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.

On Keeping a Dream Journal

On Keeping a Dream Journal

Dreams: there’s a divisive and complicated topic for you that will polarise most groups. Many people are indifferent to the concept of dreams, dismissing it and being scathing of those (like me!) who talk or write about dreams. My mother was one such, often telling me that dreams didn’t mean anything, couldn’t hurt me and weren’t important. I think that has caused me more damage in relation to my journey into deep matters of the psyche than anything else: that nagging voice in the back of my mind that poured scorn on my hope, my belief, that dreams, my dreams, are indeed valid and important. Identifying that voice may have helped to disarm it.

In the last couple of years, my sleep has been so disrupted that there has been less than usual energy for my brain and my psyche to dream, and I’ve had no energy to do more than occasionally jot down a very striking dream when sleep of reasonable quality has taken place. I’ve kept dream journals for years, sometimes with more discipline, sometimes not.

From this particular place of experience I’m going to share a few thoughts on keeping a dream journal. I’m not fond of the whole “How to…” culture, where blogs list 13 ways to do X Y or Z, often breaking it down into frankly silly steps. I work on the premise that anyone reading my blog is an intelligent, thoughtful person, so I’ll break it down into two sections. WHY keep a dream journal and HOW to keep one.

WHY keep a dream journal?

Well, if you subscribe to the notion that, as Freud said, dreams are the royal road to the unconscious, keeping a journal means you record the messages your unconscious sends you. During a lifetime where we spend roughly a third of it asleep, dreaming is an activity that fills that third of life. It’s important. Scientists still haven’t agreed what sleep is for, let along dreams, but the fact is, both are vital to health and sanity. As a writer, vast swathes of my inspiration has come via the dream world. As a troubled human being, the potential for finding respite from those troubles in the messages of my dreams is immense. Writing down those dreams means you record and fix, both on paper and IN YOUR OWN MIND, the content of the dreams. There’s a process that does double duty. I’ve heard people say they don’t dream or they don’t ever remember their dreams; resolving to record them tends to aid recall, for the same reason resolving to wake at a certain time (with practise) also tends to work. Having a record of dreams helps you return to them, to analyse them more closely and also to keep track of progress. Dreams often send coded information, rich in symbols and often in puns, often via terrible, groan-worthy Dad jokes, which can take time (even years) to decode. Unlocking one such dream may provide the key to unlock a lot of other ones; having a record of them is invaluable for this.

HOW to keep a dream journal.

The accepted advice is to keep a notebook and pencil by the bed, ready to record any and all dreams. Some might counter that they’d rather do it digitally, on their phone, tablet or computer but honestly, don’t. The act of turning on a device, the blue light, and the potential for checking messages, all may cause a dream to vanish like smoke. My advice is this: keep not one but TWO journals. One simple journal, a cheap exercise book that sits at your bedside with a pencil or pen, along with a torch (I have one that has a casing that glows in the dark so I can find it easily) so you don’t put on the light (even if you sleep alone, putting on a bright light drives away dreams). In this you record the dream when you wake from it. Your writing will be hard to read, but almost certainly legible enough to fathom most of what you wrote and then recall the rest. The act of writing pins down the dream material in your consciousness. If you wake with a dream, write it before going to the bathroom because the act of walking to another room, plus turning on a bright light, will drive away or diminish much of the dream. Then, the following day when you are up and about, take a moment or two to transcribe and expand the dream into the second journal. This journal is more orderly. I use a Leuchturm Jottbook. This range of journals is very organised. Each page is numbered, has a space for the date, and there is an index at the front. They come with several stickers so you can make a title for the entire book (for example: Dream journal, from Jan 2019 – December 2020) and the bigger ones come also with a sticker for the spine. Date each entry, including the year. I specify when the dream took place too, either by time or by a more rough estimate. Then when you write up the dream, give it a title as if it were a story. Believe me, it helps. Use elements of the dream as the title (example, “At the high waterfall with old school friends”), and then add that, the page number and the date, to the index. This means it’s much easier to check when a dream took place and also identify themes and so on. You often start to see patterns emerging, and for me it hasn’t been unusual for a dream to reference other dreams (very meta). Don’t censor or edit your dreams when you write them down; yes, some of the content may be irrelevant but you don’t know that yet. It’s not unusual for apparently silly or unpleasant content to be very valuable.

