Tag Archives: hydrocephalus

Crime in the Quiet Carriage.

Breathe! Keep breathing! Remain calm!

But I can’t. I’m wound up. Seriously agitated and my brain is rapidly heating up, about to reach boiling point. No amount of relaxation, mindfulness or psycho-babbling positive self-talk is working. A rapidly ticking bomb, I’m about to go off. No small explosion either. This is definitely way beyond a small or even a medium-sized bang and rapidly accelerating passed a big one too. We’re talking a nuclear explosion… right here right now at this very precise tick of the clock.

Stop talking! This is a quiet carriage!!!

Stop talking! This is a quiet carriage!!!

There must be worse crimes against humanity than talking in the quiet carriage but right now, nothing comes to mind.

Before you start thinking I’m the psychopath, just let me just tell you that I’m on my way down to Royal North Shore Hospital to have a long awaited MRI of my brain. My neurologist hasn’t ordered this test for fun or as some kind of high-tech photo shoot. No, you seriously don’t have an MRI of your brain for fun and there’s definitely not going to be any smiling for the camera either. As if being covered in a white sheet and shut inside a white plastic tunnel being bombarded with weird electronic noises isn’t bad enough, they’re jabbing me somewhere with a needle.

Having a brain MRI. Covered in a white, sheet you disappear inside a white tunnel. Get bombarded by all sorts of jalting, beeping electronic noises. jabbed and then you're free to go home...you hope!

Having a brain MRI. Covered in a white, sheet you disappear inside a white tunnel. Get bombarded by all sorts of jalting, beeping electronic noises. jabbed and then you’re free to go home…you hope!

They’ve jabbed me with THAT needle before. They jabbed me right in the head, injecting radioactive isotopes straight into my shunt. I tell you, I’m a veteran of jabs and I’ve survived brain surgery and chemo but that jab in the head has no equal. It involved absolute and utterly excruciating pain. I can assure you, there’s some now graduated medical student out there who still bears the scars of near crucifixion in their hands. I dug holes in his soft, polished flesh with my unkept but piercing fingernails.

So here I am getting on the train thinking about the pain, the possible outcomes and how I’m even going to make it to the hospital as I’ve spent the best part of the last month in bed and traveling for almost 2 hours is a huge undertaking in itself. I don’t know what’s going on with me. Either I’m dying, or I’ve finally succumbed to the dark side of the force. I addressed this in a previous post: https://beyondtheflow.wordpress.com/2014/10/27/terminal-cyberchondria-yes-please/

Maybe after this monster test is over, the sun will come out again and this will all seem like a distance dream. A black cloud mysteriously scudding across an azure sky which suddenly disappears like magic…a miracle! I’ll go back to my life of champagne and…My goodness! Who am I kidding? We all know real life is no commercial break!

Being such a long train trip, I’m expecting to makes serious inroads on Booker Prize Winner  Richard Flannegan’s Death of A River Guide. Given the intensity and chaos of the MRI plus trying to juggle the kids and all their activities, this train trip is bordering on a sacred journey. I so desperately need peace and quiet and a lot of thought went into choosing the right book for the trip as well. I’ve been flicking through a couple of books over the last couple of days trying to work out where to head next. I’ve read two other Richard Flannegan’s lately and decided he was a pretty safe bet and I was seriously looking forward to both losing and finding myself in a good book. A want which had transcended into something of a desperate need. A cry of the soul.

However, instead of finding myself inside the much anticipated and heavily sign posted quiet carriage, this place is  more like a crowded pub during Happy Hour or even a flipping circus with clowns…wild clowns. There is raucous chatter everywhere..even laughter. How dare they?!! Harlots!

Welcome to the Quiet Carriage!!

Welcome to the Quiet Carriage!!

Alright, so I exaggerate a little. While there was some loud chatter down the other end of the carriage, there was one particular loud mouthed foreignor talking four times as loud as your average Joe talking with his friends…a group of seniors in case you’re about to blame the insensitive youth of today. Unfortunately, I was sitting right behind them. I soon started thinking about asking them to be quiet and pointing out the quite carriage signs which were clearly signposted throughout the carriage. I also thought about talking to the guard.

However, a few of my friends have mentioned the maniacs in the quiet carriages. The so-called “Noise-Nazis” who have a nervous breakdown over the sound of even the slightest pinhead of a pin being dropped. I like to be classified as the “nice woman” and not one of THEM…even by these totally rude, self-centred strangers I’m never, ever going to see again. Instead of being the bad guy, I chose the stoic high road…to suffer in silence. Of course, I could’ve alerted the guard if I’d been more nimble on my feet. They have a special announcement recorded for the socially inept. It goes something along the lines of: “This is a quiet carriage…If you want to talk, move to another carriage.”

