The Curious Heart of Ailsa Rae (ARC)

by Stephanie Butland

  ‘Thank you.’ It sounds so straightforward, put like that. Maybe other things that feel impossible now will be doable too, when the time comes. Getting on a bus or a train, working in a pub or a cafe where people come and go, finding a worthwhile purpose for this precious life, given to her rather than someone else.

  Edie steps past Ailsa into the room, goes to a CD player on the bar. At the press of a button the room fills with music. The beat and thrum invites her blood to find its rhythm, join in. She’s here. She’s going to tango. She’s doing one of the things she promised herself – when all she could do was watch her stats on a monitor and hope – that she would.

  There are about twenty others in the class today, all chatting and laughing as they arrive. Everyone else has brought shoes to change into. Ailsa has just worn the only semi-suitable pair she has, smooth-soled mid-heels that she wore for graduation and which have been needed only occasionally in the six years since. She thinks of them as her glamorous shoes, but compared to the ones the other women are putting on – silver-strapped, sparkling, either high or really high – they may as well be wellies. But otherwise these dancers seem ordinary, the oldest probably in his seventies, the youngest maybe twenty-five, some overweight, some tired-looking, some the kind of person who might smile at you as they pass in the street. Ailsa could feel at home here.

  And then the class begins. There’s almost time to remember what a terrible idea this is, how broken her body is and how out-of-practice she is at anything but the bare minimum.

  But Apple seems to know what she’s doing, so Ailsa, in a split-second beat, decides to trust her.

  She’s got her this far, at least.

  They are urged to find their balance, find their centre, feel as though they are suspended by the tops of their heads, an idea that makes Ailsa queasy. But when she does it she feels herself grow taller, and there’s a tension through her body that she equates, somewhere deep, with being alive.

  When they have all walked forwards, walked backwards, pulled the soles of their feet along the floor, turned by following arm then shoulder then hip, the class proper begins. Eliza and her partner Guy take Ailsa and Murray, who is also new, or at least newish, to one side and work with them. Edie and Simeon teach the others, and Ailsa is aware of the sound of instructions being called, laughter, occasional applause.

  Guy takes Ailsa’s left hand, gently, and puts it on his collarbone. He holds her right hand, smiles encouragingly, and says, ‘Tango is easy. All we’re going to do is walk. You never step on the same foot twice. Push your hand against my hand, and let it tell you what to do.’

  There’s no time to think about how strange it is to be held close by a man she’s just met. Ailsa pushes her palm against Guy’s and he pushes back, showing how he can angle her body, how all she has to do is wait to see which way she’s being guided. And then they’re walking – and it really is walking, and Ailsa can walk, even backwards. There have been times in her life when she’s felt that all she’s been doing is going backwards. He nods as they move, breathes ‘good’ under his breath, and finds a rhythm in the music that is slow enough for Ailsa to be able to feel his movement, understand what he wants her to do, and do it. He gives her instructions as they move: to lean in to him, to keep her foot in contact with the floor as she moves it. And somewhere in her belly, she feels something new. She doesn’t have time to identify what it is, but she notices that it’s there, and she likes it.

  Part Three

  March 2018

  All These Woes Shall Serve

  www.myblueblueheart.blogspot.co.uk

  1 March, 2018

  Adulthood

  Last night I dreamed that Apple froze in my chest because I let myself get too cold, and I was paralysed but I wasn’t dead. And if you think that sounds horrific – you’re right. Apple was very much alive, and trying to hammer her way out of my mouth when I woke up.

  I still feel a bit disoriented. I’m sitting by the window, just me and my mug of Lady Grey, and watching the world go by. It’s mostly students coming and going, because there’s a hall of residence just a wee bit further down the street.

  I feel old today, and tired. My mother thinks it’s Paleo and all my problems could be solved with a nice fat cheese sandwich. After I’d got over the first three days of the diet, though – and it’s moderated, as my consultant said I had to add an extra dose of carbs, so I have a side of rice with dinner – I quite like Paleo life. I feel as though I have more energy and a clearer head. Most days. Not today.

