Friday 16 January 2004

Finding

Tuxedo and I seem to be all about the movies these days; specifically, we're hooked on going to the movies at the Sunset Cinema, where we take a sumptuous picnic and wine/beer/vodka and set out a picnic blanket and pillows and sleeping bags, and lie back and enjoy the concept of being able to do such a thing, the gorgeous weather, the ambience ... it really is so terrific, and so much of what summer means to me.  Outdoor cinema and theatre, the beach, long hot days ... ahhhhh.

Perth abounds with outdoor cinemas these days.  Its great.  For years and years, Perth really didn't take advantage of the beautiful weather and atmosphere; the America's Cup changed all that.  Suddenly, wherever there was room, outdoor cafes (now calling themselves "al fresco") sprung up, all kinds of activities and festivals started to develop; there was a huge growth of interest in "gourmet" food and drink, especially that from other cultures, which continues to snowball and gather speed - much to everyone's benefit.  Although the Cup itself was a fleeting thing, it did give Perth a good kick up the arse.  Although, such a renaissance (or something) was well overdue and may have happened, regardless of svelte yachts and hottie sailors.

Tonight we went, on a whim (most of the time we plan beforehand, and get tickets online), with David and Micah and Reuben, to see Finding Nemo.  I've seen it before, and liked it very much, but I actually enjoyed it even more this time.  Its a great film, Pixar did such a good job. I love the voices - Marlin and Dory are perfect, and I love the Australians in the cast - Geoffrey Rush as Nigel (am I right?) the Pelican.  O, and the seagulls - a brilliant, spot-on realisation, going "Mate. Mate. Mate ..." over and over.  Perfect.

Reuben was lovely - he really is a great baby.  He did get a bit grizzly before the start of the film, and Micah had to pop him in his sling and walk around by the lake for a half hour or so, but then he settled down.  Its great the way he settles pretty much anywhere, and with anyone - I had a long snuggle, and he's very responsive, laughing and gurgling non-stop.   He likes me, really likes me!!!  So much fun.  I gather that babies go through a stage at about ten months where they stop trusting anyone who isn't mummy or daddy, so I guess we'll just have to make friends all over again.

So, Finding Nemo.  A good night; it always is good times with David and Micah, I'm so lucky to have a big brother like that, who is married to such a fantastic woman, and that they get along so well with my husband ... I can't imagine what it would be like if they didn't get on well; that would be a major stumbling block, maybe a dealbreaker.  Funny, it wouldn't bother me too much, if, say, my parents had problems with my chosen partner, but if either of my brothers did, David in particular, then I might have had to call the whole thing off.  And I sure ain't the easily influenced type.  Its just one of those things, the big brother-little sister connection.  So I'm very very lucky. 

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Something I've been thinking a LOT about lately is this whole acceptance dealie.  See, I may as well admit it here, but before Christmas (early November in fact) I applied for Disability Pension.  This is something people ("people" being my specialist, other medical professionals, family, friends who know) have been pressuring me to do for several years.  I always resisted because I just didn't want to go there, regardless of how sick and tired and not-functioning I was, regardless of my lack of quality of life and depression and frustration over my purely physical restrictions;  I didn't want to give up work, I didn't want to label myself "Disabled", I didn't want to admit that I'm not, really, when it comes right down to it, "normal" as physically healthy people who maybe worry about a cold once a year and aren't on massive amounts of medication just to be able to function enough to get through the day.

So ... it was a long, long fight with myself.  Its been going on all year.  I know, now, that I cannot work in a full-time, fixed hour job any longer.  Fuck, I couldn't even see myself managing a part-time job.  What employer wants a worker who - no matter how skilled or talented or amazingly competent she may be - is operating on two cylinders three days out of five (and when not working is totally housebound and bedridden), and frequently has flare-ups which keep her in bed - possibly hospitalised - for weeks at a time?  I'm a lot worse than I use to be, its true; my condition has deteriorated which is very depressing and difficult to accept/cope with, but there you go.  I had to face the fact that I simply can't do it any more - I can't work long hours in a high-responsibility, high-pressure job.  That's It.  Plain and simple.  I cannot function well enough to do that, or any other job requiring my presence on a reliable, predictable basis.  Even when I'm having a "good" day, I'm in a helluva lot of pain, I have problems with mobility and am restricted in many activities.  On a bad day - fuggeddaboudit. 

