AILSA: And what do you say in response?
GREEN EYES: I say, I know, I used to be squeamish about my eyes, until I realised what a wreck I’d be without one of them.
AILSA: And you got a transplant. What were the chances?
GREEN EYES: Well, pretty good, I guess, because corneas can be stored, so there isn’t the time pressure there is with other organs. And there isn’t a blood supply direct to the cornea, so blood-type matching isn’t critical.
AILSA: So your cornea can’t be rejected?
GREEN EYES: Yes, it can. But the likelihood is less.
AILSA: How long until you’re back to normal?
GREEN EYES: The stitches come out, gradually, over a year. There’s a question over whether my sight will go back to what it was before, but the fact that I can see a bit at this stage is a good sign. I’m fine. Fine. I’m wearing prescription sunglasses most of the time, because my eye is sensitive to light while it heals, and it is a little bit painful and easily tired. That’s not a problem, but I have to think twice before everything I do. I have to – I don’t know how to explain it – I have to, sort of, measure everything and decide whether it’s worth doing or not.
AILSA: I was like that before I had my transplant. I had two questions – first: Can I manage it?; and second: Can I be bothered to recover from it? There are quite a lot of equations in illness, I think, and this is one of the straightforward ones. Does effort plus impact equal value?
GREEN EYES: Exactly! I don’t know why you’re interviewing me. You put things much better than I can.
AILSA: I haven’t been at the sharp end of a cornea transplant.
GREEN EYES: You actually don’t feel a thing. Well – pushing and pulling. Like at the dentist, but with eyes. You see, you’re wincing now.
AILSA: Sorry. I don’t like the dentist. I have no problem with people pushing and pulling my eyeballs, honest. Last question – has this experience changed your perspective on transplants, Green Eyes?
GREEN EYES: Yes. Yes. I’m ashamed to say that I hadn’t really given transplants, or organ donation, a thought before. Now I’m on the organ donor register, and I’m going to start giving blood as soon as I’m medically fit. We need to be less squeamish about all this. Actively say if you don’t want your organs donated. Otherwise, be useful.
AILSA: You’ll get no argument from me on that.
GREEN EYES: Also, I don’t think next of kin should be allowed to overrule the dead person’s decision.
AILSA: I don’t think grief is a good place to make decisions from.
GREEN EYES: You see? So well put.
AILSA: Thank you. And thank you for answering. I know it’s not always great to look back.
GREEN EYES: I’d be happy to look anywhere.
AILSA: God, sorry.
GREEN EYES: Don’t take it to heart.
AILSA: One-all. I think we’re done.
If you’d like to know more about eye conditions and eye health, start here.
Register to be an organ donor here.
Make sure your family knows your wishes, and will respect them.
And remember, eyes are just eyes. There’s nothing to wince about.
Here’s a question, then. Would you donate your corneas? (Let’s assume, for the sake of this poll, that your corneas are worth having.) You’ve got until 30 March. Though it shouldn’t take you that long to get to the right answer.
YES – I’d donate them, along with anything else that’s useful.
NO – I wouldn’t, and I wouldn’t donate anything else either, and that’s a decision I am entitled to, Ailsa, whatever you think.
NO – I wouldn’t, though you can have my liver and my heart and all my other useful bits.
4 shares
19 comments
Results:
YES
83%
NO (and nothing else)
1%
NO (but anything else)
16%
From: Ailsa
Sent: 27 March, 2018
To: Seb
Subject: Interview is up!
Dear Seb,
Thank you for doing the interview. You’ll find it on the blog, here.
I’ve kept it anonymous, as you said. I hope it’s neutral enough to keep you out of trouble. If not, just say – it’s easily altered.
Ailsa
P.S. Tango was good, though I still feel as though I’ll never get the hang of it. At least I’ve stopped looking at my feet. And it’s so nice to feel a wee bit fitter every time I go.
