Category: dyspraxia

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The Next Fifty Years in 500 Words

I can’t use anything of what I wrote yesterday. I was trying to explain how I became who I am – as far as I understand it. But what’s the point of that? It’s only the pattern I’ve imposed on my memories from the context of where I am now.

How can I untangle how I feel about myself and the life I’ve lived and what part of that is down to dyspraxia and what is just who I am? Dyspraxia is all the frustrating, annoying, depressing, heart-sinking little stupid things that happen all day, every day. I have always known I was worthless. This is not new because I have suddenly discovered an explanation for it – it was always there.

I could carry on describing the last fifty years – university; struggling to find a job, failing interview after interview; rushing into marriage because someone asked me and I thought this was the only chance I would have to avoid going back and living with my parents; marriage broke down within two years; more shame, more guilt, more failure, all piled on  top of who I was, because of who I was; getting a job and working at it for nine years; marrying again and giving up my job at the age of 30 to become an ‘ex-pat wife’, not knowing that that would be the last full-time permanent job I would ever have; babies and post-natal depression and loneliness and coming home; getting a chance to do a PhD and thinking this would transform my life, then afterwards finding that at the age of 43 with a 13 year gap on my CV, still no one wanted to employ me despite my qualifications; more failed applications and interviews and a string of part-time admin jobs; breakdown of my second marriage, feeling trapped because I couldn’t earn enough to support myself so I felt obliged to stay; finally leaving to live on my own at the age of 54, happy to be living on my own at last, but still financially dependent on my ex – as I still am, living on a share of his pension – more guilt, more shame. After three years trying to create a new life, trying to find more permanent work, doing more training (web design), trying to write, trying to start a design/publishing business, I used money from the divorce settlement to go travelling across Europe, planning to write a book about it and support myself. Came back with even less chance of ever getting another job – did a TEFL course in Prague but couldn’t find teaching work without experience (and anyway I was a terrible teacher because of my lack of social skills and inability to explain myself). Used my share of the proceeds from the sale of the marital home to buy a house on the south coast and retire on my ex husband’s pension, where I am now, looking back over a lifetime of repeated failure, depression and self-loathing, and failing to write.

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Early Years

This is the opening I’ve written for my submission to the APPG inquiry into dyspraxia. I know it will need editing – and the post is longer than usual, because I’ve included a poem.

I was born in 1954, and at the time of writing I am 66. I was diagnosed with dyspraxia less than two years ago, in October 2018, and am still coming to terms with understanding it and how it may have affected my personality and experience of life.

I am the youngest of three children, with a sister (six years older) and a brother (four). I’m sure my parents loved me and did their best for me as they saw it, I don’t think I was ever abused, physically or sexually, but I struggle to find any happy recollections of my childhood. I felt as though my parents and siblings belonged to a closed world of ‘big people’, a perfect family unit of four, but that somehow I was the odd one out, a spare part, surplus to requirements.

I was a shy and timid child, and found it hard to make friends. I was always small for my age and late in reaching puberty. All this made me ripe for bullying – not so much the physical kinds, but the verbal, psychological kind, mostly from other girls, but also from my brother and his friends (unlike me, he was charming and popular, and still is), occasionally my father, and later my brother-in-law. If I complained, I was told: ‘you’ve got no sense of humour’, ‘it’s only a bit of fun’ or ‘don’t take any notice and they’ll give up’. Somehow, it wasn’t the teasing that was a problem – it was my response to it.

Maybe none of this is directly related to dyspraxia, but it is part of the emotional landscape of my childhood. More significantly I was untidy, forgetful, clumsy, ‘cack-handed’ and constantly in trouble at home for all those reasons. I learned to be ashamed at a very early age, and it was constantly being reinforced. Sometimes it felt very unfair, and I became resentful and sulky, for which I was criticised even more. Two years ago, my brother gave me a present – a tee shirt with the slogan: ‘The third child is always the difficult one’. Oh how we laughed.

I was academically bright, always in the top stream, and in 1965 I passed the 11-plus and followed my siblings to the local grammar school. However, although I enjoyed learning, I don’t think I ever really ‘shone’ at school – maybe because due to my shyness I didn’t engage in class. I don’t remember any teachers taking a particular interest in me or encouraging me, even though (perhaps because) I rarely did anything to cause trouble. I was terrible at practical subjects and sport, but I got on with my academic work quietly, if a little slowly, and slipped under the radar. I was always a ‘good’ girl – except at home, where I was evidently nothing but a trial to my parents.

