Category: dyspraxia

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Liminal thinking

I was thinking about freedom this morning, in that sleeping/waking borderland – which just made me want to use the word ‘liminal’, one that I’ve learned (or relearned, because I think I might have come across it when I was studying sociology, forty years ago), that lovely, slightly hazy, slightly scary word and concept that speaks of borders between places, between states (in both senses of the word) between meanings, perhaps. Or maybe I’m just talking pretentious boll*x again.

I’m reading a book which has been sitting on my Kindle for two and a half years (I checked, because it was originally recommended by my therapist, and I mentioned it in our session on Thursday, and couldn’t remember how long it was since she’d suggested I read it, and I said ‘a couple of years’, which surprised her, so I checked, and I bought it in April 2018, which makes my guess an underestimate, and puts in perspective how long it’s been sitting there unread, and also how long I’ve been seeing her).

When I bought it I read the opening and decided it wasn’t for me (these days I usually download the free sample before deciding to buy, unless it’s a sure-fire author I’ve read before and know I will enjoy). As I told my therapist, I didn’t exactly fling the Kindle across the room, though I might have done if it was a paperback. But this time I’m finding it more interesting, so I’m persisting. It’s a semi-mystical, Jungian exploration of women’s lives and psychology related to mythologies, but I won’t say the title until I feel I’ve got something I want to share from it.

Anyway, when I was in my ‘liminal’ state this morning, I remembered recently talking about freedom and constraints and how constraints are liberating, which seemed to me (this morning) rather Orwellian, so I needed to sort out what context I’d been speaking about. Then I remembered that it was the way in which having a routine frees your mind from having to make decisions in the moment. Constraints, or ‘boundaries’ (which brings me back to liminal states again), relates in my mind to dyspraxia, because it seems to me that a lot of the impact of dyspraxia is around difficulties with knowing where you are in relation to boundaries, in time and space and maybe other things – social acceptability, perhaps, or expectations – and how to manage those relationships. Okay, so that does sound like pretentious boll*x, but when I think that way I feel a buzz that I’m getting close to something interesting and exciting.

Maybe my life is permanently liminal because I am always negotiating my way between this and that, never quite knowing where the boundaries are until I’ve crossed one, which can be catastrophic, or thrilling, or both, or just trivial.

Where does this get me with thinking about freedom, or boundaries, or creativity, or how I find a better way of living with myself? Let me think some more…

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Do It Again

I move something off the desk, balance it on top of another box of stuff, there’s a crash and the whole lot scatters on the floor. I moan, don’t I? I go on about how hopeless I am, but I never bloody do anything about it. Mea maxima culpa. What else can I say?

I’ve now made a start on both the projects I was talking about the other day: the website and the jumper. I had to give up the idea of using WordPress for the website because the client doesn’t like the free domain (appended with a nine digit number), but equally doesn’t want to have to pay for hosting for just a couple of pages. The websites I used to manage I hung off my own hosting, but I don’t want to commit to doing that long term, and anyway, it’s so long ago that I’m not sure how I did it, and it has undoubtedly all changed since then, and I don’t want to have to go there. But I bought the domain name she wanted for five years in advance, and then discovered that I still couldn’t attach it to a free WordPress site. So now I’m trying to do what she wants using Blogger, which I haven’t used for over ten years, and never liked very much, and I’m still not sure I’ll be able to use this domain I’ve paid for.

And this was all supposed to be something very quick and simple, just a couple of pages and a contact form, that I could knock up quickly for her on the cheap, a Blue Peter website made with cornflake packets and loo roll middles and stuck together with sticky-backed plastic, I can do it for you, no probs, couple of hundred quid. Should have told her to do it on Facebook.

So I’m learning how to use Blogger on the hoof (or ‘winging’ it, depending on which anatomical metaphor seems more appropriate, horse or bird related). Which reminds me why I started using WordPress in the first place.

