Tag Archives: dermatomyositis

Our Tenacious Little Dancer.

“I think she is growing up, and so begins to dream dreams, and have hopes and fears and fidgets, without knowing why or being able to explain them.”

Louisa May Alcott

Today, our beautiful daughter suddenly grew a couple of inches taller when she stepped into her very first pair of pointe shoes and she was up en pointe. This has been something she’s been aspiring towards ever since she first started ballet as an almost four year old eight years ago. Indeed, I remember a time when she was very small and she stood in a couple of plastic cups to get the look (and a bit of added altitude). In hindsight, I probably should’ve got those cups off her feet and been more safety conscious. However, she was so happy, and it was too good a photo opportunity to miss.

In typical Rowena fashion, this pointe shoe fitting demanded a bit of pomp and ceremony. Indeed, quite frankly if she wasn’t twelve years old, I would’ve popped the  champagne, even though I’m not that partial to the taste. Even as a child, I was mesmerized by the theatre of it all what with popping the cork and all those bubbles shooting out like stars across the room with unbridled joie de vivre. Bubbly encapsulates the excitement, the celebration the exquisite preciousness of the moment in a way that nothing else does. You don’t even need to drink the stuff.

However, instead of a champagne celebration, we met up with my Mum for lunch and coffee and then the three of us headed off to Bloch’s for her 3.00pm appointment. By the way, our daughter wasn’t the only young dancer who had to get that very special pair of first pointe shoes on the very first day of the school holidays. The fitter had been flat out all day and we were something like her 11th fitting. Yet, she seemed just as excited for my daughter and for us as the first. As a dancer herself, she knew what this moment was about and really helped to make it special and informative. If there’s one thing I now know about pointe shoes, it’s not to get them wet. I also confess that I’ve also seen my daughter’s feet in a new light.

Helping en pointe BW

We really appreciated the care and assistance we received at Bloch’s Hornsby with the shoe fitting. Naturally, the staff are dancers themselves and I felt that our fitter was handing down the mantle to our daughter. They actually gave her a certificate. She’d joined the club.

Our daughter has been learning ballet for eight years now and she’s worked very hard for the last 12 months doing all sorts of stretches to prepare her feet and toes. Indeed, she needed to have a physio consultation before she could go for her pointe shoe fitting. By that stage, her teacher already knew she was ready. However, she likes her students and a parent to be aware of the physicality of ballet and how the muscles bones and other bits and pieces come together to to produce your swan. Through being more conscious of this physical element and looking after your body, dancers can help prevent injury, wear and tear. Given the difficulties I have with movement, I have appreciated these physical realities through a different window, which has given me an insight into the physical demands of dancing. That it isn’t only about costumes, makeup and hair. After all, injury and being on the sidelines is not just an inconvenience for a dancer. It can mean The End, or simply the end of  dance as they know it. When dance is your passion and raison d’etre, that can feel like surviving your own death. (I’ve gone through that with my own battles.)

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There was so much to learn at her fitting and you can see here that Miss is very focused taking it all in. She hasn’t been swept away by the excitement of it all.

For every young dancer along with her birth and dance families, getting their first pointe shoes is rightly an incredible achievement and time for celebration. While you might see those beautiful pink satin pointe shoes and immediately think of the likes of Degas and his dancers and the professional stage, these young girls are still within cooeee of being the “awkward duckling” who started out. There were no guarantees back then and for us, there were  certainly no expectations. I just dropped her off for her first class and the mysteries of dance went on behind closed doors until open days or the concert. From where I sat, ballet was just a part of childhood for a little girl. A bit of fun. An activity. It had nothing to do with my dreams, unless it came to taking her photo. Now, that was something I understood.

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Edgar Degas, The Little Dancer. She reminded me of my daughter until I found out she was quite distorted.

Although I wasn’t so conscious of this at the time, seeing Miss in her pointe shoes really brought home what we’ve all been through to get her there. I don’t think anybody’s road is easy, but everybody’s road is unique with their own particular reasons why getting into those pointe shoes is a personal miracle and a triumph over adversity. Most of you will be aware that I live with a life-threatening auto-immune disease which affects my muscles and lungs. However, Miss has a rare digestive disorder called gastroparesis, which particularly flared up a few years ago and she was barely able to eat. Indeed, she was struggling to get to school or to ballet and she missed months of classes.

Amelia at the san

Miss in hospital waiting for her endoscopy. So brave but she also loved having her own remote control TV!!

As you could imagine, it was very difficult to know quite how to manage the situation. We were very concerned about her actual health and it would’ve been quite a logical decision to cut out dance to focus on her schoolwork. Yet, we’re fighters. We might be holding onto the cliff face by our fingertips and kicking and screaming, but we don’t give up. Indeed, it was only after missing a couple of terms and feeling like all my motivational strength had run out, that I truly started thinking it was time to pull the pin. Her teacher was also very patient. However, dancing is a team sport and it’s hard to manage a team on three legs. So, with the end of year concert rapidly approaching, it was crunch time. As a possible way forward, her teacher suggested that her friend came over and they practice the dance together. I’m so thankful because her friend saved the day. That was the turning point. She picked up the dance. Was in the concert and was back on her dance feet again. Then, the following year, she had a friend at her new school who was a passionate dancer and she also a tremendous encouragement. By the end of that year, Miss decided to audition for Dance Team at the studio and was accepted. She hasn’t looked back and with the incredible training and support from her teachers, is growing from strength to strength. Clearly, with all these dance angels working flat out with her on multiple fronts, our daughter must’ve been destined to get up on those pointe shoes today. It’s been a real team effort.

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Afternoon Tea.

