Opt for Life

This morning, at an hour with which we’re not very familiar, before even the weather had decided on its choice of wardrobe, Mr D and I stumbled into our car and headed south to the Scottish Parliament in Edinburgh. We arrived at the top of the Royal Mile:

‘Shall we park here and walk down or should we try to get a bit closer?’

‘Here’s fine, it can’t be that far, we’ve got plenty of time.’

Turns out it’s called the Royal Mile for a reason. By the time we arrived, our half hour surplus had dwindled to minutes and security took care of those. At least the sun was out.

Brian and BiboWe were there to show our support for a Private Member’s Bill launched by MSP Anne McTaggart – Transplantation (Authorisation of Removal of Organs etc) (Scotland) Bill. The bill proposes that Scotland move from an opt-in system of organ donation to a ‘soft opt-out’ one. In other words, rather than signing up to be a donor, it would assume everyone to be one unless they have specifically registered their wish not to be. The soft opt-out also allows for the family or a registered proxy to object if they know or have reason to believe that their loved one did not want their organs to be donated, or if they themselves are against it.

Regular readers of my blog will know that I received a heart transplant 18 months ago on Christmas Day. I was one of the lucky ones. Every day, people across the UK, die whilst on the list, waiting for a transplant. In Scotland, public consultation suggests that more than three quarters of the population are in favour of organ donation yet less than half are on the donor register. The Transplantation Bill would help bridge that gap.

But for the kindness of a stranger and the courage of their family, I wouldn’t be here. It’s impossible for me to express how grateful I am. My heart transplant didn’t just save my life, it gave me a future that as little as two years ago, I could only have dreamt of. A future where climbing stairs, walking to the shops, sleeping on my back with just one pillow, bending to tie my shoes, getting out of the shower unaided, dancing at my wedding, and all the other things I never believed possible, became a reality.

Over the last year and a half, I’ve met several people who’ve also had heart transplants and all of them not only appreciate the value of the gift they were given, they also treasure every moment of their new life. They know what it cost someone for them to be alive and they have no intention of squandering it.

IMAG0358 (2)I don’t pretend to understand the bureaucracy involved in passing a bill into law. I do know that, at this stage, it’s important that as many MSPs as possible lend their support to it. To help this process along, if you agree with the bill, you could contact your MSP and ask if they have added their name to it and if not, if they would be willing to do so.

It’s a cliché but life really is short. Organ donation not only saves lives it transforms them – the aim of the new bill, if passed, is to improve the chances of a transplant for more people in Scotland. In Wales, the law is in the process of being changed in this way and in countries around the world it already is so. Hopefully, Scotland will soon follow.

Find out more on the Opt for Life campaign, led by the Evening Times, here.

For those interested in reading some of my own writing, The Jungle Rock, is the extract based on my own experience on the urgent transplant list, as published in the Next Review. It forms part of my unfinished LPoW (Longer Piece of Writing).

***  The photos are of my friend Brian with a self-portrait painted from a photo his wife Bibo took whilst he was in ICU immediately after his transplant, and of Bibo with part of one of her sculptures – a bronze cast of her face. Both are part of their exhibition, The Shared Heart, which I wrote about in my last blog.

Feel the fear…

In the last couple of weeks, Mr D and I have made our spoken word debuts; both of us taking part in The Front Room in Alloa, and Speakeasy at the Scottish Storytelling Centre, Edinburgh. In Alloa we gathered in an artist’s studio – one of several in the artist collective based at Marcelle House (part of the Maker’s Village). Around 30 people cosied in, straining the studio at the seams. Confidence skittish, I entered the room holding Mr D’s hand a little too tightly, an extract from my LPoW tucked in my pocket, my fingers returning to it again and again as I sat, summoning up the courage to add my name to the list of readers. Mr D, a seasoned performer in another incarnation, signed up, sat back down and struck up a conversation with two poets sitting in front of us. I decided I’d wait until after the first half before committing to make the transition from voyeur to participant.

A sticky camaraderie bound the room together: poems, short-stories, nerves, laughter. Mr D crested the first half, a wave of applause depositing him back beside me. He’d seemed so confident but when he folded his notes I noticed his hands shaking. Decision made. If he could do it despite the nerves, then I could too. So I did. In the second half. I scanned and read, editing as I went along. I looked at no-one and everybody; shook and smiled, and sometimes I remembered to breathe. At the end I returned to my seat and Mr D stroked my hand. I was glad I’d done it. Surely it would be easier the next time.

