‘Everything is just as it should be,’ a voice says, in the night. Although Ailsa knows it’s a nurse – can even tell it’s Frankie, from the clipped clarity of the Highlands in his voice – in the darkness, she hears Lennox, beloved and oh so missed, who waited for a saviour who never came. She thinks about how she has lost six days, or rather traded them for something like a normal life. She was weeks from death. Now she has almost as good a chance as anyone else of seeing sixty. Well, fifty, at least. It’s as though she has been given permission to look out of a window that has always been forbidden to her before: she cannot believe how far away the horizon is, how beautiful the view.
The next morning, Ailsa sits up, and eats a banana, and Hayley beams. She throws it up again.
‘Ah well,’ her mother says, ‘you cannae win them all.’
www.myblueblueheart.blogspot.co.uk
1 November, 2017
A New Friend
Yesterday, Mum and I packed up my hospital room and got into my honorary-auntie’s car and brought my new heart home. I’ve had a couple of day trips and popped in here – hospital is not prison, though they do sometimes tie you to machines so you can’t really leave – but this was Official Discharge. Which is way nicer than it sounds. I’ll be back at the hospital three times a week for the next wee while, and I’m not out of the woods yet, but there is cause to be pleased.
The moment we got back to the flat, we all three looked at each other and sighed, and it did feel a bit as though we had been holding our breath for – I don’t know how long. We were going to get a takeaway, but I took my meds and went to bed, and Mum and Auntie T drank wine and kept waking me up with their laughing. It was a good sound. (They shared a flat in their uni days and sometimes I think they’ve forgotten that they’re not there anymore.)
So, I’m home. The hospital residency part of my BlueHeart/NewHeart life is done.
Now let the living commence.
Thank you for hanging on in there with me! (And for never, ever making me eat jelly when I asked you to vote on menu choices.) Especially during all those compelling posts about my strange post-operative body and how weird it is to be growing a beard. The facial hair remover is working just fine. And the nurse assures me that it’s a temporary side-effect of the drug regime, and won’t be forever, and neither will the moon-face and the extremely erratic bowels. Here’s hoping. There’s still a likelihood of a vote on cures for constipation.
While I was out for the count, you all voted. Dancing and climbing a high thing came out on top. (Do you see what I did there?) And those are absolutely in my plan. But not for a wee while, because of all the getting better there is still to do.
Some getting better is easy(ish). Get enough sleep. Take enough exercise, within reason. Eat the right things. (That one needs a bit of work, to tell you the truth. The major side effect of steroids seems to be an insatiable need for cake.)
And some getting better is different. It’s hard to explain. All I can say is – I wonder whether this new heart is having to learn me like I’m having to learn it.
I know it’s not logical. I know it’s not science. But we also know that science used to think that deoxygenated blood was actually blue. It isn’t. Veins look blue (I looked blue) because of light hitting the skin over them and scattering into the wavelength that we see as blue. So there you go. Just because something looks true today doesn’t mean it will still be true tomorrow.
I just – I don’t trust this heart. Maybe it’s because it’s a new-to-me muscle, untried, untested, and so I’m not going to use it to do any seriously heavy lifting until I know what it’s capable of. I don’t know anything about the person this heart came from. Mum and I talk about them, most days, even if it’s just to say, ‘Thank goodness for them’ and ‘I wish they knew what they did’. I do wonder how their heart feels, in this new body.
I was thinking about that this morning, as I was walking, walking, because whatever happens in Edinburgh, rain or sleet or wind or sun or all of them at the same time, I am going to walk every day. At the moment it’s ten minutes, five there and five back. Next week I’ll up it to fifteen. (Fifteen minutes in Edinburgh can be hard going. Edinburgh used to be a volcano, geology fans.) And I was thinking – maybe I should make friends with this heart. And making friends starts with a name.
I’ve chosen two, but I’m leaving the final decision to you.
