Category Archives: Chemotherapy

Return of the Dancing Queen.

“I like attractive people who aren’t so terribly aware that they are attractive… people who aren’t afraid to roll on the floor and make fools out of themselves.”

Bob Fosse

Watch out world! The Dancing Queen is back.

Tonight, my dance class kicked off again for the New Year, and I was there with bells on. Well, I was actually still wearing my pink satin ballet slippers, pink ballet tights and a new addition…the black “tutu” I picked up from Vinnies (charity shop) last weekend.

While this might all sound pretty “normal”, it was a contemporary/jazz/lyrical class. For the uninitiated that means you DO NOT WEAR BALLET ATTIRE!!! However, I’ve created my own space with my pink satin slippers and they’ve sort of become “me”. Besides, they really are too pretty to hide away in my cupboard, now that we’ve changed codes. By the way, I’m not the only one who’s turned up to class with a certain je ne sais quoi either. Our adult dance class has a few subversive elements.

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While you might find someone with limited mobility is an unlikely dancer, perhaps that’s why dancing has suddenly become so important to me. That when something gets snatched away, you realize how precious it is and you want to grasp it with both hands and swing from the chandelier. Moreover, I’ve also found a safe and accepting place to dance and we’re a great bunch of people!! That has certainly made a world of difference! I can simply have a go. Do my best and hold onto that sense of sheer exhilaration for as long as I can.

I’ve also realized, now that I’m nearing 50, that I’m finally stepped out of my metaphorical cage. Indeed,  I’ve finally found my wings.It’s such a shame, in a way because I’ve lost a lot of time and they were always there waiting for me. However, I guess that’s why you have to earn your wings. They need to be appreciated, valued, treasured and used. They’re not just pretty ornaments.

Like so many, my reluctance to dance and my paralyzing self-consciousness,  wasn’t self-imposed. The cage came from outside. That constricting peer pressure, which decreed that only the cool girls could dance. That anyone as “unco” as me, shouldn’t be seen dead on the dance floor. Rather, you had to hide yourself away.

Yet, dancing is for everyone and by denying people the opportunity to dance and set themselves free in the physical realm, you’re cutting them off from their soul.

That’s not just rhetoric either.

While the context is a bit different, I still remember that dreadful scene in Dead Poet’s Society where Neil’s Dad wouldn’t let him perform in the play and pursue a career in the theatre, and he took his life. He couldn’t live being so estranged from himself.

That’s an important scene to keep in mind as a parent for a multitude of reasons.

Anyway, I digress. Getting back to tonight’s class…

Tonight’s class was inspired by the choreography of Bob Fosse. Fosse was born in 1927 to a performing family and hit the vaudeville stage at a young age. In addition to his more traditional dance education, Fosse had first-hand experience with the burlesque style of dance, and this informed much of his choreography. One of his earliest dance creations, choreographed at the age of 15, was a suggestive nightclub number featuring girls wearing ostrich feathers. This early moment hints at the larger thread of sensuality that would run through all of his work. However, his work isn’t purely burlesque. It is its own unique amalgamation that results in cool jazz movements.

“Live like you’ll die tomorrow, work like you don’t need the money, and dance like nobody’s watching.”

Bob Fosse

However, Bob Fosse was another world away tonight, and my eyes were glued to my teacher, Miss Karina Russell, who translates professional dance into something I can almost follow. By that, I mean something I can almost write about. The actual doing needs a lot more work. My  arms and legs were all over the place, which is to be somewhat expected with a new routine but I’m still trying to take in what I see  and am a long way of translating that into my own movements. Yet, not to be too hard on myself, I am on the way and it was only the first take.

Moreover, despite my struggles, I received nothing but encouragement. We had fun, laughed and I stretched myself beyond my comfort zone and also extended my body and mind beyond the width of my laptop. That’s important in itself. I spend hours writing, researching and not stretching my body beyond my chair.

Have you ever attended an adult dance class? Why or why not? How did you feel about it? I’d love to hear from you!

xx Rowena

 

Christmas Post.

We hope you and yours had a Merry Christmas.

Ours was a wonderful Christmas. Indeed, what I think was my best Christmas in quite a few years. My health is really good. I’ve been in remission for almost 3 years now without having the blood transfusions of IVIG I’d been having every 3 weeks for the preceding 5 years. Finally, I was actually able to raise my head off the tarmac and enjoy take off…yippee!

