The Curious Heart of Ailsa Rae (ARC)

by Stephanie Butland

  Emily and Hayley are sitting with Ailsa, so it’s hard to concentrate in the same way during the play; Ailsa wants to look at them, read their faces, whisper secrets. But she doesn’t. She bellows and howls in the fight scene, the way she always does, and then she feels every one of Romeo’s lines, in the filaments beneath her skin, in the second before he says them.

  Soon they are at her favourite scene, the pre-party huddle of Romeo, Benvolio and Mercutio, and she is lulled along in the familiar rise-and-fall of it, the dynamic of the three actors, when something changes. Seb, instead of responding to Mercutio’s teasing with a poke in the chest, gets up and turns away. Mercutio, after a heartbeat, turns too. Seb turns his back on his fellows and, looking at Ailsa – and only at her, she can see it, and so, it seems, can others, as they follow Seb’s eyeline – says, ‘Is love a tender thing? It is too rough / Too rude, too boisterous, and it pricks like thorn.’

  Mercutio gets to his feet and cuffs Romeo around the head – it looks as though it’s more than acting – pulling him back to the central huddle as he says his next line.

  And then it’s back to business as usual, Romeo lovelorn, Seb word-perfect and focussed on his fellows as he has been in every other performance. Until, as they stand and move, he mispronounces a line: ‘Fearfully begins my bitter fate,’ he says, and if the others notice, they don’t flicker.

  Ailsa notices.

  Of all the lines in the play, he would never, ever get this one wrong.

  Ailsa inhales, feels the perfect four-four beat of this gifted heart. She has made mistakes. She has hurt people she loves. She can walk away, or she can be brave.

  Benvolio calls for the drum, the rest of the actors come from behind the archway, masks already covering their eyes, and Mercutio, Benvolio and Romeo disguise themselves too.

  It’s time.

  Ailsa puts her own mask on. Guy is on his feet, opposite, stepping towards the stage, taking a delighted Nurse in his arms; behind her, Ailsa hears Venetia’s chair scrape as she stands, and to her right, Eliza snakes her way towards Tybalt’s beckoning. Ailsa stands, takes a breath, steps forward, remembering to smile, raise her chin (‘You’ll only look ridiculous,’ Roz says, ‘if you go half-cocked at it.’).

  And Seb is there: a bow, a smile, a question in his almostperfect eyes and his arms ready for her. She puts her hand on his shoulder and feels where her thumb fits into his collarbone, the way his fingers spread across her back, strong and true. His other hand laces hers, and he pulls her closer. She waits for the nervousness but it isn’t there. Not this time. Because all she needs to do is keep her heart opposite his heart.

  Part Ten

  October 2018

  Sweet Division

  www.myblueblueheart.blogspot.co.uk

  10 October, 2018

  Happy Anniversary

  This time last year, my mother and I were looking at each other and at the transplant coordinator, trying to work out if we’d just heard what we thought we’d heard.

  The heart was a match. We needed to get my fading blue carcass down to theatre as quickly as we could, and prise my ribcage open, and wait for the swap. Fingers crossed, I would wake up with a chance of seeing 2017 out. Fingers crossed, I would wake up.

  There wasn’t really time to be scared, or to think beyond the next eight hours. And anyway, that would have been a waste of thinking, because I had no idea of what it would be like, to be Ailsa instead of BlueHeart. To be normal.

  In a way it will never be over. I’ll never stop taking the tablets. I’ll never be unscarred. That time I lost to hospital-waiting, hospital-hoping, it’s all gone. I won’t get it back.

  But, here I am. I can dance, after a fashion. I’ve a job. I’ve a career plan. I’ve joined a hill-walking group (over and above the fact that anyone who lives in Edinburgh is, by definition, a member of a hill-walking group) because I will climb a mountain one day. My friend Jacob is getting married next year, which means I need a passport to get to the wedding in France.

  Here’s something I realised, this summer. Being ill for so long, waiting for a heart for so long, made me a permanent child. Today – a year on from transplant day – I’m going to admit it: I’m an adult.

