Revelations of Neurodivergence

Revelations of Neurodivergence (part one)

This is a very deeply personal and quite difficult post to write for an assortment of reasons that I hope will become clear. It’s also something I feel is important and I also hope it may be helpful to others.

Last year in the autumn I was diagnosed as autistic, level one (what was previously referred to as Asperger’s). It took the better part of four years on a waiting list to get to an assessment; the psychologist at the pain clinic had been very helpful in getting me get that far. I’d filled in a 20 page assessment form, sent it off, and then waited. And waited. And waited. Eventually, worrying that it had gone astray, I rang and left a message. Nothing. Apparently they had NO admin staff whatsoever. Eventually a message was left on our answer phone, apologising for the delay, acknowledging both receipt of my form and also the fact that my information in said form strongly suggested a formal assessment was in order. Then they warned that the waiting list was very long. They weren’t wrong.

In the wake of my father’s death, I was contacted again, saying that I’d got close to the top of the waiting list and wanting to organise various things. This is where, for me, the process began to become painful. They asked whether they would be able to speak to someone who’d known me as a child, a parent for example. Bearing in mind I was 54 at this point, I found this first an offensive and pointless request, and secondly, when I explained my father’s recent decease and my mother’s dementia, a painful one. It did not occur to me that this information would not be placed front and centre of whatever records they then held.

Then there was another LONG hiatus. My mother also passed away. Then they made contact again. They wanted to know if there was someone who’d known me as a child who they could also talk to. I explained the recent decease of my one remaining parent, explained also that at 54 there was NO-ONE they could talk to who had known me in childhood and that my husband was the person who’d known me longest (since we were 18) and that he would have to do. I expressed repeatedly my distress and increasing anger that they were continuing to ask for “a parent or someone who’d known me as a child” when I had politely informed them this was NOT possible. There cannot be any condition, illness or anything that ever asks for such a thing. It is infantilising in the extreme. I told them this. I was informed that this was just how it was done. They apologised, but it began to feel very much like a not-’pology.

There were several sessions booked in via video link. Two people, a psychologist and a speech therapist, taking turn and turn about speaking to first me and then to my husband. They were both very pleasant. The process from my point of view was absolutely not. Again I was asked whether there was someone who’d known me as a child, explaining how it was needed for a proper diagnosis. I sensed the hand of a supervisor somewhere in the background insisting on prodding still further. Both my sessions were gruelling, taking several hours each. Endless questions, and most of them were those you would use with a child. I felt insulted and infantilised. I had to comment upon pictures from a children’s book, telling a story and describing the scenes. I’m a story teller, so it wasn’t difficult (but in my assessment letter, apparently I did it in TOO MUCH DETAIL) but frankly I was getting more and more angry at being treated as a child. The assessor was quite stunned at how much I could notice and observe in a single picture, and infer and deduce. That in itself is insulting. I have an IQ of something that is up there with the most intelligent people in the world; I’m a trained observer and a very experienced storyteller.

You’d think all that would be enough, wouldn’t you? But no. Again I get contacted saying that for a firm diagnosis they needed to speak to someone who’d known me as a child. Perhaps my brother, or an aunt or an uncle? At this point I became incandescent. I had thought I had made myself clear: there was no one who’d known me from childhood that it was even vaguely appropriate to speak to. More apologies. Another assessment session.

And a few weeks later, a letter, confirming that I am indeed autistic. I have read the letter twice, then shoved it in a file, because I am still furious. All of the markers that suggest autism were there, quite obviously, without the need for this endless requests for someone who’d known me as a child. There were at least 6 separate occasions when this was asked for, despite on the first time of asking me saying emphatically no. I cannot imagine a more disempowering and infantilising process, one which sought to deprive me of all personal agency over my own designation. I have considered making a formal complaint and still may but I do not have the energy to fight through the process. The assessors I do not blame; they were following the script of a poorly developed process, and I felt the heavy hand of a pernickety supervisor at every step of the way. But to insist that an adult of mature years somehow produces what is in essence a character witness to their childhood years is absurd and cruel. It shows the system is failing adults seeking assessment, because it fails to recognise that they are fucking adults. Sorry. The reason I went through the process was to try and understand myself. There are very limited resources for helping adult autists, and NONE of them address the long term trauma of being autistic in a world that despises and loathes difference. I will not be attempting to access those resources via the autism services locally. I cannot imagine they will be of any real assistance to me. Or, to be honest, any adult who has survived so far into middle age. I can only expect that they may be as infantilising and disempowering as the assessment process.

