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Unseen Paths
Unseen Paths
Unseen Paths
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Unseen Paths

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What does it mean to be told your much-loved Mum has only two months to live?

That is the question answered in Unseen Paths as Philip and Claire sit in the doctor's office with their Mum and receive this life-changing news. It records their thoughts, feelings and experiences and those of family and friends as they work to meet all the new challenges they face whilst coming to terms with losing their Mum.

The book takes the reader inside the walls of a hospice and shows the amazing work done there as staff and family work together to provide end-of-life care their patients desire. It also attempts to help others who find themselves in this tragic situation.

LanguageEnglish
Release dateMay 27, 2018
ISBN9781386479611
Unseen Paths

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    Unseen Paths - Philip Jackson

    1

    When I was a young boy my mind was clear and free. I can see him standing there; he doesn’t look like me.

    For an instant, he sits by my side and we share a spirit that is only me, or only us. He knows I have changed and moved on in ways he failed to comprehend or foretell, pleading to see if there is still space for his unsullied approach to living. We embrace. The embers of innocence flicker, coaxed back into flame. Thoughts of who I was, and who I now am, flood my wavering mind. I’m still that kid, still a guy living this day on my own little island, in my own little flow. What made me - and who made me - rattle their passages through my mind, looking for an outlet to express the differences they made.

    Much has changed and so much has gone. Things I have forgotten, and events I hoped I would never see, stand in the space between then and now. Back into the album, now, with the rest of what’s left.  The memories of shared experiences stand out in my mind; all the others were discarded, some way along the road.

    I would like to think there is some history to keep: recorded elements of a life, to be picked up by those further down my bloodline, searching to find part of them that fits. A piece of a jigsaw brushed onto the floor and kicked under the sofa, rescued from the dirt. They lift it to the eye, put it in the right space and smile, for a second. The picture formed has helped them understand part of who they are and where they have come from. They are tying the past into the present.

    We want to belong somewhere. I want to belong both somewhere and to someone, not just for now, but in the past and in the future, too. The lines fan out in both directions. I think of a year and it opens like a box. Stories, memories and pictures all fall out. What we did, where we were, how old I was; where we went on holiday, special events, and things on TV - these all lie jumbled, on the floor. The pieces create their own picture, but for me, only; one day they will cease to be. Others around me have their own, convoluted newsreels going on in their heads, recalled on demand, or just because they spew into consciousness through the brain’s daily workings. 

    In reality, the memories are different to the actual events, altered and faded over time. Giving the past a fuzzy, gold-tinged hue - or should that be rose-tinted? They are the edited-down and distilled highlights of decades of life; the complete and unabridged version is locked away in my head, taking up a few of the trillions of synapses in my brain. Perhaps these unknown ancestors of mine will have the technology, in their grasp, to dive into that full version of my life. Roll up, roll up for the show of the century!  Experience first-hand living in 1984: the unmissable riding around on a bike, the breath-taking going down the stairs in the toy box, and the spell-binding having to eat boiled cabbage. Wow! This brave new world could be there for my great grandchildren, if they so wish.

    For those preceding generations, such ‘witchcraft’ has gratefully passed them by; memories, sins, thoughts, words and deeds have all vanished. All that remains for those Jacksons, Harrisons, Coopers, Westons, Davies, et al, are a few lines in the registry books and the wedding pictures from the late 19th and early 20th centuries. The awkward stares, fixed solemnity and their multi-coloured world, washed in sepia. Those pictures do not tell a thousand stories. From this distance, we are given just one line; the rest is lost. Make up a story about what you see, but it will be wrong. These photographs tease, showing people in my bloodline; they are connected to me, but there is no-one to show ‘how so’, anymore. They bring on only more regret.

    I have been deceived! I assumed life, as it was, would continue racking up the years and decades, in rows, for all four of us. That was the norm: Dad, Mum, Claire and Philip would just plough right on. I was wrong, I never thought about it, but that cast is once again filtering down.