By the way, while we’re talking about life lessons from the road, organization has been another hurdle. While other girls have managed to get to class with a perfect ballet bun and all components of their uniform, all too often Miss could only find one ballet shoe and her ballet bun could well have been reinterpreted as a bird nest of its own unique variety thanks to her superfine hair, where getting the knots out produced spine-chilling screams. Yet, somehow or another, all of this has mostly become a thing of the past.

After explaining some of the hurdles we’ve had to overcome, perhaps you’ll understand why I thought this moment might never come and the tears of joy I held back while we were there as I felt like the happiest Mum alive. Back when our daughter was struggling, I remember seeing a group of older girls who’d just got their first pair of pointe shoes. They were exuberant and clearly this meant the world to them not only as individuals, but as a group. I felt so privileged to catch a glimpse through this keyhole and get an insight into just how important this moment is to a young dancer and what it would mean to my girl. Whatever happened with my daughter and dance, I wanted her to hang in there at least until she’d gone en pointe and  been a part of that bubble. Not for me, but for herself. I could could sense something in her soul, which is becoming more apparent with every passing year. Dancing is her thing. It isn’t her only thing but it lights her fire.

So, now we find ourselves at a new beginning. Once she goes en pointe, she has to learn to dance all over again. Although it is tempting to try to fast forward and think about where all of this is heading, he’s only 12 years old. The world is her oyster and there are still so many forks in the road. She doesn’t need to choose one yet. However, it can be difficult to maintain a balance and keep an open mind when you fall in love with such an alluring juggernaut that you could easily sell your soul to dance in ballet’s fire. Somehow, we just need to keep a level head and maintain a balanced path…at least for now.

After the fitting, she went to stay with my parents for the week taking her beloved pointe shoes with her. If they weren’t so precious, it wouldn’t surprise me if she slept with them under her pillow or close to her heart. They meant the world to her and I’m so proud of her for all she’s overcome, her hard work, dedication and most of all her passion for dance. I am also very grateful to all the people who have helped her along the way, her teachers, my parents but also very much her friends who have been so supportive and encouraging and that’s not something you hear much about in the dance world. She has some incredible dancing mates.

That is also why I am sharing our journey via the road less travelled for our daughter to get her pointe shoes.  That parenting isn’t all about bragging rights and showing off about your kids’ talents. It’s also about sharing about the hurdles and difficulties so other girls don’t give up along the way because they feel they don’t measure up. Aren’t good enough without giving it all they’ve got. I belong to the Muscular Dystrophy community and not everyone can get up on pointe shoes or dance in a conventional sense. However, that doesn’t have to stop you from finding a way. Indeed, I’ve done some adult classes myself and have my own pair of pink satin ballet shoes. I think it helps to understand that you’re not the only one who might be going through difficulties and wondering whether to persevere with dance or whether it’s all worth it. No one else can answer that on your behalf. However, we are meant to encourage each other and dance is such an exhilarating experience. It’s worth fighting for.

Do you have any dance stories you would like to share? Or, a story of triumphing over adversity? I’d love to hear from you.

Best wishes,

Rowena

PS I have a strange sense of humour. However, after hearing about how her pointe shoes have paper mache in the toes and are very sensitive to moisture, including sweaty feet, I found I found a great deal of humour in this quote:

“Growing up, I had only one good pair of shoes. So on rainy school days, my mom would slip plastic bread bags over them to keep them dry. But I was never embarrassed. Because the school bus would be filled with rows and rows of young Iowans with bread bags slipped over their feet”
Joni Ernst

So, if you see a dancer with plastic bread bags over er pointe shoes, you’ll know that’s our daughter!

Dealing With Characters in Non-Fiction.

Not every writer aspires to write a novel. Although I have stumbled into a passion for both writing and reading flash or bite fiction, my book-writing aspirations focus almost exclusively on writing non-fiction.

By non-fiction, I’m not referring to something along the lines of memoir and motivational writing. However, a few years ago, I stumbled upon some gripping stories through my family history research, which were writer’s gold. You know, the sort of stuff which could easily be described as “the Big Bang”.  After all, as the saying goes, “fact is often stranger than fiction”.

Anyway, after having yet another monumental tussle with a character this week, I thought I’d share a few peculiarities I’ve encountered dealing with characters in non-fiction.

Obviously, the very clear distinction between developing characters in non-fiction, is that your characters are or were real people. They’re not products of your imagination, even if they were inspired by real people.

This places certain limitations on how you construct and develop your character. For example, you can’t just make up where they lived, their occupation. Moreover, something real has happened to spark the story in the first place. So, as the author, you’re not really in command of character development or plot. Indeed, you’re role is more that of a meticulous restorer, than a designer.

Using the Proust Questionnaire.

This is where turning to the Proust Questionnaire can be particularly helpful, as it allows you to focus on and bring out the idiocyncracies of your character. It poses a series of questions, which may be used to “interview” your character. Here’s a brief snap shot, which was taken from the Vaniety Fair version.

1.__What is your idea of perfect happiness?

__2.__What is your greatest fear?

__3.__What is the trait you most deplore in yourself?

__4.__What is the trait you most deplore in others?

__5.__Which living person do you most admire?

Character Have Limitations in Non-Fiction

Clearly, with your characters being real, this places all sorts of restrictions and limitations on how you can develop your character if you are trying to be truly authentic, rather than using a real person as a launching pad into fiction.

