Somebody I Used to Know Page 14

  ‘Jim?’ I call.

  He puts his head down, sure that he’s about to walk past straight past me, but instead I say hello in my cheeriest way.

  He mumbles hello back, but doesn’t seem keen to stop and chat.

  ‘Have I done something to offend you?’ I ask, puzzled.

  He stops then. His eyes flick away, keen to avoid my own.

  ‘I-I saw you in the local paper,’ he says.

  I laugh. ‘Fame at last! Although they could have taken a better photograph and made me look ten years younger!’ He looks uncomfortable. ‘Is that the reason you’re not speaking to me?’

  He sighs. ‘I just didn’t know what to say.’

  ‘The picture wasn’t that bad, was it?’ I laugh, trying to lighten the mood.

  He looks down at his feet on the pavement and shuffles his weight. I don’t mean to embarrass him.

  ‘How can you have dementia when you ride your pink bicycle?’ he asks.

  This time I don’t make light of it. I can see that he doesn’t understand, so I start at the beginning.

  ‘Dementia has to start somewhere,’ I explain. ‘It doesn’t always mean the end stages, and I’m just an example of someone at the start of the journey. I’m no different from the day before you saw the article; we were chatting that day.’

  He nods, as if it’s sinking in slowly, somewhere. He goes off for his newspaper, his gait a little slower this time, more thoughtful.

  But the next morning when he passes by the house, he doesn’t cross the road. In fact, he walks right up, newspaper under his arm, and we chat about all sorts – especially the weather.

  ‘Are you OK?’ he asks, a little more carefully than he has before.

  ‘Yes, thank you,’ I tell him with a smile.

  He goes on his way, satisfied.

  If only it were that easy to explain to everyone, because I have noticed that more than just a few friends have gone to ground since they heard about my diagnosis, some who I have known my entire life, and it has been hurtful. There have been the emails sent that have never received a reply; at first I put it down to busy lives and eventually send another. Again, into the ether. There have been the friends who would make a point of getting in touch every couple of months, then I realised there had been silence. There were fewer Christmas or birthday cards, less news travelling up and down the phone and broadband wires. People who had shared a lifetime with me now didn’t seem to want to share a text or email. It wasn’t something I noticed all of a sudden – it was a realisation that crept up on me. Where had everyone gone?

  For every friend who had disappeared, there were, though, the ones who stayed, and they were full of empathy and love, and even practical solutions. The Feegrades, who read on my blog how often I woke up without a clue which day of the week it was, gave me a gift when I went to stay, a big bold bedside clock that had the day, month and year on it as well as the time.

  I’d added the name of my blog on to my email signature, so even if people weren’t answering my emails, it was still possible to see what I was up to, even if their own news wasn’t returned in the same way it once was. It took almost eighteen months for one very close friend to get back in touch. He asked if he could come over and take me out for supper, and when he saw that I could still string a sentence together, I watched as his shoulders relaxed away from his ears. He’s never mentioned the word ‘dementia’ to me – not even now – but at least he’s back in touch.

  Another two friends admitted they’d followed my blog, even if they hadn’t been in touch with me directly.

  We felt so stupid for thinking that you’d be anything other than positive and still active, they wrote when they decided to get in touch again.

  But I was still me. Still me, but with a diseased brain. What is it about this kind of illness that makes people so frightened? Is it the thought that it might happen to them? Is it rubbing shoulders with their own mortality that scares them away? What do I remind them of, or make them fear? Is it simply the future, because my own brain is only declining the way everyone else’s does eventually, but at ten times the speed? But they can’t discover the truth about dementia unless I welcome them back in, which I do. I have to. There is no point in educating strangers if I can’t make even those closest to me understand. Just like Jim, they’d heard a diagnosis of Alzheimer’s and pictured me in a care-home bed, waiting to die. But could I blame them when that had been the exact same image overwhelming my own brain back at the beginning?

