Tag Archives: hydrocephalus

Our Spiritual Journey…

It’s not very often that I even touch on the spiritual side of my life…my beliefs, my faith or Christian community. That’s not because they aren’t an important. Rather, it’s just that I often see too many shades of grey, and wrestle with so many aspects of my own faith, that  it’s not easy to package it up and present it to anyone else in a vaguely coherent state.

I guess that’s what happens when you’re “beyond the flow”. You’re not usually the sort of person who walks into a place and immediately feels comfortable in that empty seat. Indeed, you bring your own. Ask questions. Wriggle. Don’t quite feel comfortable and look around at all the people who belong and ask: “What about me? Where’s my place? Will I ever belong?”

Above: Barney’s back in my day before it was destroyed by fire and rebuilt. Although I really struggled within myself while I was there, I was very happy there too if that makes sense. Found my place for awhile.

When I was in my twenties, I moved from the small Lutheran Church where I’d grown up and didn’t have many people my own age, and started going to St Barnabas Broadway. “Barney’s” was the Anglican Church aligned with Sydney University, where I’d literally swung from the chandeliers as an undergraduate, loving and being fully immersed in virtually all aspects of campus life. Barney’s was jam-packed with hundreds of young people, and I thought I’d hit the jackpot. That was until I struggled to run into the same people week after week and missed the intimacy of my home Church. Yet, I persevered and went to home groups and formed a really tight group of friends who were also mostly on the fringe of things to some extent. For example, the women among us weren’t real good at wearing floral dresses, which were a kind of uniform at the time. Over time, we came to see ourselves as the “black sheep”.   Indeed, a friend of mine and I wrote this incredibly sad, cynical story of sheep drowning in their own tears abandoned by the shepherd. This wasn’t so much a comment on Barney’s, but more a sense of the individual getting lost and overlooked. Of course, that’s nothing new, but when you feel yourself drowning in sorrow, it can feel like you’re the only one who has ever been there. However, with the exception of mental illness, it is often something everyone experiences from time to time. Moreover, your teens and twenties can be particularly turbulent as you try to launch yourself out into the so-called real world and search for love. It is difficult for most people to respond to drowning souls. However, if you know anything about life saving, you’ll know that you’re not meant to drown yourself saving someone else. Rather, they recommend using props like a broom, which enable you to save a life and not go down in the process.

Anyway, as it turned out, my sense of drowning in my own tears, wasn’t far off the mark. While I was turning to spiritual and psychological sources of help, I was actually battling the effects of undiagnosed hydrocephalus (or fluid on the brain) where the cerebral spinal fluid (CFS) was building up inside my head and squashing my brain. I didn’t have trouble with headaches, but I was clumsy right through high school  and with the pressure on my frontal lobe, wasn’t just extroverted. Stress was also quite disabling. After all, my brain was already under the pump.

When I was 25, I moved to Western Australia thinking a more relaxed lifestyle would be better. However, I was diagnosed with the hydrocephalus a few months later when I couldn’t touch my nose in a basic medical check up. Six months later, after a serious and sharp decline, I had brain surgery in 1996 where they inserted a VP Shunt from my brain under the skin through to my peritoneum. I moved back to Sydney to recover. The shunt blocked and it was decided I had to stay put and I moved back home with mum and Dad and did six months rehab to get back on my feet. I was off work for six-twelve months and went from being a Marketing Manager in a serious relationship to moving back in with my parents with my life squeezed into my bedroom cupboards. While I was grateful for their support, becoming a dependent child again was devastating. It wasn’t part of my plan, ambition and contradicted every little aspect of how I saw myself as a intelligent,  independent career woman.

Then, the shunt blocked, and my bad luck appeared terminal. Not in a life and death sense, but in terms of my morale. I remember talking to a friend and thinking I’d never get married and have kids. That I “couldn’t even take care of a goldfish”. These were gruelingly difficult days, extending into months which kept crawling along. 

Clearly, I’ve come a long way sense then. I met my husband Geoff on NYE 1998, while I was still in the recovery phase from that surgery. He took me on when I was still pretty much a rough diamond, and loved me regardless. Was part of the ongoing journey which saw me continue to recover and extend myself even to the present day. Thanks to what we are still finding out about neuroplasticity, I started rising back up and getting back into the land of living, even if I wasn’t quite back in the fast lane.