But I have to have something to do – otherwise, I could be walking on the beach, or crocheting and listening to the radio, or untangling yarn, or weeding the garden, or mopping the kitchen floor, or tidying the study. ( Or even writing a book? Get real!)

On the dyspraxia forum, people talk about ‘super powers’ (I think that must be a life-coaching thing), and one that often comes up is persistence, sticking at things, not giving up – apparently that’s something dyspraxics are good at, like original thinking, creativity and sense of humour. But I’m always giving up, like Mark Twain giving up smoking – it’s easy, I’ve done it thousands of times. Everything is a disaster, I give up in despair, get up the next morning and try again, with a kind of brute doggedness, again and again and again. ‘Try again, fail again, fail better’ (Samuel Beckett). Beat yourself up about it, and do it again.

‘Do It Again’, Steely Dan

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Wherever That River Goes…

No post yesterday, because I got up and took a flask of coffee to the beach, arriving a few minutes  late for sunrise (but there was low cloud over the sea anyway) and writing in a notebook, which I might or might not copy onto here, but today I’ve got other stuff in my head so will go ahead with that.

One of the songs from my youth that listening to Amazon music has reintroduced me to is ‘The Ballad of Easy Rider’ by the Byrds, and now it’s stuck in my head. It starts like this:

‘The river flows, it flows to the sea,
wherever that river goes,
that’s where I want to be.
Flow, river flow,
let your waters wash down,
take me from this road
to some other town.

All (s)he wanted was to be free
and that’s the way it turned out to be…’

‘The Ballad of Easy Rider,’ Roger McGuinn & Bob Dylan

Notice how I subtly changed the gender in that second verse? It’s true, all I wanted was to be free, and that is ‘the way it turned out to be’, though not quite the way I might have expected (or even hoped for.) But I’m still very grateful for the way it is – despite the warning from another song of the same era:

‘Freedom’s just another word for nothin’ left to lose,
nothin’ ain’t worth nothin’, but it’s free…’

‘Me and Bobby McGee’, Kriss Krisstofferson

…a warning that kept me stuck in a sad but ‘safe’ situation for many years, which has brought another song to mind…

‘How often does it happen that we live our lives in chains
and never even know we have the key?’

‘Already Gone’, The Eagles

But that’s enough soft West coast country-rock from the late 1960s and early 70s for today.

Going to the sea yesterday morning did its magic of lifting my mood. I sat on my usual bench behind the beach café, writing in my notebook, and two people passing by said: ‘you’ve got a good spot there!’, and later on my way home I sat in the Rose Garden and read for a while, and another stranger said the same thing. But when I got home and started trying to tackle a project I’ve started, I had a massive setback which threw me into despair about how useless I am and what a charlatan because people have expectations of me and really I don’t have a clue what I’m doing and am scrabbling all the time to keep going, and everything is ten times harder for me and takes ten times longer than any normal competent person but nobody sees it and I hate myself and I hate being me.

I talked to my therapist in the afternoon about it, this massive fear I have of cocking everything up. She talked about adjusting to not being ‘needed’ any more, but I don’t want to be needed, I don’t want anyone to depend on me, I can’t stand the stress. I want to be free of all that. I want to run away again.

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State of Alert

I seem to have been dreaming much more vividly the last few nights – vividly to remember them when I woke up, but not now. And in the shower I was thinking about thinking – the constant, ‘stream of consciousness thinking’, the ‘catastrophic’ thinking as someone recently called it, though it’s not always dark, it’s where everything comes from, including all my writing, especially poetry. But no poetry today. And I think I’ll just write about what happened yesterday.

