Obligatory Referendum Post

There are so many arguments, so much misinformation on both sides of this debate that I feel for a lot of people it comes down – at heart – to an emotional decision. Do you want to be part of Europe or not?

Now, I value sovereignty, and I love this country, and I can understand the view in favour of leaving Europe for that reason.

But at heart, I look at the UK and I see a nation which has never been closed. I see people from all walks of life; from all backgrounds. We havebeen a cultural melting pot since the Ice Age ended and the waters rose, and the “native” Celts were joined by Saxons, Angles, Jutes, Romans, Vikings, Normans. Waves of migrants since before the start of written history. It’s in our blood. It’s in our myths and legends. It’s in our NAME.

United. We’re stronger as group of four than we were alone. We’re better when we set aside our differences and work for a common cause. And I look at this debate and I see no difference between the United Kingdom and the European Union.

I see elected representatives from across Europe working together to unite disparate people and give us common safety and security. I see solidarity. I see hope for a peaceful future. I see cultural enrichment, as our traditions are passed on an explained to new generations, and have the freedom to grow and evolve with us.

I look at all of this and I think: What is patriorism? Is it a love of who I am and where I hail from? Is it a blind devotion to a set of laws and morals which would be anathema to generations past? What makes a person British? Is it Europhobia and distrust?

Or is it tea and crumpets, umbrellas on standby. Is it cream teas and castles. Green fields and rolling hills. Maypoles and country fairs. Cider, and beer, and ale, and wine. Freedom, and hope, and stubbornness and sarcasm, and a dry, endless pessimism which belies inner strength.

I don’t think any of those things will be lost to Europe. Rather, I believe they are the greatest treasure we hold; one which can only grow with the sharing. I am English. I am British. And I am European and I want to stay that way.

I’m voting Remain, because in my heart, I think that is the most patriotic thing I will ever do.

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Fitting In

I spent this weekend at a rehearsal, in the company of people I had never met before, but who shared a few key interests with me. Within a few hours I was chatting and chilled. Now, I don’t make friends easily (thanks, social anxieties!) so to feel relaxed around new acquaintances that quickly is a pretty big deal for me. Needless to say, I arrived home a few hours ago in high spirits.
My children were dropped off an hour or so later, in similarly good moods. We had the usual kerfuffle at the door with shoes and bags, with the only noticeable difference being that The Girl had been to a party at which face-paint was on offer, and had insisted on keeping the painted on Catwoman mask for me to see. Honestly, it was a pretty good job. I could tell who she was before she told me, which is always a plus.
 
So, to the point. We were sitting downstairs together before bed, and she gradually started to look a little uneasy. I could see the expression deepen as she told me her friends had Shopkins facepaint. Oh dear, I thought. I know where this is going.
 
Sure enough, the next thing she said was an expression of regret about her choice.
“Don’t you like Catwoman?” I asked.
No, that wasn’t the problem. Nor was it that she preferred Shopkins, or was unhappy about how her face looked. In all honesty, I don’t think she could really articulate what was wrong. And in fairness to her, it’s a challenging concept for a young child to put into words.
 
The crux of it, I think, is that she’s almost six now, and she’s picked up on the fact that in some hard-to-define way, fitting in and being the same is good, and being different is… not fitting in.
She’s in Year One, so I don’t think they’ve yet reached the stage of picking on the kids who are different (and the school is very inclusive, which I think helps prevent that attitude getting too entrenched anyway), but society as a whole has an unerring tendency to guide people into this mindset. Fashion. Trends. Adverts. They all, subtly or (usually) otherwise, guide people to the conclusion that fitting in is good, and sticking out really isn’t.
So when my daughter, aged five, chose to have her face painted as Catwoman, and several of her friends chose to be (identical) Shopkins, she was left with that odd, hard-to-place feeling that somehow she’d done something…not wrong, but not entirely right, either.
 
And it’s awful. A five-year-old girl feeling like she made a bad choice for being a character she loves, because it’s not the same as everyone else. As far as I know, no one even said anything about it. It’s just a concept she has already internalised.
When I was younger, I worried a lot about this myself. I always knew, deep down, that I didn’t fit in, and for a long time this made me panic and try extra hard to mask that fact. Now, I won’t ever claim I tried to fit in with the popular kids (it was never gonna happen), but I certainly did my best not to stand out, either. One of my best friends once described my wardrobe as the sort of thing “normal people wear in films”. I never quite passed for real-life normal, but I had near-as-dammit down to an art. I faded into the background like a movie extra. Never the centre of attention, but still part of the crowd.
I nodded and smiled when the conversation turned to TV shows I didn’t watch, or the attractiveness of actors whose names I seldom knew. I painstakingly taught myself to recognise double entendres and laugh with the rest, and I got used to never mentioning my quirkier interests, or denying them outright if people spoke ill of them. (“Oh, yeah. People should absolutely get more fresh air and not spend all their time playing computer games. It’s not healthy!”)
It took me a long time to have the courage to not care, and before I could be myself, I had to try out various alter-egos. I had my faux-goth phase. My jewellery-as-armour phase. My ostentatious-I-don’t-care phase. The last one still flares up now and then, but mostly, these days I have settled into quietly doing and wearing whatever the hell I want.
Still. The road to get here was long enough that the thought of my daughter setting off down it fills me with sadness. As her mother, I don’t want her to be at the start of a long road filled with heartache and self-doubt. I don’t want my daughter’s future to be a war between enjoying the things she really loves to their fullest, and putting some of her interests aside so she can avoid feeling like a pariah.
We had a conversation before she went to bed. I don’t think she really took it in, but that’s okay, because I’m very prepared to have it again, as many times as she needs to. It wasn’t long, but I made sure to tell her that I thought she looked fantastic with her Catwoman face paint, and that, if there was one thing I wanted her to learn from me, it was to be herself, always. To do things because she wanted to. And if it happens that the thing she wants to do is the same as the thing her friends want? Hey, great, no problem! But if it’s different, that’s not a problem either.
And this time, aged five, there wasn’t a problem. There wasn’t a: “Well why did you pick that.” So part of me feels a little like I sprang the “be yourself” speech early. But another part knows that for it to really stick, you have to either grow up with it or learn the hard way. And the hard way really, really stinks.
When the cliques start (and my memories of what teenagers are like assures me they will), I want my children – both of them, although The Boy has so far shown little signs of noticing what happens outside of books – to have the confidence in themselves to be themselves. Because you know, several times this weekend, I had the passionate wish that I had met that group of people earlier. That I hadn’t spent so many years thinking there were only a handful of people who got me, when it turned out that, all along, there was a place where I could feel entirely at home.
So the message I want my children to learn is this:
Don’t “fit in”. Find the people who fit you, instead. It’s well worth the extra time it might take to find them.

