‘Seriously, you should have whatever colour you want,’ he says, squeezing it. ‘This is your home now, after all.’
Yes, it is my home. This room is mine.’
Yesterday, when William was out having physio, I sat in here and took myself onto a glorious, sun-drenched hillside. I inhaled the scent of baked fern and grasses and made a necklace from the wildflowers beneath my feet. I felt extraordinary afterwards; rested, revitalised, free. My counsellor – who’s luckily very patient with my still very inept usage of the eye-gaze tech – says that what I’m doing is meditating. I suppose she’s right, although I never knew that was what it was called. I have always just done it instinctively, but I know now that I was self-medicating with it, maintaining my mental health. Clever me.
I’ve only been able to get back to it recently, however. It took me a long time to find my way out of that dark tunnel. Antidepressants and counselling are an amazing combo, though, it turns out. With their help I’ve gone from feeling like the walls were closing in, to rejoicing in the four walls I now call home. And now that I’m emerging from that dark tunnel I found myself in, I feel like marking that transition.
Decades of decor not of my choosing has left me craving something different, something… out there.
I know! What I need is wallpaper. And on it I want big, bright, colourful butterflies. Hundreds of them, a whole kaleidoscope. I will tell Maggie later. I know she hates my to-do lists; I enjoy hearing her sigh when I read them out to her. She may perhaps be regretting her enthusiasm for the gene therapy now. It’s made so much extra work for her.
‘I’m going to watch Coronation Street. Want to come?’
I nod. William and I love to watch the soaps together; we chuckle over the outrageous storylines, the dreadful clothing choices, the unlikely affairs.
It was TV that first brought us together, actually. A few months back, I watched as a minibus drew up outside our bungalow and a young man in a wheelchair was lowered down slowly on its rear-lift, alongside a modest collection of boxes and suitcases. He was particularly notable because he was holding a TV screen on his lap. It was a large one, at least thirty inches across, and I couldn’t even see his face.
As he steered his way to the front door, effectively blind, I was worried that he’d drop it. He wobbles, you see. I’ve learned since that William has cerebral palsy, a physical disability, coupled with completely normal brain function, just like me. But unlike me, he can talk; his speech is slurred but audible. And that’s fine. Compared to the groans I’m currently managing to produce, he’s got the diction of Benedict Cumberbatch. Actually, I reckon he looks a bit like him, too.
He tells me that he had insisted on carrying that TV himself. He doesn’t trust anyone with his beloved Sonia, a Sony smart television. He’s spent most of his life living in care homes and he tells me that he’s discovered that the secret to his sanity is having his own set. Sonia was bought for him by his foster parents who love him with an intensity I admire deeply. They’ve looked after him on and off since he was a toddler. They visit him several times a week, and they always bring us treats.
It was a Saturday when he moved in, and as I steered myself to dinner that night, I heard the opening chords of the Strictly Come Dancing theme tune emanating from his room. I love Strictly, so it was a moth-to-a-flame situation. I simply couldn’t stop myself, and when I looked through the door in search of the screen, the man I’d seen arrive that morning suddenly had a face. And it was lovely.
William has short brown hair, a sexy smile and sparkling hazel eyes. He’s twenty-seven, so he’s technically a toy boy: result! And he loves music. When he spotted me gawping at the opening number of Strictly that night, he beckoned for me to join him. Before I knew it, we were attempting a wheelchair version of the first dance that night, which was a samba. Wheels clashed, brakes screamed, and laughter echoed off the walls and down the corridor. When the carers came to check up on us, I had hiccups from laughing so hard.
I don’t think of Jimmy much these days. It helps that I don’t see him often. He’s left the care home to do a foundation course, to help him get into university. I won’t pretend that watching him fall in love with Eliza was easy – it smarted, God, it smarted – but I’m glad for them both. She deserves to be happy. And I now realise that what I felt for him was simply a harmless fantasy, the equivalent of a teenage crush. I was exercising my emotional muscle, on a dummy run. And frankly, when I discovered that he didn’t like Take That, I knew it would never work. Eliza is welcome to him, and his strange, unpleasant obsession with R & B.
No, William is the real deal. He doesn’t mind my stubble or my wonky back; I don’t care a jot that he’s clumsy and prone to dribbling. We have accepted each other, warts and all.
