Tag Archives: dementia aftermath

21 Jan 2024 · 7:25 pm

Aftermath …

Well, since we’ve talked about my lovely mum dieing, we may as well go on to talk about her funeral and the general aftermath. I wrote, possibly the longest eulogy on earth, except there was so much more I could put in and my brother wrote an equally lengthy one, my nephews and nieces said things, and my son read the lesson. The rain fell out of the sky like someone emptying a bucket over us but strangely, nobody really cared. Not even my poor uncle, who can’t walk without assistance but made it all the way up the church path because I forgot to get the wheelchair out of the church room! What a plank!

 

One of the important things about a funeral, I think, is that it should be a celebration. It’s like a send off where you laugh and tell stories about the person you loved. It’s how I was taught to do them and I find them enormously cathartic, done that way. So Mum was carried in to Lord of the Dance, because she’d always said she wanted that at her funeral but the priest pointed out that the words are a bit hard core. They are actually. So she got her wish without the hard core words. We tried to keep it short. And failed. We had a requiem mass because that’s what Mum wanted, she was always very disparaging about anyone having ‘a hymn sandwich’ as she and Dad called it. Mwahaharhgh, except she wasn’t because she wouldn’t have criticised anyone who’d decided to have one, she just didn’t want to do that for any of her rellies or have us do it for her. We found a whole bunch of lovely photos of her which I’ve uploaded to her memory wall because loads of people couldn’t come. We also got the service recorded. Originally we were going to try for a live stream but the signal round the church is even worse than it is round my parents’ house so it was loaded onto the web afterwards.

Slight hiccup when I went to the cupboard to borrow Mum’s dark blue coat only to discover that my brother had already taken all but a single puffa (which was even mankier than the one I’d brought with me) for the Ukranians. Luckily we found some kind of embroidered affair upstairs in Mum’s wardrobe. I put it back when I was done and now I’m slightly regretting it. I’ll definitely nick it next time I’m down. It absolutely threw it down with rain. My poor friend who came from Worcester took five hours to get home, and another friend who was about an hour up the road took two and a half hours to get home. Joy.

How does it feel now?

Kind of weird, if I’m honest. There’s still an absolute metric craptonne of admin, forms to fill in stuff to scan, copy and submit, and an absolute gargantuan raft of other shite. And I’m skint. As ever. And will be for some time because … probate. Obviously we’ve had to take anything worth nicking out of the house as well, and put it in storage and then we’ll have to bring it all back when we get a date for the probate valuation. Head desk. Oh well.

Apart from that though …? It’s hard to explain but, this last ten years as I’ve shared my frustrations at my complete inability to write books at a reasonable speed and my all general ineptitude with you lot, it’s been quite a struggle. A lot of the time, this blog was all I could write. The eyebombing helped of course. That was a bit of a win. But the thing about dementia is it’s sad. Even when the person is quite happy the way Mum was. I’ve been sad a lot of the time for the past eight or ten years and the five before that I was just exhausted.

We have a memory page for Mum with a link to give to the Dementia Society (Admiral Nurses) because they were incredibly kind to me when I rang their helpline which I did, in pieces, several times.

Picture of a lady in a chair reading a newspaper

I love this picture of Mum.

My godmother and I were chatting today and she said she’d looked at the page, and the pictures of Mum and found it very distressing to see the last one, at Mum’s 90th birthday celebration because she felt, looking at the picture, that a lot of Mum had already gone. It’s probably true. At the end, Mum was like a tiny flame, a pilot light compared to the brightly burning, vibrant personality she had been. It was hard to watch her like that, although, since she wasn’t in distress, it wasn’t nearly as bad as it could have been.

Mum was so energetic though. Back in 2015/6 when this all started, I would go and stay with my parents and I would help Mum around the house, being a spare; running to fetch things because I could move faster, cutting stuff up for her because her hands were too arthritic. I had a small child but I would still come home exhausted after a few days trying to keep up with my nearly 80 year old mother. I remember Mum’s annoyance when, aged 77, her doctor suggested that perhaps it was time to stop digging potatoes herself and that maybe she should ask someone else to do it. I also remember when she was embargoed from going to that part of the garden because her panic button wouldn’t reach there. I arrived one Wednesday and found her arranging flowers, including some flowers from a tree that was well into the verboten zone.

‘Have you been down to the fruit cage?’ I asked her.

‘No, no. Not at all,’ she said.

She laughed like a drain when I pointed out the blossom and told her I’d got her bang to rights.

Sorry, none of this is really how it feels is it?

In truth, I feel as if I have lived the last 15 years of my life in twilight. First with a small child although that was uplifting, even if it was exhausting, and then with my parents. One of the hardest aspects with Mum was that there was no ‘sane’ one. Whereas with Dad, I knew exactly what to do because Mum was his soul mate and his best friend. She knew him so well that she understood exactly what he would have wanted us to do, had he been mentally equipped to decide. Except that it does get more complicated than that because the person with dementia changes so instead of putting the others round them at the centre of the world, they centre on their own needs. And those needs change. Case in point Mum, who went from ‘the minute your father goes, I’ll downsize to a nice little bungalow and then we won’t have to worry about money because it’ll see me out.’ To, ‘the house MUST stay in the family at all costs.’

Go figure.

Also, I’m not quite sure what was worse, watching Dad’s suffering or watching the effect it had on Mum, so having a sane one to consult did have a downside. The good thing was that Mum had given me a perfect demonstration of how caring for someone was done, so it was straightforward enough to just do what she did for Dad, for her.

I miss her though, and I will for a while, but when I think of her, I see light in my mind’s eye. Kindly, gentle light. And peace. So that’s grand.

Rain soaked town … Long passage of doom. I dunno. Go figure.

I have her engagement ring. It means a huge amout to me because it meant so much to her, but also because she meant so much to Dad, so it’s kind of the love of both parents rolled into one. At the same time, it’s also a lovely thing, and I am delighted with it on an asthetic shiny-thing-appreciation level which actually makes me feel a bit guilty. (Now I can hear the voice of Dad in my head telling me there’s nothing wrong with thinking it’s a beautiful ring because he thought it was and so did Mum and that being able to appreciate the ring in both respects is nothing to be ashamed of. Nonetheless …) My ring size is N and a half. Mum always joked about having hands like shovels and massive knuckles. I never thought she did until I tried to wear her ring. It was U and a half! I could have worn it with gloves Lord Vernon style … on the outside. Mwahaharhgh. When I picked it up from the undertakers, I put one of those plastic things you can get on it to make it smaller. It was two weeks before I could bring myself to remove it so it could be altered. But I knew that if I didn’t get it altered soon, I’d gesticulate and it would ping off somewhere and I’d never see it again. So I went to one of the lovely jewellers in town. I got it back on Friday. I’m not sure I’ll be taking it off again for a while.

Sometimes, on sunny days, I imagine my parents’ drawing room. I see the way the sun shines through the windows casting bright slanted oblongs of light across the wooden floor. I hear the birds outside. I see the ashes of the most recent fire in the grate. It’s a lovely room. Sitting in there is like being hugged. No wonder that house has only had three owners since 1911. It’s a bit special. It feels kind. Perfect match for my parents really.

What next?

Nothing much for a while. We have the interment of both Mum and Dad’s ashes on 10th. Which reminds me, I must pop down there and rescue Dad from Mum’s desk. We’re going to drop him off at the undertaker’s for a quick holiday so they can pop him into his casket and Mum into hers. They’ll be interred at the school where Dad worked, next to several of their much loved friends.

On the writing front, there’s not much. That’s fine. I didn’t write a thing for three months after Dad died. And then it only built up very slowly. I’m not expecting anything much there, although I will welcome it when it does start up again. Which reminds me. The eyebombing book’s on its way. I’m launching it on 7th February and the campaign will be live for 15 days. Hopefully I’ll hit my target of five purchasers but if I don’t I’ll just have to chalk it up to experience. It’s good to try these things.