Epilepsy Week 2k16

So, it’s Epilepsy Week once again, and you know what that means! Time for some good old-fashioned awareness! 

I try not to repeat myself too much with this blog. I mean, I know I generally repeat myself anyway, but, along with my growing addictions to Twitter and Tumblr, this is one of the reasons I hold back from posting here all that often. I want to have something to say. To make a statement, rather than babble at a screen so often that the meaning of what I’m writing gets lost.

And I feel this is one of the problems with raising awareness. I see it with so many things. I want people to know, and to understand, but how do you do that? Awareness runs a risk of being: “Hey, there’s this thing called epilepsy, and it’s kind of a pain so it’d be great if you could all just, well, know about it, okay?”

…I mean, I’d rather that people know about it than not know, but ultimately, just knowing that it exists doesn’t really achieve much. And to educate people on what epilepsy actually is, and what impact it has? How do you do that in short enough chunks that people don’t get bored?

I recorded a ten-minute interview about epilepsy this morning, which will broadcast on BBC Radio Kent this week. Ten minutes, to talk and explain. Ten minutes of awareness. At one point, I was asked what impact it has had on my life.

How do you answer that question? Where do you even begin?

The truth is, I don’t know. I didn’t then, and I still don’t, but the best I can do is to start by saying I have had epilepsy my whole adult life, so I really don’t have a “before” and “after” to hold up and point at saying: “There. There’s the difference epilepsy made.”

30 days' worth of anti-convulsants in one not-so-convenient box

Let’s be honest though, taking two of these a day is part of it.

Sometimes I look back at my life, and I wonder to myself what it would have been like if I hadn’t developed epilepsy. Because, there’s no doubt in my mind that things would have played out very differently.

If I had never developed epilepsy, I would have stayed working full-time, and plodded along with my books alongside that. Maybe I’d have finished something by now, maybe I wouldn’t.

If I had never developed epilepsy, I would have kept my driving license, and done all my writing sessions up at Bluewater, meaning I would never have met my ex-husband, and my children wouldn’t be here.

If I had never developed epilepsy, I would have been an independent woman in my twenties, in full control of her life and with plenty to be confident about. I wouldn’t have had the twin bombs of losing my mobility and losing my ability to be out and about and feel safe dropped on me at the age of 18.

If I had never developed epilepsy, there’s a whole different life which would have rolled out in front of me, ripe with its own opportunities and pitfalls. Would it have been better? I don’t know. I never got to live that life. I never got to see where it would lead me. 

Yes. The perks of epilepsy for me include "an excuse for wearing awesome wigs"

I think it’s fair to say it would have featured fewer purple wigs though, which would have been a shame.

Now, I’m not in any way bitter about how things played out, for the most part. While I have my regrets (who doesn’t?) I have a lot to be happy about in fact. Some things just can’t be helped or predicted, and epilepsy is one of them. But you know, I don’t think that’s really what the question was about. I don’t think it meant “how has epilepsy changed your life?” so much as “how has society’s way of dealing with epilepsy changed your life?”

Because I’ll be honest, on a day-to-day basis, when left to my own devices I’m lucky enough that sometimes I forget I have epilepsy at all. Even on days when I have a seizure, when it’s all over and I’ve dusted myself off, I just get on with things. I’m so used to it at this point that during NaNo, I keeled over amid a sprint, and then got back up and started writing again where I’d left off halfway through the next sprint.

The biggest problems epilepsy has caused haven’t been because of the seizures themselves – they’ve been because of the people and structures in place around me.

When I started having seizures, several of my then-colleagues went out of their way to avoid me in case they had to “deal with it”. Others went so far as to accuse me of faking, because they didn’t know epilepsy can start out of the blue later in life.

I also lost my ability to drive, and there was no sufficient public transport in place to get me to my place of work. I had to leave my job at the time because my commute was as long as my shift. Travelling anywhere is fraught with expense and inconvenience and severely limited my independence.

Then, too, I became duty-bound to inform potential employers about my condition – at first because mandatory health questionnaires were still a thing, and then because if you want accommodations such as flexible working to be made for you, you have to explain why. It’s quite astonishing how many people can’t make those accommodations, or turn out to be looking for someone “with more experience” when you tell them this. Small wonder that a majority of people with epilepsy would rather conceal it from their employers if possible. (I didn’t have that option because my seizures were so frequent that there was no use hiding it, but you can bet I would have kept quiet if they were under control.)

