Tag Archives: resilience

Visiting the Young Endeavour, Stanley.

Continuing on with our travels through Tasmania, last Saturday, we drove down to Stanley to see a magnificent tall ship, the  Young Endeavor a Royal Australian Navy sail training ship

The Young Endeavour Scheme began when the magnificent sail training ship STS Young Endeavour was given to the people of Australia by the United Kingdom as a Bicentennial gift back in 1988. Since then, the Scheme, in partnership with the Australian Government and the Royal Australian Navy, has provided challenging training voyages for over 11,000 young Australians aboard Young Endeavour.

To be selected, young Australians can put their names in the ballot. No previous sailing experience is required and it is the opportunity of a life time.

With our family’s interest in sailing and history, we were looking forward to being able to climb onboard and check it out.

Unfortunately, very heavy winds picked up and we were unable to board the ship.

However, we did get the opportunity to meet and listen to former crew as well as a young lady who is was leaving on it the next day. Neither had any prior sailing experience and apparently they teach you everything you need to know onboard. I found that that both encouraging and a bit scary but they know what they’re doing. The experience is well known for improving self-confidence, resilience and problem-solving in young people and it really is the opportunity of a lifetime…especially climbing straight up the mast and clinging on for dear life while the boat rocks to and fro.

Humph, they can keep that experience.

As much as I would’ve loved to do this back in the day, I’m quite happy to stick to plain sailing these days.

Xx Rowena

Messy: How to Be Creative and Resilient in a Tidy-Minded World.

If you could see my desk and take a panoramic view of my house, you’d immediately understand why I bought Tim Harford’s: Messy: How to Be Creative and Resilient in a Tidy-Minded World.

It’s not because I’m anally clean. Rather, it’s because I’m naturally messy, chaotic yet delightfully creative. Indeed, I rarely have any trouble with writer’s block and have more of a problem with creative overflow and all my neurons going off at once.

I didn’t need to think twice when I first spotted the book in  a Surry Hills bookshop in Sydney (the one with the rainbow bicycle out the front). I’d finally found an ally…someone else on my side of the messy desk debate. After all, I’ve long been an advocate of: “Messy desk, active mind”.

However, with the rise of the dreaded Declutter Movement, I’ve been becoming increasingly outnumbered. So, I welcome this book, which will become a handy weapon to defend myself against those marauding armies of preachy declutterers. While it might not be the size of a telephone book or antique Bible, it could still inflict a bit of damage, sending them packing along with their almighty bins.

book pile

However, Messy: How to Be Creative and Resilient in a Tidy-Minded World is far more broad reaching than the state of your desk. I guess it’s saying that you don’t have to be tidy minded to be creative. Indeed, Harford is suggesting quite the reverse. That chaos, shock thinking and juggling multiple projects across disciplines has led to some incredible breakthroughs. That being focused might not be the best approach to generating creative solutions after all. Indeed, he suggests the reverse.

I am still reading Messy and am only up to Chapter 3. While I appreciate that you usually finish the book before you write about it, I couldn’t wait.  I am finding this book so amazing that I’m not just reading it, I am studying it…scrutinising each and every page. That in itself is not exceptional. I always read books with a pen in hand to underline stuff and also jot down striking vocabulary such as “monomaniacal tendencies” in this instance. However, when it comes to this book, my scribbling has reached new heights and I am Googling bits along the way. There’s just so many valuable insights to investigate and explore that I really want to take it as far as I can. Just how far can these revelations take my writing? The way I think? I don’t know but I have very great expectations and am savouring every word along the way.

That’s why I thought I’d run through the book as I go on the blog and I’d like to encourage you to rush out there and buy it, so we can read it together.

When I studied creative writing at university, I was told that “writing is a thinking process”. Therefore, if we’re going to improve our writing, we also need to work on our thoughts, how we think, what inspires us and what helps us take those incredible creative leaps which take us way beyond anything we’ve ever written before.

As a reader, one of my pet hates is the number of writers who write about what it means to be a writer. Added to that, is the high percentage of novels which have have a journalist or writer as the protagonist. There’s such a plethora of characters out there, so why do so many writers stay within their comfort zones?

You might be surprised to know that I’m not only a writer but also a photographer,  am learning the violin and for the last 3 months, I’ve been taking adult ballet and lyrical dance classes. That’s alongside living with a disability and chronic health issues. This enables a lot of cross-fertilisation. I actually think of this as creative cross-training in the same way a swimmer might run, lift weights, do aerobics and yoga.

Have you read: Messy: How to Be Creative and Resilient in a Tidy-Minded World?

If not, I’d personally recommend abandoning your current read and getting stuck into it before you let the opportunity pass. It won’t just get you thinking, but will also inspire action, change and growth beyond writing. After all, we as humans should be in a state of constant refinement. To sit still, is to stagnate.

Well, I apologise for putting on my motivational speaker hat, but who doesn’t want to be their best? The only trouble is putting in the work.

Anyway, rather than stuffing all these insights into one humungus post, I’m breaking it up. My next post will be looking at Brian Eno’s Oblique Strategy Cards and then I’ll be looking at how to keep multiple projects on the boil without blowing a gasket.

That’s just looking at Chapter 1 on Creativity. So, stay tuned for more gems to get those synapses firing…really firing!!

xx Rowena

Rejection…It’s a Short Story.