Other than that. It’s drifting in limbo until probate’s done. And as for my newfound freedom … that feels as if it’s not going to come true. We’ve inherited a house miles away from either of us and not enough money to keep it going, unoccupied, for more than a few months. Something’s bound to go wrong, it’ll burn down … or thinking about it WWIII will start. Yeh. That’s more likely. Just as my kickstarter goes live they’ll have some massive, hideous war and it’ll fail because we’ll have all fried (hey, guess what? I never catastrophise, not at all). But it does all feel a bit weird. Like I’ve crept under the radar of the fates. It can’t last. I’m going to get rumbled.

After some years where I’ve found it difficult not to feel that, if life is a gift, there were parts of mine that were definitely a dog turd in a paper bag, I’m standing on the brink of a new kind of existance where I might, possibly, have some time and mental energy. Part of me feels it’s one I don’t deserve, or at the least, that I’m not going to get away with it. A simple, straightforward life feels like one that isn’t possible, moreover like one that I’m not entitled to. A big part of me is waiting for something to come piling out of left field to make certain sure doesn’t happen. As if things aren’t allowed to go right for me. I suspect this is part of the process after anything that’s been a bit of a long schlepp. Or maybe it’s survivors’ guilt messing with my head.

Mwahahaargh! As you can see, I’m still the same gargantuan melmet I ever was. Melmet: someone who is such a plonker they are a melt and a helmet, ergo, a Melmet. This is one of my son’s words and I think it’s brilliant. I can also put it into my books as I’m sure Big Merv will be calling The Pan a ‘melmet’ and can even explain that it’s toolbit and melt, which means I can get away with it because even if helmet is a bit rude, toolbit isn’t. Mwahaharhgh!

So there we are. And now McOther has arrived with a glass of sherry and I must take a sip or two and then head off to collect McMini from his boyfriend’s house. So that’s me for this week.

In the meantime, if you are a friend of the family visiting and you want to visit Mum’s memory page, you can do that here:

If you are not a friend of the family, you’ll not be interested in those but you might be interested in my forthcoming release: Eyebomb, Therefore I Am which is launching on Kickstarter and then will probably be available from my website (because I might have some copies left). If you’re interested in that, you can follow the campaign and it will let you know when it launches. I now have the princely sum of 36 followers on it, although I suspect they are mostly people who have absolutely no intention of buying the book but want to make the algorithm think it is popular! Mwayaharhgh! My mates being kind basically.

Eyebomb! Thereofre I am.

Anyway, if you’re interested in having a look you can also see a preview of the campaign which I have now finally finished! Yes! Even also including the video.
You can find inks to those below:
Follow and get warned when it goes live here.
Have a sneak preview here

 

 

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7 Feb 2022 · 12:08 am

Deserted landmarks and empty milestones …

Recently, I’ve been feeling slightly muted. Tomorrow would have been my father’s birthday and a few days ago, my phone’s calendar flashed up a reminder warning me that I might want to get prepared.

It hurt.

I still miss Dad, which is illogical, because it’s not as if he died a bad death or his departure was even a bad thing. It was a mercy. He had suffered enough and there was nowhere else for him to go. Death was the next stage for him and I am certain that he was more than ready. Although it hurt to receive it, I couldn’t bring myself to remove that notification from my phone. Maybe next year eh?

Strangely, I find that these empty milestones that were once land mark days often come accompanied by a stream of coincidental, memory-triggering events. I don’t mean the phone notification it’s more stuff like the fact that today, in church, we had a couple of hymns that Dad loved. Immortal Invisible is one where the memory of how he sounded, singing it, was so strong that I could almost hear him beside me. Likewise, Dear Lord and Father of Mankind, which we have had at most family funerals on both sides of the house, weddings too — to the point where I feel guilty not having it at Dad’s.

There is a bit in Dear Lord and Father of Mankind which can be construed as rude … if you work at it very hard. Today, I found myself smiling as I remembered Dad leaning over to me after the service, in a conspiratorial manner, and telling me which bit it was and why.

This from the man who was endlessly telling me the latin or greek roots for things … which is not as erudite as it sounds because Dad was a natural rebel and liked to be a little subversive from time-to-time. That’s probably why the only instance I can remember of his efforts to educate me is constipeo (constipere, constipatatum, constipatus sum) — which means ‘I bring pressure upon’ and from which we get the modern word, constipation.

How proud he’d be!

Or not.

Dad

Then again … I do remember him gleefully sharing this information with my brother and I, and Mum’s gentle, ‘No! Darling!’ which was more for show than anything because she was trying not to laugh. Indeed, as a nipper growing up, I remember all four of us as being terrible potty humourists, you only had to shout, ‘bum!’ at my family in the right way and we’d fall about laughing.

Mum was probably the best at pretending to be normal, Dad could do it as well, but he did tend to be a bit forgetful which blew it all apart at the seams sometimes. On the up side, as I told him when he started to get dementia, since he could never find his keys anyway, he’d be quite far gone before anyone noticed. Which turned out to be the case.

In my last year at Lancing, Dad retired as housemaster. Since he and Mum had left the accommodation on site I was boarding. Dad was Head of The Common Room which basically meant he was now housemaster to the teachers. One evening, I was on my way back from supper, or possibly a rehearsal or something at the music school and I encountered Mum and Dad, in their best black tie glad rags, with the parents of one of the lads in Dad’s house.

‘Hello, what are you doing here?’ I asked.

‘We’re here for the Common Room Dinner,’ Dad explained.

I glanced over at the door of the Master’s Dining Room. It was looking a bit closed and I couldn’t hear much in the way of chat going on. Should I say anything I wondered? No.

‘It seems to be a bit late starting,’ said Mum.

‘Right,’ I said. I think I wished them well and skipped off without a thought.

The next day I asked one of the other staff if they’d enjoyed the dinner the previous night. ‘That’s not until next week,’ I was told.

Oh dear … poor Dad, I remember thinking. Poor Mum, too as she had to produce dinner back at home and she had precisely zilch with which to do so. I think she rustled up a quick risotto with tinned ham and frozen mixed veg.

Life was never boring at home indeed, it was years before I reached the point where my parents were remotely shockable. They were more open and accepting than most of my friends … perhaps I should just leave that as, ‘most people’. Mum still is.

I miss Dad a lot. I suppose that’s partly because, as time passes and my memories of the shouty bit that plagued his last few months at home have begun to fade, I’ve begun to remember who he was — which is a bonus. The only slight drawback is that when you’re stressed your brain dumps an enormous amount of intel and unfortunately, I’d say as much as half my childhood memories, and my memories of Dad, have melted away post the stress of dealing with his Alzheimer’s. So it’s kind of wiped my memory, as well as his.

That’s a point of order though, because on the whole yes, I remember who he was more. Who he really was, and that’s a Good Thing. I have a video of him talking on my phone, in his proper, non demented voice. He had Alzheimer’s at the time, advanced Alzheimer’s, but it wasn’t manifesting itself so strongly and it’s so much him, that vid, that I treasure it. I realise that I need to make a video of Mum. I might get her to record one for McMini next week, saying she’s looking forward to seeing him. That will be one for both of us to treasure then. Because that’s the first thing I find, when someone dies, you subtly start to forget their voice. Not totally, but when you hear it properly you realise how much is missing from your remembered version.

Then there’s the fact that, on top of the better memory of who Dad was, I’m finding that, as Mum follows her own dementia journey, I am keenly aware that this time round there’s no ‘sane one’. Through most of Dad’s illness, I could ask Mum for guidance if I wasn’t sure I was getting something right. She would know exactly what Dad would have done or said. It’s probable that, because of that, I know what Mum wants. But there’s no Dad to check with. Because he’s dead. And even if he wasn’t dead, he’d have been nuts.

