Three Pieces

THREE PIECES Fran Macilvey

To Anya, who cannot speak And has a lot to say

THREE PIECES

Introduction

FRAN MACILVEY

During the summer of 2022 Fran Macilvey, a writer and speaker on disability, social inclusion and empowerment met people with long-term neurological conditions to understand more about their different experiences and hear their ideas. The meet ups were the first steps of a year-long project to improve the support provided by the Midlothian Health and Social Care Partnership.

Three Pieces is a creative response to what Fran heard and a call for careful listening and further action.

Three Pieces

Bill Copeland: Introduction, “Line of Absurdity”, 2018 (A collection of poems)

THOMAS Thomas, a large, strong man with hopeful dreams, pursues his own, careful path. It winds along a cliff-top, so there is not much space to walk, but the path is clear, and any obstacles there may be, are well known. Many people have walked this path before him.

Feet firmly on the ground, Thomas strides ahead in a steady rhythm, as he has done for many years. He is familiar with every wisp of grass, every lift and curve of the roadway. He has no grand ambitions: only to get home and rest after a long day. He has been up since six, and by the time he has finished his work, he will probably be in bed by midnight.

In his left palm, the fingers of his daughter’s hand rest trustingly. Aged now four, she has graduated from piggy-back to walking on her own, though she skips over cracks that appear occasionally in the old verge. In his right hand, Thomas carries a cardboard box tied with string – groceries for his wife – and on his back are the tools of

Fran Mcilvey

“Look for a thought path that is free of the obsessions of preparation, productivity and progress.”

his trade – a pick-axe, a spade, small planks of wood, some nails –in an old rucksack, frayed with long use, but much loved.

Halting his peaceful walk, with a jolt of surprise, his feet encounter a crack across the road, which widens gradually then splits again, running ahead of him like an eager puppy, parallel to the verge. Without much thought, he crosses the gap, then proceeds with one leg on each side of the long split. Thus, he continues his progress home, but less comfortably and more slowly than before, since there is less freedom of movement and he has to place his feet more carefully. The jolts of his new, constant adjustments are small, but noticeable. They bring unfamiliar discomforts. His daughter looks up questioningly, not seeing another crack appear on the path, and another.

Soon, several long cracks appear, breaking up the surface of the pathway and snaking into each other, disrupting the route until it is a tracery of lines and ridges, each imperceptibly widening and deepening, and all tending to tributaries that might hive off in any direction, indicating imminent collapse.

Thomas sees that the road is no longer predictable or safe. Intent on moving forward with care, to keep his footing, he steps and balances uneasily on the few remaining patches of firm tarmac that lie ahead. Aware of new danger in each movement, he lifts and carries his daughter, though her weight also impedes his progress: And, he must look down constantly to check his footing so that he does not trip and slip into the mess of cracking ground. What

might happen if he fell?

While his feet play ‘stepping stones’ in unconscious imitation of his daughter’s childish games, progress slows to a crawl, along a path that is disintegrating. While Thomas walks, jumps and shifts to keep his balance, the sun is gradually lowering in the sky, leaving him to wonder what will happen when the shadows crowd around him. Will he be able to find his way forward safely?

He remembers that his friends are waiting for him at the end of the road – not far now – and so he smiles, as he always does, hoping they will catch a glimmer of his grin in the shadows of evening. And to their often-repeated question, “You all right?” he calls,

Progress is slow and increasingly fraught, while those waiting up ahead grow impatient: “Hurry up! We’ve been here ages…!” They squint through the gloom, seeing only the obvious bulk of Thomas’s body, blurry in the darkness. They see the glimmer of his smile, but not his worried eyes, his grimace, his uncertainty or the sweat on his forehead.

Skite and THUMP! Thomas falls suddenly forward. The box of groceries is thrown out into the dark and scattered. Pressed down by the weight of what he carries, his hands and knuckles are torn and bleeding and filled with grit, while his friends hear only the hard scrabble of his boots as he tries to find purchase on the road that

Fran Mcilvey

“Yeah, I’m fine. Just…”

is no longer a road but a cratered mass of sticky obstacles; there is dust in his mouth. Heavy against his shoulder, his daughter lies on him, stunned. With his right hand he finds a grip and clings on, his body sinking beneath tar, grit and stones.

“Help!” he manages, bewildered by pain, the fear, the effort of hanging on.

“Coming! We’re coming! Where have you gone?”

“I’m here! Right here… Hurry up! Please?” He spits to be heard.

A scuffle of feet and a patter of mixed hands on his back, lifting off his daughter, cutting the straps of his rucksack – “Sorry about this…” – lightening the load to lift him clear.

But – Oh God! – they are now becoming stranded in the same bubbling, sticky mess that Thomas navigated to this point.

“First rule of first aid…” he mutters, laughing between relief and exasperation. “Don’t get caught… There’s some tools…some bits of wood in my rucksack. Maybe that’ll help…”

They lift clear the planks from the bag – “These?” – and he nods numbly as they place them to form a brace of sorts, a few brief patches of smoothness across which they can clamber, crawling, linked arm-over-arm, and pull him to safety. Ungainly, but, lying in a heap at the finish, they congratulate each other, drunk with relief

and the joy of success, delighted that they were nearby, and able to help, the night the road disappeared.

