Fly-by offenders, disability thoughts, and everything going to hell in a handbasket

by Veronica on February 21, 2014

in Ehlers Danlos Syndrome, Evelyn, Headfuck, Seizures

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.


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.

Erica J February 21, 2014 at 5:16 pm

Yes, hello, I love you.
There is so much I relate to in this, even though our experiences are so different.
I’m off to shout it from the rooftops (well, social media) now!

beth February 21, 2014 at 7:11 pm

Don’t take other people’s bullshit on board. Here’s something that I don’t think a lot of disabled people realise, and please excuse me if this is in any way offensive, but everyone gets nasty comments from strangers. Everyone is made to feel like they’re not doing the right thing, not good enough, should be doing something else etc etc. Some people get more than others, for all sorts of reasons, but the lesson is the same: don’t take other people’s bullshit on board. They don’t know your life or what challenges you face. They don’t know YOU. The only expert on your life is YOU.

On a different note – I dislocated by knee last year. It was one of the most painful, debilitating, drawn out experiences I’ve had. I do NOT want it to happen again. I can’t even imagine what you and your children go through daily, and I’m really sorry that you have to endure it. I think you’re incredibly brave and upbeat just managing your own life, let alone raising two wee kids. You might not feel brave and upbeat, but I admire you anyway 🙂

Krista Petrauskas February 21, 2014 at 8:23 pm

I can relate to a lot in this post. I think you are pretty amazing.
In my case, having a chronic, and mixed, disabling, sleep disorder, and other issues.
I understand what you are saying about perceptions about disability and visibility – and invisibility
I can relate to what you say about days that continually change, according to one’s medical status, and life in the irregular.
I also think the distinction you make about one’s condition being a fact, and something out of your cause, and control is an important realization to have.
In my case, I felt guilty and a fraud because I couldn’t, and can’t experience my disorder, only the effects of it, and the effects of the insomnia component of it.
The fire in your belly is fierce, and your writing staunchly powerful
Your honesty about your life, and reflective responses, insight and courage really help others, I find these qualities that come out in your writing help me. Thank you.
What I hope is that medical science catches up and helps out, you and your children.
Meanwhile, grace in acceptance is something I am learning, still.

tiff February 21, 2014 at 8:39 pm


The working world doesn’t support mothers with chronically ill, often hospitalised children either but you know, I’m a lazy cow choosing to stay with my daughter through her illness, rather than go to work.

guest February 22, 2014 at 7:51 am

Youtube is the home of the grossly offensive troll. It’s nearly obligatory for everyone to be attacked by one of them at some point. Please don’t think about this nasty person’s pathetic words ever again. If you could see their life you would probably genuinely pity them.

Happy Elf Mom February 22, 2014 at 10:33 am

I do have to wonder if half the difficulty with having a disability that varies by the day are the ignorant and/or trollish comments. It makes for an interesting blog post, but also makes things very very isolating. I just felt like smacking your troll, reading this. :/

beth February 22, 2014 at 12:56 pm

Veronica, are you OK?

Veronica February 22, 2014 at 3:32 pm

Always 🙂

beth February 22, 2014 at 6:06 pm

good stuff 🙂

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