A bird in the hand

In my hand (well, trapped between the keys of my computer) is the equivalent of a new-born spring chick – the completed manuscript of my first book. Key words to note: completed and manuscript. After a gestation period longer than that of an elephant, my book made its first appearance mid March. Since then, I’ve fed and watered it, burped it, changed its nappy and passed it around a few people for admiration, validation and reassurance at my ability to be a responsible parent.

Over the last couple of months we’ve grown together, my book and I, and I’m now faced with the terrible realisation that I need to send it out there, into the world, to find out if it can make it on its own.

spring chickOkay, that’s more metaphor than enough for one blog post. The reality is this: I’ve written a memoir based on the sixteen days I spent on the urgent transplant list, waiting for a new heart. Sounds morbid? It’s anything but. I won’t lie, there are dark days but throughout, the narrative sparkles with joy and laughter. Above all it’s a love story, not only mine with Mr D but also the one with my friends and family. For sixteen days I waited, on the brink of death, for someone else to die. Difficult both physically and emotionally. I didn’t wait alone. On Christmas Day, my donor and their family gave me a gift more precious than any other. My own friends and family made sure I was (and still am) able to receive and make the most of it.

book birdBut I digress. This post isn’t about the content of the book, it’s about how to set it free. How and when do I release my Caxton bird-in-the-hand skywards in the hope that it can fly?

To get to this stage, the first edit was easy – read-through and correct all the obvious spelling and grammar mistakes. Next, kill, or at least mutilate, all my darlings (at least most of them – the ones I missed were culled by a couple of ruthless editor friends). Follow this with reading for continuity, flow and cadence. And then the hard part.

Close reading and editing. Sentence by sentence, word by word, until my eyes crossed and watered. This stage, in my experience, is the trickiest. Get too up-close-and-personal with the narrative and you run the risk of losing sight of the bigger picture: maybe it’s okay to use that verb again, perhaps there is no better word than this one. It’s difficult but worth it. Which leaves me with the shiniest and most robust version of my manuscript.

champagne uncorkedLike every anxious parent (I’m wringing the last droplets from this metaphor), I’ve equipped my fledgling with all the survival skills at my disposal, what happens next is out of my control. It’s time to leave the nest. To fly.

If I succeed in publication I’ll celebrate, likewise if I don’t. A manuscript, complete, is an achievement in itself and should be celebrated. As the saying goes (I think), I’ve come a long way to get this far: time to pop the bubbly!

Now, what to do with the empty nest.

Immortal Memory

Still on the theme of literary firsts, I had been invited to give the Immortal Memory at a Burns’ Supper, organised by F, a friend of mine, to raise money for the Fife branch of the Scottish Green Party. To be honest, although I’ve been to a couple of Burns’ Night celebrations, I wasn’t really sure what the Immortal Memory involved so, in my naivety and because it was for a friend, I agreed. After which, and the key point here is in the word after, I decided perhaps a bit of research would be helpful. So I googled, panicked, asked a few friends and began to hyperventilate. A lot. For quite some time.

indexWords such as big responsibility, key-note address, significant, well-researched, lengthy, humorous, were used. I decided to lie down in a darkened room. For quite some time. And then I remembered one other phrase that cropped up: personal tribute. That, I thought, I can do.

I am, by birth, a Yorkshire lass – born in Barnsley but uprooted at an early stage to the Scottish Highlands, where I was schooled before being let loose on the world at large. Yet, even in my earlier years, I was aware of Scotland’s national bard. My grandfather was a Scot from rural Perthshire on whose bookcase, in the corner of his living room, several books of Burns’ poetry rubbed spines with, amongst others, Mandela’s Long Walk to Freedom, In Place of Fear by Aneurin Bevan and Robert Tressell’s The Ragged Trousered Philanthropists. Often, before dinner (or tea, as it was in those days) he would recite The Selkirk Grace – or ‘the poem about having meat, grandad’. On other days, for no fathomable reason, he would stand me and my brother and sister up and stack us, oldest to youngest, behind him, whereupon he would march us around the house singing Scots Wha Hae.