With the pieces I’m currently working on, I’m trying to be as authentic as possible. Indeed, I am in effect being, in effect, more of a restorer, than a designer. I’m working with my tweezers and magnifying glass to get those little details right, and yet at the same time, using a broad brush to create suspense, action and all the usual tools that you usually use to make a story worth reading. After all, a reader has no obligation to read anything we write, and there has to be an exceptionally good reason for them to even read the title, let alone the opening page. The days of readers bowing and scraping to the almighty author are long gone. We are the ones who need to get down on our knees and thank the reader. Be thankful they gave us their precious time.

Meticulous Research, Minimal Use.

This is why you don’t want to burden your reader with too much detail, even though you may have volumes of research. They should only see the tip of the ice berg. That’s not to say you don’t need the ice berg, but the reader is also interested in the other bells and whistles. You need to know your stuff. They need to know you know your stuff, but they don’t want you to regurgitate it all over them.

There is beauty in simplicity, something I’ve been appreciating more and more through writing and reading flash or bite fiction. A well-chosen object, piece of clothing, or even the use of language, speaks volumes. You don’t always need to write a novel.

Best Guess is Good Enough.

Another challenged I faced writing non-fiction, was working out about how to fill in the gaps. There’s stuff I don’t know. Can’t find out. Making things up bother me. Was it lying? However, I don’t believe there’s any harm in a best guess scenario. After all, the lines between fact and fiction are really quite blurry once you look into them. There’s always an overlap. Well, at least, that’s my humble opinion. I certainly wouldn’t call it “lying” or “fabrication”, and I am fairly fastidious about getting historical detail right.

The Character Drives Plot. The Author is the Passenger.

This week, I struck a another challenge peculiar to writing non-fiction. You are not writing or making up the plot. Rather, your character is in charge, and doesn’t care whether their next step is going to scuttle hours of work, and your entire philosophical position. No. They just do what they like and all you can do is structure and arrange facts and events, through your own editing lens.

The project which brought this to light, was actually my family history research. While I have been developing a series character sketches, which I’ve been posting on the blog in preparation for a book, I actually had nothing to say about my 4th Great Grandfather, John Johnston. I couldn’t find anything.

Plot is Unpredictable

However, after 20 years of passive research, I found out John Johnston was convicted of bigamy in New Zealand in 1864. Indeed, not only was he still married when he married my 4th Great Grandmother, Maria Bridget Flanagan. They even had four children, and it wasn’t like they weren’t living nearby either.

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This could well be John Johnston approx 1886.

As you could imagine, this changed a lot of things. Indeed, it actually changed his name. He was known as “Alexander John”, despite having a younger brother who was Alexander.  Moreover, instead of immigrating directly from Scotland to New Zealand, I found out that he had been living in Liverpool. Indeed, he had married Jane Ellen Jones at St James Church, Toxteth Park, Liverpool in 1855. Alexander John and Jane Ellen then lived with her parents for four months. They ultimately had four children and at least two of them were born in England. Alexander John moved to New Zealand around 1860 and three months later, Jane Ellen and the children sailed out. They settled in Dunedin where Alexander John was licensee of the Argyle Hotel until he went off to the diggings.

Understandably, my impressions of John Johnston nose-dived sharply. Although I’d never found any signs of greatness,  family legend had it that he’d built the North Sydney/Cammeray Suspension Bridge in Sydney in 1892. As it turned out, that was built by his brother, although we’re sure he was in there somewhere. Previously, I was thinking very much in terms of right-hand man, not the family charity case. Meanwhile, his other brother, Angus Rutherford Johnston was some kind of Indiana Jones type character who’d fought in Nicaragua, had been shipwrecked and captured by Indians, escaped, found gold and settled in Nanaimo, Vancouver Island where he ran a successful store. This has been, and continues to be, a family of high achievers. I’d always thought it was just a matter of time until I found out that John had built a railway, a monumental bridge or somehow made a name for himself somehow, and certainly NOT as a bigamist.

I won’t go into the ins and outs of the bigamy case here, except to say that he stared straight at his first wife in court and denied being married to her, despite their four children. Indeed, when he took the the detective round to see his wife, he really seemed to apply the charm: ” Jane, my girl, you wont prosecute me,” You see, it was actually the Crown which was pursuing the case. In the end, “Alexander John” was found guilty and fined. He got off lightly on a technicality.

However, it wasn’t just the bigamy, or his denial which shot him down in flames. He was also a perpetrator of domestic violence. In 1863, he attacked Jane Ellen with a knife:

Threatening to Stab—Jane Ellen Johnston I charged her husband, Alexander John Johnston with threatening to stab her with a knife on the 13th inst. The defendant was required to give bond to keep the peace towards her for six months, fined in the amount of £lO, and to find two sureties tor £2O each.”

Otago Daily Times, Issue 464, 16 June 1863

I knew nothing about this a week ago, and as you could imagine, it changes everything. I was shocked right to the very core. After all, you don’t really need much of a sense of ethics or values to know this man was a bastard, or at least capable of acts of pure bastardry.

However, as if all of this wasn’t already bad enough, it gets worse. Much, much worse.

On the 8th February, 1866 Jane Ellen and Alexander John’s nine year old son found a pistol, which his mother thought was safely out of reach. Jane Ellen was out in the garden weeding with two of the other children, when she heard a firearm exploding. Nine year old, Thomas James Johnston had shot his 15 month old sister, Ellen Overton Johnston, in the chest and she died. He didn’t know it was loaded.

Clearly, real life has now moved into the pits of hell, and to compound his first family’s agony, Alexander John was off living with my 4th Great Grandmother, Maria Bridget. Indeed, their son Angus had been born on the 6th January, 1865 and Margaret was born roughly a year later.

This wasn’t the story I was planning to write, even for my own consumption.