  And I’m going to be honest: I don’t like it as much as I thought I would. It’s not as thrilling as I’d hoped. In particular, this ordinariness business can be quite – ordinary. You might say dull. And the biggest bit of growing up I’ve had to do is admitting that there are times when I quite miss being blue. Not all of it. But the way it made me special.

  I’ve forgotten, sometimes, that I was special like Juliet was special. She had death hanging over her from the start. That’s no way to live. Everything tastes of ashes.

  Here’s what I’ve been mulling over, since the Festival left town and I sat down in my flat and did some serious planning. There’s no such thing as ordinary, just like there’s not really a normal. And there’s no such thing as special, either. Or rather, we bring our own special. We make it. We make it when we dare and we make it when we ask for help. We make our lives special when we choose to forgive and move on, and not to make ourselves the centre of everything. We make specialness by trusting to the music and the dance.

  I know blogging’s been sparse these last few weeks. Life’s been full on and I’ve needed a bit of time, so I’ve taken it.

  I’ve been thinking.

  I’m working more hours.

  My hospital checks are going down to fortnightly.

  I’m going to be working with the Lennox Life Trust (have you got your calendar yet? Click here) to set up a support and mentoring scheme for post-transplant patients.

  I’ve applied for a passport.

  I’ve asked my mother to come away on holiday with me for a week in January. We’re going to go and get warm somewhere. I’m going to lie on a beach in a bikini and the world can look at my scar and the wobbly bit of tummy that’s determined to stay, and it can judge if it wants to. What the world thinks of me is irrelevant.

  I’ve decided I want to do a Scottish law conversion and I’m applying for that. I know you said OU, but I think working in Scottish law will suit me better. I’m grateful for your thoughts – but I trust Apple and I trust my gut, so I’m going with them.

  I’m looking for some voluntary work to help me get a bit of legal understanding.

  I’m getting on with my life. I have good days and bad ones. There are people that I miss and times when I think I didn’t deserve this Apple of mine. Which is probably normal. Which makes me glad.

  There are going to be some changes on the blog, too. I’m probably going to move it to a new site with a new name, and I’m going to move the focus away from me and towards the broader health and transplant world. (And I’m going to make that more exciting than that sounds.) The way I’ve done things has outlived its usefulness. It hurt people who were close to me for the sake of the ones who are far away. That’s no way to live.

  For now, I’m signing off until 2019.

  Just one poll before I go. I’m going to leave it here for as long as I feel like it. You’ll see why.

  Is it time to stop using the blog polls to make decisions that I need to take responsibility for myself?

  YES, BlueHeart. It was fun while it lasted and it made your point, but things move on.

  YES, Ailsa. Listen to the people who love you, but take control. Have confidence.

  That’s all for now, folks. Dance on.

  Ailsa x

  From: Seb

  Sent: 11 October, 2018

  To: Ailsa

  Subject: Goodbye Blue Heart

  Hey, BlueHeart,

  I’m a bit sad that I’m never going to call you that again, but it seems like it’s time to let it go. You’ll be Ailsa from now on. Or CaveDancer. You choose.

  I know we said we’d only talk once a week (I love the talking) and not overdo emails but that YES/YES should be marked. I hope Apple likes the flowers. They’re definitely not for you. G-smile>

  I am completely bloody knackered. Saskia is relentless. She’s the dance partner equivalent of Roz. She says we can’t rest on our laurels, just because we got through on Saturday, and she’s written the ‘hands like hams’ comment that one of the judges made on the rehearsal-room mirror in lipstick. We’re doing Viennese Waltz and it’s horrible – it makes you dizzy and yesterday I threw up. Today she brought in a bucket so if I was sick again I wouldn’t waste time running to the bathroom. I’m only 85% sure it was a joke.

  No sickness today but we did have a costume fitting so that gave me a break. I’ve got a coat with tails and it’s powder-blue with silver lapels. I’m sending you a photo. My sister says I look like Ken (as in Barbie). I told Saskia. She says she wishes I could dance that well. That was definitely a joke. Her sister’s on dialysis, and has been for three years. I think you’d like her (Saskia, I haven’t met her sister).

