Tag Archives: hydrocephalus

A Different Perspective – Friday Fictioneers.

“At least, you’re consistent at something,” her husband smiled. “Even when you photographed your shoes, the horizon’s drunk.”

“Huh?” Julie sat up, peering over her book.

“Look at the angle on those books. They’re completely out of kilter and that urn’s about to commit suicide.”

As much as she started to fume, he was right. No matter how much she jiggled the camera, she couldn’t get that damned horizon straight. Still, she posted the photo on eBay. After all, she was selling the shoes, not the books.

That’s when the penny dropped.

“Hey, Dave. I can’t touch my nose…”


This has been another contribution to Friday Fictioneers, hosted by Rochelle Wisoff-Fields and thank you to © Magaly Guerrero  for this week’s photo prompt. I highly recommend you check out the wide diversity of responses to the prompt. It’s more than interesting. It will open your eyes. Here’s the link

My take on this prompt is personal. I was born with a dormant form of hydrocephalus, which was largely asymptomatic until my mid-20’s when it pushed the accelerator to full throttle and I was thrown into a dreadful chaos from within. The horizon bounced up and down as I walked. I fell over a lot and the room used to spin. I also lost my short-term memory. Thinking it was stress, I moved to Western Australia and when I came home for Christmas, I went back to the GP who’d been treating me since I was 11 and I couldn’t touch my nose in what was a basic neurological exam. I had a battery of tests includes a brain scan, which showed what I refer to as “the harbour in my head”. I flew back to Perth and deteriorated very rapidly and had a VP shunt inserted 6 months later. That put an end to me living in Western Australia and I moved back to my parents’ place in Sydney and underwent intensive rehab for six months. It was a long road back with many stop starts. I have largely recovered from it, unless I’m under a lot of stress and I can’t really multitask or manage time well.

Despite being good at photography, I have great trouble getting the horizon straight. I don’t believe it’s related to my hydrocephalus and quite often I like a quirky angle. Yet, my husband always notices the horizon and even in a creative shot, he’ll comment on it saying: “the ocean doesn’t do that”.

On that note, I’d better get back to the real world. I don’t even have a list of what needs to get done today.

xx Rowena

Thou Shalt Get Walking!

After weeks of torrential flooding rain, the damn sun came out today and dried up all my excuses.

That meant, that I finally had to get outside and do “the 20 minute walk”.

Even if you barely know me at all, you’d know that I’m not the sort of person who goes timing their activities without some kind of outside intervention.

Enter the physio.

After two weeks on the “ten minute walk”, I’ve progressed to the “twenty minute walk” and while this should’ve generated that warm glow of achievement, it also pressed the panic button… just a little.

You see, doubling the distance, also meant twice as much opportunity for DISASTER!!

This wasn’t just anxiety speaking either. My tripping and crash-landing abilities are  legendary! Indeed, only two weeks ago, yours truly swan-dived right outside the test centre where my daughter was sitting for the illustrious Selective Schools’ Test. Of all the times to have a fall, this came pretty close to  being the worst. That said, at least I had loads of help getting back up.

So, this is why I was a bit wary of going for a 20 minute walk all by myself, even if it was a beautiful sunny day and the beach was calling. Our local footpaths are so bumpy, cracked and overgrown that they’ve become ridiculously rustic, death traps. You don’t even need to be accident-prone to fall.

However, being accountable for my exercise and needing to tick the all-important box on my exercise plan, magically propelled me out of the couch and onto the footpath.

First, however, I recruited Mummy’s Little Helper to act as walk buddy. This was not only so she could not only call 000 in the event of emergency, but also so we could also take the dogs for a walk. Miss took Lady, while I took a much stronger Bilbo and off we went….Miss telling Lady to stop sniffing and keep walking. Their pace helped to propel Bilbo along, although Miss did observe him trying to sniff every single tree and post along the way!

That reminded me of a couple of old dog jokes:

What’s the definition of torture?

A dog in a desert with no trees.

What’s the definition of confusion?

A dog in a desert with two trees.

However, Bilbo didn’t have the luxury of any lingering sniffs. That’s because he too was under the physiotherapist’s regime. The goal, or should I say the prescription, was 20 minutes of brisk walking, which is going to boost your heart rate and build a sweat. Obviously, this is not  a leisurely stroll smelling the roses…or anything else!