    The word ‘if’, written and sung over for the ages; a two-lettered combination conjures feelings that nought can be done with. If I’d had these pictures when my grandmother, Dannie, and her sister, Bay, were here, stories would have been planted and fed. Questions would have been answered.  I would have sat there, listening, spellbound by their vivid yesterdays; I would have forever kept those yesterdays. To reminisce has to be among the favourite pastimes of those in their dotage. The past, the good old days; how things were. To sit there, in the warm embrace of happy memories and good times gone by; times when we were fit and young, fruitful and in control. Dannie and Bay would have loved that. Their worn and withered hands, jumping and moving with delight, in rhythm with the words coming out of their mouths; singing with happiness and laughter. What they got up to: hard but good times; all the time, the edited highlights, agreeing and discussing with each other, as they went, as to whether their recollections were right or not. To have the younger generation in the palms of their hands, drinking in the words, creating the images in their minds, as best as they can. All of this bringing joy to the old women’s hearts.

    There are glimpses, here, of their past: being drawn into a world of fun, parties, travelling, work and war. The fact I, in some part, am connected to all of this, is a joy of childhood. If only they’d been written down, from the transient thoughts of the mind, into the clean lines on each page; saving the lives of those already dead and adding words and music to the precious moments, frozen in time.

    Memory: the key to a life lived. If not shared now, then washed away, as a single droplet is, amongst the deluge. The Alzheimer’s patient, shuffling along the halls of her blank hospital world; they mirror the emptiness of her mind. The given nod toward solace is called the ‘reminiscence room’, containing trinkets of ‘the good old days’, in the hope of being soothed by something familiar.  It is the mere offering of a teaspoon of solace, to help with the frustration and confusion of a dying brain. Each cracked and broken connection leaves isolation as their only companion.

    Dannie was our father’s mother; a rock on which our century of inherited memories was built and relied upon. My sister, Claire, engulfed, as a baby, by the new world of talking, wanted to call her darling grandmother ‘granny’, but came out with ‘Dannie’. The slipped consonant of an infant girl managed to change her name for the rest of her life. ‘Dannie sounds better than granny and makes me feel younger’ she said, ‘I’ll stick with that!’

    Soon, however, Dannie walked into the fog. Dates merged, thoughts merged, memories bled into each other; changing her past; the truth distorted and lost forever. Frustration and confusion spewed out, in a present and past she no longer recognised, taking our Dannie away from us - and all of us away from our past.  She was replaced by someone else, inhabiting her frame, for the last years of her life. Before we had any idea of what had happened, the bridge had been drawn up, and we had turned, and walked away.

    The days roll on by, now, with memories barely noticed, seeping in alongside the ordinary. Bombarded by the familiar; why would I try to hold on to all of this? Why do I need to get it all down and tell our story? Don’t people want the fantastical and the incredible? Don’t they wish to be taken out of this ordinariness, given a torch into an exciting world where the mind can run wild?

    We can try to fly away from it all, to live in a dream, and hold on to something else. We can shut our eyes and be taken away by the words on a page, or the pictures on a screen. Go and live the dream and make a better reality for now, and in the future; push the past away, discarding it as too ordinary, for the likes of you and me. But flick the lights back on, and our eyes are opened once again to the same four walls that surround us. Things must be done: work needs to be worked, duty and procedure still reign, and they take our time away.

    This story is about that daily normality; it is swimming in a pool of ordinary. It is not of wild adventures and high times, but more to do with the little pieces of each day, in each of our lives. The metaphor of a jigsaw - that each individual piece of life is in the box, waiting to be brought together into some harmonious whole - is all very well. But, with the one I’ve got, some swine keeps nicking pieces I never knew I needed - and throwing in new ones that don’t fit or match!

    Each little piece, placed side by side with the next - and the next - I’m endeavouring to fit them together, to try to make some coherent form. Something that has been planned and strategised, down to the smallest detail. The reality is, all you are left with is a series of attempts to squeeze pieces in, which kind of look right and might have a chance of working, if given enough ‘encouragement’.  And the leftover pieces in the box. Some might say: ‘Yes! I meant that, I always knew this is how it would turn out’. Well, good for you, managing to control and manipulate life to be dutiful to you and do exactly what you wanted it to do; how convenient.

    The thought of wanting to know what happens - to be able to read the final page of our lives and see how we have ended up - may engulf us all from time to time, but only to wash away again, on the next wave. Is ignorance bliss?  Would the knowing what happens induce a greater sense of powerlessness? The slow puncture on a tyre, dragging us down to that certain, inescapable point of inevitability - rather than acting as a catalyst that leads to a life of fulfilment.

    Many embrace the thought of knowing: seeking out those who may shine their light into the future. Where to go, what to do, what not to do, what to avoid; someone, please help! Somebody, devolve me of this responsibility, this decision making.  Give some shape and order to these pieces in my hand!  Give me the box lid, so I can see what this thing is supposed to look like.

