Praise for
‘I loved it so much, I couldn’t put it down. I wish I hadn’t read it so quickly, really, then I’d still have it to read! It felt completely authentic and was really interesting as well as moving, funny and romantic. I also want to take up tango. Utterly engaging from the first line to the last … impossible to put down’
KATIE FFORDE
‘It completely knocked my socks off – I devoured it in a single sitting! Wow. Just wow’
CLAUDIA CARROLL
‘A funny, heart-wrenching and life-affirming story that’s brave and beautifully written. And made me want to dance the tango. Bravo!’
ZOË FOLBIGG
‘If you loved Lost for Words you’ll be pleased to know that Ailsa Rae is exactly as warm-hearted and compassionate as you’d expect’
CARYS BRAY
‘Utterly wonderful … quirky, heart-warming and emotional … loved it!!’
LIZ FENWICK
‘I loved it so much … the thing that most struck me was the sheer human-ness of that moment after the crisis … It rang incredibly true’
SHELLEY HARRIS
‘A lovely, heartbreaking story of being given second chances. Her characters are so vulnerable, so unsure of themselves and at the same time so lovable. I love this unusual story’
BOOKSELLER REVIEWER
‘Butland writes with great wit, sensitivity and insight … It’s a love letter to life … A bittersweet story of love and loss, hopes and dreams, life and death – and what can happen when we dare to take a chance. It’s a joyously life-affirming tale that’s full of heart – balm for the soul, and utterly unforgettable’
GOODREADS REVIEWER
‘A delightful, happy read’
AMAZON REVIEWER
‘I could empathise with so much of [Ailsa’s] story and wanted to help fight for her, defend her, hold her hand, guide her … I have cried, laughed and loved every moment of reading this book’
GOODREADS REVIEWER
‘Her characters are so raw and real you become truly engrossed in them’
GOODREADS REVIEWER
‘This book left me tingling in a way that only happens when I know I’ve just read something special’
GOODREADS REVIEWER
This is a work of fiction. All of the characters, organizations, and events portrayed in this novel are either products of the author’s imagination or are used fictitiously.
THE CURIOUS HEART OF AILSA RAE. Copyright © 2018 by Stephanie Butland. All rights reserved. Printed in the United States of America. For information, address St. Martin’s Press, 175 Fifth Avenue, New York, N.Y. 10010.
www.stmartins.com
Library of Congress Cataloging-in-Publication Data (TK)
ISBN 978-1-250-21701-1 (trade paperback)
ISBN 978-1-250-21702-8 (ebook)
Our books may be purchased in bulk for promotional, educational, or business use. Please contact your local bookseller or the Macmillan Corporate and Premium Sales Department at 1-800-221-7945, extension 5442, or by email at [email protected].
First published in Great Britain by Zaffre Publishing, an imprint of Bonnier Zaffre, a Bonnier Publishing company
First U.S. Edition: October 2019
10 9 8 7 6 5 4 3 2 1
For Ned and Joy, with gratitude for their warm and honest hearts
Part One
October 2017
Nights Candles are Burnt Out
www.myblueblueheart.blogspot.co.uk
6 October, 2017
Hard to Bear
It’s 3 a.m. here in cardio-thoracic.
All I can do for now is doze, and think, and doze again. My heart is getting weaker, my body bluer. People I haven’t seen for a while are starting to drop in. (Good to see you, Emily, Jacob, Christa. I’m looking forward to the Martinis.) We all pretend we’re not getting ready to say goodbye. It seems easiest. But my mother cries when she thinks I’m sleeping, so maybe here, now, is time to admit that I might really be on the way out.
I should be grateful. A baby born with Hypoplastic Left Heart Syndrome a few years before I was would have died within days. I’ve had twenty-eight years and I’ve managed to do quite a lot of living in them. (Also, I’ve had WAY more operations than you everyday folk. I totally win on that.) OK, so I still live at home and I’ve never had a job and I’m blue around the edges because there’s never quite enough oxygen in my system. But –
Actually, but nothing. If you’re here tonight for the usual BlueHeart cheerfulness-in-the-teeth-of-disaster, you need to find another blogger.
