and off, some don’t come on at all, but you can’t predict which ones are missing, the fault on the line, when or where it will occur.

  On bad days, there is a fuzziness, similar to the way the picture on the telly looks when it starts to break up, making it harder to decipher. A fog descends, confusion reigns and there is no clarity from the moment I open my eyes. Where am I? My own handwriting on the notepad beside my bed is a mystery, the words written by a stranger who slipped away while I slept. On those days there is little in my brain to help me through; it’s as if it’s been emptied overnight in my dreams, rebooted and restored to factory settings. Every day the alarms set on my iPad and in my phone remind me to take my medication. A simple task, something I do every single day, twice a day, and yet on bad days the alarm rings and it’s as if I’m seeing it for the first time. Every single time. If there’s no alarm, the task doesn’t exist. On those days, there’s a feeling I can liken to a fine necklace being all tangled up. I sit there for hours, trying to untangle the knots. To make my brain work hard to tell me the simplest of things. What day is it? Have I set any reminders on my phone? Laid out any clothes that will give me clues? If I’m feeling calm, I can sit there patiently and untangle the necklace, working out the reality of the day, or simply waiting for the fog to lift. But if panic rises in my throat, if it gets a hold of my heart, making it beat stronger and faster and louder, if I give in to it, then I become impatient with this metaphorical necklace and it takes all my strength not to throw it all over the floor, scattering thoughts like beads.

  The key is always calm thoughts, waiting, looking at anything that distracts me from the fog; photographs in my memory room, a smiley face, a hill, a lake, a daughter.

  It’s not just what I can’t see or fathom, it’s what I can see, too. What I think is real, but is just an illusion designed to trick me by a brain gone AWOL on days like that. One morning I came downstairs and looked out at my back garden. My shed had gone; there was a blank where it once was, just a concrete base. Instead, a carpet tile lay on the fence. Perhaps it was the way the assailants hauled it out of my garden, my logical brain tried to reason. But then something cut through, more logically: a shed can’t disappear. Can it?

  I could have panicked then. I could have called the police and registered the crime. But instead I looked harder, wondering whether my mind was playing tricks on me. Instead I told myself I’d go back in thirty minutes; if it still wasn’t there, I would know it was real. Later, the shed was there, of course it was. But this kind of thing happens a lot. There are sounds too. I have sat in my living room, relaxing in my chair, and the sound of gunshot has gone straight through me. I sit up in an instant, an ice-cold tingle shooting down my spine, my heart racing hard. But when I’ve looked outside and searched the streets for people fleeing, a road scattered with bodies, there has been nothing there, just folk going about their business. The gunshot nothing but a temporary short-circuit in my head. Just like the knocks on the door when no one is there.

  I’ve learned to sit quietly on those bad days. I’ll sit and watch the birds come and help themselves to breakfast in my garden. Their reliability brings normality to these confusing times. I can’t always rely on what I can see or hear. Whatever I’ve seen is not always there; whatever I’ve heard doesn’t always sound like that. Don’t panic, just wait; it’ll be OK. Logic has to win the day.

  The one thing I remember about bad days is that I tell myself tomorrow will be better. It’s not me: it’s this cruel disease invading my head. At least I can still decipher the good days from the bad. I do wake up and wonder, Which me am I today? But at least I can still tell the difference, that’s something to be thankful for.

  I’m back on Tanner Row to return to the support group, and this time I find the café easily; the me who was last here helpfully circled the place on the map in biro. There is no fear or hesitancy as I walk in this morning, I might not remember the faces around the table, but I remember that I felt very relaxed around them. This time, as we sit around the table, we decide we want to come up with a catchy name for our group in the hope it will attract others. Many of us around the table make suggestions – all the usual culprits, those of us who are always first to speak up and now I include myself in that. I’ve found that saying ‘yes’ suits this new me, that being part of something, of decisions, of offering opinions, feels good inside. We’ve had one other meeting in between this and the first one, and I spoke up more then, but the lady I’d noticed before, the one who sits quietly, watching her hands in her lap, didn’t say a word. She’s here again today, though; perhaps she just likes the sense of being included. I can understand that.

  We offer suggestions from each side of the table, brainstorming and going backwards and forwards, and then a tiny voice speaks. We all look up.

  ‘How about Minds and Voices?’ the usually silent lady says.

  ‘I like that,’ I say, and pride fills her face. I recognise in her a sense of achievement, of her heart filling with that feeling of being relevant in the room again; she grows in her chair in front of me.

  Unanimously deciding to name the group York Minds and Voices, we come up with the strapline then: ‘opening minds and moving forward’. That sums us up perfectly.

  7

  Between me and the stranger sitting at my dining table lies a small black video camera. Jim – a reporter for the BBC – has gone over how to use it several times, despite the fact I’ve got Sarah there as my memory. I’ve written down everything that he’s said, and I know I’ve probably asked him the same question many times, but he’s very patient, very good-humoured. He makes me feel calm and the black thing between us isn’t half as scary as it was when he plonked it down, all wires and buttons. As I write down again where the power switch is – determined to remember everything myself – Sarah is asking him complicated questions about zooms and editing and all the Spielberg stuff.

  When there’s a pause between them, I stick my head up. ‘Um, can you show me again how to switch it on and off?’ I say.

  It is January 2015 and Jim is here because the Hollywood film Still Alice, starring Julianne Moore as a woman diagnosed with young-onset Alzheimer’s, is about to be released in the cinemas. The BBC’s Victoria Derbyshire programme wants to make a short film to coincide with its release and they have given three of us living with dementia video cameras to r
ecord snippets of our everyday lives over a month.

  There are many days when emails land from the Alzheimer’s Society asking me if I would be interested in taking part in some interview or another. I say yes to everything while I can. I don’t know how long I will have to take advantage of these new experiences, so I grab every one, even the ones I’m frightened of – especially the ones I’m frightened of. That’s how I was put in touch with Jim. My job in this short film is to represent the early part of the disease, Keith Oliver will show the middle stage, and a man called Christopher Devas will represent the late stage, with his wife Veronica filming for him.

  When Jim leaves, the equipment he’s left behind sits staring at me from the table. Occasionally I take a closer look, a hand tentatively wandering across the buttons. I jump back when it springs to life. It’s now or never, I tell myself, taking a deep breath. I pick up the camera and start walking around my house, talking into the microphone, recording the front of the fridge with my calendar pinned to it showing what I’m doing that week. Or at least I thought I was filming. When I finish, I go to ‘play back’ and realise I had forgotten to press ‘record’. I try again, and this time the mic is the wrong way round, but the video camera feels more comfortable in my hand, and despite getting it wrong, my confidence is growing.