From: Seb
To: Ailsa
Dear Ailsa,
Great interview! It’s nice to read it word for word, with no editing or opinion. That might be the first time I’ve ever read something and thought ‘yep’. Usually, I spend the rest of the day wondering whether I really said stuff, or how I managed to come across the way I’ve been described. Sometimes I think people write the articles before they meet me.
And I think I’m safe on the anonymity front. Wilkie (agent) did say that theoretically I could be sued if StarDance decide I brought the eye problem on myself, but to be honest they got enough publicity out of it to make it worth their while.
I scrolled back a few posts. It looks like you got some stick after the radio. Hope you’re OK now and it’s settled down.
You should have said when we met. I’m the king of getting slagged off in the press. I could have given you all of my handy hints.
May the unicorns be with you,
Seb x
From: Ailsa
To: Seb
Dear Seb,
I’m fine. Of course the reason I’m fine is that I believe I’m right, which is also what the people who’ve been having a pop think. That’s food for thought. We had better things to talk about than the bottom third of the Internet when we met.
I’m happy to hear any handy hints, though; there’s only so much a unicorn can do to protect me, on the web (they’re hopeless at typing).
How is your eye?
Ailsa
From: Seb
To: Ailsa
My eye’s fine, thanks. I think my sight’s getting a bit clearer.
Here are my tips:
1. If people are arses, fuckwits or in any way abusive, block them straight away. Don’t engage. You won’t win and by replying you only give them more ammunition.
2. Only look at your emails/go on social media when you’re feeling up to it. Or get someone else to look at them for you and tell you what you need to respond to.
3. Remember that although people think they know you, they don’t, really. They know the you that they’ve imagined from what’s out there. You’re separate to that.
4. Make sure you have a different email, different provider, for friends/family/personal stuff to your blog one. That way you can reply to an email from your bank without having to trawl through things with subject lines like I HOPE YOU GET ADIS YU UGLY PRIK. That was one of mine, when I was playing a gay character, and I’ve left the spelling mistakes in because I think you’ll enjoy them.
Take care,
Seb x
From: Ailsa
To: Seb
Thanks, that’s really great advice. It’s all common sense, really, and yet I wasn’t doing 1, 2 or 4. I think I’m not too bad at 3.
So from now on please email me at [email protected] and I’ll stick with blue@myblueblueheart. blogspot.co.uk for everyone I don’t know in real life.
You take care too. Did your Edinburgh thing come off?
Ailsa
From: Seb
To: Ailsa
It did! You’ll be hearing more about it soon.
OK, you’ll be hearing about it in the next three seconds. But shush.
I’m going to be in a show at the Fringe. I want to do something a bit low-key, a bit small, to get me back into it. I was going to have a year off but all I’m doing here is feeling sorry for myself and/or drinking too much. I was meeting a director and
looking at a venue in Edinburgh. It was pretty relaxed, as auditions go, because we’ve worked together before. I think really she just wanted me to see the place so I knew what I was getting into – a fifty-seat venue, basically a room above a pub, no frills. She called me the next day and said it was all mine if I wanted it. I did.
Seb x
From: Ailsa
To: Seb
Congratulations! I’m really pleased for you. I thought after we were talking that you were maybe playing down how much you missed working. Time off when you’re ill is a terrible idea. I know, I’ve had years of it. The worst is when you’re sort of OK but you still can’t do everything you want to; it’s the worst of all worlds. (Although, better than dead/ blind, etc., so you don’t really feel you can complain.)
Ailsa
You can complain. I need to hook you up with Tom Foster.
X
Part Four
Early April 2018
More Light and Light it Grows
www.myblueblueheart.blogspot.co.uk
7 April, 2018
It’s Time for the Party Bus!
Next week will mark the six-month anniversary of the transplantation of Apple into my body, and her achey, worn-out, predecessor finally being allowed to give up its ghost. (The ghost comes back in the night, sometimes, like the first wife in Blithe Spirit, usually when I’m thinking about the past, and Apple loses her rhythm and I get breathless. But we take deep breaths and we manage.)