Shortly after he died, I was out with Mum in the garden walking very slowly beside her as she crept along with her walky frame-on-wheels thing. At that time, we always made a beeline for the bottom of the garden because it was beyond the range of her panic button and she wasn’t allowed, or at least was strictly encouraged not to go there unaccompanied. She did, of course, but we all pretended she didn’t. As we walked I suddenly heard Dad’s voice in my head saying,

‘Oh darling! Just look at the state of your mother, I can’t bear it.’

Pyrimid Orchids at Mum’s

It was so vivid I turned to look but he wasn’t there. I remember thinking ‘back’ that I’d do my utmost to look after her and that while I couldn’t make her better, I would try to keep her happy.

Most of the time, I know those things are my imagination, but every now and then, one pops up from such depths that it feels as if it wasn’t me. Weird.

As well as it being the eve of what would be Dad’s 91st Birthday, had he survived, today was also the 70th anniversary of The Queen’s accession to the throne (in English, since the death of her father).

As a result, the last hymn was I Vow To Thee, My Country — a hymn I would like a lot better if the tune didn’t concentrate itself quite so comprehensively in the crackly twilight zone between my upper and lower range. Then we finished with the National Anthem which goes to a tune I rather like — apologies to Billy Connolley, who, I know, believes we’d be much better off using the theme tune to BBC Radio 4’s ‘The Archers’.

Run with me, there is a spot of relevance to this one. I remember reading somewhere, a while back, that The Queen was very upset when her uncle abdicated. To the point where she took herself off somewhere quiet and cried for a long time. Legend has it that the reasons for her grief were twofold; firstly, because her father lacked his brother’s strong constitution and she shared the view of himself and most other members of the Royal Family which was that being King would do for him. Secondly, because she had to face the godawful truth that she would have to be monarch, which is a job that nobody sane with the smallest understanding of what it entails would want.

Few people seem to see beyond the wealth but I’m sure fame, or being monarch, could be pretty grim. I can’t imagine how I’d feel having people like Robert Mugabe round to tea. Sure his name backwards sounds like Yorkshire swearing (eee by gum) but that doesn’t make any of his actions funny. Supping with murderers and meat-packing tyrants might be quite grim but since you’re part of the state machinery, it’s what you do. There’s a point where being monarch might actually be quite dehumanising, I suspect.

Years ago, growing up in the school, everyone knew who I was because they all knew who my dad was. That meant everyone felt they knew me well, even people I’d never met in my life. Every now and again someone would pop up and say hello and I’d have no clue who they were. So I’d ask after their work, and various other things until I could pin down which of the people Mum and Dad had described — but whom I’d never met — I was talking to. I was always aware that my behaviour towards other people reflected on Dad so despite being an absolute menace in many respects I was always as polite as possible to everyone, especially the people at the pointy end, the cleaners and domestic staff.

Sometimes, I felt the pressure. Especially when I hit my teenage years and boys started wolf whistling at me out of windows etc. But I could always go off site where nobody knew who I was. There’s no ‘off site’ if you’re queen. Most people want a piece of you. Anyone else hates you. Everyone thinks you like it. Everyone thinks you can say no, the way they think my brother and I could say no to looking after our parents. But actually I doubt she can say no any more than we can. Being Queen? I think it’d be a bit shit to be honest.

The point is, she’s spent 70 years of her life doing a job that she categorically did NOT want to do. OK, so she might have come to enjoy it by now, who knows. The point is, it was the antithesis of what she wanted at the start. The perfect storm of NO. You can see where this is going now, can’t you?

Yep.

There are times when I do give the Almighty a piece of my mind about putting my Dad, and by proxy the rest of us, through so much. The fact that pretty much everything about the whole care thing requires a portfolio of skills that is the absolute antithesis of any of my fucking skills. Which is, indeed, a perfect storm of all the things in life at which I am spectacularly shite. Yes. Every. Last. Fucking. One. Oh and some extra things that I didn’t even know I was shite at until this kicked off, but now I do. Bonus!

The fact that pretty much all my duties of care are about playing to my failings. OK so I can sort of cope with that, because yes, I am able to understand that many parts of my life — most of them, to be honest — are fucking brilliant. Also I am able to understand that if this is the price of growing up with parents as lovely, open, amusing and out-and-out fun as mine I’m happy to pay up. But … the mental energy required to do stuff you’re absolutely bollocks at day after day is quite substantial.

The endless requirement to enhance my sorry performance from fucking awful to godawful-but-it’ll-scrape-by … probably (that’s a technical term by the way) is not only draining but it cascades down onto the pathetic embers of my creativity like a gushing torrent of rusty bog water, further hampering my efforts to write anything or … I dunno … for my existence to have a point.

Sitting in church today, thinking about how long The Queen has been monarch I actually felt a bit of a lightweight for whinging about 5 years running my parents’ finances. I will try to shut up about it and be less of a whinging twat from now on. Seriously though.

Seventy years.

Seventy fucking years people.

God in heaven! That’s a bastard truckload of CBT. Well done Ma’am. You’re a stronger woman than I.

On the lighter side …

Another quick heads up about freebies and cheapies available from my fabulous portfolio of literature. Er hem.

The Christmas story is still up for grabs, also, the audiobook versions of Few Are Chosen and Small Beginnings are down to 99c from my own store still. To find links to buy, or to download The Christmas One, just click on one of these links:

Few Are Chosen (remember it’s My Store only at the moment. It’s back to £7.99)

Small Beginnings (The ebook of this one is free at all participating retailers and on my store. The audio version is also free on my store, but £1.99/$2.99 everywhere else).

The Christmas One This one’s an ebook, obviously. Gareth has finished performing in Worms, presumably he is now bathed and scrubbed up and ready to do … audio things. Soon. There is an audiobook scheduled for late February/Early March.

Shows the cover of The Last Word

The Last Word

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22 Dec 2019 · 11:21 am

Birth of The Prophet Greetings to one and All … and a mini whinge.

Yes, of course K’Barth has it’s own equivalent of Christmas. They celebrate the Birth of The Prophet, or The Prophet’s Birthday as the feast is also known. The Prophet was born on the darkest, dimmest night of the year – aren’t they all? In memory of His birth, K’Barthans prepare an enormous meal, with numerous courses and specific – mostly alcoholic – beverages, none of which particularly goes with the other. Does this sound familiar?

However, they don’t exchange presents, oh no, instead they present each other with pastry effigies of Arnold The Prophet, stuffed full of confectioner’s custard. Anyone who stumped up for a copy of Christmas Lites last year will have read about this in the short story I had in there. It was a truncated short though, I had to hack mercilessly at it to make the 10k word count and you know me, I believe in never throwing anything away, so I decided I would polish up the longer original version and add it to my current series and publish it at Christmas time.

Unfortunately, what with Dad dying and all that malarkey, I didn’t get it finished as quickly as I expected so it’s coming out in February, 8th February, 2020, put that date in your diary peps. If you’re interested, it will be up for preorder soon but, unfortunately, not yet as … Christmas … which is so much more complicated and a significantly greater pain in the arse than exchanging pastries, mwahahahargh! But fret not! If you do want me to tip you off when Nothing To See Here, is released/available for preorder you can sign up for a special email bulletin. If you haven’t joined my mailing list, you will receive no other emails. Yep. Unless I cock it up mightily, I will only tell you those two things. Nothing else. To sign up for that, just follow the link, below or click on the picture of the cover:

Tell me when Nothing to See Here is released.

And here’s the blurb, in case you wanted it!

It’s midwinter and preparations for the biggest religious festival in the K’Barthan year are in full swing. Yes, even though, officially, religious activity has been banned, no-one’s going to ignore Arnold, The Prophet’s Birthday, especially not Big Merv. He orders The Pan of Hamgee to deliver the traditional Birth of The Prophet gift to his accountants and lawyers.