Bilbo staring out to sea

Bilbo…  who is either admiring the view or contemplating why he can’t smell the roses anymore.

By the way, the idea behind the 20 minute walk is to do a 20 minute walk…no more, no less. It aims to create frequency by surreptitiously sneaking into your daily routine, so you almost don’t realise it’s there. As if!

So what’s motivating my walks:

  • Increasingly the number of steps and kilometres on the health app on my phone. I have found this very encouraging and motivating….both when the results are positive and negative. You find out what you’re capable of and when your steps are low for the day, it encourages you to get back out there. Keep moving. Worth noting, though, that you do need to walk around with your phone to get accurate results. If you feel like cheating, you could also attach the phone to the dog, but you’d only be cheating yourself.
  • Increased fitness and strength leading to greater endurance.
  • Exercise helps prevent chest infections and improves lung health, which is critical for me!
  • Exercise & sunshine boosts your endorphins boosting your mood.
  • Enjoying the beautiful outdoors and spreading my wings by getting out of the house.
  • Running into friends on my walks.
  • Possibility of losing weight.

Before I head off, I’d like to exercise my bragging rights. Although I was feeling that a 20 minute walk was going to do me in today, by the time we reached the beach, we felt like talking the dogs down to the off-leash, dog section of the beach. I lost track of how long we walked for  but it was probably more like an hour. We ended up walking for 3.5km and reached 5,600 steps. This was a vast improvement on 824 steps on Friday and 2,650 steps on Thursday.

So, I deserve a huge pat on the back and my daughter gets a huge thanks…both from me and the dogs!

I thought you might find my walking progress encouraging and that if you’re having trouble getting started or sticking with it, that you can do it. We can do it. Please keep me posted on your progress.

xx Rowena

M-Mary Stevenson “Footprints” Replies.

Dear Rowena,

Thank you so much for sharing how my poem has touched your heart and helped you through difficult times. It sounds like our Lord guided you to Heidelberg and gave you the love and community you craved. I don’t know much about hydrocephalus but it must be such a relief that you finally found out what was going on and had the surgery. I can’t imagine what it would have been like being so far away from home with that time bomb ticking and having no idea what was going on. You have great courage.

Our Lord understands us better than we could ever imagine and leads us through dark valleys and into the light, filling us with his strength. I have never understood why bad things happen to good people but I trust that our Lord will carry us through it all.

You have probably read this passage from Isaiah 40 before but I find it so encouraging

The Lord is the everlasting God,
    the Creator of the ends of the earth.
He will not grow tired or weary,
    and his understanding no one can fathom.
29 He gives strength to the weary
    and increases the power of the weak.
30 Even youths grow tired and weary,
    and young men stumble and fall;
31 but those who hope in the Lord
    will renew their strength.
They will soar on wings like eagles;
    they will run and not grow weary,
    they will walk and not be faint.

Love and God’s richest blessings to you and your family!

Mary Stevenson

D-Roald Dahl: Letters to Dead Poets #atozchallenge

Dear Mr Dahl,

It is such a privilege and an honour to be writing to such a literary great. Indeed, it is incredibly humbling. I apologise in advance for writing such a long letter but I had no idea how many twists and turns our journey would take. Or, that the man who has made the whole world laugh, had endured so much grief.

When I was a little girl, you brought all my chocolate fantasies to life in Charlie & the Chocolate Factory and seemingly wrote about my own daughter in Matilda.  Even though she is little, she is very strong-willed, determined and capable. As a parent yourself, I’m sure you can appreciate how this iron will can be a force for good and let’s just say “not so good”.

DSC_9561

My daughter and I at Matilda The Musical in Sydney, 2016.

Anyway, now that I’ve captured your attention, would you mind just sitting still for a moment. NO! DON’T MOVE!!  I told you. SIT STILL. This won’t take a moment. The best way for me to see inside your head, is climbing through your ear. Just need to scrape away a bit of wax. No use trying your nose when you’ve got a cold. Ah! In like Flynn! I apologise or the ongoing discomfort while I pull out my map, compass and torch. When you’re walking around inside someone else’s head, you really need to be prepared. Don’t want any accidents, especially when I can be rather wobbly on my feet and I didn’t bring my walking stick.

