Tag Archives: hydrocephalus

I Isabel Bishop…Letters to Dead Artists, A-Z Challenge.

Welcome to the Letter I! As you may be aware, my theme for the 2018 Blogging A-Z Challenge is Writing Letters to Dead Artists.

Unfortunately, I couldn’t come up with an artist starting with “I”. So, I had to hit the pavement. Go out on the prowl and pick one up. Since no one was throwing a party, I was back to my old friend Google, who never fails to deliver “something”.

Initially, I was going to write to Australian artist,  Jean Isherwood, who painted a series honouring Dorothea McKellar’s iconic poem My Country. However, since most of my readers are from overseas, I decided to look further afield. Finally, I stumbled across American artist, Isabel Bishop, and let’s just say there was a spark across a crowded room…

What initially attracted me to Isabel Bishop’s works, was her paintings of young office women in New York’s Union Square. Although they’re clearly from a different era, they reminded me of myself as a young woman working as a marketing professional in Sydney’s CBD. When I look at her Young Woman 1937, there’s real determination in her eyes. She’s heading somewhere. I also felt myself drawn into Tidying Up and could well imagine myself looking in a mirror and touching up my lipstick on my way to a meeting, or heading out for Friday night drinks. Yes, these people were very familiar.

Isobel Bishop Tidying Up Indianapolis Museum of Art

Isabel Bishop, Tidying Up, Indianapolis Museum of Art Collection

Moreover, I’ve also walked through crowded city streets. Squeezed onto over-crowded trains. While I’ve never been to New York, in so many ways, these scenes are even more familiar to me and my world than scenes of the Australian outback. I know what it is to be caught up in the rush of a thousand feet. Indeed, when I was in Sydney with my daughter the other day, I was taking photos as we walked through Central Station Tunnel. It’s a very long pedestrian tunnel and like Union Square, hosts such a menagerie of life…buskers, beggars, the homeless, vendors selling The Big Issue… There’s also that same sense of movement, which preoccupied her work. It’s a movement which I find a little scary, because it seemingly has a life of its own. You’re being pulled along or sucked through this tunnel, and there’s this suction you can’t escape. That if you fell, which for me is quite a possibility and indeed, I was using my walking stick, I’d be trampled underfoot and  disappear…a modern casualty.

Not that Isobel Bishop, portrays the subway in this way. That’s just the horrors of my own over-anxious, catastrophizing imagination and I won’t even blame the movies.

Anyway, I wasn’t satisfied with a fleeting superficial introduction. I had to delve deeper. Find out what made her tick…and tock. What was she thinking? What was important to her?

I read a few bios, but there were no quotes and no real sense of the woman behind the canvas. Then, I fortunately stumbled across an aural history interview from 1959. Yet, although this interview spanned 25 pages, there was only one anecdote which stood out:

ISABEL BISHOP: Well, for an anecdote — this is a silly thing that happened a long time ago. It hasn’t great significance, but it was rather shocking to me. I had gone to Union Square where I had been for years of making little pen drawings because I found them so refreshing to me, and I was doing this and a drunk who was next to me said something which I didn’t answer. I simply went on drawing, whereupon he got up and collected a mob, and this was a most appalling thing because I had been drawing over there and he went and got this man and others and they surrounded me like this and he said, “What do you mean by drawing my picture?” And I and he pulled my book, and his hostile crowd gathered around me, and he said, “She sells them to ‘Life’ magazine.” And I told them no, and there was no use arguing with them. They really were very hostile. So I tore the page out and gave it to him and rescued the book just simply for the sake of my own sense of things and progressed slowly toward the edge of the park. I posted myself by the side of a bench where a neat-looking man was sitting, and I began sketching again because I felt that this is my square, and if I simply shrivel — I mean I’d be routed and it would be no longer my square. This is an issue of the greatest importance. So I drew again with these people hovering around and saying , . Whereupon this man I was counting on, you know, to stand by me, got up and joined them, and “What does she mean? Let’s run her out of the square. What is she? Is she the capitalist or something equally obnoxious?” So I did leave the square and approached a policeman nearby and said, “These people have prevented me from drawing in the square.” And he said, “Do you have to draw in the square?” And he wouldn’t come back with me or do anything about it. So I felt deeply hurt and, though I still live there, I don’t draw as much in the square for it just simply hurt my feelings.

HENRIETTA MOORE: That’s why you went underground?

ISABEL BISHOP: That’s right. I was driven underground. I find no one watches me at all. I draw down there and nobody notices me. 1″

I’m not sure how much this reveals about Isobel Bishop the person, but it was a good story. It provides something of her, the artist behind, or perhaps I should say, in front of the canvas.