Of course, not all non-fiction takes such a turn for the worst. However, the story of John Johnston certainly illustrates that you need to be prepared for surprises, and somehow make the necessary adjustments.

The Challenge of Writing My Own Motivational Memoir.

I’ve faced different, but related challenges, working on a motivational memoir, known as: “The Book Project”. Just as I thought the plot was reaching it’s climax and about to trail off to its “living happily ever-after” conclusion, fate stepped in and the book was dead.

You see, I was working on a motivational book about overcoming my severely debilitating auto-immune disease, dermatomyositis and for 12 months, I was soaring. Flying high. I’d managed to all but turn my mountain around. I’d lost 10 kilos despite being on the fat drug, prednisone. I’d taken up the violin despite my disabilities and had played at a happening local music venue at our end of year concert. I’d started my blog and had built up an online blogging community. I’d also gone on an adventure camp where I’d gone parasailing, driven a quad bike and gone down the water slide on the boat without my glasses on, and had ridden a camel. I’d also managed to return to work one day a week as Marketing Manager of a local IT company and was also helping out in my son’s classroom as a volunteer teacher’s aide, and sometimes took the class. These were all things not only I had deemed impossible. It was all there in black and white, or at least shades of grey. The grand finale for the book, was going to be skiing down the Front Valley at Perisher, which would represent turning my mountain. Unable to climb a mountain and ever the individual, I’d decided to ski down the mountain instead.

Indeed, I did it. More as a terrified, quivering wreck of my former self, but I’d pulled it off.

However, even while I was still  down at the snow, I developed the beginnings of a severe chest infection, which blew up into pneumonia. One night while coughing uncontrollably, I briefly even stopped breathing. Meanwhile, a CT scan on my lungs showed that I’d developed fibrosis as a complication of the dermatomyositis, and suddenly the thrill of soaring steadily upwards, came crashing down and didn’t stop at ground level. It kept falling. Seriously, at this point I thought I was looking at a death sentence. Twelve months to live. I’d smacked into the wall, and I was all but a dead duck.

This wasn’t how the Book Project was meant to end. You can’t write a motivational book, which finishes off with you drowning in your own lungs. Come on. That’s not even a story you could give away, let alone become that guaranteed best seller I’d written in my head right down to the second last page.

Fortunately, my doctors put me on a series of chemo infusions of a drug called cyclophosphamide and five and a half years later, I’m still here, and I’ve been in remission ever since. Amen!

While these plots certainly plunged unexpectedly deep into the dark side, they do illustrate how when you’re writing about real people, the author is not in charge. Indeed, you’re much more of a passenger, than sitting in the driver’s seat. Indeed, you can see that at work even when I was writing my own story, although in that instance, it was fate which stepped in.

Clearly, this has become a very lengthy post, and so I’m going to stop it there and turn it over to you. Have you ever written non-fiction? How did you face and overcome some of the hurdles involved? It was be great to get a bit of discussion going.

Best wishes,

Rowena

Belated Weekend Coffee Share… 25th June, 2018.

Welcome to Another Weekend Coffee Share!

It’s now Monday night here, so I hope you’ve have a great weekend . Although I’m turning up rather late this week, hopefully a few stragglers would still like to join me and keep the coffee and conversation flowing.

How was your week? Do you have any stories you’d like to share?

Well, I had a busy week and much of it was rather annoying because it involved medical appointments. I had one in Sydney, one locally with my GP and was back to the GP for an iron infusion on Friday, which will hopefully turn me into Popeye the Sailor Woman in a few weeks’ time once it’s take effect. These medical appointments weren’t such a big deal, and it was more a case of one appointment generating another and then they seem to breed like rabbits for a bit. However, fortunately they largely retreat back into their hidey holes much of the time these days and only reach this kind of frequency very occasionally.

After my doctor’s appointment on Monday, I headed down to Kirribilli for a coffee and set myself up with my notebook and started randomly writing. I love downloading my soul in pen on paper like this in a rustic old cafe, and it also feels so good for the soul to get all that stuff out as well.

Last week, the kids’ school held their annual Variety Concert over two nights. Our daughter danced on Tuesday night and our son was on lights the first night and backstage the next. What with having to drop him back and forth, my daughter and I also decided to watch the second concert as well. I’m really glad we did, not only because the acts were so good and we enjoyed some incredible entertainment, but also because I hope by being there, we might’ve encouraged some young performers. It’s very rare that you ever hear anything about being a “talented audience”. I’ve personally put in many years learning the piano, ballet and the violin, but no one even sat me down and encouraged me to learn how to be a productive member of the audience and be more than just a bum on a seat. Of course, my mother taught me not to crinkle lolly wrappers and not to cough, go to the toilet or talk during a performance and these days we also need to ensure we switch our omnipresent phones to silent. However, these things are more about the etiquette of being in the audience, rather than really getting into it. You can applaud with gusto and enthusiasm. Smile. Better still, you can compliment the performer afterwards, ideally pointing to something specific so they know you mean it and you payed attention. You see, while the performer’s talent might seem very obvious to you and that you might expect them to be egotistical and full of themselves, quite often I find the reverse is quite true. That many highly talented performers are perfectionists. Perfectionism is a state which can never be reached, and so far too many live with an agonising sense of their weaknesses and mistakes, rather than their incredible abilities to take everyone around them on a magical flight to someplace else, or even deeper within their soul.

Anyway, I digress. I am rather prone to philosophizing, and I guess sharing philosophical ideas over coffee is nothing new.

While I don’t really see getting around my local area as “travelling” per se, the beauty about blogging with people from all around the world, is that my own backyard become exotic. My backyard to travelling to you.