Sorry for popping in on you like this but if it’s any consolation, I didn’t get a lot of notice either. I was simply walking along the beach with my dogs photographing the clouds, when someone or something, jumped inside my ear and suggested that I write Letters To Dead Poets. Not just any dead poets but the ones who have inspired and spoken to me. Lit that spark!

So here I am with my notebook in hand ready D for Roald Dahl. Indeed, I’m just peering out through your nose. So, please don’t sneeze! That’s NOT how I want to learn how to fly. That said, I’m open to other suggestions!

There is so much that I would to ask you and so much I’d like to share that my words and thoughts are flying all over the place, each with a mind of its own. Sounding like your Vicar of Nibbleswicke, perhaps I need to fly around in circles to make sense of my thoughts. However, should I go forwards or back? Goodness knows!

While I’d like to come back to you another time to ask you about your writing, this letter has assumed quite a different purpose.

Plane Crash 19th September, 1940.

Roald Dahl plane

I’d like to ask you how that plane crash in WWII changed and influenced your life. You fractured your skull and temporally lost your sight. Prior to the crash you were working in business for Shell and afterwards you emerged as a writer with such an incredible imagination…as well as a sense that something had changed in you.

As your biographer, Donald Sturrock noted in Storyteller: The Life of Roald Dahl:

“A monumental bash on the head” was how Dahl once described this accident in the Western Desert, claiming that it directly led to his becoming a writer. This was not just because his first published piece of writing was a semi-fictionalised account of the crash, but also because he suspected that the brain injuries which he received there had materially altered his personality and inclined him to creative writing.

His daughter Ophelia recalled her father’s fascination with tales of people who had experienced dramatic psychological and physiological changes – such as losing or recovering sight – after suffering a blow to the head. He also told her that he was convinced something of this sort had happened to him, as it explained why a budding corporate businessman working for Shell, without any particular artistic ambition, was transformed into someone with a burning need to write and tell stories. This hypothesis was doubtless attractive, too, because it pushed potentially more complex psychological issues about the sources of his desire to write into the background.

Nowadays doctors might well have diagnosed Dahl as suffering from what is called post-concussive syndrome. The initial symptoms of this condition are normally forgetfulness, irritability, an inability to concentrate and severe headaches. Dahl suffered from all of these. In some patients the symptoms disappear, but leave behind longer-lasting behavioral changes, which are usually associated with mood swings and an increased lack of inhibition. In some cases, too, it can also result in a fundamental alteration of the perception of the self.

With Dahl, these alterations were marginal, but they were nonetheless significant. His sense of embarrassment – already minimal – was further diminished, his sense of fantasy heightened, while his desire to shock became even more pronounced. He emerged from his crisis more confident, more determined to make a mark [1].

However, this plane crash was only your entre to the workings of the human brain.

Theo’s Dreadful Accident 5th December, 1960-  Hydrocephalus.

By some horrible twist of fate, while your four month old son Theo was out with his nanny, a taxi drove into his pram fracturing skull and causing hydrocephalus, or fluid on the brain. It was a horrific accident and he was lucky to survive. However, after some promising signs, his condition rapidly deteriorated and he had surgery to insert a valve to drain the excess fluid into his heart. This valve kept blocking putting him through surgery after surgery, each time further increasing the likelihood of permanent brain damage and blindness. So, you did what Dads do. You went to fix the problem. You knew a bloke who made hydraulic pumps or model aeroplanes which didn’t block and you linked him up with neurosurgeon and the Wade-Dahl-Till (DWT) valve was developed. While Theo’s condition improved and he didn’t need to use that shunt, their invention changed the lives of 3,000 children…thanks to the love for your son and your resourceful thinking.

My Journey with Hydrocephalus.

Like Theo, I also have hydrocephalus and quite coincidentally, we were born on the same day nine years apart. Given your sense of humour, I don’t know whether you’re now wondering  whether being born on the 30th July means you’re going to have expansive water views inside your head, or maybe not. Indeed, when I was first diagnosed, I pictured a cheeky cartoon character called Bart Simpson surfing inside my head. So, my imagination is alive and well too!

In my case, the hydrocephalus was probably caused by a particularly difficult birth and wasn’t diagnosed until my mid-twenties. For some reason, whatever compensating mechanisms I’d  had, suddenly stopped working and I plummeted into a terrifying neurological abyss. I had brain surgery to insert a shunt, followed by at least six months of intensive rehabilitation. By the way, my shunt also blocked.