I’m giving you three days.
APPLE: Plump, red and good for keeping the doctor away. What better name for a heart?
AMBER: An amber traffic light means take care, and I need to take care of this heart in all sorts of ways or it will end badly for us both. Amber balances emotion and clears stress.
102 comments
Results:
APPLE:
64%
AMBER:
36%
2 November, 2016
This Time Last Year
‘I win the Most Colourful Hands contest,’ Lennox says. They’ve got into the habit of starting Ailsa’s visits with a comparison, though she wishes they hadn’t, now that Lennox is getting more jaundiced by the day.
‘You win this round,’ Ailsa says. ‘I’m the winner overall, and you know it, because I’ve got years on you.’ Her nailbeds are always bluish, and sometimes the skin on her fingertips has the same unhappy hue. She takes her hand from where it’s been lying next to his on the hospital bedclothes, side by side, so that they could compare. Lennox moves his hand too, and their palms kiss, part.
He’s diminishing, as well as yellowing, his athlete’s body lacking exercise, his appetite gone. She tries not to show that she’s noticed. He shuffles along the bed so that she can perch next to him, puts his left arm around her to keep her steady.
‘How’s life? Tell me things that aren’t to do with hospital.’
Ailsa laughs. ‘I’ve been watching West Side Story,’ she says.
‘OK. Tell me things that aren’t to do with hospitals or West Side Story.’
‘You’re an ungrateful sod,’ she says, and looks down at his right hand on the blanket, but her eyes slide away from its pallor and the cannula taped to it. She’s understanding, more and more, what it’s like for her mother, her friends, when she’s ill enough to be hospitalised and they come to see her. She wants to do to Lennox all the things she hates when people do them to her. She wants to tell him it will be all right, that he’s brave. She wants to squeeze him and say she loves him. Hell, she wants to have sex with him, just to see if it will make either of them feel better. The usual rules for ex-boyfriends and girlfriends cannot possibly apply here.
‘I know,’ he says, and he rests his head against hers. ‘What’s what with the blog?’
‘Oh.’ Ailsa jumps with the surprise of remembering it. ‘I’ve got to ten thousand hits.’
‘Fantastic.’ And though he’s tired there’s genuine pleasure in his voice. ‘That’s amazing for, what, six months? I hope you’re proud of yourself.’
‘Seven. I started it when I went on the transplant list,’ she says. ‘But it’s weird. I mean, some people leave comments, and share things, so I know people are reading it, but it’s a bit – one way. I’ve been trying to think of a way to make it more…’
‘Interactive?’ Lennox asks.
‘Yes.’ Ailsa snuggles closer, breathes him in – he’s been wearing the same aftershave for almost as long as she’s known him, and he still smells of it, even though he gives off the strange, sweet scent of his illness too. ‘Whatever I think, or do, or want, is irrelevant, because it all comes down to getting a heart. Or not. I want to show people that.’
‘And you want to keep it anonymous?’
‘I think that’s best. Folk can hear all about my ups and downs so long as they have no idea who I am.’
Lennox shifts his weight so that he can move towards her, and hold her with both arms. ‘I know exactly what you’re getting at,’ he says. ‘We’ve got to hang in and hope. And it’s shit. It’s out of
our control. So you need – how about some sort of poll?’
Ailsa still fits against him so comfortably, so well. ‘You mean if I ask people to decide things any normal person would decide for themselves, I’m making that point, aren’t I?’
Lennox laughs, holds her at arm’s length, then kisses her, his mouth a little sour. ‘Genius, Rae,’ he says, and his smile has never changed, not since the first day they talked to each other when they were sixteen and working on an after-school project in a church hall. ‘This time next year that blog of yours will be winning awards.’
Part Two
February 2018
More Care to Stay Than Will to Go
www.myblueblueheart.blogspot.co.uk
3 February, 2018
Behind the Mask
Today, Apple is dealing with out-of-the-ordinary excitement.
