One Last Thing: Epilogue

A special treat for my subscribers

Today is publication day for my final book with Wendy Mitchell, ONE LAST THING. And as a publication day treat, I wanted to share with you the epilogue to the last book, which really is an epilogue for the trilogy of books, SOMEBODY I USED TO KNOW and WHAT I WISH PEOPLE KNEW ABOUT DEMENTIA.

I remember the morning I penned this, it felt so important to me to get it right as it would be the last time I would embody Wendy’s voice, so I sat there with a box of tissues as the idea for it had been nagging at me for weeks. I had asked Wendy, as homework, if she would go out and walk the old route she used to take around York when she lived there and, because after six years of working together we now read each other’s minds, she said to me: ‘Oh I did that last week!’

‘Did you take any notes?’ I asked, hopefully.

‘Yes, I’ve got a blog about it next week.’

That blog gave me material for my idea, and so here it is in full, the epilogue to not one book by Wendy Mitchell, but all three. I hope you enjoy it – and don’t need too many tissues!

The world was yet to wake as I left my front door that morning.The trees were black, silhouetted against a deep inky-blue sky. It is not unusual for me to leave my house while others are still blanketed in unbroken sleep – I remember that.

Crossing the threshold of my front door represents a break from my constant companion these days. I leave dementia at home as I turn the key in the lock, leave it padding around the carpet, pottering from room to room. When my first footstep hits the cold morning pavement, when I feel the still of the air on my cheeks, it is an escape, it is autonomy. I am still self-sufficient.

Throughout the summer, I had heard fewer birds than normal, the dawn chorus more dim than the usual din, as if nature had turned down the volume. I had told myself that the drought had forced them to migrate to somewhere with more rainfall, in that way that nature adapts to climate – in that way we all do, often unwittingly – yet that morning in particular, the trees were filled with their welcome chatter and as I set out down the lane, I smiled to hear them once again keeping me company.

I decided to go to the far end of the village first. I trundled by the playing fields, along the narrow track to the open field at the bottom. It was still too early for sunrise, but the indigo sky was lightening and the clouds were gathering lilac frills; there was light somewhere breaking through.

I headed along the back lane and turned into the gallops, where a heavy low mist hovered over the field. The horses were just waking and looking for breakfast, and somewhere on the horizon the sun was slowly keeping its promise to break into the day, just like it does every day.

I stood at the edge of that autumn field, my cheeks cold with the first breaths of winter, the camera in my hand clicking to capture all the colours that bleached the morning as the sun started to rise where the hills met the skyline. I waited for that moment, for the first golden threads of a new day to pierce those clouds, and then there it was in all its fiery brilliance. A new day – a gift.

I felt a burning desire then, a need to revisit an old haunt, to walk another path I was once so familiar with, to feel the track under the soles of my feet, to see if I could still remember.

I caught the early bus to York that morning as the world woke up, as people new from sleep mounted the bus, still fuzzy from dreams. I watched them as they took their seats around me, they stared out of the window, or mostly at their phones, the world rushing by, on automatic, as nature on the other side of the glass tried her best to seduce them with her beauty. It’s often easy to miss.

I know I used to.

I disembarked the bus in the centre of York and let my feet lead the way, hoping that I could still flex that muscle memory – was it there, imprinted within me?

There were more people in York: they hurried to get to work, heads down, bustling past, unlike me with my walking stick. I wanted to turn then, to go home, back to safety, but the thought of that silent companion that awaited me behind the door was enough to convince me to keep to the path.

I headed towards the river, past pubs that seemed so familiar – I saw a woman sitting at one of the outdoor tables with friends, yet when I looked back again, she was gone. I went further into the city, following tree-lined paths, one split into two – one for pedestrians, one for cyclists – and then I saw her again, just a split second as she rushed past on her pink bicycle. I knew her.

I was beside the water now. We walked together, me carried along by its flow. It was too complicated these days to go against its current; better to drift with it, see where it took me, past the moored boats – I remember them – and then yes, I remember that blue bridge. I stopped and stared, let the river carry on without me for a few moments.There is nothing particularly beautiful about the design and structure of that bridge, yet it greeted me like an old friend.

I caught up with the river, one foot in front of another, then through the trees I caught sight of it – the Milennium Bridge. I soon reached it, and when I did, my feet on that old familiar tarmac, it was another day, a sunny one, and the sky was filled with the sound of chatter of people, not birds, of children watching the swans drift by with delight, and parents handing the last of old bread crusts to throw to them. I had a flask in my hand and was joining the crowds to sit and watch the world go by, just as I always had.

There is a wooden plinth that runs the length of the bridge, and so I sat down there, and that’s when I saw her again. This time she was running, a smile on her face, the wind in her hair – she looked so carefree, so happy. I knew her instantly.