Surgery launched me on the precarious pathway towards recovery but also a strange sense that something had changed. A feeling you also expressed.  Having a bruised or broken brain, isn’t the same as having a broken leg. You can seem quite alright on the outside and yet there are “complications”, subtle changes and with it, much confusion. These subtleties are not easily understood from within and are even harder to explain. I wish we could have talked about that. Perhaps, we could’ve nutted a few things out together, which not only would’ve helped ourselves but could also help our “colleagues”. I’m not talking about fellow writers here but you already knew that.

At the time, a friend mentioned that you had invented the shunt. That surprised me. After all, you don’t usually expect writers with such an extraordinary imagination, to be equally good at  “nuts and bolts”. I thought we were all dreamers lucky to have a toe dangling anywhere near terra firma, let alone both feet. However, there is always an exception and thank goodness for that!

Ever since my diagnosis, I have wondered how different my life would’ve been if I’d been diagnosed as a baby. Reading Theo’s story gave me some serious insights into just how different it could have been, especially if it had been symptomatic at the time. That was pretty scary. Although some things might have been easier, I’ve always suspected that I would’ve been that fragile, special child kept locked up in the china cabinet and only brought out on special occasions. There would have been no netball, climbing trees or undertaking other “risky” activities. No adventures at all…just sitting still.

Rowena camera 2

Who could have suspected that this little girl had a harbour in her head?

Yet, basking in ignorance, I learned to read when I was four, pulled off an Arts Degree with Honours from the University of Sydney. At 22, a friend and I boarded a KLM Flight bound for Amsterdam. We had open tickets and could stay away for 12 months. Our only plans were to spend 3 weeks in Paris. During that time, I did a solo poetry reading at the famous Shakespeare Bookshop where the likes of Ernest Hemingway had hung out. I didn’t know that then or that even the Proprietor, George Whitman, was a larger than life figure. I was simply an intrepid 23 year old backpacker from Sydney who’d self-published her anthology on a photocopier. That’s all.

Then, in my mid-twenties, these ripples suddenly and inexplicably took off with a vengeance, raged into a tsunami. There was no doubt then that surgery was a matter of life and death and my neurological functioning was seriously impaired.

So, to a large extent, I don’t need to imagine what it was like for your family when Theo was struck down, although he was so much younger. After all, it’s very rare that even when two people are travelling along very same road, that they walk in the same shoes. Have the exact experience. The story always veers left or right but there’s still that common ground. By the way, I also remember my Dad thinking about how the shunt was made, why it blocked and how to manage the pressure.

Anyway, that was my story. Unfortunately, your affair with the Neurology Department wasn’t over yet.

roald-dahl-family-large

Roald Dahl photographed with wife Patricia Neal and children Olivia and Theo

Your Wife – Actress Patricia Neal – Has  A  Burst Aneurism – February 1965.

In February, 1965 while pregnant with your fourth daughter, Lucy, your wife had a burst aneurysm. Following emergency surgery, Pat remained in a coma for almost three weeks, lying on an ice mattress to minimise swelling and besieged by tubes. Antibiotics to prevent infection and anticonvulsants to prevent further damage to the brain dripped constantly into her system. You sat by her side, hour after hour, endlessly repeating: “Pat, this is Roald.”

For days there was no improvement in Pat’s condition. But on March 10, almost three weeks after the haemorrhage, she began to regain consciousness and went home a week later.

However, as Pat struggled to put her thoughts into words, to teach herself the names of colours, to work out how to use her right arm and feed herself, she became overwhelmed by the awareness of exactly what she had lost. The fact that she was pregnant, also made relearning how to walk particularly exhausting. You later described her condition in stark terms: “If left alone, she would sit and stare into space and in half an hour a great black cloud of depression would envelop her mind. Unless I was prepared to have a bad-tempered desperately unhappy nitwit in the house, some very drastic action would have to be taken.”

Apparently, your methods were Spartan. No self-pity, no indulgence toward the illness, just a determination to beat all the disabilities. With an approach based on “common sense”, your aim was to avoid “inertia, boredom, frustration and depression” and “get me to do it myself”. You sent her for physiotherapy at a nearby RAF military hospital. Then each day, between nine and 12 in the morning and two and five in the afternoon, you arranged for friends and neighbours to visit. These amateur therapists read children’s books to her and played elementary word games, simple arithmetic and puzzles…activities to stretch her mind.