  Here’s something I wasn’t expecting about having Apple in my life. I thought about all the things I would do – you know this, because we talked about climbing high things, giving myself a shock and dancing. I hadn’t realised that being an adult, with a full real adulthood in front of them, instead of a twenty-eight-year-old with the physical capability and life expectancy of an ailing cat, would mean I would have more things to think about.

  When I was dying I was special and I was protected. Blue was my superpower because it meant I never had to think about any of the stuff that no-immediate-expectation-of-death people are dealing with day in day out. When you might be dead next week, what you’re doing with your life isn’t really an issue. Thinking about how to pay the bills, contribute to the world, or reduce your carbon footprint, or whether you want to live on your own, or wondering about your biological father – there’s no time for that. It’s just about the next breath.

  I might be going to London for the day, in a couple of weeks’ time, and though that’s going to be quite exciting if it comes off, it is LITERALLY the only thing I have in my diary apart from hospital appointments. That’s not how normal adults live. (I’ll tell you if it happens. Look out for a blog post to help me decide what to wear.)

  Another week of my diet and I might have gone down a dress size. It might be time to go out and treat myself to some grown-up pants, or whatever it is you adults wear.

  Until then – can you help me out? What’s important? What’s my priority right now?

  Apple and I don’t have a clue about this stuff. We need a plan that’s more than ‘count yourself lucky if you’re still here on Friday’. And I need to be able to think about it without getting stuck in the mire of ‘I’ve missed out on everything fun and I’ll never catch up’.

  I know you’re going to want to say ‘take it easy’ and ‘be gentle with yourself’ and all that, but I’ve been doing that for a good long while and I’m – bored.

  I’m giving you until Friday to vote. And then I can start – adulting. As well as living.

  SORT OUT YOUR BODY: If it’s working, everything else will follow.

  APPLY FOR JOBS: It doesn’t have to be THE job. And it’s only six weeks until you hit the magic six-month post-transplant mark and can get out there – it’s not that long.

  STOP THINKING ABOUT YOURSELF: Do something for someone else. Volunteer or fundraise or just do something that isn’t about your cold blue heart.

  GET OUT MORE: See your friends even if you don’t feel like making the effort. Remember those people you promised to meet up with but haven’t yet? Put dates in your diary and stick to them. Go to the pub after tango instead of scurrying home.

  1 share

  27 comments

  Results:

  BODY

  20%

  JOB

  30%

  THINKING

  12%

  GET OUT

  38%

  London, 18 March, 2018

  Ailsa had thought that wearing a unicorn-horn headband and clip-on tail around London was going to make for points and stares, but she gets off the train, crosses King’s Cross station, and gets into a taxi to the radio station without attracting a second look. Betsy, who meets her at reception and takes her to the green room, doesn’t comment either – it’s as though most of her days are spent herding mythical creatures around the place. Ailsa doesn’t know whether to be relieved or disappointed. So far, it isn’t ma
king for a good blog story. She takes a photo of her pass while she waits in the green room. And then she texts her mother, letting her know that she’s arrived safely, didn’t take a tube, didn’t touch a lamp-post, wasn’t coughed on by anyone.

  The invitation to appear on a radio show had come via Ailsa’s blog and as a consequence of her award win. When she’d called the researcher, she’d been offered the option of taking part from the radio studio in Edinburgh, but she said she’d be happy to go in person. Apple seemed very keen on London. Mr Mokbel, her consultant, had given his consent at her appointment on Thursday.

  Hayley insisted on taking her to the train, and they hugged a fierce goodbye. It was strange, still, to do this with something close to casualness, without the possibility of The Final Goodbye casting a shade over them. Ailsa said, ‘Don’t worry’ into her mother’s neck – the rainy-day scarf, blues and greys and a tiny hole at the edge where it caught on a hospital corner somewhere – and Hayley nodded, and squeezed a bit tighter. They need to talk, when Ailsa gets home.

  Black coffee is Paleo-diet-friendly, so Ailsa pours herself a cup. It’s only fractionally better than hospital coffee, which always seems to have a smell of illness about it. Ailsa thinks about getting her notebook out but instead sits back and looks through the glass walls of the room she’s in, watching the purposeful striding of people moving from desk to desk. Their hands flap and fly, and she tries to imagine what they are talking about. She’ll be like this, one day soon: a woman with a job, a purpose, waving her hands and being interesting for something other than her heart.