I worry about having seizures while I’m out, not so much because I might injure myself – although I have done in the past – but because it’s an absolute lottery as to how the people around me will react. Is someone going to freak out and try to pin me down, causing me to spasm and hit my head? (Check. A well-meaning PCSO did that one a couple of years back.) Or will I get the well-meaning person who is determined to try and call an ambulance even if I have someone with me who explains that it isn’t necessary? (Check. People who know me well have had to insist that I’m fine on multiple occasions.) Will I get worried stares and parents hurrying their children away from me? (Also check. The irony here is that of everyone I’ve met over the years, children really do panic the least. They haven’t learnt to be scared of it yet, so generally they take it in their stride.)

Will people I have known for years suddenly freak out and not want to be around me any more? It’s happened before, and there’s a good chance it will happen again. I’m upfront about my condition because I’d rather not have people suddenly reveal their true colours further down the line, but how people say they feel, and how they turn out to feel when put to the test are two different things, sometimes.

And finally, just getting a diagnosis in the first place took two years. Two whole years of my life without knowing what was wrong with me, because my GP at the time took one look at my age and assumed I was just having panic attacks. Because the person responsible for my health decided that the results of a blood test ruled out the need to conduct a full investigation into the fact I was having seizures, and I knew so little about epilepsy and how it presents that I didn’t even question it.

When I look back, if there was one thing I could change about everything, it wouldn’t necessarily be to not have had epilepsy. It’s a bugger, sure, and I know my opinion would be different if I were having a seizure right now – they’re the exact opposite of fun, and they’re responsible for most of the bruises and minor injuries I’ve had in the last ten years.

But epilepsy itself is something I can live with. It’s something I do live with, and I’m so used to it now that I’m not really sure how I would feel if someone told me they could wave a wand and scrub it out of my life.

Frankly, if I were given the choice between not having had epilepsy, and the world just getting on and not freaking out so much that I (and millions of other people) do, it wouldn’t even be a difficult decision.

For good or ill, epilepsy is a part of my life. And it’s a part of the lives of people who know me. And it sucks, and I rail against it at times, but the biggest problem is not the seizures. When I’m at home, or around family, I have seizures and really it’s no big deal. A nuisance, sure, we’re all used to it by now. We get on with it. The problem is that so many people don’t seem to know what to do about it. So many people freak out and assume the worst, or write people off before getting to know them based on one word. And changing that doesn’t require a magic wand.

We just need some awareness.

Silent Soldiers

I have felt conflicted for some time about Remembrance Sunday. On the one hand, I think it is important to provide support for those affected by war, and to acknowledge those who lay down their lives and health in defence of their country, both now and in the past. I think there are few families who don’t have stories about those who fought and died or were permanently affected in the two World Wars. The scope was too vast for it to be otherwise.

Of my own family, my great-grandfather fought in the army and spent most of his adult life in an asylum as a result, suffering with shell shock. One of his older brothers never came home from the Somme. On the other side of the family, another great-grandfather was a naval engineer, and sailed on the HMS Ark Royal. We have photographs he took of its sinking. I grew up hearing stories of my grandmother’s seven uncles who went to fight and all came home (although not unscarred), and the woman who lived down the street never getting her only son back.

My grandfathers were both too young to see active service in the Second World War, but one was a parachutist and the other joined the Air Force – until he was injured and invalided out. At this time of year I remember them, and many others. I am aware of the sacrifice made by so many, for the sake of those at home.

And yet, I can’t help but wonder how well we as a nation still do remember. The message was “lest we forget”, and yet this morning, I sat and watched young children returning home from a parade, decked in poppies and cheerfully waving their Union Jack flags. Do they remember? Do they even know why the soldiers march? Why poppies are found on almost every breast at this time of year – a splash of bright red which will never be so dark as the blood which was spilt. Spilt by those who never got a chance to grow old. By soldiers who returned home, and tried to find a life for themselves in a world which could not comprehend what they had seen. By innocent civilians, caught in wars which touched every corner of this world. Wars whose after-effects lingered and festered, and laid the foundation for so many of our modern conflicts.

Lest We Forget, millions were sent to their deaths by generals who seldom left the safety of their bunkers.

Lest We Forget, innocent people were mown down by invading armies, or sent to die in horrific concentration camps, far from home and their loved ones.

Lest We Forget, soldiers returned home –still return home – with their minds and bodies torn apart by war, to a country which glorifies the dead while bypassing the living.

Lest We Forget, those soldiers, so long ago, did not all choose to lay down their lives. Enlistment left them with little or no choice. Their country loved them less than they loved it back.

Lest We Forget, celebration is not remembrance. Pomp and circumstance is not remembrance.

Lest We Forget, we fall silent to remember those who will never speak again. To remember the countless lives which ended too soon.

This is not the day to fly flags and remember that we were the “good guys”. This is not a day for patriotism and glory. This is a day – and the eleventh is a day – to remember the death, and the injury, and the lives which ended or were irreversibly changed in the name of war. To remember the lives which are ending even as we speak, and the lives which will never again be the same.

As I type, in the wake of the Remembrance Parade, I am surrounded by people with poppies and flags. Flags. Whatever your view about the poppy in modern times, there is no denying that at least it began life as a symbol of remembrance. But our flag did not. Our flag – any flag – has no right to be waved right now. I don’t want to celebrate the continuation of conflicts people died to bring an end to. I don’t want to celebrate national pride and jingoism. Especially not today.

AAW Words of Wisdom (I hope!)

So! It’s the second day of Asexual Awareness Week, and the theme for today is Words of Wisdom. I’m not an artist so I was a little hesitant for yesterday’s theme of art, but I am a writer. If I can’t come up with some at least passable Wise Words then clearly I am a bigger slacker than I’d previously given myself credit for.