Here’s a poem about that time which I wrote a couple of years ago:

The Awkward One

I never learned to smile.
I never learned to play the happy fool,
to put them at their ease,
to read their minds.

So I became
the awkward one,
the difficult one.
I learned to be alone.
I never learned to make a friend,
I never learned the way
to make them love me.

I hated mirrors, and cameras,
I hated the plain, sulky face
they showed me.
I knew that face,
with its curtain of straggly hair,
and that skinny body,
would never be loved.

I never learned to turn on the charm.
I had no charm.
I never learned to play the game.
I turned inside myself,
became invisible,
played my own game.

© Linda Rushby 25 March 2017
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My Two Penn’orth

Chatting on the Dyspraxic Adults Facebook page yesterday evening, I was asked if I was sending my experiences to the All Party Parliamentary Group on dyspraxia. The website says: ‘The inquiry would welcome evidence in particular from: People with lived experience of dyspraxia…’

Seems like a brilliant idea but… the deadline is next Friday. Well, that’s ok, I suppose – I wouldn’t come up with anything better in 6 months than I can in a week, but…

Where to start? Some of the stuff that I’ve already posted on here, I suppose. My experiences and feelings about my life and myself; my efforts to find help/counselling/self help over the last thirty-odd years (and the massive failure of those attempts); the chance that my current therapist had a previous client who was diagnosed as dyspraxic, and the similarity of our tales of woe (short term-memory, time management, untidiness, general chaos etc) prompted her to suggest that I look into it; reading about it on the web and a huge light bulb finally going on in my head; getting the contact details for her previous client’s assessor and getting a formal diagnosis.

I had a rummage through old blogs from early 2014 and found this:

When I was a child and teenager, just the idea that I might have a condition that needed treatment would never have entered anyone’s head, I was just shy, moody and difficult and I needed to get over myself and get on with it. I was 35 when I first went to counselling, and even then my Dad was very sceptical…

I don’t think I’m particularly ‘depressed’ in the sense of having a treatable condition. I just have a personality that people sometimes find disturbing or alienating, but I am who I am and I can’t help that, I’ve been like it since early childhood and my adult experiences have reinforced it. However I have also found ways of getting by – coping strategies – that seem to mask my deep feelings, and people who see only the superficial side of my personality are surprised to discover my underlying inadequacies and insecurity.

I used to think that it was my external circumstances that brought me down, not having a satisfying relationship or job or any deep satisfaction in my life, but I’ve done things to try and change that and I still feel the same – maybe because I still don’t have any of the things I just listed. It’s probably those flaws in my personality that prevent me from being able to have any of those things. I’m aware that all this becomes a self-fulfilling prophecy, but I can’t see any way round that.

Counselling seems to end up as regular dumping sessions going around in the same old circles and eventually the counsellors suggest that as I don’t seem to be making any progress we might as well stop. I think I must be the client from hell…

Linda Rushby 24 January 2014

Seems like that could be quite a good start

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Meltdown in Sainsbury’s

Let me start this post by stressing that I am not anti-mask. I don’t feel very comfortable wearing one, but I understand the reasons and am quite happy to conform – in principle. But today I had a bit of a meltdown in Sainsbury’s.

I’ve been wearing a scarf over my nose and mouth for shopping since the rules came in (and I’m still avoiding going into shops as far as possible anyway). When my daughter came to stay, and we were going out more often, she gave me two fabric masks that she had spare. They’re both in horrible flowery printed fabric, which I hate, but that’s probably why they were the ones she didn’t want either.

A few days ago I read about a study which tested the different types of face covering, and found that properly made fabric ones are the best, better than just a folded scarf like the ones I’ve been using. So I took the less hateful of the two to Sainsbury’s this morning, and put it on before I went into the shop.

The problem I had was that I couldn’t get the elastic to stay behind my left ear – and also my glasses kept falling off. I remember I had the same problem (with the elastic) the first time I tried to put it on, when my daughter was here, and she helped me with it and got it to stay on. This morning I was on my own, and had no idea what subtle thing she’d done to it to make it work. It was bad enough walking around the shop, but when I got to the self checkout it all went horribly wrong – I think partly because I was looking down – it kept popping off, and my glasses kept falling off, and I was trying to hold it on with my left hand and scan and put the stuff in the bags with just my right hand – a couple of times it came off altogether, but what could I do?

Writing this now, it occurs to me that I often have problems with the self checkout, so you might ask, why don’t I go to the staffed checkout? But the answer to that is that if I’m going to make an idiot of myself I would rather not have someone watching me – I know that the self checkout doesn’t make me invisible, but at least I don’t have to acknowledge and interact with another human being when I’m f*cking up the simplest tasks and being that crazy old lady that nobody wants in their shop.