Rejection..it’s the ugly side of being a writer.Not only that, it hurts…like a knife stabbed deep in our heart and twisted round and round and round by some sadist who doesn’t care about our fragile self-esteem.

Anyway, as much as we hate it and as much as it hurts, we are not on our own. Indeed, tales abound of very successful authors receiving multitudinous rejections. William Golding published his first novel, Lord of the Flies, after 21 rejections. Beatrix Potter decided to self-publish The Tale of Peter Rabbit after rejection letters started to pile up. The original run was 250 copies; the book has now sold over 45 million copies.  J.K. Rowling, the great literary success story, failed to sell Harry Potter and the Philosopher’s Stone to 12 different publishers until the daughter of an editor at Bloomsbury Publishing took an interest in it. Harry Potter is now worth at least $15 billion. Stephen King sounds downright proud of the number of times he was rejected as a young writer. In his On Writing, he says he pinned every rejection letter he received to his wall with a nail. “By the time I was fourteen,” he continues, “the nail in my wall would no longer support the weight of the rejection slips impaled upon it. I replaced the nail with a spike and went on writing.”

 

So, when I share my heartfelt angst over my latest rejection, at least I know I’m not alone and I keep some pretty good company.

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The Actual Murder Scene.

A few months ago, I entered a local short story competition. I only had a few days to put my entry together and decided to base it on a murder story I’d stumbled across doing my family history research.It’s set in the Sydney Harbour suburb of Balmain, which was historically quite a rough, working class suburb. I still haven’t been able to establish whether I’m related to these people thanks to a very frustrating dead end I’m unable to shift.

Anyway, after waiting several months for the outcome of the competition, the award ceremony was held yesterday and a room full of hopefuls all sat in their seats with great expectations and for most of us, pending disappointment.

However, I wasn’t expecting disappointment or rejection. I was pretty pleased with my entry and thought I was a strong contender. I was sitting in my seat with sweaty palms and almost making myself ill with stress. I wondered whether it would be better to win a Highly Commended just to put me out of my misery. The list of winners was thinning out and someone else’s name was read out instead of my own, I was gutted. Emotionally kicked in the guts.

While many would say my heartbroken angst was an over-reaction, and that I should have taken it as a sign of failure as a writer, but when you’re trying to make it on the international scene and you can’t crack the local market, you’re hardly going to be all smiles doing the happy dance, are you?!!

Well, to be fair to myself, I don’t write short stories and I had to get my entry together in a couple of days. So, I clearly could’ve used more time. Moreover, once I’d got home and looked up characteristics of the short story, I realised that my story actually needed a lot of work, especially when it came to structure. I’m quite the panster (person who writes by the seat of their pants and by contrast isn’t a planner) and a bit of structure and planning could well be added to the mix.

I posted the story today in its original format today and you can read it here: The Secret. I’d really appreciate your feedback. I’ve decided to make quite a few changes so please don’t hold back.

How do you deal with writing rejection?

Personally, I’m trying my best to be pro-active and learn from the experience. Rework it. Not just file it in the waste paper basket out of hurt disgust and despair.

After all, there’s always next year.

xx Rowena

PS if you want to see a great image for rejection, click here: http://rejectiondigest.weebly.com/

 

 

 

 

Disaster Crafter!

Kid’s craft should definitely come with warnings. I’m not talking about those warnings such as: WARNING! CHOKING HAZARD- Small Parts. Not suitable for children under 3 years.

I’m talking about warnings for parents.

THIS PROJECT SHOULD NOT BE UNDERTAKEN UNLESS YOU HAVE THE PATIENCE OF A SAINT

Or…

WARNING! MUST BE QUALIFIED SURGEON/ENGINEER/ARTIST TO COMPLETE THIS PROJECT!

Perhaps, I should have confessed upfront. I have failed kid’s craft again. This time I have screwed up a relatively simple project that any 8 year old could do but was somehow beyond my abilities! I guess that makes me a loser! Make that loser loser!

Our latest craft project, aside from obligatory choking warnings, advised that children 6-8 may need some help and children 8-10 should be able to do it themselves.

I thought our 6 year old daughter would have no trouble completing it. She is very advanced like most people’s children. What I didn’t envision was that I would have trouble doing it. In fact, that I would sabotage and almost destroy our fairy completely!

Yesterday, we visited our local toy shop. So far, so good. Well, I came across a kit where you can make your own “stained-glass” fairy. She even comes with her own pet unicorn. You simply pour the crystals into the metal frame and put it in the oven to bake. Miss and I were both very excited! She loves craft just as much as I love revisiting my childhood!

You see I loved making these as a kid. That’s why I bought it. I remembered pouring the crystals into the frame and then watching them metamorphose like magic in the oven. They were so much fun and so easy. I wanted our daughter to share in the magic. Our son too if he hadn’t disappeared.

In all my excitement, I didn’t look that closely at the fairy and didn’t appreciate the fine attention to detail required. The metal frame was indeed quite intricate in places and we needed to apply one crystal at a time with the precision of a micro-surgeon.  This is all very well if you are the micro-surgeon type and you have the time to be so meticulous. We, on the other hand, were making ours’ before school. While we weren’t exactly rushing, we didn’t have all day either.