Well. Wise words on the subject of Asexuality. It’s tricky really, because a large part of me is keen to stress that it’s no big deal, that hey, I’m not trying to intrude on anyone or be an attention seeker, or invalidate other Queer people by claiming a space for myself in the MOGII (Marginalised Orientations, Gender Identities and Intersex)/LGBTQIAP+ community.

But really, isn’t that part of it? Part of the problem? Asexuality is the new kid on the block, orientation-wise. It’s only just been recognised as an orientation and not a condition (and about time!), and frankly, most people haven’t even heard of it. So, much as I don’t want to stand up and claim to be some sort of special snowflake, another part of me feels that I have something of a duty to be Out and proud, simply so that another teenager out there maybe escapes the teenagedom I had.

I’ve probably mentioned before that I had a pretty sheltered childhood. I never did get out much – mostly I stayed at home reading books, playing computer games, and writing.

Boy, that writing though. I’ve never been a poet, but teenage me was blissfully ignorant of that fact, and wrote heaps of the damn things. Heaps of kinda rubbish stories, too. And you know what? A whole bunch of them might have been about being lonely, or death, or being different, but oddly enough, love and crushes weren’t a feature. It was a running gag among my friends that I’d skip over any scenes like that in books. I felt (and still feel) distinctly uncomfortable even watching people kiss.

And yet, for all that, I knew that I wanted a family (naturally, wanting children has nothing to do with orientation, and neither does someone’s fitness to be a parent). Which meant that I knew that someday I’d end up with a man, even if for a long time I was adamant that I could still adopt, and avoid the whole icky kissing-and-more thing. The thought that maybe I didn’t have to? That it wasn’t an inevitability? That wasn’t on the table. I went to an exceedingly hetero-normative school, and in those pre-internet days, there was no one to tell me that what I was feeling was normal, or that there were others like me.

For years I was the odd one out; the only one who really didn’t understand the point of boy bands (I still don’t understand the fascination with manufactured pop groups, btw), or who didn’t have a crush on an actor. Instead, I told myself that clearly this crush or infatuation stage was just something I’d skipped somehow, and boy, wasn’t I lucky? After all, adults didn’t go all gooey over boys or men (or women) the way my classmates did, right?

Yeah, wrong. I think I managed to miss the fact that I was deluding myself by reading over and over accounts of people who fell in love through adversity, or over time. I wanted a partner – and in my head, I always made that distinction of “partner” over “boyfriend” – and that was just what fantasy novels offered. Relationships built on friendship and trust, with any physical affection nudged to the background or off-page. When I finally entered a relationship, I had no idea that I wasn’t experiencing sexual attraction because I had no idea what it even was. It’s not as though we live in a world which encourages women to be open and honest about their sexuality, after all.

The first time I encountered the term “asexual” was in the webcomic Girls With Slingshots. I was…perhaps 25? It didn’t register, because the asexual character in the comic did not engage in sexual activities, whereas I fluctuate between indifferent and favourable. (For those unfamiliar with the terminology, this describes my willingness to engage in sexual activities myself, and not my view of sex in general. I am also sex-positive, in that I believe people should have as much – or little – sex as they want, without being shamed by anyone.) I had been surrounded by a hetero-normative society for so long that I was unable to divorce the concept of sexual attraction (and acting on it) from love. It has taken me the last two years to unpack that, and to grow into a space where I feel comfortable to state that I am Asexual, with a capital A. I arrived via the label of Demisexual, because for a while I was unable to accept that the attraction I feel/have felt (to only a very few people throughout my life, it has to be said) was romantic and sensual, not sexual. It was a huge shift to really think about what I was experiencing, and not try and make myself conform to what society told me I should feel.

Nowadays, the more I look back on my teenage self, the more obvious it is. I start to wonder how I ever missed it; from writing a fantasy series about a reproductively asexual race of people (so I didn’t have to include romance, because that inevitably led to kissing); to my conviction that I wanted someone to sit quietly with and talk to for a partner; to my squishes on classmates which I knew couldn’t be crushes because I never wanted to kiss anyone; to my utter blindness to anyone flirting with me up to and including the point where I went on a date without realising that the other person wanted to kiss me until they actually kissed me.

And the common thread through all of it, the one single, solitary thing I wish I had known through it all? That hey, it was okay. There was nothing wrong with not wanting to have a relationship, and I didn’t need an excuse like “I’m too busy writing”, or “I’m just awkward”. I’m not awkward at all. I’m just not sexually attracted to people, and after almost a lifetime of teaching myself to pass as straight so that I didn’t seem so odd, I’m a little muddled up inside still. For example, I have a tendency to point out innuendos all the time simply because for years I never saw them and was the butt of jokes in that regard. Now I over-compensate.

Another, less healthy example, is the fact that I had huge self-worth issues as a teen because guys only seemed to notice my breasts, and people would compliment my hair, and I didn’t see the purpose of either of these types of comment. I have moderately large breasts – did that mean people were only interested in those, and my value in their eyes derived from my appearance? I have shiny, thick hair – did that mean other women would judge me based on how my hair looked? I had no measure of what was “attractive”. I still don’t, really. I judge my appearance based on how society tells me a woman should look, because I had to learn what “sexy” meant from books and television. I don’t have a metric for what attractive is. I look at myself and I see….a body. I look at other people and I see…also bodies. It’s something humanity as a whole has in common; isn’t that great! But beyond that? Nope, not a clue.