  Next week is tango week. If I get through you HAVE to come. Please? I want you to see Saskia laughing at me (she’s much worse when the cameras are off). Tango is her thing so it’s going to be carnage in rehearsal. Even if you could only come for the recording (I know you’re busy) I’d love to see you, and for you to meet everyone. I wouldn’t expect you to stay with me. Though of course you’d be welcome. Little Seb would love to spend some time with you. He says to tell you, in case you’re wondering, that he’s not seeing anyone else.

  I saw Roz (briefly) yesterday. She says hi. She’s meeting people about Love’s Labour’s Lost. Meredith’s got a couple of film offers for next year. I don’t know whether Roz was looking at her for LLL or not. She was bloody amazing in the show but I’m not sure that makes up for rehearsals. I’ve told Roz I think we should have open auditions. She said, Oh, yes, we could make a documentary about it. There’s no escaping TV.

  How’s it going?

  Am I allowed to say I miss you?

  Seb x

  From: Ailsa

  To: Seb

  Hello you,

  I miss you. Especially when emails like that make me laugh. Saskia sounds like my mother. (My mother’s here for a couple of days. She says hello.) A few of us from work are getting together to watch the show on Saturday night. Please send gossip. It’s my currency.

  Is your eye OK? Is it weird knowing that the last of the stitches are gone? I thought of you.

  Thanks for being nice about the blog. I’ve been writing that post for three weeks. I still don’t think it says everything, but it’s as close as I could get. And the flowers are gorgeous.

  It’s going OK, I think. Mum has got a job in a place just outside Glasgow. She’s taking over from a pharmacist who’s retiring. She’s got a three-month contract but if it goes well she can make it permanent. She says she likes that she’s getting to know people. And that she doesn’t work Sundays. She might have said something about going speed dating with Tamsin but I’m in denial about that. I’ve told her that if she does want to come back to live here, I’ll move out. (I said it in a nice way, because I meant it in a nice way. It’s getting easier, for sure.) But she and Tamsin seem to be having a ball. So I had Christa and her partner Kate over yesterday, to talk about them moving in when their lease is up (February). They’re starting a business and they need to save money. I need to have some more income. Job done. Plus, they can cook.

  I had an email from my biological father saying he’d like to have another go at getting to know me, and maybe I’d like to come to Guildford and meet everyone. I’ve said I’d need to bring my mother. That should put a stop to it.

  This week I’ve mainly been trying to find some work experience in a law firm for next year. I thought offering to work for free would be enough to get me something easily but no, there are a thousand thousand other legal-profession hopefuls in the queue ahead of me. There’s a woman who comes into the shop for her coffee (Ethiopian double espresso, pecan Danish, if we have any) and she’s a barrister. I’m going to pluck up my courage and ask for advice.

  Application deadline for the course is March but I’m going to try to get it in next week and then it’s done. Libby’s asked me to do a bit of work on the Lennox website so I’ll get on to that.

  I’ve been asked to work full-time for December so I might be able to sneak some time off in advance and come to London. I really want to see you. But I also really meant it when I said we should see how we felt after six months. August was so – full on. I know that’s normal for you but it isn’t for me. I want to trust how I feel before I see you. Sorry. It’s all a muddle. I’m not explaining very well.

  I hope you don’t need the bucket today.

  Ailsa x

  P.S. I am ignoring your Little Seb reference in the hope you’ll realise that the naming of parts isn’t – oh I can’t say that, can I? Because of Apple.

  From: Seb

  To: Ailsa

  I nearly didn’t mention you coming for the tango week show, but it seemed dishonest not to, because it’s all I can think about. I understand if you feel it’s not the right time.

  Dress rehearsal today. Saskia said I wasn’t terrible. I told her about your blog a couple of weeks ago. She sent the link to her sister and she’s read it from end to end. I sent her a calendar too. They both say hi.

