I FaceTime Gemma. ‘I don’t know what to do!’
She must see my panic. Her voice is calm.
‘It’s OK,’ she says. ‘Can you get to Doncaster from Leeds?’
‘I don’t know.’ I look around. The station seems busier than when I last looked. ‘Oh wait, yes. The board says Doncaster. It’s due soon.’
‘OK, go and get that train. Text me when you’re on it and text me when you get there.’
I end the call, following her instructions when I’m on the train, when I relax into my seat, when I’m on my way home.
She’s there waiting for me. My saviour.
It shouldn’t be this way round, though, I shouldn’t have to be rescued by my girls. When I was first diagnosed we were all in the unknown. Limbo hadn’t arrived then, as we didn’t know what to expect. Now we live there.
There was the time when I went to visit a hospice and my daughters were expecting me to be home by 6 p.m., but I got chatting. By the time I looked at my phone I had thirteen missed calls from them and umpteen messages. Now they use an app with GPS tracking so they can see if I’m exactly where I’m meant to be. But it just means I get random text messages saying: What on earth are you doing in Durham?
A few weeks ago I went shopping with Sarah. We got everything we needed and stacked our bags in the boot. I went to put the trolley back, telling her I’d only be a few moments and somehow got sidetracked with the thought of buying more compost for the garden. By the time I came out of the store, wheeling two more heavy bags, Sarah was terrified.
‘I didn’t know where you’d gone,’ she said, with a worried look I knew so well, the same that would have been plastered on my face had the girls wandered off when they were young.
‘I just went to get more compost,’ I said.
But Sarah didn’t know that, and I’m sorry that she has to worry so much about me. The girls mostly see the best of me, or that’s what I like to think. They rarely see me sad, because seeing their faces instantly makes me happy, the love I feel for them covering up any confusion I’ve had that day, immediately taking away any hurt or emptiness. Perhaps, then, it comes as more of a shock to them when things go wrong and I suddenly need their help.
It wouldn’t do any of us any good to wrap me in cotton wool, though. I didn’t do it when they were teenagers, as a parent has to let their child make their own mistakes; it’s how they learn what they can and can’t do. Perhaps my girls think the same about me. They’re just there in the background, waiting for the call.
The images come so clearly sometimes: a flashback to another era, a file taken down from the shelf from so long ago. You never know which it’s going to be. This time you’re just months old, chubby legs topped with a towelling nappy, tiny digits gripping the bars of the cot, and beyond, the flickering flames of the fire. You close your eyes and feel the warmth of it as if it’s only yesterday. Time means nothing; you’re a baby again, just for a moment. And then the fog lifts and you’re back in the now.
The sun shines through the curtains, a new day peers in from the window. I try to sleep, but it’s impossible. Not today, of all days. Instead I get up. I’m on the village bus into town for something to do to fill the time, and I look around the shops, stopping for a cup of tea, knowing anything else in my tummy will just spin around and around like a washing-machine drum. Today Sarah, Gemma and Stuart have paid for me to have my first ever flight in a glider. I look up at the perfect sky above me, knowing that’s where I’ll be in a couple of hours. I’d been so worried it might be cancelled due to bad weather, but there is not one cloud to break the blue. By the time Gemma and Stuart arrive to collect me, I’m home and standing at the door, coat and bag in hand.
‘Are you ready?’ Gemma asks, a big smile on her face.
‘Yes. I can’t wait.’
Sarah meets us at the airfield, me bouncing with excitement, the girls far more nervous. We start by watching a safety video.
‘You’ll need to watch this to remember how to operate the parachute in the case of an emergency,’ the instructor says seriously. I feel the girls’ eyes on me. I look back at them with a blank face that agrees we’ll keep this to ourselves, that there’s no chance I’ll remember, and so none of us say a word. I must have done a good enough job at convincing him I’ve taken it all in, though, because then we’re driving round to the airfield where other gliders are taking off around us, towed along the tarmac by a regular plane, the glider pilot releasing the rope once they’ve reached the right altitude. My stomach does another somersault and I’m grateful that I didn’t have breakfast this morning. Suddenly I notice one of the instructors pulling Sarah and Gemma aside, not far enough out of earshot for me to overhear: ‘Is your mum capable of this?’
The girls look over to me, and for a second I feel sad. I hate people talking about me rather than to me.
‘Why don’t you ask Mum?’ they suggest. The sadness evaporates instantly.
‘Don’t worry,’ I laugh. ‘I’m not going to freak out and grab hold of the controls.’