As I said before, my experience of making these stained-glass thingys was pouring the crystals into the frame. That is much more my style. I’m much more of a broad-brush kind of artist. Slap on the paint. I need a style which is a bit forgiving and allows a lot of scope for mistakes. Precision isn’t my thing and when it comes to staying within the lines, I couldn’t be bothered. After all, aren’t lines  meant to be broken, extended, challenged? Isn’t that what being creative is all about?

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Miss Aged 6 with her doll.

Miss Perfectionist, on the other hand, is very particular. Precise. Without any consideration for my poor, wounded self-esteem, she very bluntly lets me know when my artwork isn’t up to scratch and doesn’t look like the real thing. She is also 6 and one of the first rules of colouring-in is that you stay inside the lines. I’ve been told before that I need to go back to kindergarten to learn how to colour-in properly.

As much as Miss is precise, she is also a perfectionist. Of course, she started off with the most fiddly bit where you could only apply one crystal at a time. She was struggling and quickly became frustrated and that’s when I was called in. My approach of tipping the crystals in wasn’t really appreciated. I also mixed the colours and I thought the fairy would look quite nice in a pink dress with purple spots but this wasn’t good enough. It didn’t meet Madam’s high standards and so she started to remove the offending dots. Well, I obliged and was using a fork to get them out when disaster struck. The fork clipped the metal frame lifting it ever so slightly off the tray and the crystals all tumbled out of position. To make matters worse, I couldn’t wriggle the frame back onto the tray either. It was resting on top of the crystals instead. The crystals had all gone AWOL.  On the brink of despair, I shoved it in the oven. It was a done deal!

At first, Miss was surprisingly impressed. She was quite excited and told me it was “pretty”. It didn’t take long for either of us to see its short comings. There were quite a few “extensions” added to the frame. You know…extra bits. I even managed to fill up the hole at the top. Yes, that’s right. That hole where you put the piece of ribbon to hang it up. At least, I could have got that bit right!

I soon found her chiseling away at these offending additions with a sharp knife. As I carefully removed the knife, once again craft had become yet another lesson in “acceptance”.

I know this won’t be our last craft project. As much as I protest, I keep finding more craft activities to frustrate us.

For the time being, however, we’re going back to baking. You can’t go wrong with cupcakes!

cupcake

A Cupcake…the safe alternative.

Do you have any craft disaster stories to share? I’d love to hear from you!

I have reblogged this post which was first published in 2012. My daughter made another one of these sun catchers today and wanted to share this with you as a back story.

xx Rowena

Adversity…Your Response.

Overcoming severe adversity is a major challenge. Yet, we hear so many stories about survivors overcoming monumental hurdles to achieve the seemingly impossible and others who turn their grief into action. They bring about change so no one else will know their anguish.

Mary Batty, Australian of the Year 2015, was a classic example. She has pulled off monumental changes in legislation after her beloved son was killed by his father through domestic violence.

Intrigues me how people can function after such loss and I quite liked this little parable I came across during the week. It somehow seems to explain how people respond using a very simple analogy but offers great insight.

Well, at least I think it does.

Here it is:

……..

Once upon a time a daughter complained to her father that her life was miserable and that she didn’t know how she was going to make it. She was tired of fighting and struggling all the time. It seemed just as one problem was solved, another one soon followed. Her father, a chef, took her to the kitchen. He filled three pots with water and placed each on a high fire.

Once the three pots began to boil, he placed potatoes in one pot, eggs in the second pot and ground coffee beans in the third pot. He then let them sit and boil, without saying a word to his daughter. The daughter, moaned and impatiently waited, wondering what he was doing. After twenty minutes he turned off the burners. He took the potatoes out of the pot and placed them in a bowl. He pulled the eggs out and placed them in a bowl. He then ladled the coffee out and placed it in a cup.

Turning to her, he asked. “Daughter, what do you see?” “Potatoes, eggs and coffee,” she hastily replied.

“Look closer”, he said, “and touch the potatoes.” She did and noted that they were soft.

He then asked her to take an egg and break it. After pulling off the shell, she observed the hard-boiled egg.

Finally, he asked her to sip the coffee. Its rich aroma brought a smile to her face.

“Father, what does this mean?” she asked.

He then explained that the potatoes, the eggs and coffee beans had each faced the same adversity-the boiling water. However, each one reacted differently. The potato went in strong, hard and unrelenting, but in boiling water, it became soft and weak. The egg was fragile, with the thin outer shell protecting its liquid interior until it was put in the boiling water. Then the inside of the egg became hard. However, the ground coffee beans were unique. After they were exposed to the boiling water, they changed the water and created something new.

“Which one are you?” he asked his daughter. “When adversity knocks on your door, how do you respond? Are you a potato, an egg, or a coffee bean?”

Any thoughts? I’ve been a potato, egg and a coffee bean at different times…as much as I would like to say I was always the coffee bean!

Hope you are having a great week!

xx Rowenaa

M- Dorothea Mackellar:Dead Poet.

Dear Miss Mackellar,

It is such an honour to write to you as part of my ongoing A-Z  Letters to Dead Poets. What started out as a bright spark from the muse, has expanded into an incredible journey covering four continents  from 278 B.C. through to 1998. So, there’s considerable diversity.

The reason I am writing to you is to acknowledge what your poem My Country means to me.

To be perfectly honest, I can’t remember a time where I didn’t know those famous lines from Verse 2:

I love a sunburnt country,
A land of sweeping plains,
Of ragged mountain ranges,
Of droughts and flooding rains.
I love her far horizons,
I love her jewel-sea,
Her beauty and her terror
The wide brown land for me!

