Headfuck

In summary: No one died.

by Veronica on July 19, 2014

in Evelyn,Headfuck,Soapmaking

Internet, I cannot tell you how nice it is to be home. I’ve spent the last three days in hospital with Evelyn after she caught RSV and gastro together, making her horribly unwell.

Evelyn sick

Three days of IV fluids and a little oxygen and we were allowed to come home yesterday for a trial to see how she does. I am grateful to say she rocked the trial and we are still home and she’s feeling a little better back in her own routine. Not well enough to run around the house, but well enough to have opinions about putting on pants this morning.

We were worried and we’re so glad she’s on the mend now. It will take her a while to gain back the strength and weight she lost, but she’s eating a little and toddlers are excellent at bouncing back. Unlike Nathan and I, who are still getting over the effects of the gastro and RSV Evelyn gifted to us.

On the being home front, there’s nothing like sitting next to a toddler who is too unwell to do anything but sleep, watching her oxygen drop lower and lower to make you appreciate small things like a hot cup of tea and being able to potter around the house without worrying someone is going to cough themselves into unconsciousness.

Not to mention the bliss of sleeping in my own bed last night after the hospital pull out and previously, a mattress on the floor so I could monitor Eve’s breathing.

Things have been quiet here while I tease out what I’m doing. Evelyn update above aside, I’m not a Mummyblogger any more. So I don’t know what I am. Tired, mostly.

The fortnight of serious illness coupling as it did with the school holidays means I am seriously behind on soap work. There is 24kg of soap needing to be stamped and honestly, I’m not sure I’ve caught it in time. It might be too hard to stamp and I’m loathe to ruin any soaps trying. So I may just ignore it and send them out unstamped.

My routine is thrown out, and I’m struggling a bit, stepping back into the role of maker, writer, business owner, mother, nursemaid. Taking a fortnight was the only choice I had, but it’s hard now, playing catch up. That’s the problem with working for yourself – if you’re too sick to work, the work just waits for you. No one else does it for you.

It will be okay. I’ve only got eleventy hundred soap buckets to scrape out and wash, and like, five hundred soaps to label and wrap. When I get around to buying the paper for labels. And designing the labels. And printing them.

Holy mother of god but I need three more of me. And minions. Lots of minions.

 

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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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Darkness and light

by Veronica on June 24, 2014

in Cancer,Grief,Headfuck

Five years ago, we clustered around a bed in a palliative care ward, waiting. Holding hands, talking, but mostly, waiting.

It didn’t take long in retrospect, although the hours felt interminable, waiting for the next breath to come, the death rattle heavy in the room.

Until the next breath didn’t come and it was over. Months of appointments, of waiting, of saying goodbye over and over, culminated in one sharp moment when it stopped.

And then we all breathed again and had to go on without her. She stopped, but we failed to stop with her, and the hole of her leaving grew bigger as we missed her.

The first sign: wild ducks fleeing, circling frantically overhead like a crowd of mismanaged school children, no one sure where to go next. They hide in the trees and fall silent.

Not a bird in the sky, until we look closer, and see them, circling. Hunting maybe, or courting.

Round and round the eagles go, my eyes spotty from looking up at the bright sky, a cup of tea warm and heavy in my hands. The undersides of their wings glint gold in the sunlight, bright enough to make my eyes tear up as I look away.

We watch until they disappear over the horizon.

The crows return first, flying over, cawing their life loudly. Then the sparrows. A rosella. Our neighbours pigeons.

Life goes on, even with the shadow of death hanging over us.

Forty minutes to make three kilos of soap. Twenty minutes standing outside. Ten minutes reading. Today is broken up into blocks of minutes as we count down.

For a moment, everything will stop.

And then I’ll draw breath again and on we’ll go, into our sixth year without her.

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June has stolen all my words

by Veronica on June 21, 2014

in Grief,Headfuck

After five years, it feels strange to come to this place, here, and talk about grief. About how it changes, and yet doesn’t. About how grief never leaves you, the great whistling hole through your centre never closes right over.

Grief is grief is grief.

Missing someone never quite stops. Things happen and I wish, I wonder, I want.

It’s been almost five years and I don’t have words anymore.

