I love going to the movies.  I love seeing enormous people who are not politicians or corporate schmuck smeared with PR propaganda juice going about a life.  I get to see through their eyes, and sometimes, on very special occasions, I see something so different, so good or so bad, and it changes me.

Franz Jachim, some rights reserved

In the ordinary world, we're all attentionally deficit.  I work at home on a computer, and against my better judgment, sometimes while I work I flick backwards and forwards between my work and the internet because I simply can't help myself.  On any given day I tend to have 10 browser pages open at once.  Before I finish the end of one page, I have generally flicked over to another, or to check my email, or to look at Facebook when I'm on it (at the moment I'm not), or to look at Twitter.

We are starved for stories in the world we live in, though we're surrounded by words and great stories.  But where are the good stories about us?  Where do good stories fit in a world where the economy is the god, and we are forced to be its subjects?  Where do we fit in?  And how do we see each other?  It feels like every turn in this world I am encouraged to see people as cogs.  There is nothing to stop me from looking at you and seeing someone who is simply not-me, and simply in my way.

I sat in a university class a couple of years ago listening to fellow creative writing students who are 20 years younger than me talking about how flatpacked and meaningless this world is to them, how going overseas opens up their eyes because they see people who are living in ways that matter.  There was something about hearing those people say those things that made me feel hope.  Even though they have been born directly into consumer culture in a way that I wasn't 44 years ago, they still harbour the same hopes and desires for things that it's becoming harder and harder to find the words for.

This search for meaning, for story, is why I love writing and reading.  And it's why I love going to the movies.  Like Patrick Goldstein, I am an old-fashioned purist when it comes to the cinema.  Even in the age of Netflix and DVDs, there is still a ritual about moviegoing that sets it apart from those other forms of viewing.  Something about sitting in the dark feeding your face with popcorn with a whole lot of other people who are all sharing the same story turns it into a sacred space for me.

The old Barkly Theatre in the Melbourne suburb of Footscray.
 State Library of Victoria, some rights reserved

When I go to the movies, I guess a lot of what I like to see is about meaning as well.  When I was a child and before I could read, my Mum read a story to me every single night.  By the time I was eight years old I was spending afternoons clambering up the Faraway Tree, polishing off one of Enid Blyton's books from the time it took to end lunch and begin dinner.  It was escape, but it was also developing imagination.  It was realising that there are as many different ways of looking at pretty much anything, and that every way you do look at something opens up a particular world at the top of your tree.  It colours the way you see everything.

In the cinema, I am stuck in the best possible sort of way.  I'm not at home.  I can't go and get online.  I am forced to sit there, even if my mind wanders.  I don't want to check my mobile phone.  Nor do I want anybody else to check theirs.  We might miss something.  I want us, just for this little time, to be all looking the same way and all seeing the same thing.  Just for a couple of hours.

Moviegoers at the Melbourne International Film Festival, enjoying the wonderful Forum Theatre in Melbourne's centre.  Pic by Anne Holmes,  some rights reserved

I developed chronic fatigue syndrome when I was 29 after a bout of glandular fever.  Fifteen years later I'm still dealing.  I really loathe that stupid name, chronic fatigue syndrome.  Sure, fatigue is a large and scary component, but it’s nowhere near the only one.

A panel of CFS experts from the Institute of Medicine proposed a new name for CFS in February - Systemic Exertion Intolerance Disease.  Which is none too soon, given that a cruddy name like Chronic Fatigue Syndrome doesn’t particularly assist people in having their illness believed, by doctors and others' and especially not in a world that is itself exhausted.  I helped run a booth in a shopping centre several years ago just before CFS Awareness Day.  A woman breezed up in a flood of perfume that smashed itself into my nasal cavity and made me feel dizzy.  After hearing our explanation for the booth's existence she breezed, "Oh! I might have that. I'm soooooo tired all the time'" before flouncing off for a bout of pleasure shopping.  Now, no new name is going to puncture that sort of breezy self-absorption, but in a world full of people whose adrenal glands are taxed and pushed, a differential between garden variety 21st century tiredness and CFS is beyond overdue.

So I welcome the idea.  It’s just that systemic exertion intolerance disease is not quite working for me.  I mean, it's a start, but it's certainly not a stop.  At least it gives the impression that it's not just about feeling really tired.  It impresses that it's bodywide.  It even maybe gives a bit of a hint that for those CFSers who are well enough to not be bedbound, there is a variation in the amount of energy your body is granting you today which is often predicated on whether you've overdone it yesterday or the day before.  Which means that the person you're hanging with over an extended cafe sesh today, and who looks really well and seems rather together, may well be the one paying for it tomorrow or the day after by spending most of it on the couch.