I’m rambling now, because frankly, there is so much I could say on this subject that I’m pretty sure I could write a book. Honestly though, the one thing I come back to time and again is the wish, the passionate wish, that somehow I had learnt about all this sooner. That I hadn’t spent my entire teens and a chunk of my adult life feeling that I must be strange or weird because there was something out there which other people all seemed to understand and which I didn’t. And now, here’s a week about awareness, and I can take a step to make that wish come true for someone else. I can be visible for another teenager who feels kinda weird and different and out of the loop with all the kissing nonsense going on around them. I can stand up and say “THIS IS REAL. YOU ARE NOT BROKEN.”

I am not broken. I am not wrong. I’m just asexual. And I’m not alone, either.

Mirror Image

You know, I’ve always had this weird obsession with reflections. That’s possibly overstating the matter, really, but I can remember reading Through the Looking Glass at a young age, and the whole concept really resonating with me. Everything being reversed. That disorienting sensation where things are on the wrong side. For years I’ve looked at reflections – in mirrors, windows, puddles – and imagined a mirror world, where everything is the other way round. Back to front.

Which is a neat sort of image to open with really, because it turns out (to my own surprise) that today is International Letfthanders’ Day. I wasn’t aware that it was a Thing, but hey. It is! Unite, my fellow lefties!

Most likely, the connection doesn’t make sense at first. But really, the more I think about it, the more I see how linked those two thoughts are. Being left handed in a world where more than 90% of the population isn’t, you quickly learn to adapt. Some with greater ease than others, to be sure, but you do work things out. You manage. Maybe you never even consciously think about it most of the time, because that’s just how things have always been. It’s still there though.

I will admit, I did roll my eyes when the Lefthanders’ Day thing popped up. Because… it’s just a hand, you know? I don’t usually see a big deal in it. Most people use their right hand, I use my left. No problem. And then I started thinking, and looking back over my childhood (always a dangerous pasttime, that), and I realised that no, maybe there is something in this after all.

Being left handed is a lifetime of micro strategising. It’s adapting to a world which was made for people who work the other way around. It is, when you get right down to it, like growing up in the mirror world. Where everyone reaches for something on the opposite side to you. Where you need that extra second to go: “Oh, no, the handle/pen/mouse is on the other side.”

Of course, being an adult, that’s mostly instinctive. Being an adult in my own home it’s also mostly unnecessary. I leave my kettle with the handle on the left. I own left handed scissors and vegetable peelers, and a tin opener which works for both hands. The rest I learnt to deal with years ago.

It’s childhood really, where it can be a problem. Which, if you look at the Wikipedia page for International Lefthanders’ Day, is  sort of the purpose of having a Day (with all the emphasis of capitalisation that it implies) in the first place.

Because when I look back on my childhood, there’s that little undercurrent all the way through. It’s the green and yellow handled scissors which were always blunt, because there were so few lefties to use them that they never got replaced. (I learnt to use right handed scissors in my left hand – other solutions include really sucking at using scissors until you get proper ones, or just using your right hand to cut with.) It’s the moment when everyone else in year four was writing with a pen, and I was told I couldn’t because I made a horrific smudgey mess of everything I wrote – if you’re left handed, writing left-to-right is a bit of a bother. I can remember very clearly – even twenty years on, nearabout – the day that someone told me to turn the paper so that I wrote towards myself instead of horizontally. It was a revelation. It was a chance to not be the Odd One Out. To not be held back because teachers just didn’t have any practical advice for someone not being the same as the rest of the students.

Plus this is so damn comfy, you know?

Seriously. A revelation. Revolution, even, if I’m feeling Punny.

I mean, it’s pretty sad, in a way. Because I can recognise that it’s not a big deal. We’re not talking serious, life-changing stuff here. And yet I remember that. I remember feeling different, just because of the hand I use. I remember sitting in lessons and having problems because I would knock into the elbow of the person next to me if I wasn’t careful. If I didn’t sit on the left. I remember that frustrating moment where I picked up a peeler and I couldn’t use the damn thing because the blade was on the wrong side. I remember my frustration with the brief, short stint I had learning the piano because my right hand just wouldn’t do the fiddly bits. I remember PE lessons where I was just plain backwards to everyone else. Holding the bat or the racket in the wrong damn hand.

I remember going into hospital for problems in my teens, and having a cannula put in my left wrist, and feeling completely helpless because suddenly I couldn’t move it properly, and there went my ability to do pretty much anything. I’m a writer, and could no longer put pen to paper. It was hell. (These days I make a point of getting them to put it on the right side. That there is a “these days” for that statement is something of a bugbear of mine, but never mind.)

And I remember the jokes. The stupid, irritating jokes. Not often enough for me to class them as anything other than an irritation, but there, all the same. The implication that being a leftie is weird. That I’m awkward. That I’m clumsy. The constant “bad handwriting” association. The weird looks when I pick up knives and apparently “just look awkward”. To be honest, the fact that it’s anything to comment on at all, outside of making adjustments for it. Why does it matter?

Because, you know, kids aren’t stupid. I mean, you tell a child often enough that they’re different, and they’re not just going to gloss over that fact. When you make a fuss about a child who smudges their writing and don’t offer a solution, you can’t just expect them to be okay with that. I had years of feeling self-conscious about my handwriting. To the point where I would apologise for it before anyone even saw it. To the point where, these days, I have this compulsion to show my handwriting to people just so they can comment on the fact that it’s tiny, not scruffy. To get that validation that I overcame the problem. It’s a minor insecurity which never went away.