I obviously don’t know what Christmas was like at your place, but it was chaos at ours. Yet, amidst the multifarious layers of ripped Christmas rap rolling around like tumbleweed underneath the Christmas Tree, there was some structure, tradition and a respect for the true meaning of Christmas.dsc_5189

I won’t go into all of the presents but my husband bought us a double hammock each in a frame for Christmas. This will be great for getting through all the books I gave the rest of the family, some I must confess with a vested interest. After loving The Rosie Project by Graeme Simsion, I gave my husband The Best of Adam Sharp. Of course, he was cynically wondering whether this book was going to live up to his first two novels. I bought my daughter an intriguing book with some text but largely drawings which had been recommended by my friend’s teenage daughter. My Dad thought the book was a crock and that her “gums were flapping”. However, when it comes to picking a book for my daughter, a girl a couple of years older is a better judge in my mind.

Gee, isn’t Christmas fun?!

Anyway, I’m getting ahead of myself because we haven’t left the house yet and I’ve accelerated right through Christmas lunch, afternoon tea, the pool, the royal splinter. I’d better watch out. I’m accelerating so fast, that I’m about to get a speeding fine and double demerits are in force. Just as well Santa’s already been, or I’d be at Number 2 on his Naughty List. That is after Lady, who is still sitting at Number 1 after devouring our home-made Christmas Cake last week.

Somehow, we managed to force the front door shut without the rising tide of pre and post Christmas whatsymecallits falling out the door. Actually, make that a tsunami, not that I’m being melodramatic and pushing the limits of exaggeration beyond all credibility. I’d never ever do anything like that!

Our approach to cleaning up for Christmas? Abandon house!

The dogs didn’t even get a bath and did I hear the roar of lawn mowers somewhere in the distance? Well, they mysteriously by-passed our place as well. Then again, you need to have a lawn to mow. I haven’t had time to give our lawn much of an inspection lately, but I think it’s been burned to a crisp. Incinerated by the hot Australian sun… a bit like a snag on a BBQ. They’re supposed to be charcoal, aren’t they?

Next, we all piled in the car to drive down to Sydney via the M1 Freeway.

Every year, we regret leaving late and think about the dream run we would’ve had if only we’d left an hour earlier. However, it turned out that leaving our neck of the woods, was pretty much as bad as it got apart from a small stretch of bumper to bumper traffic right near my aunt’s place. By this stage, the turn off was in sight and we could cope with that. By the way, I’d packed two books by Dodinsky for the trip, and they were done and dusted by the end. Have you ever read Dodinsky? I highly recommend it!

My Dad is one of seven and we celebrate Christmas with his family at my aunt’s place. While you’d be excused for thinking there was no structure or order amongst the throng, our day runs like clockwork. My aunt sets the arrival time and the rest of us operate on our own clock. Yet, we somehow conform to the same routine every year. There are the lunchers, the afternoon tea crowd, the early departures, and the lingerers. Among the cousins, there’s also the turn taking now they’ve got married. My husband’s parents have passed away, so we spend Christmas with my extended family every year. A small Christmas isn’t Christmas to me.

I’m not going to go into a blow-by-blow account of Christmas Day, but there were a few stories worth a special mention.

Firstly, beyond the dinner table, my aunt’s swimmhumouring pool becomes the epicentre of our Christmas. Funny that, because it’s been at least a decade since I last made it into the pool. I did take my swimmers yesterday, which was a step forward. However, for some reason, I couldn’t get in.   Didn’t even try. Although it was a hot day, I seriously didn’t want to get wet. Moreover, I wasn’t too sure about revealing so much of my royal whiteness either. Some things are meant to be left covered up.

However, my kids had a ball in the pool. Two of my cousins do a great job entertaining them every year and there’s loads of rough play, horsing around and they really appreciate their exuberance. Naturally, Geoff and I are always most grateful for this…my parents as well. We are well and truly past all of this and much in need of deck chairs instead.

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My cousin approved the use of this photo.

After all my discussions lately about Christmas traditions, Christmas tree decorations and even Christmas Decoration OCD (CDOCD), I thought I’d share my cousin’s addition to the family Christmas Tree. We’re a creative family and a few years ago, my cousin did a course in making theatrical props. By the way, we’re not talking about making sets out of MDF and slapping on a coat of paint either. I don’ t even know what you call it but he make a few hands  and painted them up and over the years, they’ve found their way into the Christmas decorations. So, I wasn’t surprised to spot the hand at the top of the Christmas Tree this year. Apparently, it’s become tradition. I like that because Christmas can become so stiff and stifled by perfectionists getting it uber-right that it’s tied Christmas up in a straight jacket and has no sense of fun. No place for anybody even slightly lateral-minded. This tree was like a celebration of the individual, being yourself and accepted no matter who or what that might be, and almost giving the judgement crew “the bird”.

I’m proud to be a part of this family with all its flotsam and jetsam where we’re all accepted for whoever we are in all our creative or otherwise glory.

