Category: friendship

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Rabbit in the Headlights

Later this morning, I’ll be going to the hospital for my annual mammogram, postponed from last month because of the lockdown. I don’t want to go – not that it’s that painful (though it’s never comfortable), but I don’t want to go to the hospital, or anywhere really – just as I didn’t particularly want to take the van out last week, but this time I really have no choice.

The card-making didn’t go so well yesterday, partly because I was, like Friday afternoon, trying something different (for the inside of the cards), and I only completed one. So I’m still not ready to send off my letters, which feels a bit as though time’s running out.

Thinking about all this yesterday after I’d posted – and when I was getting frustrated with how I was going to do it, and panicking a little in case I did anything that would ruin anything I’d done so far – it struck me that there is a distinct ‘first world problem’ side to all this. It’s all so trivial, isn’t it, on the global scale? Yet it feels so important to me. It feels – at risk of sounding melodramatic – like an act of courage, something I’ve had to psych myself up for, and have to keep motivating myself to continue. Now, not that long ago I would have been berating myself for that, feeling stupid, frustrated and angry with myself for making such a big deal over it. I’m trying not to do that, though several times over the last few days I’ve been struck by panic about it all. I honestly know how ridiculous and irrational all this sounds. This is a side of me that nobody knows about (unless they read this blog, and even then they probably won’t take it seriously). These are the sort of battles that I have with myself all the time, to ‘get over myself’, in that weird phrase that just popped into my head.

This is the rabbit-in-the-headlights me that somehow – not sure how – I manage to hide from other people a lot of the time. Life is easier if I don’t set her challenges, and there are enough challenges in everyday life to try to protect her from (though fewer during lockdown). I can never get rid of her – I’ll never ‘grow out’ of her if it hasn’t happened by now. She is the essence of me, and I’m not sure whether referring to ‘her’ in the third person is such a good idea, but there again, it does convey the point that ‘I’ don’t have a lot of control over her – I can threaten her and bully her but doing that always has consequences for me, because I’m the one who feels the pain (even more so when I get angry with her). But there are things which she/I now can deal with and enjoy only because I/she have persisted in making her/myself do them.

Little battles can be as difficult as big ones. I have to keep trying.

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Round Robin

I didn’t post on here yesterday, but I did write my annual letter, sent to a handful of people from years ago whom I’m still in touch with enough to send Christmas cards and write to once a year. I don’t really know if the recipients are pleased to get it or resent being sent a computer-written and printed ‘round robin’ style letter. I used to edit each one for the specific person it was going to, but as the years pass and the interval since I saw them all in person grows longer, I think – well, at least this is better than nothing. At least they know I’m still alive. One person sends me a similar letter, one sends me a handwritten letter, most just a card with maybe a few words or just the usual greetings.

The handwritten letter is from the longest-standing friendship of them all, a friend from school, who went to teacher training college in London for three years in the 1970s and returned afterwards to the village she’d left, married the brother of a girl we were at school with, and taught at the village school all her working life. The last time I saw her was at her silver wedding anniversary party in the village hall in 2004, and before that, her 21st birthday party. In the quarter-century in between, we’d lost touch, until my Mum, one day in the 1980s, had a phone call from her asking ‘are you the Mrs Rushby who used to live in…?’ and passed on my address.

The letter I wrote yesterday turned out to be a little longer (600 words) than these daily offerings, about how I’ve been, and what I’ve been up to (not a lot, apart from the wedding) and my plans for Christmas – which changed anyway in the course of writing because I got a message from my daughter saying that my granddaughter is now quarantined till the 16th because a child in her class has tested positive for Covid, so I won’t be going to see them next weekend. And as usual it’s a computer-produced letter, but I decided yesterday morning that I would make Christmas cards this year, using the vast array of card-making equipment (die-cutting machine, metal dies, stamps, inks, sheets of patterned card and paper, scissors, glue, stickers etc etc etc) which I’ve acquired over the last two years.

I won’t go into the background story of how I started that particular hobby (not today anyway), but I will say that although it’s fun some of the time, I also find it unbelievably stressful. This is partly because there is absolutely no way for me to avoid creating a massive mess with all the stuff, and also (and related) that it takes me ages to make anything because I am constantly looking for the thing that I had in my hand only ten minutes earlier.

Yesterday I started with a determination NOT to get stressed, to keep it simple, and tidy.

I will try again today.

