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.

Amongst friends: music, camping, laughter and faux fur

There’s been little writing since my last blog and I make no excuses for it. Here’s why.

Lossiemouth: Picture endless sea and disappearing horizons and the flirtatious laugh of your best friend. Imagine stepping out of your campervan into a weekend community of shared smiles and cuppas, charity shops, fish suppers and home-made ginger bread – the lingering taste of salt on your lips, your fingers sugar-sticky. Feel the warmth of a faux fur coat given with a rib-squeezing hug; guitars and harmonies, fiddles, borrowed hot showers, the dance of rain and the barbequed smell of summer.

Ullapool: Picture a midge-riddled road-side stopover – reservoir sunset and the neck-tingling early morning sighting of a sea eagle, the moment where time paused in the shadow of a 7ft wingspan. Imagine parking on the edge of the sea; morning dog walkers, wagging tails and reflections of moored boats settling in the wake of the inbound ferry. Taste the home-grown berries for sale by the roadside, money deposited in a ‘trust box’, the coolness of ice-cream against your tongue.

Perth: Picture birthday cards from loved ones, bacon rolls in the garden, lavender and a contented cat lolling in the sunshine. Imagine your lover on stage, your friends cheering, a small girl blindly steering her pushchair back and forth, guitars and hats and motorbikes, coleslaw and over-cooked sausages. See the lightening split the sky, momentarily dividing the old bricked flats from the newly glassed shop, causing the old man on the bench to run for cover.

Dumfries & Galloway: Picture ancient burial chambers, guarded by standing stones – stoic sentries casting long shadows in the early evening sun, a starless night in the Dark Skies National Park! Imagine discussing your Longer Piece of Writing with a published and respected author while trying to contain the pleasure her words of praise and encouragement bring. Smell the freshly baked scones, bronzed crusts splitting with ease, a slick of melted butter coating your plate; the musty smell of yellowed paper in the second hand book shop, the incense burning amongst the Buddhas, kaftans and turquoise of the neighbouring nook-like store.

Glasgow: Picture two people arriving at the gates of Kelvingrove Park, tired and dishevelled and ten minutes too late to hear the daily bandstand music in celebration of the Commonwealth Games. Imagine the splash of colour and laughter of children in the play park, the queues and barriers blocking access to the museum, aching feet and anoraks. Hear the sigh of the water in the fountain as a penny breaks its surface, the bustle of the leaves and creak of the bark, branch bending under the couple’s combined weight.

Edinburgh: Picture the smile that splits the face of old and much-missed friends after a time too long – the heart-felt, arms thrown hugs that remind you of darkened pubs and cheap beer, dancing, air guitar and hungover happiness. Imagine street-side cafes and Fringe shows and fliers and the sensory overload of a capital city high on creative energy. Gossip and fizz. Talk of hearts and hair and handbags; laughter and a sense of belonging.

And now? Back to the writing.

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.