Ehlers Danlos Syndrome

Recently I saw a callout for writers to come forward and express interest in doing some sponsored work on a variety of topics. One of those topics was disability, so I put my hand up.

Skimming through the comments briefly, I saw a number of support workers put their hands up to talk about disability as well and I immediately got shitty.

The thing is, unless you have a disability, or possibly are the parent of a severely disabled kid, you need to shut up. You aren’t the minority group being spoken about. Your job is merely to shut up and listen.

In the wake of the Federal changes to how the disability pension was going to be funded for young people, it seemed everyone had an opinion and they were willing to shout it from the rooftops.

Social workers came forward. Disability support workers. Centrelink workers. That nosy old gossip at the post office. EVERYONE had an opinion.

“I work with these people and really, this makes it so much harder for them.”

“I see these people every day and blah blech blah.”

“There are thousands of these people routing the system and it needs to stop!”

These people.

These people.

I am one of these people and it offends me when people who don’t know what disability is like decide to speak on my behalf. I have a voice and I can use it for myself, thanks.

It took a long time to come to terms with my disability. The knowledge that slowly my body will start to fail me more and more often is a bitter pill to swallow some days, but I’m one of the lucky ones – I get to put things in place now in order to make my life in five years easier. I have a degenerative condition, I know about it, and I have accepted that.

I am also the parent of disabled children. I know how hard it is sometimes to step back and let my children speak for themselves – but I am also living in a body very similar to theirs, so I can advocate from the first person perspective of knowing exactly what helps and what doesn’t. And when their experience is different to mine, I shut up and listen to them.

It’s the same across the board. We need to let people advocate for themselves and stop trying to shout over the top of them because for whatever reason, we believe we know better.

Here’s the thing: I am disabled. Not stupid. My joints don’t work, but my brain does.

Disability is a complex and nuanced thing. There are as many different experiences as there are diagnoses and so it’s important that we listen to the people who know what they’re talking about. As much as that social worker believes she understands how disabled people live, work, and think, unless she also has a disability, she can’t explain from anything except a second hand perspective. And as long as I can talk, I firmly FIRMLY believe that I get to talk for myself.

Activism is hard work and it often leaves me curled up in an exhausted ball resembling nothing so much as a soggy cardboard box. But eventually I have to stand up and point out that I am disabled and you don’t get to speak for me unless you are disabled too.

We have strong amazing voices in our disabled community. It’s important that everyone else shuts up and lets the people who know what they’re on about speak.

 

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It’s been 18 months since I was diagnosed with postnatal depression, and twelve months since my brain was stable enough to come off my antidepressants and begin coping again. But the process of depression, like a lot of things, is not linear, and I find myself slipping back into old thought patterns quite easily these days.

Worry over starting a business is part of it, of course – we’ve invested time and money into this venture and as the launch day sneaks closer (September 12!), my stress levels rise.

But it’s more than that I think – a series of little things really. The anti-disability sentiment hanging around the joint lately doesn’t help. When a good portion of society is screaming that you’re worthless, it’s easy to dwell on all the things you can’t do, rather than the things you can.

And if I hear one person say “There’s no such thing as can’t” in a smug self-congratulating way, I may just hunt you down and personally stab you with a chopstick repeatedly until you can’t move.

It’s a lot of things and it’s nothing. Nothing and everything.

I’ve got an appointment with my doctor next week, ostensibly to fill out the paperwork Centrelink has demanded in giant red letters, asking me to prove my (degenerative, incurable) disability hasn’t magically improved, but I will be discussing the possibility of remedicating at the same time.

At any point when I stop writing, or leaving the house, it’s usually when I know I need help. So I’m asking for it.

The process of reassessment for disability support is also a factor here of course. Having to prove, over and over again that you’re telling the truth, that you have a problem, that it’s real, that it causes your life to be impacted in ways they can’t understand – it’s stressful.

I knew this was coming. I’m under 35 (clearly disability is harder to catch if you’re young) and I’m exactly the person the government is targeting with their current hate campaign, but I thought we’d have a little more time before I had to jump through metaphorical hoops. After all, the budget legislation hasn’t even passed yet.

But no matter. I can’t change it, I can’t fix it and I can’t magically fix the genetics which made me who I am and therefore start ‘contributing to society’, so I may as well just suck it up.

It’s still a bitter pill to swallow, to be beholden to a bureaucrat who decides whether you starve or not.

Someone, quite snarkily, told me I was not my genetic condition and I laughed and laughed and laughed. Because I am. Because this disabling condition is as much a part of me as motherhood, or the love of books and writing, or the fact I have black hair and hazel eyes. It’s part of me, sunk deep, and it impacts every single choice I make every single day. I can’t just take it off and have a break every now and then – it’s ME. It IS who I am, and I find myself resentful that someone would assume I could just delete part of my own story to… I don’t know? Stop talking about it maybe? Stop making them uncomfortable with the fact that disability can strike anyone?