I did consider moving to another seat or even try the standard carriage but it was all too hard. There wasn’t another seat and I’m not that steady on my feet. I couldn’t risk trying to change carriages while the train was in motion, even with my walking stick in hand. So instead, I sat as still and as silent as a marble statue…fuming. Fuming some more. I could feel the flames burning in my head. Smoke bellowing out my ears. I was mad. Irate. Furious. This was pure, unadulterated train rage.

Grannies show an umbrella can also come in handy!

Grannies show an umbrella can also come in handy!

In retrospect, I should’ve just taken a leaf out of my grandmother’s book. She would have bopped the lot of them on the head with her walking stick and told them in no uncertain terms that they were in the quiet carriage. “Are you blind? Can’t you read the signs?!!” My grandmother was pretty handy with her stick. What’s more, if she’d bopped them, she would have gotten away it.  After all, she was just a sweet, little old lady. There would have been no court appearances and not even the shout of “guard”! They would have taken their punishment and zipped it. Shown a bit of respect.

Me, on the other hand? One strike of my walking stick and I knew I’d be dragged off the train by armed guards and loaded into a paddywagon bound for greener pastures.

However, in the end someone else stepped in and played bad cop. Yet, this lot of seniors proved themselves a real bunch of reprobates.  They might have zipped it for about 2 seconds, which for this lot even felt like a very pregnant pause, and then continued bellowing through their inbuilt megaphones. You wouldn’t believe it. One of their phones even started to ring and of course another loud voice starts booming throughout the entire carriage. It wasn’t just a case of hello and goodbye either…more of a conversation and as far as I was concerned, quite the life story.

As I said, I know there have been worse crimes against humanity than talking in the quiet carriage but at this point in time nothing came to mind.

After reading and re-reading the same line of my book a hundred times over, I gave up on my book and surrendered to the noise.

Finally, we all alighted at Hornsby Station.

However, as the saying goes, it could always be worse. Aside from country trains passing through, there are no quiet carriages on Sydney trains. You just had to put up and shut up and if you don’t have the luxury of a seat, you also enjoy the thrill of having your nose jammed in a stranger’s armpit as well.

Anyway, after changing trains at Hornsby, I’m now heading down the North Shore Line on my home turf.

By now, I think we’d already established that lady luck wasn’t on my side. Of course, I had timed my train trip to perfection. Yes, it was home time for the hundreds and thousands of noisy, smelly, sweaty school kids who all piled onto my train as it stop started down the line. By this stage, all hope of reading my book was gone. Instead, I became the observer. I must say teenagers intrigue me. Potentially much more fun than the seniors yapping on about their super on the last trip.

I occasionally used to catch trains like this when I was at school…an all girls school. I must have been a bit older than this crowd because we were always conscious of the boys on the train and this lot seemed rather oblivious or perhaps it’s just that they didn’t have Hugh Jackman on their train. We did.

There were no looks, glances or giggles. Each group was its own island surrounded by their own impenetrable shark-infested sea. Ironically, the groups were arranged boys, girls, boys, girls throughout the carriage in their different uniforms. It all looked very strange to me and I felt like I’d landed in some weird, foreign universe. Why weren’t these teenagers all talking with each other? Did all these same kids catch the same train every afternoon sitting in the same “reserved” seats never giving each other more than a sideways glance?

The only thing standing in between them all was different uniforms and yet aren’t we all one human race? You wouldn’t think so. That said, we all know men are from Mars and women are from Venus…even my 8 year old daughter. She and her friends have been “at war” with the boys at school a fair bit lately.

If I could’ve had my way, I would’ve introduced all these kids to each other and tried to build some common ground. Not to play cupid or to nurture teenage romance helping some self-conscious souls find true love, but rather to begin a diologue and cross a divide that starts with different uniforms and extends to gender, skin tone, class, disability and results in war.

If only the problems of the world could all be solved on a simple train ride to Sydney, the world would be a much better place!!

PS As soon as we arrived at the hospital, we heard the dreadful, tragic news that Australian cricketer Phillip Hughes had passed away after a bouncer hit him in the neck, stopping blood flow to his brain. Being a brain surgery survivor myself and being in this really intense state prior to my brain MRI, the news hit me seriously hard. Hughes and his family and friends were no longer strangers but part of our neuro community and I loved them all with my entire heart..especially Sean Abbott who just happened to bowl the devastating ball. I send you love from the  very bottom of my heart!!