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Part of an Explanation

In the post-waking and pre-getting up time between 4:30 and 7:00 this morning, because I hadn’t yet started reading anything new on the Kindle, or downloaded the next bit of the podcast I’m listening to (I have to do that in the wifi area, ie front room or study), I was browsing Facebook. On the dyspraxia group there was a post from a 77-year old lady whom I’ve chatted to before (let’s call her Jane, because that’s not her name), with a photo of a letter explaining to her that she isn’t entitled to a diagnosis on the NHS. I feel bad for her, because she can’t afford to get one privately, as I did, but she wants to be assessed to convince her family that she has real problems and isn’t just being difficult, in order to improve her relationships with them, who apparently don’t treat her very well.

But from my experience, quite honestly, my expensive diagnosis doesn’t hold much water with most of the people I’ve tried to explain it to – which is hardly surprising, because, hey, I’m dyspraxic, and not being able to explain things clearly and convincingly is part of who I am. Because there’s so little awareness, and because it’s in many ways more nebulous than, say, dyslexia or ADHD, and the ‘symptoms’ (poor short term memory, poor organisation, poor punctuality, problems with absorbing and processing information which manifest as not listening, not paying attention etc etc etc) appear as the kind of ticks and habits which are frustrating both for the dyspraxic individual and the people they come into contact with – the kind of habits that for most people can be overcome with a little thought and effort, but for someone like me appear insurmountable…

What was I saying before I launched into that mammoth sentence? Oh yes, convincing people that these are real problems that are hard for you to manage, and can they please cut you some slack. Even my therapist doesn’t always get how hard it is to find people who will respond positively to this. She once said: ‘But you have a severe learning disability and you can prove it because you’ve been formally assessed’ – which raises the question: how can that be true when I also have a PhD? (although nobody takes that seriously either). The brain (anybody’s brain, not just mine) is a huge mystery, and the more we learn about it the less it all seems to make sense.

I started wanting to write a comment to my Facebook friend Jane, to tell her that having a diagnosis probably wouldn’t improve her relationships with her family, and the support she gets from the Facebook group is likely to be more valuable. Mine hasn’t allowed me to go back and make more of the opportunities I missed, or help me find new ones, or taken away the sense that my life has been a bit of a shambles – it’s just part of an explanation of why I’m me.  

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The Lottery

Yesterday afternoon was my weekly Skype therapy session, and, not knowing what to talk about, I told the therapist about the stress and worry over the test appointments earlier this week.

‘It seems you’re worrying about the processes and administration more than what it’s all about, which is the opposite of what most people would do’ she said.

By ‘what it’s all about’, of course, she meant cancer – but honestly, what’s that to worry about? If that sounds flippant, we’re not talking here about any particular risk. The infusion I’m going for on Saturday (tests permitting, and I’m still waiting for the result) isn’t even directly related to cancer, but to reducing the risk of side effects from the medication I’m taking to reduce the risk of the cancer coming back/happening again. And whether at some point I’ll get cancer again, or osteoporosis, or both or neither is not something I think about on a daily basis – although I do, of course, keep taking the prescribed tablets and a calcium supplement. That’s part of my routine. And going for the infusion, although uncomfortable and annoying, is also routine – this is the fifth time I’ve done it, and that followed after six sessions of chemo, which were much nastier and lasted longer but were basically the same process, in the same ward at the same hospital. So I know what I’m doing, I just have to turn up at the usual place for 10:30 on Saturday, with my Kindle to read while I’m waiting (there’s always lots of waiting) and after that it’s out of my hands.

This harks back to something I’ve said before: that getting through cancer (in my experience) is not about being ‘brave’ or emotionally strong or staying positive, it’s about doing what you’re told, turning up for the treatments, taking the meds, trusting in the expertise of the medical staff, accepting any help that’s offered. In the end, it’s a lottery, but you can buy as many tickets as you can lay your hands on to improve your chances of getting through. Even so, you could be knocked down by a car any day on your way to the local shop, so why torture yourself by worrying about death when there are so many other ways to do it?

The therapist’s response was to say: ‘There are two types of people in the world…’ and I thought she was going to say something profound, but instead it was just: ‘…those who blame themselves for everything that goes wrong and those who never blame themselves, and we know which you are,’ which we’ve talked about so many times, and didn’t seem terribly relevant or helpful in this context. I was thinking more of Chekov: ‘Any idiot can face a crisis; it’s this day-to-day living that wears you out’, which was sent to me on a card years ago by a friend who never saw her fiftieth birthday because she died of breast cancer six months before.