‘Morning,’ she said as she passed.

And I smiled at her as she went and wondered if I should tell her that it will be just over this bridge in a few moments that she will first fall, that she won’t know why, that she will stumble to the doctors’ surgery, all bloody and bruised, and the nurse who patches her up will joke about accidents out running, that they will both laugh it off, that’ll she’ll think it’s a one-off. But in the back of her mind, she will already know. No, perhaps it’s better to let her run on, unhindered by the future.

And yet, there are other things I could say... that it won’t be that brain tumour that you first fear.That I understand why, at fifty-six, that is your first thought – why else would your brain stop talking to your legs? That it will be another eighteen months from now that they finally tell you, when you sit alone in a room with a consultant who explains what this disease is that has invaded your brain, that it was nothing you have done, or haven’t done; that you were simply unlucky.

Unlucky. You’ll tell yourself that word too. But I want to tell you a story with a different ending to the one you’ve already written in your head. I want to tell you that although you’ve never heard of young-onset dementia, they will soon be three words that slip so easily from your tongue. I want to tell you that what will at first feel like a curse will in many ways bring you joys you simply couldn’t imagine – yes, joys.

I know you’ll need time to come to terms with your diagnosis, I know for a long time you will think it’s the end – it will be so typical of you to get all your paperwork together – but will you believe me if I say that it will just be the beginning? A new beginning. Yes, it won’t be without its challenges, and there will be lows – there’s no getting away from that – but there will be highs too. Quite literally, though – I’ll come to that.

First your two girls – the two most important people in your life – the first thing your mind will rush to is the day you no longer know them. But let me tell you: you always will – love is a bond that even a cruel disease like dementia cannot break. I know the thought of forgetting their birthdays is impossible to you now, but it will be okay, you will find a way – you know how that has always been your mantra? Well, now will be the time to employ it more than ever. You will set an alarm on your iPad to make sure you don’t forget; you will make yourself useful to them in inventive ways you could never imagine; there will be so many happy times ahead, and they will make you more proud that you can ever know right now.

I know how you tell yourself now that the only person you can ever trust completely is yourself – I know people have hurt and disappointed you in your life, which has made you come to this conclusion – but I’m asking you to trust me now.

You’ve always been so private, not aloof, just happier in your own company, but let me tell you of this new person you will become. It will be one of the first things the girls notice about you: how outgoing you suddenly are, how willing you will be to share your story – but that will be out of necessity, because you will be so stunned by the lack of awareness about the disease, not just from members of the public, but unfortunately more from the medical profession itself.

You will be an educator, a campaigner, an inspiration to many, many people who will be just down the road from you in their own diagnoses. Yes, you will sink into a deep depression when you are first diagnosed when the doctors tell you there is no hope, but once you pull yourself out of it, you will light the way for others. You will prevent them suffering depression, you will receive an email from a lady who will tell you that where she once feared her own diagnosis, she now says: Bring it on, and that, and so many other emails you will receive from people, will make it all worthwhile.

I know you can’t imagine all this, not right now, but trust me.

You know how you’ve always liked to be organised? Well, that will now pay dividends. There will be countless times when you will evade this uninvited guest in your brain, simply through tricks that you will employ to help you organise your days, travel, and, most importantly, live alone, because I know – I know – how much you value your independence. When you forget how to tie your shoelaces, Sarah will find you elastic ones. When you walk through a door in your new house and forget where it leads to or where you’ve just come from, you’ll get a screwdriver and take the damn door off. No problem will be insurmountable to you – in fact, you’ll revel in the challenges dementia brings.

You only have a handful of close friends now, but this new disease will introduce you to so many more dear people that you will love as if you have known them your whole life. Innovations in Dementia – remember that name: you will meet wonderful, dedicated people there who you can trust.

I know there are times now when you switch off your light at night and the room is flooded with darkness that makes you ache with loneliness, but what if I told you that you would never feel lonely again, that the community you are about to meet will keep you company throughout this disease, that in those sleepless nights you will only have to open your phone and find a friend on social media. Yes, social media; long gone will be that technophobe you – you will embrace technology: your smartphone, your iPad, your camera. You will start writing a blog just a few weeks after your diagnosis that will be read throughout the world.

I know now, as you run over this bridge, you’ll be like everyone else, wishing your working week away, living for the weekend, and it pains me to have to tell you that you won’t be able to continue working. The world will not have yet caught up with how useful people with dementia can still be; that they don’t lose all their skills overnight simply because they’ve been diagnosed with a disease in their brain; that just like we have to adapt, workplaces will need to learn to do that too; but you will help people to learn that. You will help employers to support their staff; you will help train nurses to look after their patients; you will advise hospitals and care homes on designs for people with dementia; you will offer up your brain for academics to poke and prod (okay, that bit might happen after you have died!), and you will be rewarded for all this work with two honorary doctorates from two universities, which will make you want to burst with pride.