As usual, The Pan has managed to elicit the unwanted attention of the security forces. Can he make the delivery and get back to the The Parrot and Screwdriver pub in time for an unofficial Prophet’s Birthday celebration with his friends?

Other news …

There are lots of things I wanted to say this week. I wanted to talk about racism and how stupid it is, I wanted to fact check all the U-turns the Conservatives have been accused of making so far and see if it really is that dire, I wanted to do a lot of things. But … Christmas.

OK, so this is where the upbeat stuff stops, so if you want to feel upbeat, this is probably where you should stop too. The next bit is honest, and a bit of a downer.

The thing is, I’m missing Dad quite badly, it’s not quite as grim as it was, I haven’t felt weepy for over a week now, which is grand, and splendid progress. I just feel down. The grief counselling has come through for the New Year, so I know that will help and I’m looking forward to it.

In the meantime, life. It’s like we are sliding into anarchy and extremism and I’m the only person in the world who can see. I’m so weary of it all. I can’t do it anymore. I can’t go on politely pulling people up every time they say something shitty about immigrants, asylum seekers, LGBT etc folks, disabled people, brown people or anyone different from them. I know what goes around comes around. If kindness and tolerance was trendy for a while then, clearly, we’re going to go through another phase where it’s cool to be a bigoted fucktard. Cool for twaaaats (sing it to Squeeze).

At the moment it feels as if the world is being run by the stupid jocks out of seventies movies. You know, the popular bully in the class in seventies films. The one who make our geeky hero or heroine’s life a misery until said geek saves the world using knowledge and science while the jocks who think they rock stand by with their mouths open. That’s right, the people in charge right now, the people being heard and calling the shots are the equivalent of Biff from Back to the Future.

Joy.

Once someone you love has become, ‘other’ be it disabled, mentally ill, whatever, it changes you for life. I met a couple yesterday, a man and his disabled wife. He was pushing her in a wheelchair and she was incredibly apologetic about getting in the way in a very small and pokey shop. They were both sweet, but he, especially, had the kindest, wisest face I have seen on another human in a long time. Here was someone who had clearly been the recipient of unending twattery from morons and doggedly continued to treat other people with kindness and dignity. Someone truly, truly good in a way that was impossible to hide.

Apparently people frequently have a go at this couple for taking up too much space and getting in the way. I had a bit of an oh Lordy moment, myself, trapped in a very narrow aisle between them and a pram and trying to get out of the way! Only last week, at the supermarket, the lady told me, they saw that one aisle where they had to get some stuff was really full. He parked her next to some things she wanted to look at and went to get the bits they needed from the packed aisle alone. While he was gone someone came along and wanted to get to something from the shelves by the lady. She was in the way, so instead of speaking to her, or even asking her if she could pass it to them, they just moved her. Without a word. As if she was a piece of furniture. Moved her out into the middle of the aisle and left her there.

How fucking rude is that?

This is Brexit Britain. It’s not Brexit, itself that’s the problem, it’s the fact that it’s given the handful of people who voted leave because they’re racist and bigoted the courage to think their Neanderthal, shitty viewpoint is OK. The courage to commit hate crimes against disabled people, to air views that are, frankly, pretty evil, and it’s made them feel entitled to do so. I’m not even talking people who think we need to look at immigration, here. We do need to manage immigration properly, you know, with thought, compassion and empathy. Not only for those who are wishing to move here (what on earth are they doing coming to our crappy little island) but for those among whom they will be placed. No, I mean people who are out-and-out vile and seem to rejoice in it. The kind of people who would call me a snowflake, simply because I have an imagination and, occasionally, use it to try and appreciate what it might be like for other people who are different from me.

Incidentally, lots of people call me a snowflake in jest and that’s fine. Let’s be clear, I don’t mean my right wing friends taking the piss out of me here, I mean the really scary people.

The fact we are standing at the top of the same hill, with Mum, as we were with Dad four years ago is probably not helping me to feel jolly either. I did have a brief respite, but I know what’s coming and it’s coming much faster with Mum. A few months ago, when Gareth the Voice first contacted me I played Mum the demo he sent. She read and loved the K’Barthan Series years ago, and we discussed how exciting the whole audiobooks thing was. By the time Gareth and I were speccing the voices, a month later I had one voice I wasn’t sure about and I thought I’d play it to Mum. Gareth had definitely delivered what I specced but … had I specced it right?

Mum has a very good marketing brain – she was director of a PR firm in the 1960s and that is some going in an era when it was considered perfectly OK for a client to refuse to work with a copywriter on the grounds of them being female. As a result, Mum and I have chatted about my writing in depth from time to time. I did branding, which was pretty similar to PR and she’s one of the few people in Real Life I can talk to about both my writing, and my efforts to market it.

When I mentioned the voice conundrum to Mum she said,

‘Oh yes, darling, I meant to remind you about that. I haven’t read any of your books and I haven’t a clue what they’re about, it’s awful. I’m your mother. I really ought to read them. Could you lend them to me?’

I was a bit thrown.

‘Uh … I can’t remember now, but I think you read them,’ I lied. ‘But it was a very long time ago, so you’re well within your rights to have forgotten them. I pretty much have. I needed to re-read them thoroughly to get up to speed for doing the audio,’ I told her, continuing to lie comprehensively, through my teeth. ‘Does anything come back if I remind you? D’you remember Ruth, or The Pan of Hamgee? Big Merv? Lord Vernon?’

She remembered the ones in my latest story, which is short enough for her to be able to follow it. But otherwise, that’s it. She’s completely forgotten about all of it. She’s completely forgotten so much stuff.

Already.

All of it’s gone forever.

Which is grim.

I was hoping, so hoping, that it was just the strain of looking after Dad but it isn’t.

One of the toughest bits about Dad is that even though he is out of pain, and, even though, as a Christian, I believe he’s gone on to somewhere happier, I still find it hard to look his suffering in the eye. I need to if I’m going to move on, but it hurts, it hurts a lot and I suspect it always will. And now I have to walk the same journey with Mum. A costly, painful journey. One that’s going to make my heart ache for the rest of my life.

Pain on pain, hurt on hurt.

Another three years of this. Minimum. Where, in God’s name, will I find the strength to do it all over again?

Um … yeh. Merry Christmas.

Never mind, I’m going to church now. With any luck, when I come back, I’ll feel better.

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7 Dec 2019 · 11:07 am

What on God’s green earth am I doing?

This week I have mostly been, well … to be honest, I’ve been on a bit of a downer. It’s probably just the Christmas blues getting to me, as you know, I loathe it all with a passion and this year, it’s my first one as a demi-orphan, which makes it worse.

On top of that, I think the combination of a moment of extremely bad judgement coming home to haunt me, plus a bit of reality check threw me rather. Also, there’s nothing like a general election campaign to show us humanity at its ugliest. And of course, that makes me miss my dad. Not sick Dad, but the man he was. Who I’m grieving for even more now, it seems.

Eventually, I got so low, I reached the point were I had to open my mental baggage and have a good old rummage about to see if I could work out what the fuck was going on. It culminated with a long chat with my Mum on Wednesday. She’s feeling a bit down, too. I’m going to share the results with you, because as a creative bod, I found them quite illuminating, and quite helpful. Even better, said rummaging complete, I feel several orders of magnitude better about life, the universe and everything this morning. So there we are, I’ve done the thinking so you don’t have to. Fellow creative types will get this, I think, the rest of you may not. It’s difficult to articulate it well, so apologies if I come over as a pretentious prick. Unfortunately, I am. I just hide it well.

Doing any kind of arts, while often a very public act, can also be an intensely personal one for the artist involved. On a more general note, it’s also why artists of all types need self-belief and strength of character in spade loads to keep doing their art, year in, year out. It might even be why some of them suffer from depression. That said, even the successful ones suffer from that. When it comes, validation in the form of popularity, may not necessarily make the artist feel any more fulfilled.

