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Island Blog – Peppers Ghost

Last family gone now on a very long drive south complete with two girls, one sausage dog, one cat, one hamster, two bicycles, a ton of kit in back. Ten days of bonkers, of opportunity grabs, of endless and fun-filled action packed crazy. In other words, normal for my family. I have watched them fly huge kites, slice the sea-loch into tiny particles, wheeling and squealing and all the way up to sunfall, catch fish on the flow tide, barbecue, dig a fire pit, build dens, bond with a friendly deer, watch stars, straggle over rocks at low tide to gather big mussels for supper, and so much more. I have those memories. It wonders me that I have them at all, that they all still come. This island roots them all, even though they spin away into very different worlds. This is home and, as always, I am the one to wave them off. I’ve been doing this wave-off thing for decades, for ever, because I was always the one to stay home. It was as it was. And still is, certainly now in the autumn of my own life.

The silence is deafening at first. Any car passing by isn’t a goodness me here they come. I don’t hear the quad, heavy laden with way too many kids, careening down the Tapselteerie track. The sea-loch is calm and in one piece. The evening is gentle, soft, empty, and yet full of echoes, laughter, children, questions, invitations, halloes and goodbyes. My home is at rest. And, although my head quick-turns at an approaching car or at a tumble of high voices sneaking through an open window, or at a sudden flash of someone small. running, laughing, shouting something, I know t’is peppers ghost, an illusion, a memory, a wonderful memory, just one of a million and they’re all mine.

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Island Blog – Clockwise and Widdershins

I’m aware that July is easing out of view, note, calendar. To be honest, I feel she only just arrived. How the wheel turns! I thought this as I watched my washing machine do it’s thingy. It swished clockwise, paused, and then went widdershins. Ah! I said, I did and out loud, this is life. You think it’s going one way and then it flaming well doesn’t. I can’t blame July. All the months do this. And what surprises me, now I consider the whole wheel turn backforth confusative is why are we surprised at all? I find no answerers. These questions are mostly thrown into the void, where, which is rather alarming, there is nobody with an answer. It wonders me. Are these questions more a boomerang?

Ah, yes, they are. Although it feds me up a whole lot, I know it’s true. We answer our own questions. We think we can’t, that we need someone else to do this, and, sometimes, when deeply compromised, deeply lost, we do. I know that. I do. But what I know and notice is that so many of us, strong us, confident us, forget ourselves. Life will swipe clockwise and widdershins. Always did, always will. I ask myself, who do I want to be in this new month, new age, new moment?

And then, I remember. It takes a big re-jig, or it does for me. Times I know I am old, feeling it, pushing on when thumbs and hips hurt, because……and what is my because? No idea.

I know me, the who of me. Not one single other person in the whole of everything will ever know the me of me, the I of I. Nobody, not ever. Only me. So this flipshake of clockwise and widdershins, this whole July departure, and the next month and the next, the expectations of those cemented in some man-made control programme, not one of them can decide me.

I turn off the washing machine, hang my clothes on the pulley. Nobody has them anymore, not in the new world of everything aesthetic and clueless. I watch them dangle. They’ll be dry the morra.

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Island Blog – The Past Perfect

Blustery, and the garden is dishevelled. Blown this way and that, snatched at and barely returned, the long legged blooms bend and sway, but do not break. Well, some do, and that’s my fault. I planted them late, the Spring flowers, asking them to do what they find tough. To be asked to bloom strongly in the wrong season is definitely an ask. I can relate. But just look at them, yellow, blue, red, beautiful, the whole fricken lot of them. They cut my sky, leaping up into the cloud talk, which, they well may hear. They offer a safety to the wee birds on the feeders, protection from a sparrowhawk. She is ferocious, fast as light and accurate. I don’t begrudge her need for lunch, but I don’t want to hand out a plateful of robins, finches, sparrows or blackbirds. It is a tricky kill for her, what with all my late planted, big ass stemmed blooms. A canopy. I wish I had had one of those in my time.

Today I called The Hub. I love The Hub. T’is a new thing. Heretofore, I called an answerphone with a lengthy tiddleypom of a preamble, finalising in press 1 for this, 2 for that, and so on until my arm grew weary. Not now. It seems, after I questioned this change, that it was deemed more reassuring for those of us with cancer, to have faster access to a human voice. So spot on with that. Instead of having to stand up once the automatic voice clicks into life, I feel heard and cared for, and so will all the others with cancer surgery and treatment ahead of them like a stop. I can speak to Adam, or Karen, after no waiting at all, ask my questions and have promise of connection and response. thank You Edinburgh Cancer Hub.