On New Year’s Day 1966, you publicly raised the stakes on your wife’s recovery, telling the press that he felt certain she would be “working again within the year”.

After knocking back a few roles, finally, Edgar Lansbury offered her the lead in a film version of the Tony Award–winning play: The Subject Was Roses by Frank Gilroy. Pat liked the part of Nettie. Her therapist Val Eaton Griffith convinced her to accept it.

Yet Pat remained anxious that she was not ready. Val, however, had already persuaded her to deliver a speech in New York in March 1967. You wrote the text of her address and Val coached Pat on it daily for a month, before accompanying her to New York for the celebrity dinner.

“An Evening with Patricia Neal” was a fund-raiser for brain-injured children held at the Waldorf-Astoria. Her speech won her a standing ovation. The adulation stimulated her desire to recover and she began to believe she might pull off the movie comeback.

That night she saluted you for your efforts. Later, she would articulate her gratitude more eloquently: “I knew at that moment that Roald the slave driver, Roald the b—–d, with his relentless courage, Roald the Rotten, as I had called him more than once, had thrown me back into the deep water. Where I belonged.”

Mr Dahl, I appreciated your patience with me or going over what must be old ground or you. However, I wanted to share the gallant way you fought to save your son and your wife. It would be such an encouragement to people affected by neurological conditions. It is my hope that people will read your story and feel great encouragement. That through hard work, persistence and courage they can improve their lot, even if they can’t go back to how things were before. They still have a future.

Wait…There’s More!

However, these rendez-vous with the Neurology Department were only the tip of a huge iceberg of grief. Despite your career’s stellar success, tragedy was seemingly just around every corner.

When you were only four years old, your seven year old sister, Asti, died. Overcome by grief, your father succumbed to pneumonia a few months later, leaving your mother to carry on. Then in 1962 when you were still dealing with the aftermath of Theo’s accident, your much loved daughter Olivia died from encephalitis due to complications from measles. Olivia was also seven…the same age as your sister.

Surely, you had to ask yourself, God and the world what all this insanity was all about? Why do such awful things happen to good people? Why are so many rotters out there still walking round alive, when your angel’s been snatched away?  Now, I can’t help wondering if these thoughts were going through your mind as you wrote Charlie and The Chocolate Factory in the aftermath of Theo’s accident and your daughter’s death? One by one, the horrible children in the story disappeared until only Charlie was left. Was this your way of trying to grapple with your all-consuming anguish? Was this your way of saying that it should’ve been the other way around? That all the horrid people of this world should have been taken and your Olivia spared? I wouldn’t blame you for flying away in that great glass elevator either and somehow trying to find the happiness you’d lost.

Having picked up some of your bits and pieces, I can’t help but sense that you were caught up in a macabre, nightmarish déjà vu where the nightmares of your past repeated themselves and yet the characters and scenery had changed. I’m sure that trying to make sense or unravel it all had to be a burning obsession. How do you explain the strange happenings in the universe? What are you supposed to do with the all the random, floating pieces which haunt you in the night? Do you turn them into stories? Develop a sense of humour which something turns the darkness light, and the worse it all gets, the funnier you become? Is that how you wrote your greatest work: Charlie and the Chocolate Factory while coming to grips with your son’s accident and then losing your beloved daughter? You somehow ended up righting this cruel world by giving a poor working class boy the golden ticket and he is the one who ultimately gets the chocolate factory. His fortunes turn completely upside down and goodness and order is restored. There is some sense of fairness in this world and the knowledge good will triumph over all the bad, even though there is utter heartbreak all around you. Why was your beloved Theo, an innocent baby simply lying in his pram hit by a random out of control taxi and how could he fracture his skull and lose his sight (albeit temporarily) when you had also fractured your skull and lost your sight when your plane crash during WWII? How could your beloved daughter Olivia who was so vibrant, intelligent and alive suddenly contract measles and then die from encephalitis, a rare complication? It was hard enough for you to lose your daughter but she was only seven and the same age when your older sister, Asti died…a death which seemingly  led to your father’s untimely death from pneumonia only a few months later and left your mother battling to hold the fort. When you lost Olivia, did you also wonder whether you would succumb like your own father? That you wouldn’t survive? After all, you seemed to be following the same script. Yet, it was during this time that you wrote your greatest work Charlie and the Chocolate Factory. However, a few years later, your wife Pat had a series of strokes following a burst aneurism while pregnant with your daughter Ophelia. While many would’ve packed the towel in by now, you sat by her bed side and spoke with her: “Pat, this is Roald” over and over again. No doubt you remembered what it meant to be all alone in the neuro ward and that incredible, crushing despair and you fought that beast with everything you had devising a gruelling rehabilitation program which might had had her cursing but brought her back.