I mentioned on Tuesday that I had to get blood tests (which is normal) and a Covid test prior (within 72 hours for the latter) to my 6-monthly infusion on Saturday. I rang up both the relevant hospital departments and got the Covid for 14:05 yesterday and the bloods for 13:45. The lady in haematology told me sternly: ‘don’t come in more than 5 minutes before your appointment!’ Then on Wednesday afternoon I got an automatic text from a 5-digit number asking me to rate my ‘recent experience of our outpatients department’. This threw me. I ignored it, but started to wonder whether it had been triggered by my appointment – maybe they’d made it for Wednesday and not Thursday? It wasn’t worth the trauma of trying to call the hospital back (which is a nightmare for anyone, not just a phone-phobic like me) so I decided to leave it and turn up anyway.

Because my time management is so poor, I have a habit of allowing too much time to get to appointments, and arriving far too early, to make up for all those times when the reverse has happened. Plus I wasn’t at all convinced that 20 minutes between appointments would give me enough time. I knew where I had to go for the blood test, and where it was in relation to the car park, but not for the Covid, except that it was on the same site – I’d just been told: ‘turn left into Nightingale Rd, follow it round and you’ll see it on you left.’ I knew where Nightingale Rd was, but I didn’t know how long I would have to follow it round for.

Too many times I’ve set off with great confidence for somewhere, assuming that I’ve understood the directions, and got horribly lost. As it happened, that wasn’t the way it worked out yesterday – also the blood people were expecting me and saw me when I arrived at 13:40 and all was well. But it so easily could have not been.

This is the ocean in which my thoughts swim – in a constant state of alert. Stress was worrying away at me all Wednesday evening and yesterday morning – the poem I posted was a reaction to trying to deal with it. In situations like that, I try to think of the worst case, and really all it meant was that I’d have to make another appointment for the blood tests, either today or tomorrow.

It worked out – but there’s no guarantee that the next time will.

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Another Monday

Yesterday I had a horrible day. I spent most of it crocheting, but for once it didn’t make me feel happy, just guilty because I knew I was just doing it to fill the time and avoid all the more important things I probably should be doing to sort out the house. Also I had some phone calls to make, which I always dread (I did one, to the vet, but not another, to cancel something which is costing me money and I need to stop it). And I was expecting a ‘phone consultation’ with the breast cancer nurse, about my next 6 monthly infusion at the hospital. The one in April was cancelled, and if that had gone ahead this should be the last one, but I asked her and apparently it’s based on number (six times), not time (three years), so I’ll have to have another one next spring as well. Anyway, this one is on Saturday, and I knew about it because I’ve had the appointment letter since April.

I always have to get blood tests beforehand, and usually there’s a walk-in service at the hospital. But what I hadn’t realised until I spoke to the nurse is that now I have to make an appointment. Also she asked if I’d arranged a covid test, but I knew nothing about it being required. She said it should have been mentioned in the letter, and I wondered if it had been, because I hadn’t reread it, but when I said the letter came in April she said ‘well it wouldn’t have been then’ in that sort of fussy way that some people have that makes everything sound as though it’s your fault and you should have known. She’s not the same nurse I met when I was having the original treatment in 2017, and I didn’t recognise her name, but I know the drill now, or thought I did, till this year. She gave me a number to call to book a test at the hospital for Wednesday, and also suggested I call the blood-test centre and get the appointment there close to the same time, so I wouldn’t have to make two trips to the hospital. So I made those two phone calls and got both tests sorted for tomorrow.

If you’re thinking either: ‘That doesn’t sound too bad’ or ‘Poor you, that sounds horrible’, I should say that my bad mood was not related to having to make these extra appointments (though they didn’t help), but I’d been feeling it all morning as well. So much so that I was trying to find excuses to get out of going to yoga in the evening, but I made myself do it, and felt much better for doing so, which I knew I would, but still… It did help, and now I’ve made a commitment with the teacher that I will definitely go next week and she has put me on the list, so I can’t back out.

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Log Cabin

Very late this morning – although I’ve been awake for two and a half hours already. I decided to start doing my half hour yoga etc in the mornings again, and had a shower and washed my hair, and just generally time passed as it so often does.