(part two to follow soon)

“The Bet” analysis of chapter 2

“The Bet” analysis of chapter 2

The inimitable “We Lack Discipline” are doing a chapter by chapter critique of my novel, “The Bet”. This is for chapter 2. I suspect it’s probably at least as long as the chapter itself.

Be aware that there are references to disturbing/upsetting themes, and some of the language is definitely not suitable for work. But it’s a superb analysis that has cheered me up enormously to know someone loved the book that much they’ve taken the time to work through it in this way.

https://welackdiscipline.com/2021/07/06/we-lack-discipline-reads-the-bet-chapter-2/

First chapter of “The Bet” gets a detailed critique…

https://welackdiscipline.com/2021/06/27/we-lack-discipline-reads-the-bet-chapter-1/

We Lack Discipline is doing a chapter-by-chapter review/critique of my novel “The Bet”. I cannot express how emotional I feel about this. It’s almost as if I were a writer of classic works. A real writer, even.

We Lack Discipline reads “The Bet”

It’s very gratifying to get new reviews on a book that’s been out a few years but when it’s the first of a series of articles on said book, it’s a definite red letter sort of day. https://welackdiscipline.com/2021/05/08/we-lack-discipline-reads-the-bet-by-vivienne-tuffnell/

Ice Cream For Breakfast

The last two years have been possibly the hardest consecutive years of my life. They’ve been packed with bereavement, sadness, illness (shingles twice, for heaven’s sake) worry, exhaustion, sleepless nights and endless pain. It’s coming up to the first anniversary of my mum’s passing, and today marks the first anniversary of the Covid 19 lockdown in the UK. The last year in particular has been something none of us alive today has ever experienced. The Spanish flu pandemic of 1918-1919 devastated the entire world in the wake of the first world war, and one of the things I’ve noticed is there’s very little reference to it in literature dating from the time. The war, yes. There’s a whole tranche of novels, poetry and so on, that deals with WW1 in great depth. But the Spanish flu? Not so much. If anyone has information on novels and poetry of that era that goes into any detail, do let me know as I am curious. But honestly, I’d probably avoid (like the plague?) novels that heavily feature our current pandemic. It’s just too close.

During the last two years, my creativity has taken a massive nose dive. I’ve often felt that creativity is the cream of life, the rich stuff floating up out of an excess of plenty. It’s not something that can be sustained when trauma and illness are ripping through your life. Creativity, for me at least, is about having spare capacity to take the elements around me and weave them into something new. With the last two years, there have been days where just getting through and still be upright at the end of the day was more than I expected when I got out of bed that morning. I’ve been channelling the occasional burst of creative juices into a work-in-progress called “On Hob Hill” which I hope to complete this year. It’s also gone into occasional poetry.

I stopped sharing my poetry on this blog for a number of reasons. One of those is theft. From time to time I notice search terms that suggest a school or college somewhere have asked their students to produce poetry. I’m not happy with plagiarism (who is?) and it worries me that so many seem to be unconcerned about passing the work of another off as their own. It’s rife, apparently. The other reason is that it’s satisfying to my inner needs to collect together every few years my poetry into a collection. There’s three published already, all with slightly different themes. The work of the last six months has been to gather together a new collection and publish it.

This is my longest collection to date. The title poem, “Ice Cream For Breakfast” was written the morning after my father died. The blurb for the new collection is as follows: “So much of life is about contrasts and polarities; a kernel of joy within sorrow, and a hint of sadness within happiness. It’s about finding a tiny taste of sweetness amidst the bitterness of bereavement. These are poems for the liminal times of grieving and trying to make sense of difficult experiences. These are poems about the wonders of nature, of the pleasures of living and of the absurdities and humour inherent in life.”

The amazing art of the cover is by Bethan Christopher, whose book “Grow Your Own Gorgeousness” I reviewed some years ago. She has a new book due out very soon, Rebel Beauty for Teens. https://www.amazon.co.uk/Rebel-Beauty-Teens-Unleash-Gorgeousness/dp/1789562252/ and it looks amazing.

The new collection can be found here: https://www.amazon.co.uk/gp/product/B08YQR65KM/ and if you are buying from other Amazon stores, please replace in the URL whichever store (dot com, dot de and so on). It’s only going to be in paperback. This helps reduce the chance of piracy, and other things like content ripping. I have a small number of stock copies, so I can supply signed editions in the UK only, if should this appeal.

I’m very proud of this collection, coming as it has in the wake of such a difficult couple of years. It’s taken a ridiculous amount of energy to get it thus far. One of the things I’ve had to overcome is a form of pernicious inertia: the whole, who cares, what’s the point, sort of inertia. I believe that poetry matters, that is says things nothing else can in ways that can reach directly into the soul and touch it deeply.