Yet,while you’re family lie was travelling through hell, your literary career was  travelling along a parallel street enjoying success. In 1961, James and the Giant Peach, your first famous book for children, was published. You had started working on Charlie and the Chocolate Factory shortly after finishing James and the Giant Peach and it as published in September 1963, initially in the USA with the UK following a few years later. Apparently, the idea for Charlie and the Chocolate Factory grew out of your love of chocolate and your experiences as acting as a taster for a well-known chocolate factory while at school.

I don’t think you or I can even begin to unravel or explain all of this but I do hope that by reading about how you suffered so much and truly knew the full meaning of anguish that it will give the living hope. That you could go through all of that, not give up and still laugh and seize the day.

I have found this poem very encouraging:

“Hope” is the thing with feathers – (314)

By Emily Dickinson

“Hope” is the thing with feathers –

That perches in the soul –

And sings the tune without the words –

And never stops – at all –

 

And sweetest – in the Gale – is heard –

And sore must be the storm –

That could abash the little Bird

That kept so many warm –

 

I’ve heard it in the chillest land –

And on the strangest Sea –

Yet – never – in Extremity,

It asked a crumb – of me.

 

So, after what has been a very extended journey, it’s now time for me to pack up my bag and find my out. At the same time, something, tells me this letter is only the beginning.

Warm regards

Rowena

Roald_Dahls_Grave,_Great_Missenden_(geograph_2373400)

Sources

 

[1] http://www.telegraph.co.uk/culture/books/7934421/Roald-Dahl-the-plane-crash-that-gave-birth-to-a-writer.html

Donald Sturrock, Storyteller: The Life of Roald Dahl.

 

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

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Writing Memoir: Unpacking the Past.

While being November, there’s been a lot of talk in the blogosphere about NaNoWriMo and many have leaped onboard the Nano juggernaut. How many words have been written. How people are progressing towards their target. Or, if things aren’t progressing as hoped, there are tips, words of encouragement and probably even a stiff drink or caffeine hit as well.

Being the sort who’s usually easy lead astray, I almost jumped onboard the NaNoWriMo juggernaut myself. However, thankfully I recognised a distraction for what it was and kept walking. I am quite proud of myself because I usually lap up such distractions and wake up in a different universe before I realise just how far off course I’ve ended up.

However, even though November in Sydney is a lousy time of year to embark on any kind of lengthy writing project, after almost ten years of fiddy faddling around with the Book Project, I am finally making headway. I bought myself a set of multicoloured cards and a file box, a box of black pens and a packet of multi-coloured pens and the research process is well and truly underway. Of course, buying the pre-requisite stationery is an important precursor to writing. However, I’ve also progressed to typing up excerpts from my Paris journal, revisiting Paris through Google Earth and getting in touch with people I met.I’ve even been re-working poems and writing new ones.

The Book Project is on. It’s definitely on!!

However, I always knew writing this story wasn’t going to be easy.

Of course, writing any great story isn’t usually easy. It’s exhilarating but there’s usually at least some kind of hard work involved…or much angst. As much as angst hurts and even destroys, it also does wonders for my creative juices…just like some huge, salivating slobber-dog eyeing off a bone. (Remember Beethoven: https://www.youtube.com/watch?v=ShFd7rYSTkE)

Writing on the Window Sill at the Hotel Henri IV July, 1992.

Writing on the Window Sill at the Hotel Henri IV July, 1992.

At the moment, I am immersing myself in the Paris part of the story. While in some ways Paris might sound a bit clichéd and what hasn’t been written about Paris? However, I was an Australian in Paris and this story is going to land in Australia and even criss-cross the Nullarbor a few times between Sydney and Perth and even head North up to Geraldton. So, it’s not your classic Paris story at all!!