And that’s it. Sweet dreams to you all.

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/

Year’s Mind

Year’s Mind

A year is a strange thing. 365 point something days, during which the earth orbits the sun and spins on her axis, eventually bringing you back round to the same date. It can be bittersweet. Anniversaries and birthdays, markings of celebrations and of commemorations.

The first year after a bereavement is a time when it feels as though all the certainties, the solid anchor-points of life, have been ripped up and thrown away. No matter what you try, nothing feels right. You cannot get comfortable, as if comfort itself no longer exists. And when you do teeter on the brink of it, you jerk back, feeling guilty, uneasy and disconcerted by the sinking into an old normality that doesn’t really exist. Like that stomach-churning moment when you step off the final stair, and for a second, you believe there are more stairs and that you are about to fall, before you catch yourself, heart-pounding and filled with absurd fear. The Rev Richard Coles has a book coming out called “The Madness of Grief” detailing his journey through loss, and though it’s not a book I could read right now, the idea that somehow in that liminal time after bereavement we go into a kind of madness, resonates.

But the year thing, there’s truth in the old adage of time being a great healer. Cliche that it is, and one that should never be offered to a grieving person as a shortcut to actually sitting and being with them, it contains old wisdom. Each day you go through is a triumph; each sleepless night, a survival of that pain. The other week was the first anniversary of my mother’s death. She died in the first few days of the UK lock-down, and so much seems to have happened (and so little too, strangely) since then. The nights of excruciating insomnia, the endless rehashing of memories, the inevitable and (probably) unearned guilt, have begun to peter out finally. It’s unusual rather than the norm, for me to be sitting reading on the sofa at 2am, with a cat for company and a heated blanket for comfort, drinking herbal tea or hot milk. That year of mourning has given way to less raw, less immediate sorrow. Not gone away, no, but the sheer touched-on-the quick roar of grief has settled.

The Victorians partially codified their grief and their rituals and customs around mourning; deep mourning was worn for a certain period of time, usually a year, but sometimes longer, depending on the closeness of the connection. Sombre colours were then allowed, in varying degrees. I remember a colleague speaking of a friend who had lost her husband in his 30s, of how she wished she could use some of those customs because after that first year, when others had begun to forget about her loss, she knew that the grief was still very much in the early stages. She wanted to BEGIN wearing mourning for her love, because only the shock of the loss was past and the real process of grieving was starting at a point when others expected her to begin dating again.

Grief is a journey we all travel along in our own unique ways; the completion of the first year after a death brings for many a subtle change. It can deepen the grief, but for me, I have felt a change. There is great sadness, but it feels different. I’m not sure how to explain it but there is a lightening of the burden of sorrow. It’s still one day at a time but there are more good days than bad ones and I am grateful for that.

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.

Of Violets and of Moss

Of Violets and of Moss

There are violets that grow in my garden; there’s a patch of them at the end of the drive which is expanding steadily, year on year, and because the garden there is a raised area, the flowers are almost at eye level. You just need to bend over to be able to smell the tiny purple blooms. These are sweet violets, I should add, to distinguish them from dog violets which have no scent.

Speaking of the scent of violets, people often wince, and refer to the Parma violets sweets or to Devon violets perfume which was often the standby perfume gift for young girls in the 70s and 80s. During my childhood, while I liked Devon violets perfume (sometimes also April violets was the name) I was forbidden to use it as the pathology lab and morgue my father had worked at as a young man had used a violet- scented disinfectant and the smell reminded him so powerfully of death and decay he would become quite ill if he smelled it.