One last thing I wanted to mention, is that Isabel Bishop was married to a neurologist. That was quite a red flag to me. If you’ve been reading through this series or following Beyond the Flow, you might recall that I live with the neurological condition, hydrocephalus, or fluid on the brain. It was only diagnosed when I was around 27 and despite having an Honours degree from the University of Sydney, my mental capacity plummeted on just about every front…memory, movement, personality the works. The ambitious, career-focused young woman was dead in the water and I never really came back. Sure, I had surgery and they put in a shunt to drain away the fluid and reduce the pressure (my head must’ve been something of a pressure cooker with stew spitting out my ears beforehand.) However, I was different. As soon as I woke up, I knew someone had turned down the volume. I don’t think about this very often. The wound is still so raw, that if I even touched it with my pinky, I’m know there’d be a never-ending scream. Yet, life goes on. I became someone else. Paradoxically, in many ways, I was allowed to become myself. After all,  I really am more of a writer and creative than a business soul. Pursuing that almighty career, had cut me off from all of that.

Anyway, without any further ado, here’s my letter to Isabel Bishop…

Letter to Isabel Bishop

Dear Isabel,

A few nights ago, I stumbled across your work online, and was touched by your portrayals of young office girls and how you brought them to life. Indeed, you took women out of the home and opened their horizons back at time when the world was just opening up.

Thanks to these trailblazers, women like myself could launch themselves into the business world without a second thought. Well, as it turned out, there was a second thought further down the track, as we tried to launch through that invisible glass ceiling. Important principles of gender equality, like Equal Pay are still a dream.

What is wrong with the place? How can what’s between your legs determine your pay packet and your trajectory up the corporate ladder, instead of what’s between your ears and how hard you work? You don’t hear much about this anymore but occasionally the ripples rise up into a wave, and actually make it onto the news.

However, this is not my battle anymore. I’m just trying to make it out the front door. Have a coffee with a friend. Actually, seeing my friends has also become something of a pipe dream. We bump into each other somewhere for a passing chat, but who has time? Who can find a mutually vacant hole in the uber-busy schedule? How I’d love to stand around and chat to my friends like the young women in your paintings, especially without someone telling me to hurry up and putting me down for talking too much. Is it asking too much to borrow ten minutes from “mother time” to be myself?

Humph. I had no idea I was going to share all that with you. It just came out…an impromptu rant. I’m sorry, but I won’t delete it. Cover up my longings like you might paint over a mistake. I wrote it. It’s out. Let those thoughts have their own life, and see what comes back. Not everything is meant to be covered up or painted over.

By the way, I’d love to spend a week sitting with you in Union Square. I’ve never been there, or even to America but I’d love to see it through your eyes and hear more stories. Not just about what it was to paint, but also to be there. Absorb it all like breathing…in through your eyes, and out through your pen and brush. How incredible!

Warm regards,

Rowena

PS Thought you might like to hear this again: Frank Sinatra: New York!

Letter From Isabel Bishop

Dear Rowena,

Each person has their own patch of ground…their own road to walk. Not that I’m suggesting that we’re islands, but you can only ever be yourself. That’s like a symphony with so many different notes and instruments coming together, that often it becomes a cacophony, and not a song. That’s okay. We often make noise, before we find our song.

Don’t be so hard on yourself! It just takes some of us longer than others. You’ve had some pretty monstrous challenges, and yet you minimise how far you’ve come. Try to be the violinist or the dancer who has conquered the odds. Yet your capacity to write and express the challenges of the human soul, didn’t pop out of a box of Cornflakes. You made that happen. No one else.

Just because you haven’t finished that book yet, don’t put yourself down. You’re still finding your words, and getting closer every day. Your time is just around the corner. I can sense it. Indeed, you should go and get one of your notebooks and etch your name on the spine. Feel what it is to have your very own book. Feel it in your gut, your soul, in every part of your being. Only then, will you have enough faith to make it happen.

Good luck.

Best wishes,

Isabel.

PS Stick this photo montage up on your wall. Have faith!

Sources

1 https://www.aaa.si.edu/collections/interviews/oral-history-interview-isabel-bishop-12431

http://www.phillipscollection.org/research/american_art/bios/bishop-bio.htm

 

Letters to Dead Artists Weekly Round-Up… A-Z Challenge.

Phew! I somehow made it through the first week of the A-Z Challenge. As you may be aware, my theme for 2018 is: Letters to Dead Artists. This is a sequel to my 2016 theme: Letters to Dead Poets. This was inspired by the tradition of leaving letters on the graves of dead writers, musicians, artists in Paris’s Pere La Chaisse Cemetery which I visited with a group of friends in 1992 as a 22 year old Australian backpacker. We’d all just finished university and I was taking a year off to meander around Europe.