George and I at Nature's Window, Kalbarri North of Perth in 2002.

George and I at Nature’s Window, Kalbarri North of Perth in 2002.

I know I’m sitting on a great story. That’s not a point of pride or showing off. It is an adventure where the landscape reflects an inner journey searching for all those answers that we look for in our twenties yet through a distorted perspective. I had undiagnosed hydrocephalus, or fluid in the brain, which was an absolute time bomb ticking in my head which ultimately exploded. Yes, it wasn’t pretty either!

However, brain surgery, family friends, my faith and much reading and soul searching brought me to a place of healing. Not perfection but healing…an important distinction!

My husband and I met in the aftermath of that catastrophe and he loved me and accepted me (well, most of the time) for who I was. It was as close to an unconditional love as you could find and we’ve been through immense struggles, argued, almost fallen apart but we’re still together. We’re still walking together…along with our kids and the two dogs.

Our Wedding Day

Our Wedding Day

One of the troubles I’ve had with writing the parts of my story before meeting my husband, is that they do not involve him. That’s awkward in itself because like most of us, I’ve shut the door on all of that and we don’t talk about it. We don’t need to. However, through writing a memoir, it’s inevitable that a lot of this other stuff is going to dug up and even if it didn’t involve sex, there were intimate emotional attachments and these also encroach on what we have. After all, a marriage isn’t just about sexual fidelity. It’s also about sharing yourself, your heart and soul and grey matter.

When writing a memoir, there can potentially be a very broad cast of what might be minor characters in my story yet they’re still the protagonist in their own life. They don’t need to end up being a character at all. They’re just hiding under a rock and no doubt want to stay there in peace.

I need to respect other people’s privacy and also their need to have their integrity left in tact. They need to be able to walk down the street and feel good about themselves no matter what someone might have written about them. That’s even when it’s tempting to wield the pen, when you can’t use a sword. A bit of poetic justice might feel justified but writing a book is a responsibility. I am carrying all these people on my shoulders through what I say and also what I don’t say.

It’s no wonder I haven’t told this story before.

However, it’s a story that needs to be told. Too many of these motivational speakers and writers out there are selling false dreams. That if you want something bad enough, you can make anything happen. That’s just not true and it makes people feel like losers when they can’t pull of such miracles for themselves. Indeed, when they find out they’re only human!

I have had some incredibly dark moments along the road and these happen. People, especially young people, need to be equipped to get through and learn the incredible lessons these moments give us rather than avoiding the struggle or giving up but I also believe they often need a helping hand.

I’ve also got to be honest and say that I want to make it as a successful writer. I want that book published with my name on the spine and I want a bit of credibility. At the moment, I’m a gunna-do and that is even worse than being stuck in a real job.

Hey, Ive just written  1,074 words about getting started. I wonder if that counts towards the word count? Actually, I think it reads like a Mission Statement. A rather long one but something to keep me going.I’m going to need to remember why I am doing this and the hours mount up.

Any thoughts or suggestions? I’d love to hear from you!

xx Rowena

PS: I’m excited!

Poet in Paris 1992: Maestro

I wasn’t allowed to touch you.

Yet, you played my heartstrings

like a maestro making love

to his cherished violin.

Mesmerised by your song,

I swooped deep into your soul,

forgetting even how to fly

because we were one.

You and I connected through

a love far deeper than touch

our spirits knitting together,

stitch by stitch, into one.

You spoke my language.

Sang my song.

How could I ever grasp

why our love was so wrong?

That when spirits knit,

man and woman always risk

flying into the flame.

A flame which can burn!

That two should never

blur into one.

We each need to walk

in our own pair of shoes.

I was but young

but you…

you were not.

You should have known!

After playing on my heartstrings,

finding my song,

you cut me off with a knife.

Threw me back in the pond.

Alone, late at night

on the banks of the Seine,

La Belle Dame Sans Merci,

I am haunting this city of pain.

Yet, soft in the distance,

a violinist plays Vivaldi’s Spring.

A bud of hope in the darkness,

I now hear the baby birds sing.

Rowena Curtin Written 8th November, 2015 reflecting back on Paris July-August, 1992.

I know most poems are meant to stand alone and not come with some sort of dictionary or encyclopaedia attached but since when have I followed convention and why should I start now.

Here’s a bit of a backstory to Maestro.