My heart is failing. I imagine I can feel it floundering in my chest. Sometimes it’s as though I’m holding my breath, waiting to see if another beat will come. I’ve been in hospital for four months, almost non-stop, because it’s no longer tenable for me to be at home. I’m on a drip pumping electrolytes into my blood and I’ve an oxygen tube taped to my face. I’m constantly cared for by people who are trying to keep me well enough to receive a transplanted heart if one shows up. I monitor every flicker and echo of pain or tiredness in my body and try to work out if it means that things are getting worse. And yes, I’m alive, and yes, I could still be saved, but tonight it’s a struggle to think that being saved is possible. Or even likely. And I’m not sure I have the energy to keep waiting.
And I should be angrier, but there’s no room for anger (remember, my heart is a chamber smaller than yours) because, tonight, I’m scared.
It’s only a question of time until I get too weak to survive a transplant, and then it’s a waste of a heart to give it to me. Someone a bit fitter, and who would get more use from it, will bump me from the top of the list and I’m into the Palliative Care Zone. (It’s not actually called that. And it’s a good, kind, caring place, but it’s not where I want to be. Maybe when I’m ninety-eight. To be honest, tonight, I’d take forty-eight. Anything but twenty-eight.)
I hope I feel more optimistic when the sun comes up. If it does. It’s Edinburgh. It’s October. The odds are about the same as me getting a new heart.
My mother doesn’t worry about odds. She says, ‘We only need the one heart. Just the one.’ She says it in a way that makes me think that when she leaves the ward she’s away to carve one out of some poor stranger’s body herself. And anyway, odds feel strange, because even if my survival chances are, say, 20 per cent, whatever happens to me will happen 100 per cent. As in, I could be 100 per cent dead this time next week.
Night night,
BlueHeart xxx
P.S. I would really, really like for one of you to get yourself a couple of goldfish, or kittens, or puppies, or even horses, and call them Cardio and Thoracic. My preference would be for puppies. Because I love the thought that, if I don’t make it to Christmas, somewhere there will be someone walking in the winter countryside, letting their enthusiastic wee spaniels off the lead, and then howling ‘Cardio! Thoracic!’ as they disappear over the brow of a hill intent on catching some poor terrified sheep. That’s what I call a legacy.
9 October, 2017
Ailsa is alone when it happens.
‘We think we have your heart.’ Bryony, the transplant coordinator, is smiling from ear to ear, for once. Given that her usual message is No News Yet, that’s hardly surprising.
Ailsa feels her hands fly to her chest, as though to protect what’s in there, hold it before it dies. She makes herself move them to her lap. They are shaking. So is her voice.
‘A new heart?’ And then she feels the patched-up heart she has summon up the life to expand with hope: with permission.
Her head is a scramble of thoughts, the practical and the terrible. She nee
ds to be nil by mouth, so when did she last eat? Where is her mum? If she’s getting a heart, that means someone, somewhere has died.
Ailsa’s mother rushes in behind Bryony, breathless, bringing cold air and cigarette smoke with her. They fight the stuffiness of the room for a second before being absorbed. ‘They told me at the nurses’ station to get along here fast. What’s happened?’ She steps across the room; her hand is in her daughter’s. All Ailsa can do is nod at her, squeeze her fingers, because her throat has tightened and her mouth is drier than usual. She wants to say: I wish you had been here when Bryony came in. You deserved to hear it with me. But that’s silly, and unimportant, and anyway, you don’t get to choose these things. You get to accept them.
‘We need to have you prepped and in theatre in three hours,’ Bryony says. ‘Hold onto your hats.’ She flips open the file in her hand, picks up Ailsa’s notes from the bottom of the bed, and so it begins.
Or ends, depending on which way you look at it.
www.myblueblueheart.blogspot.co.uk
9 October, 2017
I’m Going to the Theatre!
It’s here! The heart is here! So it’s going to be a while until you hear from me. (Don’t panic. For the next couple of weeks, no news equals good news.)