Through school, in Yorkshire and Scotland, and university, in Scotland and America, I studied and grew to love and appreciate many of Burns’ poems and ballads. That he wrote more than 550 in his short lifetime, leaves me breathless with awe: as well as the wide range of themes he covered. With so much to choose from, I am sure that anyone willing to delve into his collected works, would find something to suit their tastes and sensibilities.

As for the language; my first experience of reading, as opposed to hearing, Burns was in primary school in Doncaster, where we studied To A Mouse. Did I understand the language? Not a bit but oh how I loved the way the words felt in my mouth, how they rolled off my tongue: sleekit, cowrin, bickering brattle, sleety dribble, cranreuch cald. I may not have understood each word, I didn’t need to, I could feel them. With his description I shrugged off my own skin and slipped inside that of the mouse; felt its heart beat, fast and furious. And isn’t that the genius of any writer, to be able to lure their reader deep into the depths of the story, of the character, to make us believe, to care.

Tam o ShanterFor those of you who love Burns, I’m sure you have a favourite. I have two (because, as we’ve established before, I’m not so good with the definition of the term favourite) – the first is Tam o’ Shanter. In my second year of university, I spent a semester in America and this was one of two Burns poems we studied, the other being To A Louse. Reminiscent of my primary school encounter with Burns, I struggled to get a grip of the language with the rest of my classmates but loved the imagery: ‘Nursing her wrath to keep it warm’; ‘But pleasures are like poppies spread, / You seize the flower, its bloom is shed’; ‘There sat auld Nick, in shape o’ beast; / A towzie tyke, black, grim, and large,’. The rhyme and metre, the change of pace, the tension:

Tam tint his reason ‘ thegither,
And roars out, “Weel done, Cutty-sark!”
And in an instant all was dark:
And scarcely had he Maggie rallied,
When out the hellish legion sallied.

                                    From Tam o’ Shanter by Robert Burns

F pipingThe real appreciation of the poem came much later, performed by F at another Burns’ Night celebration. That’s when I really understood the brilliance of the language. The poem came alive in the telling, not least because F, who comes from the same part of Scotland as Burns, really inhabits each and every line. He was brought up on the bard – his father performed at many a Burns’ Supper, as did his grandfather. By a quirk of fate, his father also died on Burns’ Night, which seems somehow appropriate.

The other favourite of mine is A Man’s a Man for a’ That. It reminds me again of my grandad; of his socialist ideals. It reminds me of the sort of world in which I’d like to live, where riches come not from material possessions but from friends and family, from a sense of community. A more equal world where we all watch out for each other, where we care of for those less fortunate and for our environment. Idealistic, maybe, but isn’t it a world worth hoping for? A world worth working towards?

What though on hamely fare we dine,

Wear hoddin grey, an’ a that;

Gie fools their silks, and knaves their wine;

A Man’s a Man for a’ that:

For a’ that, and a’ that,

Their tinsel show, an’ a’ that;

The honest man, tho’ e’er sae poor,

Is king o’ men for a’ that.

                                         From A Man’s A Man for a’ That by Robert Burns

When my grandad died a few years ago, the family asked that A Man’s A Man be played at his cremation. ‘Reet you are,’ said the Barnsley undertaker, ‘who’s it by?’ On being told, he agreed to sort it out. A couple of days later, my uncle visited the funeral parlour to check on arrangements:

‘There’s been a bit of a problem,’ said the undertaker.

‘Oh right, what’s wrong?’ asked my uncle.

‘We couldn’t findt Robert Burns version oft song you asked fo so we got this un by Ewan McColl instead. Will that do?’

‘Yes,’ said my uncle with a wry smile, ‘that’ll be great.’

IMG_1321At Saturday’s celebration, F performed Tam o’ Shanter, Mr D played and sang A Man’s a Man for A’ That and I gave the Immortal Memory.

We ate haggis, drank whisky and had fun. It was, I think, a fitting tribute to our National Bard and a good way to remember two other Scotsmen no longer with us.

Friends for Life

The reason, in case you’re wondering, why you haven’t heard from me for a while is that I’ve been writing – yep, you heard correctly, and most days at that! The structure has finally come together and the LPoW now has a shape I can work with. The most recent chapter included a section about friends and that, combined with a recent art exhibition I attended, inspired this blog. Let me explain.

