Tag Archives: Christian

Remnants of the Greta Migrant Camp, Australia – Thursday Doors

It’s been awhile since I made an actual contribution to Thursday Doors. That’s not because I haven’t continued opening and closing doors, not to mention leaving the odd door open. Indeed, I’ve even been photographing doors. Of course, I’ve been photographing doors, because once you start, you never really give up. You’re either a door person, or you’re not! Yet, at the same time, I also go through different seasons, and as we all know, nothing’s been the same since covid hit the scene.

The doors to nowhere. We’re thinking the theatre used to have a balcony.

Well, this week’s door isn’t particularly fancy. However, it fronts a courageous tale of war-torn survivors, displaced refugees from war-torn Europe who found themselves residing at the Greta Migrant Camp 40 kms North-West of Newcastle. Initially from Estonia, Latvia/ Poland, the Ukraine, Czechoslovakia, Yugoslavia, Lithuania and Russia, they were to be followed by Italians, Greeks and Hungarians. Experiencing enormous cultural shock, these “New Australians” described the camp as “a wilderness;” “a place like hell” and “the end of the world.” However, out of this “Babel” and multi-cultural crucible, a culturally rich, dynamic community evolved, and dispersed.

Not the original door to the former theatre, but it does the job.

The door itself was part of the original theatre from the Greta Migrant Camp, which along with some of the Nissan huts from the original camp, were relocated to YWAM’s Camp Tahlee where my kids attended a Church youth camp on Monday and Tuesday this week. I like the idea of this building being moved and repurposed, not for greatness and glory, but in this case it’s being used to share the Gospel and care for young people, and there’s a lot to be said for that. And so, these doors tell an incredible story of the survival not only of the people who came and went through these theatre doors, but also of the building itself. That has to count as a win-win.

Lock on a shed door.

Our daughter wasn’t quite ready to be picked up when we arrived, and so we walked around a bit and me being me had to check the place out through the lens. As has been pretty typical lately, it was overcast and not the greatest weather for photography.

However, you can get a sense of the place, and it really seems very relaxing. Not that it was so relaxing for the youth. A lot of pranking went on, and I must admit I was rather concerned when our son left with a couple of containers of live grasshoppers he’d bought from the local pet shop. He also took a roll of chicken wire. I haven’t heard a lot about what went on up there, but he crashed when he came home and was aching from head to toe, couldn’t move and was sporting quite a few cuts and bruises. No pain, no glory. Not sure what his sister got up to. She’s quieter and probably left her mark without detection.

It’s not a door, but it is red, and so it had to be included.

Anyway, I hope you and yours are keeping safe and well.

This has been another contribution to Thursday Doors, which is kindly hosted by Dan Antion from No Facilities https://nofacilities.com/.

Best wishes,

Rowena

PS This little Church was just down the road from Camp Tahlee and it looks like it’s no become a private residence.

Je suis Notre Dame…

“To know her, is to love her!”

The Beatles

Thank goodness, this isn’t a eulogy and has become more of an appreciation of our beautiful Notre Dame Cathedral. Indeed, these words are the outpourings of a heart which almost broke yesterday, as the blazing orange flames all but consumed her like a savage beast.  Yet, we’re not grieving her death, but are now grateful that she miraculously survived.

Like so many of us who have survived horrendous infernos of this magnitude, Notre Dame is still standing, yet all but destroyed.  I am a survivor myself and know that seemingly bottomless grief. Indeed, I have asked these very same questions myself…How did this happen? What has been lost? What is left? What can be done? I have also known that very same, fierce determination to get back on my feet and overcome like so many survivors. We will rebuild. Yet, it still hurts and the pain feels like it has no end. However, somehow you suddenly reach the other end of the rainbow and your ordeal seems like a bad dream, although the scars remain.

Personally, Notre Dame has never just been somewhere I went in Paris. Indeed, our connection has always been personal and it wasn’t just about the building either. No doubt, it’s the same for millions around the world and throughout history and we each have our own story to tell. Indeed, in a strange way and no doubt encouraged by Victor Hugo’s The Hunchback of Notre Dame, she’s almost come to life.  We can almost feel her pulse, her heartbeat and believe she knows and understands us in ways beyond human understanding. Indeed, as I watched those infernal flames blaze with such fury, I could hear her gasping for breath unable to discern whether she wanted to live or to die.

Of course, by now I was also walking through the streets of Paris crying and singing the words of the Hail Mary in solidarity with the people, although I didn’t know the words in French or in English. I didn’t need to. Notre Dame was in my heart. As Notre Dame burned, Paris might have been one of the largest cities in the world, but she was a village once again.

However, who was I kidding? I wasn’t out on the streets with the people of Paris. Rather, I was still stuck here on the other side of the world and couldn’t be there. Of course, it wasn’t quite the same sense of anguish you feel when a loved one is dying and you can’t get back. When you desperately want to hold their hand and say your “I love yous” and goodbyes and miss out. Yet, I still felt the need to vent. Respond. Do something.

So, I did what I could.