I’m about to wrestle myself into my surgical stockings and say something that is Definitely Not Goodbye to my mother. I’m not going to tell you how I’m feeling, about the risks, about what’s about to happen, or about the donor family, or about anything to do with Mum, because if I even look at those feelings I don’t know what will happen to me, but I know it won’t be good.
I wrote this poll a month ago and I’ve been saving it. Posting it before today felt like tempting fate. But now, the dice have rolled. So here is the first poll of my NewHeart life. I’ll see you on the other side, my friends. Thank you for the voting, and the comments, and for cheering me on here.
What should I do when I’m well?
1. Climb something high. Not a ladder. A little mountain, or a big hill. A Munro, maybe. Somewhere I can see for miles and there are clouds and craggy bits and the odd sheep. Sometimes when I’m really poorly I close my eyes and think about those views.
2. Get a shock. I’ll jump into cold water or go on a roller coaster. I’ll watch some awful horror film or bungee jump off the Forth Bridge. My new heart will not be scared of anything. The heart I have now, on the other hand, took ill when I typed ‘roller coaster’.
3. Learn to dance. I’ve wanted to tango since I first watched Strictly Ballroom.
4. Switch my phone off. For hours. I’ll be fully equipped. No one will need to be worried about me. Don’t get me wrong, phones are great. But before I had to come into hospital, I did actually have to be glued to mine, in case of an incoming heart.
5. Queue for something. I might go to London and stand for six whole hours waiting to get ground passes for Wimbledon. I’d be the only person who was in it for the queueing rather than the tennis. The important thing is – I’ll trust my heart to keep me upright for as long as it takes.
I thought there would be a thousand things I wanted to do when I could, and my list would be full of Eiffel Towers and Taj Mahals. But those things feel too abstract right now. I don’t even have a passport.
I suppose what it all comes down to, really, is one thing: I’ll do what I feel like doing. I won’t worry about whether I can, what might go wrong, or what the implications are. I’ll be impulsive. Unmanaged. (As far as anyone on anti-rejection meds can be impulsive and unmanaged.) I’ll be normal.
My question is– which of these will make me feel most alive?
1 Climb a high thing
2 Get a fright
3 Dance, dance, dance
4 Switch off my phone
5 Queue
I’ll leave the poll open for a week, and look at it when I’m back from transplant-land. Because, mark my words, I’m coming back.
See you on the other side.
BlueHeart xxx
32 shares
256 comments
Results:
1 Climb a high thing
25%
2 Get a fright
19%
3 Dance, dance, dance
36%
4 Switch off my phone
14%
5 Queue
6%
12 October, 2017
Consciousness, it seems, is liquid behind glass: moving, ungraspable. Closing her eyes doesn’t stop the fairground-ride heave of it, but it makes it easier to bear. She sleeps again.
‘How do you feel?’ people ask, what feels like every fifteen seconds or so. ‘Ailsa? Ailsa? Can you hear me? How do you feel?’
She wants to say: I feel as though I’ve been kicked in the heart by a horse. I want to get out of here. Pass my shoes. Pass my eyeliner. Get me a five-year diary.
But her tongue is too tired to move and her teeth are heavy and gummed together, impossible to separate. Something hurts her throat. A tube? She tells her arm to move, to find out if there is a tube going into her mouth. Her arm ignores her.
She opens her eyes. Her vision fills with faces, smiling or questioning, and just the thought of trying to focus on them, to remember who the eyes belong to or to try to make sense of the words coming out of them, seems more impossible than flying. Flying, in fact, feels like something she can remember, something that she could do: if she could just untether herself from the blankets and the noises, she could float. She thinks she was floating, a little while ago.
Her fingers, back to babyhood, grasp involuntarily when other fingers touch her palm.
And she goes back to sleep, for what feels like no time at all, and when she wakes, it’s the same thing, over.