Just over a week ago, Mr D and I travelled to Glasgow to meet one of my fellow transplant patients and visit his art exhibition documenting his remarkable story. ‘The Shared Heart’ features portraits of many of the hospital staff, painted by B from photographs he took whilst still in intensive care. His wife is also an artist and she had, with his permission, photographed his period of recovery beginning immediately after his operation whilst he was still unconscious and ending a month later when he left hospital. In addition, several of her sculptures were on display, representing her own emotions through their difficult time.

I’ve met several people who’ve had heart transplants and each of them has their own incredible story to tell but what has always struck me is the positivity and resilience that radiates from them. Some of them I know a little better than others: P, a woman whose baby was delivered prematurely by emergency caesarean section so that she could be put on the list for an urgent transplant, has one of the biggest smiles I’ve ever seen and never fails to lift my spirits; C, a man who received his new heart just hours after being listed, whose optimism for the future is addictive; and B, whose story includes over 3 months in intensive care, kept alive by an artificial heart, and getting married on what was believed to be his death bed.

untitled (5)These are just outline sketches of their stories because they are their stories and theirs alone to tell. What I have in common with these people (other than our second-hand hearts) is the understanding that were it not for the love and support of our family and friends we would, most likely, not have survived.

In ‘The Shared Heart’ there were two pieces that I found particularly moving. The first was one of the sculptures – a glass bowl filled with water featuring a face looking up from the bottom. It represented the times when B’s wife, so overwhelmed by the situation, would swim in the pool of the hotel attached to the hospital and sing under water to release her emotions. The other was B’s portrait of his wife; the lingering haunted expression behind her eyes, visceral and raw, captured in the way only someone that knows her well could do.

And here’s the reason I wrote this blog. Friends.

The love of family and their concern for your well-being is oftentimes a given; they’re part of you and you of them. Friendships are courted and nurtured; some become something more and, if you’re lucky, some last a long time. And I am lucky. I’ve mentioned them in my blog before but writing about my transplant experience made me really appreciate the value of true friendship. Seamus Heaney, one of my favourite poets, captures it with grace and eloquence in his poem ‘Miracle’.

Not the one who takes up his bed and walks

But the ones who have known him all along

And carry him in –

Their shoulders numb, the ache and stoop deeplocked

In their backs, the stretcher handles

Slippery with sweat. And no let up

Until he’s strapped on tight, made tiltable

and raised to the tiled roof, then lowered for healing.

Be mindful of them as they stand and wait

For the burn of the paid out ropes to cool,

Their slight lightheadedness and incredulity

To pass, those who had known him all along.

To my friends: thank you.

What a difference a year makes

December 23rd

From the window I see a river, wind-whipped trees, a sky all but obscured by dirty clouds. Same as last year. Same but different. The river is the Forth not the Clyde, the view is from my sofa not a hospital bed. And I am different too. I am the person who dances to White Christmas in the supermarket aisle, who bounds upstairs with a giggle in each step, who walks without pause, cycles with an enthusiastic wobble. Gone are the days of lying on the floor fighting for breath, crawling from the living room to the kitchen, crying in the night rigid with fear and unable to move lest my next breath not come.

There are other changes – physical and emotional. I weigh a little more but care a lot less. A soft downy hair covers most of my body; I’m scarred but no longer scared. My face is steroid-rounded but the grey base-colour of old is tinged pink, with lips that no longer need cosmetic enhancement just to look the normal side of healthy.

December 25th

A year ago today, at 10.45am, they wheeled me in my hospital bed, down a long corridor, past intensive care, before stopping a few feet from the entrance to the operating theatre. Time for Mr D to say goodbye – no non-theatre staff beyond this point, the notice pinned to the wall dictates. The staff discretely talk among themselves to give us time to say goodbye, except we don’t, say goodbye that is, he just leans over, kisses me, brushes his hand along the side of my face: see you later he says. I give him a weak smile, he returns it amped up with hope, fringed with half-hidden anxiety. When we move again we leave him behind. I don’t look back but I know he watches me go through the double-doors. Minutes later I’m treading time in a world suspended between life and death. I will remain there for the next 48 hours and will remember nothing.