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Yesterday, on the way to the Art Gallery of NSW with my daughter, we detoured via Sydney’s St Mary’s Cathedral to pay our respects to the smouldering remains of Notre Dame and her extended global community. Indeed, I needed to pray and being there was the closest I could get to being near Notre Dame.

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Our daughter sitting on the steps of St Mary’s Cathedral on Tuesday. Not quite the same effect as Princess Diana at the Taj Mahal but there’s promise. 

 

Back when my husband first told me the news, I jumped straight out of bed and switched on the TV expecting some kind of mistake. Yet, there she was right before my very eyes…a blazing, orange inferno. Brutal, cruel and almost evil, she was trapped in the flames with no way out. Yet, the valiant fire fighters of Paris, just like those of New York on 9/11, were there fighting to put out the flames and save her from eternal destruction.

Notre Dame! The name says it all, even for me as an Australian.

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My backpack and I just before I left. 

On the 13th July, 1992 I arrived at Paris’s Gare du Nord with my backpack and I found my way to the Hotel Henri IV in Rue Saint Jacques only five minutes’ walk from Notre Dame. I stayed there with friends for a few weeks, exploring the city of light and romantic turmoil, while Notre Dame stood seemingly unmoved and her bells chimed.

Being immersed in all that history and architectural grandeur, was an incredible experience for a young Australian experiencing Europe for the first time. We had nothing like it. Unfortunately, the City of Love also turned out to be the City of Heartbreak and despair. Indeed, I’m sure it’s no coincidence that so many philosophers, writers and artists have gathered there. I definitely sensed a dark undercurrent to Paris, and perhaps in this context, Notre Dame needed to be the light.

Rowena Notre Dame

My parents met up with me in Paris and we not only went to Notre Dame, my father and I also had our portraits sketched out the front. While I don’t particularly remember the interior, I still remember going inside and experiencing the most incredible sense of peace…the peace which surpasses human understanding. I also remember feeling it was much cooler inside with a distinct temperature drop. Being July, it was boiling hot outside and perhaps it was a few degrees cooler inside the cathedral. I don’t know. However, this combined with the stained glass windows and subdued lighting did create an ambiance.

Yet, quite aside from that, I could really sense the comforting presence of God. Only a few weeks’ beforehand, my mother’s aunt had passed away. She and Mum were particularly close and brought closer still by Mum’s strict upbringing. So, although we’re not Catholic, we lit a candle for her. Lighting that wick, has always been special. However, it’s felt even sacred since the fire. It was such an incredibly poignant moment. I think we also lit a candle for Mum’s younger sister, Lyn, who’d suddenly been ripped away from us at 36 with double pneumonia. Lyn’s death was one of those wounds which never seemed to heal. Lyn was beautiful, vivacious and so young. Naturally, her death rocked everyone who knew her. It didn’t make sense and we just had to get used to living with our grief.

No doubt, over the last 856 years, millions have also had such moments where they’ve been  touched by God’s love and this indescribable peace at Notre Dame. Of course, I know this experience isn’t unique to us, although it certainly felt that way. People have prayed for the living, cried for the dead and wrestled with everything in between and Notre Dame has stood as solid as a rock through the French Revolution, two world wars, and hoards of visitors. Indeed, even that blazing infernal couldn’t destroy her completely, but it’s been too close a call.

Yet, she has also suffered terrible neglect, which has taken its toll. As Victor Hugo wrote in The Hunchback of Notre Dame:

 “(I)t is difficult not to sigh, not to wax indignant, before the numberless degradations and mutilations which time and men have both caused the venerable monument to suffer.”

So why was it so difficult to raise the money to restore and maintain this stunning, historic and sacred cathedral, which has always been at the very heart of Paris? It is hard to understand.

However, as we move forward as a global community, we now have the chance to show her the love we’ve always felt, but haven’t sufficiently expressed. She has given us so much, and now it’s our turn to give back in whatever way we can. For some of us, that will be in words or paint while others have been financially blessed.

Notre Dame needs to be that phoenix rising out of the ashes. We need to see that you can rise up from near total destruction, and start over not only as a building but also as individuals and communities. We can get better. Moreover, we also need to restore Notre Dame for future generations who will also be reaching out for God’s love and the peace which surpasses human understanding in an imperfect and often turbulent world.

Have you been to Notre Dame and would like to share your thoughts? Please leave them in the comments.

Best wishes,

Rowena

 

Christmas Coffee Share!

Welcome to our Christmas, I mean Boxing Day, Weekend Coffee Share.

We hope you and yours have had a wonderful Christmas, celebrating the season.

Not quite sure what to other you in the way of drinks this week. I’m leaning towards tea or coffee with a slice of Christmas Cake or toasted Stollen.

We celebrated Christmas Day with lunch at my aunt’s place with the extended family and then back to my parent’s place for “dinner”. The kids spent much of the day in the pool mucking around with my cousins. I didn’t get in yesterday, although I did manage a pre-Christmas dip in my parents’ pool.

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Never too old for pool toys!