Like my parents, I suppose. They are now making a decent go of it and I’m glad. I think their caring responsibilities meant that they focussed almost entirely on me, rather than each other, and I hope that me leaving home has changed that.
‘Chocolate?’
William has a box of Quality Street in his room this week, a gift from his foster parents, and we’re working our way through it. I nod and he gives me the strawberry cream, because he knows they’re my favourite. I tell you, the man is a keeper.
As the familiar Coronation Street theme tune floats around the room and I roll the chocolate around in my mouth, its rosy sweetness romancing my taste buds, I realise, with a start, that I am extraordinarily happy right now, in this moment.
I am happy, you know, and yet still not ‘normal’, not by any means. The gene therapy didn’t ‘cure’ me. I still look about as disabled as you could imagine. But William says that this is my superpower; I keep my abilities under wraps, putting them to use only rarely, shocking people around me. Take, for example, the self-important man who parked illegally in the only available disabled space at the supermarket last week. My computerised voice shouted ‘Wanker!’ at him repeatedly as he scurried back into his Range Rover and drove off at speed. Who knew you could teach an eye-gaze computer to swear? Me, of course.
It turns out, you see, that I’m funny and clever. I knew this (I’m also not very modest) but the rest of the world thought I was an empty shell, didn’t they? And that, for me, is the true benefit of the gene therapy and the hideous side effects I endured. I’m now able to ask for a back scratch, or to go to the toilet, or for some paracetamol if I have a headache – by mouth! Oh, I know, the luxury of it! And, crucially, I can also tell the carers if something hurts, as soon as it begins to hurt. So no more untreated bladder infections for me, I hope.
And do you know what? People laugh with me, and not at me, these days. I’m thinking of asking to go to college. Oh, and I quite fancy writing a book. It would be nice to put my overactive imagination to good use – and, let’s face it, my internal monologue, honed over the decades, gives me plenty of rich material to choose from.
Hang on a sec – what’s that? Oh my God, they’re playing ‘Pray’ on the juke box in the Rovers Return! I hear the familiar chords and, just like that, my heart swells, my pulse quickens and I’m cloaked in the warmth of my memories.
But then William wraps his hand around mine and I am certain, absolutely certain, absolutely determined, that my future will be even better.
Author’s Note
In June 1980, my parents celebrated the birth of their second child, Clare. A young professional couple with their lives and careers ahead of them, they were both relieved and delighted that she was, according to the hospital, ‘normal’ and healthy. Our mother Yvonne wrote almost exactly this in a memory book she’d begun just after Clare’s arrival. I discovered that book years later, locked up in a cupboard gathering dust, because it was an unwanted reminder of a period of innocence that was desperately short lived.
Clare was one of the first children in the UK to be diagnosed with Rett syndrome. It’s an incredibly cruel disorder. Although she gained some skills as a toddler, she eventually lost them all, and
her profound disability has shaped and buffeted all of our lives ever since. Bringing up – and living alongside – a disabled child is a unique mixture of joy, frustration, exhaustion and fear, and I hope that Patience helps shine a light on that experience. Growing up, I always felt that none of my friends really understood what my family and I were going through. I really wish a novel like Patience had existed then for us all to read.
For all of Clare’s childhood, our parents were entirely in the dark as to the cause of her disability. Doctors assumed it had a genetic basis, but had no proof. At the turn of the millennium, however, a scientist called Dr Huda Zoghbi in the USA published a paper pin-pointing the exact gene that was at fault – MECP2. This was followed in 2007 by groundbreaking research by a team at Edinburgh University led by Professor Adrian Bird, which showed that it was apparently possible to ‘reverse’ Rett syndrome in mice.
This development sent shockwaves through the global Rett community, giving families hope for the first time that their relatives’ condition might be treatable. It was also the spark that ignited my desire to write this book.
The gene therapy experiment threw up all sorts of questions for me. Would it be painful? Would Clare be frightened? And would she welcome it, or refuse it, given the choice?
Writing Patience allowed me to explore these questions, as well as to examine the potential of another recent breakthrough in the Rett world – eye-gaze technology. Many Rett families are now finding that its use, particularly when started young, is transforming their relationships. Unfortunately, Clare started to use it only recently and is still getting to grips with it. So for now at least, her inner-world remains a mystery, and that’s frustrating (for both of us, I suspect.) The unspoken communication we’ve developed over the years can only go so far. I realise now that one of my main motivations for writing this book was to try to inhabit her wonderful brain, and learn to see the world from her perspective. I yearn to know her every thought, and there’s so much I don’t know. But what I am certain of, however, is that she has a wicked sense of humour. Her eyes convey that perfectly.