Anyway, I’ve taken you on a massive detour from where I intended to take you today.

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Praying for our son after the baptism.

The reason I’m touching on the spiritual, is that our fifteen year old son, who is known as on Beyond the Flow as the inimitable “Mister”, got baptised yesterday. When I asked him why he got baptised yesterday, he told me today that the baptisms were on so he might as well do it. However, his face told a different story yesterday when he was bursting with excitement, glowing and clearly being touched and immersed not only in the water, but also in the Holy Spirit and God’s love. Please don’t ask me for an explanation. This was clearly supernatural. I live with this character and experience the ups and downs, highs and lows and the clean versus messy bedroom. I know he’s not a saint, and yet he is. Somehow, so am I. Yet, I feel incredibly ordinary even if I’m no longer that lost, black sheep drowning in my own tears.

I am incredibly proud of our son for choosing to get baptised now. He turned 15 on Friday, and clearly this is an age group renowned for making other choices. Fantastic!

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Our family after the baptism

The other thing I was really stoked about, was that despite the last minute notice, we had a good contingent of family there. That even included Geoff’s sister and her boyfriend from Queensland, who just happened to be down. It was actually a very rare situation where Geoff’s family outnumbered my side. With my Dad being one of seven, that doesn’t happen often. Mister also had a few of his friends along and our Church (Hope Unlimited Church) also has a strong youth group and they were there literally cheering him along. Indeed, four of the youth were baptised yesterday.

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Lastly, although it spent the service out in the car, the family Bible made it inside afterwards and I managed to share it with a few people. It was published in 1872/74 in Philadelphia and originally belonged to my grandfather’s grandfather, Heinrich August Haebich who was a blacksmith in Hahndorf, South Australia. His wife’s family included the Hartmann’s and Paech’s who were among the first German immigrants to come to South Australia. They migrated to under Pastor Kavel, because they didn’t believe in changes to the liturgy back home.  On one hand, you could say they were very devout and fought to defend their faith (which for Pastor Kavel included going to prison at the time). On the other hand, you could describe them as stubborn and resistant to change.

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My grandfather photographed at his retirement service.

My grandfather became a Lutheran Pastor. A shepherd in the very meaning of the word, he told stories of driving out through the mud to reach families and connect them with Church and salvation. He and my grandmother worked tirelessly in a ministry capacity, but also as what we’d today would view as social work. While serving in Wollongong in the 1950s, their congregation was mostly made up of European migrants known as “New Australians” who were struggling to adjust to a new country, language and culture and deal with having to start over again with perhaps little more than the shirt on your back. These legendary heroics of migrant Australia, didn’t come without a cost. My grandparents and their kids, lived in a tiny matchbox-sized manse next to the Church where their door was always open and they gave more than really was a good idea. My grandfather would marry a couple. My grandmother would be the bridesmaid and my mother or aunt would play the organ. At the larger weddings, the family would have to leave before the dancing could start. These were interesting time, so different to how I have grown up.

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The Walker Family after their release from the Japanese. 

This is just my Christian and spiritual legacy to our son. Meanwhile, Geoff grew up in a Seventh Day Adventist Family in Scottsdale, Tasmania. In his twenties, he moved to Sydney where the home group he attended broke away, becoming Dayspring Church. Going back in time, his family included a Methodist lay preacher and another branch of his family, the Walkers and Brookers were active in the early days of the Salvation Army. Indeed, his grandfather Herbert William Brooker played the cornet in the band which we’ve inherited. Actually, I just found out last night that Herbert William’s cousin, George Walker, was a Lieut.-Colonel in the Salvation Army and was interred by the Japanese during WWII while serving as a missionary in China.  Geoff’s Great Great Grandfather, Robert Sleightholm,  actually built much of the historic Church of the Good Shepherd at Hadspen in Tasmania. I know that’s different to pastoring a Church, but he was still a Church builder. Incidentally, that’s far better than being a Church seller and wrecker. The Anglican Church has put  the Good Shepherd up for sale. Read here. What did I say about the shepherds and the sheep?