And this is the thing that will never go away. There isn’t any way round it, no solution to the problem of me being me. I can try to hide – and that’s easier now than it used to be, now I can just hunker down and avoid going out into the world of rational human beings and mature adults, the world where the normal people are.

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Decisions…

I listened to that TED programme about decision making again yesterday. It takes me several goes before I take in what I’m hearing – same with reading, watching telly etc. This has always been the case, but I’ve always taken it for granted. Interesting to learn that it is typical of dyspraxia, and not just because I’m slow and stupid and don’t pay attention, which is what I’ve always believed. Or rather, maybe I am all those things, but there’s an underlying reason for it.

The format of the programme is that they interview people who have made TED talks about whatever the theme is that they’re talking about. One of the contributors yesterday was talking about how ‘hard’ choices are not always ‘big’ choices, and ‘small’ choices are not always ‘easy’. Their definition of a hard choice is where there isn’t a clear distinction between whether one option is better or worse than the other(s) – it may be that they’re all better on some criteria, but not on others. I recognise this problem very well – every day so much of my emotional and mental energy gets sapped by chewing over trivial decisions, because I can’t stop myself going round in circles trying to make comparisons between different factors. When I was a student in the 1970s, the focus was on ‘rational’ decision making, assigning probabilities and utilities to various outcomes and devising models, like cost-benefit analysis, to establish optimal courses of action. I’m glad to see that the field has moved on since then.

Another speaker talked about the importance of ‘committing’ to your choices. If I understand correctly, this is about coming up with a satisfactory explanation for why you made that choice rather than another – satisfactory to yourself, that is. This sounds like post hoc rationalisation, but evidently it makes a real difference to the subjects’ later attitude to the choices that they’ve made.

Just writing that now makes me think that there could be huge ramifications from this, in the ways individuals’ beliefs are formed and solidified. For example, what might it say about people who voted for Trump, or Brexit, and then find themselves having to live with the consequences? It also says something to me about the importance of narrative, or story – the stories we tell ourselves. And what about uncertainty? And unintended consequences? Because of course we can’t always predict the outcomes of our choices, or the likelihood of ‘success’ (however that is defined). And never forget the old cliché about ‘for want of a nail…’, or the more modern version, ‘the butterfly effect’ – what did I say a few weeks ago about banal events that turn out to be surprisingly significant, and momentous events that turn out to be surprisingly banal?

Well, this post started out feeling quite trivial, maybe even flippant, but in the writing it has triggered something in my thoughts, both about how my mind works – how I can never settle on a conclusion – and how the world works generally.

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Going Through the Motions

Going Through the Motions

Get up and do what you always do,
even though your head is full
of all the times it hasn’t worked before;
of all the reasons why it doesn’t work;
of all the many ways it might go wrong;
of all the problems you can’t imagine
until they happen.

You want to run away and hide,
but you’ve tried that before,
and it never worked
so why should it now?

This is life,
this is how it works.
Stumble on,
from one day to the next
and maybe you’ll
get away with it
for one more day.

Linda Rushby 18 August 2020

There was a post on the FB dyspraxia group asking how many members write, and what we write. I started thinking about poems I’ve written down the years which relate to my dyspraxia (even when I didn’t know that’s what it was). They tend to be the ones I don’t share much, because I don’t expect people I know to understand them or like the fact that I’ve written them about myself. The two I first thought of were ‘Cahos’, from 2005 (oh, look at that typo again – I may make that the actual title of the poem from now on) and ‘The Awkward One’ (2017, I think).

I saw the post at bedtime, and started going through my Google drive from my phone looking for the two I’ve mentioned and to see how many more I could find (a very bad idea when I was supposed to be going to sleep). And then when I got up and was doing my morning routine, I came up with the one above.

I could probably fill a whole book, but I doubt it would be very popular. From one point of view, these poems are seething with self-pity, self-loathing and shame – which is why I often keep them to myself. On the other hand, they are also searingly honest, full of pain, sadness, regret, frustration and barely suppressed anger. Both of those descriptions sum up my underlying emotional landscape a lot of the time.

The anger in particular WAS COMING OUT A LOT IN MY THERAPY SESSIONS towards the end of last year (oops, must’ve hit the caps lock without noticing, but that also seems quite appropriate!) I suppose my current task is to learn how to deal with it without turning it onto myself – incredibly hard and stressful, but I am trying.

