Somebody I Used to Know Page 13

  I stand for a few moments, smiling to myself. Only, when I look up again, the place where I was standing has gone. I spin around, scanning the buildings, but nothing is familiar. The trees whizz by, red-brick buildings and small Georgian panelled windows, but no clues. Where am I? I look at the people close by, but blank faces stare back, strangers. Panic rises then; it comes from deep inside my chest, stealing the breath from me as it does. I try to take deep breaths, but they’re too fast, too sudden, my head feels light. Where to go? The busker still sings and it’s too loud, each twang of his guitar stripping thoughts from my mind. I’m scared. I’m lost.

  I stumble back through the crowd, looking for an open space, staggering this way and that. Lanes shoot off from the square, odd-shaped streets with strange pebbly floors that mean nothing to me. Now I’m frozen to the spot, too scared to move. My eyes scan, searching for something familiar, a clue. How did I get here? Where had I come from? The rain: I need to get inside. I see a café sign then, over the heads of people in the crowd, blue and familiar; something draws me to the safety of it. I cross the square. A car beeps its horn. I jump, but carry on across the road. I need to get inside, to think and sit, and wait for the fog to lift. How did it descend so quickly? Like driving on a bright day right into a thick cloud.

  I go into the café, find a seat in the corner and sit. Droplets of water drip into my shoes. I’m still. I don’t register the other faces or look at the staff. I know I’ll be safe here, an instinct breaking through the mist. I stare out of the window, the scene beyond it still alien. Look away, I tell myself. Instead I reach for my red haversack and pull a newspaper from it. I flick through the pages, my eyes scanning the black and white, not taking in any of the words or stories or pictures, just waiting. Waiting for the world to clear. Waiting for time to pass. How long do I sit there before a sound cuts through? The busker playing outside. I look out of the window and there he is. And beyond him, a familiar chocolate shop; next to that, a biscuit shop, the baker’s on the corner; the square is coming back into focus. I manage a smile.

  I sit there a little while longer, just to be sure. I get a coffee and stare out at the square I know so well but which had been lost in an instant. How did that happen? A short circuit in my brain, a disconnect somewhere between my eyes. I’m reminded that this disease can steal the past, the present and the future.

  The sun has broken through the clouds by the time I leave. I shuffle back through familiar streets to home.

  ***

  None of us are born with fear: it accumulates alongside life experiences, and I can still remember where your fear of animals came from. It sounds ridiculous now, but you never had pets, so the idea was alien to you. When you were a child, you were chased one day on your scooter by a large black dog, barking and baring its teeth. The fear you felt was enough to see you through the rest of your life. After that you’d cross the road to avoid someone walking a dog and cats were the same – the hairs on the back of your neck would curl up if you passed one sitting happily on a garden wall. When Gemma got cats you were terrified of all of them, so much so that she’d put them out whenever you went round to her house.

  Billy, a handsome black cat with yellow-green eyes, made you very wary. If he walked into the room while you were there, you were instantly nervous and on edge. It was as if he knew, as if they all knew – they gave you a wide berth, too. Was it mutual dislike or respect? It didn’t matter as long as they weren’t near. How different you are from me; if only I’d been there to act as a conduit. Just the other day I was looking after Billy for Gemma; each time I do, I’m sure that he can hear my stick and shuffle coming round the corner of the house, because I put my key in the front door and he’s sitting waiting for me every single time. You probably would have refused to cross the threshold when you spotted those two big eyes staring up at you, anxiety would start eating away inside, but for me all stress dissolves at the sight of him.

  Billy pads into the kitchen, performing a tiny dance in front of my feet before he finds the patch of sunshine on the kitchen tiles. He flops down on to it while I scratch the back of his ears and he purrs his approval. I shake some biscuits into his bowl and he gets up and crunches on them noisily. He’s only allowed a few, as Gemma has put him on a diet. She’s not sure why he’s put on so much weight recently; even the vet commented on it.

