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Interview: My Heart’s Content

INSPIRING TALES | We talk to Angela Hughes, author of My Heart’s Content, about her own experiences with receiving a heart transplant, the journey she went on, and how such an event makes someone reconsider life as they know it. You can read more below.

Can you tell readers a bit more about your own story as detailed in My Heart’s Content?

In my early twenties I was diagnosed with a heart condition, hypertrophic cardiomyopathy. I memorised the name and spent the next 10 years trying to forget all about it. That is until my heart decided to remind me, first through short bursts of fast rhythms. Then faster, more erratic rhythms, for longer periods. Rhythms that forced me to miss social occasions, and work. That danced and paused. That accelerated away and then dropped off so suddenly I’d be brought to my knees.

The spells in hospital became more frequent, the doctors more senior. My heart was cardioverted (shocked) on four different occasions to return it to a normal sinus rhythm. When that stopped working, I was referred to a specialist in Edinburgh who ablated (burned) rogue electrical pathways in my heart to stop it misfiring. A procedure for which I was kept awake. It didn’t work the first time but did the second and third. And then didn’t.

Next came the devices: a pacemaker, then a better one. My heart upped the ante and introduced a potentially deadly rhythm. My cardiologist responded with an ICD (implantable cardioverter defibrillator) to shock my heart from the inside. By this stage my breathing was laboured, my body swollen with excess fluid and my kidneys were failing. I was permanently cold, my lips blue, my skin the colour of an over-washed school shirt.

In November 2013, I collapsed in the car park of my local hospital on my way to a routine cardiology department, and two days later was transferred to the Golden Jubilee Hospital in Glasgow to be assessed for transplant. The book tells the story of the 17 days from when I was initially listed for a new heart to when I received it.

“Receiving a new heart didn’t just save my life, it transformed it.”

Why did you want to tell your story via memoir?

In the early stages of writing my story, I was mentored by Karen Campbell and my intention was that it would be fiction. We’d discussed memoir but agreed fiction would give me more freedom to play with the telling of my story. At some point, I started to feel uneasy, like I wasn’t being true to the transplant experience. To fictionalise it seemed to lessen its significance. I also felt the need for sensitivity around the story, out of respect for my donor and their family. And to be honest, I struggled to fictionalise something so huge and impactful in my life.

Memoir for me has always walked the line between fact and fiction. It offered me the chance to tell my story, while still allowing me to be playful with the language and narrative style. It was the best of both worlds.

How did you find the process of writing something both so personal and profound?

I wrote the story during my recovery so it was often done in short, intense bursts, whenever I could summon the energy. There was no order to my recollections, no real structure. I wrote elements of the story as they came to me, using notes I’d made in hospital and from conversations, both direct and overheard, from the post-transplant clinic. Most of the early writing was emotionally superficial. It was almost like I was writing through half shut eyes, leaning back, the computer at arms’ length. It wasn’t until I hit upon the narrative framework for the book that I was able to really settle into it and let the writing expand into some of the more challenging moments.

The most difficult decisions were around how much of my experience I could allow myself to share. How honest I was prepared to be. I was also aware of the responsibility I had for others caught up in my story, particularly my family and close friends. Allowing them to share their thoughts and memories through short extracts in the form of letters, really helped set me free from some of that responsibility.

Overall, writing the book was cathartic, painful, and necessary.

Your book is an examination of ‘a life in the balance’, focusing on joy as well as well as the harder realities. What were some of the lighter moments you found?

As, I imagine, with all situations of this kind, humour is often unintentional and unexpected. I have a kind of personalised blooper reel of comments from medical staff that still make me giggle, but are definitely of the ‘you had to be there’ kind. What was unexpected were the small kindnesses: the nurse who offered to bring me takeaway to try and coax me to eat, or the one who would come in red faced to tell me about another of her minor slapstick mishaps, to distract me and make me laugh. Or the auxiliary nurse who wrapped tinsel round my drip stand and brought me in a Christmas tree, festooned in lights, for the corner of my room. Or the beers stored in the fridge for Paul.

Consultants would call in to see how I was doing and talk about music or books. And Paul and I would stifle laughter at the look of delight that crossed my surgeon’s face when talking about the gory details of surgery.

And then there was Paul, with his surprise Christmas jumper, his ridiculous dance moves, the impromptu busking sessions with his guitar, the nurses coming in with requests. And the stick drawing of our future on my noticeboard that he would add to each time I used the bathroom or was taken away for some kind of procedure.

“I believe storytelling is a powerful and immediate way to engage people with more emotionally challenging issues.”

How did awaiting and getting a heart transplant impact your view on life? Did it change your perspective on what is and isn’t important?

Waiting for a new heart taught me patience and a deeper sense of humility. It also instilled a calm acceptance of the inevitability of death, which wasn’t as scary as I imagined it would be. The importance of my relationships with friends and family was brought into sharp focus – the possibility of leaving them all behind, forever, almost unbearable.

Receiving a new heart didn’t just save my life, it transformed it. I went from being unable to walk from the living room to the bathroom without gasping for breath, to riding a bike and climbing mountains. And I know it’s a cliché but it really did change my perspective on what’s important. I can’t tell you how exciting it was the first time I was able to ‘pop out to the shops’ without worrying about where I would stop along the way and whether I would even make it there.

Even now, it thrills me to be able to run up the stairs to our flat, or walk on the beach with Paul, or dance at a friend’s wedding. All the normal things I hadn’t done for years and believed I wouldn’t do again.

Each day, since Paul and I walked out of the hospital together, is one we never thought we would have. We never forget it.

You and your partner have also used spoken word and music to explore the topic – do you find differences in exploring it creatively alongside memoir? How does it differ for you?

Writing is much, much easier! Authors are essentially invisible, unless they choose to be otherwise. Spoken word is more immediate, more visual. There really is nowhere to hide. That said, there’s something exhilarating about sharing a condensed version of your story with an audience. Of experiencing the immediacy of the reactions and feedback.

Paul is a musician and I enjoyed exploring ways to present our story – which words to include, where to pause, how to hold everyone’s attention. I love the musicality of language, so to integrate words and music felt very natural to me. The hardest part is the performance.

The reason for exploring spoken word as a medium for my story was simple – I believe storytelling is a powerful and immediate way to engage people with more emotionally challenging issues. Paul and I have also been playing with idea of writing a longer piece for theatre. Perhaps we still will. One day.

What do you hope readers take from your book?

It’s difficult for many people to get their head around the idea of removing someone’s heart and replacing it with another. It’s emotionally complex. Telling my story is my attempt to advocate for organ donation; to give people the flip side of the story, of how it feels to wait for an indeterminate amount of time for your last shot at staying alive. To know your only chance of survival rests on the death of another. The unsettling mixture of hope and guilt.

At its essence I guess my book is a love story, to Paul, to my incredible friends and family, and to the NHS. It’s about hope and love and a sense of community. When I think of all the people involved in my care both pre-transplant and my ongoing, lifelong aftercare, it blows my mind. So many people, so much dedication, so much love. I hope people feel the love.

My Heart’s Content
 by Angela Hughes is published by Liminal Ink.