There will be bad days, I can’t lie to you, and as the disease progresses, they will become more common. In a few months’ time you will step out of your office one day and not recognise any of your surroundings. You will stumble along the corridor to the loos, hoping no one stops you on the way to chat, because you have no idea who anyone is, and you will lock yourself inside a cubicle and wait for that fog to lift, for the world to come back into focus – and it will.

But there will be a day when it won’t, and it may be many, many years down the line, and even I don’t know when, and that will be the only thing left that scares you. You will plead with people to understand that, and they will tell you that you will be happy even when that happens, even when you go over the edge, but they don’t know you like I do – they don’t know that even if I stopped you now on this bridge and asked for your thoughts on assisted dying, you’d give me the same answer: that people should have choice, that people shouldn’t be made to suffer. The world still has a lot of catching up to do. You’ll hope the last book you write will help people to realise that.

Just hold onto the fact that, for now, those fogs will lift. Likewise, try not to mourn for too long the things you will need to let go of – other things will come and replace them. I can almost smell that lemon drizzle cake you’ve left cooling on the worktop at home, and though you won’t be able to follow recipes any more, or decorate your own house, or drive your beloved car, I hope you will see that these other gains I talk about will go some way to making up for all the losses.

You’ll replace driving with walking, and you’ll walk for miles each day. You’ll still travel to your beloved paradise – the Lake District – though not with your best friend, Sylvia, and I can’t explain why now, because some things in the future are better left untold. Wait for that story to unfold and be brave – for both of you: some of life’s twists and turns are better met in the moment, but you will cope, just like you always have.

You’ll find a wonderful little B & B in Keswick called Appletrees and there you will be looked after; they’ll even put a pillowcase over the TV in the corner, so the black screen doesn’t look like a big hole in the wall to you, because that’s the other thing I need to tell you about dementia – it’s not just memory. It changes the way you walk (which is why you’re about to fall for the first time), the way you hear, what you see (you’ll adopt a thirty-minute rule to see if things you’re seeing are really there, or are just hallucinations) and even how you taste. And that’s one thing I do need to break to you: your beloved Yorkshire Tea will be lost to you, and even in spite of all the other losses, I know you’ll find this one of the hardest to let go of. You’ll try all sorts of other teas, but nothing will replace that ‘hug-in-a-mug’. But you will be content eventually just to sit with a weak brew between your hands, simply for the comfort and companionship of it.

Dementia will bring you so many adventures. You know how you enjoyed the Three Peaks Challenge?Well, what if I said that would be nothing compared to some of the other things you will do. If I said to you now that you’d jump out of a plane and parachute back down to earth, I know you would be horrified, but there we are, life holds surprises, both bad and good (did I mention that you will meet a Hollywood superstar and she’ll mention you in her BAFTA award acceptance speech? Perhaps I’ll save that story – don’t want you getting ahead of yourself).

You’ve crossed the bridge now, and I can only see the back of you as you disappear almost out of sight. Sometimes I feel sad that I’ve lost you, that I resemble you so little, but then the glass-half-full person is a trait we still share and that’s a comfort, and our love for our daughters: that’s one thing we will always have in common; that is something this disease will never take from us. You won’t be scared of anything any more, because the worst thing that could possibly happen to you is dementia and that’s already happened. But when you read the words that I have written here... are you sure it was the worst thing that could happen to you?

Am I sure?

You’re about to take that last step off the bridge now, and before you go, I must tell you one last thing. You will meet a writer called Anna Wharton and she will tell you that you have a book in you, but even she won’t know then that it will actually be three, and that two of them will be Sunday Times bestsellers, and all that wisdom you have accumulated from this life-changing event you will commit to those pages with her help, and that will be your legacy. That is what you’ll leave behind, and while you’re still alive, it will be life-changing.

There, you’ve just fallen, I can see you on the ground now. I wish I could get up and help, but look, you’re already doing it yourself, stumbling a bit, but you’re up on your feet, you’re brushing yourself off, you are turning to look at the pavement, wondering where you slipped. But I can tell you there is nothing there: it is this disease inside your brain that made you do it.

You haven’t got long to wait to find that out, but when you do, promise me you’ll remember everything I have told you...

I got up from my seat with my walking stick, I checked my watch and saw there was a bus in thirty minutes. I decided to go back the way I had come. For a moment, I turned to see that woman, but there was nothing there, nobody at all – yet I said goodbye to her anyway, that somebody I used to know.

Here we are on publication day of Somebody I Used To Know in 2018