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 percent, whatever happens to me will happen 100 percent. As in, I could be 100 percent dead this time next week.
Night night, BlueHeart xxx
P.S. I would really, really like for one of you to get your- self 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, let- ting 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.
From The Curious Heart of Ailsa Rae by Stephanie Butland. Copyright © 2019 by the author and reprinted by permission of St. Martin’s Publishing Group.
For fans of Josie Silver's One Day in December, The Curious Heart of Ailsa Rae is a wholly original, charismatic, and uplifting novel that no reader will soon forget.
Ailsa Rae is learning how to live. She’s only a few months past the heart transplant that—just in time—saved her life. Now, finally, she can be a normal twenty-eight-year-old. She can climb a mountain. Dance. Wait in line all day for tickets to Wimbledon.
But first, she has to put one foot in front of the other. So far, things are as bloody complicated as ever. Her relationship with her mother is at a breaking point and she wants to find her father. Then there's Lennox, whom Ailsa loved and lost. Will she ever find love again?
Her new heart is a bold heart. She just needs to learn to listen to it. From the hospital to her childhood home, on social media and IRL, Ailsa will embark on a journey about what it means to be, and feel, alive. How do we learn to be brave, to accept defeat, to dare to dream?
From Stephanie Butland, author of The Lost for Words Bookshop, The Curious Heart of Ailsa Rae will warm you from the inside out.
Women's Fiction Contemporary [St. Martin's Griffin, On Sale: October 29, 2019, Trade Size / e-Book, ISBN: 9781250217011 / eISBN: 9781250217028]
STEPHANIE BUTLAND lives with her family near the sea in the North East of England. She writes in a studio at the bottom of her garden, and when she's not writing, she trains people to think more creatively. For fun, she reads, knits, sews, bakes, and spins. She is an occasional performance poet.
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