And I’ll be honest, I’m not even that left handed. In some respects, yeah, I am. I do most stuff with my left hand. But I don’t have a different setup for my computer – I use a mouse in my right hand. (I type slightly weirdly though because my left hand does most of the work.) I eat “right-handedly”, whatever that means, and I can use my right hand for stuff when needed. I have a degree of ambidexterity. There are plenty of people out there who struggle to adapt as well as I can. Who need to change keybindings on their computer to make things work. Who really need left handed scissors, instead of liking them. Who grow up feeling short-changed because they were born on the wrong side of the mirror, and everything is back to front – and instead of helping, people just make idle jokes associating lefthandedness with clumsiness or being “wrong” in some way. “Cackhanded” is one of my least favourite words, for that exact reason. (I also super hate “southpaw” but I accept that’s a personal bugbear and lots of other people like the word. For me it’s like a tic. I hear it, and I want to thump someone. I have a HAND. I do not – and am not – a fucking PAW.)

I guess the point I’m trying to make is this. Left handedness isn’t something I really think about until I’m reminded of it – and then the floodgates open and I realise just how many things irritate me on a near-daily basis which I’m so used to tuning out that I seldom think of it. It’s cash points having the Chip and PIN reader on the right hand side, so I have to stretch to do it (that was worse when cards still had signatures, btw. Super fucking annoying trying to fit in the awkwardly-placed gap). It’s those study chairs at colleges and in sixth forms having the desk attachment on the right arm (although the 90 degrees trick for handwriting helps there). It’s so-called ergonomically designed utensils being shaped so as to be nigh unusable. It’s the oven controls being placed in such a way that I have to stop myself reaching over the hob in order to turn the temperature down. It’s every till I ever used while working in retail being geared for right handers.

It’s teenage me getting flack from the teachers when I cut my left hand on a glass bowl and they didn’t believe that I was unable to write my homework. Because hey, it was my left hand. (Not even joking about that one. I went in with my hand bandaged and the response was “use your right hand”. To take notes. In a GCSE History lesson. Yes I am still bitter. No, I wasn’t able to take notes.)

I am a leftie who spawned another leftie. So some of these issues I’m starting to see from the other side, too. I see my daughter writing with a super awkward grip on her pencil. I see her struggling with scissors (I made sure to buy a leftie pair so she had some with blades that actually cut). I can already foresee future hurdles as she moves outside of my leftie-friendly home into a mirror world which really doesn’t give a lot of allowance at times. I wonder if I should present her with the same challenges I had, so that she learns to adapt young. In a sense, she already has – my right handed computer setup means that she, like me, will grow up able to use regular computers without issue.

There’s a correlation between left handedness and creativity. I think the general public assumption is that it’s genetic, but really, I think it’s as much growing up in the mirror world as anything. It’s a lifetime’s experience finding solutions to the problem of everything being back-to-front. A childhood adapting to the almost limitless minor inconveniences of the world around. Of the locks on every single locker being on the right hand side of the door. Of fumbling your own way to writing legibly. Of manhandling implements so that they work backwards. Of being super glad to live in the UK when you learn to drive because ha! At last, something which seems tailor made to me! (And then not being able to drive any more, but oh well.)

So, ultimately, on International Lefthanders’ Day, I want to stand up and gesticulate wildly. Not so much to celebrate the fact that I’m different (although at one time I did pretty much do that about being a leftie), or to make out that I’m super hard done by (although, again, I was a teenager, so I had that phase about leftiehood too). It’s more just… if you know someone left handed – particularly a child – maybe take a minute to appreciate that all those little obstacles do add up. They’re small hurdles, but they can have an effect. A lifetime of hopping over them adds up to a lot of extra energy spent. And maybe there are some hurdles which don’t need to be there.

My daughter is not the only leftie in the class. There’s a stupid number of them in her year group. Nine in one class, eleven in the other. It’s amazing. She won’t spend her primary years being the odd one out. And that’s good. But that’s also not the case in every school. Not every child is in such good company, and sadly, some children are subject to bullying or put-downs because of it. To struggling because of illegible handwriting. To finding it hard to use scissors or computers (ever important in our technological age). Is that really how things ought to be, in this day and age? Should we be letting children grow up being othered just because of the hand they use? It’s all rather Lilliputian, to my mind. Surely we can make the world a more adaptable place. For everyone.

The Subtle Art of the Request.

For those of you who don’t know, I have a fanfiction account. It was neglected for a long time, and then I got this idea, and I had to write it, and then one thing led to another and now I am in the middle of another story, which is over 50k long and shows no sign of winding to a close any time soon (I mean, in terms of story, we’re about to get into the real plotty part).

But anyway. I digress.

Fanfiction.net has been an experience. Mostly a good one, I have to say, although that could be because I’m hanging out in a fandom which seems to have a core of really good writers, and not so many of the sort of fic where you read it and then go grab the eyebleach. While reading (too many) fics recently, I have noticed that some are written as commissions, or as requests, or in response to prompts. I though it was interesting, but ultimately didn’t really pay it that much attention.

And then last night, someone sent me a PM requesting that I write a fic. And I was hugely flattered, because I literally have three fics on the site and two of them are 5k and under, and holy shit SOMEONE IS PAYING ME ATTENTION! FEED MY WRITERLY EGO, PEON! So I replied, and said, well, depending on what it is, I don’t see why not. And I asked what they wanted me to write, including the disclaimer that hey, I will readily agree that I don’t have so much writing time at the moment.

What did they request, you ask? An AU version of the first series of Digimon Adventure. Now. This made me pause a moment. A very “what the fuck?” moment. But, you know, I’m new to all this requesting stuff, and maybe I just misunderstood, right? So I tap out a message asking if they mean the whole series, or just, say, a specific part of it.

They want the WHOLE DAMN SERIES.

Here’s the thing.