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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.

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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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No End

Two compliments about my writing yesterday – one from an old friend on Facebook, one (actually, several) from a new one over socially-distanced coffee on the beach. As usual, I was overwhelmingly stressed and apprehensive about meeting the second, but found myself pouring out my life story and then apologising – even when I waved my arms around and knocked over my coffee, she cleaned it up before I could even think what to do next, and offered to buy me another one (I refused, naturally – it was my fault that it happened.)

I sometimes wonder why people are ever this nice to me. They learn, of course, when they get to know me better.

We first met on a writing course immediately prior to lockdown – I might have mentioned that before? I’ve got a feeling I have. I’d said something about my thirty-year-work-in-progress fantasy novel, and she said: ‘I’ll look it if you like, bring it next week and I’ll let you have feedback the week after’. I felt really embarrassed, but I printed out the beginning, past the ‘inciting incident’ (hero’s journey creative writing course BS jargon) and handed it to her at the next session. I’m not really sure why I, but I suppose I just thought: ‘oh screw it’.

At the next session – which was the last of the course – she was very complimentary and full of questions. All I could say was – well, I haven’t done anything on it for fifteen years because I don’t know how to end it, or even to get closer to the end. We all went to lunch together as a group, and I’d taken my books with me to show the tutor (it was a general invitation to anyone who’d got a book to show). She picked up ‘S2S’, started looking at it, then said: ‘Can I borrow this?’ so of course I said yes. We exchanged emails and made a semi-arrangement to meet up for coffee in a couple of weeks, but of course that didn’t happen. Since then we have exchanged irregular emails and last week finally fixed up this meeting.

I was relieved to find out that she hasn’t been doing any writing either, apart from a journal. We grinned wryly at one another about good intentions and motivation.

She writes short stories –and has sent one in to a competition since we last met. I said that I don’t do short stories because I can’t think of endings. I guess I’m basically a poet, since that’s all the muses – or the Universe, or whatever’s responsible for this stuff – ever seems to send me. And I realised – though I might have had this thought before and forgotten it – that the advantage of poems is that they don’t really need tied up endings or conclusions – they are just there, and open to whatever. Well, the ones I write are.

But the weird thing is that I’ve completed stories in the past. I guess it’s all about luck.

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Singing at a Distance

A few days ago I got an email from the committee of the Friday night choir I’ve been attending (on and off) since I moved here, saying that they are planning a Zoom rehearsal for tonight. I’ve used Zoom, for tai chi and occasionally for meditation (I prefer the Sunday evening meditation sessions, which are by Crowdcast, which means my picture doesn’t appear, the interaction is all through ‘chat’ and as no one can see me, I can carry on crocheting through the talking part). Even with the tai chi, though I’ve been doing that every week (except once when I honestly forgot) and do speak occasionally, it never seems to put me up on the main screen (thank goodness). I don’t know why this is, whether there is something technical to do with my laptop, or my speech isn’t loud or clear enough, or whether even the technology can recognise that it’s better not to put my face up onto people’s screens.

I don’t really understand how the choir thing is going to work. Of course, I sing a lot by myself when I’m by myself, but that doesn’t have to be in tune. At choir, I usually rely on the ladies around me to get it right, and hope I can blend in. The email said that the Musical Director has ‘some ideas of things we can do’. Knowing him, I’m sure he’ll make it fun. We have the music we were rehearsing for the Easter concert (which was cancelled, obviously). We were also supposed to be doing a concert at the Guildhall last month, but we never even started rehearsing that. I haven’t looked at any of it for four months, of course, but I know where it is.

The thing is… I’ve really appreciated having Friday evenings to myself, not having to think about going out and interacting – more so in that I have to go by car, and finding somewhere to park is a nightmare – not just at the rehearsal hall, but also around here when I used to get back at about quarter to ten. There’ve been Friday evenings when I’ve spent half an hour driving around looking for a spot, and ended up parking so far away that I then had a twenty minute walk to get home (though that has improved a bit since the residents’ parking permits were introduced eighteen months ago, although they’re not in operation by that time of the evening).

Choir is one of those things that has caused me massive amounts of stress – especially around concerts – but that I keep bullying myself into going to because – well, mostly I enjoy it once I get there, but also I feel I have to go out and interact with people. And actually, it is quite non-threatening, because chatting isn’t compulsory, in fact most of the time it’s frowned upon. And they are a very nice bunch – those I know enough to actually speak to.