It wasn’t until many years later that I discovered that actual sweet violets don’t smell much like the perfume at all. In a big shopping centre in Nottingham, a flower seller was offering bunches of sweet violets for a quid. I bought some and I took them home, enchanted and enlightened. That pungent, sickly fragrance from the cheap perfume has only the very faintest of resemblances to real violets. Some years after that, living in very rural Norfolk, I happened upon an entire bank of them, glowing in the spring sunshine and filling the air with a totally heavenly aroma. You could almost imagine the passing of angelic wings giving off this scent as they passed. In Mrs Grieve’s A Modern Herbal, she cites the use of violet leaves as a successful nostrum for cancer, giving the case history of a nurseryman with advanced colon cancer being cured by a preparation of the herb (though the quantities used are vast!). I do not know whether any modern research has been done on the herb (the Modern Herbal was published in the 1930s) but I do wonder whether the properties need another look-at. I use a tea made with a mix of violet leaves and other herbs to encourage good dreams at night.

One of the curious aspects of the scent of sweet violets is that when you smell them, a few moments later, you can no longer smell them at all. The molecules have a sort of anaesthetic effect on your sense of smell; you go nose blind. So if you are walking through an area where lots of the flowers are in bloom, the fragrance will seem to come and go.

Much of the time, though, because violets are often regarded as invasive weeds, you tend not to find them in gardens at all. So letting ours spread means we are finally getting patches of glory. At this time of year you still need to bend over, get close to the earth to be able to partake of this glory. The accepted wisdom of why flowers have a scent is to attract pollinators but with violets, relatively few of the pretty blossoms actually ever produce any seeds. I don’t know why this is so but violets have more than one trick up their silken sleeves. Violets have developed numerous ways to spread. Violets spread by underground rhizomes and may form vegetative colonies. They also spread by a different seeding method. Flowers near the soil surface that never really open, called cleistogamous or non-opening, self-pollinating, shoot seeds out to establish a new colony away from the parent. For more info on this fascinating plant do have a peep at the link here: https://awkwardbotany.com/2020/07/08/the-hidden-flowers-of-viola/

For me, violets are an unexpected gift from life, quite other than I imagined them to be. Perfumes rarely capture the true beauty of a scent, and this is one where the synthetic perfumes associated with the flower fall very short of the reality. Yardley have always produced a violet perfume; in my childhood and until fairly recently, it was very much the classic Parma violets sort of scent. But recently it was reformulated (to various online wails of protest, because it left behind the very sickly-sweet variant) and is far closer now to the mossy, green, and ethereal odour of sweet violets in a hidden nook. Guerlain does two perfumes that have violet at the heart, Apres L’Ondee, and Insolence, if you wanted to push the boat out as they both cost a hefty amount more than the very modest Yardley offering.

Another treasure you need to get close to to appreciate its extraordinary beauty is moss. In the last year especially, I’ve found myself assailed by more anxiety attacks and even panic attacks, than for many years. Purely by chance, I found a grounding method that works for me, and that is when I feel that rising tidal wave of panic, I look for moss. Even in the centre of Norwich, there is moss to be found. It sits on old stone walls as little tussocks of velvet; it hides between paving slabs and on rooftops. The purity of the greenness is soothing and calming; the texture is often soft and reassuring. The closer you look, the more you see. Little fronds uncurling, tiny flowering stems extending into the cold air, often holding beads of dew or rain like jewels being shyly but proudly held out for your admiration. Lichens too will draw my eye; these lowly beings are a scientific marvel and mystery, being not individuals but rather communities working in harmony for the good of all. Made up of fungi, bacteria, algae, lichens are everywhere, some only where the air is clean and pure. I’m currently reading Merlin Sheldrake’s book on fungi Entangled Life which has a chapter on lichens; it’s a revelation how little we yet know about lichens and fungi, and the discoveries are already challenging how we see life as a whole.

Today is Epiphany, the day when the Magi brought their gifts to the Christ-child, named as gold, frankincense and myrrh, and it seems fitting that I have brought you a few gifts too, of violets and of moss, of things you need to get close to the earth to begin to appreciate, maybe even on your knees to even see, and start to ponder on the need for humility in its truest meaning (that of being close to the earth).

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.