My body is broken.

In the wake of ‘flu and forced inactivity.

by Veronica on October 8, 2016

in Ehlers Danlos Syndrome, My body is broken., Soapmaking

It was probably a good thing I had decided to take most of winter and early spring off, because the ‘flu that hit us nearly three weeks ago almost killed me and I was incredibly grateful to not be juggling markets, or cancelling engagements while dying in bed.

The downside of this is the slight twitchiness I get when I look at my (mostly) empty calendar for October, and start wondering how to motivate myself without deadline-panic looming.

Amy was sick for nearly two weeks straight, and as week three ends, she’s still very low energy. Isaac is still coughing up a storm while swearing black and blue that HE’S NOT SICK and I AM FINE, which is nice, but school goes back on Monday and I really don’t want to have them send him home because he’s full of HACKING DEATH COUGH.

Evelyn, surprisingly enough, didn’t get too unwell. It’s shocking and amazing and I am so so so grateful for the fact she merely ran a vague fever for 14 days straight and grizzled a lot, but kept eating and demanding TV programs and didn’t even need a little bit of extra medical care. SO GRATEFUL for no hospital admissions.

It’s no secret that I am disabled. It’s also no secret that I don’t talk about it much anymore, or that you can only see it if you know me well enough to get to see inside my clothing for the braces and the painkillers, and the very careful system I have in place allowing me to (mostly) run my business without too much drama.

This doesn’t stop the government demanding I provide them with all of my medical records within 14 days to prove that my genetic degenerative incurable condition hasn’t magically become curable, fixable, and not coded into my DNA. But hey, who the fuck am I to disagree with them? I’ll just go take up buckets of time at the doctors office while I explain to a locum – because my doctor for the last 27 years has just JUST retired – all of my issues and ask him very nicely to write me a report.

And it’s not so bad for me – I have access to my medical records, and a doctor who can see me within a week of asking. I have a nasty diagnosis which precludes me working, if working doesn’t involve a nap each afternoon, a carer to relocate joints and help me out of chairs, someone to lift everything heavy for me ever, and the ability to lay down with my feet in the air the moment my blood pressure goes screwy and I throw up. Luckily working for myself allows these things, even if I am a bit twitchy about a lack of markets and the need to Make All Of The Things coupled with No Energy To Make Anything.

Of course, everyone knows the best way for the government to fix a fiscal problem is to skim from the bottom of the pile. (Hahahaha, guys. GUYS. You think I wouldn’t work a real job with benefits and regular money if I fucking could? I WOULD. SO FAST.)

So that’s where we’re at. It’s a bit insanity-making to be honest. I had a full medical review done in July ’15, so to have to provide all new paperwork over again is a bit rich, and frankly it’s a waste of both spoons and medicare, but apparently disabled voices don’t count when we point this stuff out.

Hashtag stressed.

On the flip side, soapmaking is going well, if we don’t count the death flu induced recovery period. Soapmaking is kind of the perfect job for me – slow, steady, and doesn’t require too much standing (honestly, it’s basically all paperwork anyway).

Patchouli Musk

In any case, I have another month before the serious summer markets start again and I use every single spoon ever to get through the crazy three months, before I go mad with inactivity over winter again. Tassie markets are slightly unbalanced that way.

Feast or famine, baby.

But that’s me. How are you, Internet?

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You don’t get to speak for me

by Veronica on August 25, 2014

in Ehlers Danlos Syndrome, My body is broken.

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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Disability, depression and the invalidation of my lived experience.

by Veronica on July 9, 2014

in Ehlers Danlos Syndrome, Headfuck, My body is broken.

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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My disability does not define my worth.

by Veronica on June 7, 2014

in My body is broken.

Yesterday, standing out in the paddock with the two youngest children, I waited for the lovely Helen from ABC radio to come up and interview me about my disability, reproductive choices and quality of life.

At the same time, I kicked a ball to Evelyn and tried not to panic.

Something I thought was nobody’s business but ours has turned into a Thing, and frankly, I have a headache over it.

You see, what you are saying when you say we should not have had a third baby, is that people like me shouldn’t exist. That I am somehow worth less as a person because of my genetics. When you judge my children based on a small string of genetic code and find them wanting, you are telling them they are worth no more than their genetics.

How is that not eugenics? This idea of some people having less value to a society because of their genetic fitness.

It’s a slippery slope, and yes, I know, your situation is different. But that’s the thing – your situation may require different choices to mine. Your situation may be entirely different.

Different people decide different things about having children all the time.

This is not the pain olympics. Your situation does not define mine, nor mine yours.

Asking me to say I was irresponsible for bringing children in to this world is asking me to regret my choices, my children. I can’t do that. I will never do that.

It also implies that had we known about Ehlers Danlos Syndrome, my mother should have aborted me, and so on, back through our family line. Cleansed the world of a genetic fault before any one could ever “suffer”.

But I’m not “suffering”. I don’t find my existence to be one of suffering. I don’t sit here, waiting for my life to be done, wishing my mother had aborted me.

When everyone else sees me as merely the sum of my disability, a collection of “issues” that they would “hate to live with” and “I can’t even imagine how you live”, I am busy getting on with my life.

This is the body I was born in. I don’t spend time regretting my inability to run marathons. Instead I do all the things that make me happy. And maybe I am lucky – my interests align well with my abilities.

