And for that, I am truly grateful

So many gratitudes. First, to the people who, through the year - inbetween, at the start and to the end - have sent good wishes, magic wands and generally happy news to make us smile. Thank you. I'm sorry that I don't always manage a prompt reply. Your words are lovely, beloved, cherished.

And we are all here, still: Dig is not receiving chemo at the moment. 2019 will bring, waving a magic wand with extra sparkles, a different round of treatment.

Then the gritlets. What reasons for gratitude they each are!

Squirrel, for the largest part of the year, has been the only family member with an actual paid employment from an actual real employer. Her job is crackingly good. I would half-inch it myself if I wasn't already performing my own daily dramatic performance. Working at a local theatre in ushering, support, selling, dogsbody, is giving her experience from the ground up. Hopefully she can wangle free tickets soon extend her abilities and interests in theatre to help it form part of her future career options.

Shark, meanwhile, is putting her gap year to excellent use. She's notching up volunteer work with the local hospice (all-round good egg), studying for further maths and, her icing on the cake, starting a job with a robot company, so she can put you all out of work. She also managed to lure Squirrel away from school in September (not hard) to go travelling in France, Germany and the Netherlands. (Not too difficult to get leave of absence, by the way. I wrote, ahem, a persuasive letter to the Camp Commandant, composing the national press invisibly between the lines, and they looked the other way for two weeks.)

Tiger is settling nicely into a sort of illustrative brilliance and natural gifted talent. If you don't see her drawings in some form in the future, then something has gone wrong with the world. Donald Trump has blown it up, or Tiger has nobbled her own abilities by going bonkers in a seriously profound way. Pity me then, daily trying to prise her out her room, coaxing her from the ceiling with pasta, and telling her that she is loved, no matter what, even when she has to do worse than worst.

There remain two other points of gratitude yet. One is the fact that HSBC haven't given our last meagre quid to the Chinese government - yes, I went to Hong Kong and swore my oath and made my prayer to the courts - and the other is the best, the very best, the reason we can be grateful now and forever, alpha to omega.

This reason was given, unprompted, like a gift into our family. It is now my new hymn, sang at the day's end with my other treasures, alongside, From little acorns grow big trees, and Things will take a turn for the better by Friday:

Yesterday I went to meet a horse! Wow, what a bad idea that is. It has gone on my reasons to be cheerful. I don’t have a horse.

I believe there is a vulgar phrase for this

The first time I heard it, was from the mouth of a Californian. Shit happens! I wondered what he was talking about. For a split second I thought he needed the bathroom.

But it is a useful phrase, is it not? Albeit from my perspective, not quite vulgar enough.

I am out to Hong Kong for two days. Sleeping on the plane (saves money); hotel in Wan Chai (run down); definitely not eating out (7/11 will do me a loaf of bread).

This is all thanks to the bank in Hong Kong, closing our humble company, freezing our account (yes we were in the process of closing the residue down) and giving the remaining money to the government. Unless we lodge a legal appeal at the courts. Which means me turning up, in person (wild-eyed, scary hair), to sign on the dotted line.

Cue: Shit happens!

Well, we have done the maths. It's worth one shot trying to wrestle our savings back from them, but not any longer case nor cause. The solicitor reassures us that the procedure is normal for 3-5 months. Well, yes, I can sort of believe this: what administrative 'crime' would you like to commit?* There is a scale of charges for that. When we overstayed our visas, a cash register sang a merry tune at the end of the paper trail.

And then. The hospital changed Dig's SuperJuice. The first line stopped working. His new chemotherapy recipe will no doubt bring new challenges to us all.

But his spirit of fortitude/endurance/obstinacy/constancy should be bottled too, then we could carry a token of Dig Resolve and nothing will ever ruffle us, ever again.

Even under extreme circumstance, Dig shows the same sort of constancy and supreme command of events which reassures me, regardless of wherever and whatever I am doing.

The same sturdy resolve, in fact, when I telephoned him in 2002 seeking his calm and firm reassurance. When throwing myself off a tall building seemed like a good idea because the children wouldn't go to sleep. I was in England. He was in Japan. I was off my head, sobbing. He was at a fancy celebration involving a diplomat and a tray of sushi. He removed himself immediately and talked me down from the rooftop. It was the best £200 I ever spent on a phone call.