While we are very proud of our strong Christian heritage, that is not to discourage people my kids refer to as first generation Christians. While it can be quite encouraging to come from a Christian family and there can be that internal cohesion, it can also be quite different if your Christian walk goes off on a tangent to your family. Christian communities have seemingly become more tolerant in recent years, there are tensions between different expressions and interpretations of faith. This legacy might not always leave you with a blank slate or room for your own faith to grow unimpeded and without perhaps being pruned too harshly. So, whatever your family situation might be, that’s okay. We are all God’s children and valued members of God’s family. Jesus loves us.

Funny I should write all of this, because I usually don’t speak up and it’s been really hard for me to feel an ongoing sense of belonging and commitment to Church. As you’re probably aware since my battle with the hydrocephalus, I was dealt another whammy when I became progressively immobile following the birth of our second child, Miss, and was diagnosed 18 months later with dermatomyositis. For awhile there, I felt like God didn’t love me any more and had channelled his wrath my direction and was zapping me with thunderbolts. I was really angry, hurt and just bereft that I had a second very rare, unpronouncible disease and I hadn’t even turned 40. Of course, I was mad. Mad with God. Mad with life, but mostly petrified of dying and leaving my then three and 18 month old children without their mum, especially when they were too young to even remember their mother or what it was like to have a mum.

My ongoing struggles with chronic health and disability also made it difficult to get to Church regularly and build those ongoing, continuing relationships where I could be a part of things. Me being me, I was also radically overthinking everything. Plus, I was fighting to stay alive, particularly after the dermatomyositis started causing fibrosis in my lungs. I developed bronchitis, pneumonia. I really should wear a mask out in public during fly season, but I am who I am and that isn’t me. I want to be with people, not behind a wall of any sort.

So, life is complicated and as frustrating and exhausting as it might be, I have to keep rising back to the surface and being not only part of community, but being something of a shepherd and caring for the flock from my seat somewhere out the back and not quite out the front. That’s my place. Meantime, Geoff can be found either up the front playing base, setting up and packing up chairs often with our son in tow. Our daughter went to her first meeting of Church dancers last week. That’s quite development compared to when my Mum was growing up.

Well, although this is the extended version of the baptism, it really is very much a fleeting overview of our spiritual journey and we’d love to hear from you. Moreover, if you have written any posts along these lines, please include links in the comments below. I’d love to read them.

Love & God Bless,

Rowena

Lt-Col George Walker Dies

Lieut.-Colonel ‘George Walker, commander of the Newcastle Division of the Salvation Army, died in Newcastle last night at the age of 61. Lieut.-Colonel Walker became an officer in the Salvation Army’s Burwood Corps 37 years ago, and then joined the China and India mission service. During the Second World War he was interned by the Japanese, and is remembered by many prisoners as welfare officer in a number of internment camps around Peking. After the war, he served as a travelling evangelist in New South Wales and Queensland, before taking up his Newcastle post a year ago. Newcastle Sun (NSW : 1918 – 1954), Wednesday 16 April 1952, page 3

 

 

 

 

 

 

 

Our Visit to Charlie & the Chocolate Factory… the Musical.

On Tuesday, my daughter and I ventured into Sydney with a group from her dance school to see Charlie and the Chocolate Factory…the Musical. Being a Roald Dahl tragic and chocolate lover, this musical was a must see.

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My daughter with her dance teacher, Miss Karina Russell, at stage door after the performance.

However this production had an added attraction. Miss Karina Russell, our dance teacher, was playing Veruca Salt. That’s right. She was playing that awful rich brat of rich brats who I remember so clearly demanding: “I want an Oompah Loompah and I want it NOW!!” However, that’s not all. We’d already seen her costume when the cast performed at Carols in the Domain and she’s wearing  what looks like a double-yoker of a tutu, a double-decker tiara, a faux mink jacket and pointe shoes and she actually manages to get some ballet in before she meets her demise. She looks amazing. Indeed, all the costumes were fantastic. However, that’s all I’m going to say about the show other than, you should try and see it.

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Does doing adult dance classes make me the ultimate dance Mum? After years of driving my daughter to classes and concerts, I suddenly wanted to get out of the chair and have a go myself and I loved it. Found them so invigorating and creatively it blew me away.