  I make myself a cup of tea, and as the kettle boils I feel Billy’s tail curling around my legs. I glance at his empty bowl.

  ‘Oh Billy, have I forgotten to feed you?’

  He looks up with big, sad eyes, his purr audible over the boiling kettle that switches itself off. I shake a few biscuits into his bowl.

  I know our routine after this, despite the fact that so many other things desert my memory every single day. I sit and sip my tea, and he paces around looking for the piece of red string with slivers of gold, the one I used to decorate his Christmas gift. It has become his favourite toy. He disappears and I find him on the stairs, sitting beside it, saying, ‘Here it is,’ with those yellow-green eyes. We go up to the loft room – more space to play there – and I tie a knot in the end for him to catch in his claws and our game continues until he loses interest. Afterwards, I sit down in the chair. Billy comes to sit beside me, and as we look out over the orchard, just to have him near makes me feel calm inside. He jumps up on to my lap and I run my fingers through his soft fur.

  I know I wouldn’t have been able to do this before, but I’ve learned so much from animals. This change in my personality, this softening in one part of my brain, has meant that I’ve made time to sit and stop and watch, much like they do. Animals lead a simple life – they live in the moment, and that’s what I’ve found I have in common with Billy, an appreciation of now. Many fears have left me now. Perhaps it’s because nothing can be more frightening than dementia. I live every day with the unknown, which is possibly why I’m not afraid any more: of cats, of the dark, of the disease.

  A few moments later we hear the front door open, and both of us go downstairs to greet Gemma home from work. We meet her in the kitchen, flick on the kettle for a cup of tea and while Billy sits on my lap, Gemma and I catch up on the day. Twenty minutes must pass like that and then Billy jumps down from my lap and sniffs at his empty bowl, then sits staring at it.

  ‘Ooh,’ I say. ‘I must have forgotten.’

  Gemma looks at him, unsure. ‘The vet said Billy has to lose weight, but he must be getting fed by someone else, because his diet isn’t working. You are only giving him a few biscuits when you’re on Billy duty, aren’t you, Mum?’

  ‘Oh yes, I’m sure I do,’ as I shake more biscuits into his bowl and Billy purrs happily.

  9

  I’m sitting in front of the consultant while he scribbles down the results of my latest set of mini memory tests. From the other side of his desk, I try and fail to read his writing. Finally, he sits back and sighs.

  ‘You’re a little worse than last time,’ he says, and despite the fact I know I have a progressive illness, I feel my heart sink inside my chest.

  I shuffle out of his office, feeling sad that my diseased brain has let me down yet again. I don’t know exactly how or where, on which part of the test or which specific questions. All I can remember is the word ‘worse’. I go to sleep with the word ‘worse’ settling down on the pillow with me.

  Of course I know I won’t get better, but I often think now about how important the doctor’s choice of words and use of language is when speaking to patients. Might I have felt less helpless if he’d said: ‘This time you scored twenty-six; it seems your coordination was the problem. What can we do to help with that?’

  Just leaving out the negative word ‘worse’ would give hope that I could find some way to outwit the part of my brain that is no longer working as it should. It would also give me some confidence in the bits that are still working well, and perhaps even some insight – for example, my game of Scrabble every morning seems to be helping, so I’ll keep d
oing that. I would feel empowered, rather than helpless. I could help myself.

  Like other people, when I was given my diagnosis I was told: ‘There’s nothing we can do, I’m afraid.’ I can still remember the feelings of loss and fear and hopelessness, and in the days and weeks that followed, all I could think of was that word ‘afraid’. It felt so negative, so scary. They were ‘afraid’ there was nothing they could do. I was ‘afraid’ there was nothing they could do. What about if instead I’d been told in a different way: ‘Yes, the diagnosis is dementia. I’ll put you in touch with people who can help you to adapt, people who also have a diagnosis so you can share tips and tricks.’ Immediately I would have had hope.