  It was my words that changed everything, but not spoken ones, written ones. Dementia may have stolen the words from my mouth, it might have made it harder for me to grasp hold of the ones I’m searching for in time to finish a sentence, but the part of my brain that can type fluently is still intact. Friends are amazed when they read how I spend my days going up and down the country attending conferences and overseeing clinical trials, then writing all my findings down in my blog so I can help others.

  ‘You’re busier now than you were when you were working,’ more than one has said, and it is true.

  I’m keeping myself busy now to forget the fact that I’m losing the past. I’m creating memories and keeping them safe on my blog so I can hang on to the present, and create a new type of personal history, simply because I don’t know what the future holds. But friends and family are the keepers of the past, they are the guardians of the bits that dementia can’t steal. They may not have the exact same memory that I do of events, but they were there, they can tell me, or they can listen while I tell them, so it seems more important than ever to hold on to the people who bore witness to my life. They will, after all, be best placed to tell me what it was like once dementia has done its work.

  There is another benefit to being friends with me of course: they can talk to me, pour out the most confident details of their lives and I always remind them: ‘Your secret is safe with me – I’ll have forgotten by the time we walk out of the room.’

  10

  You loved the hustle and bustle of a city. The continual sirens weaving through the city walls and stationary traffic, the world alive with noise, every sound a clue to the vibrant environment surrounding you. It made you feel alive to be a part of that. You’d eavesdrop on tourists ambling through the cobbled streets of the Shambles, listening to their conversations and chatter, smiling or laughing at glimpses of their lives caught up among the chaos of the day. You liked the fact that the streets were busy, that you were one of a swarm of people making your way through the lanes. You liked the bikes that weaved around you as you crossed the road, the cars that beeped, waking up the tourists sleepwalking across the road or the ones staring up at the spires and steeples of York Minster. You liked being a part of that busy community, the way that every single one of your senses was stirred and stimulated by the buzz of life going on every time you stepped out of your front door. City life was the only life; you couldn’t imagine being anywhere else. How alien all that seems to me now.

  ***

  I walk out of my front door and it’s there. It comes at me from every direction. It doesn’t just hit my ears – it smashes into them, rolling around inside my brain. I swallow and down it goes, rumbling around inside my tummy. Noise is everywhere and much louder than before. I hadn’t noticed it up until now, but more recently I’ve found myself cowering once I step outside the front door, as if the world has turned up its volume overnight without telling me. How I wish I could just reach for a remote control and turn it down again.

  I walk outside my gate and press the button on the pedestrian crossing. The traffic lights turn red and the green man starts to flash as I cross the road, and I wince as I do, the beeps ringing in my ears louder and louder, a shrill sound that penetrates deep inside. I reach up and cover my ears with my hands; perhaps the council have adjusted the sound on the speaker, perhaps they really have made it louder while I slept? I carry on walking, but there is soon something else. In the distance I spot a flash of blue lights. I stop on
the pavement, stepping back from the kerb in time to watch the ambulance go by, but when it races past I jump back a few feet, the noise taking my breath away, the sound still stinging inside long after the ambulance has disappeared up the road on its emergency mission. Why does noise suddenly hurt so much?

  By the time I arrive home I am grateful for the peace it brings. I sit down in front of my computer and type ‘heightened hearing and dementia’ into the search bar, and I’m surprised by the number of results that spring up. I read page after page about other people who have experienced the world as a louder place since being diagnosed with dementia – all from those living with the disease, no explanations from medics. The more I read, the more my heart sinks into my lap. I sit back in my chair and I already know what this means: I’m going to have to leave my beloved city. I look around the walls of the house that I had been so sure would be my forever home, and I know that I will soon need to take pictures down from hooks and pack books into boxes. What was once my peaceful oasis, my calm in the middle of a busy city centre, is everything I don’t need now. It is simply too noisy.