Chemo Brain…the Likely Culprit.

I just wanted to update you quickly after my appointment with my neurologist yesterday. While it’s quite cathartic to write humorous posts to deal with difficult situations, I felt I needed to stop being the clown and remove the mask.

The jury is still out on what’s causing my memory problems. It’s looking like chemo brain is the most likely explanation for my memory troubles and my neurologist has recommended eating lots of green leafy veggies, a multi-vitamin high in vitamin B but I also need to have a brain MRI and a neuro-psych assessment.

In case you haven’t had a neuro-psych assessment, it’s where a psychologist asks you a whole heap of questions like: what’s the name of the Prime Minister, count backwards by 7 and what’s the day of the week. Fortunately, they don’t ask you where you left your car keys or what you did with that school note last week. That said, some times even the day of the week could be problematic. Unless you’re Einstein, I’d say most of us don’t like the idea of someone tinkering around inside our heads.

Even if there is a medical justification for my memory troubles, I still don’t want to get the questions wrong. I have my pride and can still hear the humiliation of an entire classroom of kids laughing in my face. Growing up doesn’t erase the horrors of being picked  on at school and most of us have copped it at one time or another.

While I’ve done these tests before and can recall at least some of the questions, I’m trying to stop myself from rehearsing the answers:100, 93, 86, 79…

As much as I don’t want to make a mistake, it would be an even bigger mistake to cover-up my weaknesses. I’d ultimately only be cheating myself.

Meanwhile, I’m taking comfort that my writing is still going well and that I’m playing my violin and these are both mentally, if not physically, complex tasks. There’s still some sort of activity going on upstairs.

By the way, the brain MRI will check for the deadly brain virus with the long name I mentioned in my last post. Apparently, it’s statistically very unlikely: about 1 in 50,000. However, these days stats don’t appease my concerns. The chances of having dermatomyositis were much less at 100,000 to 1 and I struck the jackpot there. Once you have one statistically rare disease, the odds mean nothing.

The neurologist has also ordered some additional blood tests.

Meanwhile, while I’m waiting to get these tests underway, I’m self-medicating. Once you’ve been through chemo, a few bits of chocolate are absolutely harmless.

To read my post about cyberchondria click here: https://beyondtheflow.wordpress.com/2014/10/27/terminal-cyberchondria-yes-please/

xx Rowena

Catching the Lift with Leunig

Sometimes I’m flapping my wings so much that I can’t even see what, or in this instance, who was standing right in front of me waiting to get into the very same lift. It was Michael Leunig…the cartoonist, poet, artistic visionary, philosopher, humourist. Of course, being my usually oblivious self, I had no idea. Fortunately, my friend tapped me on the shoulder and the next thing, I was boldly introducing myself and we shook hands. I actually shook hands with Leunig. Oh my goodness! I was never going to wash my hand again!!

Not only did I get the chance to shake Leunig’s hand, we talked. Even though I talk underwater, I somehow had to condense so much into just a sentence or two and managed to mumble something about him being a light bulb in the darkness when I had brain surgery. That was enough. After all, when you say you’ve survived brain surgery, people know that you’ve suffered. That you are a serious survivor and not some Mickey Mouse character who has simply stubbed their toe and had to write a tell-all book. I didn’t mention my subsequent battles with a very rare muscle wasting auto-immune with the unpronounceable very long name, dermatomyositis, or how that disease had spread to my lungs and I’d had chemo for Christmas. This collection of vicious diseases was too much to explain to anyone in a lift, even Leunig but I was using my walking stick and its presence alone spoke volumes.

I’m not sure how well Leunig is known overseas but in Australia, he has officially been cited as one of our greatest living treasures. Leunig is a man with such vision, that he can see through all those camouflaging layers we’ve so carefully wrapped round and round our fragile souls and he can put his finger on our broken hearts and heal the hurt…or at least offer a good dose of empathy and compassion.

In the introduction to The Prayer Tree, a gorgeously inspiring little book which is the perfect gift for anyone going through a hard time, Leunig writes:

It is difficult to accept that life is difficult; that love is not easy and that doubt and struggle, suffering and failure, are inevitable for each and every one of us.

We seek life’s ease. We yearn for joy and release, for flowers and the sun. And although we may find these in abundance we also find ourselves lying awake at night possessed by the terrible fear that life is impossible….