The lovely Dan Holloway wrote a brilliant book about writing and being happy without selling your soul called ‘Self Publish with Integrity: Define Success in your Own Terms and then Achieve It. If you haven’t read it, I can thoroughly recommend it. It is the most lovely book.

In it Dan talks about working out what you mean by success and what your goals are. Know these things, he argues, and you will not be quite so gutted if ‘success’ is more about producing art you are proud of and which speaks of your soul, than art which sells. He talks about the need to get down to the nitty gritty of why you really write so you know, and so your whole business sits on this solid foundation of goals and expectation.

For many years, my rationale has been that I write because I have to. Confidence isn’t a problem. I’m good at something, really not bad, and I want to do that thing. I am a bona fide Authorholic. If I don’t get my fix of writing or writing-related action each day I get pretty crabby, like an addict on the brink of cold turkey. But it’s only recently I realised that, ‘I write because I have to’ isn’t really the answer, because what I need to know is why do I have to write?

Amazingly, it appears that the main reasons are because I have THINGS to say. Sure, I only ever set out to tell a good story and make it funny. I never set out to put the THINGS in, but whatever I write, they are always in there; love, kindness, people being decent to one another, burying their differences to work together, the cost of unkindness, greed, selfishness and the pursuit of money and wealth at the expense of all else. About the danger of treating people as things. I have something to say about the difference between physical and moral courage. About how doing the right thing is really hard the first time but how, no matter how difficult the actual mechanics of acting with integrity are, the more you do, the easier it becomes. I have stuff to say about tolerance, and the nature of true strength of character – which is rather more complicated than just being bolshy or shouting down the opposition with a loud voice. I have things to say about imagination, and how important imagination is to maintain a civilised society where people treat each other the way they’d like to be treated. And of course, I want to make people laugh, because nobody’s going to hoist in that sort of bleeding-heart, love-thy-neighbour, Christian clap-trap unless it’s funny. And anyway, I can’t do serious.

Those things are all quite personal to me. They go deeper than I realised. I think watching my dad ravaged by Alzheimer’s, dealing with the way others behaved towards him, has completely changed me. Perhaps I underestimated the importance of imagination, and using it to put yourself in the place of others. Dad’s suffering also changed the way I view people or social groups with whom I share little common ground. Maybe I can see a bit more clearly where ‘them and us’ tribalism takes us now that I’ve spent a lot of time with one of them. Some people were utterly lovely with Dad and some were utter cunts. Always, their ability to use their imagination, to empathise, was the only difference between the two.

Obviously, all of us creative nutters care about what we do, we wouldn’t do it otherwise. I’d guess, we all have those days when we look at our work and think it’s crap., and other days when we feel we’re on top of the world – and so is our stuff. Then there’s that horrible bit when you send it out into the world for the first time. That moment when you think, ‘Lordy, what have I done? Is it shit?’ That’s a natural part of the creative process. I’d bet my life anyone who does anything creative, ever, will have felt that. But I suppose what I was trying to get to the bottom of with all this introspection, really, is, when I make something I’m happy with, when I think it’s about the best I can do, why am I sad when the world disagrees? Why do I give a toss what the world thinks? And if I do give a toss, what on earth is it that’s driving me to keep spending money I don’t have putting out books only a tiny handful of people want.

And what this has shown me, I think, is that I care a lot more about my writing than I thought. It means that what I do is not just an addiction, but a vocation. I need to write this stuff. All of it; this blog, the books, the non fiction stuff I’m working on. I need to connect with people. I need to try and spread the light and I need to do it especially badly now Dad has gone, because before his illness, he did all that, effortlessly. And maybe, what this also means is that, when I write a book and it doesn’t sell, it’s the complete indifference of the world to my efforts that hurts. Because I need to make these people understand. Then again, there’s always a flip side; if no-one gives a shit, it’s unbelievably liberating because you can write anything you like, right?

With that better understanding of the unconscious emotional investment I make in each of my endeavours, I think I finally get why that rejection is painful. Why it’s hard to shrug off the heartache when, on another level I’m genuinely not bothered. And maybe understanding this simple fact is, sort of, the essence of producing art. Whatever it is; be it drawings, writing, music, dance, acting … you name it. Because that’s what people do isn’t it? They get good at something. And sometimes, they get noticed. But for every one who does, there are thousands of completely invisible people churning out art because something drives them on, or because they believe in what they’re doing and enjoy doing it, and that’s all they need. A lot of it is fabulous stuff. A lot of these people are amazingly talented yet they receive little or no recognition. But it doesn’t stop them. They don’t care if no-one else gets it. After all, they do. So they keep putting themselves out there, for nothing, because they want to, or have to. Weird isn’t it?

Strangely, a big reason I want to earn cash for my creations is my wish to create faster, and to diversify; large print, hardbacks, it’s all missing because it costs money. Money I don’t have. I save up, when I’ve enough cash, I spend it releasing a book. It takes ages because there’s no time in my life for a real job. It would be amazing if I could earn enough from each release to pay for the next one. It’s a modest ambition and my consistent failure to achieve that is galling.

Now, I have to point out that everything I’ve said about creating stuff is pretty much moot on the eyebombing front. Eyebombing actually is something I do, solely, to make people laugh. It’s light and fluffy. I get to pretend that I’m edgy and street by calling myself a street artist. In truth, I’m just a fifty something mum who likes to prick the bubble of the pompous and has failed, spectacularly, to grow up. It’s taking the gentle piss out of the world and myself. I don’t take it seriously. I’m not putting my soul out there or anything.

However, on the back of the positive reaction to the pictures I post, and to the handful of calendars I had printed for family and friends last year, I genuinely believed the calendar would sell. That it would bankroll my next release, or some of it, and raise some money for charity as well. If the calendar sold well, it meant an eyebombing book would sell. It meant that my publishing efforts might become self-financing.

In the event, I have made half the cost back, and managed to raise a few pence for the things I’m supporting. I can chalk this one up to experience, but my pride is definitely dented. And, of course, I’ve made a piss poor judgement call, not to mention a complete fucking idiot of myself, which is always a bit of a bummer.

It was a bit of a blow to discover the truth a time of year when I’m a little more maudlin than usual anyway. Add in the whole demi-orphan aspect and it certainly explains why I was so utterly down for the first part of this week.

It’s an ill wind that blows nobody any good, though. By making an absolute tit of myself and pissing my ill-gotten winnings up the wall I have, at least, learned that a book on eyebombing will not sell. I’ve also learned it for a LOT less than the cost of a book on eyebombing. Sure a book would have a longer shelf life than a calendar, and longer to earn out but I fear the shelf life in this instance would be about the same as that of nuclear waste.

If I had enough eyebombing books printed to sell to shops with a decent discount for them and profit for me, apart from bankrupting myself, I should think my descendants would probably be trying to flog the last few in a couple of thousand years’ time. So yeh, calendars-wise, I made an expensive mistake, but it was made with cash I wouldn’t otherwise have had and it could have been so, so much worse. So while I am gutted that my judgement is absolutely fucking miles out, it’s probably just a case of how you look at these things. It was an experiment after all, and it didn’t work out. Dust the sand from your feet and move onwards and upwards.

With the books … well … it’s weird. When I released Small Beginnings it was four years, to the day, since I’d released the previous book. K’Barth is a slow seller (except to a select few loyal fans) so I’d been trying to write other things, but the Real World was doing my head in and it just wasn’t possible. In the end, writing something was better than writing nothing. If that meant more stuff about K’Barth until Real Life calmed down a bit so be it. Anyway, a series of shorter, cheaper books for the haverers to try for less cash made sense, you know, to ease them in. I expected very little from Small Beginnings. I was hoping against hope that I might shift a few more of them over the release period than I had of the previous release but that’s about all.

So did I? Er, no.