So far, we’ve covered the pool and the Christmas tree and next we’re moving onto the royal splinter.

A splinter? How does a splinter become newsworthy?

Well, when my son is involved, even breathing can easily be turned into a drama of epic proportions. Since he was not the recipient of the royal splinter, there was bound to be some form of “interesting” live entertainment. As he’s now almost thirteen years old, it takes more than a small splinter to get the waterworks going. Yet, oh ye of little faith, there was still plenty of scope for drama. Well, he was actually rather restrained, especially for him but there was still the matter of getting the splinter out and not being at home, this was naturally more complicated. We needed implements…needle, tweezers and we were in luck. After my aunt offered to remove the splinter, we announced “we have two doctors in the house, why am I doing this?” So, the royal splinter, which was a couple of millimetres in length and lodged at the very end of his finger behind the fingernail, was to be removed by my uncle the plastic surgeon borrowing my aunt’s reading glasses. My son was in good hands. This uncle is a plastic surgeon who’s known for reattaching and no doubt detaching all sorts of bits and pieces in very extensive operations. Yet, although the royal splinter was obviously well beneath his capabilities, he approached it with the very same thought and concern. We were given a thorough report and advised to apply antiseptic when we arrived home. It was touching to see my uncle at work and appreciate his bedside manner and compassion. That we’re never too big or too great to help out with life’s splinters with love, compassion and respect.

By the time we went back to my parents’ place for “dinner” and presents we were more stuffed than the Christmas turkey itself. So, all I managed to squeeze and I mean SQUEEZE in was a small slice of pudding, with Mum’s homemade hard brandy sauce and equally homemade custard.

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Aside from the long drive home, Christmas 2016 was done and dusted. Well, we still had a Gingerbread House to demolish but that could wait.

How was your Christmas? Hope you had a great one but if yours was reflective and touched by sadness, I send my love and hugs. Take care.

Love & Christmas Blessings,

Rowena

 

That Christmas Black Rain Cloud.

“There is a little black rain cloud,
Hovering over my Christmas tree.
There is a little black rain cloud
paying too much attention to little me.”

Words adapted by Rowena Curtin  and sung to Winnie The Pooh – Little Black Rain Cloud.

Is it just me? Or, are you also feeling that despite all the joy, Christmas cheer, tinsel and flashing lights, there’s something not quite right with your “Ho! Ho! Ho!” That you’re struggling to squeeze into the spirit of Christmas and it doesn’t quite fit.

Not that I’m all dark, gloomy or in anyway Scrooge or Grinch-like. It’s just that sometimes, I can get really annoyed with Christmas. I don’t know whether there’s a term like “Christmas Rage”, or the “Christmas Depths”, and that’s before I even get to absent friends. Of course, no one likes an empty seat or any form of change at Christmas, even if it is only the discontinuation of Molly O’Rourke’s famous Irish Whisky Cakes 1945-2014 RIP.

Anyway, today I thought I’d just  run through a few of the dark shadows, which can jump out and bite us  at Christmas:

A Few Shadows of Christmas.

Christmas OCD

This describes that desperate pursuit of the perfect Christmas. It’s characterised by that uber-achieving Christmas newsletter, mowed lawns, dogs washed, groomed and teeth brushed; tree with matching decorations, colour-coordinated Christmas clothes. You get the drift.

CDOCD- Christmas Decoration OCD.

This relates to the meticulous selection and placement of Christmas decorations, particularly in the Christmas tree. Generally characterised by having a colour theme and having one decorator in charge, while the rest of the household spectates or evacuates to watch TV.

Ghosts of Christmas Past

No one likes an empty seat at Christmas.

SAD- Seasonal Affective Disorder.

This is where your mood is affected by the seasons. In the Northern Hemisphere, it’s due to the shortened hours of day length. In Australia, it’s caused by excessive sun baking, insufficient sunscreen leaving your skin redder than a Santa suit.

Failure

Christmas is a really difficult time of year to be unemployed, sick, homeless, dumped or even just being your little old self. Having to face family and friends when you’re feeling like @#$% can be the last straw. Been there. Done that. Sort of stuck in this gear and have now acclimatized, but would still love to be a Big Shot or at least get a book published. At this point, even A Little Golden Book would do.

Silent Night

Unfortunately, this relates to so much more than the Christmas carol. There’s the silence of not being able to find your CD of Christmas carols. Then there’s the silence of spending Christmas alone. Worse still, there are those broken relationships where the walls have become so high, that even the Spirit of Christmas can’t get through.

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On a much lighter note, after finishing off my wrapping today, I’m adding Stickytape-Itis to the list.

