New Years

I’m not sure whether most bloggers have a heap of “drafts” set up ready to go (for whatever reason), but I usually do, for varying reasons.  Usually it is because I want to get the wording just right, or because I get half way through and have forgotten what my point was.

Ok, so usually it’s the latter *blush*.

This following blog however, was put on the draft pile for another reason.  I wrote it in Word and sent it away to see if I could get it published.  It has been over a week and I have heard nothing, so I assume my literary charms, well, didn’t.

So – here it is.  A little late, so if you are interested in order, it comes before the blog about dreams being better than life sometimes.

*****

Seeing in the New Year has always been an exciting time for me.  It carries a magic about it that hints at anything being possible for the year ahead.  Some years I have made formal New Year Resolutions, and other years, I have been content with generalised plans.  In any event, the feeling of starting fresh and having the world at my feet has remained a steadfast theme.

Until this year, for this year I seem to have lost my New Year’s mojo.

For eight years now I have been gradually losing mobility due to pain and joint dislocations.  Six months ago I was finally diagnosed with Ehlers Danlos Syndrome, which is a rare, genetic, connective tissue disorder.  To cut a long story short, I have a lot of pain, and a lot of joint dislocations.  I also look pregnant while not actually being pregnant, which is loads of fun at conservative bars where I get “the look” when having a drink.

I also have some organ difficulties, which is going to make my future life hell I’m sure, however at this stage of the game, my real concern is the pain and dislocations.  Dislocations happen frequently enough to not bother me per se (not to float my own boat or anything, but I make Mel Gibson’s act of putting his shoulder back in during his Lethal Weapon days, look positively sissy), however the pain is a real issue.  And given my age, and previous mental health history (misdiagnosed Aspergers), doctors are not too keen on handing out the pain killers.

The Queensland Government, in its infinite wisdom, has cut disability services too, so at the moment I am looking at a rather long wait, and a very probable negative result, on a wheelchair application my physiotherapist has put in for me.  I am rather housebound quite a lot of the time.  And this is why New Years this year has lost its former magic.  I don’t have the world at my feet any more.  The world has moved over yonder, out of reach.

So much of our identity in this culture is contained within our profession, and what we do, rather than who we are.  When we first meet someone, we first ask them their name, and then we ask them what they “do”.  And usually we mean their job, their profession, and not their hobby or special interest.  And so it probably should be, given how much time those of us who can, spend at work.  Even stay-at-home mothers or fathers can gain some sort of identity from their daily tasks and accomplishments in physically raising their children.

For people such as myself though, who spend their lives on the couch of life (and actually on the couch), it is just one more cruel twist in a life already filled with far too much pain.  People have largely stopped asking me what I do, as it becomes more and more obvious that not only do I not do much of anything, but my excursions into the outside world are constantly fewer.   I still feel it however.  I still feel that urge to be defined by something other than the moons circling my mid-section and my good sense of humour.  I still feel that pull to achieve something more intellectual than contorting my body enough to wipe my own arse without dislocating a hip.  I am completely over the joy that is celebrating my accomplishment of any given week – usually the fact that I had three showers instead of two with bonus points if I have managed to wash my hair.  It is almost as if I can feel myself fading away into nothingness, invisible not only to the world, but also to myself.

Unfortunately, finding employment when you are consistently inconsistent is rather more complicated than one might expect if one reads parenting forums (or other such online nonsense).  Apparently there are plenty of jobs out there for people such as myself; however I have been looking for years, and am yet to be employed.  I have tried many things to no avail, and have even enlisted professional help in the form of disability employment agencies, only to be told again and again that I am “unemployable”.

And so I think that this New Year, my resolution must be to figure out who I am as a person.  Not wife, mother, volunteer, or person with a disability, but something else.  I am in far too much pain to ever be that inspirational person with a disability who has defied all odds to make an Olympic team, or climb Mt Everest that is for sure.  And yet…

Maybe I can start urging people to think outside these boxes, and consider what life is really like for some people with a disability.  Maybe I can start urging people to think about government schemes that guilt and bribe people with a disability into looking for work instead of supplying them with the equipment and support they need to do so.  Maybe I can start urging people to think about what it must be like, to look out into the world and not be able to participate in it because there are no employment opportunities for people who are consistently inconsistent, or for people who need a wheelchair to leave the house but are not eligible for one.  Maybe I can start with one sleepless night, one idea and one article.  And maybe, just maybe, we can all work on changing the world a little for the better, in our own way.

So maybe I do still have the world at my feet.  Maybe I just need to pull it closer and make it fit in a different way.  And maybe I can define myself not by my occupation, but by my vocation – a desire to show people that it is not a matter of thinking outside the box, but of realising that there is no box.   And to show people that we should be defined not by what we do with our hands, but by what we hold in our hearts.

I wish you all the very best for the New Year.

 

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

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

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