One more thing. If you are kind enough to buy a copy, please please PLEASE leave a review. It’s not about massaging my ego (nice though that may be) but rather the fact that the number of reviews, and the continuing additions of reviews on older books too for that matter, affect the algorithms and how a book is then added to things like “suggested books like this one” and so on. Thank you so much.

A reading from “Angel Lights”, a story for Christmas

A beautiful reading of “Angel Lights”, one of the tales from

Méchant Loup: Modern Fables

for Sensible Grown-ups 

https://www.amazon.co.uk/gp/product/B083HGHSRB/

read by Naomi, from Inanna’s Festival in Norwich.

https://www.facebook.com/vivienne.tuffnell/posts/10158901453546306?notif_id=1608289758035976&notif_t=feedback_reaction_generic&ref=notif

 

If you go further down the page, there’s some readings also from the WIP, “Voice from the Cave”, for the Winter Solstice. 

I’ve been fighting hard to keep going at anything right now, so this may be my Christmas post, as WordPress is making it all much harder to post anything. So may Christmas/Solstice/etc bring you much joy after a truly tough year and may 2021 bring us all relief and reunions. Bless you all. 

A Light When All Other Lights Go Out

A Light When All Other Lights Go Out

A Light When All Other Lights Go Out

How are you? I mean, really HOW ARE YOU? Be honest, if you have the strength to be, because it really does take strength these days to express your real feelings.

I’m OK. Not always. Not every day, and not through the entire day either but at this precise moment, I’m OK. I’m having nights where I cannot sleep. I get up, go down and sit on the sofa and read. I’ve sat outside with the dawn chorus blazing around me, as the sky is streaked with the rays of the rising sun, and I’ve slept until mid morning having crawled back to bed around 5am. I’ve had a few nights where I’ve slept a decent amount, though never unbroken. My weighted blanket helps, though as the weather gets hotter it becomes harder to use it as it traps heat; I can’t regulate my body temperature well at the best of times so the summer can be a real endurance test.

The last three months have been such a strange time; we’re encouraged to see things in a different light, and yes, for sure there have been some benefits of lock-down. I dearly hope that some of these benefits will be nurtured and encouraged. I thoroughly enjoyed this year’s BBC Springwatch series: three weeks of nature and focus on the beauty and the wonder of the natural world. It was a balm to my soul. So has my garden, and the life within it.

The chances are that despite restrictions being lifted I shan’t be travelling anywhere very far off this summer. My own understanding of the pandemic is that lifting restrictions is premature and that by and large, people will not be sensible. Even if most people are, with a virulent virus around, it doesn’t take much to raise the R level.

I am restless, though. I want to go and see friends and family; I want to go to some of the beautiful places that nurture my soul. Just because we’re allowed to do a bit more does not mean flocking in droves to locations of desire (cough Barnard Castle cough). One of the places I’d hope to revisit this summer was the Chalice Well in Glastonbury, and the White Spring a few yards away; there is peace there I can never fully describe. They’re recently restored the lid to the well itself, replacing the wood that had begun to disintegrate and they have restored the stunning metalwork design, revealing many details long long under layers of paint and varnish. I’d really love to see that this year. But I can’t. In the end, I ordered myself a gift from the shop at Chalice Well: a little pendant, of reinforced glass, filled with water from the well, topped by a vesica piscis, and decorated with a garnet gemstone. 

After I ordered it, I realised what it reminded me of: Galadriel’s gift to Frodo, a vial of water from her well, imbued with the light of a star. She described it as a light where all other lights go out. Frodo tucked it in a pocket and more or less forgot about it as his journey through terrors and trials took him to the edge of Mordor and the not-quite-secret entrance. It was only in the pitch black of Shelob’s Lair that the vial was remembered and brought out. The light drove back the ravenous monster, enough to try and make an escape.

I haven’t checked whether my pendant glows or emits light. The chances are it doesn’t and if it did, I’d worry. The idea of a sacred well becoming radioactive enough that the water glows is a horrible one. But it does emit hope, and in wearing it I feel a connection to a place where the barrier between the ordinary world and the world of deeper connections is thinner than in many places. It’s only a little thing and only a symbol of something greater; it’s a potent reminder of the light that can never be extinguished. And that gives me the comfort I need for the darker days that are ever present.

What are your comforts, your symbols that support you in this time?