Speakeasy posterFast forward a fortnight and I’m standing to the side of the stage, about to be introduced as the first act in the Speakeasy. There’d been a brief sound-check earlier in the evening when, freaked out by the microphone, I’d decided against using it in favour of projecting my voice. I’m considering the wisdom of that decision. Then there’s my name, and I’m on stage. The lights are down, it’s silent, peaceful, welcoming. This time I begin with an extract from my writing, before talking a little about my experience; the latter is the more daunting. There’s a point where I think I might not get the words out – I pause, collect myself and though my voice wavers, I manage it. The dimmed lights make it impossible to see anyone other than the front row of the audience but I know they’re there, my friends, rooting for me, like they’ve always done, lifting me, spurring me on. I finish with another extract. The audience gasps at the end and then, applause. It’s over. I smile, say thank you, and wonder how on earth I’m going to manage to make it back to my seat without my legs buckling under me.

In the break several people come over to talk to me, to tell me they enjoyed it, to ask me more about my transplant. I’m moved and humbled by the response. Friends hug me and one hands me a glass of red wine: wine on an empty stomach! By the time the second half begins, my hands have stopped shaking and I’m basking in alcohol’s warm embrace. Mr D rounds up the evening with stylish ease (only I know how his hands shook before taking to the stage).

Ten minutes on stage but several days of preparation. I am in awe of those that do it on a regular basis. Not only were all the other performers amazing to watch, they were also fun, reassuring and really great people – several confessing to being nervous before every show. It was a fantastic to share the experience with them. Later, in the pub, I was asked if I enjoyed it. On balance, yes. Would I do it again? Buy me another glass of red wine and we’ll see.

For those of you interested, you can read the extract from which I read here – the full extract is about to be published in the Next Review.

To book tickets for next month’s Speakeasy visit the Scottish Storytelling Centre.

Hope Over Fear (part II)

My last post related to the recent Independence referendum in Scotland and my belief in hope over fear. Today the subject matter may be different but the sentiment stays the same. This time it’s personal.

As many of you know, the last couple of years have been challenging for me on the health-front. A hereditary heart condition deteriorated rapidly and last autumn, I was in the end stages of heart failure. I’d felt my body getting sicker. I knew I was ill and deep down, I knew I was dying but hope presided over fear, and for a while I convinced myself that the pacemaker, the internal defibrillator and the medication would somehow, despite evidence to the contrary, if not make me better, at least keep me alive. I realised this was improbable around this time last year, when I collapsed in the car-park of our local hospital. From that moment fate gathered me in its arms, whisked me through A&E and up on to the cardiac ward, where my feet barely touched the ground before I was transported to the Golden Jubilee Hospital in Glasgow. Two weeks later I was hooked to a drip, drained of fluid and in danger of disappearing in a room of washed-out pastel and exclamation marks.

For forty eight hours Mr D and I were suspended between hope and fear; hope that my condition could be stabilised enough for me to be added to the urgent transplant list, fear that I had passed the point where I would be considered well enough to survive the operation. In those two days we held hands and hoped. We had a brief discussion about what would happen if I didn’t make it, followed by a longer discussion on what our future would look like when I got out: dreams, aspirations, hopes. We sat side-by-side and looked death in the eye and together stared it down. I went from being terrified at the thought of a transplant to wanting, more than anything, for that to be possible. And then it was: I was on the list and I ricocheted between hope and fear, hope and fear.

images (2)I was still high risk and there were a lot of unknowns. Would they find a donor in time? Would it be a good match? Would I get through the operation unscathed? Would I get through at all? How would I feel when the time came? If the time came?

Friends, family and people I’d never met prayed, meditated; sent reiki, positive energy, hugs. Visitors were limited but those that could came and those that couldn’t phoned, texted and sent emails. One friend said she would give me her heart if she could, another sent me a penguin a day to make me smile, another exchanged texts late at night about his impending fatherhood, yet another emailed about her daughter’s wish for snow for her birthday. My parents worked a tag team with Mr D, covering when he had to go home to wash clothes, move house, see his daughter. There were beautiful books of poetry and French literature delivered, luscious hand cream (a real treat to combat my hardened skin, dry with the after effects of surgical cleansing gel). Cards filled with kind words appeared alongside pictures ablaze with stick people in garish colours to stick on my notice board. More hope, more positive energy, more beauty than I had ever known.

On Christmas Eve, Mr D sat in his festive jumper featuring a penguin in a Santa hat; we drank fizzy elderflower and rose juice. The lights on the tree donated to me by a member of staff, flashed on and off – hope, fear, hope, fear, hope, hope, hope. A parcel arrived with my favourite chocolate; a present of love and understanding from a new friend who knew what it was like to shuffle in my slippers. And I cried.