However, if we go back to the title, you’ll see that this post addresses our visit to the musical, and it is in no way intended to be a review of the show. Rather, this is more of a review of how yours truly can complicate matters and achieve the extraordinary without even leaving her seat. It also looks at my personal connection with Roald Dahl. I know that might sound a bit full of myself and you’re probably wondering what this mad Australian woman has in common with Roald Dahl the literary genius. “Tell ‘er she’s dreaming!” Well, I’ll get to that.

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Inside the theatre.

If you know anything about me at all, you’ll know that when my daughter and I went to see Charlie & the Chocolate Factory- the Musical, that it had to be out of the ordinary. That since we don’t do anything via the road well-travelled, that we’d wind up on our own trajectory.

Firstly, as I explained, OUR dance teacher, Miss Karina Russell, is playing Veruca Salt. Yes, that’s correct. Your eyes aren’t playing tricks on you. She is OUR dance teacher. I know that probably sounds preposterous… Rowena learning dance when I have a debilitating cocktail of significant disabilities/chronic illnesses (hydrocephalus, dermatomyositis and Institital Lung Disease). However, somehow I found a pathway through and around all of that to take adult dance classes at the same studio as my daughter, Dancin Mates, here on the NSW Central Coast. I did some sessions of lyrical and contemporary dance with Miss Karina a few years ago. Moreover, in addition to the steps, she took us on a journey through how contemporary and lyrical dance rose out of the relative straight-jacket of classical ballet and introduced me to a range of choreographers and their philosophies. Naturally, this was of particular interest to me as a writer, and I’d go home and Google them all. Of course, Miss Karina asked me if I watched them dance. Of course not. I was interested in the words.

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Stage Door

Secondly, while we were sitting in our seats waiting for the curtain to rise, we had a drama of our own.  While it’s our role as audience to sit in our seats while the performance is on stage, yours truly took off her glasses for a group photo, and put them on the floor under her seat. Of course, you know what happens next, don’t you?!! They disappeared. In a truly farcical “only you, Rowena” way, my glasses vanished. So, I start blindly groping under my seat probing through the dark like my fingers have eyes. Yet, on the first couple of sweeps, nothing. My daughter is sitting next to me, she gets recruited and switches on the torch on her phone. Tips out all our merchandise and starts going through our backpack (which was packed with the kitchen sink) searching for them. Nothing. Although I lose my glasses almost every morning under my bed and always find them, I’m now starting to panic. Really panic. Here we are on our musical theatre experience of a lifetime, and I’m not going to see anything at all. CATASTROPHE!! Of course, I didn’t want to alert the rest of our group. I didn’t want to be the problem child, especially when I was one of the parents. However, just as mysteriously as my glasses vanished, they returned. They must’ve gone off in the Tardis and returned.

Anyway, as I said, our experience of Charlie & the Chocolate Factory…the Musical was unique and treading down roads few have trod.

This takes me onto Roald Dahl and my incredibly personal connection to the man. While we know his books, Roald Dahl himself is an enigma of his own making. Indeed, when it comes to getting to know Roald Dahl, he’s quite the slippery fish.

I first started researching Roald Dahl a few years ago, when I included him in my blogging series: Letters to Dead Poets Letter to Roald Dahl. What particularly attracted me to Roald Dahl the man was our shared experience of going through a major neurological event and how that impacts on just about every part of your being.

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Roald Dahl with his plane.

You see, during WWII, Roald Dahl was a pilot in the Air Force and he fractured his skull when his plane crashed and experienced personality changes as a result. Indeed, it was after this accident that Roald Dahl started writing and left behind his job working as an engineer for Shell. His biographer, Donald Sturrock, wrote:

“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 behavioural 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.1.”

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Roald Dahl with wife actress Patricia Neal

However, that was not the end of Roald Dahl’s involvement with the neuro ward. 5th December, 1960 Roald Dahl’s son Theo was out walking with his nanny when a taxi veered into his pram and he was thrown into the air and landed head first onto the pavement fracturing his skull. Moreover, Theo also developed hydrocephalus or fluid on the brain and was given emergency brain surgery where they inserted a shunt. However, shunts were particularly unreliable back then and were notorious for getting blocked. This required a surgical fix, and there were serious concerns about how these surguries would affect Theo’s cognitive development. I remember how my Dad rallied when my shunt blocked, and how Dads can be a mighty force fighting to save their child no matter how old they are. So, I wasn’t surprised that Roald Dahl decided to take matters into his own hands. Dahl recruited the guy who made the hydraulic petrol pumps for his model planes and Theo’s paediatirican and togehter they developed a new shunt which saved thousands of lives, before it was superceded.