  A few weeks later I’m standing in front of a group of student nurses as I deliver a talk. They sit eagerly in front of me, their hands in their laps, guarding notebooks and pens, and I start by asking them which words spring to mind when they hear the word ‘dementia’. I turn to the whiteboard as they call them out: Demented, senile, burden, sufferer, old age, living death …

  I pause and look out at the room.

  ‘Imagine how that makes me feel to hear you say such words,’ I say. ‘I mean, I know I look old and my hair is a bit grey, but that’s because I don’t dye it – unlike your lecturer, Rob!’

  He pretends to squirm and everyone laughs.

  ‘But in the grand scheme of things, I’m relatively young to have developed dementia. And do I look like I’m “suffering”? Do I seem to be a “burden”?’

  I hear a few pairs of feet shuffle uncomfortably. I write down the words on the whiteboard and then turn back to them to explain how positive language leads to positive well-being and how negative language brings anyone down.

  ‘If your boss were to tell you day after day that you were stupid, it would bring you down and you’d start to believe it,’ I say. ‘That’s how we feel when you continually tell us we’re “suffering” from dementia. A diagnosis of dementia is bad enough – that’s devastating news – but that’s where negative language can stop and positive language can begin. If someone tells you day after day that you are a sufferer, you end up believing it. We “struggle” on a daily basis to outmanoeuvre the challenges we face but, often with help, we can find ways of overcoming those struggles.’

  I have the full attention of everyone in the room. I tell them they can replace the word ‘suffering’ with ‘living with’.

  ‘I’m not denying or minimising the considerable challenges we face. I’m simply saying it sounds better,’ I say. And they nod. They’re getting it too.

  I think back to my own diagnosis, and how it was only actively changing my point of view that replaced impossible with possible. ‘I like to concentrate on what I can do, not what I can’t do, but sometimes we need your help to do this.’

  I tell them how the media don’t help either, always referring to ‘dementia sufferers’, and how dispiriting the images are, too, such as the photographs of bed-bound old ladies that I’d found when I’d first googled dementia. I tell them about the support groups I’ve sat in, the husbands who bring their wives, or vice versa, and how the partner always speaks for them, describing their wife as ‘suffering’ from dementia. How, when it gets to my turn, I always say: ‘I’m not suffering, I’m living with dementia.’ I tell them about the one time I did that and how the wife who was being spoken for lifted her gaze to meet mine, the seed sown in her head; dementia didn’t have to be the end. It wasn’t for me.

  There have been many moments over the last few months when I’ve felt the empty space by my side where a significant other should be. There is a picture that exists in the back of our minds of spending the evening of our life with someone else to keep a watch over us. We know our children will have lives and families of their own, but we never picture ourselves alone. I would be lying if I didn’t say that there have been moments when I’ve looked around a room and missed having someone with me. At the Still Alice premiere, everyone seemed to be in couples. Everyone with dementia there had their own walking memory beside them who could make sure they’d taken their tablets, or eaten, or had a drink that day. But there is another side of me who has seen the pain that’s written across the faces of loved ones who watch their partners decline. I have often thought that I wouldn’t like the pressure of a husband for that reason.

  There are other things too. When you live with someone it’s quite natural to move things around, to tidy up or to be messy, but all of those things would be unhelpful to me. I used to be really tidy, but now I leave paperwork out, because if I put it away out of sight it stops existing for me. My kitchen worktops are strewn with papers that I need to let me know what I’m doing for the week ahead: the conferences where I’m giving talks, the places in London or elsewhere in the UK I need to go to meet with a research committee or a steering group. Now I am the messy one. If I lived with someone messy and things were in my way that wouldn’t normally be there, I’d constantly be tripping over. It’s true I don’t have someone to jog my memory, someone to be a back-up brain or a constant companion, someone to laugh with or just to hug me when things go wrong. But I also don’t have to worry if I’ve upset someone by not remembering something, or someone urging me to eat when I’m not hungry, correcting me, finishing my sentences, or fussing when I’m having a bad day.