I spend time with my family. We play video games and laugh uproariously. We read books. I write things (lots of things). I make soap.

We’re happy.

Let me repeat that.

I am so happy with my life and the path I am on.

I don’t spend all day dwelling on how my joints work. Do you? Do you spend all day noticing how your ankles move? Or how your hair colour affects the way people speak to you? Or how you breathe? Or how your eye movements control what you see?

Of course you don’t.

We don’t spend every moment of every day aware of our bodies and the things we can and cannot do.

Why would you think I sit here in a pit of angst worrying about how I can’t weightlift? Or run?

Ridiculous.

I’d been loathe to write about this again, because hear this: What I decide to do with my uterus is none of your business. Not even a little bit. Not an ounce. You don’t get a say. If I decided to go and have another five babies, you still wouldn’t get a say.

My disability does not define my worth, nor does it define the worth of my family.

Remember that the next time you feel inclined to say something to me.

—

Comments are moderated on this post and all others from here on in. It’s not something I ever wanted to do, preferring instead to foster a group of commenters who were adult and able to agree or disagree with me without resorting to vitriol and assholery.

That’s changed now and I am controlling the conversation. If you feel the need to comment like a dick and it doesn’t add to the conversation, I will delete you, but not before mocking you on social media.

You can disagree with me. You can comment with an entirely different perspective and situation. You can talk about your own situation or your reaction to my situation all you like.

But you can’t attack me or my family personally, you can’t attack choices other commenters make and you can’t spread your vitriol around like manure on the garden.

 

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What does $7 buy? Hopelessness, despair and death.

by Veronica on May 15, 2014

in My body is broken., Soapbox

I am disabled.

Every few months I’ll have a run of good days and start to think wistfully about going to University and studying something I’m interested in. Or the disability bashing will get inside my head and I’ll start to question myself. Surely I could work a part time job, right?

Then something will happen. My body will collapse and I’ll spend three days vomiting, only managing to parent my children through the use of heavy duty anti-emetics which will probably cause Parkinsons when I’m 50. Or maybe I’ll dislocate something so badly I’ll end up curled up in a little ball whimpering and unable to move until my husband reduces the dislocation for me, braces my joints up and puts me to bed. Or my blood pressure will bottom out and I’ll puke and pass out at the same time.

It doesn’t last long, my wistful wanting, before I’m faced with the reality of my particular disability.

I can’t drive because I can’t be trusted not to dislocate something badly while driving, or go all wobbly and dizzy. Public transport is non-existent, and it wouldn’t matter anyway, because the simple act of sitting up straight with my feet on the floor causes enough problems to write an entire blog post about.

Disability is a multi-faceted and complex thing, but Joe Hockey isn’t interested in hearing our personal stories of woe. To him, disabled Australians are an untapped workforce. Too long we have languished in our beds, on our couches, collapsed on our floors. Not only do we refuse to work through sheer laziness, sucking at the public teat like our life depends on it, but we also clog up the medical systems.

No worries. He’ll just stop indexing our pensions, make doctor co-payments a thing, charge us for blood tests and xrays and take away money from our hospitals.

Soon enough we won’t be sucking at the public teat, because we’ll be dead.

I’ve spent three days digesting this budget and I can’t see a way forward that doesn’t involve crying. How am I meant to survive if I’m assessed as being able to work eight hours? And I don’t kid myself – I have no cognitive impairments and I can walk for like, 2 minutes, so I’m perfectly capable of working, surely.

In the last three weeks, I’ve left my house once, and this was to take my youngest child to a speech therapy appointment. My husband, my carer, drove us. Then I forced myself to walk around the supermarket buying food so we didn’t starve. I spent the rest of that day in bed, and the one after too. In and out, parenting prone, between doing the work which we hope will support us when the government cuts us adrift to die.

You don’t want to know how much of our budget goes on food which is too expensive and doesn’t last nearly enough meals.

And I’m one of the lucky ones. I can freelance to make ends meet when I need to. I have a fledgling business which should be up and running by the end of the year. I have options I can carry out from my house, from my bed, when I need to.

My friends, my family, my peers, they don’t have this.

If you’re under 35 and disabled, sorry, but your disability isn’t a real thing. It doesn’t count. We’re just couchsitters, lazy, unwilling to commit to hard work.

Isn’t that right Joe? We’re disabled, so we have no right to live, let alone live without fighting a daily financial struggle.

And this is leaving aside entirely the nightmare of the changes to Newstart allowance, of forcing young people to earn or learn in an economy with no jobs and unattainable education systems.

Force the lot of us into work. Minimum wage to fill a gap, killing ourselves in the process. Cut the mental health budget – mental illness isn’t a real thing anyway. Cut the welfare. Cut the hospitals. Charge for doctors.

Joe Hockey is out there, smocking a cigar right now while our world crashes down around our ears.

The flow on effect of these changes is unimaginable. Crime. Hopelessness. Endemic poverty.

How many convicts were sent to Australia for stealing a loaf of bread, Joe? Is that what this is? Are we merely returning to our roots?

I look at this budget and I despair. Stamp all over the poor people. Let our blood fertilise your field of propaganda and lies.

We’re just grist for the mill now. Chew us up and spit us out.

 

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