Then, as if the Dahl family hadn’t already seen enough of the neurology ward, in February 1965 his wife Patricia Neal suffered a severe stroke after an aneurism burst while she was pregnant with their fourth child, Sophie. She spent three weeks in a coma and then Roald Dahl devised a grueling rehabilitation program, which saw her return to the screen.  However, that is a story in itself.

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Who would’ve thought that a secret harbour was inside my head?(Hydrocephalus)

As you may be aware, I was born with hydrocephalus after Mum had a very difficult birth (not unsurprisingly I was facing the wrong way something which hasn’t changed unfortunately). However, for some reason it lay dormant like a volcano until my mid-twenties, when for some strange reason whatever had been compensating for the presence of this harbour in my head stopped and within about a six to twelve month period it blew its stack. Indeed, just about the only symptoms I had growing up was being a bit clumsy, rather extroverted and impulsive and having difficulty finding a hat which fit. It was only when I was 26 and a sense of vertigo I’d had after a bad flu didn’t clear up that I went back to the family GP who’d been treating me since I was 12, and the long and short of that, was that I was diagnosed with Dandy Walker Syndrome, a variation of hydrocephalus. After a grueling six months where I rapidly went down hill, I had brain surgery in July 1997, where they inserted a shunt. I was off to rehab for 6 months as an outpatient and left wondering if I would ever reclaim my life. The impact of all of this was like being struck by a bomb only I could never see or confront my enemy and it took a few years to feel vaguely myself again.

So, rewinding back to 1997 in Perth’s Mount Hospital, you have a young Australian woman who experienced a reversal of Roald Dahl’s big bang. Instead of having all my neurons suddenly switched up at once, mine were all switched down just as suddenly, when the shunt was put in. I very distinctly remember waking up from surgery and feeling like someone had turned down the lights. Not in terms of what I could see or hear, but I guess something along the lines of how I processed everything. I felt very, very quiet. This wasn’t, I believe, something which was apparent to those around me and I am still to this day, an extrovert and I’m sure countless people are still trying to tone me down. This was all about how I felt inside myself. Naturally, when I read about Roald Dahl’s experience, I understood what he went through immediately. Wished I could talk with him about it.

There is so much more which could be said about how personal tragedy shaped Roald Dahl’s writing. However, that will be another post. However, I hope this might encourage people who have experienced an adverse neurological event, that there is hope. That the light can switch back on. Never give up. You might even become a best-selling author, especially if you actually get your book finished!

Best wishes,

Rowena

Here’s a link to my Letter to Roald Dahl from my Letters to Dead Poets series: Roald Dahl: Letters to Dead Poets

And Roald Dahl’s Fictional Reply

Sources

Roald Dahl: The Plane Crash Which Gave Birth to A Writer

Donald Sturrock, Storyteller: The Life of Roald Dahl.

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Heading Home. This is outside Sydney’s historic Central Railway.

A Journey Without Steps…Friday Fictioneers.

All this motivational quackery was rubbish. My journey of a thousand miles was never going to begin with this step, and it wasn’t going to head straight up a flight of stairs either. Surely, there was a lift? Yet, I couldn’t bring myself to ask. Twenty-five years young with the rusty joints of an eighty year old, I was done explaining. I’d shut shop. It was much easier to stay home. Yet, that wasn’t a luxury I could afford. Lingering between the lines of disability and wellness, I had to work. If only I had the wings to soar….

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For those of you who’ve known me for awhile, I live with some chronic health and disability issues. When I was 25, I was diagnosed with hydrocephalus and had brain surgery to insert a shunt. My road to recovery felt like it was straight up the side of Everest without any safety equipment or assistance whatsoever, even though I was not alone. I really had comprehensive and loving support from my family friends and particularly my OT at Mt Wilga, who really helped me get through this incredibly hellish experience. Yet, I was the only one who could walk in my shoes. I was the only one who truly knew what it was like to put one foot after the other. I still had a job when I was going through that and yet my return to work date kept getting put back and their were complications. The valve of the shunt malfunctioned and I needed further surgery, which I really didn’t expect to survive. By this stage, returning to work seemed hopeless. My relationship had all but ended and it was a bloody hard slog. Yet, through all of that I always saw myself as a career woman. Work was very important to me. I ended up getting a part-time job and then landed what seemed to be my dream job in an advertising agency but the hours were very long and it was very stressful and one night I collapsed at Central Station from sheer exhaustion. I had to slow things down. Find a new path. One that wasn’t quite so steep and allowed me to heal. This was a huge life lesson for me and I clearly remember being told that I was a “human being and not a human doing”. I have a lot of adjustment to do and that is ongoing.