It is difficult indeed to accept that this darkness belongs naturally and importantly to our human condition and that we must live with it and bear it. It seems so unbearable.[1]

Leunig is absolutely superlatively amazing and yet, Leunig the man…the man you meet in person …is humble, seemingly ordinary and easily blends into the crowd. He is neither tall nor short with curlyish light grey hair and when he speaks, he is very natural and very down to earth. There are none of the airs and graces mere mortals expect of greatness or from the pseudo artiste! This is why we love Leunig. He is real…so very, very real and authentic. It is this authenticity which really stands out in what can be a very superficial world. As does his kindness and compassion.

Sydney Writers' Festival

Sydney Writers’ Festival 2013

Despite my many years of attending the Sydney Writers’ Festival, I have never been to a session with Leunig before and only recently I’d became aware of that gap, which was so much more than a missing notch on the bedpost. I really felt I could learn a lot not just about creativity, writing, art but also about life and being spiritual from Leunig. After all, aren’t so many of us desperately seeking that inner transformation and some way of overcoming our struggles and learning how to glow in the dark? This has been my journey…to suffer yet find happiness. Go through periods of light and dark and as a writer to share these experiences with others and help us all feel a little less alone. I want people to know that they can also live with shadows and still know happiness, joy…life!

At the end of the session, there was question time. They are pretty strict with this question time. It’s not the sort of place you can stick your hand up and tell your entire life story or even more pertinently ask Leunig about the colour his underpants. Definitely not! You need to sound smart and your questions also need to be succinct, to the point and as carefully crafted as that elusive first novel. There is even an official “keeper of the mike”, so you almost need to have the full dress rehearsal before you even stick up your hand.

Despite these very intimidating surrounds, I always ask questions at the SWF because I figure this is my only chance to plumb the depths of some incredibly successful writers and somehow perhaps actually launch my own small boat into that enormous sea. Last year, I was very proud of myself when I actually dragged my shaking self up to the mike to ask Hollywood actor and now writer Molly Ringwald of Breakfast Club fame a question in the equally intimidating Sydney Town Hall with its ginormous pipe organ towering overhead just to intimidate me even further. Yet, this was the chance of a life time for this little pipsqueak of an unpublished Australian writer to actually speak to Hollywood super-stardom and I couldn’t wimp out. I did it.

So there I was a year later in the middle of yet another potentially intimidating and erudite crowd along with the gate keeper of the mike, and I stuck up my hand. Not to stick to the rules and actually ask a question. Not to tell my life story either but I wanted to thank Leunig for being there for all of us who have been lost in the dark and Leunig has been that light. While the theatre erupted in applause, this was a little controversial and involved bending the rules. I can’t remember what I said but the words just came out. I was amazed at my own eloquence as I can stammer and stumble over basic sentences even at home, but I have a funny feeling that these words didn’t come from me but were something of a wind or spirit simply passing through. I was just the messenger.

Thanks to meeting up with Leunig in the lift prior to the session, I had arranged to meet his publicist afterwards so I didn’t have to queue up during the book signing. However, we somehow managed to arrive before the hoards and there was this ever so small gap while they were getting set up… you could say a very pregnant pause. While he was signing my books, Leunig and I exchanged a few words and a glance. I felt such warmth and compassion in his eyes. I knew that he knew. He knew all those thoughts and feelings of light and dark that even I with all my great love of words, can not truly express. Leunig and I had made a connection, which for me was an incredibly deep and penetrating connection…two fellow soul travellers. I immediately felt so much less alone.

You can’t encounter Leunig in any medium and not emerge a changed person. It is an old cliché about the butterfly emerging from its chrysalis but it is oh so true! Our modern world can be so fragmented and isolating and then there are horrific experiences which also isolate us, even from those we love and love us. That is possibly the greatest problem…those toxic private tears which drip one by one down the back of our throats and into our hearts because for whatever reason, we just can’t get them out. Sadness and an acute awareness of our own failings are not easy feelings to share and most of us can’t just go and paint these feelings on a t-shirt and show the world or even our nearest and dearest. Leunig does. He knows our humble feet of clay and is more than willing to walk with us through the abyss. He might draw us a nice little window to look outside into the sunshine or add a light. He might even lead us outside into the sun to walk with his duck through the flowers because he wants us to know that just as life isn’t all light, it isn’t all darkness either. That we can more than survive our hurdles. Indeed, we can thrive. Yet, if we’re still not thriving, that’s okay too. He seems to have a real understanding of that little person who never, ever makes it.

To experience more of Leunig, you can read his bio and check out some of his works on his web site at www.leunig.com.au

I’m sure you will more than understand why his works mean so much to me!

Love & blessings,

Rowena

[1] Michael Leunig: The Prayer Tree, Harper Collins, 1990 no page numbers.