  Over the next few days the sirens dashing through York seem to get louder and louder, though perhaps I’m just noticing them more. Our narrow streets weren’t built to allow four-tonne ambulances through, and while they slow to navigate cobbled streets and centuries-old walls, I stop and cover my ears, pain penetrating my eardrums. The chatter of tourists is overwhelming, snippets of conversations now feeling like a swarm of bees inside my mind, making me lose track of my thoughts. A child’s cry is so harsh and piercing it stops me still in the street. Everything that was part of the reason I loved the place, that made up a soundtrack rich with tones and tales of the city, is now the same reason I need to leave.

  But where to go? Everything that I have read about dementia tells me that moving home after a diagnosis can be very unsettling, and so I push that thought to the back of my mind. Instead I buy earplugs, foam ones that mould themselves to the shape of my ear. I step outside and the world is a silent place; it reminds me of winter, when snow falls and lines the streets like cotton wool, muffling the sounds underneath with a thick blanket of fluffy white. But the earplugs take away something else – my ability to hear the sounds that are important, like the cyclist approaching from my right whose path I step into, almost knocking him off. I pull the plugs out apologetically, trying to explain. These are no good; I need something that will take the edge off but still allow me to hear some things. I find some bright-pink earplugs in a shop a few days later, and they do help, but they’re not enough. The weeks go on as York slowly turns up the pitch, and then it seems impossible to ignore it any longer, to block out the sound. It’s not York; it’s me who has changed.

  I start scouring the internet, looking for houses in quieter areas of York, but all of them are outside my budget. Without a job, I need money left over from the sale of my house to adapt a new home, to future-proof for whatever dementia has to throw at me. Day after day I give up on property searches, a heavy black feeling sitting deep inside my stomach as I close my laptop. I’m not ready for this change. I didn’t ask for this to happen to me. I resent dementia for stealing the image of my future that I’d so carefully created in my head, as if the disease has just reached in there and plucked it out without me noticing. And all I can do is adapt.

  This weekend I’m staying with Gemma and her boyfriend Stuart in their quiet little village 30 miles from York. I am settled in their spare room, having a moment’s peace from the conversations over the TV downstairs. I stay in the converted loft room when I’m here, Billy often curled up in my lap, and I look out at the birds and nature, trees gently swaying in the breeze on the other side of the window, the only noise being the leaves rustling, or a faint tweet from a starling or thrush. Nothing too testing. I amuse myself in the daytime walking down to the village shop for a weekend newspaper, smiling and exchanging hellos with everyone that passes by. The people in the shop are so friendly. I always get the impression they know a little of everyone’s life, and perhaps that’s how places like this cling on to communities, by sharing little titbits. They haven’t yet firmly closed their front doors, all life taking place behind net curtains. It can make a person feel safe.

  And then I have an idea. I lift Billy off my knees and find my laptop to start searching for properties in the village. Could I be happy here on my own if Gemma ever moved away, I wonder, as a list of properties outside my price range pops up. I sigh, defeated, and close the laptop again, that sense of not belonging sitting awkwardly inside. Hadn’t everything been mapped out before? Didn’t I know where I was going – even where I’d been? Instead I’m left with blanks.

  Over the next few weeks, I make more visits to the village, always with the same thought in my mind: could I be happy here? I notice more and more the tranquillity of the place. I stand beside the duck pond on the little decked path, throwing in special food sold at the village shop in tiny bags. Even the ducks are looked after here, and I sense they know they’ll get more than their fair share from me, just like Billy does. I start seeing more benefits: the shop, the post office, the bus that goes straight into York from the town nearby. I wouldn’t be giving up the city completely; it would still be there, at the end of the line.

  I return to York a few days later and Sarah comes over to help me clear out some cupboards. The move will start before I’ve even found my home, I decide. There will be no last-minute packing this time, everything will need to be pared down months in advance. We start in the kitchen, getting rid of old cans of food or spices long past their sell-by date. I look twice at the date on the cans before I throw them away – that would never have happened before. We chat as we go, remembering stories from the numerous moves over the years. I start on a cupboard packed with kitchen utensils.

  ‘Do you remember the garden at Hyde Close?’ I ask, pulling a cheese grater from the cupboard.