Does stickytape-itis need any introductions or explanations? Of course not. We’ve all battled to find the stickytape, cellotape or whatever you might call that stuff which sticks to your fingers and just about everything else except the wrapping tape. Meanwhile, the end of the sticky tape goes missing and you’re going round and round in circles like a dog chasing its tail.

It’s enough to drive you crazy and could very well be that tipping point, which pushes a normally sane and sensible person over the edge of madness.

……

So having brought up all these issues, I guess you’re wanting me to come up with some preventative measures or kind of treatment. However, I’m sorry. I’m just the messenger and I have no psychological credentials whatsoever.

However, what I can suggest is letting all the expectations go…just like a helium balloon floating way across the sky until it’s out of sight. This might take a bit of practice, but you’ll soon find out that you won’t die if someone adds a green decoration to your purple and silver themed tree. That it’s not the end of the world when the dog eats your handmade Christmas Cake leaving you nothing but crumbs. That is doesn’t matter if you neither give nor receive Christmas Cards, presents, pudding whatever. I am thankful that God sent us Jesus at Christmas time and I am also mindful that we can’t take the ones we love for granted. That while it might be hard to focus on each other every single day, that we can at least be more conscious of family and friends at Christmas and truly savour the people who mean the world to us.

Life is too short to let anything get in the way of that.

We but not only carpe diem seize the day but also make the most of each other.

Love & Blessings for Christmas and the New Year,

Rowena

PS When it comes to dealing with little black rain clouds, especially ones hanging over our special moments like Christmas, perhaps we should simply borrow cupid’s bow and arrow and shoot the darned thing down. One pop…and it’s gone!

 

The Meaning of Christmas Cake.

Last night, I was making my Christmas Cake.

In case you’re not familiar with what we Australians know as “Christmas Cake”, it’s a boiled fruit cake crammed with sultanas, currants, raisins and prunes soaked and boiled in sherry. The next day, glace cherries and almonds are added to the mix, along with the usual cakey ingredients. It’s very much a British tradition, which has immigrated along with the settlers to the Antipodes.

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Our Lego Santa Loves Christmas Cake.

There are so many steps to making a Christmas cake, each almost being an essential pre-Christmas ritual. So, let’s get started.

The first step is to boil up the dried fruit with the sherry, lemon and orange juice on the stove. If you have never experienced this smell, you are really missing out. As I hunch over the hot stove stirring the fruits with my wooden spoon, all those smells tantalize my senses, heralding Christmas. Indeed, I’d swear my nose was even twitching. Wow! It smells amazingly good!

Then, you leave those fruits in the fridge overnight to stew.

In this era of instant everything, it almost feels unnatural to wait for anything. Yet, this waiting process seems quite appropriate for a Christmas cake. After all, so much about Christmas involves waiting…How many sleeps? Where’s Santa? What am I getting for Christmas?

So, the Christmas Cake is simply being in synch with the rest of Christmas with all its waiting and delays.

The next day, we move onto the baking phase.

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Our son sampling the mixture, aged 3.

This starts out with the ceremonial beating of the butter and brown sugar, watching them spin round and round in my Sunbeam mix master. They’re like two people falling in love and becoming one flesh, as they dance round and round the beaters creaming together. That’s when fingers and spoons invade the bowl for mandatory testing. You’d be surprised how things can go wrong in the beating process, and how multiple tastings are required… just to be sure!

Then, you add the eggs. Even if you deplore Christmas Cake, I guarantee you’ll be licking the spoon once you taste brown sugar, butter and eggs creamed together. Not only do they taste delicious, but they have such a smooth, creamy texture which truly dazzles your taste buds. Yum!

More mixture disappears.

And a bit more!

There’s still plenty left.

Then, even a bit more mixture disappears onto a passing spoon.

Time to add the flour and spices before there’s no mixture left!

Next, I throw in the halved glace cherries and slivered almonds and it’s into the tin. More slivered almonds are sprinkled on top, and the Christmas Cake has finally made it into the oven.

Strange how there’s still so much mixture left behind!

Of course, some of that has been put aside for the mini Christmas cakes I make for my Dad. Dad has a pathological aversion to cinnamon so I always make him his own. My Dad looks very much like John Cleese playing Basil Fawlty in Fawlty Towers. So, it’s a wise move to keep him happy, as we don’t have Manuel on hand to keep him in check.

However, it also seems like such a waste to cook all of that scrummy mixture, especially when it’s only going to become Christmas Cake.

Funny that I could ever deride the sacred Christmas Cake!

How soon I forget! Three years ago, I had a round of chemo to treat my auto-immune disease starting the week before Christmas. Indeed, I literally was singing: “all I wanted for Christmas is chemo” in my head that year. After all, without the chemo, I wouldn’t be here now. So, despite its hardships, it was more of a celebration than an ordeal.