15 October, 2017
‘Fucking hell, Ailsa,’ her mother, Hayley, says, the first time she opens her eyes and doesn’t immediately feel them drawing themselves closed again, as though her lids have been replaced by bulldog clips. ‘I thought you were never coming back.’ Hayley’s smile is bright but she’s paper-pale; her eyes have the horribly familiar I’ve-been-crying-but-if-you-ask-me-I’ll-deny-it look. Ailsa can only see her mother’s face, her hair and the scarf around her neck, which is one of Hayley’s favourites, a yellow-gold silk rectangle that Ailsa chose for her the Christmas before last.
‘Is it…?’ she asks. Her voice is whatever the opposite of silk is, harsh and scraping.
‘It’s all good,’ Hayley says. ‘Six days since the operation. You were out for the count for the first forty hours, and you’ve been drifting up and down ever since.’
Ailsa nods, or at least thinks about nodding, but it doesn’t seem that her head moves. Her hair feels damp against the pillow. ‘Mum,’ she gets out.
‘I’m here, hen. I’ve been here all the time.’ Her mother’s tears are coming now, and she starts to talk, quickly, as though her voice will drown them out. ‘I told people not to come but they didnae take the blindest bit of notice. It’s been like Waverley Station in here some days. There’s a stack of cards for you, and chocolate, and somebody brought gin, but you’ll not be wanting that for a while, I should think—’
‘Mum,’ Ailsa says again. They are here. Finally, after all the years of illness – breathlessness, pain, caution – all the health checks and operations, all the conversations about the eventual need for transplant, all the ways their lives have been trimmed away at the edges because of all the things that Ailsa couldn’t do, they are here, in the wished-for place. She feels as though she’s going to cry; doesn’t dare, because if she heaves a breath, who knows what will happen to her new heart? But Hayley is at her side, and she takes Ailsa’s hand, and then she reaches over and presses her lips to her daughter’s forehead, and it’s all there, every hurt and fear they’ve shared, every hope.
Ah, here’s the nurse. Hayley steps away, and there are lights and tappings and questions. Someone wets her lips. There’s no tube.
‘Did I have a tube?’ Ailsa asks.
<
br /> ‘For the first couple of days,’ Hayley says.
‘My throat hurts.’ It’s a ludicrous thing to say, because every single part of her, inside and out, hurts. Her ankles seem weighted, her legs are stiff. The downward force of the bedclothes on her toes feels unbearable. Her stomach is surely full of some dark, thick liquid, tar or sour yoghurt, and if she moves, she knows it will spew from her. Her neck is pinched into place by tight muscles, her head sharp with pain, her eyes suddenly allergic to light. And as for her chest … She can’t even think about her chest. It feels – well, it feels exactly the way she had imagined it would feel if the sternum had been separated, her heart removed, another attached in its place, and then the bones wired back into position and the flesh sewn together again over the top.
Except that the imagination isn’t really equal to the reality. There is pain, yes, but confusion too. A memory drifts in: some reading Ailsa did about early transplant experimentation, the head of one dog attached to the body of another. That’s her. She’s that dog. Her heart – the heart – knows something has happened, but it doesn’t know what, and that sense of confusion is moving through her body with every pulse and beat. Her chest, her bones, are crying out: that wasn’t meant to happen. I didn’t sign up for that. I am solid. I am not to be opened. I am designed to be sealed, to keep what is inside me safe. You can’t just put another heart in here.
‘Don’t try to move, Ailsa,’ Hayley says, and she puts her palm against Ailsa’s forehead. ‘Breathe. You’re safe now. You’ve done it.’
But breathing feels like the worst kind of moving. Every stitch feels as though it’s stretching to the point of snapping whenever she inhales. She tries to breathe more shallowly, but the monitors give her away.
‘I feel as though I might break open.’ Her words barely scratch the air, but she’s heard. There’s quiet laughter from her mother and the nurse. It’s Nuala, the roses in the perfume she wears sweet enough to cut through antiseptic and cleansing gel. She thinks about saying that she’s not joking, but that would be a waste of what little power she seems to have. So she closes her eyes.
The Curious Heart of Ailsa Rae (ARC) Page 1