Preferred State of Being

Some people don’t remember their dreams.  Others remember bits and pieces, while others remember them in absolute detail.

I’m sure that there are dreams I have that I do not remember, however I also remember bits and pieces, and sometimes I remember them in absolute detail.

Which can be somewhat problematic.

You see, in my dreams I can walk, run, climb, jump, dance and fight in a way I just can’t in real life.  I have a lot of nightmares, sure, and because of previous real life abuse, sometimes I wake up shaking and terrified and it takes all day for my brain to catch up and realise it was just a dream and I am not in any danger.  I can’t even tell my psychologist about these nightmares, because some things… some things just should never be put in words.  This is one of the not-so-fun parts of Post Traumatic Stress Disorder.

Other days though, whether I had a nightmare or not, I wake up just wanting to go back to sleep.  I don’t care if it’s scary – at least I can move!  I have a life in my dreams.  I do things.  It is so much better than the nightmare I live where I get up and sit on the couch all day, trying at times not to scream at my pain because it scares the kids.

I try really hard not to scream at my frustration too, for that matter.

Frustration at doctors that still do not understand Ehlers Danlos Syndrome, and frustration at the fact that I can not afford to travel to those doctors that do.  Frustration at the government for deciding that propping up the racing industry is more important than funding wheelchairs.  Frustration at employers for not recognising my enormous potential and ignoring my obvious draw-backs.  Frustration at a world that wants to hide people with a disability, because we are too expensive to keep and too much bother to help.

Hell, on my worst days I even get frustrated at other people with a disability.  I’m finding it especially difficult at the moment reading articles about how productive the disabled workforce could be if we were given the means and opportunity, because in this world that we currently have, that is NEVER. GOING. TO. BE. ME.

More than all of these frustrations put together though, I am frustrated at myself.  I have always been street smart.  I have always been able to find a way.  But when it comes to my disability, I just can not.  I can not find a way.  I can not find a way to have a life.  It has been eight years, and the only way to achieve that goal requires far too much money.

Money for a wheelchair.  Money for a car that can hold a wheelchair.  Money to move to a town or city that is wheelchair friendly.  Money to move to a house with a heated pool for therapy.

Can you imagine the average Australian taxpayer agreeing to use their tax dollars to fund a heated in-ground cement pool with ramp for one family, even if they have been told that going to one in town is useless because of the pain levels reached in getting there and back, AND that it would also benefit two children who have inherited this genetic condition from not ending up as disabled as their mother?  Nah, me either…  Not that there is one in town.  Apparently the people that need one lost the cost/benefit analysis.

Seriously – that is what I was told at a meeting with some local disability organisation.  Charming.  Especially as I had to hear it not only personally as someone with a disability, but as a mother who fears for her children.

The local council doesn’t pay my pension I guess.  So there really is no financial benefit for them.  And who cares really, about a woman in her mid-thirties, wasting away in her lounge room?  Frustrated out of her mind…

I suppose I really must apologise.  I read a lot of blogs and articles on disability issues, and despite (or possibly because of) my Aspergers, I recognise that they all follow a main theme of fluffiness and light.  I understand that the role I am supposed to play as someone with a physical disability is that of someone who is living life to the full despite her handicap.  I am supposed to be holding myself up as an inspiration to others, and an example of how, if I could just access the NDIS, I could work and pay my own way.  I am supposed to be celebrating the idea that we can all do anything if we just put our minds to it.  And I have tried to write those blogs with all the enthusiasm I can muster.

But what a heap of shit.  There are people with a disability who do great in life.  They can go to university, and be employed.  They can go out and have fun.

I am not one of them.  I could be though with a bit more help, support and equipment.  And perhaps that is what is most frustrating of all.

Sure, I’m very grateful that I live in this country where the government gives me just enough to live.  But it’s no life.

So here I am – waking up from scary dreams where I am running from danger.  And all I want is to go back to that world where I have a life, scary though it may be.  All I want is to go back to sleep.  Forever.

No doubt, this article (and myself) will be seen as depressing.  Not helpful at all to the cause.  Just some loser having a whine about hard she has it, and crikey! Doesn’t she realise there are people worse off than her?

I do realise that.  I realise that the people worse off than myself may not have the opportunity or means to tell you about it.  And so I am doing just that.  Because I do not want people under the illusion that having a disability is just being different.  Sometimes it is not just being different.  I have Aspergers.  That is a difference.  Being in pain 24/7 with the only cure or relief being death, just plain sucks, no matter how you try to pretend otherwise.  And until people realise what it is like, they are not going to be inclined to stand up and help.

When all the stories are fluffy and light, then people think that this world is fluffy and light.  When all the stories are fluffy and light, then there is little inclination for the average tax payer to stand up and say “I am prepared to do without some concession I currently receive so that these people over here can have a life”.  And unfortunately, that is exactly what we need.  People with a disability and their carers have been great in advocating, but we need more.  We need the average tax payer to stand up with us.  And we need them to be prepared to give something up for us.

In a world where current affair shows demonise people with an invisible disability as ripping off the system and the people cheer that these bastards have been outed, I really can’t see that happening.  Can you?

I try to have hope for a better world.  That hope fades with each new government cutback, each new article about how every Centrelink benefit except Disability Support Pension, needs to be raised, each new article on how people with a disability are “not broken, just different”.

Excuse me now please, if you will.  I’m going to go back to sleep.  Even my worst nightmares in that world do not compare to the one I am living here in this one.

Disability consumer and activist. Pissed off since 1995... Mad as a hatter since way before that.

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Posted in Autism, Disability, Ehlers Danlos Syndrome, Mental Health, Personal
5 comments on “Preferred State of Being
  1. It is so hard to read this. If I feel helpless to help you than how hard must it be for you, feeling helpless to help yourself and your children. Keep being a voice, chick. It’s what you can do. And hopefully despite it all things working against it you will be heard by those that can change things. xx

    • But you DID help me 🙂 When I first started getting sore and you told me about SPD… Just knowing that I wasn’t crazy helped, and still helps now I think 🙂 Thanks for that! Sometimes I think life is what it is, and there is jack shit anyone can do about it. However a wise woman once told me that you help in these situations by being a witness – by just listening and validating the other person’s experience. I think that is why I wrote this – I’m not expecting miracles, but I just wanted to let people know “this is how it really is”. I don’t want to just disappear you know?

  2. I constantly hope for a better world. I can’t imagine what it’s like to be in your shoes. Keep writing and telling it like it really is, not how the world would like you to be. Big hugs…

  3. […] was this keeping the details hidden I think, that led to some controversy over my blog post Preferred State Of Being.  I was told by one person with a disability that I should seek professional psychiatric help and […]

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Pissed off since 1995. Mad as a hatter since way before that.

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