Dame Julian and self-isolation – some lessons from the 14th century

Dame Julian and self-isolation – some lessons from the 14th century

Despite having her writings, we actually know surprisingly little about Dame Julian,https://en.wikipedia.org/wiki/Julian_of_Norwich the anchorite whose hermitage in Norwich remains a site for pilgrims to this day. We don’t even know her original name; she took the name of the saint whose church she became anchorite of. The church and the cell were bombed during the war but later rebuilt, stone by stone, and the place retains an atmosphere of calm and contemplation; the visitor centre next to it offers refreshments, access to their library and a lovely little gift selection. If you go, they also allow you to park next to the church if you ask for one of their parking permits that will ward off the eagle-eyed traffic wardens.

The 14th century was an especially turbulent one, taking in the Black Death (which reached Britain in 1348, ripping through populations weakened by 2 generations of malnutrition), wars, pogroms, The Peasants’ Revolt, social upheavals and religious movements galore. Dame Julian(born around 1342) saw the effects of the plague first hand, both the initial wave and the later wave that had a reduced effect. When she was around 30, during an illness that was almost fatal, she had a series of visions that are the basis for her writings, and which led to her becoming an anchorite after her recovery. While we know nothing for certain about her origins, education or life before the visions, given that she was 30 at the time, many have speculated that the likelihood was that she was or had been married, and may have had children. The surmise also goes that the illness she survived may have wiped out husband and children. Whatever the truth of this, the life she led after this cataclysmic illness and the visions was entirely different from what she must have led before it.

An anchorite was a hermit who pledged to stay in a single location, often walled in and supplied with the essentials of life via a small window. When a person became an anchorite, the service for the dead was performed, and they were then sealed in. However, they usually led productive lives, often making clothes for the poor and acting (via the window) as a counsellor to troubled souls. One of Julian’s visitors was the mystic Margery Kempe https://en.wikipedia.org/wiki/Margery_Kempe who wrote of her visit to dame Julian. http://juliancentre.org/news/margery-kempe-who-met-julian-is-remembered-in-the-anglican-church-on-9th-november.html

One of the most famous of Julian’s sayings was “All shall be well and all shall be well and all manner of things shall be well.” Sometimes people use this as a means of shutting up others who are worrying about what’s going on around them. Right now, there’s a lot of reasons to worry. Covid-19 is not the Black Death, but it’s a frighteningly infectious and potentially lethal virus, and there’s a lot of misinformation about it. Julian would have witnessed not just the Black Death but many other epidemics or pandemics that roared through the populace; mechanisms by which any disease spread were little understood then and it’s hard to imagine the terrible fear most people would have experienced. For many it may have felt like a judgement from an angry god. Even today, there are so-called Christians who are preaching that this pandemic is God’s judgement on a sinful human race; some who see this as stage in the end of the world prophecies that are supposedly laid out in the Book of Revelation. To that I say: utter tosh.

When the door closed behind Julian and she was sealed inside her cell, I wonder what she would have felt. Her faith, both in a good, kind, loving God rather than the hideous vengeful god usually depicted by the medieval church, would have kept her at peace, and her faith in the benefactors and supporters who ensured that she would be kept supplied with the necessaries of life meant that the usual worries and cares would be gone. She could focus on what she was there for: to pray, to work, to support others from her window, and also to write about her visions.

In my previous post I wrote about how pressured many of us feel by having so many reminders of what others (like Shakespeare) have accomplished in their time in quarantine. There’s a massive collective angst and anxiety that fills the air and reaches all of us who are sensitive to it, and many who otherwise would not be. It’s extremely hard to be creative when the world around us is filled with such turmoil and uncertainty and fear. It’s even harder when well-meaning people exhort us not to waste such an opportunity for extra time we didn’t know we had.

As well as the collective grief and fear and worry, there’s personal concerns that almost everyone is affected by; worries about money, jobs, family, the future. After losing my father six months ago, I had had a sense of relief that at least I didn’t have to worry about him getting the virus. The worry for my mother was short-lived, and replaced instead with immense shock and sadness when she passed away suddenly a few days ago.

I wonder how much of the collective grief that Dame Julian bore and prayed with in that little cell in Norwich, how many folks she comforted with her words of a loving God who cared for his children as a mother might. I would love to sit an hour in her cell now, and pour out my soul there, but I cannot. It may be many months before I can go anywhere that is deemed non-essential. But I can sit quietly in my home, and hold like hazel nuts the cares and sorrows of others, just as she did.

No, I won’t be writing my version of King Lear

No, I won’t be writing my version of King Lear

In the light of potential or actual self-isolation, lock-down or general quarantine, there have been a lot of comments, posts, memes and articles about how various historic figures used the time in quarantine to produce masterpieces. Shakespeare, for example, wrote King Lear while quarantined during the Plague. Isaac Newton worked on various theories while Cambridge University was shut for two years for the same reason.