We’ll see how it goes.

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Still #notwriting

I’m going to change tack today. Sort of. Thinking about making things – including stories – and the relationship between the process of making, the end result, and assessment of that result. I’ve been quite careful with the words in that sentence. I deliberately used ‘making’ instead of ‘creating’, and deleted ‘judgement’ to replace it with ‘assessment’. Even ‘end result’, which feels much more neutral than ‘product’ or ‘artwork’. Because there is a minefield here, in the language.

Yesterday I spent some time listening to (I don’t bother trying to watch things on my phone when it’s the words that are significant) assorted TED talks sent to me by a friend who tries to encourage me. The first one was by Alain de Bouton, about redefining ‘success’, which personally I didn’t think said anything new, though he is quite entertaining (I could see why my friend sent it, but to me it says she’s just missed the point of who I am). Then there were talks about ‘creativity’, including one by a writer of an extremely successful book about the capriciousness of inspiration, how can you ever know how anything you make will turn out, and, if you’ve hit the spot once, how can you ever be sure you can do it again?

This friend is always sending me stuff like this. She thinks I’m ‘creative’, but I’m never comfortable with that word. It sounds much too pretentious – like calling yourself an ‘artist’ or a ‘writer’. Every time I tell someone I’m a ‘writer’ I cringe inside, wondering where the conversation is going to go next – the same way I do when I tell people I have a PhD. ‘Poet’ is easier, because then they tend to be less impressed; they jump straight to the idea that I’m either a crackpot or a charlatan, and they either laugh it off or give me a wide berth (or both).

And now… I have ground to a halt. I am in front of the computer with tears rolling down my face. I have, unexpectedly, cracked through the armour and reached the soft place of grief, where I might say to the therapist ‘I suppose it’s a bit sad really’ and she says ‘It’s tragic’, and I take on board the pretentious, egotistical, over the top melodrama of the word and nod my head, speechless because I can’t talk through the pain. THAT is what I mean by ‘failure’. My inability to love, defend, stand up for the things I make.

I can’t write any more today. I give up.

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Rising and Retiring

While the cassette recorder is on my desk, there’s even less space than usual for Miko to squeeze into. Which makes typing even more than usually awkward. At least I have my reading glasses today.

Yesterday evening I was writing an email to an old friend and listening to music, and I got to thinking about the south of France, the scents of flowers and herbs, and the little shops in out of the way towns selling unbranded local soaps and colognes; the paintings of Van Gogh (partly because of the jigsaw I was doing earlier that morning when it was pouring with rain here); the woods around the retreat centre in Limousin where I stayed six years ago. I started putting together bits and pieces for a poem, including kittens playing in a pile of nets in the harbour at Sorrento (different country, I know, but same sea). Then into the music stream popped a young Joan Baez singing ‘Plaisir d’Amour’ and I thought ‘oh, how appropriate!’ but I’d already sent the email by then.

Why is it that I often feel quite peaceful and comfortable with the world in the evenings, but then almost always feel miserable when I wake up? No, it’s not related to alcohol consumption – I’ve thought of that. Someone once told me that what you think when you wake up relates to what you were thinking when you fell asleep, so make sure you’re always thinking happy thoughts before you drop off, but this is clearly nonsense. How can you know exactly the point you will be falling asleep before it happens, let alone control your thoughts in preparation? What would happen if you were lying there thinking: ‘Right, am I asleep yet? No? Better think of something happy then. How long can I keep this up for? How long do I need to keep it up for? Has it happened yet? How long am I going to have to keep up these happy thoughts? What if I drop off just when I’m getting frustrated or stressed?’ etc etc. You’d never actually fall asleep – unless this is just because, as I keep forgetting, my brain is weird and doesn’t act in the same way as normal people who can control that stuff?

I’ve been told: ‘You’re obviously not a morning person’, but that’s not true, I’m better if I get up in the mornings, I hate lying in late and losing half the day. But it’s like everything else, I have to motivate myself to do it, the activity, the process of getting out of bed, it’s not even that I particularly dislike it when I do it. Sometimes I even talk myself through it: ‘right, duvet off, one foot on the floor, sit on the bed, second foot on the floor, brace yourself with hands on the mattress, push down and straighten legs’. It’s the gap between thought and action that stretches out and out, as though thinking is a substitute for doing.