Do I care though?

Yes, a bit, but not nearly as much as I did about the calendars. It’s not been a success. But it’s K’Barthan so I haven’t expected it to be. Yes, I feel a bit disheartened in some ways, but people bought it, lovely people who read it, liked it and some even reviewed it. It didn’t completely die on its arse, unlike the calendars.

Furthermore, though I’d planned the launch, it wasn’t the smooth affair I envisaged. For starters, it was suddenly in the middle of an election campaign which is never helpful when you use social media in your marketing. Since the election was announced, most of the on-line groups I frequent have been post-apocalyptically quiet. The cost of advertising has also risen sharply – out of my range – so nothing doing there. Finally, several other authors I know released books at the same time and I missed an opportunity to organise something with them. Teaming up and pooling resources on this kind of stuff always works well.

On the up side, I’ve discovered I can sell books reasonably successfully face-to-face. Conventions and events are clearly the way to go. As my lad gets older it’ll be easier to follow that path. I’ve met a lovely bunch of local authors now as well so who knows, maybe we can work together on that – the cost of a table split between four is much easier to absorb than one on your own.

There’s also been a bit of a change, this last few months, in the way I do my social media interaction, email marketing and Facebook advertising. There’s a K’Barthan Jolly Japery facebook group now, which is a gas. It might be this up-close, personal contact with my lovely readers that fooled me into thinking I was turning the corner. Because though it’s a small group they are hugely supportive. Perhaps I won’t really know if anything’s happening until the group gets bigger. I mean, my books are only ever going to be cult, but if these lovely nutters found me, I can kid myself that others will. Who knows. I’m just glad they’re there.

Perhaps, that’s the secret of happy creativity then; keeping your expectations realistic. Believing in what you do, yet being pragmatic enough to prepare for the worst – even if you are idealistic enough to hope. I’m think I’m, sort of, almost at peace with myself on this. Almost … it’s just that … sometimes … earning the production costs back would be good.

There is a choice, I think. I can try and be an outlier, do something different, or I can write to market. Writing to market will earn me cash, being an outlier won’t. Not unless I’m up there with Terry Pratchett, Douglas Adams or JK Rowling. But the thought of trying to find a way to make shape shifters and vampires interesting. Or writing a new slant on manly men fighting other manly men in space – or thin women in leather jumpsuits who are basically, manly men fighting other manly men in space, but with boobs and a high voice … I know it’s what the market wants, and what I should be doing, but the thought of following standard tropes makes something inside me want to curl up and die. I can’t even bring myself to take the piss out of them. I tried with Deirdre Arbuthnot, but I got too interested in her back story and it all went to pot.

I always knew that, if I wrote the books I like, it’d be a niche. I mean, I can’t remember what the actual letters in my Myers Brigg profile are, but it’s 8% of the population. That’s a small niche. Sure 8% of the world’s readers has to be a big enough chunk, but in marketing terms, it’s still like looking for a needle in a haystack. It is going to take ages to find them.

What all that means, is, I have to get real or get over myself. I must decide if the joy of creating these lunatic worlds is more important than earning a living at it. And when I look at it, deep down, I know I have. Well … for starters, it makes my tax returns a lot less complicated to do.

As for the calendars. Well, I’ll just chalk them up to experience and keep on publishing books. Books I like, for the handful of fellow nutters who enjoy them. It really shouldn’t bother me if hardly anyone else gets them. After all, I do and the nutters do. Our own secret in-joke.

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30 Nov 2019 · 2:46 pm

Let’s talk about things …

Wow, I have a whole gamut of stuff washing around to talk about this week. I’m not sure if I’ll get through it all or do it justice but off we go.

First of all, last week, you’ll have noticed there was a break in transmission. Yep. No blog post. I meant to do one but then it was time for the Christmas Fayre I was getting all my shizz ready and … er hem … I forgot.

In my defence, my father’s memorial service took it out of me. It was wonderful but blimey I was knackered afterwards. Lots of emotional stamina required. Which reminds me, I should write and thank a lot of people. Yet more stuff to add to the gargantuan, War And Peace-length list of Shit MTM Hasn’t Done. Gulp.

The fayre was kind of a mix. It was the first time in a new venue and it took a while for people to realise we were there. Friday was quiet, Saturday reasonably busy, and Sunday a lot busier. The books sold well, although differently, a lot of people bought two; a copy of Escape From B-Movie Hell and a copy of Small Beginnings. The EyebombThereforeIAm calendars, which I thought would sell like hot cakes and bankroll everything, they didn’t sell at all. So that was bizarre.

The ill fated eyebombing calendar

The consensus among friends and family is still, ‘oooh I’d buy one of those,’ and some even have, but they clearly left the general public cold. I am selling some for charity, which might help. I had to sell 30 at £9.99 to pay for costs, I sold five at £9 and I have sold three to a lovely friend for £9.99. I picked £9.99 after researching them in local shops and discovering they were mostly £9.99 – £15.99 so I went for the lowest price. However, McOther tells me a pop up calendar shop has opened in the new shopping centre with prices from about £7.00 to £9.99 so perhaps I’m now at the high end.

Never mind, onwards and upwards. If you think you’d like one you can find out more here.

Dad’s memorial went well. It’s always interesting going back to Lancing because for the first sixteen years of my life it was my home. I also had another home, kind of a two sheds Johnson, that was me, because we lived off site in the holidays. But Lancing means as much to me, in a different way, as the other place I grew up, which Mum still lives in now. Going back is like having a little squiffy in your old house, seeing how the new owners have changed the decor! Although I haven’t been in our actual old house.

It was a glorious celebration. Really lovely. I cried my eyes out at the end in a way I hadn’t at the funeral, which was a bit embarrassing but also kind of cathartic and easy enough to hide because I was wearing a big hat. Just look down and hey presto! Nothing to see here. I suppose I felt it more because this was the last goodbye and the last thing we can do for Dad … well … except inter his ashes but we are going to … er hem … batch him and Mum. The eulogies were great, really funny, the way Dad would have wanted. Lots of stories about his antics. Some good shouty hymns. Really well chosen readings and the readers and speakers did a grand job. I even managed not to cock mine up! Woot! Although I was last up so I was shitting gargantuan bricks for most of the service. Listening to audiobook proofs all week helped in that respect as I just followed the little voice in my head that said ‘read it the same way’ and did. Minus the funny voices, of course.

Highlight of the readings they chose an excerpt from 1 John Chapter 20, which included verse 4:

If anyone says, “I love God,” and hates his brother, he is a liar; for he who does not love his brother whom he has seen cannot love God whom he has not seen.

A perfect summation of Dad’s attitude, since he was the embodiment of love thy neighbour in a way that many of the loudest Christians on the internet – especially the mentalist, old-testament-thumping, gun-loving ones in the US – are not. Yes, if you think anyone is Satan’s own spawn because they think differently from you and say you love Jesus, you’re a liar! Love that.

Desmond Tutu stood here and so did I.

Huge amusement afterwards when we discovered a plaque bearing the legend, ‘Desmond Tutu stood here to dedicate this window to his friend Trevor Huddleston.’ Much incredibly mature ‘standing here’ where Desmond Tutu had stood ensued, from me, Bruv and Eldest Nephew, Good-King-Wenceslas-‘heat-was-in-the-very-sod’ stylee. Mwahahahrgh! Phnark.

With the election on, I think I am feeling Dad’s absence a lot more, mainly because of the race the bottom that is the election campaign. I’m one of these weird, old fashioned people who thinks that lies, soundbites and dirty tricks, just make a party look like a bunch of twats. I think fake news is a danger, not something to be embraced. I’m one of these old fashioned people who thinks dishonourable and shoddy behaviour, unkindness, opponent smearing, hypocrisy and bare faced lies, you know three year old caught with a hand in the biscuit tin and denying it, Scottish Spaceport is nearly built, let’s change our twitter name so we look like an impartial not for profit organisation disseminating facts rather than one of the contenders, kind of lies, and a general complete lack of integrity, are actually bad things. I still believe elections should be fought on issues although I’m not 100% sure if the labour site I’ve found is their real site or a conservative spoof. Sigh.