I would like to take this opportunity to raise awareness of the kinds of barriers people face when it comes to returning to work or finding a job when they have a disability, health issue or are just battling with life. How can we make their path a little bit easier? How can we reduce the load? What are we doing as a community to make their battle worse? Indeed, the finger of blame falls too quickly on the survivor instead of a helping hand.

Lecture over.

This has been another contribution to Friday Fictioneers hosted by Rochelle Wishoff-Fields. PHOTO PROMPT © Jilly Funell

Best wishes,

Rowena

 

The Journey Home…A Personal Quest.

“Every day is a journey, and the journey itself is home.”

– Matsuo Basho

For those of you who have been following my blog for awhile, you’ve probably sensed that I’ve been grappling with something. Something like a whole lot of random puzzle pieces, and wondering why they won’t all fit together. Arranging and rearranging them and then darting down another wombat tunnel (these are rather long and extensive by the way) searching for another missing piece, hoping that this time, I’ll finally be able to see the entire picture. Or, at the very least, have all four corners and the edge pieces in place.

Fueling this quest has been a sense that something isn’t quite right, which might’ve been blown off as anxiety or misplaced perfectionism if the story had been a little different.

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The Good Little Girl.

Of course, the general recommendation was “to go with the flow”. The only trouble being, that I was beyond the flow. Moreover, nobody ever presented me with a map or gave me any directions whatsoever to try to find the flow, let alone a lift. Indeed, since whenever, I’ve never gone with the flow or even known what it was.  Hence, why I’ve called my blog “Beyond the Flow”.

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Here I am in Year 6 aged 12. The Serious Student.

Lately, this sense of not going with the flow re-positioned itself, and I felt more like I was living in between the lines where I perhaps don’t belong to either group but see something in between that other people miss. This perspective is also rather interesting when you look at it from a visual perspective, as you’re inhabiting that white space between two sentences. Not that I can actually read either sentence, as I’m up too close. It’s all a blur. I’m just there. Indeed, I could well be fast asleep, and quite at peace in what actually seems an uncomfortable, or even isolating position.

Rowena Dressing up

I used to love dressing up and performing. My brother and I put on little shows at home.

By the way, I didn’t say that I was alone. I’m not. Indeed, I’m actually starting to wonder just how many of us hover in between worlds not really knowing where we belong and yearning to find our home. Or, perhaps we/they have reached a point of acceptance, or even giving up, and have pitched a tent where they are and set up camp.

For many of us, there’s a complicating factor which heightens this sense of living in between the lines. Of not going with the flow. Even, grappling to know who we are within our own skin, before we can even attempt to work out how we can find our place in the outside world.

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The Irrepressible University Student. You can see I’ve jumped right out of my box by now.

Personally, my struggle to know and understand myself raised up into something of a tsunami wave, after I was diagnosed with hydrocephalus or fluid on the brain when I was 26. Apparently, it had been there since birth, but randomly became symptomatic in my mid-20s. Suddenly, thanks to my diagnosis, I had an explanation for being quirky, uncoordinated, and not fitting in. Better still, I had a cure. A magic fix. I had brain surgery and was given a shunt, which not only reduced the pressure in my brain and improved my coordination, it also felt for a time like the lights had gone out. Indeed, I started to believe that the theatrical, extroverted independent woman I had always been, was largely the fabrication of this disease. That all this pressure in my head, had made me disinhibited. That at least some percentage of who I thought was me, was in actual fact the disease stepping into my shoes and even inside my very skin and taking over.

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Performing My Poetry in Paris in 1992.

This, of course, left the door open for way too many questions, and they not only moved in, but also made themselves at home.