    I look out at the changing colours of autumn. Time is passing on. This year’s leaves depart, leaving space to be made for renewal. Their going allows the new to grow and flourish. Time passes through my fingers, as I lift and study a box of old pictures. Staring at expressions and poses. Seeing family’s handwriting and words; what was precious, things that mattered to them - and now they matter to me. They give shape and colour to the stories I have been told. I can embellish vague recollections, lying dormant, only now revealing their presence. All those things I may, or may not, have been told are, themselves, edited highlights, trimmed and amended to fit the story and the picture in the teller’s mind. Faded and altered by time, and like a film introduced with the words ‘Based on the characters of...’. What counts, though, is that they are remembered at all. From this distance, facts have little, if any, significance.

    In there, are those I knew, or still know; their lives have overlapped with mine.  There are those who mixed and disturbed the waters of my life and helped shape who I am. Part of me is already in the box.  My youthful face looks back at me, with more of a scowl than a grin; I am in the midst of the family and of a life, with the adventure just starting. The photo glistens with a golden glow, illuminated by the ‘70s summer sun; a bright new dawn in contrast with the black and white, and sepia-clad memories of earlier times.  It nurtures the myth that it never rained and never hurt. Snapshots of time, before I knew what time was. I look deep into the picture, its setting, the people, and their clothes, just to form a narrative. It can only be a guess. As a child, then, and distanced from events here, any trials or difficulties for the adults in the pictures will have meant nothing to me. Whatever cares they had, they were not mine; they have long dissipated, drifting away, out of sight. These stories will remain untold. Against the mirror of my experience of adulthood and parenthood, I could imagine what they might have been. Similar storylines played out, in similar ways, to millions of others, through time, and in different places. In the main, it comes down to the family, love, money, work and health.

    You could say there is nothing original in these things, but the need and relevance of them give the hook: the interest to listen, remember and investigate, again, and again, and again. Faced with this hoard, an unplanned treasure trove, with years lain on top of each other, in my arms, I don’t need to care; there is no great decree, stating that I need to do anything.  But I both want and need to do this. Without my past, there would be no present. It moulds my future.

    I look around to find a supporter, an ally to share it with, to let these lives breathe again.  To guide the stories there are to tell, or what they will inspire to be invented. There are sympathisers, onlookers, and the rest. What am I to do about it? Does anyone else care? Are they bothered enough to turn their heads and glance my way? It is in my hands to lead, to show and tell, turning the black and white into gold. The characters in the box sit on the side lines, on the fence between fame and forgotten, where the only fascination is mine, and mine alone.

    We all have a history somewhere; running parallel to mine, all through the decades, jumping backwards through history’s highlights and lowlights. Whether we want it or not, the past remains there, lurking, ready to pounce and drag us down at an allotted time. It can leave us scarred, seared into us, scribing our future with the same motif as it has on others. The converse is of a cathartic experience of cleansing and understanding, illuminating the tools needed to build a strong, new and better future.

    I look at the collection I have, and I am proud: proud of my heritage, privileged to have had this history and the choice of what I want to do with it. Glad to explore it over and over again, to sink into the memories and be able to tell a story of my own. One year, when compared to the span of time in this box is very short, indeed, but has nevertheless ripped up and reordered the passage of time and the future in its own way.

    It can happen like this, that things never seem to change. A long walk, in which the scenery and conditions change slowly, and you know that you are on your way to somewhere. Somewhere you know, a path you recognise, until you come to a signpost that you have no choice but to follow.

    2

    The break with the past occurs at an imperceptible pace. Stretched and worn by the passage of time, the memories drift and distort, but the link is still there. It is kept alive or lost at our own will. Connected to those around us by their presence, voice and being. I revel in this reality, that they are in my life, in my home and at the end of the phone, at any moment of the day or night. Sucked into believing that it will last forever, that our thoughts and dreams will continue intertwined. Any future without them is an uneasy presence, an unbelievable reality. I continue safe and well, on the good ship of the present.

    Our family, secure and familiar. The state of being in each other’s pockets; having the luxury of care that you can say things to them without fear, knowing it is them when the phone rings, and retelling the news and the latest events without considering what, if anything, lies ahead. 