I asked my questions, was confounded at a few. Now I am here, in this wonderful Autumn wildness, with candles lit and a baked potato baking. The crazy west coast light is outside of me, and yet it is not. I watch it through my windows, can connect with it as I walk out onto the colding grass, and I feel alive. This is my home. My roots are here, even though I didn’t know. And those roots are strong. Planted late, growing, regardless of that, holding sway against the winds of time. Yes.

Ps. Can you still say ‘had had’? Is that the past perfect? I was such a grammar girl, once.

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Island Blog – An Overwhelm in Perspective

When an overwhelm crashes in like a tsunami, I notice a shutdown in me. I didn’t expect it, to be honest. I believed I would ride the wave of it with my upbeat and positive attitude to life in general, but I had not considered that a threat to my own little life would feel so, well, overwhelming. The walls closed in, that’s what happened, gradually, once the reality of a cancer threat grew horns and fangs and claws. I still thought I was stronger than any monster, but that is not the truth. I battle with thoughts I don’t want to develop. I win, minute by minute, and it is exhausting. Knocked down, get up again, knock down again, get up. I need all my compromised reserves of energy to simply answer questions or to decide on the simplest of choices. This doesn’t feel like me at all, but I am not me, not the me I was just weeks ago. Did I fall off a cliff, or into a new world full of aliens and dangers unknown? Too quick, too quick for me to gather up my sense of humour, my ability to find my way out of any maze, my self belief, confidence, identity. They look down on me, or over at me, across the divide of space, of water, of air. I call to them, but they are also afraid, unsure of our connection. I am still me, I whisper, but their heads shake, No, you are not. We don’t recognise you down there, over there, a tapselteerie of bones and muddled thoughts.

In and among my children, my family, I feel strangely disconnected. I feel watched. Of course I am watched. I would be watching any one of them in my position. What to say, how to encourage, how to keep momentum going, how to bring forth distractions, how to kill time in the Wait Zone. It is tough for them, too. Am I hungry? I don’t know. Do you fancy going sailing, out for coffee, into the woods for a walk, or, perhaps to a game of Ludo? I don’t know. Is it Monday, Tuesday, Ash Wednesday or Christmas Eve? I don’t know. All I know is that I have to keep my phone charged, on LOUD, and with me at all times in case of a call from the consultant or the breast cancer nurse. I fight, really fight, against the constant rise of disaster thoughts, day by day, hour by hour. I write something down, then score it out. Foolish thoughts, pointless thoughts. What do you see in your future? someone asks me. I almost hoot with laughter, or I would if I could locate my funny bone. I don’t know. Imagine! they urge, meaning well. I poke about in what I know to be a very vivid imagination. It’s hiding, hibernating, on hold, something like that. The effort involved in such a thought process is way too much. I just want to float.

On a cloud. I dreamed, not so long ago, that I was walking in a wilderness, through unknown territory. I often find myself there in dreams. Tumbleweeds tumble by me, dust and sand fly around my ears and face, rocks thrust up wherever I look, but I am not afraid. Somehow I know I must keep walking, keep aware, not for dangers but for opportunities. I walk and walk until, ahead of me, I notice an area of smokey white fluff on the ground. Nearer I come, and nearer, until I recognise a landed cloud. Bizarre, yes, but not in this land. I walk around it, touch its chill, my fingers floating right through until they disappear completely. Barefoot (always) I nudge it with my toes. It lifts ever so slightly at the edge. More solid than my fingers think. Gingerly, I step onto it, moving into the middle. It holds me, easily. Then, a few moments later, and once we have got to accept each other, the cloud begins to lift. Slowly, gently, steadily, no rocking nor threat to unbalance me. Higher and higher we float, until the tumbleweeds look like dust balls, the rocks like pin pricks in a wide open desert. There is no sand in my face, no land to trip me up, no big rocks to halt my traverse. In short, there is a new perspective.

Then I awaken and think. There is what I can see. There is much more I cannot see. And then, there is that place in between where I get to choose how I see what I see, and what I see are my self belief, my confidence and my identity on that cliff edge, right in my flight path. It is easy to grab them as we float by, and I do. Then we all go down to breakfast.