The problem with finding a new name is there's not an umbrella big enough under which to fit the wide variety of symptoms that come with CFS.  It is truly systemwide, and its flow-on effects mess with your endocrine system, your digestive system, your central nervous system, your organs.  They range from bedbound people requiring care to athletes who are able to still compete as long as they monitor themselves the rest of the time.

And perhaps we shouldn't even try to find a new name for CFS unless it’s marketing-savvy.  I loathe the mere existence of marketing departments, but nevertheless, if we want greater recognition of our illness – which translates into more funding for research to find its cause – perhaps we need to sex this bugger up.  Systemic exertion intolerance disease is about as raunchy as Fifty Shades of Gray.  Plus it’s really boring.  About as boring as calling a newly-discovered star EPIC 201367065.

So I propose instead we call it Albert. Or Glimpf.  Or Smuggleglupp.  Easy to remember (after a fashion).  Much easier for the marketing department to invent a readily-remembered little logo dude to raise awareness around.  Smuggleglupp would be like a cute purple blob, smiling weakly from her spread-out morass on the floor.  Albert would be frizzy-haired, for reasons best known to my odd imagination.  I kind of like the idea of personalising something that has wreaked havoc on millions of bodies ~ makes it somehow more palatable, workable, in a way that systemic exertion intolerance disease probably never will.  That thing is better than CFS but it still smells like it was invented by a committee.  And how do you pronounce its acronym, SEID?  Is it SAYED?  SEED?  I personally reckon if it makes it through the goals as the new CFS name we go with the latter.  I’ve got just the logo for it – a flaccid, flabby sperm lying on the floor of the fallopian tube.  Too stuffed to swim anymore towards the fuzzy-edged egg screaming all wired 20 metres away.  That’s as good a place as any to define a disease that rides us right down to our cells.

Albert has a better ring, though.

Book Review - The Happiness Jar by Samantha Tidy

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Friday, 6 March 2015

I really wanted to love this book, hard.  The main idea of it really tickled my fancy.  Rachel Hudson dies of cystic fibrosis at 27.  What she leaves behind in her will, from the very small estate she accumulated over her small collection of working years, is money transferred into instructions for her mother, Beth, and her brother, Matthew.  Rachel was a spirited type, the antithesis of her anxious mum, who uses her faith to hide from life, and her disconnected brother, who hasn't found his place.

<blockquote>Despite her disease, Rachel had not resisted the travel bug;  instead she had packed her illness into her luggage like a bulky and inappropriate souvenir bought too early in one's journey.  Her medication and her portable vaporiser packed deep into her backpack, she had set off to Europe, Asia.  The postcards that had accumulated on the fridge, Beth had, upon their arrival, placed carefully in a shoebox under her bed.  Beth had wondered if this shoebox might one day be some tangible object that she might need to caress, in the absence of her wild daughter, found dead and raped in some horrendous city on the other side of the world.</blockquote)

Brian, the family's father and husband and the focus of the prologue, has disappeared years ago, the aftershocks from the Vietnam War untethering him from the ground that would have kept him in the place he wanted to be.

Each character was reasonably drawn.  I got a feel for each one that they were real, whole people, except perhaps for Beth's faith, which seems to be somewhat of a caricature.

But it's the language and the grammar that broke this for me.  I lose concentration when a sentence does not have an end enclosing comma separating a phrase.  I lose concentration when those commas are then placed in other spots they're not meant to go.  There was a repetitive use of the characters names that with a little work could have been smoothed.

Which is a shame, because this book could have been something special.  I would love to have seen this book given extra airing time, laid aside for a few months until that last hard edit.   There were glimpses of possibility here and there, in a turn of phrase ("She had called upon her faith to hold her.  It was a rope she could latch on to.  A thread.  She could weave herself in to it, and settle in the twine") and a turn of plot, and in the drawings of the Pilbara, but these were overridden by clunky phrasing and a particularly implausible plot twist towards the end.

Not all novels have to be literary.  (And I guess if I had to define what I read it's the stuff that verges closer to the literary than mainstream).  Not everything has to be literary.  But everything has to be as good as it can be.