So ... Disability Pension it was.  I filled out the enormous form, and Tuxedo filled out his bit, and Zeus wrote me a Treating Doctor's Report.  My caseworker at Centrelink, I have to say, was absolutely fucking amazing, and deserves a huge monetary bonus (knowing Centrelink, he'll get made redundant in their efforts to downsize anything that moves) for being so helpful, way beyond requirements.  After a few weeks I was called in for a Work Assessment interview, about which I was nervous as hell.  One of the big issues I face with the health thing is that, apart from the fact that I walk a bit funny, I don't look sick.  This makes it difficult to explain to people that I am, in fact, very unwell and have a debilitating physical condition.  "But you don't look sick", they say.  Oh well then, I'm obviously just faking it then.  Pffft. 

The interview went well, the doctor was very pleasant, the structure of the interview was pretty casual, just relaxed chatting, not threatening at all.  I explained how life was, what I could and couldn't do, what a "week in the life" was like, I showed her my diary where I rate each day, and which shows clearly all the social events and appointments and tasks I have to cross out and re-schedule because I'm in too much pain to move.  She asked pertinent questions and was very impressed with my c.v., being very sympathetic as to how frustrated I must feel, having had that sort of employment experience and knowledge and skills and not being able to use it. 

I told her how I felt about work; that I'd really love to be able to, for the money of course, but also for the intellectual stimulation and social aspects, but that I just, physically, could not do it.  That the only job I could manage was one where I called the shots, where I rang the boss and told him that, maybe, I could manage five hours that day ... but I'd end up the rest of the day at home or in hospital.  What employer can accept that, in this day and age?  I told her about my past experiences with unsympathetic (ha! talk about a fucking understatement) employers, and how that had affected me.

So ... after chewing my nails for a few weeks (the government is trying to cut back on the numbers of people receiving Disability and bringing in daft schemes similar to "Work for Welfare" for disabled people), on returning from our holiday down south I had a telephone message from my caseworker saying I'd been approved for the Disability Pension.  As the Headmistress remarked, I'm now officially Disabled.  I really don't know how I feel about that; I hate labels, but in a way its a relief ... I am recognised as being different, I don't have to fight it anymore.  Also, I get $$$ (very few, but every little helps) and some other benefits, and in general I don't feel so dependent or such a dreadful burden on Tuxedo.  I generally hate labels and simple categorisation, but in this case it might be a Good Thing.

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So ... acceptance.  I've been thinking about this a lot, as I said, and have come to a sort of conclusion.  Acceptance is something that people do when the situation is finite eg, they have been diagnosed with terminal cancer and have to go through all the classic grieving/denial stages before they accept the inevitable.  I always thought that being able to accept my situation would be the best thing; you know, gain some inner peace and serenity or something.  I wouldn't get so frustrated and stressed-out about what I could and couldn't do. 

The alternative to accepting a situation is to fight it, like many cancer patients, hundreds of thousands of other disabled people, and me.  Fighting a situation you can't really change or don't have any power/responsibility over can seem counter-productive, but the alternative, in my case at least, would be to go all defeatist:-

"I can't change anything"

"What's the point of trying to make things better by exercising blahblahblahdiblah"

"Why bother struggling to have a halfway decent quality of life when that struggle hurts and runs me down and makes me frustrated and depressed"

But I started thinking that maybe, just maybe, not accepting is a good thing for me.  Because it makes me fight and struggle to do all I can do; there's no way I could have gone to university and got my degrees, worked in the types of jobs I've had, if I hadn't gritted my teeth and Just Done It.  I probably wouldn't even be here writing this and thinking about this shit if I'd had a defeatist attitude; I would have topped myself in one of my extremely dark depressive phases that haunted me all through my teens, twenties, to this day.  I figure that maybe acceptance, per se, is not for me, so I shouldn't try for it.

In all this thinking and introspection I'm finding the possibility of a different kind of acceptance; I want to try to not get upset and depressed and so frustrated I want to hit or break something I'm so churned up by anger and rage when I am held back from doing something.  I want to try to go with the flow more, let that situation run off me like (cliche alert!) water off a duck's back.  To be consciously relaxed and easy.   I have to remember that I'm doing more now than I was a year ago; more socialising, more running-around doing errands, more exercise (and intensive exercise at that), and I should damn well be throwing myself a party to celebrate that, every single day.  I have to keep reminding myself of the gains I've made, not run myself down all the time and beat myself up over what I can't do.  There will always be other times when I can do those things, and other things to do, and always, always, different and numerous obstacles to surmount. 

Be easier on myself.  Just keep on plodding.  Keep on battling. 

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