I feel a bit odd about the marking of days, sometimes. Birthdays are fine, of course, but birthdays of the people we’ve lost, or anniversaries of their death, are things I don’t know what to do with. You can’t ignore them, because it feels wrong, but every day is an anniversary of their loss – first Hogmanay without them, every time you go to text them about a funny thing you’ve seen. They all hurt.
But I’m going to mark the hell out of reaching the six-month point. There’s a celebration planned for tomorrow (I don’t know what it is) and I am having a day off from Paleo. (I’ve lost eight pounds since I started, and it’s just as well, because there are times when the only thing that keeps me out of the doughnut aisle is watching the number on the scale drop. I’m doing this for good reasons – to give Apple the best chance – but it’s hard going.)
I am going to be GLAD. I’m going to love every moment.
Here’s what I get, as presents, or maybe prizes:
1. Time off from hospital. Because Apple and I are getting along OK, I can go to have her checked out once a week, instead of twice a week.
2. The tiniest bit of medical relaxing. I can have serious conversations about reducing dosages of medications. Although I will never be truly well – a transplant is always a palliative treatment, a patch over a broken thing – I can, I think, start to think of myself as well, instead of worrying that I will get found out and turned away every time I try to get on the wellness train.
3. Rejoining the world. I’ve done it a bit – I’ve been dancing; I’ve eaten out in quiet places; I’ve walked through the city as I’ve been collecting my daily steps – but now, so long as I’m not stupid, me and Apple and our hand sanitiser are going to get out there.
4. Going on a bus. I’ve planned my route. I’m going to start in Fountainbridge and take the Number 1 (which seems appropriate) to the end of the line (not appropriate) in Leith. Then a 21 out to Edinburgh Park. I’ll travel this seven-hill city from one end to the other. I’ll see the grungy bits and the grand bits. I’ll look at the river, and peer down into graveyards and up to the tops of blocks of flats. I’ll pass the football ground that I can hear singing and cheering on a Saturday afternoon. I’ll sit at the top deck, at the front. And I’ll know how special it is, though everyone else on the route will behave as though a bus is the most everyday thing that they have, like a fridge or a bed or a suitcase. Or a heart.
5. Finding a job. Being out in the world.
I can do all of these things quite easily (I hope). But as this milestone has loomed, I’ve been thinking about the bigger picture a bit more than I might have done before.
Here’s the thing: Apple has tricked me into feeling like I have a long life – but I probably don’t. That is, immunosuppressants are slowly, surely, damaging my kidneys and my liver. If I’m not careful – and who is 100 per cent careful, 100 per cent of the time, apart from the people we never see or know because they never engage with the world? – I could die of a cold, because my permanently depressed immune system can’t fight something you would shake off in a heartbeat. I’ve a higher chance of cancer. And who knows what wear and tear my body is already carrying, after its years of struggle?
So I’m going to make some decisions about how I spend this life.
Just over six months ago, I felt as though I’d done the best I could with the hand I was dealt. When I look back in ten years I want to be able to say the same thing.
What do I do next? I’m going to make a long-term plan. I’ve been mulling options. I’m not so sure that any of them are right. I’m giving you a week.
POLITICS – Get in there and work for the people, Ailsa. You don’t have to want to be First Minister. You don’t even have to join a party. You can work for the people you represent.
VOLUNTEERING – Do any old thing to pay your bills, and throw your real energy into some sort of volunteering. A career can come later.
LAW – If you’re looking for people to champion, this is the job for you.
ACTIVISM – You might not want to be all about transplants now, but that could change, Ailsa. It’s early days. Don’t close the door on this one.
TEACHING – Broaden the next generation’s horizons. It’s the best possible thing you can do for the world.
FIND A CAUSE – And work for it in any capacity. A charity has to have a well-run office, it has to pay its bills. Being meaningful could be managing spreadsheets.