    It is into this world we tread, past the statues and relics of the past, safely cosseted away in our family vault of what has been. We have the same history, just from different perspectives, reliving the same events from different angles and different points of view, feeding off each other’s views, as they intersperse with ours.

    It is this close relationship that Claire and I have with our mum, ‘Rosemary’. Honest and easy-going, wise and funny, independent and practical. The anchor of our lives from before we were born until now, giving us the equilibrium from which we had gone out and built our own.

    Widowed in the mid ‘90s. she and our dad, Neil, fought a long battle with his lung cancer. His place as a vicar in North West London gave his struggles a public audience, out in the open, a life unravelling for all to see. The flip side of the struggle took place within a secret relationship of just those two; the other side of that coin was only ever seen by them. Even Claire and I knew little of what they dealt with, together, day by day. As their son, it is harsh to think that I was excluded, but I was.  With their faith and each other, they walked that road together, until Dad was taken away to head office. I never really cried after his death; we were close, and I loved him dearly, but the pain I felt never tried to come out. It hid itself inside and burrowed deep, underground.

    We knew our mum and thought she wouldn’t cope. But she did cope. She grew and changed into someone new, who, it turned out, had been there all the time. She had been happy in one life; its end she had seen coming and still managed to start all over again, into new ways of living, doing and being. On her own again, turning 60; no matter. Moving away, starting a new challenge, ‘I’ll take it in my stride, thank you very much.’ Those years were not seen as a burden, but as a blessing. Sixty years of experience: all she’d done and all she knew. She had a full toolkit from life and was ready to use it. Upon settling, there was never that neediness, from her, to keep us close, wanting to hold onto us in a way she was unable to with her husband. Claire and I were adults and needed to have our own lives. We lived in a different place, separate from her. We knew she would always be there, advising, helping, supporting and loving, but never controlling. That was against what she had come to know. Those sixty years of learning taught her what equilibrium meant. Besides, she had her own life and adventures to have; we were part of that and would add to that in ways she had anticipated.

    Claire and I moved, separately, to Birmingham, finding our own way. Our lives were ours. Growing and developing, in ordinary and orderly ways: the bills, the jobs, the babies, children and pets; dealing and striving, in our day to day lives, toward some sort of undefined goal, to be achieved years and decades down the line. It is a common thought that can possess one’s mind: live for now versus live for the future. It’s a bit tricky now, but will be better when this happens, or when that corner is turned. Do we end up looking and dreaming for the next thing? I can enjoy life more when I get there, only to find the next worry to occupy our time, and that dream having to wait again. All this time, with Claire and I, our windows are open to mum’s gentle influence; a constant calming breeze, barely felt, yet noticeably there, in the sweetness it left in the air.

    Her life was in Oxfordshire. In her routines and quietness, the passing of time felt imperceptible. To us, it felt like she never changed; happy, picking what she did and choosing how she did it. She enjoyed her solitude, although I have no idea if she ever got lonely. It is likely that, at some moments, that would have washed over her, but not to any great extent. She had never been interested in remarrying or looking for a new love. She settled into growing and developing as the individual that she was. The thought of switching off, or assuming that her job for life was over, never came; she recognised her situation as a new chapter, to be written and lived.

    We enjoyed one another’s closeness and separation, easily connected by a few junctions on the M40; a steady hour and a quarter away from each other, which facilitated an accepted irregularity to our visits. Birmingham was one of a number of trips Mum often made, driving around in her twenty-year-old Rover 214, in British Racing Green. It took her faithfully around the country, whenever she needed. ‘Pud’, as the car was called, periodically had one or two minor ailments herself: the air vent that just blew cold air got taped up permanently; the silent radio Mum had never bothered to enter the security code for; the rear door that didn’t lock with the other three. The odd dent, and the back windows fused shut, were minor and immaterial; they were just there. To Mum, for what she needed, the car was fine; it was there to drive! It took her anywhere and everywhere. Visiting places, visiting friends, running errands; she just went. With an atlas on the passenger seat, she would head south, to the coast. That route curves with grace, in a south easterly arc, from 11 around to 2. Through Hayling and Chichester harbour, through The Witterings, to the point at Selsey, before returning north east to Pagham. Along this shore Mum would contemplate and recharge, sitting alone on a beach. Looking out, as the waves rolled, over the times, challenges and joys of her life and of ours, just there on her own, sitting and happy. The sun, slowly fading behind the horizon, bouncing off the water and onto the skin, soaking and warming the body, that memory inducing light to end a day. It would be a day transformed from ordinary to glorious and golden, to be put on a pedestal, to be emulated and repeated. This ritual and habit would go on and be hoped for next year, and for years to come; longer holidays and short breaks to think about and plan for. Amid the journeys and footsteps taken in this life, ones like these would leave a deeper imprint than the rest. Turning away from the waves, she would walk back towards her life. 