Much of the time, I lived with a family in Heidelberg Germany  who literally took me in off the street. This time in Europe forms the backbone of this series as I did something of an art museum crawl from the Van Gogh Museum in Amsterdam, to the Alte National Gallerie in Berlin; the Louvre, Musee D’Orsay and Musee Rodin in Paris, the Uffizi and Accadmia Gallerie in Florence and the British Museum in London. There might’ve been more but that was over 25 years ago.

By the way, I should also mention that my History Honours thesis looked at the arrival of modernist art and literature in Australia and how it clashed with the established cultural elites and efforts to establish and maintain a uniquely Australian culture, which was associated with the bush at the time.

We don’t often have the luxury of reflecting back on the great minds which have influenced us, and helped to make us who we are. In addition to the minds, are the compassionate hearts who’ve taken us in when we’ve been engulfed by the vortex or haunted by horrific memories and nightmares which we can’t really put into words to share with our nearest and dearest. We need a hand and I swear some of these artists, especially Van Gogh, have swept me up and carried me in their arms through hard times and cried my tears.

Another factor influencing this series, is my undiagnosed hydrocephalus, or fluid on the brain. I was 27 years old when my neurologist finally discovered the harbour in my head, which was putting incredible pressure on just about every part of my brain. Even my sight was affected, as the pressure built up behind my eyes causing nystagmus. Despite this harbour in my head, I graduated from the University of Sydney with a Bachelor of Arts with Honours in History. I spent nine months overseas, although I was very troubled much of the time. I also wrote well and used to do performance poetry. I read at a number of events in Sydney, but the climax was doing a solo reading at the famous Shakespeare Bookshop where the likes of Hemingway, Henry Miller and Anais Nin hung out in Paris. Indeed, its proprietor, George Whitman, was a character in his own right. However, by 1995, the hydrocephalus was starting to break its banks and a year later, the ground moved up and down as I walked, I was falling over a lot and my short term memory was shot. It was a huge descent straight into the abyss, especially for someone who’d always valued their brain. Was a thinker. It was a grief that had no sides, and yet my medical report promised a “full recovery”. It just took time.

In typical fashion, my thoughts have gone off on a bit of a wander. However, you stare deeply into Starry Night, Venus de Milo, the Little Dancer, On the Wallaby Track or The Harbour Bridge in Curve, and you’ll be seeing more than sunflowers.

Anyway, here’s a list of last week’s letters:

A- Alexandros of Antioch

B- Sandro Botticelli

C- Grace Cossington Smith

D-Edgar Degas

E- Eileen Agar

F- Frederick McCubbin

G- Vincent Van Gogh

When I spotted a world map printed on a cork board, a decided to plot where the artists were born and connect them with ythread of red wool, representing the Red Thread of Fate or Pinyan. Chinese mythology has it that the gods tie an invisible red cord around the ankles of those that are destined to meet one another in a certain situation or help each other in a certain way. Often, in Japanese and Korean culture, it is thought to be tied around the little finger. According to Chinese legend, the deity in charge of “the red thread” is believed to be Yuè Xià Lǎorén (月下老人), often abbreviated to Yuè Lǎo (月老), the old lunar matchmaker god, who is in charge of marriages. The two people connected by the red thread are destined lovers, regardless of place, time, or circumstances. This magical cord may stretch or tangle, but never break. This myth is similar to the Western concept of soulmate or a destined flame.

So, this red thread is now drawing this disparate group of artists from across the world, through different times in history together and who knows what will emerge from that incredible crucible. I can’t wait to reach Z, let the dust settle and see what emerges.

I apologize in advance that these are length posts. However, as you could imagine, mowing down such Everists into a few paragraphs would be a daunting task for experts, let alone a minnow like myself. However, sometimes it takes a minnow to to go where big fish fear to tread.

I hope you enjoy this emerging series.

Here are a couple of links which stood out to me on my travels:

Van Gogh’s Sunflower Series

Movie: Loving Vincent

Brainpickings: The Fluid Dynamics of Starry Night

The Unexpected Maths in Vincent Van Gogh’s Starry Night

Vincent Van Gogh Visits the Gallery | Vincent And The Doctor – YouTube

Dear Vincent – a novel by Mandy Hager (loved it!!)

I hope you learn as much as I am from this series and perhaps consider some of the artists, great and small, who have inspired you.

Best wishes,

Rowena

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

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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