Mum works most days, now that she’s not on permanent Heart Alert, and so I’ve the flat to myself most of the time. I write a post, maybe wade in to some discussion about transplants or waiting lists online. I think about jobs I might apply for, once I reach the magic six-month milestone where Apple and I should know each other well enough for me to be able to protect her in the wide world, and her to be able to meet the odd germ and bug without losing her beautiful rhythm. (To be fair to Apple: it wouldn’t be her fault. I’m going to be on anti-rejection meds forever.)
When I got back from my walk today – eight thousand steps (yes!) – and fired up the laptop, I thought I was going to be in for everyday ordinariness.
But it turns out you lovely people have nominated this blog for the Best Patient Experience Blog in the UK Health Blogger awards.
Wow.
Thank you. (No, YOU’RE crying.)
This is a big big BIG deal. On the off-chance that this is the only blog you read, let me tell you – there are more blogs than there are stars in the sky (probably). Being chosen is a huge honour and I cannot tell you how much it means to me.
The fact that I’m here at all is fifteen sorts of miracle, and that’s before you get to the transplant. If you’re a regular here you’ll know that, until the 1980s, Hypoplastic Left Heart Syndrome meant a baby dying while its mother watched. I had three operations before I was four years old and even if there hadn’t been a healthy heart to replace my patched one, living until I was twenty-eight would have been considered not bad going.
I’m alive, thanks to a freak set of circumstances, which includes someone else’s misfortune. And I think of that every day.
It still seems strange to me that others would even read this blog, let alone come back, and vote on the nonheart related elements of this life that’s not my own. I did think that my coping might help others with their coping, and that any HLHS folk, a little behind me on what we’ve learned to call the patient pathway, might benefit from my experience, and avoid – or at least be a little bit prepared for – some of the things that have knocked me for six. I hoped (still hope) this blog would help the families and friends of HLHS patients to understand what it’s like. Being ill is a pain. Being ill and explaining yourself is exhausting. If I have helped, I’m glad.
So – thank you. Truly. With BlueHeart bells on.
I can’t go to the awards ceremony. I’ll tell you why another time. If I can manage it. The organisers were kind and I’m recording a video just in case I win.
And I really want to. But – if I do – I won’t be BlueHeart anymore. I’ll be me, un-anonymised, and if I were to show my face there, then of course I have to show it here too, and be me, the real person, in real life. (The one who, coincidentally, isn’t blue anymore.) And that’s scary. Here’s something I didn’t expect. Since Apple arrived in my life, I’m not completely sure who I am.
You know what’s coming, don’t you?
Voting closes in two days.
Should I make the video, and come out from behind BlueHeart?
YES – This is a new phase in your life, and it’s good to make it different.
NO – Protect yourself, physically and emotionally, for a wee bit longer. Send a message. Hide your face.
Until next time,
BlueHeart xxx
2 shares
10 comments
Results:
Yes
87%
No
13%
6 February, 2018
‘Do you want me to make some of those cards to hold up? What do you call them?’
Ailsa laughs. ‘Idiot boards? No, I think I’ll be OK. I know what I want to say.’
They have spent an hour working out the best place to make the film, with a non-distracting background and good light. Now, Ailsa is sitting on the armchair near the window in their living room, and Hayley is perching on the coffee table with the iPad. A mini microphone trails its cable from the audio socket to the floor at Ailsa’s feet. She picks it up and holds it in her lap.
‘You’ve only got my head and shoulders in, aye?’
‘Down to here,’ Hayley says, drawing a line with her finger across her own chest, from armpit to armpit.
‘Good.’ The test run, filmed from further away, was depressing. Ailsa knows she’s gained weight – has to know, because she has to weigh herself every morning, alert for the gain of three kilos overnight that could be a sign of rejection – but hadn’t realised that, if she’s filmed when she’s sitting, there are three rolls of fat where her waist should be. Still, as Hayley says, she could have been a worm’s picnic by now. She shouldn’t be bothered about her appearance.