Several hours later, alone in my bed, groggy from sleeping pills, a nurse stroked my arm and whispered that there’d been the offer of a heart. A family grieving on one of the most memorable of dates, still brave enough to honour the final request of their loved one. The most amazing gift I’ve ever received and one for which I’ve been thankful every day since.

Day-by-day, week-by-week and month after month, I’ve achieved things I thought were no longer an option for me. I’ve walked up stairs, ridden a bike, climbed hills (little ones but still…), caught up with those who loved and supported me, spent weekends away in Happy (our campervan). Each time I do something new I find myself laughing with delight; my face aches from smiling. I’m grateful every day for all the people who helped me through this – Mr D, the surgical and hospital team, my family and friends, strangers, someone else’s family and a person I’ll never meet. The triumph of hope over fear.

For information on how to become a donor and stories on the difference organ donation has made to the lives of others visit: Organ Donation Scotland; Organ Donation UK; British Heart Foundation.

All in the detail

My plan, since my last blog, had been to concentrate on the first couple of chapters and synopsis of my LPoW in preparation for my first meeting with my mentor; life however, had other plans.

Following what had initially been a successful blood transfusion, my body decided to have a further wee wobble (who can blame it after everything it’s been through recently), and I’ve spent the last couple of weeks pinging between the hospital in Glasgow and the local A&E department. My temperature walked a high-wire of degrees and my white blood cell count plummeted, recovered slightly, then plunged again. Am I concerned? Damn right I am but for now, I’ve decided to leave the worrying to the experts – after all, I’ve been warned to expect a less than settled ride in the first year post-transplant.

All of which means I’m now running behind on my writing schedule!

On the plus side, I’ve managed to have my memory nudged on the sensory experiences particular to hospitals, all good information for my LPoW. I’d forgotten, for example, how the smell of the tape used to stick down the cotton wool after having blood taken, reminds me of a pine woodland after rain; or that I could identify which doctor or nurse was about to come in to my room by the cadence of the footsteps in the corridor; or that the taste of the tea lacks coherence, there’s an individual graininess to each mouthful, despite the fact it’s the same brand we use at home. All details that add colour and form to a piece of writing, that bring it alive and make the reader want to invest in it, or at least that’s what I find when reading.

Cheating at Canasta For me, the short story writer for whom I have the utmost respect (and a slight literary crush if the truth be known) is William Trevor. In one sentence he can characterise a person with such precision and insight that you feel like you know them immediately. His stories invite you inside, you’re no longer an observer but a participant (unless he wants you to remain at a distance), and at the end of the story you can’t fail but to walk away affected in some way. His real genius is that he makes it seem so simple: the sentence structure; the POV narrative; the settings; the story. Yes, he makes it seem simple but …

Over the weekend I edited and submitted a short story to the Bridport Prize. It’s gone through numerous incarnations and I was as pleased as I’d ever be with the ‘finished’ product. To unwind, I read Cheating at Canasta by William Trevor and my heart soared and then sank just a little. What I noticed most of all was his absolute attention to detail – every word counts, every sentence adds to the story, nothing is gratuitous, nothing a distraction.

As I write this, it occurs to me that enforced tripping between hospitals might not be the worse use of my time. Not only was I reminded of the importance of detail, I also spent time in the presence of other short story writers – James Salter, Alice Munro, Lydia Davis. I edited a friend’s novella for her MLitt dissertation and helped Mr D polish the first few chapters of his novel. And I made notes and notes and more notes.

And there were other details that prompted memories: a Facebook video of a friend’s parents in the US dancing at their 50th wedding anniversary; a camping trip with friends where I got to hear a laugh I love and hadn’t heard for too long; Mr D’s smile when I caught him looking at me; an unexpected card from a newish group of friends (old friends of Mr D); the shared delight of another friend who won a competition to be pampered; a ‘phone call from a cousin I hadn’t heard from for a long time; a shaft of early evening sunlight on the chair that belonged to my late grandad.

Writing, as living, is all in the detail.

The Celebratory Living Room Dance

It was Friday night, I’d just returned from an impromptu overnight stay in Glasgow at the Golden Jubilee Hospital (only the best establishments for me) and I was worn out and generally feeling defeated by life. After crumpling into my favourite armchair, I opened up my email inbox, glanced down the messages with little enthusiasm, and paused. And held my breath. And felt the goose-bumps rise on the back of my neck. I did it! My application to the Wo-Mentoring Project had been successful and I was being welcomed by my new mentor Karen Campbell.

