Headfuck

In my barely checked gmail account the other day, I discovered someone had commented on a Youtube video of mine. It was vaguely offensive, and made me do a double take, before I removed the video.

Backstory: When Evelyn was small and having regular myoclonic episodes, I videoed them and put them on Youtube so her medical teams across the country had access to them. Mostly they didn’t get any views, which was fine with me. Youtube was only ever a tool, nothing more.

Many many EEGs and blood tests later, doctors determined they didn’t know what was going on, or what was causing the twitching. It was labelled benign because after a large plateau, Evelyn developed normally (mostly). Benign is good. We love benign.

I watched the video of her twitching again, and felt sick. She still twitches regularly, often waking herself up overnight with the jerking. We don’t think it’s causing any damage, and we can’t do anything to prevent them, so mostly we ignore it. A serial Youtube commenter with a plethora of offensive comments to her name (all on videos of babies, most with disabilities of some kind) made me rethink keeping Eve’s videos up.

I’m all for education, but what was I showcasing? Nothing anyone could explain. And the commenter was right, when you didn’t take into account the frequency and violence of Evelyn’s myoclonic episodes, they did just look like slightly pronounced baby movements.

But hey, KARMA was totes gonna get me and by worrying about my baby, I was going to CAUSE things to go wrong with her. Because KARMA. Because how dare I call seizures, seizures? KARMA.

Ugh.

For the record, non-epileptic seizures are still considered seizures. Just, FYI. They’re not damaging, but they’re still seizures.

I don’t know where I’m going with this, except I was surprised an ignorant comment from a fly-by youtuber annoyed me so much. Like she was doubting my experiences with my baby. Like I was making it up for attention and because she felt that way, I deserved worse things to happen to my baby.

It’s strange, isn’t it? How we make snap judgements and wish for an almighty something to smite people we think deserve it. Like karma is some kind of godwarrior war hammer being flung around in response to people doing something we disagree with.

In any case, Eve’s issues are not a result of karma, and my talking about them or not talking about them doesn’t change a thing. She still has the issues she has, and nothing anyone on the Internet says, or thinks about me will change that.

I watched her knee dislocate earlier, as she ran across the house. One moment, running. The next, she was face planted in the carpet, looking like a stunned mullet. How did that happen? Suddenly BAM, floor.

Genetics, man. You can’t fuck with the genetic lottery. Karma doesn’t smite you, and genetics can’t be changed with a wish for someone to get their just desserts.

Evelyn has Ehlers Danlos Syndrome. She’s in good company, her siblings and I have EDS too.

I’ve been thinking a lot about ability and disability lately, about how wheelchairs are seen as the only form of disability, and there is an implication of paralysis if you’re in a wheelchair. I walk across my paddock, a little wobbly, a lot braced, and wonder how many years I have left to do this. How long until a wheelchair for the supermarket is a necessity? How long until sitting down becomes easier than forcing one more step? How long until my disability is visible?

And if you’re in a wheelchair, can you also push your daughter in a wheelchair?

There have been multiple attacks on the disabled lately. It’s hard enough to be disabled you know, without someone also calling you benefit scrounging scum and implying you’re a drain on society. I’m not in a wheelchair yet, so how dare I call myself disabled? How dare I think about the disability path for my children, who can run and jump and land flat on their faces when their joints collapse.

I can write on the Internet, so clearly I’m not disabled. I’m just poor, and too stupid to go out and get a proper job, when I could be contributing to society. (Kill me now)

Disability is a multifaceted thing. My personal brand of broken involves lots of laying down. Dunno about you, but I haven’t heard of a 9-5 job that allows you to work from bed, prostitution notwithstanding and my joints aren’t stable enough for regular sex, let alone the acrobatic kind. I can do plenty of things, but leaving the house every day isn’t one of those things. It doesn’t matter much, I can’t do handstands or cartwheels any more and my life doesn’t seem to be any lesser for that.

Contrary to popular belief, a lot of disabled people can’t work because the standard workforce isn’t equipped to deal with us. When your brand of disability is something which changes in severity every day, you can’t commit to a regular cycle. My last job failed because I kept having to run to the toilet to puke from exhaustion. This was 8 years ago.

So I’m limited to writing, and arm-chair activism. Which is really from-bed activism, where I thank the godwarriors for my laptop, internet and karma.

I haven’t spoken about EDS lately, because frankly it’s boring. I live with it, I don’t also want to have to write about it every day. I have to face it every time I take anti-nausea pills so I can function through the day, knowing damn well they’ll probably cause Parkinson’s down the track. But these are the choices you make, for yourself, for your children. You borrow against tomorrow so you can survive today.