The mood lightens and everybody laughs.
A few moments later it’s my turn. The pilot straps me into the front seat of the glider and climbs into the seat behind me. I look around the small space I’m in; there are a couple of levers and controls.
‘You must remember not to touch this lever,’ the pilot says. ‘And keep your fingers away from the hinge by the window.’
I make a mental note to myself, wishing I’d packed a Post-it note and a pen in my red haversack.
‘Remember what you need to do in an emergency?’ he asks. ‘Just like on the video.’
I nod automatically. ‘No problem,’ I say, trying to resist the image of me freefalling to the ground from 5,000 feet. But what a way to go, I smile to myself.
The aircraft is attached to the front of the glider, and I wave and smile at Sarah, Gemma and Stuart, who are all looking far more nervous than I feel.
‘You happy to go?’ the pilot says behind me, and then we’re off, the plane taxiing towards the runway, the rope pulling taut and us following gently behind. Then, just like any other flight, we’re picking up speed, the world is whizzing by and then slowly I see the ground disappearing beneath us, and we’re up in the air, climbing higher, the sound of the aerotow plane’s engine in front of us. As we climb, I look out of the window down at the patchwork pattern of the fields below us. I turn back in time to see the rope between us and the plane releasing, our tow flying off into the distance and then there we are left, gliding through the air in almost complete silence, just the soft sound of the wind rushing by and the clouds above me looking almost close enough to touch. I’d expected more noise, but this is so peaceful. I spend my time on terra firma trying to quieten the world down, and yet up here, I find silence.
‘You OK?’ a voice suddenly says behind me.
‘It’s wonderful,’ I say, mesmerised. I look down at my hands in my lap and see my phone strapped to my wrist. I pick it up and start taking photographs, first a selfie of me, smiling away, and then one with the pilot – looking very serious – in the background.
‘Do you fancy circling a bit if we find a bubble of air?’ he asks, seeming more relaxed now he can see how much I’m enjoying it.
‘Oh yes,’ I say, grateful for any extra time we can stay airborne. We go up and up, climbing 300 feet a minute. Below me bright yellow rapeseed fields smile from the ground, small towns look more like model villages, and look; there’s a house hidden inside a copse – the world giving up its secrets to us. Then I spot a familiar red-and-cream bus on a long straight road, the same one that I’ve taken to York so many times. I press my head up against the window; the bus looks so tiny from here, it’s as if I could pick it up from the road with my forefinger and thumb. I snap pictures all around, the smile never leaving my face until I feel a slight drop in altitude. I check with the pilot – it’s time to head back down to earth. The tiny buildings grow larger and larger as we approach t
he ground, and then we’re there with a surprisingly smooth landing – a simple thud and a little bump. I greet our return to earth with a happy sigh.
A red tractor pulls us along the airfield, towards waving arms: Sarah, Gemma and Stuart, their eyes alight, excited to hear what it was like. Will I remember? Can I recall every wonderful moment? I have my photographs, my bird’s-eye view of the world. I promise this is a memory that dementia will never steal from me. Have I said that before?
We celebrate with a cup of tea, and then it’s time to leave. What’s next? Who knows? All I do know is that I must grab these opportunities with both hands while I can. On my way out, I spot a wing-walking poster …
A good day can turn foggy at the turn of a page. It happened today mid-type. The first I knew was when my head was struggling to keep up with the words in front of me. The haze appeared at first, as if I was driving through patchy mist. Everything slowed right down – time and actions – and my thoughts became more fragmented, like wisps, not fully formed. I know what to do now. I’m prepared for this. I need to lie down, or simply sit still. I make it to the bedroom and climb into bed, pulling the duvet over my head, blocking out the midday sun that shines blindingly through the window. And with that the outside world has gone. The me I’m left with is just a shell. The positive me is somewhere else, and instead a numbness, an emptiness replaces my busy, creative mind. I want sleep to come and take me away, to pour its milky anaesthesia through my brain, washing away the mulch and leaving a sunnier day. I glance at my clock but the numbers make no sense …
I wake. It’s still light. Where have I been? The sun is shining into my room, but the duvet is pulled up to my chin. I’m hot and, I realise, fully clothed. I push the duvet from me and lie there, still. I hear music on the radio, but I don’t recognise the song. It’s a few more moments before I turn to the clock beside my bed: 15.25. Monday 10 April 2017. How long have I been here? When did the fog come down? There is a man speaking – the DJ from the radio. I try to catch his words as they float around the room like butterflies. I pin one, then another and another. It’s Steve Wright. A familiar voice. I’m coming back.