    Our mum walked alongside us, pushing and helping us from afar, each step of the way, in her daily prayers. Her thoughts and advice would come to us from the end of a phone line, ready to speak into our lives. Aware not to skirt over or around issues, but to comment, open up, understand and want to help in the ways she felt were right. A two-way avenue where she, too, saw in us knowledge she didn’t have; angles and perspective she would otherwise have missed. Not to dismiss or belittle, out of insecurity, or a blindness that her views were right; she gave her advice. We took our decisions and then she would support on the route we had chosen.

    If, by some course of events, I had wanted to become an acrobat, or deep-sea marine researcher, I would have got thought-out questions about it, but mine was the decision to be made - followed by genuine love and support from both parents.

    Inevitably errors would be made, strewn across the lives of us all. There to be thought on, chewed over, regretted and learnt from. Time to reflect can morph into something out of control, impossible to tame, due to the events being in the past. We may be carrying a weight to be borne forever. Pushing us, leading us in ways that feel impossible to stop. Yet, still, Mum’s voice is there, for me, with words of support and charity. ‘I’m proud’ ‘You’re doing the right thing’ ‘I’m really impressed’ ‘You’re unique’. On and on the words come, delivering power, in so many ways. Taking pride in not giving in and being pleased with what has been accomplished. There is accomplishment in the ordinariness of it; building, working and enjoying it all.

    3

    The doctor’s surgery lies in Faringdon, 10 miles west of Southmoor; it is the route of convention on the A420. Away from the dead-end stump of the old road and onto the bypass, into an English rural picture of fields, on either side of a busy trunk road, linking Oxford and Swindon. A flat and fast racetrack, loved by bikers and speeding drivers. The dual carriageway has offered a short window to accelerate, so overjoyed with speed as it engulfs the senses. An unquenchable desire to get somewhere, wherever, as quickly as they can. This two-lane avenue makes some want to keep their foot pressed onto the floor, to continue to fly down the road, with trees and farms flashing by, on both sides. But the rush ends with an abrupt convergence and a ‘50’ speed limit; the one, last, desperate lunge to get past the final dawdler is invariably halted by another, slow driver. The burning desire, toward Swindon and the west, festers into a twitching edginess for some, and a smooth gentle stroll for others.  Into an old English woodland, torn through by the unending hum of modernity. A house reminiscent of an ancient fairy tale; an American-style diner losing its battle with liquidity. There are turns here and there, gates to places off from the road, away from eyes and noise; a golf club set back, behind honey-coloured walls, a school of some description; evidence of life going on in another sphere.  Then, the stricken corpse of an animal, flattened on the tarmac.  From deep within the hedgerow it crept, only to lose its battle with something it didn’t understand. ‘Oh, was that a badger? A fox? Something else? The procession, meanwhile, heads ever onward.

    As Faringdon approaches, in a copse that rests on top of a small rise to the right, a crown pushes above the canopy, out into the open sky. Faringdon’s ‘Folly Tower’ looks out toward sweeping panoramas, across its rooftops and out toward the Ridgeway.

    The road dips down, toward the main entrance to the town. Our doctor had always been in Faringdon and Mum is well known to the team there. They knew Mum for her infrequent visits and healthy history. She looked after herself, ate well and healthily, and was ‘in good nick’ for her seventy-six years. She’d been in and out for a few minor things - the odd test or check-up - but not with any chronic, or debilitating conditions.

    Back and forth, with a little more frequency, with a bit of indigestion that didn’t seem to sort itself out as most things did. Try this, try that; but things seemed to linger. After deliberations from different angles had brought the same response of ‘no response’, the nice doctor with the caring manner decided:

    ‘Ok. Well we’ll send you up to the John Radcliffe Hospital for a scan, see what’s going on and see if we can get it sorted’.

    I, as her son, heard about these visits from a distance, told by Mum, in a casual manner that: ‘They’ll find nothing, and it will just be one of those annoyances of getting old; things turn sluggish and it’s something I’ll just

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