I have seen lots of posts encouraging others to take advantage of the time spent at home quarantined or in self-isolation. Time to learn something new, time to write your next book, or meditate or read those hundred books we’re all supposed to read before we die. Indeed, if you can focus on something like that, I can think of no better use of the extra time. Better probably than tidying and cleaning cupboards.

There’s a reason why dear Will managed to write Lear during that time: he knew he’d need to have something new when life returned to normal because that was how he earned his living. Newton had means to live; he could afford to hole up in a family-owned house and just focus on his work. He also had no wife or children to concern himself with. He will have had servants to do the house work and cooking for him.

If you have lived with anxiety, both generalised and specific, these times are hard. I’m finding it hard to concentrate on anything. I’d love to be able to knuckle down and continue to write. Maybe as time goes on I will. But the added pressure of somehow now expecting myself to produce my greatest works NOW, simply doesn’t help. Indeed, I cannot but wonder that it might sour the work I produce because of unreasonable expectations.

Here’s my advice. Focus on caring for yourself and those around you; that may include creative enterprises, and since those can be extremely healing and calming, it would be wonderful if it did. But if it doesn’t, don’t beat yourself up about it. No one needs the extra pressure of false expectations.

Love to you all.

On the Dominance of Filthy Lucre

On the Dominance of Filthy Lucre

You’ve undoubtedly heard the phrases, “Money makes the world go round,” and “The love of money is the root of all evil”. In recent months, it’s become apparent to me that both these aphorisms are becoming more and more the reality, and not only does it annoy me, it scares me.

I’m not sure when I first noticed that the suggested products on the mighty ‘Zon were being steadily replaced by sponsored ads, but I really noticed it when my new book got its own page. Most authors have a look at what their books are paired with, and since I’d chosen (possibly naively) to list Méchant Loup: Modern Fables for Sensible Grown-ups https://www.amazon.co.uk/gp/product/1091667012/ref=dbs_a_def_rwt_hsch_vapi_taft_p1_i0

under the genre fairy tales, I saw that beneath the listing were literally dozens and dozens of sponsored ads, supposedly for products related to my book. When it first came out, the sponsored ads beneath my book seemed to be retold fairy tales by only a couple of authors; books that had either just been released or were on pre-order. I glanced at them out of curiosity but none appealed to me. Méchant Loup isn’t a collection of retold fairy tales or even reimagined ones (with one exception of the title story), and given it’s intended for “sensible grown ups”, some of the sponsored ads were way off mark. Most of them if truth be told. I’d hoped that I might gain some traction in this category but I’d have been better listing in literary fiction. Or perhaps not.

The trouble is not just as an author. As a reader, I do glance at the suggested books under the listings of books I have enjoyed. But now it seems that the complex mathematical equations needed to predict what someone might like have gone terribly awry, directly as a result of the proliferation of paid ads. I suspect that few authors don’t now use paid advertising; from what I have heard through the jungle drums, it’s with diminishing returns. Some authors do not recoup from sales what they spent on advertising. I’ve yet to do a poll, but my gut feeling is that the general trend is spending more and more on advertising and get less and less back.

Being a writer is becoming ever more a mug’s game. The ones (like me) who are creating the content (what a hideous phrase) are not the ones garnering any real monetary rewards for the work. Worse still, it’s becoming horrifyingly common to discover that author mills are churning out books, often scraped illegally from the works of others, altered enough to pass the checks needed to be published, and published en masse, with paid reviews convincing enough to lure in more buyers.

Can you hear me sighing heavily?

It might have been the collective sighs of all of us demoralised writers that created Storm Ciara.

Everyone who can grab a piece of us is doing so. Every day I read of other writers who are being forced to give up doing what they love because they can no longer afford to do it. Don’t get me started on the continuing phenomenon of pirating books. One friend has done something I admire immensely, and has backed away from commercial publishing, and is producing limited edition, hand-bound books, available from her directly.

https://kathysharp2013.wordpress.com/2019/04/11/adventures-in-bookbinding-the-herbarium/

It satisfies the soul, and evades the risk of having your work scraped, pirated or plagiarised. I lack the skills to do so, but hats off to her.

The new book has been out a month and has now 7 fabulous reviews, but the initial burst of sales is dwindling, and I fear that before too long it will, along with all my other books that I cannot pay to advertise and will not even had I the money (because it’s clear authors are the cash cow of various industries), languish with only occasional readers.

I don’t have any answers. I try to pass on news about the books of others when I can, and appreciate those who have done that for me. We live in a world where filthy lucre is the only thing that seems to matter to the vast majority of the population; it makes me more and more want to retreat from it all, and not participate in this orgy of capitalistic nihilism.