It is very exceptional for me to write a poem and put it out there in any way, shape or form, on the day I wrote it. I am a great believer in stewing the words and making sure there’s a well-developed sense of flavour and complexity expressed as simply as possible. My Dad would say that I treat my writing like a fine wine. It needs to mature.

However, this is an old story so it’s been stewing long enough. Although, I could probably tweak it a little more here or there, this poem also tells a story and I don’t want to change that story just to produce a perfectly structured poem with perfect rhythm. It’s a very intense poem and intense emotions are jerky, uncooperative and don’t just flow. They’re awkward.

In this instance I am writing about a terrible heartache I experienced as a naive 21 year old in Paris when I was backpacking through Europe. I spent much of the trip actually living in Heidelberg, Germany and through Church I made an incredible soul mate who was never going to be more than a friend and yet I guess it’s almost inevitable that one of both of us was going to get burned. Not in the usual sense of a romantic involvement but while I still believe men and women can be friends without things crossing the line, there’s a difference between being friends and sharing each others’ intimate thoughts and feelings. Perhaps, you are made of tougher stuff than I. HOwever, in my experience, somebody usually gets burnt to an absolute charcoaled crisp.

At 21, I didn’t understand all of this and just bounded in where angels feared to tread.

I haven’t thought very much about this situation for a very long time. Now, happily married with two kids and two dogs, it’s a very long time ago. It’s only because I’ve been researching my time in Paris that I’ve been revisiting this very closed book.

Poets have a reputation for being a bit “emotional”, “intense”. I was all this and more in Paris. Leaving our hotel very late at night and writing beside the Seine til something like two in morning as orange reflections danced along the river near Pont Neuf, I was so out of my mind with grief that I perceived the dangers but was somehow detached from my self, almost an observer. Fortunately, I was staying with friends, who helped patch me up a bit but also realised I wasn’t good. They put me on the train back to Heidelberg. It was either that or go home. I was fortunate and very blessed to be welcomed into quite an expansive Church community there and lived with a German family I had stayed with before. All these people really were angels in disguise.They took me in as a stranger and brought me back from the brink.

It took quite awhile to find my feet and over time, I came to understand that another force was at work. That my desperate need to be understood and connect were borne out of an undiagnosed medical condition. That I actually had a harbour in my head, which was placing pressure on all sorts of areas of my brain, with, in many ways, quite intriguing results.

This harbour is known medically as hydrocephalus or fluid in the brain and was possibly caused by my very difficult birth. When I was 25 and had moved to Geraldton in Western Australia thinking I was “stressed” and once again was pursuing “love”. I was having trouble with this spinning sensation. Feeling dizzy. When I flew home for Christmas and visited my GP, I couldn’t touch my nose and this was just the beginning of my rapid descent into neurological chaos. I ended up having brain surgery where they inserted a shunt to drain away the fluid and to manage the pressure. It took over a year to recover but the surgery made an incredible improvement.

When I look back on this brain of mine, it really was a ticking bomb and I had no idea what was going on in between my ears. I know I often say that about my kids but in my case, it was incredibly true.

I have wondered how different my life would have been if I’d been diagnosed when I was younger. While it might have made many things easier, I have no doubt that my parents would NOT have given me that ticket to Europe for my 21st. That I would have been wrapped in cotton wool and been considered “special”. Potentially too special to really live. I am really glad that I was able to experience independence and stretch my wings, even though I had a few more crashes than most but at least I saw the world.

By the way, just a point on the violin references, I have been learning the violin for the last 3 years and I’m currently learning to play Vivaldi’s Spring. There are a few tricky bits and my teacher beautifully explained how Vivaldi was trying to mimic the sound of the baby birds…the sounds of Spring. So, not unsurprisingly, these images have entered my verse.

I don’t always like a happy ending and perhaps prefer something more realistic. However, considering the anguish in these Paris poems (yes, there are a few), I also like to offer a bit of hope because I didn’t stay stuck in that very bleak pit of despair. Although it took awhile and a lot of support, I did get through.

I am hoping that by sharing this experience, that perhaps I can encourage people to hang in there through the valley and hope and pray that the light will return. That things will improve.

Anyway, if I don’t get to bed soon, a different light will be appearing…the sun.

Thank you so much for sharing this journey with me. It means the world.

xx Rowena