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Our local Beach during Winter.

Anyway, last Saturday Geoff’s sister from Queensland came down for a visit along with her son who has been living in Canada or the US for over 15 years. So, we met up with them at a local cafe and then decided he should see more of his own country before he heads back and took him for a drive to Patonga, which is located on the Hawkesbury River about 15 minutes drive away through the bush and round some fairly twisty bends. It’s been a couple of years since I’ve been to Patonga, and I’ve really get to ask myself why I don’t get out and see more of the local environment when I’m surrounded by glorious beaches, stunning coastal views and the great Aussie bush. I guess, like for most of us, life gets in the way. There always seems to be so much to get done and so much of that really isn’t exciting either. It’s little more than crossing stuff off the list, but I know from past experience that ignoring it only makes it worse.

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Fishing Boats at Patonga.

Well, I guess it’s time to wrap things up here. I hope you’ve enjoyed your visit and I look forward to popping round and touching base with you as well.

This has been another contribution to the Weekend Coffee Share, hosted by Eclectic Ali.

Best wishes,

Rowena

 

A Weekend in Parramatta, Sydney.

Last weekend, my husband and I went to Parramatta for the weekend. In many ways, it was quite an unlikely place for us to go for the weekend, as it’s not exactly known as a tourist Mecca. However, I’m really glad we had the chance to explore this part of Sydney for the first time in any kind of depth. By the way, the reason we were staying in Parramatta, was that we were on a couple’s retreat hosted by Muscular Dystrophy NSW, which helps support my various “idiocyncracies”, as I’ve now  refer to them.

It is hard to quite known how to adequately describe Parramatta. Indeed, it’s hard to to encapsulate any place in a few words, or a handful of photographs. Yet, it’s seems that travellers, those of us who are only passing through, always feel the need to try, at least on the back of a postcard.

If I had to summarise Parramatta on the back of a postcard, I’d start of with a brief history lesson.

Parramatta was founded in 1788, the same year that the First Fleet arrived in Sydney. The British settlement desperately needed food and was struggling to find fertile soil in Sydney Cove.  During 1788, Governor Arthur Phillip had reconnoitred several places before choosing Parramatta as the most likely place for a successful large farm. Parramatta was the furthest navigable point inland on the Parramatta River (i.e. furthest from the thin, sandy coastal soil) and also the point at which the river became freshwater and therefore useful for farming. Although initially called Rose Hill, On 4 June 1791 Phillip changed the name of the township to Parramatta, approximating the term used by the local Aboriginal people.[19]

 

In 1789,Phillip granted a convict named, James Ruse, the land of Experiment Farm at Parramatta on the condition that he develop a viable agriculture. There, Ruse became the first person to successfully grow grain in Australia. The Parramatta area was also the site of John Macarthur’s Elizabeth Farm, which had pioneered the Australian wool industry by  in the 1790s. Philip Gidley King’s account of his visit to Parramatta on 9 April 1790 is one of the earliest descriptions of the area. Walking four miles with Governor Phillip to Prospect, he saw undulating grassland interspersed with magnificent trees and a great number of kangaroos and emus.

In years gone by, the story of Parramatta would’ve been a white man’s story. Indeed, when I was at school, we learned nothing about the frontier wars between Europeans and the indigenous Aboriginal people. It’s only now, that I’ve heard about the Battle of Parramatta, a major battle of the Hawkesbury and Nepean Wars, which occurred in March 1797 where resistance leader Pemulwuy led a group of Bidjigal warriors, estimated to be at least 100, in an attack on a government farm at Toongabbie, challenging the British Army to fight.Governor Arthur Phillip built a small house for himself on the hill of The Crescent. In 1799 this was replaced by a larger residence which, substantially improved by Governor Lachlan Macquarie from 1815 to 1818, which is now referred to as Old Government House.

Above: St John’s Church

So, having given you a brief historical snapshot, how about you join me at Parramatta Station. After such a long trip, I just had to stop for refreshments at the Guylian Cafe, where I had a heavenly chocolate dessert and a cappuccino. From there, I walked across to Church Street. On the left, there’s historic St John’s Anglican Church and across the road, you’ll find Parramatta Town Hall, which reminds me of a two-tier wedding cake. Next to the Town Hall, the future of Parramatta is starting to rise out of what has often been hard times. Indeed, throughout our walks around the Parramatta CBD, new buildings and construction sights resemble alien intruders. Next to the Town Hall, we spotted the Bourke Street Bakery, where we had an unforgettable Raspberry Cream Meringue Tart. That’s when we spotted the captivating water fountain, and I’ve just found out this whole area is now called Centenary Square. There’s a ping pong table, large outdoor chess set and on Sunday night, we even spotted a group doing salsa outside together. So, there really are moves afoot to give Parramatta not only a facelift, but also a strong community feel and a heart.

This leads me into a dynamic thriving food area further up Church Street, known as “Eat Street”. Personally, I found this area had a sort of bazaar feel about it with restaurants and street food all sandwiched together to a point that you’re almost not sure where your chair or table belongs at times. There are street vendors, restaurants from a smattering of cultures…Italian, Greek, Lebanese, Thai, Mexican, Cuban. The choices were dazzling and in the end we went to a burger place my husband had been to near work and I had a pork belly burger. We went to a chocolate cafe for dessert. Yum.

Above: I spotted these in the Army Disposal Store.