‘Ready when you are, hen.’
‘OK. Press the button.’
Deep breath. Big smile!
Hayley gives a thumbs-up and then watches the screen. If she was looking at Ailsa directly, she’d cry, and Ailsa would cry too. At least that’s what happened the second time they practised this.
‘Hello. My name is Ailsa Rae, though you might know me as BlueHeart. I’m honoured and overwhelmed to have won this award. Thank you to everyone who has voted for me – and, even more, thank you to everyone who has read my blog, and voted in my polls.
‘Waiting for a transplant makes you feel powerless. My blog showed this in the best way I could think of. I had a life-saving operation two days after I was born, another before I was two years old. My childhood was almost normal, but I lived on the edges of what everyone else took for granted. I tried to do all that I wanted to, but by the time I finished my degree, which took a year longer than most people because I had a wee spell or two in hospital, it was obvious that my heart was failing. So I spent almost four years becoming more and more unwell, until I went on the donor register. And then I got lucky.
‘This is bittersweet for me, because the person who helped me with the blog in its early days died less than a year ago, waiting for his own transplant. He should be here. He should be –’ Hayley makes a gesture towards the iPad, ready to stop recording, but Ailsa takes a breath, deep – and oh, what it is to feel how good that feels – and steadies herself. ‘He died. I wish he was alive. If more people were on the organ donor register, if more people made their wishes known to their loved ones before they died, he might be alive.
‘Thank you for voting for me. My name is Ailsa Rae. I’m the recipient of a transplanted heart. Please, when you die, when someone you love dies, help to let someone else live.’
10 February, 2018
Today is about Lennox, and enduring the day that would have been his birthday. His mother’s email invitation had been clear: this would be a celebration of all their good memories. Easy in theory, but as the taxi brings Ailsa and Hayley closer and closer to the Douglas family home, Ailsa is light-headed and lower-belly nauseous in a way that’s different to the feeling her meds sometime give her. She’s thinking about all the things she usually forces her mind and new heart far away from: rediscovered love, hanging-on hope, the grief that has pinned her to the ground since Lennox died, staring blankly up into aching grey.
‘Ready?’ Hayley asks, wh
en they step out of the taxi and onto the pavement. They’re a little late getting here, something Ailsa is starting to think might have been strategic on her mother’s part.
‘I don’t know.’
‘Take your time, hen,’ Hayley says, and she reaches into her bag, pulling out a packet of Marlboro cigarettes and a Zippo lighter that’s probably older than Ailsa. ‘I’ll just fortify myself a bit.’
The house is away from the bustle of Portobello, and past the end of the Promenade. It’s a serene-looking place, a huge bungalow with bay windows that look out towards the sea in front, though Ruthie said they bought it more for the garden stretched out behind, which had once been an orchard. It looks well cared for, the front garden neat, the paths without weeds, the gate a shining, flawless black. Ailsa thinks of all the time that such maintenance must take, and how it must fill the grieving days.
She takes a breath. Another. Reminds herself that at least some of the pain must have been cut from her body with her old heart. Apple doesn’t really know what it was like to love Lennox, and then to lose him. But it seems she has been paying attention, learning: Ailsa’s chest is stretched tight with love and loss.
She hasn’t been here since the day of Lennox’s funeral, which was a day so grim that just that glance of memory makes her want to cry. Then, she wore black. It’s harder to know how to dress for a memorial/birthday party. That black dress doesn’t fit anymore, anyway. She’s disoriented by the sight of herself in the mirror, these days. All those chins.
But she is, after all, alive.
Hayley grinds out her cigarette with the heel of her purple patent DM, and Ailsa remembers her red pair, which she loved, but had to get rid of when red became her unlucky colour.
The Curious Heart of Ailsa Rae (ARC) Page 2