I lie there, allowing my head to sink into the pillow, as the trees on the other side of the window grow more familiar to me. I catch, inch by inch, blue sky between branches, and then birds. Time to move. I shuffle downstairs to the kitchen and empty some porridge into a bowl. I add the milk and flick on the microwave. I unpeel a banana and place it next to the bowl, ready. There is no signal from my stomach to my brain and I’m not hungry, but something tells me that fuel will restart the engine. The microwave hums, the sound blending into the kitchen units.
I see birds outside the kitchen window. I wander out to the garden to fill their feeders, but I shiver. There’s a chill in the air that the sun can’t warm, and so I head back inside to the kitchen and see a peeled banana on the worktop; it reminds me of the porridge. I open the door to the microwave and find the sides of the bowl dribbling with milky oats. Too much milk or the wrong time set? One of them, for sure. I grab the rolled-up tea towel already waiting on the side and fold it round the bowl. I slice the banana on top and head back upstairs. Back into bed, the sides of the bowl warming my hands through the tea towel. The radio is playing the Beatles’ ‘All My Loving’, a favourite blast from the past. I eat, but I’m not hungry. The tea towel is stuck to the sides of the bowl. How did that happen? It must have spilt in the microwave.
I finish my porridge and put the bowl on my bedside table. Reaching for my iPad, I turn it on. I know the process to restart myself. I open Solitaire and tap the cards one by one, slow at first, missing my chance to move them, and then slowly it comes back to me: red ten needs black nine; two of hearts goes on top of the ace.
I’m back, I think. Almost …
ACKNOWLEDGEMENTS
First thanks must go to Anna Wharton, without whom this seed of an idea would never have grown. It was such a learning process for both of us, but through all the learning was so much laughter – via emojis – and so many shared emotions. Sometimes people enter your life and you just know they’ll be there at your side from that moment on, and Anna is one such person.
To Jon Elek of United Agents, a special thanks for seeing the potential in our book and for supporting us so well. Thanks of course to Alexis Kirschbaum for having the foresight to take on the mantle of publisher, and to all the wonderful staff at Bloomsbury Publishing, including Sarah Ruddick, Emma Bal, Natalie Ramm and Jasmine Horsey.
To the Alzheimer’s Society, I want to say thank you for giving me some amazing opportunities; and to many others, too numerous to mention, for asking if I wanted to be included in their work.
I’d like to say a special thank-you to Emily and Damian for setting up Minds and Voices in York – not for monetary gain, but simply because they felt there was a need for people with dementia to meet each another. Without this access to other people with dementia and their love and enthusiasm early on, I might have been in a very different place now.
But most of all, I’d like to thank the two most precious people in my life: my daughters, Sarah and Gemma. Without their support, understanding, laughter, love and willingness to learn with me, I would have been totally lost and very lonely.
Please feel free to read my blog on living with dementia: www.whichmeamitoday.wordpress.com
Or follow me on Twitter:@WendyPMitchell
A NOTE ON THE AUTHOR
WENDY MITCHELL spent twenty years as a non-clinical team leader in the NHS before being diagnosed with young-onset dementia in July 2014 at the age of fifty-eight. Shocked by the lack of awareness about the disease, both in the community and in hospitals, she vowed to spend her time raising awareness about dementia and encouraging others to see that there is life after a diagnosis. She is now an ambassador for the Alzheimer’s Society. She has two daughters and lives in Yorkshire.
First published in Great Britain 2018
This electronic edition published in 2018 by Bloomsbury Publishing Plc
© Wendy Mitchell and Anna Wharton 2018
Wendy Mitchell and Anna Wharton have asserted their right under the Copyright, Designs and Patents Act, 1988, to be identified as Authors of this work.
Every reasonable effort has been made to trace copyright holders of material reproduced in this book, but if any have been inadvertently overlooked the publishers would be glad to hear from them. For legal purposes the Acknowledgements constitute an extension of this copyright page.
All rights reserved. You may not copy, distribute, transmit, reproduce or otherwise make available this publication (or any part of it) in any form, or by any means (including without limitation electronic, digital, optical, mechanical, photocopying, printing, recording or otherwise), without the prior written permission of the publisher. Any person who does any unauthorised act in relation to this publication may be liable to criminal prosecution and civil claims for damages
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Somebody I Used to Know Page 22