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Island Blog – Fanacadoo

Do you ever arrive of a morning having travelled into weird worlds all night long? Or so it seems. All impossible things, unlikely people, extraordinary happenings happen inside the hours of sleep, none of which would survive five minutes in earthly mode. Beyond the borders of ‘possible’ lie these worlds, a convolution of stories read, tales told across a table, films seen, random encounters, daydreams, worries, fears, doubts and delusions of grandeur. I can fly. Sure you can. I can save the world, blow it up, murder (in a good way) stand watching a happening without moving into action, put out a forest fire all alone, win a house in Malibou, all possible in the depths of night, when my mind, which was programmed to sleep, chooses her own adventure series and plays it out all the way through.

Of course, I barely remember a sequence of plausible, believable events, oh no, but just patchy catches of the whole fanacadoo. As I lift from bed and move into the day, the images scatter, fractal, smokey, spiralling into the bedroom only to skinny through the gaps, as if they never were at all. Could this nocturnal experience be a helpful clearing of a cluttered mind, I ask myself? Or, was that unpleasant image, still inside my head despite my attempts to turn it scattered, fractal, smokey and spiralling off to skinny through the gaps, some sort of prophesy or warning? Over the years, I have learned to decide for myself the answer to those two questions. I say that I am not at the mercy of either of them, horns as they are of a dilemma, a waste of daylight to finger through such confusion with no chance of an Aha moment. I decide that my subconscious mind is a superior being and not in my control as I might like. If it can produce unbelievable scenarios in such brilliant technicolour, structured on nothing I have encountered, nor ever will, then it is at work on my behalf. Although I know that, at times, my own piddling worries and concerns can leak into my dreams, the costumes and scenarios fantastical, I trust there is a point to it all and not one my tug-boot daylight person is ever supposed to understand.

How freeing it is to address the night larks thus! I can dress and prepare for my day, knowing that a deal of fanacadoo has been addressed and processed. None of it is my business. It’s as if an inner counsellor has beavered away as I fitfully slept, lost in the story of the night. She has tidied up my mental loft. It is done. My remit is only to allow, accept and move on into the ordinary. But, with different eyes. This is important. If I can fly, save the world, turn into a mermaid, murder (in a good way) or even stand rooted and impotent in the face of something horrible, then I am delighted all this gets sorted in the safety of my bedroom. What I will never do again, having done it for many years, is to believe I am a bad person at heart, that, by dreaming this way I am showing my true colours. I refuse to accept this. I know who I am and how I will be around all other people, so that, even if it might be fun to turn into a mermaid, or to save the world single-handed, I do not relate to the backside of those (im)possibilities. My subconscious was simply filtering out, clearing away, processing and settling the who of me, the how and the what of this small human woman. I have a very vivid imagination, that’s all, and it is the work of the night counsellor to level my balance once again so that I can rise from it all with a chuckle, forget it all by elevenses and, most of all, know for certain that all is well, I am safe, my mental attic is swept and clear. This doesn’t deny the night stories, oh no, but it does put them in perspective, and one more thing………instead of moving into the day saying I didn’t sleep well, I say, instead, and mostly to the dog, What larks Pip, what adventures I had last night! She may look at me blankly, having curled into a slumbering danish, fast sleeping till a yawn at dawn, but I know how it was and I was there, I saw them all, even as those midnight images slip away like the steam from my coffee..

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Island Blog – Not like a suitcase or a door

Today I wake in the lime green light of absolutely not dawn. It thinks me that the Morning is pregnant, nauseous and letting me know. I groan. I want the buttery light that tells me is it at least 4.45am. Then I can close my eyes quick quick like a camera shutter and count the minutes all the way up to 5 which is the time chickens, babies, outside four-leggers and garden birds leap into life. Then I will perform what laughingly passes as my own leap, although I need to be cautious and one can hardly leap cautiously. T’is an oxymoron. But this lime-green morning light groans me. I had awoken oft in the dark because that flipping Barn Owl was having a party all alone on the telegraph pole, screeching insults or whatevers mere feet from my open window. I got up and gave it my best glare but all it did was that 360 thing with its head whilst its feet remained affixed to the pole. I won’t yell, I whispered, nor throw my Ponds cold cream jar at you but only because of your astonishing beauty and this irritating sense of privilege I am feeling that you chose my pole on which to screech like an old fishwife.

