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.