Fran Mcilvey

EVELYN

I was a restauranteur: I leased a space in Penicuik and made it my own. Once I’d sorted out my sauté from my fricassée, my julienne from my brunoise, fine-tuned the short menu of tasty favourites and found a chef who saw what I was trying to achieve, my business dreams made it through from year to year. I worked hard. I had no romantic attachments to absorb my thoughts, no children to care about. Which sounds heartless, I know; but I knew it would all change, one day. Like my friends, I’d probably find a partner, get married and settle down into more domestic routines.

Meantime, I relished my freedom, the fact that I could make something work and the sheer thrill of encountering long odds and pulling off a victory – ta dah! After six years of small profits – should I quit, or would another year see a better return on my investments? – suddenly the restaurant gleaned not one, but two great reviews in the weekend papers, and finally I was in business. Like really: eight employees, responsibilities, and profits from which I could afford to take a modest, regular salary and enjoy a two-week holiday during the July trades each year. Not bad for a barely-qualified school-leaver from Surbiton. I loved the buzz. I adored the people who worked with me, and all the customers, the regulars. And I felt proud, helping so many in our community get through their lives.

Fast forward another six years – those years went fast! – I started to notice my fingers were numb. Which might be okay when you’re fetching something from the oven in a hurry, except that the constant blistering was a worry that never seemed to clear up. My husband of three years – darling Dave, such a charmer, honestly! –started to accuse me, in his lazy, observant way, of stumbling in my heels.

“Been drinking, have you?” he’d ask, eyeing me up.

“No, Dave. When would I get time to drink?” I answered quickly, knowing – but never really knowing – something was definitely not right. I was always tired and put it down to chronic stress. There was like an itch that needed scratching at my back that I could never reach, intensely irritating. Was it physical, or was I simply too busy to stop and think? No idea, and anyway, someone had to keep the whole show on the road. Nights were the worst. While Dave slept, I tried to get used to cramps, sweating – and before you ask, no it wasn’t menopause, I was only thirty seven – and pains in my joints. My wrists were bad. May not sound like much, but it was scary, carrying trays, deliveries and hot dishes, knowing I might drop them any time. And always, underneath the layers of prickling discomfort, there was the fear. When the fear found me – gotcha! – if I thought about the fear, I would break out in trembling, my face instantly shiny with icy sweat. It was horrible.

Fran Mcilvey

I managed, though. I kept going alone and for far too long, really, because I didn’t want anyone to think less of me. And anyway, I didn’t know what else to do. Every day, people were depending on me, so I carried on as best I could.

The worst day… Which one should I pick? Probably… That time in the car.

I’d been sitting at the lights. A red light, and it was a busy junction. Not a bad time of day, though, there wasn’t a lot of traffic, thank God. Ten-ish, maybe. And I’d made to move off when the lights turned green, only I couldn’t move. I had the thought – “Here we go, then…” but I couldn’t move my hand to release the hand-brake. I remember closing my eyes and praying, quickly, “Oh, God, please, not here, not now, please…!” and then I breathed out and somehow it worked enough until I could get home. I couldn’t really feel anything, though.

I sat in the driver’s seat until I saw Dave coming up the street – it must have been about four hours later, he’d have been wondering where I’d got to – and he knew there was something wrong. Didn’t say anything, but he opened the car door, got me out and up to the house, got his keys…

I have my diagnosis. It’s complicated. And Dave works during the day. It’s different. I miss my old life. I have other things to worry about too, now – I don’t hear as well as I used to, I get these flare ups and headaches and my kidneys complain if I sit too long. But I

ignore all that as much as I can. It’s the only way we can have a life that feels anything like normal. Only, there are lots of appointments to keep track of, GP check-ups and hospital call-ins for half a dozen different things. Which interferes with everything.

Thank God we don’t have children. This constant preoccupation must be kind of like having a child, but instead of neonatal checks and immunisations, instead of the promise of a baby growing up into a beautiful person, it’s all blood tests and new drugs, monitoring, adjustments, tinkering with things and not really knowing what’ll happen.

Small things. The way it messes with my head. I get depressed and can’t remember. It’s like an obstacle course in here, with my walker, my tray trolley from the OT, my powered wheelchair, my sticks and all that. Not much room left for us, to be honest, which is fine, most of the time. When the phone rings, the doorbell, I don’t hear it, or it takes so long to get there, I miss a lot of calls. I do a lot of our shopping on line – I can manage that – but just sometimes, I wish I had family nearby. I’ve had a few falls, but I manage.

I think Dave is going to leave me. One day, when he’s gone to the shops, he’ll just not come back. And I wouldn’t blame him; really, I don’t. He’s two years younger than me and always wanted kids, so how could I hold him back, when he has so much life in him? Anyway, I do what I can, and it’s fine really. Would you like to stay for a coffee? There are china mugs up in the cupboard we could use, for once.

Fran Mcilvey

The best thing about speaking to others is You find out Yer feelings are quite normal. Everyone feels this way, sometimes, but I have a question What happens if the drugs stop working? It’s just a worry I have, not knowing what, after all these years

The worry, the grief, you know? And it’s not as if I want a lot. A bit of company now and then, a bit of a laugh. And someone to help get my shoes on so I can go outside.”

Designed by Albie Clark