Moving further Church Street towards Phillip Street, the buildings looked rather old and sad to be honest. There’s old and historic, but quick cheap and nasty construction only gets worse with age. However, that’s not to say that the shops didn’t have character and appeal. Indeed, we found an army surplus store, which in itself is a rare breed these days, but this one also had loads of personality, and there was even a chandelier when you walked in. I also found Tom Cruise and the Terminator on the wall 80s style. In terms of interesting places, I should also point out the Bavarian Bier Cafe, which is housed inside an historic Church. We had planned to have dinner there on Saturday night, but couldn’t get a table.

Above: The German Bier Cafe.

We stayed at the Parkroyal Hotel on Phillip Street, and really enjoyed our stay. As I said, we were staying there with other couples from Muscular Dystrophy NSW. We met up together in the foyer and had a beautiful dinner in the hotel restaurant together on Friday night. I think I only knew one person well beforehand, but by the end of the weekend, we were one big happy and well-fed family and exchanging email addresses and contacts. It really felt like such a blessing to all get together, but it was also great that the weekend away also provided for time for Geoff and I to be on our own. We have really been quite desperate to spend any time to actually focus on each other and take care of each other, without trying to spread ourselves four ways, or even further if the dogs or work are also demanding attention. We are by no means alone in this and I’m very grateful to Muscular Dystrophy NSW for organizing the retreat, my parents for taking the kids and a friend for minding the dogs and the home front.

In my next post, we will visit Elizabeth Farm and Old Government House.

Have you ever been to Parramatta? What are your thoughts about it?

Best wishes,

Rowena

A Legend in My Own Hair Follicles.

Before the magic of the Royal Wedding and seeing Harry and Meaghan tie the knot in spectacular fashion, I hung up my pink washing up gloves and metamorphosed into a star. I, the greatest unknown violinist, legend in her own hair follicles, performed Minuet by Beethoven with my violin teacher at Gig Night. That’s the modern equivalent of what was known as a “Soiree” back in the day. Indeed, it might have been more like my grandparents’ day, but there we were performing in the studio with real performance lights and sound equipment and our very own stage. It was personal, intimate and my husband and kids were all lined up in a row in the audience…my support crew.

Well, behind every star performer, there’s also their teacher. When it comes to my teacher, however, she had special duties. She was not only accompanying me in our duet in the kind of way that compensates for what I’ll call my “idiosyncrasies”, she had to help me on and off stage. Indeed, we made a decision that I would enter from backstage to prevent me from having a spectacular trip and fall getting up on the stage. I’m pretty good at reconnaissance these days, and I needed to hold onto the wall climbing up the step and was rather concerned that I could fall into the amp. The good thing is that the team at the music school is well versed in my idiosyncrasies and were only too willing to help. Moreover, I’m also one to speak up.

I should also point out that the staff at the music school have experienced these idiosyncracies before. A few years ago when we were performing at the school Christmas Carols, I stepped on the edge of the where the asphalt meets the grass and my ankle flipped over (not uncommon) and then I heard this crunch and fell. The pain was excruciating. Blood was dripping down my knee, but did I pike out? Does a violinist ever give up, even when the ship is sinking? Of course not. I played on and was helped on and off the stage that night too.

My performance tonight wasn’t perfect. I knew it wasn’t going to be. Yet, I was hopeful. Moreover, despite my nerves, I really love performing and being a part of a performance. I like getting out of my cramped quarters in our corridor of a dining room where I usually have to hold my breath as husband, kids, dogs, tennis balls squeeze or fly past and put my feet on that stage, dress up in my blacks and even put on come makeup and lipstick and be a violinist on the outside too. A musician. Knowing I belong here. That this stage is mine, even if it’s only for a few minutes. I own this space (something I picked up from dancing btw).

It’s a space I usually have to grow into, because it’s all too easy to put my playing down. I’m not in the Sydney Symphony Orchestra. So, how could I ever consider myself a violinist? I haven’t even tried to learn vibrato, because I really don’t believe in myself. Don’t believe it’s possible. Of course, as I said, I have a decent list of “idiosyncracies”, which let me off the hook. Moreover, be honest, it hasn’t felt that important. It’s been more important to simply be able to play without making mistakes. However, it’s something I come back to once in a while, and learning vibrato is a natural progression for a violinist. Just like my daughter will soon be getting her first pair of pointe shoes for ballet, I should be equally enthusiastic and bursting out of my skin to learn vibrato. Take the next step. I should be wanting to grow, even though it usually means a phase of going backwards as we tackle the new skill.

Anyway, the reason I’m writing about all of this is twofold.

Firstly, I wanted to share my violin world with you. I don’t write about it all that often, but I actually have a lesson each week. I am quite a fan of Suzuki method, although I use the music and don’t play by ear. For those who know Suzuki, I recently moved onto Book Three. I was so proud. It’s been a long journey. I have hydrocephalus and dermatomyositis.  So, I never thought I’d be able to play the violin at all and only took it up again when my daughter insisted on learning, and she needed some assistance. I sat in on her lessons and while she has a rather on and off again relationship with her violin, I’ve stuck with it. She’d probably get to my level after a few weeks’ steady practice, but I’d only be delighted to see her overtake me. Well, she already has. She performed at the Sydney Opera House with her school two years ago at the tender age of 10. Clearly, you’re much better off trying to play at the Opera House as a young beginner than a geriatric.

The other reason I wanted to share my violin journey with you, is to encourage you to consider taking up that instrument you’ve always wanted to play. To go back to the piano you played at a kid, which could well be used for displaying family photos and ornaments than it’s intended purpose. Have a go.