Indeed, it left many doors and pathways open as I grappled to find some rock solid sense of myself. That core at the very centre of my being. The bit that is left, when you remove and take off all the layers and external forces and just is.

“To know yourself as the Being underneath the thinker, the stillness underneath the mental noise, the love and joy underneath the pain, is freedom, salvation, enlightenment.”

Eckhart Tolle

Much of this exploration has either been unconscious, or going on in the background while I’m getting on with the realities of life. If you’ve lived with this , you’ll know what I mean when I say the front screen is running but there’s another screen running behind closed doors, behind the curtain, or even somewhere at the back of your eyeballs (the eyes being the window of your soul). I never intended to live and operate like this, and I must admit it’s been very frustrating. I’ve really struggled to know quite who I am, and then to confound it further, I developed a debilitating auto-immune disease, which side-swiped me like a massive monster truck. Of course, it didn’t stop to see if I’m okay, or to even help me get my bearings. It just kept going.

“Knowing yourself is the beginning of all wisdom.”

Aristotle

Anyway, as I said, I’ve been niggling with this in the background and moving very much by feel. I feel comfortable, belong and really thrive in some settings, but in others, I shrivel up and am almost screaming in my skin to escape. I feel awful. There doesn’t need to be an explanation. Indeed, there often isn’t one.

Performance Queanbeyan 1886

 

I am coming to wonder whether it’s been this struggle within myself, which has taken me so deeply inside my family history. Indeed, now that I’ve found the missing piece of the puzzle, it feels like this is what I’ve been searching for my entire life. It wasn’t a coincidence that I wanted to swing from the chandelier. Or, that I wanted the be an actress right through high school (in addition to being a journalist). There was this pull from somewhere deep within my DNA, which didn’t connect with Mum and Dad or anybody in the near vicinity. However, deep within the lines of historic newspaper text, there it was. My grandmother’s grandmother performed in an amateur Minstrel Show in Queanbeyan, near Canberra. While it wasn’t New York, the programme was printed in the newspaper, and she wasn’t only the pianist. She was also acting. Indeed, Lizzie Johnston was playing Louisa in a romantic farce: The Rival Lovers. Finally, I had permission and acknowledgement of who I’ve always been. A constant beyond the ups and downs of life and collisions with life-threatening illnesses. An extrovert who doesn’t need a stage to perform, and can even perform in words upon the page, just like my kids sing and dance across the stage. Indeed, I don’t need a drink to perform a on stage either. Rather, I need someone to tie me to my seat in the audience.

Of course, that is not to say we’re pre-determined by our genes. However, personally I found it very encouraging that someone else in my family has been down this road, and I’m not crazy. That it wasn’t the result of too much pressure on the brain. It’s simply me. Moreover, there are quite a few performers on both sides of my extended family tree.

Aunty Rose & Kookaburra.JPG

My Great Great Aunt, Rose Bruhn, owned an elite hair and beauty salon in Brisbane but could also make kookaburras laugh on command, had a budgie who recited reams of Shakespeare. She appeared with them at charity fundraisers where she also performed poetry and she played the violin.

Two roads diverged in a wood, and I—

I took the one less traveled by,

And that has made all the difference.

– Robert Frost.

Rowena Lizottes

The humble violinist. I was actually a rank beginner when this photo was taken, but I have an in-built sense of theatre.

However, I’m not sure that this discovery is going to change a hell of a lot. These days, I’m pretty content with what I’ll call “my lot”. I’ve been doing some performances on my violin, which isn’t quite the same as jumping out of a cake or swinging from a chandelier, but I now understand a little better why I wanted to perform, and wasn’t content to only play alone at home.

While this journey is incredibly personal, and having problems with your brain isn’t something to brag about, it was a story that needed to be shared. While it’s been a catharsis for myself, I wanted to reach out to people grappling with similar issues, and hold your hand. We are not alone.

The Missing Piece

Lastly, I wanted to share an animation of a favourite book of mine by Shel Silverstein: The Missing Piece . It might be simple, but it’s very profound.

If this post connects with you in any way, I would love to hear from you via the comments.

Best wishes,

Rowena

A Legend in My Own Hair Follicles.

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

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

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

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

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

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

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

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

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

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

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

Best wishes,

Rowena

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. She’ll be accompanied by Dolly Parton’s 9 to 5

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