A series of events conspired to send me into a place mentally I haven’t been for a while. I feel raw, the bandaids torn off with no warning. I think about writing and stop. Turn away. Do something else.

Do you really want to write about that? Open yourself up for more judgement?

I don’t know.

I’m tired. I’m tired of feeling like I need to defend my life, my choices, my right to be here.

On Stateline last night, a family of acrobats twisted and twirled through the air, circus tricks and stunt work. They glossed over the fact that the house has no running water, limited solar power, there’s no money. Focus instead on the happiness, the family togetherness, the joy that living an honest life brings.

I watched and I laughed and laughed, feeling a kinship with a family I’ve never met.

How dare we be happy. How dare we choose a life outside of the suburban normal, nine to five, a salary and prospects of more debt to keep up with people we don’t like.

How very dare we.

I can see them, the unhappy people, hiding in the corners here, judging, waiting and watching like a dog waiting to be thrown a bone.

I’m disabled, I have to right to happiness. I ought to be miserable, a loser in the genetic lottery.

But really, I wonder, why does the life of one small Tasmanian family offend them so much?

It’s all tied to grief, to missing, to yearning. Someone came in and stomped around, tore down my walls; my defences. I need a thicker skin.

Maybe then I wouldn’t feel so sick when I think about writing about my life still.

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Daily Tele Fuckwittery

Here we go again. Disability in the spotlight. The masses banding together to point their finger at those goddamned witches.

“You’re not disabled!” goes the cry “Get a job you benefit scrounging fucking scum.”

The assumption remains that the disability pension, is, of course, an easy money grab. A way to sit at home on your arse, doing nothing, rorting the system.

It’s not true. Between the doctors, the paperwork, the Centrelink workers and the independant assessors, I’m not quite sure how anyone manages to get a pretend injury through the system. There are hoops to jump, a mile high.

It’s not an easy thing to go through this process and be successful.

Yet again the great unwashed shows off their underbelly of ignorance about the nature of disability and the pension.

In the wake of the budget, there has been silence surrounding the changes to DSP for young people. Except for a small core of disability activists, rightly pissed off at the changes, no one says anything.

The implication is people with disabilities need to be forced into work.

And the thing is, it’s not that we don’t want to work. It’s that the job opportunities for people with disability are few and far between. Discrimination is rife. The issues with transport, accessibility and understanding are often insurmountable. Stella Young outlines this beautifully in her article at Ramp Up – which has been defunded in the latest budget.

Those disabled people. They don’t need a space to talk about disability. How … awkward.

I stood up this morning for ten minutes making school lunches. By the end of it, I was dizzy, nauseous and wondering whether I could do the rest of the school morning from my bed. Would you, as an employer, hire me when I can’t stand for very long? Tell me how I’m meant to get a regular job.

Would you hire me if three days out of five, I couldn’t make it to work because I couldn’t get out of bed? Or, once I got to work, I spent all my time in the toilets throwing up?

What about if I passed out at my desk from a blood pressure drop. Would you keep me employed then?

This is leaving aside transport issues – no public transport, no license, the potential to dislocate a joint while alone, leaving me screaming and useless on the floor.

Would you hire me?

God knows I wouldn’t hire myself. I’d be an unreliable employee at best, and a terrible one at worst.

Yesterday, it took me 35 minutes to cut 24 bars of soap, sitting down every few minutes. I’m not a productive worker. I couldn’t make your numbers look good.

And all this is ignoring the small issues, like the fact that JUST THEN, while I was fixing Evelyn, my ankle collapsed, sending me crashing to the floor in an ungraceful pile of flailing limbs.

It’s not the look a traditional employer goes for, is it?

There are barriers to working with a disability. It’s complex, not all disability is clear cut and obvious.

Some days I can’t shower without sitting down and asking for help under the water. Some days I can’t sit up straight on the couch. Well. Most days actually.

And yet, I still get bullshit like the Tele headline above, and a family member calling me “putrid” – below.

Family vitriol

I am not a slacker. I work twice as hard as most people just to do the simple things in life. That’s the nature of my fucked up shithouse genetic disease.

I can do some things, obviously. I can write. I can and do make soap. I can open a business. I can work from home, working around my disability and my need to lie down often.

The barriers stopping the disabled working aren’t ours.

They’re yours.

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