A new way of doing things

Today I’m wearing my favourite green dress, the one I wore at the weddings of two sets of friends last year. It’s loose and the colour makes me smile. I’m wearing it because later today, along with my husband Paul, I will launch the Kickstarter campaign to raise money to help me fund my first book. And because I cried during my daily meditation (more on that later).

At the end of 2016 My Heart’s Content, the memoir I wrote based on my time on the urgent transplant list, was signed to a publisher, with a provisional publication date of spring 2018. At the news Paul bought me flowers and prosecco and we ate chips in gravy for tea. The publisher was my first choice and the only one I had sent my manuscript to for consideration. I couldn’t believe my luck. In 2017, before my publication date, the publisher went into liquidation and my mum was diagnosed with a brain tumour. Priorities shift. Things change.

Three years on the world is on pause. My mum’s recovered and after much discussion, my husband Paul and I have decided to use our ‘staying in’ time to publish my book ourselves. 

We both believe in making things happen; in taking creative control, though sometimes there’s a lag between our belief and the actual doing. We love that the literary world is beginning to embrace and celebrate those who take initiative and either self-publish or form collectives to share knowledge, expertise and enthusiasm and get things out there. 

I did try the traditional route. With the help of a friend we knocked on the doors of some of the bigger publishers. The rejections were positive but apparently books about heart transplants don’t sell, or at least don’t sell enough. Unless you’re a celebrity. Which I’m not. Except when I’m headlining Glastonbury in the shower, but that’s another story.

For me, and I imagine lots of authors, it’s not about the money, well not completely. Of course it would be amazing to write a bestseller and retire off the profits but I think the lack of wizards in my book precludes me on that score. The thrill for me is the thought of someone reading what I’ve written. And liking it. Or not. (But preferably the former.) The sheer joy of getting my words out there. Of sharing my story. It’s the equivalent of standing on stage and hearing the audience sing your words back to you, even if that audience consists of two slightly inebriated punters, a tired barman and a random dog. At least I imagine that’s the equivalent.

But there’s a cost involved to writing a memoir about such an intimate, life-altering experience. An emotional toll, payable each time you relive the moments of terror and desperation. Each time you try to describe how it feels to be utterly exhausted and yet to fight the sleep you so badly need, night after night, for fear if you succumb, you may never wake up again. Or the pain of catching the momentary slip of a smile on the faces of those you love when they see you for the first time in hospital, hooked to a drip; your drug-induced tremble, skin slackened and grey. The guilt of knowing your future relies on someone else being denied theirs.

During the preparation for the crowdfunding, I’ve found myself in a head-on collision with memories from that time. Of willing the pressures in my lungs to reduce, or my kidneys to keep working. Dreams filled with abandonment, by Paul, my family, my friends. Relief on wakening to find I’m not in a hospital room with hermetically sealed windows. Delight at the breeze on my face, the ability to turn over in bed without fighting for breath.

In this morning’s meditation, breath even, mind beginning to settle, I was suddenly back in that hospital bed, being wheeled along a corridor, lights passing overhead. Paul at my side, holding my hand. And then the point where we stopped; the theatre doors. The discrete turning away of the accompanying theatre staff so Paul could say good bye. That’s when I realised I was crying. Silently. Relentlessly. The moment when I knew there was a real possibility I would never see Paul again. Or my family and friends. And for a few moments it was more than I could bear.

That’s the emotional price you pay.

That’s the reason I’m wearing my favourite green dress.

But it’s worth remembering that when time is limited, there is joy to be found in even the smallest of things: a bedside Christmas tree gifted by one of the nurses; unexpected chocolate from a friend; penguins in a text; the softness of a cashmere scarf; the touch of a loved one; the drawings from your cousin’s children; the laughter from across the ward of those who have already had their transplant. Pink fizz and Paul in a festive jumper!

I wrote My Heart’s Content as a story but hoped it would also help raise awareness of heart transplantation and what it means in real terms. Organ donation and the change to an opt out system in the UK is a current issue and my story provides insight to the flip-side of the subject – to what it feels like to wait for a new heart, knowing that your chance to live depends on someone else dying.

As I say on my crowdfunding page, it’s the best book I could’ve written on a subject I would not have chosen to write about. 

I was compelled. I owe it, somehow.

For details on how you can support the project, have a look at our Kickstarter page: https://www.kickstarter.com/projects/myheartscontent/my-hearts-content

I hope you like it.