This person has not been rude. They’ve not been especially polite either (we’re talking a bare minimum of words in the PMs), but they’re just asking. They’re not demanding or anything like that. It’s a question, not “urh, you have to do this or you suck”.

But.

It really makes me think about how much people take for granted. I mean, this person who knows nothing about me save for the little bio on my about page, has requested that I spend I don’t even know how long writing a fic about an entire, 54-episode anime series. Based on, presumably, one (unfinished!) fic that I’ve been writing.

Sure, you can argue that it’s a great compliment. That hey, I enjoy writing anyway and it’s not like I have to say yes. The fact is, as it happened I had an idea lurking in the back of my mind that the prompt sparked a little anyway, so you could even make the argument that it’s something I would probably have written at some point even without the request.

But really, if I write that fic. If I write an AU version of the entire first series of Digimon, that’s the work of hundreds of hours. For a fanfiction which I can’t really benefit from save for a “yay me” if people leave positive feedback.

Don’t get me wrong here, I am currently writing a hella long fic for the fun of it, which I have never expected to get anything for. I don’t mind writing for no gain. I love writing. But I remain very uncomfortable with the attitude that allows someone to ask a person they don’t even know – with no preamble – to make that kind of commitment to something. For nothing.

I mean, just… this is the commissioning/fic request equivalent of bumping into someone on the street and going down on one knee there and then. There’s nothing wrong with proposing. There’s nothing wrong with requesting a fic. But you know, there’s a teensy bit of interaction which reeeeally should happen first. With the proper context, everything is hunky dory.

Without it, at best you come off as a bit of a twat. At worst, you’re going to make people feel really awkward and uncomfortable. Either way, it’s fucking rude, peeps. Let’s not do this thing, yeah? CONTEXT. CONTEXT IS GOOD.

In Dependence

If there is one thing about me that close family and friends can affirm, it is that I am stubborn to the point of bloody-mindedness at times. We’re not just talking a little bit stubborn, we’re talking full on, cut-your-nose-off-to-spite-your-face levels of the stuff.

And one of the things I am stubborn about is not needing help.

Of course, there’s no escaping the fact that over the course of my life I have needed a lot of help, in a lot of different ways, but then, that’s one of the reasons I hate it. Because I am someone who hates relying on other people, who hates to be incapable of doing things.

And yet, here I am, edging out of the mid-twenties and into the late, and I still, regularly, am utterly incapable of doing some things for myself.

Driving. There’s one. I had my lovely pink license for all of ten months before it was taken away again with the promise that I could have it back if I was good and stopped having seizures. Well, here I am, eight years later and in that time the longest I’ve gone without a fit is one month. It was probably a February.

Baths are another one. Seems kinda silly perhaps, but if I want to have a bath, I need someone else around, to check on me. As a result, in the last year I have had one bath, and that was me taking a risk. In my flat there is only a shower, to avoid temptation.

Cooking, too, is an area in which I sometimes come unstuck. If a seizure strikes at 4pm the oven doesn’t even go one, and one of the emergency ready meals in my freezer acts as stand-in. I’ve thrown away unopened packets of meat because they went off the day after I had planned to eat them and on that day I was unable to cook them. Likewise, there’s always at least one onion in the bag when it gets slung out, because I buy as though I am capable of cooking them more often than I actually manage.

The elephant in the room of course, is what I turn into while I am having a seizure. Perhaps surprisingly, given the post history of this blog, it’s not something I talk about a lot on a day-to-day basis.  When I do, it tends towards evasion and sidestepping. “Oh, I manage,” or “The children are really good about it actually,” or “I just got used to it really.” We make do. We manage because we have to. I don’t need help.

Except, when the seizures start, when my knees buckle beneath me and I fall down, pretty much the only ability I retain is to more or less keep myself from spilling out of my clothes. (Seriously, the number one thought and motivation if I have a seizure in public is “I will not let anyone see my bra”. Any control I keep over my arms and legs gets spent on that. It mostly works.)
There is no walking, there is no talking. There isn’t always seeing. I am fully dependent on those around me to keep me safe, to protect me – usually from myself. It doesn’t matter that I am a fiercely stubborn person, the kind of person who will carry shopping so heavy that it wrenches my shoulders and refuse to let anyone help me. That I will sit and struggle with something alone rather than admit that I maybe don’t know what I’m doing and need advice. When I have a seizure, any and all agency is stripped away.
It would be poetic, perhaps, to say that my stubborn insistence on doing things myself came about as a result of that dependence. I mean, it would also be a lie, but it would be the kind which sounds good. In all honesty though, I am the student who rubbed out the pencil notes in her English GCSE set texts that had been left there by previous year groups, because I hadn’t written them, so using them would be cheating.  Where other people work together to solve problems, I hide myself away and refuse to talk about them until I have worked it out by myself, usually meaning that it takes me ten times longer.
This, then, is the true cost of epilepsy, of seizures. I don’t count it in bruises, or in hours lost (although they would also give a fairly impressive tally). I’ll talk all day about the physical toll with no worries in the world. I can handle that. I can fall down, and get up again and dust myself off and have a bit of a laugh. It’s an inconvenience, certainly. It bloody well hurts sometimes, too.
But a cost isn’t something you joke about. It isn’t the running gag. It’s the thing you hold close to your heart, safe from the sight of others, and also, incidentally, right where it can sit and sear through your emotional defences.  Epilepsy means something different to everyone. And for me, at its core, it means depencence. It means, on some level, I rely on other people to live, and there’s a good chance I always will. That’s the cost. I carry it with me everywhere. The knowledge is a ball of fire, and it burns.

Christmas concerts have changed.