SOMETHING ELSE – (leave a comment) Things I have considered and dismissed: any sort of medicine, counselling, extensive travelling, or anything that might give Apple a hard time.
17 shares
45 comments
Results:
POLITICS
5%
VOLUNTEERING
18%
LAW
19%
ACTIVISM
16%
TEACHING
18%
FIND A CAUSE
15%
SOMETHING ELSE
9%
8 April, 2018
Ailsa knew there was going to be a six-month celebration. She didn’t expect it to be, literally, a party bus. But at three o’clock, Hayley calls her to the living room – she’s just been choosing a lipstick, a thrill that never seems to get old – and directs her to the window.
She looks into the street and there it is: open-topped, ballooned and beribboned, and – best of all – the top deck filled with laughing, smiling friends. There’s Emily, Jacob, Pritti and Tim, and Christa, who have stuck with her through thick and thin since they met during their first university term. She sees some familiar faces from the hospital staff, grinning too broadly for Ailsa to feel guilty about not going back to see them. Aunt Tamsin. Oh, and Ruthie and Dennis, with their bravest faces. There’s even Edie, Eliza, Venetia and Murray, from tango. So that’s why everyone stopped talking when she walked in last week.
Ailsa feels her hands at her mouth, covering the great happy O it’s making.
Hayley, beside her, puts an arm around her shoulder and squeezes. ‘I laughed when I saw your blog title yesterday. It made me wonder if you’d guessed.’
‘No!’ And Ailsa can feel the tears rising – she’s already more emotional than usual, between her mother starting to pack and the way that the pain of missing Lennox has been flexing again, an old muscle starting to be reused.
But Hayley says, ‘Come on, they’re waiting,’ and before she knows it, she’s up on the top deck and the bus is lurching them off around Edinburgh. There’s a coll
ective ‘ooh’ as everyone gasps and finds something to hold onto. And then the sound system crackles into life with ‘Don’t Go Breaking My Heart’, and Tamsin laughs, and Hayley and Dennis start a duet. Oh, life is good today.
They’re waiting at the lights near Holyrood when Emily tops up Ailsa’s glass with Prosecco. ‘Here’s to new hearts, and taking buses, and not getting a hangover because we’re drinking this outside.’
‘I’ll drink to that.’
Emily shakes her head, laughs. ‘Do you remember the Bacardi hangover?’
‘Worst hangover of my life.’ Not unlike coming round from surgery, actually. ‘I cannot believe we fell for Jacob saying you didn’t get so hungover if you had a drink outside.’
Ah, toffee vodka being passed from hand to hand as she and Emily and Jacob sat cross-legged in the quad after the bar closed, in that first term, when Ailsa Rae and Emily Field were inseparable and everything was new, even this city that had always been her home. Although she had her backstory, the blue of her skin and the slowness of her walk, everyone else she met had a story to tell too. The first weeks were late nights of drinking and talking as they understood who they were, and who they belonged with; then it settled down, into the part that Ailsa loved best, the taken-for-granted friendships and the assumptions that they would be there for each other. On her first admission to hospital that term, her mother had arrived, breathless and scared, after a dash from work, to find Emily, Pritti and Tim sitting around her bed, tapping away on laptops or reading textbooks while Ailsa slept, oxygen tubes in place in her nostrils. That term had muted, and then dissolved, the pain of being without Lennox. He’d gone travelling the summer before starting uni; when he came back, tanned and tired-looking, Ailsa saw the beginning of an inevitable growing-apart for them. She wasn’t going to be travelling. She wasn’t even going to be leaving home. She would be the equivalent of an ailing parent, holding him back, tying him down. So she ended it, and oh, how her old heart ached. Her new friends gave her, at first, something else to think about, and then others to love. It wasn’t the same, but it was something.
The Curious Heart of Ailsa Rae (ARC) Page 9