One way of doing that is to have routines and stick to them even when I really don’t feel like it. Yesterday I skipped my weekly yoga-in-the-park session because I convinced myself it would rain – but then it didn’t. And I felt bad for making that an excuse for my lack of commitment. So I’m trying to deal with that.

I heard a podcast of the TED Radio Show on BBC R4Extra yesterday, about choice and making decisions. I need to listen to it again, then maybe I’ll have something to say about it.

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Tangled

I did finish the book yesterday (the one I was reading, not writing) and yes, there were some surprises in the last 10%, a couple in fact, when it seemed all was lost and then it turned around and things weren’t so bad, and then it turned around again… and I did some research on the author and found that my intuition about them not being English was completely wrong, they’re older than I thought, and they’ve worked in script-writing, which fits with the crisis-point-here style of plotting. And the sequel had a good write up, so I may try that. At some point. Not now.

Looking for something else on the Kindle, I bought three other books (that’s the way it goes, my virtual shelves are groaning with unread books just as my physical shelves are, three new ones bought with every one read) and found one that I have no recollection of having bought, by an author I’ve never even heard of, but I obviously thought it sounded good enough to try. I think it might have been on a special offer, because these days I usually download the sample before I buy, and I can’t remember reading that. I may start this one next, though its estimated reading time is over 11 hours, which means it will probably take me months.

I finished the book, caught up on the weather blanket (which I’d fallen behind on because I needed to finish a baby blanket for a friend of my daughter), and finally finished untangling the yarn for a sleeveless cardigan which was also abandoned when I started on the baby blanket. And I’ve bought more yarn. Which rather mirrors the situation with the books and Kindle books.

Today is a special day, because it’s the 17th of the month, which is the day when I start the next row of the blanket, do the next bit of the border, and add the next colour to the border. This is the seventh colour, and they’re already starting to get tangled. By the end of last year they were in a terrible mess and it took ages to sort out. I can’t find a satisfactory way of avoiding it – except I could leave the border and do all of it at the end, but I don’t want to do that. I have some plastic bobbins which are supposed to snap shut and stop the yarn coming off, but they won’t take a whole skein and I haven’t got many of the largest ones (they come in three different sizes). My daughter bought them for me when she used to work in a crafting shop, I’ve tried looking for them online and have found them but only in the two smaller sizes. I can try cutting the yarn so it just fits, but that will mean joining new yarn in more often.

Well, these are the exciting things that take up my time and metal energy. Happy Monday to all.

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Reading – (to be continued…)

This morning, I did something I haven’t done regularly for years – read in bed. For most of my life I’ve read in bed both at night, before falling asleep, and in the morning, after waking up. Then when I was regularly attending the sleep clinic in 2006-07, I was told that I needed to train my body/mind to associate being in bed with sleep and nothing else – if I was awake in the night for more than twenty minutes I should get up, go to another room and do something quiet and relaxing, and only go back to bed when I was ready to go back to sleep. Unfortunately, this never really worked – I could be awake in another room for two hours and feel myself dozing off, then go back to bed and lie down and my brain would be wide awake again. Over the last few years, I’ve started listening to the radio in the night – or rather, downloaded plays and readings from BBC Sounds – and sometimes I fall back to sleep, and sometimes I don’t, but I’ve never really got back into that habit of always reading in bed.

But it bothers me that the only time I read whole books the way I used to is on holiday, or long journeys – and even then, it’s been replaced by listening and/or crocheting. When you’re reading, you can’t do anything else, but if you’re being ‘read to’ (ie listening to the radio, or audiobooks) your hands and eyes are free to be doing something else – like crochet – or any other kind of handicraft, (or even chores come to that). And because I only read in fits and starts (often, to be honest, when I’m on the loo), I never really get into what I’m reading, not helped by the dyspraxic effect that I don’t take in what I’m reading on the first time through, and am constantly forgetting who’s who and what’s happened.

This morning, around six, when I’d already been listening for an hour or so, I decided to read from my Kindle, a thriller that came up as a recommendation based on my previous reading, and which I won’t identify because I don’t want to spoil the plot for anyone else. I’ve been enjoying it, but as I’ve only been reading it for 10-20 minutes or so a day, it’s been slow going, and I’d started to feel that it was becoming a tad repetitive. This morning I’d read three chapters, when, at exactly half way in (according to the Kindle read percentage), there came a catastrophic event, in which one of the protagonists was killed and it seemed all was lost. I couldn’t help but the think that the author must have read/been told the advice about having a major climax/plot reveal at the end of Act Three – and I was rather shattered that s/he’d killed off this character (or has s/he? It sounds pretty conclusive, but who knows?)