This is where the Christmas Cake enters the story. I had three days’ notice before chemo began and do you know what I did in that time? I made my Christmas Cake and I posted my Christmas cards. That’s what was important…along with my family.

I had to remind myself of that this year. Now that the pressure’s off and my health has vastly improved, making the Christmas Cake wasn’t quite happening. Indeed, I only made it last night with 6 sleeps to go. I was really struggling to get myself moving!

That’s also because I’m not a huge lover of fruit cake. Indeed, if it wasn’t for Christmas, I’d never make any kind of fruit cake. I much prefer chocolate cake and have been known to mix the boiled fruits in with a chocolate cake mix before. That was yum! The boiled fruits also mix in well with ice cream. Indeed, the boiled fruits can be very versatile, if you’re willing to let go of tradition heading into the great unknown.

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Photographed with Santa aged 6. Unfortunately, the photo needs a spruce up.

I’m not quite there yet. I still need a slice of Christmas Cake with my cup of tea and my parents particularly love this Christmas Cake. After all, I make my mother’s recipe, which she adopted from her university friend Deirdre. They go back a long way and so does this Christmas Cake. I’ve been eating it for something like 47 years now. It’s a keeper and I hope my kids continue to  make it wherever they are and whatever their world is like when they grow up. Who knows where they’ll be in 47 years? Yet, like any parent, I just want them to be happy (which is often the most elusive “achievement” of all!)

You can find the recipe and a previous post about the Christmas Cake here.

You might also enjoy reading about Christmas Cakes: here. I found it a very interesting read.

Do you have any Christmas baking traditions? If so, I’d love to hear all about them and feel free to share your recipes.

Love & Christmas Blessings,

Rowena

Accessing Schools Spectacular.

Last Saturday night, our family attended the NSW Schools Spectacular held at Qudos Bank Arena, at Sydney’s Olympic Park. Schools Spectacular is the largest variety show in the world and features students from NSW Public Schools and guest artists. Our daughter was performing in the 3,500 strong mass choir and I was really looking forward to a fantastic night out.

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However, as a someone living with disability and chronic illness, I naturally had some reservations. Large crowds throw up all sorts of unpredictablities  for me. It doesn’t take much for a simple fall to have major consequences…a broken foot a few years ago being case in point.

However, despite these hazards, I carpe diem and seize the day. I get out and about and I would move heaven and earth to see our daughter perform.

There were simply concerns about THE HOW and that meant reducing all the unpredictabilities. It’s not rocket science. It’s just like making sure you pack a water bottle on a hot day. However, I usually have a lot more variables to consider and most of them are unpredictable. We have to think on our feet.

That’s also because I’m on my feet using a walking stick, not in a wheelchair. I thought I’d better point that out because it makes quite a difference to the types of accessibility problems I face.

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The Finale.You can feel he electricity, can’t you!!

As much as we all loved and enjoyed the performance and can’t wait to see it all over again on TV next weekend, we did experience some difficulties accessing and leaving the venue.  After trying unsuccessfully to have my needs accommodated at the time, I’m sharing my experiences with a view to implementing change through greater community awareness. After all, people living with disability and chronic illness are entitled to a fun night out, without needing to advocate for disability access rights!

To give you an idea of what it is like for a disabled person with a walking stick to attend a big concert, I thought I’d hobble you through the highs and lows of our evening.

Starting out with the positive, I have a companion card. This entitles me to a free carer to accompany me to a huge range of venues. This meant that as my companion, my husband’s ticket for School Spectacular was in a sense free. However, it also meant that he was also his wife’s keeper and he was on duty  (Confirmation that there’s no such thing as a free lunch!).

Secondly, we were able to get subsidised disabled parking a short walk from the venue. I can’t overstate how having a Disabled Parking Permit opens places up for me. Of course, it’s great to be close to the venue. However, that proximity also reduces unpredictabilties, producing something of a protective bubble. There’s still that element of risk, but it’s much reduced. This allows me to lead something close to a “normal” life.

However, on the down side, despite having the Companion Card and disabled parking permit, I was deemed capable of queuing up with the crowded throngs to get through the security check. Given that the show had 5,000 performers, the crowds were phenomenal. So, we’re not talking about a trickle. Such crowds pose a genuine risk to my physical safety and my concerns have nothing to do with being “anxious”!.