Dorothea Mackellar

These words have somehow become a part of me, along with Banjo Paterson’s: The Man From Snowy River. It’s almost like they were sprinkled on my breakfast cereal every day and they’ve unconsciously become an integral part of who I am. I’m sure most Australians feel the same way. That My Country has somehow become part of our national psyche. I even learnt it as a song at school.

 

I gained a much stronger appreciation of the poem while I was backpacking through Europe back in 1992. I was 22 and feeling incredibly homesick. That’s when I truly gained a real appreciation, love and pride in being Australian and my love for the Australian landscape, even if I do prefer it when the grass is green and not scorched brown. There I was in the heart of Paris on Bastille Day revisiting a train trip across the vast space of the Nullarbor Plain on the way from Sydney to Perth. After all, sometimes, you have a leave a place to appreciate it fully and to understand that  Australia was never meant to be Europe!

Mackellar My Country

Indeed, you wrote My Country, under the original title of Core of My Heart while you were in London. Feeling homesick, you had been away from Australia for some time and were thinking about the great Australian landscape which you missed. You were 22 years old when it was first published in the London Spectator Magazine in 1908.

Meanwhile, on Monday 27th July, 1992 as a 22 years old backpacker dressed defiantly in my short navy shorts, a plain blue sleeveless top and pseudo Doc Martins, I walked up a rickety, red, wooden staircase in the Shakespeare Bookshop in Paris to perform my poetry. Being a proud Australian and wanting to set the scene for my work, I opened my reading with My Country. I was an incredibly proud young Australian flying the Aussie flag in Paris.

Poetry Reading

Reading my poetry & Dorothea Mackellar’s My Country at the Shakespeare Bookshop in Paris 1992.

As I recited your poem that night, I had no idea that you were also 22 when you wrote the poem. Like me, you were also missing Australia after spending some time away and writing the poem was your way of thinking of home.

In addition to your appreciation of the Australian landscape,  I also found such strength and encouragement. For so many Australians, My Country has come to represent the Australian spirit and the dogged tenacity of the “little Aussie battler”, who loses the lot in the drought and then those lifesaving rains turn out to be a flood. Yet, miraculously, the little Aussie battler triumphs and defiantly rebuilds and goes on.

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While in many ways that’s become a national stereotype but the strong fighting spirit which you encapsulated in the poem, gives us something to live up to. A belief that we can overcome the twists and turns of fate and battle on. That when the chips are down, we can pull together and bail each other out. We see this played out time and time again, particularly when natural disasters strike. Thanks to your poem, there’s that expectation of rugged challenges but also the knowledge that we can get through it. We’re tough.

Knowing that we’re a nation of survivors is a good thing. There’s tenacity, backbone and dogged determination to stare adversity in the face and push on regardless. I’m not sure whether these qualities are quite as prevalent as they used to be. That said, Australia has always been a highly urbanised society. I wouldn’t be surprised that most of us are now living on easy street totally estranged from the Australian bush and the farming experience and forget that milk comes from cows instead of cartons.

However, time and time again through natural disasters we see this spirit return and overcome. Through bushfires, flood and drought we pull together, helping each other out and even though were such a diverse nation, we pull together as one.

I apologise if this letter quite isn’t up to my usual form. Trying to get my way through these letters every day with my kids home on school holidays is challenging. Te edit will have to come back for a return visit!

Yours sincerely,

Rowena

This is the latest installment in my series of Letters To Dead Poets for the A-Z Challenge. Please click  here to catch up on Letters A-H. This list will be updated on Sunday.

Happiness Through the Wars.

For the last 12 months, I have been in the compassion business and yet, so often I feel like slapping people straight in the face because they refuse to be happy. Instead, they’ve buried themselves in a deep hole and I’m starting to wonder whether they actually prefer it there. You see, all the means of escape are within easy reach, but they completely ignore them.

There are many reasons for this. Perhaps, they don’t feel they can change their circumstances. They have been given a diagnosis, or label, that supposedly renders them helpless. Or, they are just a bit overwhelmed, shocked and befuddled and might need a bit of assistance. After all, when you are going through a hard time, it’s easy to forget that you might only be passing through and this isn’t actually your destination.

If you are currently submerged in a crisis, you probably think it’s easy for me to say and that I just don’t get your situation. That I don’t know how bad it is. However, can you be so sure? What do you know about me? What’s my story?

red shoes

Me in my fancy red dream shoes. I’m usually barefoot, especially in Summer.

I’m not in your shoes. That’s a good thing, too. There are times when we need  that external tough nut who doesn’t give us what we want but what we need. That tough cop you don’t want to meet when you’ve decided everything’s hopeless and you’ve settled for a living death.

You see, as much as you might think you want someone to come along with a blanket, tucking you in and bringing you meals for however long it takes for you to die in a physical sense, that’s not what you need. Instead, you need that really annoying, irrepressible coach who tells you to: “Move it! Move it! Move it!”

You need action and probably even the proverbial boot up the you know where!

So, my question for you is this: “Do you want to stay where you are or do you want things to change…even if it is only those little annoyances you haven’t followed up?”

What we sometimes forget when we’re intensely focused on what’s gone wrong, is that it can always get worse.Somehow, we manage to shoot ourselves in both feet in addition to whatever adversity has come our way. Sadly, this happens way too often and while it’s tempting to play the blame game, we also have to look to ourselves.