So passed the night and now I am flagging. Actually, if I’m honest, I flagged all day so that at this hour of the very long assemblance of hours I consider myself a high achiever in the world of flagging. I didn’t do nothing, though. Not at all. Doing nothing is so not my thing. In fact, I sometimes wonder if my not doing nothing makes me too busy to allow internal troubles to make some sense. It’s like I am ‘busy’ shutting out anything painful when I know only too well that ‘we’ must allow the pain a voice in order to heal. I tell myself that and myself usually snorts. She knows that understanding something we have read, and that makes perfect sense, has to travel a different route to actually click. I sweep the floor, very sloppily. I answer an email and work some more on one of my ridiculous fantasy landscape tapestries. This one is particularly ridiculous but I have thought that before now as I work without pattern or design only to find a rather lovely scene enfolding before me. My eyes are squint from sewing today and the rain is non-stop. I eat breakfast at 5.30 and lunch at 11.15. I am like a tortoise preparing for hibernation, going slower, s l o w e r s. l. o. w. e. r. From time to time I whack myself into startlement and we do something like go for a walk all coated in rain repellent plastic. Well, I was, but the doglet, newly shaved, was not and she decided after all of 14 feet that this was enough thanks and I’m off home now. It took me 15 minutes to get all this clobber on. Well, that’s okay. Another fifteen minutes to take it off and that makes 30 minutes which is half an hour which means the day will soon(ish) be over. Thank goodness.

I go back to thinking about the thinks I avoid thinking. Let them come in and overwhelm, says myself. No, I say. I cannot allow that. I don’t want to let that tsunami in, that one that has multiple shipwrecks inside it, smashed and broken, ruined and unrecognisable. I want to do this closure nonsense, putting everything, my life, my experiences, my marriage into a suitcase and to shut the lid. I want to slam and lock the door firmly on the past and turn away into a new life. I don’t want memories dribbling through the cracks, hissing like venomous snakes. Who the heck does? And yet, and yet, my long fingers keep reaching back through old times, to how it was, to who I was and they are the fretful fingers of an old woman looking for something she will never find. Answers.

I suspect it is natural to quest for such, for answers. I often ask myself why. Why I did this, why he said that, why she made that awful decision, why secrets secrets secrets were kept so hidden. There is a big unrest in the desert lands of Unanswered Questions. Oh what I wouldn’t give for a day with himself to get those answers and yet (and yet) I know he would never reveal a thing. He didn’t when he was alive for almost 50 years. He was obviously quite the thing about not answering difficult questions. So how do I get to a place of acceptance? I suspect there is no fast track answer to that one. Are we all mysteries to each other, I wonder? Perhaps we are and perhaps this is a normal human state, one of intense frustration right up to the end. Is death a marvellous escape? Do those who know they are dying feel a wonderful sense of relief that finally, finally, they are excused from the Accountability Class? It sounds rather kind when I think of it that way.

But life right now is like being stuck on a telegraph pole but without the 360 head turning ability. I have that screech voice and I silence it. I say I am great, fine, well, busy. We all do, I guess, in the hope that something will click at a deeper level, that my brain will believe it and invite my heart to take it in, to warm it, to beat it into new life. I know, I know, it is early days, but it is also a year, no it is over ten years of watching his secret self slowly leave the room whilst remaining in it, noisily. That is a long long time.

An irreverent chuckle comes to me in my turmoil. I have an image memory of people who won’t go. You make it obvious that after ten hours that your come-for-coffee invite is wearing very thin. They rise, eventually, but keep talking. You head for the door and open it. They stay where they are and keep talking. Now a freezing wind with accompanying rain is drenching both you and the floor. Still they talk, flapping hands and saying giggly things like ‘Oh we should go, you’ve been so kind, we stayed too long…’ You shut the door, well defeated. You didn’t offer lunch, having clocked that these good people are having so much fun that their going home just might feel like back to jail and you are not unkind even if you didn’t offer lunch. You finally get them out the door and close it quick quick. The short distance from the door to the gate suddenly looks like the road to Zanzibar. Inching, inching, inching, hearing, and enthusing about this cousin, this new baby, this new purchase, you get them through the gate.