  ‘You would never imagine there had been a lawn under there,’ Sarah says, remembering how it had taken me a whole week to cut back all that overgrowth.

  I pull another cheese grater from the cupboard.

  ‘And the state of those windows there! You and Gemma had to clean them with tiny toothbrushes, do you remember?’

  I find another cheese grater, and put it in the pile, giving it a quizzical look as I do.

  We carry on chatting as I go further back in the cupboard; there are ladles, wooden spoons, an apple corer. And another cheese grater.

  ‘Strange,’ I say, turning to the pile behind me. ‘I’ve already found three of these.’

  Sarah and I start laughing, but by the time we’ve reached the back of the cupboard, ten cheese graters line the kitchen worktop. We stare at them, both of us wondering how at some time I must have convinced myself I didn’t have one.

  ‘The strangest thing is, I don’t even like cheese that much,’ I say. ‘Let alone grated cheese.’

  We’re giggling as we put together a bag to go to charity – nine cheese graters making up the bulk of it. It doesn’t feel so bad then, thinking of the move, not with Sarah beside me, laughing with me. I can do this. Just as soon as I find the right place.

  Most people dread moving home, but you always saw it as a chance to have a clear-out, a chance to put old things in new places, to start again. You’d collect boxes for weeks before from the supermarket, you’d sit with your feet up long after the girls had gone to bed and make lists of all the things you needed to do. When it came to packing, you were a pro: brown parcel tape to seal the boxes, one room at a time systematically packed, a clue inked in black marker pen on each side of the box to tell you. Right-hand side of desk was enough, your brilliant memory itemising everything that was there. Box after box was sealed and stacked neatly in the corner of the room, key items like hammers and screwdrivers, kettle and teabags all in the box labelled Important Box – the last to be Sellotaped up, the first to be opened the other end.

  You never told the girls until
everything had been signed on the dotted line, just in case it all went wrong. The first time you moved it could have been sad, moving from the family home to a smaller house in Hyde Close, a quiet cul-de-sac just round the corner, but you made it exciting with tales of a better sweet shop nearby with a much broader selection than their current favourites. The new house had two double bedrooms and a small box room. It could have been a problem, but you knew Gemma liked all things tiny and you already had ideas about how to make it the perfect space, so by the time Sarah had claimed the bigger room, Gemma was sold. You noticed the little box room had a door that opened inwards when you looked around, and made a mental note to put the screwdriver in the ‘important’ box to remove it the minute you moved in.

  On moving day the girls sat in the back of the car behind you, Important Box between them, chattering about the adventures you were going to have in the new house. You probably didn’t hear them, too focused on the list in your pocket that you’d drawn up, the one detailing all the chores you needed to get on with in turn; cupboards to clean, paintwork to wipe, carpets to hoover. Each item waiting patiently to be crossed off.

  As the removal men arrived, the girls zipped between empty rooms and up and down stairs, while you got to know the house yourself, peering through dusty windows at an overgrown garden you couldn’t wait to get your secateurs on. But it would have to wait. As each box arrived, the girls looked hopefully for their treasures among them, every bit of organisation you’d put in at the other end making it easier for the removal men to do their job.

  You’d look around at all the unpacking that needed to be done and would always start with the Important Box. Kettle on, teabags fished from the bottom and plonked in a mug, your ceremonial first cup of tea in the new house and squash made in familiar plastic tumblers. After that it didn’t take too long to get everything straight. The girls were desperate to help, so you fished toothbrushes and Jif from Important Box. They looked up at you, confused at first, until you showed them the windows in the bedroom and the black that had collected in the corners. Tiny hands for tiny jobs, They looked amazed when they saw how clean the toothbrush made it, and within moments the chatter was replaced by intense concentration, each trying her hardest to make her window the best. While they did that, you cleaned cupboards and vacuumed floors, wiped paintwork and made beds. The list got shorter and shorter and your satisfaction grew as you turned it black by scribbling things off.