What are we doing to actually improve our lot? To give ourselves the best chance?

You see, we are actually so much stronger than we think and have the means within ourselves to improve our lot. Moreover, as we feel more and more empowered, we in effect shrink whatever beast is bringing us down. Through these victories, however small, we also find a sense of happiness which can help us overcome further setbacks. This is what’s called resilience.

Of course, if you’d told me all of this when I was having a “dooner day”, I would’ve promptly slapped you in the face and retreated even further into my bed. I have to admit my Mum was pretty keen to get me moving again after those many colossal teenage break ups and I really thought she didn’t get it. Didn’t understand me. However, at the same time, when you’re older and you see the long-range, bigger picture, how can you let your beautiful daughter go up in smoke over a stupid boy? How could I do it to myself? That old phrase: “there are always plenty more fish in the sea” might seem heartless but it’s true. You just don’t appreciate that when you’re in it.

“When we are helping someone, it is so important to enable them, NOT render them disabled.”

Rowena

When we are helping someone, it is so important that we enable them, and do not disable them. While we can gallop in on our white horse and save the day on their behalf and be the hero, wouldn’t it be better to teach them how to ride so they can experience the thrill of not only overcoming their particular adversity, but also gain the strength and pride of learning a new skill? Having a new experience which gives them a sense of victory and achievement rather than reinforcing: “You can’t do this. Let me do it for you.”

Well, this is all very well unless you’ve taken a direct hit. Sometimes you need intensive, ongoing assistance or you might know that someone who does. No amount of wishful thinking, prayer, medical intervention is going to change what’s happened.

Or, is it?

Rowena Quad bike

Here I am riding the quad bike. Of all the activities, this one took me most out of my comfort zone.

What I would like to suggest is that you try to find a way around the hurdles and see what is possible. A few years ago, I went away on an Adventure Camp with the Muscular Dystrophy Association. Beforehand, I wasn’t very confident about my physical capabilities and was very wary of trying new things. Of course, given my diagnosis, I had every reason to pull back. However, I knew that the staff knew and understood my limitations. This provided a sort of safety net, which allowed me to take on all sorts of unexpected challenges which took me way beyond my comfort zone. Ironically, probably the most challenging activity was going down a waterslide on the boat without my glasses on. I am so short-sighted that I’m literally blind without them and yet I went flying into the water and pulled myself back onboard. Did I feel weak, powerless and useless after that? NO! Of course, not! Rather, I felt triumphant…even after smacking the water nose first and getting water up my nose. That success propelled me onto further physical successes including riding quad bikes and ultimately skiing down a mountain (an Australian mountain so it wasn’t Everest but it was Everest to me).

These were huge monumental changes for me as I’d never been a physical person and was much more comfortable living inside my head and being the writer.

So, being in the compassion business but also being a survivor, the most compassionate thing I can say to you is… NEVER GIVE UP! I’m not talking about reaching dreams like becoming a millionaire or even one that’s very important to me…getting a book published. What I am talking about is never giving up on YOUR SELF and your ability to pull yourself out of the rabbit hole. This is not to deny the power of prayer and God’s strength but God didn’t make us powerless. He didn’t want us to be victims. He said pick up your mat. NOT… I’ll carry it for you and keep carrying it for you. We are so much stronger than we ever thought possible but we need to use and exercise that strength. Not let it go to waste.

While tough love might seemingly fly in the face of compassion, building strength instead of weakness is an incredible gift of love and what ultimate leads to a more enduring form of happiness.

P.S. The Back Story.

Sometimes I wish I had badges or scars which acknowledge the challenges I have overcome and survived. They would give me the credibility to share my story without people thinking: “What would you know? She’s happily married with two kids. She even has two dogs for heavens sake…and a roof over her head.” You probably wouldn’t even notice any physical proof of my struggles at all.

Yet, if you touched the side of my head, well camouflaged underneath my hair of course, you’d find a bump. That’s the shunt which manages a neurological condition, hydrocephalus. When I was around 25, I had brain surgery and it took a good 12 months just to get back to square one again…let alone fly. The doctor had marked my file with “full recovery” at the time and after six months, those words almost seemed cruel. What was he talking about? I still wasn’t back at work and that’s what a full recovery meant to me at the time. AND…it meant now!! This instant. I was stuck in a dreadful state of suspended animation, which is hard enough for anyone to deal with let alone when you’re young. I picked up photography in a very serious way during this time and looking through the lens, you see what you see and somehow become absorbed into it and out of yourself and your problems. I have no doubt that it helped my recovery. It also bridged that gap with the rest of the world who was working. It turned out that when I went to parties, people were much more interested in hearing about photography than work! I was interesting. Moreover, my stories about the flip-top head were also fairly entertaining.

Throwing humour at your bad luck, also turns things around. Prior to my surgery, I was living in a veritable twilight zone straight out of Oliver Sacks: The Man Who Mistook His Wife for A Hat. Even the horizon moved up and down when I walked, so it’s no surprised that I walked like John Wayne with a broad gait just to keep my balance! This wasn’t the kind of poise you wanted as a young woman or teenager! However, once I was on the mend, these stories were quite funny.

However, as much as we like to believe lightening doesn’t strike the same place twice, it can and it does. Just because it only got your head last time, doesn’t mean that it can’t try and claim the rest of you as well.