The karma hammer didn’t fall on me. Ehlers Danlos isn’t some cosmic punishment for something someone did in the past. It’s just something that is. Something we live with.

And that’s okay.

But please, stop making me feel like crap for things which are outside of my control. I didn’t choose to be broken, the same as I didn’t choose my hair colour, or my shoe size, or how well I can see.

It’s the genetic lottery, and everyone gets dealt a different hand.

The least you can do is accept it with grace.

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In the middle of a small town, stories die

by Veronica on February 14, 2014

in Headfuck

Last week Nathan and I were talking after school.

“I feel like they’re judging me, judging us, because of your blog.” Nathan said, out of nowhere.

I was stunned. Three years after I got any real publicity here, surely they’ve all forgotten I write on the Internet?

We talked about it and I’ll admit, I was defensive. I’ve been defending this blog as long as I’ve had it – not from Nathan, who understands my perpetual need to tell stories, but from everyone else.

But why would you put your children on the Internet?

How can you tell strangers that?

Isn’t it weird?

You’re weird.

Weird,

weird

weird.

The side-eye and the shifty glances, the subtle judgements.

I was feeling defensive. Yes, there are women who haven’t spoken to me since they discovered I had a blog, but honestly, did they expect me to stop writing because of their judgements?

Maybe they did.

Maybe I did.

I stopped writing as much, exposed and naked as I was here, the all seeing eye of the Parents and Friends association falling on me. My trust issues, anxiety issues making it into a bigger deal than it might have been.

I stopped telling my stories.

Amy grew up. She started school, grew wings, made friends. I stopped writing about her, and maybe that was my mistake. By refusing to share stories of her, I’ve stopped talking about her all together. My amazing, spirited, independent daughter.

I emailed the school yesterday to see if the referral I signed for Amy to see the school psychologist is still current. She needs assessing, with more help than I can give. We suspect dyslexia, but who knows what is going on inside her mind? She’s stopped eating enough at school, the food shaming body police getting inside her head.

“I just don’t want to eat too much Mum.”

“But why? What is too much?

She shrugs, unsure of how to tell me what she means. Maybe unsure of what she means. She’s internalised the God of Skinny and I worry about her as she picks her way through dinner two hours after we’ve finished eating.

I shouldn’t talk about her – I should leave it to others to make up their own mind about my brilliant daughter, without the taint of my opinion clouding their judgement. Without labels hanging over her head like rain-clouds, floating soft and silver and ever present.

But there’s dyslexia and my ever growing disillusionment about the messages they’re sending in school about health and healthy.

Children cannot live on carrot sticks alone, but oh how they can try.

I grew up in this community, and the slurs I internalised still whisper in my ears. A gloating child insisting my father wasn’t my real father because my parents hadn’t been married when I was born. I was an illegitimate bastard, she took pains to point out.

Eight year olds don’t know what illegitimate means in relation to their school friends. Someone was talking outside of school, whispered conversations in kitchens, overheard and repeated back to me. Arrows to my heart.

They’re the ferals up the hill.

Never have any money.

Have you seen the way they dress?

I heard they eat roadkill.

Hey feral, do your parents feed you roadkill? What’s in your lunchbox feral? Why don’t you have new shoes?

Now my children go to school here and I wonder if the stain is fixed, under their skin somehow.

When you stop telling stories, even though your soul is filled to the brim with swirling words, something starts to die inside you. Round and round inside the goldfish bowl I go, more worried about what other people will think, rather than sticking to my own guns.

Slowly I slide off the radar and it’s safer this way, easier, warmer. Huddled in the bottom of the pool, not speaking out.

I can’t sustain it though. Not writing is harder than writing. Swallowing my stories down is harder than regurgitating them for you.

And let’s be clear, they are my stories. I have every right to tell my truth, as uncomfortable as you may find it.

I can see the judgey eyes swinging my way. How dare I poke things, how dare I lift the rug, talk about my childhood, talk about my children.

My mother warns me. “Nothing is private in a small town school. Remember that when you speak to the psychologist.

I know this.

How I know this.

Carved into my skin, a thousand million insults remind me of how this works, when privacy is not a thing. My scars make me tougher, my convictions make me stronger.

I tell stories, because that’s what I am. A storyteller.

And if that makes us pariahs in our community – well.

It’s not like I’m not used to it.

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When you’ve got a child who won’t eat, everyone is full of advice and admonitions that it’s all normal. Which it is, in 99% of cases. Toddlers are insane creatures who want to live on tina wafers and air, with the occasional cracker or chicken nugget thrown in.