So, today was my son’s Christmas Carol Concert. Now that he’s in year 1, and no longer in the semi-partitioned world of Foundation, he gets to participate with the rest of the school. I’m writing this, feeling like I’ve crossed over the threshold into the mythical world of the “School mum”. As though last year and the weeks of this one so far didn’t count.

Still, this is the first time I have felt compelled to write about something specifically and only relating to my children on here. So maybe that is a rite of passage of sorts.

You see, I was a little sceptical about the children having only a “carol concert”, and no nativity once they were out of Foundation. I’m no practising Christian – I’m thoroughly agnostic with a logical leaning for much of the time, but I guess I can be pretty traditional about some things. And there’s something nice, isn’t there, about trotting out to see your precious child say nothing at all in the school play while the children of the more prominent PTA members get to be Mary and Joseph. (The highlight of my Nativity experience was being a rag doll in Santa’s workshop, captured for milliseconds on gloriously blurry VHS.)

That was how it was done, right? When I was at school, costumes were home-made and nigh unrecognisable. You sang Away in a Manger tonelessly and raggedly, while the teacher who could play the piano trotted out her repertoire on an upright which was only a little out of tune. And there was a good chance the parents could understand at least one word in three of Silent Night.

This year, I sat near the back of a hall at the neighbouring secondary school, watching my son stand with his year group singing a song about Christmas crackers, after which they marched off the stage to let the next year on. There was no piano – instead, a very polished CD was played which the children sang along to, and tried to be as loud as the rather more in-tune children’s choir it featured. It was a lot more slick and jazzy, but somehow, I couldn’t help feeling as though something had been missed.

The only year group which do a Nativity at my son’s school are Foundation. Well, last year the Boy was sick on the day we were to go and see it, so I was unable to see his performance as a “Non-talking Shepherd”, and it looks as though that was my only shot. maybe it’s just my bitterness at missing his one and only Nativity, but I can’t help feeling that sitting children in rows so they can sing along to a bunch of other (no doubt older) children singing better than they can is slightly missing the point.

I don’t go to a primary school carol concert looking for polish and quality. I go to see my son, and as much as it might make me a bad person, I don’t care about the other five years, all singing in turn. Or even watching 360 children standing in a group singing a song I have heard a rather more flat version of at home for the last fortnight. Especially when I know that I’m not hearing him anyway. I’m listening to a CD, played out on speakers because 360 children means a whole lot of parents and the borrowing of a secondary school’s hall to accomodate them.

Call me old-fashioned, but I think I would have preferred what my parents got. An out of tune piano and a rag-tag of children who sing their off-key hearts out, missing or forgetting words and generally sounding like what they are. Children. Our children.

When did it become the done thing to replace their (let’s be honest, not very good) singing with the singing of some other people’s children?

Guilt

I don’t like thinking of myself as disabled. I try not to, as far as possible. So the times where it’s unavoidable prickle all the more. I don’t like the fact that, some days, I have to go and have a lie down just four hours after getting up because I’m having an aura and bed’s the safest place.

I don’t like the fact that M misses out on going to groups, just as O often did. I don’t like the fact that I often injure myself while shaking and thrashing (I had a nice red mark on my forearm the other day). I hate (with a fiery passion) the fact that W spends his days watching me for the moment when I start acting differently.

I can live with the seizures. Well, I have to. No one’s found a way to make them stop yet, and even the CBT guy said they couldn’t guarantee it would put an end to them, only that it was very likely to help. I can even live with occasionally beating myself up; pulling my own hair, scratching myself, throwing limbs into furniture, you know. I managed to wrench my arm yesterday, which was a new one. For one brief, painful moment it felt like I was dislocating my shoulder. I tell you what, that really hurt.

Still, it’s not a lingering thing, like the guilt. Guilt’s a funny old thing really. Rationally – of course – I know it’s not my fault and that there’s no need for it, but then rationality doesn’t really feature much in any human emotions. When my seizures affect W, O, or M directly, I feel guilty.

It was one of those brief windows in which I was alone with O that I feel most guilty about at the moment. I started having a seizure. W was upstairs with M, and it came on fast enough that I couldn’t call up. I staggered over to the sofa and slumped onto it. I think my arm fell over my face a little. I could see, but not very well. Now, the amount of time this took is still very hazy, but I do know that for a while, O didn’t notice. The TV was on, he’s normal child, of course he didn’t.

When he did, he came over, and I think he told me to get up. He told me something, at least, and of course, I couldn’t reply. I remember him peering at me, looking into the gap I could see out of, and frowning. Then he said, quite casually, I must add: “Maybe she’s dead.” He repeated his opinion that I was dead a few times, with different variations. I can’t remember it particularly clearly, but I do recall that at one point he remarked that daddy would have to take me away and make me not dead any more. So I take comfort in the fact that his idea of “dead” and mine don’t match entirely. Eventually, he held my hand and sat in front of me. (Not the safest place for him to be, but I wasn’t able to tell him that.) I managed to squeeze his hand, much in the same way that I signal to W that I’m okay. I’m still not sure how much he understood, and how soon, but he did let go in the end, and after another effort in which I managed to point upwards, ran to the bottom of the stairs and called for W, saying that I was having a seizure.

Now, for a boy not yet four years old, I don’t think he did badly. In this situation the crap one was, let’s face it, me. I can see the funny side of it, of course. I mean, he didn’t at any point seem particularly traumatised by it. At one point, in a complete monotone, he said: “Oh no, she’s dead,” and promptly prodded me in the arm. (After all, what are dead people for?)

Still, much as I am comforted by the fact that he hasn’t been traumatised by it all, I really wish that sort of thing didn’t happen. Ever.