At the time of writing, gene therapy for Rett syndrome is still at the research stage, but I have no doubt that it will eventually become a reality. I know that hundreds of thousands of Rett families around the world are waiting patiently for that day to come.
Victoria’s website: www.toryscott.com
You can follow Victoria on Twitter @toryscott and on Instagram @victoriascottauthor.
Acknowledgements
I started writing Patience more than a decade ago, and a great many people have helped me with it along the way.
Firstly, a huge thanks to my amazing family. It was my husband Teil who encouraged me to take the Faber Academy Writing A Novel course, led by tutor Lee Weatherly, in 2019. It was the push I needed to finally get on and finish the first draft of Patience, which had been sitting for years unfinished on my hard drive, simply entitled “Rett novel”. Thank you, Teil, for believing in me, and for making me so many excellent cappuccinos while I write.
Thank you also to my parents Yvonne and Chris Milne, for their support, love and supply of thick socks and a heated blanket to keep me warm in my author’s shed. Mum was one of my earliest interviewees for this book, and her real-life experiences have undoubtedly added to its power. Also, a big thank you for gifting me the money to do the writing course (alongside Auntie Juliet and David Artal) – definitely my most useful birthday present ever.
Secondly, I’d like to thank Louise Walters, whose excellent editorial advice set me on the path to finding my agent, the brilliant Hannah Weatherill at Northbank Talent Management. Hannah’s passion for Patience’s story won me over immediately, and her support, editorial assistance and friendship have been absolutely invaluable.
Thirdly, I’d like to thank Hannah Smith, my editor, and all at Head of Zeus. Their decision to publish Patience has genuinely changed my life.
I’d also like to thank the many author friends who gave me advice and support as I was writing, including the wonderful Clare Mackintosh, whose early encouragement meant a huge deal to me. Thanks also to the #Debut20 and #Debut21 crews – every novelist trying to write, edit and publish a novel in the time of Covid-19 deserves to be a bestseller.
I also want to thank the many people who read early versions of this book and offered great feedback – Vicki, Catherine, Theresa – as well as those I interviewed as part of my research, including the fabulous Dr Hilary Cass OBE. Her advice helped me to make this book medically accurate. Any errors that remain are all mine, I promise. Thank you also to those I interviewed who wanted to remain anonymous – your honesty and knowledge were much appreciated.
Finally, a huge thank you to my sister Clare, for inspiring me, putting up with me trying out make-up on her, and keeping my secrets.
*
To find out more about Rett syndrome, or to support research into therapies and work supporting Rett syndrome families, go to:
Rett UK www.rettuk.org
Reverse Rett UK www.reverserett.org.uk
Book Club Questions
1. Louise reflects that many medics and carers involved in her daughter’s life think she’s ‘nuts’ and Eliza acknowledges that people often refer to her mother as ‘superwoman’.How do Louise’s drive and determination make you feel about her?
2. Patience’s chapters are written in the first person, while Eliza, Louise and Pete’s perspectives are written in the third person. How did the use of the first person perspective affect how you felt about her character?
3. Eliza feels like she has to try to be the perfect daughter. To what extent do you think this view reflects reality? Could this ambition actually be entirely of her own making?
4. Pete believes he has been a terrible father to both of his girls. Is this true?
5. Patience’s Best Interests panel decides to give the go-ahead for the gene therapy trial, despite their concerns. Would you have made the same decision?
6. Now that you’ve spent some time in Patience’s head, how do you think society can better support and integrate people with disabilities into communities?
7. Despite being unable to talk to each other, Patience and Eliza still have a very strong bond. How do you think Patience’s disability affects their relationship?
About the author
VICTORIA SCOTT has been a journalist for two decades, working for outlets including the BBC, Al Jazeera, Time Out, Doha News and the Telegraph. She is a Faber Academy graduate and has a degree in English from King’s College, London and a Postgraduate Diploma in Broadcast Journalism from City University, London.
When she’s not writing, Victoria enjoys running incredibly slowly, singing loudly and travelling the world extensively. She lives near London with her husband and two children, and works as a freelance journalist, media trainer and journalism tutor. Patience is her first novel.
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