Celebratory Living Room DanceI don’t know if it was the news alone, or the fact that I’d received 3 pints of blood (rocket fuel as referred to by the nurses) but I was on my feet, grin plastered across my face and arms thrown to the sky; otherwise known as doing the Celebratory Living Room Dance. Mr D cheered me on and sang an upbeat version of a song – the tune familiar but the words unlikely.

There it was. The first milestone on my writing journey. The first tick on my writing to-do list.

This Is Where I AmFor those of you who don’t know Karen’s work, I highly recommend it. Her last novel, This Is Where I Am, looks at the realities of life as a refugee in Glasgow, alongside the loneliness and quiet despair of a Glaswegian widow and the friendship that develops when they’re brought together via a mentoring programme.

My hope is that Karen will be able to help me work on a longer piece of writing (notice how I tiptoed around the ‘n’ word) based on my recent experience ‘on the list’ for a heart transplant; a write-what-you-know approach for my first attempt.

The writing journey is often a solitary one, which for me, makes it even more important to grab opportunities to work with other writers. I’m already privileged in that I completed my MLitt at the University of Stirling with a group of extraordinary and talented people (heretofore known as the Write-n-Rant Collective) with whom I’ve remained in touch. Under the tutelage of author Paula Morris our group blossomed from students into fledgling writers and since graduation we’ve celebrated our successes and commiserated our near-misses. When you’re walking a long road, there’s nothing better than having a support group to cheer you on, and pick you up when you fall.

In the meantime, I’m recuperating from my latest bout of hospital food by sitting at the keyboard, working up the sketch of the first two chapters of my LPoW for discussion at the first meeting with my mentor. Watch these fingers fly!

New Year, New Heart, New Life

New Year’s Day 2014: I wake to a view of the Clyde and a heart-beat so loud I feel sure the whole ward can hear it. Mr D appears at my bedside with smiles, kisses and the presents we couldn’t open on Christmas Day. I’m scarred, bruised and swollen, but I’m still here! My body aches from surgery; my face aches from smiling. The hospital room is the colour of jaded sunshine and I’ve come to identify the approach of doctors and nurses by the rhythm and timbre of their footsteps. Happy New Year!

 *

Blink. Here I am in the second quarter. I can now walk upstairs and still breathe – it makes me giggle with delight every time. Every time. Mr D accompanies me on an (almost) daily constitutional, often to the old bridge where we’ve watched spring slink in on high-tides and sun-wrapped daffodils. My lips, toenails and cheeks have blossomed pink and a host of friends and family have enveloped me in love to help me heal. I’ve bullied my wasted leg muscles, and each time I’ve cried in pain or frustration at my lack of progress, Mr D has rubbed my calves and talked-down my fears – he hasn’t just cheered from the side-lines, he’s walked beside me every step of the way.

thI1GYEBMYIt’s not all been about recovery; other things have happened. I’ve had two short stories published, learnt my first few chords on my new guitar (I can now belt out a halting rendition of Me and Bobby McGee, muddle my way through Baby Can I Hold You, and mess up You Better Move On) and together we’ve bought Happy, a campervan (I know, but it is and we are), to take us on our journey into the summer and beyond. Our first real outing was a weekend at the Aye Write festival in Glasgow, rubbing shoulders with the authors in the green room, thanks to Mr D’s PhD. We went to talks and discussions that soaked us in inspiration; motivating, exciting, provoking.

I’m lucky, so lucky, in so many ways. I’m lucky to be here – thanks to the extraordinary gift of a stranger and their family; I’m lucky to be surrounded by people who could lift even the most leaden spirits; lucky to be able to spend time with like-minded, lively, challenging friends and family; lucky to live in Scotland, a country where healthcare is still free and available to everyone; lucky to be cared for by some of the best medical professionals in the world; lucky to have found the person who makes me smile inside and out.

At the end of last year, I walked headlong into darkness. I was terrified. But I stumbled, scathed, out the other side. It wasn’t, isn’t, hasn’t been, easy but it’s been worth every moment of fear and pain. There was no epiphany, just an awakening of all the hopes and dreams that I’d slammed the door on during the last few years of my illness. This blog is my way of saying thank you, to everyone, for everything. It’s a reminder that in order to fully recompense the kindness of someone I will never meet, I intend to make every, single, moment, count. Who knows where it will go but I can’t wait to find out.