Routines, as I’m sure I’ve said before, are both constraining and liberating. I half thought last week that I wouldn’t restart these two morning routines – exercise and blogging – but that’s because I was in a pretty shitty mood after returning from Cyprus. It’s so easy to slip down into chaos – especially for someone like me. Spontaneity can be exhilarating, but it can also be terrifying. Sometimes the chaos reaches a point where the only way I can deal with it is by ignoring it, and so it grows exponentially until it reaches a crisis and I fall apart emotionally. I was getting close to that point last week. But yesterday I wrote my blog; tidied the kitchen; loaded, ran and emptied the dishwasher; hoovered the stairs and landing – never really know what brings me back from the brink. I might say: ‘a decent night’s sleep’ but that wasn’t the case. Taking the van out on Friday? Doing that one, big(ish) stressful thing and then putting it to one side? Putting everything else into perspective? Maybe.

When I was learning to drive, the instructor told me that the greatest pleasure in life comes from doing something you really don’t want to do, and then afterwards, knowing that you’ve done it. Over forty years later, I think that’s still one of the wisest pieces of advice I’ve ever heard.

I’ve started a new crochet project – while still finishing off the previous one (both cardigans). I started following a pattern for what’s called a ‘log cabin’ design, starting with a small square, then every few rows rotating the work and picking up stitches along the edge of the existing work so that you have a rectangle that keeps growing – like a spiral growing out from the centre, but with straight edges. I’m using a ‘cake’ type yarn with large blocks of colour, and it looks pretty good. But I don’t like the shape of the pattern in the book – which makes a sleeveless waistcoat, which I’m not that keen on. So I’m trying to think of a way of adapting it to make a cardi with sleeves. This is the sort of thing I like to do – trying out something new and seeing how it works out.

Every so often I think I’ll give up on crochet, because it’s too repetitive and I feel like I’ve exhausted the possibilities. Then I get an idea like this and get interested again. Admittedly, I have cupboards full of projects that I’ve never finished, and garments that I’ve never worn. But I keep going back to it. And today I’m looking forward to sitting in the sunshine and trying again.

Maybe there’s a metaphor for life in there somewhere.

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Blame Game

By chance this morning, looking for something to read on my Kindle, I found a book I’d forgotten I had, by Tara Brach. In fact, I was apparently 25% of the way through reading it. She’s an American meditation/self help guru who was recommended to me by someone I met at a mindfulness retreat a few years ago. I watched/listened to a few of her videos on Youtube, and downloaded this book.

I needed something to read on the loo, so I read on from the point where it ‘opened’. It was an anecdote about Christmas dinner with her family, where every individual was being annoying for one reason or another. In a huff (she didn’t put it like that), she went out for a walk on her own in the snow, reflecting on this, and realised that while she was blaming them she was really angry with herself.

I finished on the loo and went to the kitchen, where the radio was playing Thought for the Day. The speaker was also talking about deflecting our own blame onto other people, and how we should face up to it and take responsibility (maybe not in those exact words). And I thought, well, that’s what I do all the time, isn’t it? I always take the blame onto myself, and like apologising, somehow it can make people even more irritated with me, and I with myself. What am I doing wrong?

My late mother-in-law used to say: ‘Everybody makes mistakes, but I try not to make the same mistake twice’, the implication being that you can’t be blamed for the first time, but you should learn not to repeat whatever it was that you did. Because if you do repeat it, you become culpable for failing to learn the lesson the first time.

I’ve taken a lifetime of blame, but I just keep on and on making the same mistakes. I’ve tried to learn the lessons, take responsibility, be a ‘better’ person – but there are aspects of myself which will never change no matter what I try to do – and I am trying to explore and accept them, because I’m tired of fighting against myself. It’s easy to get frustrated and irritated with the chaos of my life, but as long as it’s just me on my own dealing with the consequences, it’s not so bad as when it affects someone else, or there are witnesses, and I have to deal with their reactions, and my own reactions to them.