When it came to the day to day discipline of running his house, Dad had zero tolerance for three things, drinking hard spirits (he’d Not Catch boys drinking beer, wine or cider, so long as it wasn’t too out of hand but he would catch the spirit drinkers) drugs and bullying. Even so, nearly every boy my Dad expelled was expelled for bullying. One, who was expelled for doing something particularly stupid but which wasn’t bullying, was finally reinstated after three days, at my Dad’s behest. He didn’t stand by and let something go if he believed it to be an in justice.

Maybe that’s the trouble with this election; the glaring lack of statesmanlike behaviour in pretty much every one of the high profile politicians. The trouble is, there are decent people beavering away on the back benches for all parties. They just never seem to make it to the front.

To me and many others, the NHS is a good thing, and the death of a thousand tiny cuts to which the current and previous governments (of all colours) have subjected it is a bad thing. Successive governments have been breaking it so they can say, ‘look this doesn’t work’ and contract it out.

Take dementia care. My father paid tax all his life but until he was down to his last £14k he was not eligible for free health care, and even when he was, because he had a work pension, he actually paid for it, they just charged a lower rate. If he’d had a frontal lobe tumour it would have presented the same symptoms, but he would have been half a million quid richer when he died. Half a million quid of life savings which he’d earned and already paid tax on. You know tax don’t you, the stuff you pay so you get things like free healthcare from the NHS? At the point where he was weakest, most vulnerable and most in need of help, Dad was betrayed.

The thing is, hanging out with my Dad, as he became more and more mentally disabled, has turned something round in me. My Dad said and did some pretty grim things during various phases of his disease. Partly because there were no filters, partly because his world was warped and distorted by his disability, and I guess partly because his disability also warped his efforts at self expression. Sometimes he was horrible and that hurt because he was always my dad. And I knew that somewhere inside that inappropriate, screaming exterior was the gentle, kindly soul I knew. He just couldn’t reach us. A lot of the time, all he needed was the right word, the right help, to bring him back. We couldn’t always find it but we tried and I think he was aware of that.

But now when the conservatives talk about scroungers and tell disabled people to get jobs, when they foster the zero tolerance, claw-it-all-back attitude to social care and disability benefits I begin to wonder if I’ve jumped timelines or something, I’m so out of kilter with the way other people think. When they shame and vilify disabled or chronically ill people as scroungers, I feel sick. When Social Services ask my friend’s daughter, with achondroplasia, when she expects to get better I am unimpressed. This, a bright, very bright, intelligent human being, someone with a great deal to contribute to society, who was also in with a chance of becoming a future Olympic athlete. So not a scrounger or a free loader then. I’m beginning to understand what Sir Terry meant when he talked about holding onto the anger. It’s not angry ranting, well not always, it’s just righteous ire that burns the whole time. That’s why I have to write it out, it’s doing my head in.

The anguish of Dad’s last half year or so still haunts me and it probably always will, but it has also profoundly changed the way I see my fellow humans. I now realise, more than anything, that imagination is the most important gift we possess. It’s imagination that makes us able to see the other person’s side. It’s imagination that enables us to find a way through. It’s imagination that helps us understand that, if our enemies saw people’s heads off with a kitchen knife and post it on YouTube, the thing that raises us above them is that we don’t. It’s imagination that allows us to understand that torturing suspected torturers, ‘because they do it to us’ merely makes us one of them, possibly worse, because while they’re brainwashed and uneducated, we have the tools to know better and have made a conscious choice. It’s because we have imagination what we can realise that an eye for an eye merely debases all the arguments that our way is better than theirs at a stroke.

It’s imagination that makes us think before we wade in. It’s imagination that tells us when taking sides is necessary or merely petty. It’s imagination that allows us to step outside the bubble, accept and enjoy friendships with people who have different political viewpoints to us or are friends with people we don’t get on with. Politics is about issues and problem solving, it’s not a competition to see who can tell the most lies or paint their opponent as the biggest shit, although anyone looking at it now could be forgiven for thinking it is.

Another thing I have learned from the experience with my Dad is that everyone has a value, everyone is of some importance, everyone has something to contribute. I’m even beginning to see how Corrie Ten Boom’s sister, in Auschwitz, was able to feel sorry for the guards because they were so cruel. She thought their lives must be so empty, so without empathy, love, compassion and all the other things that make living so wonderful. I thought she was nuts at the time, now … I dunno. I am beginning to think it must be truly terrible to be as pompous as vainglorious as desperately in constant need of ego affirmation as Trump or Bojo. And yet I’m also beginning to see the humanity in the psychopaths, the killers, the mentally ill; those who I would have dismissed without a second thought as evil before I watched my father go insane. Perhaps I’m beginning to understand that many of them are just unwell. Mental illness is horrifically complicated but I seem to be able to extend them a courtesy I am finding it very difficult to give Boris, Trump and their ilk.

Dad always held the view that to get anywhere or do anything, you had to be a decent human being. He believed that being decent and honourable gets you quietly, unobtrusively, where you want to go. Because if you are straight with people and stand by them they will love you, and people who love you will move mountains for you. Not necessarily at the times, places or in a manner you expect but they will.

More and more, now he’s gone, I find myself sticking my head above the parapet, not because I care that much even, but because Dad’s not here to do it. Even if it’s just to joke about being the token bleeding heart liberal in some of my friendship groups and put a different point of view. But the thing is, despite half my friends having voted Brexit, which is a bit of a downer, we still all have so much common ground and we are still friends. Maybe this country will heal, if the politicians and the loud mouths will stop using the divisions to score points and entrenching them further; ie, shut the fuck up and give it time.

I can’t wait until this bloody election is over.

 

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28 Sep 2019 · 12:40 pm

A snapshot of blue …

It isn’t always like this, but I’m feeling a bit blue today. Then again, it’s probably only to be expected because I have, as we might euphemistically say, the painters in. But I’m going to take a few moments out to bang on about grief again because I suspect the way I’m feeling is pretty universal, so it might help someone to read it and see they aren’t alone.

As a human, I’ve always approached my life, and my future, with an attitude of mild interest, a kind of, ‘I wonder how this is going to turn out.’ That doesn’t mean I don’t try and mould my destiny at all, but I am aware how many other riders there are affecting the outcome of anything I plan. I hope my actions make a difference. Fervently. But I also think I’d be a fool to think I can realign the stars and guarantee anything about my destiny through my own efforts … well … you know … beyond how I react to what happens.

So my dad died. It happens to lots of people. And I’m OK with that and, more to the point, he was. It was his time, he led a full and wonderful life, he was loved … it was, dare I say it, beautiful.

The thing I am having trouble with is what happened first.

Losing someone to Alzheimer’s is really hard. There’s a strange mixture of emotion at the end where you’re glad their suffering is over but really want them back. There’s always hope, until they draw their last breath, that a miracle will happen and they’ll come back to you, that the gradual extinguishing of the light can somehow be reversed, the damage undone, your loved one returned. That you’ll find them again.

It can’t, although you might find enough of them. Dad definitely came back to us a bit at the end, I am in no doubt whatsoever about that.

They say that you don’t get over some things but that you do get used to living with them. That makes perfect sense to me. I try to give myself gaps to grieve, and in between, I tell myself it’s hormones, and yes, I am looking forward to reaching the stage when I no longer have a cycle, when Psycho Week, Misery Week (which is probably where I am now) Extra Special IBS Week and of course, not forgetting Brain Fog and Constipation Week all come to an end and every week becomes Mary Week. I do have a Mary Week once in every five and it is literally like being someone else, someone I really like.