I politely asked the ticket office about disabled access and was told that everyone had to go through the security checks. But I wasn’t asking to by-pass the security checks. Nor would I want anyone to by-pass them. Obviously, they’re critical. However, there should have been a way for people with disabilities to by-pass the queue and go straight through the checks. I was using a walking stick, had a Companion Card and a Disabled Parking Permit.  So, these people at the ticket office knew I wasn’t well. They could’ve walked me to the front of the queue and helped, but instead they stuck to their officialese.

That’s when I donned my political hat. Not because I couldn’t wait for the queue to die down or take my chances in the crowd. I did it because there should have been decent disability access. Somebody needed to speak up for those who can’t or struggle to speak up. I clearly expressed my right to disabled access and was bluntly told the queue was the only way. I spoke to the supervisor and received the same rule-driven response.

Of course, I was the problem!

We were naturally unimpressed (read understatement!!)

However, very soon our experience dramatically improved.

Having made it through the security check, I confronted a metal turnstile and wasn’t feeling comfortable. This time the staff member asked me if I could get through and guided me around the turnstile. My husband and I almost hugged him, thanking him profusely for his attitude. It was such a welcome contrast to the people at the ticket office who had their rules, which clearly made no allowance for disabled people.

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So far so good. We made it to our seats and really enjoyed the performance. It was superlatively sensational and we want to thank and acknowledge all those beautiful performers, the teachers, and everybody who put so much into this incredible event. In no way do I want my concerns about disability access to lessen what was a truly unforgettable experience.

Naturally, after the performance was over, we had to get home.

As I said, we had a very convenient Disabled Parking spot. However, we hadn’t anticipated that being on level 1 would make it incredibly difficult to exit the car park with all the cars pushing down from upper levels. While there is a sign warning that it takes an hour for a full car park to empty, for many people living with disability or chronic illness, that’s a very long time…especially if you’re stuck in the queue for an extended period.  There are seriously disabled and chronically ill people who can’t wait around in a car park for an hour to exit. These families live on a very short piece of string and need to get home like a bat out of hell.

As we were parked right next to the toilets, my husband decided we were better off waiting and staying put rather than getting stuck in the stationary traffic stampede. This gave me a chance to watch the panicked pandemonium. It was like someone had yelled “FIRE” and everyone had to get out immediately, right now and the thinking part of their brains was definitely switched off. At one point, we saw people converge on one exit point from five different directions, which clearly wasn’t “legal”. Drivers behaved like crazed maniacs in a case of:  “Just get me out of here. I don’t care about anyone else.”

While I was watching all of this, I came up with an idea.

What about if the people with Disabled Parking Permits were allowed to leave first and other motorists had to give way?  It would probably cause an outrage, but it wouldn’t hurt most people to wait an extra 15 minutes or even half an hour. However, knowing we could exit a venue quickly would provide seriously disabled and chronically ill people with much greater community participation.

What do you think?

For our family these recommendations also have further application. My Mum had bought a ticket to the lunchtime matinee concert but seriously put her back out and couldn’t attend. I’d actually encouraged her to have a go, because I thought the venue would help us find a way. However, I’m glad she stayed home because it would’ve been too much. She would’ve needed a lot of extra support and as much as catering for one little girl’s Grandma isn’t much to ask, that crowd was brutal and to be fair, she’s nowhere near well enough.

My intentions here are not to criticise or throw stones but to raise awareness. Let you travel in our shoes for a night and open your eyes to our struggles. Before I became aware of my own disabilities, I never thought about such difficulties either. I was young and only thought about number one too. However, all I ask is that you open your eyes and respond from your heart, instead of your rule book. Have compassion.

I am not talking about making huge changes, but together we can move mountains. Not just these mountains, but all sorts of mountains which make it harder for anyone to fully participate in the seemingly simple things of life.

Okay. So where’s your shovel? Let’s start digging!

xx Rowena

Further Reading
Here are some other posts about living with disability:

Beyond the Flow: A Wheely Good Night at the Opera House

Beyond the Flow: Forgiving the Unforgivable (your chronic illness).

Living in a limited world: NHS Cruelty

Dancing to the Stars

“Come Fairies, take me out of this dull world, for I would ride with you upon the wind and dance upon the mountains like a flame!”

William Butler Yeats

A few weeks ago, I booked myself into an adult ballet class. The classes are being held at the dance studio my daughter attends. While taking up ballet again as an adult sounds crazy, it actually felt like a natural progression…the next step. After all, I’ve been driving my daughter to dancing for 6 years, and after years of being the spectator and observer, why can’t I have a turn? Why can’t Mummy get out of her taxi and spread HER wings?

Ameliabest

Our Dancing Queen

Dance in body, as well as mind, because I’ve been putting myself in other people’s dance shoes for years and even dance in my dreams. I borrow the best too…like a cuckoo moving into another bird’s nest. That way, I can almost reach the stars with my pointed toes, without even leaving my seat.