Following the birth of my daughter, my immune system went haywire, as it usually does. However, instead of returning to normal, my body started attacking itself when I developed an exceptionally rare auto-immune disease, dermatomyositis. It took 18 months to finally diagnose this beast. By then, most of my muscles had wasted away and I couldn’t dress myself, roll over in bed or put my daughter back in her cot. Ironically, she was still being breastfed and due to the nature of the muscle breakdown, I was still able to look after the kids and get them dressed. Because this thing had snuck up on me and we had no idea what it was, I had no appreciation of just how incredibly hard every single move had become. My feet felt like concrete trying to lift them upstairs and my body felt like a bag of rocks trying to lift myself out of the car yet I just kept going. That’s what you do. It wasn’t like I had a choice. I had two kids to look after so I was also fighting with all that I had, to keep them As soon as I was diagnosed, I was put in a wheelchair. Full stop.

Actually, it could well have been a full stop but it wasn’t. I had treatment and while there is no cure, I am better.

chemo sonata bw

This disease has been a determined blighter and I’ve had several close calls. I live with about 60% lung capacity and had chemo two years ago. I am still here. Not just the shell of who I was, but ME. I am very much alive. Life isn’t perfect. I am content but I am also reflective. I am conscious of my journey and how different things would have been but I’m equally conscious of the depth and wisdom I have gained, which I believe can only be gained through adversity. I also know that I am not the only one. That pretty much everyone has their lot, their burden to carry. So, now the question for me is less about the nature of the load and much more about how I’m going to get to the other side.

Rowena skiing downhill Fri

Skiing down the mountain at Perisher in August 2013.

How about you? Can you be happy in the midst of adversity?

xx Rowena

This month, 1000 Voices Speak for Compassion continues to work toward a better world with a focus on Compassion and Happiness. And, our monthly link-up date aligns perfectly with International Day of Happiness. How perfect!

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The Wisdom of Gratitude? #1000speak

Don’t talk to me about gratitude and being thankful for adversity. That worn out line about “what doesn’t kill us makes us stronger” has worn painfully thin with me.

Not that I’m one to complain. Of course not, I’m thankful. Always sunny side-up no matter what!

 

the kids & I

The kids and I taken during my 7 week stint in hospital 2007. Mister was 3.5 and Miss was 18 months old.

I personally don’t see any reason to be grateful that my life has been hanging in the balance for the last 9 years and that my daughter has spent every single day of her life with a mother living on the brink of death…sometimes more imminently than others. My son was 2, so things for him weren’t much better. When I was hospitalised for 7 weeks when they were small, my son stopped cutting, writing and developed acute anxiety…just even driving on a bumpy road: “slow down, Mummy”.  When I was in hospital and he looked at me through his huge brown eyes and blond curls and asked “Mummy better?” a knife plunged straight through my heart. We didn’t know if, when or how I was going to get better. So, I said nothing.

I didn’t feel any gratitude at all. I was angry. Actually, angry doesn’t cut it. Enraged. So incredibly sad I could have drowned in my own tears and yet as I fought so hard to save my life, the pain was so intense and I just wanted to die. I know that mightn’t make a lot of sense but who does in a crisis?

chair Umina Beach

So often, I’ve felt like I’m being swept away by the tide and yet I’m still standing.

You hear parents talk about the loss of a child and the unfathomable grief. How a parent is meant to die before their child. However, that doesn’t include the parent dying, at least in my book, when your precious children are still babies and Mummy isn’t even perceived as a separate being but part of themselves. It doesn’t mean children growing up without any memories of Mummy at all and just a bunch of photographs and other people’s words.

That is absolute, pure anguish.

It goes way beyond the disappointment I felt not being able to kick the football to my then 2 year old son or my heartbreak when I was too weak to get out of my chair after breastfeeding our daughter to sleep and my husband would carry her into her cot. Or, when we all had our day time naps and I couldn’t immediately jump out of bed to comfort my crying child because my muscles were literally being eaten away. I couldn’t move.

This all culminated in a horrendous fall at home when I was lying face down on the concrete unable to get up at all and my daughter was screaming, my son was somewhere and my husband was working in the Sydney CBD two hours away. The muscles I needed to get up off the floor had atrophied or wasted away. I can’t describe what it feels like when your very own home becomes a life-threatening battlefield.

However, while I wasn’t grateful at the time, I’m grateful now.

I am very grateful that after months of medical tests and misdiagnosis that my uncle, a dermatologist, finally worked out what was wrong when he saw me at my cousin’s wedding and rang me afterwards and booked the necessary tests. I was hospitalised for 7 weeks 2 days later. I was so sick that he told me to have complete rest. My muscles were breaking down and I can’t quite remember whether all this placed me at risk of a heart attack or what but I was very, very ill…diagnosed with a very rare neuro-muscular auto-immune disease called dermatomyositis.

My uncle literally saved my life.

Secondly, while my diagnosis was nasty and I was told there was a risk I had cancer and I’d be on prednisone for a very long time, I had treatment. This wasn’t a death sentence, although my case was severe and also quite resistant to treatment.