I don’t know, but I still stew over it occasionally. “You are not your genetic condition” like somehow, my experiences as a disabled woman don’t matter. Like somehow, my disability is “other” to my identity.

Clearly this is a complex issue for me and I’m still working through it in my own head, but telling me I am not my genetic condition is akin to telling me to just get over it. To just ignore it and be … someone? someone else?

I don’t know.

It’s so much more complicated that a simple throwaway line suggesting my disability is not integral to who I am.

There have been a number of deaths in the Ehlers Danlos community lately. No one I knew, but friends of friends and it’s impossible to not be touched even slightly by the knowledge that EDS kills.

I am lucky in that my subtype is unlikely to cause aneurysm and death, or organ rupture. Crippling pain and dislocations, sure, but my doctors and I are pretty sure I won’t die of EDS related complications.

Not everyone is so lucky.

In the meantime, I will continue to potter around the house, doing the bits I can do and napping when I’m done. I’ll deal with yet another series of complaints when I can’t attend family gatherings because I’m too exhausted. I’ll hug my children, read a book, make some soap.

And hopefully, the antidepressants will help me get my head in order again soon.

 

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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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Evelyn is sick. Not in a special snowflake “oh god my baby is SICK” way, but in a normal “every baby gets a bad cold” kind of way. Despite the snot and the two hours of inconsolable screaming last night, it all feels very normal. Eve is sick, and she’s acting like a sick baby and I am tired, and bored from walking around the house patting her on the back while she wails.

I’m even typing this from bed, while she drapes her small sad self across my tummy, snuffling and grumbling about the indignity of a spring cold.

Things have happened, things I haven’t written about because, turns out, having three children is a bit of work, and toddlers are more intense than I remember.

Evelyn learned to walk. Like, properly walk. She totters around the house all day, throwing herself at any furniture  available to catch her unbalanced form. She’ll drop down to a crawl for a few metres, before deciding that height beats speed any day, and clambering back to her feet. She’s wobbly, and her right knee needs strengthening, but she’s off and walking.

She says thank you (dug’nen) when you hand her things. It’s one of her few functional words and is probably one of the cutest things she’s done since the last cute thing she did.

We saw the geneticist and left with a diagnosis of Ehlers Danlos Syndrome. This was expected. It might be causing her feeding issues, it might not. We’re told to stick with pediasure and see how she does. As long as she doesn’t lose weight, we’re all good.

Life continues. I’m writing fiction, waiting for November and NaNoWriMo to start, growing a garden and just being.

It’s all very nice, and normal, and pleasant. Except for the snot. The snot and wailing isn’t pleasant.

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Two nights ago, I was feeding Evelyn at some godawful hour, when I felt the pitter patter of tiny feet scurry across my forehead. I reached up and grasped something with too many legs and way too much exoskeleton for my liking. With minimal freaking out because Evie was asleep on my chest, I grabbed the spider, flinging it across the room.

Or at least, that’s what I tried to do.

Instead of the spider flying across the room, I threw it onto the bare chest of my almost sleeping husband, making him do the spider dance in the dark.

It wasn’t my finest moment.

On the bright side, neither of us got bitten and in the light of day, it’s amusing me. Even if I am now checking my bedding for stray spiders more than is healthy.

I’ve been writing a lot of things lately.

At Ramp Up:

My Disabled Body, My Choice

Family photo 039

Although eugenics is widely condemned today, the practice of shaming disabled women for having babies continues.

Recently I was the victim of a comment implying that because I am disabled, I should not have had children. I’ll leave aside arguments like the fact that I also pay taxes, and instead focus on the implication that I should not have had children because I have a genetic mutation that causes issues with mobility. Read more.

At The Shake:

Perception is more important than reality.

A few months back, I set up a new account on twitter, in order to promote some of the genre fiction I’m writing under a pen name. It’s been a hard slog, but today I can let you know that my pen name has twelve followers. Thirteen if we count the one tumblr follower I have. Read More.

Breastfeeding and Supplemental Formula.

Two weeks ago I put my fourteen month old daughter on supplemental formula under the guidance of a Dietician working through the Royal Hobart Hospital.

I remember reading somewhere, back when I was pregnant with Evelyn still, that formula will not poison your child and breast milk will not make her fly. I chanted that as a litany in my head when, as a neonate in special care, she required formula through her NG tube as my milk came in. Read More.

What are you afraid of Mr Prime Minister?

Tony Abbott’s behaviour is not that of a man confident in his leadership, or his power. He’s been elected to the office of Prime Minister, but instead of grabbing the job with both hands and doing it for Australia, he’s been hiding away in an office, refusing to let the people of Australia see him have an opinion on anything. Read More.

How are you, Internet? Any spider stories to share?

 

 

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