Yes, he is still showing that sort of resolve and I need it. It will get me through the week, when there will be nothing suspicious about me as I hit airport security, unstable and unblinking, clutching a bag full of legal papers, an old DVD player, and three pairs of knickers. Without it, I fear for the hours. Even grit can be ground down.

But! There are bright, bright sparkles of everyday! Just like normal. When Shit happens!

I just created a lovely range of note books for a bunch of storytellers. You are fundamental to me, you lovely people, and I don't much care what form you take - in writing, vision, talking, telling. You take me into other worlds where all is not a simple daily desperation.

* By the way, we haven't done anything to merit closure, apart perhaps from not doing anything.

The Blasted Hour of Marketing Hangs Heavy on Me Again

Just come to Stall 13, Handmade and Vintage Doodah, CMK this weekend. Okay? It's a lot easier on all of us. To sell my beautiful Knicker Drawer Note Books I won't be wearing Shark's apocalyptic facemask, although I might dress up A Bit Steam. Not enough to frighten you with the goggles and plumbing and copper piping, just enough to enjoy myself.

I have a lot of lovely books for you there. Ridiculously under-priced. And, if you are the right person, I might even hand one over to you completely free. Yes, that might be a bit off-trolley, but I'm not out to make any more than simply feed my own addiction.

The Knicker Drawer Note Books are passion. Vulnerability and endurance; loss and remembrance; blasted hearts and broken souls and resilience and bloodyminded determination to hold the little things that matter. Like postage stamps and handwritten notes, which are timeless and endure well beyond any day's trials, like body blows and mortal wounds. Intimacy. Yes, that as well, in the materials I use and the crumpled cotton bedsheets from which I stitch. Am I rambling? Who gives a toss. I'll put those thoughts in a notebook.

My next step is to sit in front of the computer, DOING MY MARKETING. Pity me there. I will be cursing and threatening Facebook (which I hate, much like a 17thC Puritan facing down Satan), and Twitter, which is maybe not so bad, because at least Donald Trump gives me a laugh.

Ramblings. Better committed to a lovely tactile sensory notebook, tied with ribbon, scented with perfume, and stashed away in a Knicker Drawer for my great grandchildren to wonder at and assume that I just drank a lot of gin.

Steampunk Asylum X at the Lovely Lincoln

My mood will be down, at least for a few days, while I sink to reality, the splendid upliftingness of the Steampunk Asylum X gone! Where a buoyant time was had by all in our tribe, including our Travelling Aunty, in her sea captain's hat and her golden octopus, coiled in a net, called Octavia, and hauled from the waves. Oh that time would come again!

Who could not love to be here, surrounded by all the gentle madnesses, the dedication to craft and to story and to living life a little splendidly? And, if next year, you cannot strap on your corset and don your hat, you must be too deep mired in some bad real world to be able to come with us and escape into fantasy.

(Just to reassure the concerned: Professor Pragma was not plugged in to the wall socket.)

Off to the Asylum

Ah! A perfect time of year! I strap unlikely items to my hat then off I wobble, down the road, all the way to Lincoln! Suitcase of magical books in hand, inspired by bits that fell off the car and old plumbing, wending my happy way to Bailgate Market Methodist Hall.

Professor Pragma is still standing (well, mostly lying down), having completed 12 rounds of chemo and now on a fortnightly drip of reduced juice to keep him going for the August bank holiday. If you see him, doff your cap. He deserves it.

And oh! What wondrous books! Saturday and Monday! (Remember, not Sunday. The very friendly Methodists will be enjoying a sing song.)

And, for the first time, the start of a new line in what will become the book bags...

The Mars Explorer! As The War of the Worlds ends, you're the first group of scientists assigned on an ambassador mission to build peace! Right? Anyway, you need the bag. Ta-da!

In all other news, there has been a lot of it. My tribe are all busy about their doings in adventuring ways creating more news than the Grit Station can handle.

Just come over to Asylum X and say hello. Remember, Methodist Hall, just down from the Assembly Rooms, Saturday and Monday.*

* But if I have to cart Prof Pragma off to hospital, sorry to miss you.

It's not the home register that matters...

A home-school register my fat arse. This is about getting all you parents and kids on a surveillance list.

The better to know where we are, little piggies, all the better to gobble us up.

1. The 'register' will give both schools and local authorities a free hand in bullying, abusing and generally lying to parents who express uncertainty that Tinkertop's school is doing the best for her. Especially when she gets the blame for having the crap kicked out of her in the playground.