Waving them off feels like heaven.

Maybe I will do that with my long staying unanswered questions.

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Island Blog – Ma, Him and the Canyons of my Mind

Ok so yesterday was yesterday. In looking back I always ask myself, What do I learn from the day before? I am quite unable to just let it go without a considered and mindful consideration. It has come to me, puzzled me in its intensity and thus has a message. I won’t miss that message. Although the terrain through which I inched my snail-like hours swung between a tricky wade through old porridge, a vast empty desert that scalded my skin and burned my toes and an endless stretch of bog with pummets of strong grass and sinkholes to trip me, I knew I had something to learn, to understand.

It has only been 12 weeks since he abandoned me to me; since he fled the nest and left me with a thousand words in my mouth and as many questions. Although I can now choose white lights over those miles of coloured ones, choose where I put this chair or that little table, choose when I walk the dog and where I walk her without having to say where I am going, I find such a freedom both heady and terrifying. All those little things we said, like Look at that! or It’s our granddaughters birthday on Monday, or Shall we play scrabble? Maybe it was Do I feed the orange tree or shall I wait till next weekend? Now there is no him to say it to, even if, latterly, I got little response. The warm being that was there and not there was still there, was here. I remember my old ma saying to me when I furioused at her for his lack of interest in me ‘At least you know he is there.’ I didn’t get it. Dad had died a long time ago. But I get it now.

Today, this day, the day after porridge, desert, bog day, I feel an acceptance. I know that I spend a lot of time in the canyons of my mind, wandering like Alice sometimes and like a refugee on the run at others. I am looking for a new land, after all. I know it will be there one day and that this ‘wandering’ is very important. I will not stay fixed like one of those old Scottish stone markers still planted and dating back to the days of Rob Roy, my forebear. One says 25 miles to Oban. In a car it is half that. Walking the ups and downs, traversing the bogs and avoiding musket fire en route meant more miles on foot. It meant something once, a reassuring marker and guide but nowadays it is obsolete and I know this is important to ‘get’. Fears nowadays are not of musket fire, nor of sudden ambush from the reevers or royal soldiers, loyal to the king, but of the inner enemies that live inside a mind. I work to challenge my mind, to stop as I wander through its canyons and to notice, to notice. Birds of prey flying high means something is dead beneath. A song bird means trees and fruit are not so far away. A scampering rat means there is a predator around, something with a higher shelf life. Geese, swans and ducks mean water. Distant laughter means humans.

This may sound a bit weird but I have know since childhood that I live in many worlds. It compromised my dreams and confounded me as a young girl. Now, in my evening life, I get it. And in that knowing comes responsibility. I need to pay attention and to learn, even when I sometimes feel fed up with all these learning requirements. I never know what any day will bring but I have chosen to notice and to pay attention. Sometimes, when I meet someone and look into their eyes (not in a weird way) I can see they also live in many worlds. I also see that this world has managed to tame them and I am sad. My ma always said, after we chatted about the fact that I was born in Westmoreland which has now become North Yorkshire at some human’s whimsy hand, that I would have been burned at the stake had I lived in an earlier time. She didn’t really get me and no more did I, but latterly when we had time together she was open to my ‘nonsense’ in the fondest of ways.

So I walk on through the canyons. They do not meet my eyes as I look out of my window. They are not in the conversations I have with friends or passers-by. They are not in legal documents nor in the discussion about what grave stone we should erect for himself who fled the nest and left me to me. But, and this still astounds me, he ‘got’ me. It infuriated the bejabers out of him often when the worldly requirements were required, but he did say I was his spiritual guide and that I was the one he came to when, on rare occasions, he could speak of his own porridge, deserts and bogs. And sometimes he would walk the canyons with me.

I’ll rest with that.

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Island Blog – Alice and Me

I have noticed this. In the morning, when I awaken, could be 4, could be 5 and sometimes a glorious sixer, I think new thoughts, like a child, and all those thoughts are interrupted by questions. What is the morning like beyond those blackout curtains? What will the weather do, what will I do? What shall I wear? Do I smell coffee #obviously not? Where’s the dog? That sort of thing. All fresh and spontaneous and floaty, newish, new, light as air. These Alice questions follow me to the bathroom as I wash and brush and take a look in the mirror. That grounds me. Oh, hallo Old Wise Fool, I whisper with fondness. I have no idea why I still whisper, but I do. Decades of early whispering gets stuck in a woman’s DNA.