I never considered myself a real music lover or expert of any sort. However, I can sense this is changing. That something new is awakening within. Actually, it’s not something new. It’s like when you’re doing a big clean-up and you find something you haven’t seen for a good 10-20 years and you taken right back to that forgotten time and place and all the emotions come flooding back as there’s that sense of coming home. I have always loved to sing and was good enough, but my voice is rusty and my violin’s become my voice, and to turn to the words of Johnny Farnham’s The Voice I need to

You’re the voice, try and understand it
Make a noise and make it clear

Do you have any musical dreams? If you could be any musician, who would you be? I’ll have to give it some thought.

Best wishes,

Rowena

Ouch! Killing a Killer Sinus Attack.

Only a few days ago, I was jubilantly chirping about finding my happy feet. Well, I should’ve held onto that thought. Stuck it onto my forehead with superglue, although it would need to be written backwards so I could read it in the mirror. “Life is Great”. However, please don’t ask me to actually write that backwards at the moment, as I’m not thinking clearly. I was simply being dramatic.

For those of you who’ve been following my trials and tribulations, you might recall that I was fighting off Fergus the Omnipresent Operatic Cough for about 6 months and it was getting me down. He was so darn persistent that he could’ve taught Calvin Cooledge a thing or two about persistence.

“Nothing in the world can take the place of persistence. Talent will not; nothing is more common than unsuccessful men with talent. Genius will not; unrewarded genius is almost a proverb. Education will not; the world is full of educated derelicts. Persistence and determination alone are omnipotent.”

Calvin Coolidge

Well, I managed to have a good couple of weeks, but then Fergus decided to get sneaky. Or, perhaps like me, he has no sense of direction and he was actually heading back down to my lungs, but ended up in my sinuses by mistake. I don’t know. Either way, the results are the same. I’ve been in excruciating pain and my entire head felt like it was being compressed in a vice and the evil Fergus was turning the handle and laughing, of course and his evil eyes glowing like Christmas lights.

Actually, that shouldn’t be written in the past tense. That’s because Fergus is still at it and flaunting his malevolence. Nothing makes Fergus happier than a bit of torture.

Anyway, I’d been having these intense headaches for a few days, and wondering why my eyes were aching and was getting a bit concerned. Other than having Fergus is my sinuses, I have hydrocephalus and a shunt in my head and these were all the kind of symptoms associated with a block shunt and a trip back to the brain surgeon. With my daughter’s birthday tomorrow, slumber party and associated comings and goings, brain surgery wasn’t exactly on my list.

So, I was starting to get concerned. Just a little concerned. Nothing approaching a major, full-on panic attack with all the bells and whistles. However, then I blew my nose, and I swear a real, living breathing alien jumped out. It was freaky, weird and almost terrifying. I’m not going to thrill you with a graphic description or photographic evidence, but let’s just say this thing was a cross between a Killer python and a jelly rat. The sort of thing that has the infection control Police out in their lab coats, masks, rubber gloves and buckets of Domestos. It’s Quarantine.

Fortunately, I was booked in for an appointment with my rheumatologist at Royal North Shore Hospital. This is one of Australia’s top public and research hospital and home to weird and wonderful conditions like my dermatomyositis. My husband, offering whatever encouragement he could to his embattled soldier, said I was going to the right place for the day. True! Why would I want to go to a tropical island when I could be at the hospital? Well, when you’re feeling that crook and concerned your brain’s being devoured by infection, the deserted island can wait. I was looking forward to going back to my familiar stomping ground where there’s enough expertise from rheumatology, lungs, brain, exploding sinuses to handle whatever Fergus was going to dish up this time.

Well, much to my relief, they let me go and I left with a script for more industrial strength antibiotics, and I actually managed to have an extended coffee with my best friend from school at a cafe near the station.(I perk up well).

I should also mention that I was reading Markus Zusak’s: The Book Thief on the train and in the waiting room. It’s a funny book to be reading when you’re feeling really crook and wondering if your number’s about to come up, but it’s beautifully written. I loved the film and started reading the book and got distracted, but wanted to have another go.

Train trips are always a good way for me to really get stuck into a book as it takes about 90 minutes to get to the hospital. Moreover, it’s uninterrupted time and not that jerky stop start reading you have when you’re going off to sleep. Have you read The Book Thief? It’s just brilliant and the language is so poetic and beautiful. It’s also very philosophical, which I love as well. So, after a day of train trips and waiting rooms, I’m now up to page 164 and I take my time to absorb the prose as well. It hasn’t been an express read. I like to let the words and the magic settle like Autumn leaves in the snow (not that we have either here).

Anyway, I woke up at midday today after my husband handled the morning run. I can’t begin to describe the throbbing pain. However,  even walking a metre or so to the bathroom was a huge agononizing effort and I had a glass of water hoping that would help. It was a separate trip to get some Panadol out of my husband’s drawer. I have never experienced pain like this. I had to let those process before I could even ring my husband to tell him how sick I was. That was very humbling, scary. Nobody wants to be that vulnerable. So stuck in a dreadful situation and unable to respond.

Fortunately, for me it was temporary. I rang my husband which perked me up a bit and the Panadol and water were starting to work. With a huge blow on my nose, there was also more relief. I’ll be heading off to pick the kids up from school soon and I’ll be back on my feet in my usual style. Rowena is fine.

I’m glad I’m feeling better and finding ways to keep going, get back on my feet and not let chronic health control my life. Yet, on the other hand, I could use some TLC and my own private nurse to take care of me. Peel me grapes. I know I need to rest.

Do you live with anything ongoing, which is challenges you? Please share in the comments and upload your inner Fergus.

xx Rowena

Finding My Happy Feet.

“High heels are like a beauty lift. In a flat, you can feel beautiful, but a stiletto changes your mood, how you move – like a wild, beautiful animal. The idea was always to follow a woman’s wardrobe, her desires.”