However, as much as the dermatomyositis was resistant to treatment, my medical team has been eternally persistent. I have a rheumatologist. lung specialist and a gastroenterologist who work together to fight this disease. I’ve had transfusions of Immunoglobulin or IVIG for 5 years every 3 weeks. As the disease started to cause inflammation and fibrosis in my lungs, they blasted it with chemo. They have metaphorically held my hand when the disease has flared and things have looked exceptionally grim and they re-jigged my treatment, asked our questions and simply been there for us and done their best. Right through, they’ve known I had young kids and what it would mean to lose their mum and they’ve given our fight their all.

Another reason I was particularly angry when I was diagnosed with dermatomyositis was that this was my second, exceptionally rare life-threatening disease and I wasn’t even 40. I’d been diagnosed with hydrocephalus when I was 25, which may have been caused by a very difficult birth and I’d had brain surgery to insert a VP shunt. I’d lost a couple of years recovering from that at a point in my life when i was supposed to be fun…not thinking about dying.

However, my neurologist has always been equally supportive. I wasn’t alone.

Newton Family & bilbo

A family photo with Bilbo as a pup Mother’s Day, 2007.

Speaking about not being alone, my family has been incredible. Not always perfect or handled things the way I would or would have liked but they’ve stood by me. My mother has put in an incredible effort with helping with our kids, supported by my Dad and brother as has Geoff’s sister and her husband. Friends have helped with minding the kids, lifts, talking them through some difficult moods and providing meals and encouragement. Churches have prayed for us and simply cared. We had support of Muscular Dystrophy NSW and the Myositis Association as well as local support agencies. Scouts has provided the kids with a space that’s fun and physically challenging away from the stress at home and this extra layer of community support and love is helping them to overcome adversity and feel strong in themselves. That they can stand on their own two feet. That they’ll be okay.

I consciously give thanks for each and every extra year I have because I already feel like I’ve exceeded my quota and that I’m well into extra time. Moreover, I’m doing pretty well at the moment.

Family shadow Byron Lighthouse Easter 2014

Our Family 2014- Byron Bay Lighthouse, Australia. The shadow is omnipresent but the darker the shadow, the brighter the light.

Just the fact that I’m still breathing is such a reason to give thanks but I’m not just breathing. I’m able to bring up my children. Be a wife to my husband, even if I am a liability. I can be a daughter to my parents and a somewhat active member of our local community…especially through photographing events. I also have what has become a very rare gift…time. I have always been very career focused and I haven’t been able to work since I had chemo 2 years ago. That would have destroyed the old me but now, in addition to my family, I have my blog, my writing, photography and so much more. All of this being very much proof that even when your world totally blows up and you feel totally decimated, you can salvage good things from the ashes and have so much to give thanks for.

So, even though I still live with dermatomyositis and am down to 59% lung capacity and live with incredibly uncertainty, I am still here.

The reason I am still here is due to medical research, science and my doctors. That even though there isn’t a cure for dermatomyositis, there is TREATMENT. Not just something that will give me an extra few months, and really little more than a delaying tactic…a matter of buying a little more, very precious time. I’ve been living with this for 9 years.

So while I am being thankful for the medical research which has kept me alive, I’d also ask you to think about those who currently don’t have effective treatment options and where funding for medical research is so desperately needed.

A friend of mine was diagnosed with Motor Neurone Disease a few years ago and was given 2-3 years to live and thank goodness is still with us. How I long to give her that magic pill which would instantly make for better, or at least, stop that disease in its tracks. The same with Muscular Dystrophy. These disease are both savage and while there have been improvements, so much more needs to be done and these diseases are so debilitating. Muscular Dystrophy also affects young people. They are the most courageous, inspirational young people I know but they are still young and treatment would make such a difference both for them and their families.

Heart Hands red heart

My son blew me away when he made a heart with his hands. His hands and arms were caked in green paint and I doctored the photo to produce this.

Another point of gratitude, last but not least, I am grateful for God’s guiding hand through all of this. My relationship with God hasn’t been easy through all of this. I have all the questions so many people also going through adversity have asked: “Why me?”, “Why does a loving God allow or perhaps even caused such suffering?”, “Why doesn’t he just pick us up and out of the road of disaster?” These questions are not easy to answer and I don’t believe there is one size fits all solution either. That God speaks to each of us differently, personally in a voice and message we can understand. I remember waking up one morning in hospital feeling so betrayed by God…absolutely rejected. It was like God focused all his wrath on little old me and pointed the almighty finger and ZAP…I was fried. However, it was a bit freaky for in the midst of my tirade with God, I heard this voice: “If it’s good enough for me, it’s good enough for you!”.

At least, I wasn’t being crucified. Things were looking up!

I’ve heard people with disabilties of chronic health issues say that they wouldn’t change their situation. That it’s part of who they are. However, I would do anything to get rid of the dermatomyositis and live without it’s omnipresent shadow.

In the meantime, I am grateful for all the love, encouragement and support I’ve had along the road. Thank you from the bottom of my heart.

Love & best wishes,

Rowena

 

 

 

 

Climb Every Mountain…Singing Towards Her Dream!

When you think of intrepid explorers and their conquests, rugged mountaineers immediately come to mind. Those brave or mad enough to not only scale the peak of Everest but even scratch the Seven Summits off their list.

However, I am incredibly proud of my intrepid Mighty Miss, who refused to let anything stand in her way and boldly insisted that Mummy filled out that application form to audition for the Sound of Music .

Miss as Gretal/Marta at her Musical Theatre performance in August.

Miss as Gretal/Marta at her Musical Theatre performance in August.