But Evelyn’s issues aren’t like that.

After a huge amount of success with our new therapies, we were working on getting her to eat enough at each meal. Slowly, the amounts were increasing from one teaspoon through to 100g, through to 150g, four times a day. Sure, mealtimes required more planning, a certain amount of structure and we had things we did that worked – but she was eating. Albeit, only smooth purees, but who cares? Anything can be blended.

But a week ago, Evelyn had a pain reaction during swallowing. All our work making food a safe fun thing, and our high chair a safe place went out the window. Evelyn doesn’t trust food. All my promises of “this won’t hurt” doesn’t mean a thing when neither of us believe it.

We don’t know why sometimes swallowing hurts. If we knew, maybe we could fix it.

So. Evelyn hasn’t been eating anything. Our medical team know about it, and they’re as upset at the big refusals as I am. Or maybe not as much as I am, because they don’t live with her. But they know, and they’re working on a plan.

It’s hard to not worry about her, and harder still not to obsess over everything she puts in her mouth.

Spoon food makes her gag violently at the moment, and spit it out frantically.

It’s hard, and I don’t know where we go from here. Current advice is to not push food, not to make a big deal out of it, and hopefully she’ll cut out the spoon refusal within the next week or so.

Until then, she’s eaten half a mouthful of watermelon today, and chewed on a variety of things that she didn’t deign to swallow.

How dare we expect her to nourish herself.

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I was reading this article earlier, from the Journalists who travelled the path of asylum seekers, when Amy appeared over my shoulder, interested in the photo of the little girl curled on her father’s lap.

I explained a little about asylum seekers and why they were coming to Australia and how. Her face fell when I explained that our Government doesn’t allow asylum seekers entry to Australia any more.

“But they just want a better life Mum” she explained to me, “they should be allowed to come to Tasmania. It’s safe here!”

She thought about it for a little while, skipping away and going back to her drawings, before asking what she could do to help.

“Could I write a letter?”

“Of course.”

Amy's Letter to Tony Abbott

“To Tony Abbott,

Can you please stop sending people from other countries to Detention Centres. Can you please let them have a better life and future.

Please put a tick next to yes or no to Detention Centres.

Send this letter back to me.

From Amy

Age 7″

I read this week about the mother separated from her newborn son by bureaucracy and red tape. I read of asylum seekers who desperately want a new life here, in this, the Lucky Country, and I wonder what happened to our sense of shared humanity.

Where did we go so wrong.

What happened to us Australia?

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Venturing into the great outside

by Veronica on October 26, 2013

in Evelyn,Gotta Laugh,Headfuck

I’ve been hibernating since Evelyn was born. I know this, and accept it. It’s easier to stay home when you have a baby who requires naps and a certain amount of normality. But somewhere in the middle of hibernating, I stopped going anywhere except for necessary things. Hospital appointments. The supermarket. School.

Which is fine, it really is. I’ve been working a lot, and writing a lot, and that is all much easier when I’m at home.

But I’d underestimated how much sanity can be restored simply by leaving the house.

Evelyn had a neurology appointment yesterday afternoon. It was a Student Free Day, so Amy was home from school, and the original plan had been to have Frogpondsrock watch my children while Nathan and I headed to the appointment.

By 11am I was ready to eat my children. Just up and eat them. NOM. The two big ones woke Evelyn from her nap five minutes after she fell asleep, someone destroyed something and there was more screeching than I thought humanly possible.

I ran away. Convinced Mum to come and get me, and we left Nathan at home with the two big children, while I escaped to Kmart of all places. You know you’ve been hibernating for too long when Kmart feels like a luxury freedom resort. I didn’t even buy anything amazing. School shirts for Isaac to start Kindergarten with, a new belt after the dog chewed mine to pieces, a present for a birthday party we’re invited to, a helmet that actually fits Isaac.

Then Evelyn and I shared a hot chocolate and a toasted sandwich, and I realised that I hadn’t been anywhere for almost 18 months that didn’t involve pressure, or stress, or screeching banshee children.

It was nice, you know. Evelyn is (mostly) lovely to take out in public, and I can’t keep hiding at home. That’s the problem with working from home too, it’s easier to just stay home, because going out means you’re playing catch up on things you should have done at lunchtime, at midnight.

Neurology was happy with Evelyn, by the way. She has a theory that babies with severe sleep myoclonus (the twitching that aren’t seizures) are wired differently. Wired higher. She promised me that Evelyn is going to give me hell as she gets older.

I look forward to it.

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