I descend the stairs, avoiding the stairlift chair. Let me tell you about that. A week or so ago, my little grand girl was chair-lifting herself up and down. All the grand girls know the rules. One at a time. Ask permission first. She had gone through that process. I, on the other hand, being Wise and Foolish, had not checked that the duvet cover, draped over the bannisters, was clear of the workings. She ground to a halt, my little grand girl. Oh, Gaga, she said. I’m stuck. I should let you know that when they call me thus, they refer to Lady Gaga and not the alternative meaning. When I called the engineer of chairlifts, he was most kind and said he would pop over shortly to sort the twist of thick material now almost a part of the cog mechanism, so melded it was, and is, still.

As I descend those same stairs, I notice that early thoughts don’t all come with me as if they know they are dream thoughts and know their place. The Alice in me meets the day about half way down. The day before has its own residue, and rising. We meet for conversation. It’s like I grow up every morning, from dream child to sensible old woman. Sometimes there is a collision. Other times, a collusion. Either way, it is new each morning.

As the day grows and develops, bringing with it a list of things to fill in, such as lawyer’s letters requiring originals of every important document, plus my own ID, for goodness sake, as if nobody knew I had stuck with this man for almost 50 years, and, as if I might be a sudden nobody, I drink coffee and move on. Each day brings its accompanying thoughts and fears and doubts. Overwhelmed, often, I remember the Alice on the mid-stairs and breathe. I can meet her there anytime I choose, and I do. It thinks me, about thoughts. They tend to gather as the ordinariness of a day crowd in like a noisy rabble, set to confound and dissemble. I go half way up those stairs, just below the strangled chairlift and sit. Hallo world, I say (not whisper). I am strong, wise and paying attention. I can do this. I’ve got this. It will pass. I’m not sure the world likes that much.

When I go to bed, I pass Alice mid-way and crook her in my arms. My thoughts are a circus. In my thinking I bring her, fresh young child, upstairs as a gift to my night. Even if my head is thringing with a million thoughts, she, on the stairs, half way down and half way up, is still fresh as a daisy, that beauty that rises with the sun and closes as it sets. So simple, so fresh, so free. I have dealt with lawyers, probate, funeral expenses, ID requirements and also ran. I am ancient by the time I trudge to bed. But she is not.

And she is me.

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Island Blog – Shift, Fly and a Dog’s Questions

This afternoon I walked into Tapselteerie, as I do every single afternoon, small terrier bounding afoot. She is always full of ridickerluss bounce as if we have never walked this way before; as if she and I are about to discover a gruffalo nest or a ferocean of fairies. I pointed out the conkers to her, the star moss, the positive pebbles I hid that someone has moved on, but she just looked at me like I was a weirdo. Her plan is to locate the biggest and longest stick she can find and then lift. She waits for me to forward, then runs full tilt, whacking the backs of my legs with half a hazel tree, thinking it hilarious and most satisfying. I don’t mind. She thinks I don’t know what’s coming, but my advantage is my human brain. I have worked out the math of this particular pole, considered the level of scratchy branch activity, the then width of the track, the level of recent rainfall and its ability to soak my calves. It’s a daily game and only infrequently I am required to say enough is enough. This day was one of those times. The pole would have held up an elephant’s weary head, no bother.

Up in the woods I heard childlaughter, my favourite sort. Poised on a rock and looking like a dream, a little girl squeaks with delight as her father completes the construction of a swing. I can see she will begin on the rock, but the fall away of the hill and the subsequent leap into the sky takes her 20 foot off the ground. She is tiny, wiry, slim and excited and I want to hide. I see a thousand disasters, but she sees none of them and nor does her father. He has swung many times higher in his time, almost to the moon and back, and, for all I know, touching moon base. He is, after all, my son and all of my children are risk takers and always were. I have no idea where they got that from. After successful launch, momentary panic as she looks down to see the blue planet below her tiny butt, followed by a happy landing back on the rock, the game is on, the shift from land to outer space completed.