  The door opens. ‘Ailsa, this is Sebastian,’ Betsy says, ‘the other studio guest this morning.’ She has tidied her ponytail and her smile is lipsticked. ‘Sebastian, Ailsa. She’s a blogger.’

  Thunk-a-thunk. Apple is definitely louder than her old heart.

  A man in dark glasses throws himself into the corner of one of the sofas, dropping a canvas satchel on the floor. He raises a hand towards Ailsa, drops it again. ‘Hey. Everyone calls me Seb.’ His voice is the voice of a baritone hero from Rodgers and Hammerstein, smooth and promising.

  ‘Hey,’ Ailsa says. ‘Everyone calls me Ailsa.’ The inability to shorten it was one of the reasons her mother chose it. She doesn’t say so. The silence becomes the norm.

  Sebastian – Seb – picks up a magazine, and then puts it down again. His denim jacket, battered and black, makes a creak against the pretend-leather of the sofa when he moves. He’s wearing a dark pink scarf. (It’s definitely not red, thank goodness. Ailsa does not need a bad omen today.) His short, sandy hair is ruffled from where he’s run his hand through it, and his cheeks and chin are stubbled. Because of the sunglasses, she can’t tell where he’s looking, or if he’s looking at her.

  She decides to take out her notebook after all, and sits forward to pull it from her bag. She brought her satchel, too, the beloved battered turquoise leather one that Lennox gave her for her eighteenth birthday, before satchels were fashionable, because he said it suited her. As she moves, the headband flops forward, over her face. She pushes it back.

  ‘Nice horn,’ Seb says.

  ‘I’m a unicorn,’ Ailsa replies.

  ‘I was warned. It added a note of the surreal to my Saturday.’ He smiles a slow smile, one that surfaces rather than breaking. She’s waiting for him to take his sunglasses off, but he doesn’t. Instead he stands up and turns towards the coffee, pours half a cup, sniffs it, and puts it in the bin. He sit-sprawls again.

  ‘Good call,’ Ailsa says. ‘It’s grim. The coffee.’

  ‘Life’s too short,’ Seb replies.

  ‘That’s for sure.’

  Ailsa has met some handsome men in her life. Recently, though, most of them have been sticking the business end of a stethoscope onto her chest and then looking at the ceiling as they listened. Before that, there were plenty of fellow university students who attracted a second glance – though most of the second glances that came Ailsa’s way were double-takes at her pallor or the walking stick she sometimes used.

  At this moment, Ailsa is sure that she hasn’t met anyone quite as startlingly good-looking as Seb.

  ‘I’m not going to ask why you’re a unicorn,’ he says. ‘I’m going to preserve the mystery for a little bit longer. Wondering might keep me awake during this –’ He gestures, a flex of elbow and forearm that conveys precisely how little he thinks of the radio show he’s about to be part of.

  ‘It’s a blog thing,’ Ailsa says. ‘My blog decided. It – I ask it questions.’

  ‘Not that much longer, then.’

  Ailsa wishes she could see his eyes; it would be easier to tell if he was joking. He seemed to be serious, but that might just be – Oh, sod it. Life might not be as short as it used to be, but it’s still short.

  ‘Are you joking? Or were you being rude? I can’t tell because you’ve got your sunglasses on.’

  That’s definitely a smile. ‘I was joking. I have to protect my eyes a little bit. Because of the transplant.’

  ‘What transplant?’ Ailsa asks. The shock of hearing the word from someone else’s mouth is palpable; her scalp shivers.

  ‘I had my cornea replaced,’ Seb says.

  Ouch. Her eyelids squeeze together for a second. Apple winces, too. ‘I’m sorry, I didn’t realise. I’m usually the only one with the transplant defence.’

  ‘So that’s what the horn’s for.’

  Ailsa feels her own smile stretching across her face now. ‘Yup, that’s right. When you’ve had a heart transplant you need unicorn protection for at least a year. True fact.’