  Did you watch the DVD of Love’s Labour’s Lost yet? I watched mine in bed on Friday night. I know. Rock and roll. Two things I noticed. One: Berowne is the best of them by miles. Two: at the end he says, ‘Our wooing doth not end like some old play’. I thought about you and me. Last time I saw Roz, she said the happy ending was ‘implicit’ and in the final scene, when the women leave, they’ll be wearing colour for the first time in the play.

  Here’s hoping.

  Seb x

  If you say ‘my heart’ instead of Apple I’ll stop saying ‘Little Seb’.

  From: Ailsa

  To: Seb

  I did watch it. Berowne definitely has the best lines. And if the old play is R and J – all the better.

  ‘Behold the window of mine heart, mine eye.’

  Mine heart. My heart.

  I think I might come to London. I’ve got some new red shoes and a matching bag. They need an adventure.

  Ailsa x

  15 October, 2018

  Dear Stranger,

  I know I’m supposed to write to your family, but I can’t bear to visualise them, the same way I can’t imagine what would have happened to my mother, if I had died. I hope that when the transplant coordinator passes this letter on to them, they’ll understand.

  You’re the one who registered as an organ donor, gave permission for your heart to be taken from you, and so you are the one who saved my life.

  You did more than save it, in fact. You created it. Because what I had, up until then, was the best that medical science could do for a baby born with Hypoplastic Left Heart Syndrome in 1990. I’m grateful for the operations that I had and the check-ups that headed trouble off at the pass. Doctors found ways to keep me alive in the hope – and it is a hope, even though that’s a terrible thing to admit – that a heart would arrive and save me.

  Thanks to you, I am not so much continuing my life, as living for the first time. Don’t get me wrong, I did my best before: I started a degree there was no guarantee I would finish, and I went to all-night film screenings with my friends. I went to about half of the things I was invited to and stayed out as late as I could manage. I had a lovely boyfriend, a few great flings and one or two adventures that make me cringe when I remember them. I wrote about the things that happened to me so that someone who started a few months or years after me along the same road would have an idea of what was coming, and might cope better than I did.

  But I was powerless. I felt, fundamentally, like a human-shaped object wrapped around a patched-together not-heart-shaped heart. And I waited, with all the strength I could find, for the double-six that is an available, matching heart when you’re not too ill to embrace it. People call it bravery. It isn’t. But I’ve come to u
nderstand that it’s something.

  You, my heart donor, were the double six. The unlucky throw that you made became the best thing that’s ever happened to me.

  I cannot tell you how grateful I am. But I am. My mother is too. We are all each other has. We always have been. There are other people we love, and who love us, but for most of my life, if I was the failing heart, she was the hard-working, over-compensating lungs that kept me going.

  I’ll be honest. I haven’t completely got a handle on your heart, yet. It’s doing great things, pumping me up steps and getting all the blood to all the places so I can act like a real person.

  I’m not yet the woman I hoped that I would be. But I’m working on that. Rome wasn’t built in a day. I didn’t think I would save the world. But I thought I would know where to start with making my life count. I didn’t, then. I think I do now.

  And the fact that I’m here, now, working on it at all, is down to you.

  I’m sorry for all the things you didn’t get to do, or be. I chose not to know anything about you, which I think is, if not exactly cowardice, the opposite of the thing that isn’t bravery that kept me going until your heart came along. I think I was afraid of hearing something that I would never be able to forget. What I do know about you, whoever you are, is that there will be a small, tight circle of people grieving for you, every day, with every breath. Wider than that, there’ll be others – colleagues, partners-of-siblings, friends from the gym or the pub – all suffering your loss in smaller ways.

  I am trying hard to do justice to this perfectly functioning pump of ours. It seems really loud to me. I wonder if it seemed loud to you. Probably not. But I wonder if you ever thought about the noise it made, the way it moved. Sometimes I lie in bed at night and fall asleep by thinking about the happy pulse and thump of it. It’s the sort of music you can dance to.

  Thank you.

  Ailsa x

  Acknowledgements

  It took me a long time to find my way into this book. Jackie Leach Scully, Monica Buckland and Lorraine gave me the key to unlocking Ailsa’s story, and it wouldn’t be what it is without them.