Amelia ballerina

Beach Ballerina

Yet, my time has come. After waiting in the wings all these years, I had to step out of Mum’s Taxi. Grab the bull by the horns and carpe diem seize the day. Shift gears from 1st position into 4th and even attempt a pirouette!

Watching was no longer enough.

As many of you can no doubt appreciate, taking action can be a huge thing for a writer. I suspect it could well be in our wiring, but we’re used to being the observer. Sometimes that’s because we’re in a support role, but I also know fear and a crippling sense of failure hold me back. So instead of doing, I write about it instead. Sound familiar? It’s great fuel for my writing, but you can end up living a second-hand life. Keeping your wings folded, never learning to fly even though you could.

However, all this positive thinking is only one side of the coin. The flip side is equally convincing.

Looking from a logical standpoint, me returning to ballet was ludicrous, ridiculous, stark raving mad. I have multiple disabilities and even struggle to walk along a footpath. I broke my foot last year walking on grass. So, how could I ever expect to dance? Added to all of that, I recently turned 47 so I’m no spring chicken.

Rowena

I had infusions of IVIG every 3 weeks for five years.

Bearing this in mind, I set the bar low and decided that even if I spend the classes sitting in a chair, if I can just hold my hands like a ballerina, I’ll be happy.

Yet, with so much stacked against me, I did have one ace up my sleeve. I’ve been watching ballet for 6 years and as a photographer, I don’t just watch, I absorb. I’ve been intrigued watching their bodies move in ways I could only ever dream about… setting their bodies free from all sorts of limitations, inhibitions and actually leaving the ground. Now, that my body struggles to move, I really know what that means. I appreciate being able to move, in the same way you savour that first day of Spring after a long bitter Winter. It’s pure joy and I take nothing for granted.

“And those who were seen dancing were thought to be insane by those who could not hear the music.”
Friedrich Nietzsche

After years of sitting on the sidelines, I recently noticed that I was enthusiastically tapping my foot in my chair and that the other parents weren’t necessarily tapping…only the dancers. Slowly but surely and through shedding years of being told I’m “unco” and believing dancers were wafer thin and very young, I felt there was a repressed dancer hiding inside. A dancer longing to come out of her cocoon in a safe, nurturing environment. That I was meant to dance.

Ha! Not that long ago, I even joked with the Principal that instead of being a DANCER, I am DANGER.

So, you get my drift.

So, what with all of that stacked against my dancing career, I didn’t tell my parents what I was up to and I joked about it with a few close friends in the same way you might announce that you thought you could fly to the moon.

rowena piano

Playing Moonlight Sonata after chemo.

Meanwhile, as I waited for the classes to begin, the doubts set in. Rather than feeling like a risk-taking explorer, I felt like I’d well and truly crossed over to the other side of crazy this time. You probably know the line:”But I’m not crazy, I’m just a little unwell” from Matchbox 20’s hit “Unwell”, but you might not be so familiar with these lines, which sum up my apprehensions so well:

I’m talking to myself in public
Dodging glances on the train
And I know, I know they’ve all been talking about me
I can hear them whisper
And it makes me think there must be something wrong with me
Out of all the hours thinking
Somehow I’ve lost my mind.

Matchbox 20

Yet, this is the same person who plays the violin and skis, even if I don’t walk that well.

Rowena skiing downhill Fri

Skiing down the mountain at Perisher in August 2013.

Perhaps, walking is too pedestrian for me and I’m actually meant to fly:

“He who would learn to fly one day must first learn to stand and walk and run and climb and dance; one cannot fly into flying.”

Friedrich Nietzsche

So, tonight I finally headed off for my adult ballet debut…barefoot in concealing attire. I was thrilled my friend also signed up and we were embarking on this madness together. There were a couple of blokes in the group too. So, we were quite a motley crew. That was a truly special thing, because as our teacher pointed out, you don’t have to be a particular build, shape, gender or age to enjoy ballet. Ballet is for everyone.

“Every savage can dance.”

Jane Austen

So, how did I go?

Well, I could remember the basic positions… just like you never forget your times tables. However, as I stood in 1st position for possibly the first time since I was 11 years old, it didn’t feel like it used to. My legs have changed and it all felt odd, unfamiliar with no muscle memory whatsoever. On the bright side, while the movements felt strange, I can now understand the French ballet terms better than I used to…not that speaking the language necessarily translates into being able to keep up with the steps. Or, perhaps it does because I did keep up most of the time. Holding onto the barre, I pointed my foot, moved my arms, and dared to dream that the clumsy ducking could become a swan.

So far so good.