Examples of poor local authority practice abound in my world. Rare it is, how we hear of benign hands and sympathetic nods to the alternative lives shaped by home education.

2. The government and media, continuous drum-banging of the words 'Home School'. But not 'Home Education'.

Oh how revealing is their language! Says the government with an agenda to enforce schooling: 'THERE MUST BE SCHOOL'. Education journalists, hang your heads in shame. Are you aware of the history of your words? Of philosophical inquiry into ideas about education? Of the difference between UK and US culture? Of what it means to school and to educate?

3. It's not the register they ultimately want. It's control over what's taught.

This is coming at home educators, just round the corner, hurtling fast. Stop going off into that field you ne'er do wells! What are you up to? You'll never learn anything useful from that blackbird! You must teach British Values and Citizenship!

4. And after the control come the inspections.

It's been a long-held belief by, um, almost everyone, that my children, like thousands of others, are invisible. If I mentioned to anyone, anywhere, that my children are invisible, I'd be sectioned before the week was out. But it's okay for the authorities to declare this paranormal state of my children to me and then demand that I make them visible.

5. Next... control over who's teaching, where a child learns, and ...how much money from your taxes can be handed to Pearson?

It's not a far leap into the imagination to create a situation where every child has part of their school career delivered* at home.

Ah, you school choosers! You will throw up your hands in horror and exclaim, 'We can't teach anything! We're working!' And the government will say, 'It's alright! Your child can follow their personal goals on a step-by-step program delivered by Pearson, on a database maintained by Capita! Look! We already tested it out on the home-schoolers!'

And you can rest assured, knowing that your child won't miss out on anything and you can go to work leaving the camera turned on and the robot in charge.

6. I've come to believe that home education, especially of the autonomous variety, is not understood by anyone, unless you're doing it or are in it.

I have had my guts wrenched out, over the years, trying to explain autonomous education to people; how it changes authorities, dynamics, power structures, what you think about the world, every blasted thing. That freedom has been based on trust. It's in the government's interest not to trust and to sow lack of trust.

So today, I just want to say, Oh fuck off, you ignorant Guardian tossers.

7. At which point do you Home educate? Home school?

All you innocent parents out there, with your cute gurgling baby and blasted sleepless nights. Are you teaching your child at home? We can see you, spinning that early-learning Einstein cot toy. The register will extend to you, pretty quickly, because your child will need to be tracked. And is Tinkertop attending her nursery place? If not, why not?

8. A register has nothing to do with home education and everything to do with the nut-jobs.

Sadly that little hoard contain not just the downright dangerous Monster Parents, but fundamentalist, extreme-thinking Jewish, Muslim, Christian groups who have surfed their knowledge of legal educating options to use the home educating world as a cover for their crazy ideologies.

I guess I'm not allowed to say that.


*delivered ... I remember sitting in a school hall in 1993, fighting a headteacher over their use of this statement: 'delivery of the curriculum'. Look now. Another of my infamous lost battles. And who's left around me to even see what the issue is? This is how our normal moves on.

Parent bashing

I see the Guardian is enjoying its pre-summer holiday fun with its now familiar 'Leave those kids alone' headline. Huh. Parents. One moment it's neglect; the next we're helicoptering.

I just want to remember a bit of background culture.

Not so many years ago (Sir) Michael Wilshaw urged more structured learning in school-based nurseries.

As I remember, he advised 'well-directed play', which I guess is code to parents for Teach your child how to play before they get to nursery at age 2! Then your little Tinkertop will be ahead at school and succeed in LIFE! Maybe his agenda was to reinforce the culture of school league tables and early testing.

I guess some nurseries took up the offer, telling Tinkertop how to play with the toy trucks in a manner which would comply with all road signals. Then upcoming parents could be properly instructed in the pre-nursery input expected of them. Direct your child's play to focus their learning potential and maximise performance in age 5 tests - realise your child's true potential!

But it's not the first time that the government, with its departments and think tanks, have set about telling parents what to do and how to do it, threatening us with the guilt of dire consequences if our child fails to comply.

As in, your child will fall behind if they miss one day of school. Your child will fail to get a good job if they don't follow the school rules. And (one of the best yet), Your child will fail if they don't have a good grasp of grammar.