Giuseppe Zanotti – Shoe Designer dedicated to providing women with “the most superlative shoes in the world”.

Confession time. While I’ve never fallen head over heels in love with a pair of shoes, I do have a thing for high heels. Indeed, since they’ve become the forbidden fruit, you could even call it an obsession.

Of course, I’m not the first person to believe high heels ooze sex appeal, a sense of fun, glamour and the promise of a glamorous night out. Indeed, anything but a night in with your cat watching re-runs of I Love Lucy.

Unfortunately, some of us are forced to hang up our stilettos long before our time. When even the Stiletto Queen has to hang up her sacred heels, and resort to (dare , I mention the unmentionable) SENSIBLE SHOES.  Or,  as my 11 year old daughter disparagingly calls them, “GRANNIE SHOES”. Whether through disability, accidents, chronic health, we’re left thankful to be alive, able to breathe and even move at all. As trivial as wearing pretty shoes might sound when you’re fighting for your life, they can also represent a broader sense of loss and grief after your life with all your grand plans and dreams, lands on the proverbial snake, instead of the ladder, in the game of life.

“You can’t understand someone until you’ve walked a mile in their shoes.”

This is the path I tread. I started this journey in my mid-20s when subterranean hydrocephalus in my brain, suddenly became graphically symptomatic. It was hard going to rehab and learning to walk again at 26 when all of my friends were out partying, their careers were still soaring and my life was heading the other way. I’d packed up my apartment and moved back in with Mum and Dad and was off to rehab in very sexy tracksuits, joggers and mixing with the over 80s.

Thanks to surgery, ultimately I largely recovered from the hydrocephalus, but still experienced debilitating fatigue.Moreover, the neurons weren’t firing in quite the same way either. I was fine but not fine.

However, at 35, I developed dermatomyositis, a debilitating muscle wasting disease after our daughter’s birth. It took 18 months to diagnose and by this point, I was in dire straights. As soon as I was admitted, I was put in a wheelchair. That was my legs for the next couple of weeks, followed by a walking frame and loads of prednisone. Despair doesn’t even begin to touch the depths of what I experienced then.  Survival was all that mattered and I didn’t even hope to see my children grow up. That was simply somewhere too far over the other side of the rainbow. I couldn’t even go there. They were still babies and wouldn’t even remember me if I’d passed. Rather, there was only today, tomorrow and each and every day was precious…the sort of precious you hold onto no matter how big the storm, how high the waves. Your life and everything you value, is hanging on by barely a thread and you won’t let go.

“What you wear – and it always starts with your shoes – determines what kind of character you are. A woman who wears high heels carries herself very different to a girl who wears sneakers or sandals. It really helps determine how you carry yourself.”

Winona Ryder

Yet, ten years down the track when the pressure’s eased off a bit, my need for footwear has taken on an element of urgency. The pup chewed up my one good pair of sensible shoes. After trawling round a few shopping centres, I haven’t found anything suitable. Not unsurprisingly, sensible shoes for the younger generation aren’t in high demand. Moreover, as much as my daughter might call sensible shoes “grannie shoes”, there’s still a line. A line I still can’t cross. I can’t. I can’t. I don’t want to turn 80 before my time. Instead, I might just have to go barefoot.

“I cried because I had no shoes until I met a man who had no feet”

― Helen Keller

So, with my shoe situation becoming desperate, I confess I muttered a prayer…a prayer for a pair of simply black shoes, comfortable, supportive and wouldn’t kill me. I wasn’t asking for luxury but something on your feet is a necessity, perhaps not quite in the vein of needing to eat but protecting your feet isn’t frivolous nonsense.

“I’ve spent $40,000 on shoes and I have no place to live? I will literally be the old woman who lived in her shoes!”

Carrie Bradshaw, Sex In The City

louis-vuitton-patent-paradiso-flat-sandals-36-noir-black-00016

So, after that long preamble, perhaps you can now understand why I was so overjoyed when I spotted a pair of black, Louis Vuitton sandals in the local Vinnies charity shop. They were completely flat and fit me perfectly. I’m not even sure if they’d been worn. Time to do the happy dance, except wait, there’s more. There were also two pairs of luxury Italian leather shoes. These shoes would’ve cost around $3000 new, so I was overjoyed to pick up the lot for $35.00. One pair was a little on the small side, while the others have a small heel and I’m not exactly sure how far I’ll be able to wear them. I might need to use my walking stick or stay sitting down, but I don’t care. I’ll find a way. Find somewhere suitable to wear them, and I’ll be the phoenix soaring from the ashes of disability, chronic health and all efforts to make me old before my time.

By the way, ever the storyteller and writer, I also had to cast a thought about how they got there. Whose shoes was I walking in and where were they going to take me now?  We live round the corner from Pearl Beach, which is a bit of a millionaire’s hideout. It’s where Bill and Melinda Gates stayed when they were out in Australia, and its not impossible that they might have belonged to the likes of Nicole Kidman, Cate Blachette although Hugh Jackman might be too big a stretch. It might even be possible that Carrie Bradshaw and her enormous shoe collection migrated there after Sex In The City folded. Whatever, I hope whoever owned these shoes, led a good life and will share a bit of their sparkle with me. After all, I’m still trying to re-climb proverbial ladder, and reach back up for the stars.

Meanwhile, I’m giving thanks for such a spectacular answer to prayer, and I can’t wait to launch into the next chapter. Surely, it has to be amazing! After all, I’m a believer.

Have you experienced any miracles lately? Please share them in the comments.

xx Rowena

PS The featured image was taken at Circular Quay alongside Sydney Harbour.