Category Archives: Chronic Illness

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

 

Breakfast With Rabbit & Julie

This morning Mum’s Taxi was on a mission. Dare I say, it was on a quest of epic proportions.

You see, our local radio station, Star FM, was broadcasting from my daughter’s school and we I was going to meet the hosts, Rabbit and Julie.

Sorry, Rabbit. As much as I love you and I truly thrive on the banter between you and Julie every morning, I was there to see Julie.

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“Yoo hoo! Julie! Rabbit! Look at me!”

I know that being a crazed, obsessed fan can be frowned upon. It’s not like the good old days when Davy Jones kissed Marcia Brady and she swooned: “I’ll never wash this cheek again.” Even if we laughed, we understood and such undying adoration wasn’t considered “odd”. These days, this kind of uber-fanaticism can land you in jail. Or, at best, you’re at the top of the suspect list if anything ever happens to your star…your guiding light.

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At least I didn’t  go to these lengths to get Julie’s attention. (The breakfast was supported by Poppy’s Pretzels…a great prop.)

However, at times, my enthusiasm gets the better of me, overtaking all restraint, decorum and anything approaching “cool”. Although I didn’t call out: “Yoo-hoo, Julie?!! It’s me!!!” while they were on air, I was a bit OTT (over the top).  As my daughter would attest, I am THE embarrassing Mum, but hopefully in a warm, infectious kind of way. At least, I hope that’s how my manic desperation to meet Julie Goodwin came across this morning.

You see, Julie and I go way back.

I first “met” Julie back in 2009 when she won the very first Masterchef Australia. It might have been eight years ago, but I still remember hanging out for the results. It was almost like waiting to hear who was going to host   the 2000 Olympic Games: “The winner is…”

What I liked about Julie back then, was just how unashamedly real she was and how she oozed personal warmth and love. Although, despite my best intentions, I’ve only used her cookbook a couple of times, I’ve felt her beside me through the last eight years, while I’ve been cooking meals for my family. Moreover, I’ve also talked to her in my head, when the kids’ their meals went untouched and she helped dull the rejection.

This is a form of rejection nobody prepares you for as a parent, and it’s very difficult not to take it to heart. Of course, your child isn’t simply rejecting their meal. They’re also rejecting your love. After all, we all know that a good dose of love goes into everything cooked at home.

Food rejection was and remains a serious issue with our kids. While the rest of the known universe is focused on reducing childhood obesity, my kids have been non-eaters. People would reassure me and say: “I’ve never seen a child starve to death”, but they weren’t the ones with a child struggling to stay in the 10th percentile for weight and about to pass out after school…and still not eating!

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I thought Rabbit & Julie might want to try one of my daughter’s glow in the dark birthday cookies. Then again…

As time went by, we found out our son was lactose intolerant and our daughter has gastroparesis. This slows her digestion and she doesn’t get so hungry and gets a lot of stomach pains. I also found out that both my kids are sensitive to food textures. They don’t like mushrooms as they’re slimy and don’t like “bits” in their food like sultanas either. I hadn’t really thought so much about the texture of food before, but I do now.

Back in those days when I had no idea what was going on, I thought about writing to sales guru Anthony Robbins, who could sell ice to Eskimos. See if he could get my kids to eat. Find out how he’d respond when: “Choo! Choo! Choo! Here comes the train!” doesn’t work. I truly wondered whether my kids would be his undoing. The only humans Tony Robbins hasn’t been able to budge.

Being a parent can get very lonely, especially when you’re battling something weird and unexplained. When other children need to lose weight but yours won’t gain, it does throw you. Moreover, with skinny being associated with beauty, its associated health problems can fly under the radar. At least, that’s until you hit the teenage years.

So through all of this, I’ve fiddled with food. Tried new recipes and I’ve even been teaching the kids how to cook for some time.

Julie Goodwin has been there beside me through all of that, patiently listening as I ramble away in my head or even have a full-on rant. And you know what, Julie never complains or criticizes. Indeed, there’s only been one downside…Julie’s never turned up at my door with a meal!

By the way, I should also throw in that while my kids weren’t eating, I was chronically ill and at times, fighting for my life. Through many of those years, being able to cook for my family was a luxury and nothing was taken for granted. Indeed, friends and people from Church helped us out with meals and so much more. So, the fact I was struggling to prepare the meals the kids refused to eat, really did add fuel to the fire…”Not happy, Jan!!”

When you’re living with chronic illness day in day out, those voices on the radio can provide some kind of salvation. I might not have had the energy to go out for a chat and catch up with friends, but I could listen to Rabbit and Julie.

By the way, there’s another little detail I wanted to share. If you were sitting in the back seat of my taxi, you’d hear that Julie and I have a very similar, beautiful yet unrestrained laugh. Our laughter ping  pongs back and forth at each other in my car, and I’m quite surprised the roof hasn’t blown off. You could say we don’t have the quietest laugh and when you times it by two, I’d say it’s infectious but others might day something else if you could hear them over the din.

Every morning, this laughter is life changing and the best exercise or therapy anyone would ask for. So, I thank Rabbit and Julie for that.

Moreover, I’ll just footnote that by saying that you never know how you might be impacting someone’s life and how easy it might be, to be that difference.

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It also says to me that if you are having a tough time or have simply been overwhelmed by the black dog, do something to help yourself feel better. Find someone, something which will help you laugh even if it is only for a few minutes while you’re driving along. Turn your radio on.

After all, a huge life lesson for me has been that it’s not just what happens to you, but how you choose to respond. That might not make immediate sense and you might find yourself saying but you don’t know what I’ve been through. You might even start going through “your list”. Well, I’d be recommending you throw that list out and start a new one… “The how am I going to get myself out of here list”.

It will be very empowering and the victim will become victorious!

Bring it on!

Is there somebody who brings a sparkle to your day? Please share!

xx Rowena

 

 

The Motivational Speaker…Friday Fictioneers.

Amanda started typing…

“You can wrap your children up in bubble wrap. Do your utmost to keep them safe. Give them the best opportunities. Yet, that doesn’t help when your child’s greatest enemy is themselves.”

Amanda deleted that last line and returned to the drawing board.

No! THAT girl wasn’t her daughter but a thief…an alien intruder.

Is this what they meant by “mental illness”?

But, if it wasn’t her, why wasn’t it gone? And whatever happened to victory?

Amanda slammed her laptop shut.

How could she give anyone else the answers, when she only had questions?


This has been another contribution for Friday Fictioneers. This week’s photo prompt was provided by © Liz Young

This is a serious subject brought on by this week’s photo prompt. Most of us know and love people affect by the black dog or whatever you care to call it and know the difficulties and near despair trying to be there and keep loving no matter what. My heart goes out to you. Let’s hope love will ultimately triumph.

After reading a few of the comments, I was reminded of a humble Sydney man who has prevented many suicides at a notorious Sydney suicide spot, The Gap. He lived across the road and simply approached people and invited them over for a cup of tea. Here’s his story: The Angel of The Gap

Good to finish this very hard-hitting story off with a bit of hope and empowerment. We can make a difference!

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!

 

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