Yet, just when I thought it was time to go home, Miss Bronwyn mentions “pirouette” This is a term which eludes my French, but I know it means trouble. It all starts off with needing to focus on a spot on the wall and then turning your head and your body while moving your foot up near your knee, like a stork. I did try turning but at this stage I’m just focusing on the feet and keeping my balance.

So, I not only survived my first ballet class, I came home feeling exhilarated, fluttering with excitement and feeling frustrated that I have to wait a week for my next class. I am hooked. Not only with the joy of dance, but also experiencing the thrill of conquering so many boundaries and limitations. I even reacquainted myself with my inner hero. Great to know she’s back.

Now, I’ve got to get on with my homework. We need to practice our heel rises so we can be ready to jump.

Jump?

What the? The Castle’s Darryl Kerrigan had it right:“Tell her she’s dreaming”.

Yet, now I’ve stepped out, there is no turning back.

I will be dancing my way to the stars!

Have you ever tried something out of your league and found a missing piece of yourself? How did it feel?

xx Rowena

 

 

 

 

Wet Weekend Coffee Share 5th June, 2016

Welcome to another Weekend Coffee Share Australian Style. That means it’s Winter here and we’re thinking Hot Chocolate, although I’m currently drinking tea.

What are you sipping on? No doubt, many of you are trying to quench the Summer heat with a long, Iced Tea.

Autumn Leaf Palm Beach Sydney

Autumn Leaf, Pittwater, Palm Beach, Sydney

Personally, each season has its own character and beauty. Summers I love the long extended hours of sunlight and going to the beach at the end of the day. Autumn…I usually appreciate relief from the stinking hot Summer heat and the occasional flash of stunning Autumn colours. Winter is a time of hibernation, rest and restoring the soul before events take off again in Spring. Spring…it’s great to see the sun again and enjoy a bit of sun before it gets too hot. I enjoy other people’s gardens.

Spring and Autumn are my favourite seasons and Autumn edges out in front. I love those stunning Autumn leaves with their kaleidoscope of reds, oranges and yellows which glow like nature’s stained-glass windows backlit by the sun.

If you’re joining me this weekend, then you’ll need a good raincoat, gumboots, umbrella and a bit of pluck and courage to take on the heavy rain. That is, unless you’re a duck.

It seems like someone’s upended the heavens and that great swimming pool in the sky, is falling down. Still falling down. There have been dangerous, surf conditions, localised flooding and absolutely no incentive for heading out. For us, that’s been limited to driving the kids around. We’re no longer that interested in chasing the bright lights. Too much hard work…especially in the rain! The Georges River in Southern Sydney has burst its banks, along with the Wilson River in Lismore. As it’s flat around here, I’m sure there’s some localised flooding but we’re fine at home.

Last Thursday, I had my first job interview in around 4 years. It’s a one day a week job at my daughter’s school working in community liaison. I’ve done this type of work before but I haven’t seriously returned to paid work after having chemo two years ago. I had my last job for 5-6 years and so it’s been a long time since I’ve been through the interview process. Even if I don’t get the job, I am pleased with how it went and how I came across. These days, I’m more concerned about finding the right fit, than having to push the proverbial uphill to “make it work”.

I find out if I’ve got the job tomorrow, which may mean I’m pulling my old business-self back out of the closet during the next week. I am quite used to dramatic changes around here but as I was sorting out Summer and Winter clothes this afternoon, I was consciously aware that those business clothes might need to be moving centre stage…yikes!

This brings me to today’s job…sorting out our Summer and Winter clothes and boxing the Summer clothes up and having some snug woolly jumpers to wear, instead of needing a dog on my lap. Well, make that in addition to to dog!

Speaking of dogs, Bilbo has parked himself right next to my chair and his nose is almost on the laptop. You see, I’m eating a Vegemite sandwich with my cup of tea and dogs LOVE Vegemite. Lady, who as second fiddle has to sit further away, is lying on the floor just as keen but more of a sleeping assassin.

Van Gogh Sunflowers

Sunflowers – Vincent Van Gogh.

With all this rain, I’ll need to hang up my latest art acquisition: Sunflowers by Van Gogh. While other fools have forked out many millions for their Van Gogh, I picked mine up at the charity shop for $20.00. It might be a print but those sunflowers are still smiling at me and spreading their much needed cheer! Just what I need with the gloomy wet outside! Read more here.

By the way, my weekly flash fiction also fitted in well with all this  rain: A Rainbow In The Sky

How’s your week been ? Hope you’re all doing well.

Thanks for popping by! This has been part of the Weekend Coffee Share hosted by Diana at  Part-Time Monster . You can click here for the linky to read the other posts.

xx Rowena