Yet at the same time I have this compulsion to ‘come out’, to explain myself, to be understood and accepted for who I am. Judge me if you must, but please try to judge me on my own terms, not by comparing me to the person you believe or want me to be (or think I ‘should’ be).

Perhaps all our perceptions are illusory, but my self-knowledge is based on a lifetime’s study, and – I think – deserves to be heard.

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Rabbit in the Headlights

Today I am in freefall. I know I’m losing my grip on life, I can feel time whooshing past me ever faster and I am so paralysed… I can’t move, I can’t function. I know this is a difficult time, I know the reasons behind this stress this week, but how do I deal with it? I am sitting here writing, rabbit in the headlights syndrome. I haven’t done my morning tai chi/yoga since Thursday, or blogged since Friday, though yesterday I wrote but didn’t post. I remember being in bed looking at the clock at 5:50 thinking – I’ll get up now – then finding myself sitting on the edge of the bed staring at the wardrobe, glancing at theclock it it was 7.05 and what had I done in that hour? I couldn’t remember – not asleep, just lying in bed, thoughts churning, maybe looking at my phone, everything pulling away from me, leaving me behind, sitting on the edge of the bed, panicking.

Someone on the dyspraxia Facebook group yesterday evening posted a question about ‘imposter syndrome’, other members’ experience of it, and its relation to dyspraxia. My feeling is that it’s probably not directly caused by dyspraxia, but like many things it can be a consequence of the things that are. It relates to what I was saying the other week about lack of control – when I manage to do something ‘right’, it feels like luck, or a fluke, because I can’t see any way of making sure it always happens that way again, but when I do something ‘wrong’ I can see exactly how my actions have contributed to it, though I can’t see how to stop myself doing them again. So past experience of getting something ‘right’ isn’t helpful in making me believe that I can do something else ‘right’, because it’s in the past, and there’s no guarantee that I can do it again, or that my past success wasn’t just down to some external conditions which won’t apply the next time.

Confidence and self esteem are supposed to grow through small incremental steps, through trying things and learning and taking pride in achievements, however small. There are plenty of things I have learned to do by practice and repetition – like driving a car, or cooking Bolognese sauce (though last time I forgot the bacon) or the first 28 movements of the tai chi form – but none of that is a guarantee that I won’t make a catastrophic mess of any one of those at some future attempt (though I admit that ‘driving’ is the only one with the potential to be truly catastrophic), and it’s not much of a help in learning something new, or applying old skills in new settings.

This is why other people’s beliefs and expectations about me become such a burden. I feel as though everything I’ve ever done is built on sand, however irrational that may appear from the outside. Every new challenge is a new opportunity for disaster.

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Days Like That

Haven’t posted anything for the last few days as I’ve been working on my submission to the inquiry of the All-Party Parliamentary Group on dyspraxia. Don’t know what they’ll make of it, but I did it anyway. I pulled together all the bits into a first draft on Wednesday morning; edited it on Thursday; then tidied it up, did the covering email and sent it off yesterday, in good time for the deadline at 5. It was 2,750 words in the end, just fitted into four pages, a very personal rant like the stuff I post on here.

I thought I would write 500 words today, but I’ve left it a bit late… didn’t get up till 7.30 and I’ve been to Tesco, then started on answering emails, and now the morning’s half gone and I still haven’t had breakfast.