  And now Betsy’s here again, to take them to the studio. Seb steps back to let Ailsa leave the green room first. It feels as though he’s watching her as she moves, but with the Ray-Bans, it’s hard to tell.

  KAT: And that was ‘Hip to Be Square’ from Huey Lewis and the News, another transplant-themed song, suggested by Pippa in Rochester. Thanks, Pippa, we see what you did there. Although one of my guests did point out to me, while that was playing, that a hip replacement is not really a transplant. We stand corrected. Now, back to our studio guests: we have Ailsa Rae, known as BlueHeart to the thousands of fans who have flocked to her blog every day for the last two-and-a-half years, to find out whether she would get the heart she so desperately needed. And Sebastian Morley, the actor whose eye infection led to a cornea transplant to save his sight. Hello, again, guys.

  SEB: Hello, Kat.

  AILSA: Hi.

  KAT: Earlier in the show we dealt with the vexed question of why Ailsa is dressed as a unicorn, and we’ve tweeted a photo and the link to her blog. Ailsa, isn’t letting your blog run your life a little – disempowering? Or would you say it’s a natural extension of the society we’re all living in, where we’re more concerned about our online presences than our real lives?

  AILSA: Well, I can only speak for myself, I don’t think I’m responsible for what all of the Internet is doing!

  SEB: Fair point, I think, Kat!

  KAT: Listeners, I’m holding up my hands. It’s two against one here. I admit it: Ailsa is not responsible for everything the Internet does.

  AILSA: That’s a relief. But seriously – I wasn’t trying to make a point about living in the twenty-first century, or anything like that. I was thinking about … well, I was thinking about myself, my own situation.

  KAT: So, tell us more about the blog. Your award-winning blog, we should say. How did winning that award feel?

  AILSA: Well, pretty amazing. I’ve written blog posts in hospital and at home in my flat. I tend to do it when I’m on my own. I see the statistics and the comments, so I know that my readers are there, but I don’t know that I ever really thought I had an impact on them.

  KAT: Why do you think you won?

  AILSA: (laughs) I have no idea. I suppose because people can relate to what I’m writing about. A lot of people are touched by heart problems, and a lot are waiting for, or have had, transplants of one sort or another. Plus, I b
log about dealing with chronic health problems – nothing to do with your heart – things like tiredness and coping with day-to-day life, that all sorts of people can relate to. I suppose my blog is in the middle of one of those – oh, what are they called, those circles that interlock…?

  SEB: Venn diagrams?

  AILSA: Thank you. Venn diagrams.

  KAT: Maths not your strong point, Ailsa?

  AILSA: I’ve got a Higher in maths. I’ve just never been on the radio and I’m maybe a wee bit nervous. The way someone might be in a heart clinic. Memory problems can be a short-term side effect of one of the drugs I take to stop the new heart rejecting.

  KAT: I’m holding up my hands. I seem to be doing a lot of that this morning, folks! I apologise, Ailsa. Go on.

  AILSA: The blog polls started, really, as a reaction to the way I felt when I was told the only way to extend my life was through a transplant.

  KAT: And when was that?

  AILSA: When I was twenty-five. I hadn’t been very well for a while, just gradually getting more breathless—

  KAT: Was that when you turned blue?

  AILSA: I was always blue. It was a consequence of the kind of heart repair I had. It was a fenestration—

  KAT: Hey, it’s the weekend! We don’t need the nuts and bolts of heart repair. Why were you blue? In layman’s terms.

  SEB: No, hold on a minute, Kat. You can’t just say ‘blue’ and move on. What are we talking? Smurf? Avatar? Cookie Monster?

  AILSA: (laughing) Not exactly. Closest to Avatar, I suppose. More like – more like the colour of bleached denim. If you see someone with cyanosis, you probably wouldn’t say, ‘Oh, look, a smurf in human form.’ It would be more like – they would seem pallid. Very unhealthy-looking. And their lips would have a tinge you’d get from – from eating blueberries, maybe, and your nail beds too.

  SEB: So the colour your teeth go when you’ve been drinking a smoothie with blueberries in?