Dammit, I’ve run out of words again…

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Untangling Dyspraxia

I was trying to think what I would write about this morning, then saw this post on the Dyspraxia Adults Facebook group and it got me going in reply… also helped that what they were asking about was something that was already on my mind.

I didn’t get my Dyspraxia diagnosis until I was 42 years old when I was doing a masters at university… The university gave me a lap top to support me through the course but no human support.
I am 49 now and have never managed to unpick what issues I experience are down to my dyspraxia and what are just my personality … I would very much like to know what I should be seeking support for and what I should be accepting as part of my personality.

Here’s my reply:

I was diagnosed with dyspraxia at the age of 64. It’s taken me almost two years to start to really engage with it, and, like you, to try and sort out what is down to my dyspraxia and what my underlying personality.

It seems to me, looking back over my life, that so many things I’ve always considered part of who I am (social anxiety, interacting with people, untidiness, forgetfulness, always being late, inability to make decisions, not being able to finish things without giving up, self loathing etc etc etc) can be traced back either directly to dyspraxia or to the way it was dealt with (ie not at all) during my childhood and adolescence – in fact pretty much my whole sixty-plus years worth of life. In other words, my ‘personality’ has been completely shaped by it, and I don’t think it’s possible to separate the two – I’m sorry this probably isn’t very helpful!

Even since I’ve had the diagnosis, trying to tell other people – friends and family – about it doesn’t seem to help, because they don’t understand and either think this is just something I’ve read somewhere and/or that it’s just part of my being self-critical and ‘beating myself up’ and I’m not really ‘that bad’, or perhaps that I’m just making excuses for not listening or being chaotic.

But I have found being on this forum (which I only joined a few weeks ago) and reading about other people’s experiences and struggles is helping me to see that the problems I’ve lived with ARE real, not just excuses or down to “negative attiudes”.’

Well, I’ve just posted that, so don’t know what they will make of it.

What I was vaguely thinking about before that was that a few days ago I think I mentioned Taoism in passing at the end of a post, and was going to go back to that. The connection is me thinking about the ‘Path’ I’ve taken through life, and how it might have been different if I’d understood myself (or been understood) better when I was young. Because it seems I’ve been on this quest of self-discovery for a long time.

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Bother

Why do I bother? God knows. I haven’t got a clue.

I did another of the five items on the list yesterday – and a bit of another (sorting out my accounts, which is going to be a long job), and had a stab at another (renewing the insurance on my van) but got stymied by the technology, because I thought I could renew it online, but couldn’t see how, so now I don’t know if it will renew automatically or if I have to call them – which reminds me that the van itself is a can of worms, because I need to call the garage – but I don’t want to use it at present anyway.

You’ll notice there are still five items – I haven’t added any more, although I keep thinking of them, but I never remember to write them on the list. However, I did do last night’s washing up when I got up, and tidied and wiped the kitchen counters and sink (again). We’ll see how long that lasts.

I made a plan yesterday evening that if I was awake early enough this morning I would walk to the beach and watch the sunrise, but I slept in till 5.20, so there wasn’t time to get myself sorted and to the beach before the actual sunrise at 5.37.  And although I don’t really like lying in bed when I know I won’t get back to sleep, I still don’t want to get up either, even now, when it’s warm.

This is why I’ve decided that routine is so important, because if I know what I ‘should’ be doing, maybe that will push me (‘motivate’ is too strong a word) into doing things even when I really don’t feel like it (which is about 23 hours and 55 minutes of every day). Given that I’ve got quite good about doing my half hour of exercise and meditation, and writing my 500 words of drivel, over the last few months, I’m hoping that maybe I can squeeze some more useful and positive habits into my days.

I’ve given some thought in the past to how to get over the problem I was talking about yesterday, of never knowing where I’ve left things. One solution would be to constantly scan every room for anything which isn’t in its ‘specific place’ and return it so I can find it when I need it again – the price of liberty is eternal vigilance. I guess that’s what most non-cahotic (I like that typo, I think I’ll leave it) people do automatically – but the idea fills me with horror and deadens my soul. There wouldn’t be time for anything else, would there? But then if it actually worked, wouldn’t it save the time and stress of constantly searching for things? I think of my spirit animal, Mole from The Wind in the Willows, throwing down his paintbrush and running out into the springtime to cries of ‘Bother!’ and ‘Oh blow!’ and ‘Hang spring-cleaning!’