I posted a cartoon yesterday, both on my personal timeline and the dyspraxic adults group.

https://scontent-lht6-1.xx.fbcdn.net/v/t1.0-9/117389940_10156978386461853_7954745779455467567_n.jpg?_nc_cat=100&_nc_sid=8bfeb9&_nc_ohc=u4aQUO4IzlkAX_Pizl4&_nc_ht=scontent-lht6-1.xx&oh=baf1401aac35c8d355809e44d346db1d&oe=5F711DC8

On my page I got 9 responses, on the group 105 plus 20 comments (admittedly there are a lot more people on that group than friends on my page!) But although everyone can laugh at this – and lots of well meaning people say: ‘we all have days like that…’ responses from the group were more on the lines of: ‘SO relatable – thanks for sharing this!’, ‘So fucking true Linda!’, ‘Oh dear gods yes! *facepalms*’ and one lady who said: ‘does anyone else get anxiety because they have so much to do…? I’m moving out soon and would love insight on that!’ I didn’t know what to say to her – because that’s exactly how I was feeling yesterday – but I suggested she post the question as a separate post, and might get some helpful advice.

Where is the line in between ‘days like that’ and a sense of underlying chaos that pervades and disrupts a whole life?

A young man posted: ‘Does anyone ever feel alone in this world with having dyspraxia?… My family just doesn’t believe a word I say even though they know I have issues…’

Here’s my reply:

‘I think the way your parents and siblings understand and accept you for who you are makes a huge difference. When I was growing up in the 1960s there was no understanding of neurodiversity at all, just kids who were ‘difficult’ in various ways and were expected to fit in and get on with it. This left me with massive issues of social anxiety and lack of self belief which have affected my whole life. Although I have had relationships in the past (been married twice), I never feel that anyone has ever truly understood and loved the “real me”, just the idea of me they have in their own heads, and until I found out I was dyspraxic two years ago, I felt all of that was my own fault and hated myself for it. Now I live alone and am comfortable with that, but it took a long time to get here…’

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Dyspraxia and Social Anxiety

Words churning through my head… they are always there, a continuous monologue/narrative – sometimes a dialogue, even a full-blown row. Is that dyspraxia related or something else? It is there when I wake in the early hours, it keeps me awake, I am exhausted but can’t sleep. It is there in the daytime, it churns around and around, I can’t focus, I can’t settle, I can’t concentrate because I am exhausted because I don’t sleep at night.

Is this dyspraxia? I know dyspraxia is responsible for the time I waste looking for the glasses/phone/keys/wallet/cup of coffee or whatever that I put down somewhere 30 seconds ago. That’s exhausting too. Dyspraxia means I have to read everything at least twice, three times, or more before it starts to sink in. It means I often don’t take in what’s been said to me without that being repeated, too, and often I just forget anyway, which means I panic when someone does speak to me and I can’t think what to say in reply, so even if dyspraxia is not directly related to social anxiety, it exacerbates it.

Sometimes I struggle to know what to say, then think of it too late, or I think of something I could say and I want to say it there and then, and I say too much then get angry with myself. When I’m in a group sometimes I’ll think of something to say but can’t get a word in edgeways, or when it comes to my turn I’ve forgotten it or thought better of it and someone says: ‘I think Linda has something to say’ but I just say ‘it’s ok, it doesn’t matter, it wasn’t important’ even if it was. Once someone who had been facilitating a group I was in said to me: ‘promise me that the next time someone interrupts you, you won’t apologise’. If I know I’m right about something (factually) and I say it I expect people to accept it, and if they don’t I get frustrated. I hate arguments, I won’t say anything which I think the other people will disagree with.

I apologise constantly, which ironically most people find very irritating. Usually when something goes wrong, even if I’m not completely responsible, I can trace it back to some contributing factor that’s down to me, and so I apologise for that. It’s easy to assume I’m responsible, because I do so many stupid, clumsy or thoughtless things. Apologising is my way of trying to compensate for all those things I do that inconvenience others, but it often doesn’t deflect anger, but rather makes it worse – this used to happen a lot with my parents. If my apologies are not accepted I feel trapped, because I don’t know what else to do, so I get frustrated, ashamed and angry – and I always turn anger onto myself. I can forgive other people but never myself, because I’m not in control of their behaviour, but I feel that I should be able to control my own.