  Yes, the picture in my head looks a little different from the one I might have imagined for my retirement, but my independent nature – which has so far defeated this disease – would never want someone to take over tasks just because they’re taking me a little longer.

  So perhaps that space by me is there for a reason.

  You were sitting on the little wall outside the back door, mug of tea in hand, staring out at the summer flowers that had broken through the soil. Being a single mum was still very new and some days were lonelier than others. A voice snapped you out of your thoughts.

  ‘Fancy bringing your cuppa over here?’ You looked up and saw Julie’s cheery smile peering through the gap in the fence. Her husband Terry had taken a fence panel out months ago so the children could move between the two back gardens – her two boys and your two girls. Altogether you made a nice big family, and that’s still what you needed to feel some days, part of a family. Julie and Terry Feegrade weren’t without their own problems. Their eldest son, Jason, hadn’t been expected to survive more than a few years, and even now he couldn’t speak or hear. You signed ‘hello’ to him, sitting happily in his wheelchair, as you went through the fence with your cup of tea.

  I wonder if the Feegrades ever realised just how much they meant to you and the girls. There were Christmases they wouldn’t hear of you spending on your own, always making an extra three seats at their table for you. Everyone would budge up, elbows knocking each other as you tucked into a roast turkey dinner, and Julie’s infamous curry was always there for anyone wanting an alternative. It just made it more fun to be all together. There was the time you all went on holiday to Spain – the girls would have been about seven and four then – and the three of you were more excited about a first ride in an aeroplane than anything else. You’d landed in the pitch black and then Terry had handed you the keys to a hire car.

  ‘We’ve got two cars,’ he’d said. ‘And no one else can drive apart from me and you.’

  There wasn’t any time for nerves, so you got behind the wheel in the dead of night and followed him on the wrong side of the road to the villa you’d hired between you. You’d gripped the steering wheel all the way, terrified, but by the time you stepped out of the car and hauled the suitcases from the boot, you were thrilled by the challenge.

  You’d even taught Julie to drive once you were back in the UK, your lessons filled with danger and near misses, but most of all laughter. There was the time when you persuaded her to try and overtake a milk float on the dual carriageway; she’d gone into second gear instead of fourth and lost her confidence, so you’d both sat giggling as you trundled along at 20 mph.

  Those
were the friends who filled the gap where someone else should have been, who laughed and listened, who fetched tissues and made tea when you cried. Who made life fun for the girls on the days when the world seemed to cave in on you, and just like that, day by day, you got through it and came out the other side. Stronger. Better. Happier. Because friends were everything.

  When you moved to York you found a teabag one Christmas in the shops that perfectly summed up your relationship with Julie. It had a little tag on it that read: I cannot sit and chat with you, just like we used to do, so make yourself a cup of tea, I’ll think of you, you think of me.

  I’m outside in the front garden, pulling weeds from where they hide under stones, when I see him, my neighbour, Jim, walking down the street as usual. I wait for him to walk right by my house. I drop the fork from my hand and push myself up on my knees, ready to greet him with a smile, but as I do he crosses the road to walk on the other side. I look back to the soil for a second, confused. This also happened yesterday, and the day before that. He’d normally pass with a cheery smile and wave, or he’d stop and we’d comment on the weather in that terribly British way. But for the last few days, nothing, and yesterday, I knew he’d seen me.

  I’m about to start picking at a few stray green strands left in the soil when it hits me: the article that I’d done for the local newspaper a few days before, explaining that I had been diagnosed with dementia and all the work I’ve been doing since to raise awareness. Jim reads that paper. Could this be why he’s avoiding me? I need to know. I stand up and brush the last of the soil from my trousers, then I’m out of the garden gate, crossing the road towards him.