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Mr D occupied himself with guitar playing and crap TV. He ate Christmas dinner alone in my, now empty, hospital room and had no-one to pull his cracker. He returned to his hotel room and between bouts of texting, paced and dozed. Family and friends kept in touch throughout the day whilst he struggled to hold on to reality. After hours of waiting he walked back to the ward. No word yet but they directed him to the waiting room for intensive care. Two more hours more and then word that I’m through and in post-op. It’s 8pm. A further couple of hours and the surgeon appeared, scrubbed and exhausted, a full 24 hours since he received word that a heart was available. His Christmas Eve was spent grasping at sleep between hourly updates. The operation began at 1.45pm and finished at 6pm. I’m glad these details were kept from me until after the event. He says the operation went well, text-book. Mr D is delighted but unable to shake his hand, an unexpected reaction he tells me later. He rectifies this the following day.

untitledThis year I wake just after mid-night on Christmas Eve. Thank you I whisper. And to you, I whisper, leaning over to kiss Mr D’s shoulder before drifting back to sleep.

Christmas has always been magical for me but more so this year. We spend it with family: unwrap presents, drink fizz, walk in the frost-ridden countryside, play silly games, laugh and sing. To absent friends and the kindness of strangers, we toast at dinner.

But for the brilliance of my surgical team and the courage of a family I’ve never met, I wouldn’t be here today. I am in awe of their selfless generosity – they gave me the most amazing Christmas present imaginable; a future.

But for my family, friends and Mr D, that future would not have been so hard fought for or so much appreciated. It hasn’t always been easy but it has been worth it. Every moment of it.

Thank you.

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For information on organ donation see: Organ Donation Scotland and Organ Donation UK.

The Way We Look

This morning I looked in the mirror and searched for me. I knew I was there but I couldn’t quite make me out. Over the last three days, my face has morphed Kafka-esque into that of a hardened- drinking, outdoor-weathered, apoplectic beetroot. It wasn’t unexpected.

I’m back in hospital, being pumped full of high dose steroids to counteract an episode of rejection picked up in a routine biopsy at the beginning of the week. It’s not uncommon, they tell me, for this to happen in the first year post-transplant. Add to that the fact that they’ve recently changed me onto a new anti-rejection medication and there’s even less of a surprise. But still it needs to be treated. And now, in steroid overload, body bloated, I wait and trust in those that know best; until the next biopsy at the beginning of the week.

The way we look

The last time I didn’t recognise myself was a fortnight ago. I stepped out of a bedroom into a full-length reflection and all I saw was happy. A smile devoured most of my face and dimples swallowed up the remainder. My boots were high, my dress long and jewels lit up my marginally-less-mussed-up-than-usual, hair. A gaggle of girls, glasses of fizz, a rainbow of nails and autumn sunshine crowded into the farmhouse sitting room. Outside, bagpipes summoned people to the barn. The room emptied of all but a few and my dad, smile rivalling my own, hesitated on the threshold, unsure whether to cross over into the smog of perfume and hairspray and girlie indulgence.

On the way out my best-friend L stopped me: ‘You look great, and just the right amount sexy. Take time to breathe, remember the day, it’ll be over before you know it. Don’t miss it.’ We followed her out, across to the barn, a purple streak in glitter sandals: my nephew with his painted nails (the girls loved helping him with that); my gorgeous niece and soon-to-be step-daughter, all clunky books and sassy cute; me and my dad. One of my closest friends piped my progress, another tried to take photos before bursting into tears. I hardly noticed the rain.

For a moment, as I rounded the top of the barn, I couldn’t see him. Amongst the crowd I spotted others – my oldest friend looking exactly as she had when we met in high school but with (slightly) more glitter; another ready to clack together her Dorothy heels. And then he was there, Mr D – be-kilted in crazy spray-painted leaves, looking at me in a way I’ve never managed to look at myself. We disappeared inside our smiles.

That’s the look I remembered this morning, in front of the mirror in the hospital bathroom. And in a moment of magic, the beetroot disappeared and I realised I was there all along.

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.

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.