This audition wasn’t just for some local production, either. It is for THE Sound of Music to be held at Sydney’s prestigious Capital Theatre, starring alongside Cameron Daddo, Marina Prior and Lorraine Bailey…names which might not mean a lot of overseas but are huge mega stars in Australia.

This is the Australian Big Time.

Miss closely resembles Marta, aside from the fringe.

Miss closely resembles Marta, aside from the fringe.

Miss is auditioning for the role of Marta, the second youngest of the Von Trapp children.

Of course, this is all incredibly exciting and such an amazing experience…just to even get an audition.

However, the unsung story here is that against the odds, Miss has put herself out there against the very best. This is the same shy child who used to hide behind my skirts and didn’t speak.

Miss in Hospital

Miss in Hospital

Not only that, Miss has severe vocal nodules and has been seeing a voice therapist once a week for the past month and had been prescribed “voice naps”. She has been told to practice her breathing and have frequent sips of water just to speak, let alone sing and these were pretty strong words! After all, we couldn’t mess around.

These vocal nodules have developed not only from what is known as “vocal abuse” (ie shouting at big brother, Mummy etc) but also though reflux from a condition which affects her digestion….Gastroparesis, or delayed gastric emptying. Due to this condition, she has been markedly underweight and was struggling to get through the day before we finally found a diagnosis and she received medical treatment. She has since gained a bit of weight and perhaps grown up a little too. She is still petite but that’s a good thing too…just as long as she eats.

Under these circumstances, obviously attending such a big audition is not what the speech therapist prescribed and not wanting Miss to experience humiliating defeat, I naturally advised her “next time”.

However, her big blue eyes welled up and her body stiffened and that iron will I know only too well, rallied its troops: “But Mummy, you don’t understand. I’m the right height. I’m the right height now and I’ll never be the right height again.”

Humph…

Of course, you can just see my weaker will withdraw its forces altogether and concede defeat.

There was no point even going into battle. I filled out the forms.

What would be, would be and who was I to stand in the way of a little girl’s heartfelt dream? To knock her down before she even got started? After all, haven’t I been the one encouraging her to have a go and putting my foot down when that same iron will was shooting itself in the foot?

Miss on Stage Performing with her Musical Theatre Class.

Miss on Stage Performing with her Musical Theatre Class.

Ironically, the same small size which often infuriates her, will actually help her for this audition.

Marta is petite and Miss actually looks quite a lot like her, which I guess is also why she scored the audition.

Thank goodness, her vocal nodules have also improved a lot and she can sing clearly again.

So, we emailed off the application and I don’t know whether I expected her to get an audition or not because by the time the news arrived that she’d been successful, I’d caught a severe lung infection and my chest was rattling like an old jalopy. Given my auto-immune disease and the fibrosis in my lungs, this was looking like hospital and possibly worse.

Two years ago, I’d caught pneumonia and actually stopped breathing briefly one night, which as you could imagine, was absolutely terrifying and I could see I was heading back there again and needed to pull out all the stops. My GP switched me to some industrial strength antibiotics and I had 24 hours to respond or it was hospital. I was pretty sure they’d work as this had done the trick last time but the stress and also the question of knowing when and if I should go to hospital plagued us. We were weighing up the benefits of intensive treatment versus catching something even worse and it’s the latter that sees us aim to stay home.

I was also on the nebuliser every two hours.

Accompanying Miss while on the nebuliser. I personally find combination of preparing for the audition while being so sick and on the nebuliser almost comic. It's the first time I've been on the neb at home for 20 years. I have also playing chess with Mister while on the neb too.

Accompanying Miss while on the nebuliser. I personally find combination of preparing for the audition almost comic. It’s the first time I’ve been on the neb at home for 20 years and I’m only on it for a few minutes at a time. The photo just gives it a resonance, which is a bit over the top.

So, it was into this toxic germ soup of household that the news arrived of my daughter’s audition and that we needed to have her at the Entertainment Quarter at Moore Park in Sydney at 9.45 Monday 7th September.

At this point, I was barely able to stagger out of bed to the toilet a metre away and yet I really wanted and needed to be the one to take her. Do this audition thing with my little girl. Yes, to be the proud stage Mum and flaunt her unashamedly like a trophy but more to share the experience with her. Be an active, integral part of her life and be her Mum. Even if I needed to be in a wheelchair rugged up and attached to the nebuliser, I wanted to be there. After living with this wretched auto-immune disease, my own personal antagonist for so long, it’s not uncommon for me to take it on head-on and tell it in no uncertain terms, that it’s not going to stand in my way. “You are not going to come between my family or what I / we want to achieve. You’re not going to get us”.

Most of the time, we surprisingly win!

I really don’t know how and it actually astonishes me.

“Success is a function of persistence and doggedness and the willingness to work hard for twenty-two minutes to make sense of something that most people would give up on after thirty seconds.”
Malcolm Gladwell, Outliers: The Story of Success

“…educational psychologist Benjamin Bloom examined the lives of some of America’s most accomplished artists, athletes, and scientists. He discovered that drive and determination, not great natural talent, led to their success in their respective fields”- Howard C Cutler.

So, with only days to go, I am improving. Still a bit rattly but by Monday, I will be there with the Mighty Miss cheering her on. Not just because she can sing but because she has such incredible determination and willpower to overcome hurdles and setbacks and have a go.

Of course, in my mind, this is already a victory!

xx Rowena