As a semi-neglectful parent of daughters, who have between them missed some 10,000 days at school (and I have yet to find one drawback about this), I can truly say I want parents to rebel. I really do. I want parents to loudly call out nonsensical parent-bashing crap every time they encounter it. I want them to kick up so much fuss we can't see the pavements for the packs of feral kids sent out to see if they can construct a functioning alternative society before tea-time.

Let's face reality. Schooling is big business from pre-school to further education. The government has turned the whole lot into a retail job, running on the same lines as the outfits in your shopping centre department stores. Courses have 'sticker prices' and now it seems normal to talk about money, not widening a person's thinking, as the end goal to a life lived in schooling. Research, findings, policy-forming think-tanking: I suspect much of it. They are basically seeking to reinforce the schooling system that we have, rather than to radically approach and present challenging thinking.

So how about a different puzzle for us all to spin on. How many graduates do you need to staff a coffee shop?

Welcome to the ecare system

In the last month, my husband lived in hospital for over a week. He was admitted through the emergency route on his 7th chemotherapy cycle.

A week. The longest time he has yet needed to stay. Not surprisingly, he is depressed, tired, upset, and angry. Told he can go home, this is suddenly denied him and he must stay for another day. Then another 8 hours. Someone didn't scan down the onscreen information, you see? They only looked at the first line, and the second line gave different information which would have meant a different instruction and a different result.

My husband is close to crying. He wants to cry with frustration. He wants to come home. I feel him lost in the hospital and, as I make another trek across the hospital grounds, I am afraid of the future.

Anyway, background information about my husband, whom I have known for 30 years, it doesn't matter. Neither does his name matter, and neither does any interaction anyone might have with him.

None of this matters because now he is a barcode that needs scanning.

When his barcode is scanned, the computer screen instructs the assistant. The assistant looks at the screen. They do what they are told. Then they leave the room where my husband stays alone.

When the nurses, students and assistants come to scan the barcode, these are the four interactions I have heard offered to my husband, who stays in bed day, after day, after day, while I am scared of the future.

I have numbered these interactions 1, 2, 3 and 4, for your reading convenience.

1. I'm just coming to scan your barcode.
2. Can I have your barcode?
3. Hmm. Barcode.
4. No words. (Nurse enters room, scans barcode, and leaves.)

These thoughts strike me.

Your nurse doesn't need to be human. Perhaps this would help, because then we wouldn't be disappointed. A robot doesn't care.

The doctor doesn't need to be in hospital. They could be sat anywhere in the world - the USA, India, Australia - a call-centre operative, outsourced in a globalised medical supply system. Professionals working quickly and remotely; scanning the onscreen information and sending instructions digitally. This would be easier. We wouldn't expect a human to smile.

In the old days, there used to be folders that followed you around. A person could scan, quickly, the pages of information to make a judgement. Yes, that liver function has always been high: a strange abnormality brought on by reactions to treatment. We can see how temperature follows the same pattern, so yes, let's use judgement now, in a stream of oversight, discrimination, speculation.

But that is old style. Folders are lost. Hand writing is impossible to read. Mistakes are made. Reading from a screen, one line of information, without the oversight to impede the medical decision. We could fit in twenty patients an hour on such a rapid throughput.

I'm an old dinosaur. I don't belong in this world. There is a bright new future, and I'm not part of it. The healthcare services are now looking to 5G: robotic surgery, wearable devices, online doctors, remote procedures. Technological transformation of medical services brings in consumers and markets, buyers and sellers. New markets. New economies. The healthcare budgets of old nations are vast.

This is the language of healthcare. It is of the economy. It is 'new value chains' and 'beneficial partnerships'. They will 'improve resource efficiency' and 'meet consumer demands for greater convenience and freedom of choice' with 'value for money'. This 'technological transformation' will offer 'opportunities for telecom operators to penetrate new value chains'.

But the loneliness, confusion, and dismay that might result from an all-computer system, we could deal with, couldn't we? We could access the hospital range of touch-screen devices to amuse us as we sit alone in our isolation wards and side rooms. Viewing packages available on request. Prices range from day rate to long-term. This is e-care. Enjoy your stay.

In the playhouse

New Shed for Squirrel. Former playhouse. Roof changed from wood to polycarbonate after a holly tree fell on it. Big can of paint from Re-Use centre and result. (Much loafing about with books, I hope.)