Back home there is a shift. A sudden shift. In the journey that is dementia, this is oft how it works. Plateau, shift, level out, plateau and shift again. Everyone involved needs to catch up, learn, accept, take action. This is where we are now. Just 2 weeks ago the plateau felt like it was staying flat, for some long time, with only little skips and twirls that showed a gradual demise. But now on this road, the pilgrim has met landfall and it seems there is no way around it for him. He doesn’t want to eat, cannot move anywhere or anyway without help. We, his family, are coming to terms with that but I won’t say it is a natural nor an easy thing to come to terms with nor accept. How could it be? This is Dad. This is the strong provider of 50 years and then some, the one who knew the answers to everything and, if he didn’t, never let on. I remember a violently horrific North Sea crossing when I was so terrified I thought I would faint clean away (but didn’t), with a force 10 gale battering our boat, full sails up because it had come in so fast there was no time to reduce, nor crew (me being terrified) to strap on, walk the slippery deck in lashing rain, and then find the strength to work the winch. But, and but again, he never left the helm, navigated us home to within a few maritime feet of home harbour, using his skills and whatever stars he glimpsed. 17 hours of rocking and no soft cradle in sight, but he got us home and intact. This is the Dad who took risks, flew high and taught all of us to trust in him and to shut up and fly.

This shift is tough. I want to reach out to anyone and everyone who is going through this end game or who has gone through it. My utmost respect and admiration to you all.

Even the dog knows something’s up. She keeps looking at me, a million questions in her eyes.

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Island Blog – Tribute

I always feel better after writing a blog. Is it, I ask myself, to offload, to teach, to preach, to, in other words, misuse my public forum? It’s a goodly question to ask myself. Once I have ferreted around in the cellars of myself, once I have come up feeling strong in my purpose, sure that it is not about me but about anyone else who may click with something I write, I write. This is one of those well-ferreted writes.

Today was troubled. The way it works for a full-time carer is this:- Day begins hopeful, trusting and light. Then one becomes two as the one in care descends the stairs, floating on metal poles and thanks to Major Tom, aka the chairlift. This is when the mode and mood of the day is proffered as IT. Now I have a choice and a decision to make. If the gloom descends with him, then I must attend to said gloom. I can resist it, but we all know resistance is futile. I can poke at it, ask questions, play bright, but I can hear my voice, in a slightly higher key, sounding sharp as badly cut tin. This won’t work. I lift my ass from my seat, round to the kitchen, make coffee, hot strong and black. Not enough. This gloom is following me, I can see it, smell it, feel its touch on my back. I swing about. Go Away! I hiss, but hissing works no better than resistance. I can feel it pulling at my skin, seeping in, changing me.

The day rolls slow. At 10 am I bake a cake, thinking, this will do it. It’s my usual flat pancake but with cherries which makes flat okay. Taste is everything, after all. We wander through the morning, him restless, moving moving moving all the time, the click and whir of the wheelchair setting my teeth on fire. Ears, I say, stop listening! I have always believed, and proved, that ears are obedient souls, if you organise them right. Pulling birdsong forward and pushing clicks whirs and other unpleasant noises back works well, for a while, but I must be vigilant. One relax and the click whirs are wild in my head whilst my teeth could burn down Rome, even from here. I read the affirmations on my kitchen wall. You can do this. I’m doing great. I believe in my dreams. This too shall pass. Those sorts of affirmations. Ya di ya I tell them today, but I don’t rip them down as I have in the past because that is resigning myself to the gloom. I cook, walk, feed birds, watch the clouds, berate Lady Moon for not showing me herself at 4 am and keep going, keep going, keep going.

It’s like holding up a bridge every single day. Just me (or just you). Mostly I can do this (so can you). Mostly. But it is exhausting, endless and with no end in sight. I have to be cheerful for two every single minute of every single day (so do you). I have to think ahead, plan, make sure the way is clear, be kind, laugh, smile, show up no matter how I feel or what I want. I could go a bit further for a walk. Easy. Not. I still could, but I don’t. On Gloom days I am fearful. What if he falls, gets more muddled about this or that, what if he just feels scared and needs me to hold that heavy bridge up?

This is caring. You who do it, already know. Outside of our lives are many who support us and show great compassion. We need it, oh boy we do, but they haven’t a scooby about what it’s like for us, minute by minute, day by endless day and I hope they never do. Holding up a bridge, alone, scared, ageing, tired, exhausted, doubting, weak and sleepless is something we have fallen in to. We won’t abandon our post but the ask is great.

I salute all of you who care enough to be caring. This is my tribute to you.