Anyway, I try to convince myself that I’m busy or tired or hormonal but the truth of it is, I’m just sad. And I guess I’m learning that I have the strength to carry that sadness, which is nice, but at the same time, unfortunately, I’m not quite as strong as I hoped I was. Which is a bit of a shitter.

One of the things you can notice about people, if you look hard enough, is that those who are suffering or damaged are marked. They have an intensity, a brittleness about the edges, a burning brightness to their eyes that acts like a huge neon beacon over their heads saying, ‘Damaged Goods.’

Sometimes, I have to tell people that my dad died recently. It’s cringingly embarrassing because usually it’s part of an explanation as to why I’ve forgotten to pay a bill that arrived around that time, or pay in a cheque etc. I find it difficult to keep my voice flat. The emotion always creeps in and evinces an outpouring of kindness from strangers that is only reserved for folks they are very, very sorry for. Which is lovely but quite mortifying. I also find it really, and I mean really hard, to keep it together in the face of sympathy. No matter how hard I try to be dispassionate, they hear the emotion. I am always hugely grateful for their concern. But at the same time, it’s also difficult and embarrassing because there’s only a finite amount of time about which I can talk about it before I cry. I wouldn’t want people to stop showing sympathy though, or stop being kind. Because for all the awkwardness I feel, it’s also a wonderful and uplifting thing.

There’s very little time for sadness in modern life and even less in mine. Mum has dementia, someone has to run her financial affairs, pay the care team, make sure she’s OK. In some respects my weekly visits are a lifeline for both of us. It is wonderful to be able to talk to her about Dad. We discuss how we feel, how there was nowhere else for him to go, how illogical our sadness is when it was such a good death and when it was clearly a death he embraced. I think it helps both of us. Mum is definitely better than she was but she’s had a bit of a blip recently, which, I suppose, is  another reason why I feel the responsibility a bit more keenly than I usually do, and feel sadder.

Typically, now he’s gone, it seems that my life is full of events and problems that I would have discussed with Dad. Things he would have been able to advise me about so I could have made sense of it all and it would have been OK. Interpersonal stuff. It’s a loss I would have felt badly any time in the last one and a half, possibly two, years but it seems a great deal worse now. I think it would be melodramatic and downright wrong to say I’m sinking but it’s definitely a struggle. And I’m so raw. Oh blimey I’m ridiculously raw and so easily hurt about other things. Everything makes me cry, I reckon if I was walking round with a thistle stuck up my arse I’d cry less.

Politics hasn’t helped. It’s like the loss of Dad’s goodness and humanity, the compassion and empathy in him has taken it out of the entire fucking world. This week Britain has stepped up it’s efforts to make a monumental tit of itself on the international stage. The jury who found Boris Johnson’s proroguing of Parliament illegal have been warned to wear stab vests for fear of nutters who are also pro Brexit.

And the two sides bang on at one another, the left getting all drama llama about Jo Cox so they can tell the right that they are heartless twats who don’t give a shit in a way that makes the whole thing reek of faux. The right are totally unmoved, of course, since the majority of them are heartless twats who don’t give a shit and I really don’t understand why the left felt that point had to be made, since we are all already aware.

In the middle of all this, I’m still waiting to hear someone mention the good of the people. Not ‘the will of the people,’ as decided by a ridiculous sham of a vote to decide which side’s lies were less plausible (but sadly, a vote, nonetheless) not who should be in power, not how much better we would be if x or y was in power. Likewise, I don’t want to hear politicians spouting off in the media for the benefit of sending a message to other politicians via the press, rather than because they have anything meaningful to say to us.

Wouldn’t it be great to see someone in Parliament who genuinely seems to be there to try and make life better for the British people rather than to feather their own nest? Someone who isn’t a plutocrat foisting left wing sentiments they can afford to hold onto people who can’t, or conversely, someone who isn’t a hedge fund manager, wholeheartedly buying into the vileness of the party opposing them; a party which continues to demonise the vulnerable, the disabled, the chronically sick as scroungers and weaklings, quietly passing laws to punish people for their disabilities, or chronic illness, or having dementia like my parents, as if these people are to blame for their own suffering. A party pedalling the view that anyone who is vulnerable is weak and that those who are sick somehow deserve to suffer and are not worthy of our compassion. A party that puts the view that, contrary to the tenets of the Welfare State, those less fortunate, or who have fallen on hard times are somehow stealing for us when they are given help. A party which is punishing the elderly for having savings and being careful, stamping on the fingers of everyone working or lower middle class who has dared to put a foot on the ladder. A party which is quietly dismantling the welfare state and the NHS while everyone is too distracted to notice by the circus of shite that is Brexit and all that goes therewith.

We need normal people in politics. Now. Because at the moment, for the most part, it’s just a bunch of rich, entitled pricks doing what they like. On all sides. Their wages alone put them into the top 6%, the expenses some of them charge probably put them into Fortune 500*. Only 8% of Labour MPs are working class. We need a proper mix and we need to hold them accountable, the trouble is, voting doesn’t seem to work so I really don’t know how we do that.

* That was a joke even if it does ring true.

All I know is that watching the different parties competing to out do each other over the lowest depths to which they can sink I feel like something inside me is dying. It’s like grief has taken my reality filter out and I can see every crack and fissure and smell the foetid pus below.

But then something will happen that snaps me back.

For example, today I had to explain to the lady in the building society that I’d failed in some duty of admin because the summons arrived while my dad was sick and dying, or possibly while I was on holiday just before, or maybe in the six weeks previously while I was sick as a dog with a massive temperature and road testing different varieties of antibiotics to get rid of a persistent chest infection. The minute I fess up to her, I know she’s seen the rawness. My orange neon ‘damaged goods’ sign is flashing. She nips out back and comes back with a leaflet.

What to do in a bereavement, it’s called.

‘There are numbers in the back,’ she says. ‘And your doctor can help you too.’

My doctor? Shit.

Is it that bad?

Is it that obvious?

Am I more damaged than I think?

OK so watching my father go mad was pretty horrible, but I genuinely believed that once it was over I’d bounce back. It’s happening but it’s not a bounce and I’m aware enough now that in many ways I will never be the same. I thought it would be a lot faster than this and I thought I would get over it all. I’m not and it’s going to be slow. I guess the hard thing is having to keep going, having to carry on paying the carers and doing the pathetic amount I do to keep things running – the care and gardening team do literally ALL of it but I still find my few duties tough. I probably need to look what happened to Dad squarely in the eye but if I do that right now I’m undone and I can’t be undone, because … Mum.

Or maybe I’m just humiliated that another person has seen the extent of the damage, noticed my brittle cheerfulness and angular edges. I am worried and grateful in equal measure. As I try not to well up at her compassion and kindness I remember what Dad always said,

‘And this too shall pass.’

Maybe that’s the thing that’s so hard. Grief is amorphous. It oozes about inside you like a liquid and leeches out where and when you least expect. There’s no stopping it and no answer. You just have to ride the storm and wait until you are used to it, or it goes. It’s not as if I’m the first person who’s lost a parent, or the last … It’s just … hard.

On Wenlock Edge the wood’s in trouble;
His forest fleece the Wrekin heaves;
The gale, it plies the saplings double,
And thick on Severn snow the leaves.

‘Twould blow like this through holt and hanger
When Uricon the city stood:
‘Tis the old wind in the old anger,
But then it threshed another wood.

Then, ’twas before my time, the Roman
At yonder heaving hill would stare:
The blood that warms an English yeoman,
The thoughts that hurt him, they were there.

There, like the wind through woods in riot,
Through him the gale of life blew high;
The tree of man was never quiet:
Then ’twas the Roman, now ’tis I.

The gale, it plies the saplings double,
It blows so hard, ’twill soon be gone:
Today the Roman and his trouble
Are ashes under Uricon.

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