It’s now Boxing Day Monday and we’re perched in front of the TV set watching the start of the Sydney to Hobart Yacht Race. Winds are currently 10-15 knots yet to the untrained eye, they appear stronger. The yachts are keeling over at about a 45 degree angle. While I’m no veteran of the race, they seem to leaning over more than usual.

Yesterday, my aunt asked our son when he’s going into the Sydney-to-Hobart. Give him a few years. He starts racing locally in January.

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Start Sydney to Hobart Yacht Race 2016.

By the way, Perpetual Loyal made it out of Sydney Heads first. We’re still watching, listening to all the sailing talk and giving our son a few lessons. I know watching sailing is no compensation for being out there yourself. However, this is his chance to learn from the masters…and my husband who is providing us with arm chair commentary.

Today, I’m following my father’s Boxing Day Tradition and not doing anything. Well, I am writing and jotting down all the snippets from yesterday.I know writing isn’t doing anything but it’s letting energy out, rather than taking energy in and that’s what I need. So, although I’m in my writing chair surrounded by the family and dogs glancing at the yacht race, I’m still in my own little space bubble. I need to breath. Stretch my wings again. I feel like I’ve been locked in a matchbox and I need to break free. I suspect that’s all the built-up pressure of the end of the year and I’m now  finding myself needing to reflect and debrief. Let myself flow. It’s been so stop start lately that I’ve become jammed somewhere in  between the accelerator and the brakes (if that makes any sense). That description makes a lot of sense to me.

By the way, the camera people were just catapulted off the back of the yachts as they leave Sydney Harbour, picked up by the rescue boat. It sure looked odd and more of an emergency than a planned operation, especially as there are sharks in Sydney Harbour.

Christmas Eve we went to Church and then off to a pot luck dinner. By the way, they were giving away hampers at Church and they were offering them to the person with the loudest voice. No surprises there. My son’s voice boomed out and we’re now feasting on chippies, fruit mince pies etc watching the race. Yum! I’m about to head out to the kitchen for a piece of toasted stollen . More yum. Couldn’t fit in half the goodies yesterday. So while I’m explicitly doing nothing today, I am feasting away.

We went to my aunt’s place in Sydney for the usual big, extended family Christmas and went to my parents’ place afterwards. No one was hungry although I did manage to squeeze in another piece of pudding, custard and brandy butter but only just!

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Lego Santa Loves Christmas Cake.

I’ve been blogging about the lead up to Christmas, which I thought you might enjoy. I wrote about The Meaning of Christmas Cake. After finally making my Christmas Cake, I’d packed it up to take to my parents’ place mid-week and the dog got in and ate it…Christmas Dogastrophy. Bilbo just asked me to clarify that it wasn’t him. It was Lady, who naturally ended up at the very top of Santa’s naughty list…not that it bothered her. She kept wagging her tail and looking up at us with her huge brown irresistible Cavalier spaniel eyes showing no remorse whatsoever.She very good at that!

Bilbo & Lady

Bilbo & Lady

I also ended up making a second Christmas Cake…the Aussie Harvest Cake. This adventure and indeed, it did turn into an adventure started out with driving round and round trying to find a bottle shop which was open at 10.00PM…All For A Sozzled Christmas Cake. If you’re not into making your own Christmas Cake, you might not appreciate that they’re very heavy drinkers. This one was demanding an entire cup of brandy. I’d be sozzled.

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Yet the adventures didn’t end there. I should’ve realized that3 kgs of dried fruit was hugely excessive and that this recipe would produce a monster cake to feed an army. Obviously, I didn’t and that’s how I came to develop the Christmas Cake Workout .

In addition to all the Christmas preparations, I also took part in Friday Fictioneers again. I’m really enjoying these challenges and have been thrilled with the results. If you haven’t tried writing flash fiction, I encourage you to have a go. You might also surprise yourself. American Diner Down Under.

Well, I hope you and yours have had a Merry Christmas and we also wish you a Happy and wonder-filled New Year!

This has been another Weekend Coffee Share hosted by Diana at Part-Time Monster and here’s the Link-Up

Love,

Rowena, Geoff, Mr, Miss, Bilbo and Lady.

For those who have been following the growth of the sunflower seeds, which were salvaged from the MH17 crash site site in the Ukraine, two are flowering for Christmas.

 

 

 

 

Poet in Paris 1992: Maestro

I wasn’t allowed to touch you.

Yet, you played my heartstrings

like a maestro making love

to his cherished violin.

Mesmerised by your song,

I swooped deep into your soul,

forgetting even how to fly

because we were one.

You and I connected through

a love far deeper than touch

our spirits knitting together,

stitch by stitch, into one.

You spoke my language.

Sang my song.

How could I ever grasp

why our love was so wrong?

That when spirits knit,

man and woman always risk

flying into the flame.

A flame which can burn!

That two should never

blur into one.

We each need to walk

in our own pair of shoes.

I was but young

but you…

you were not.

You should have known!

After playing on my heartstrings,

finding my song,

you cut me off with a knife.

Threw me back in the pond.

Alone, late at night

on the banks of the Seine,

La Belle Dame Sans Merci,

I am haunting this city of pain.

Yet, soft in the distance,

a violinist plays Vivaldi’s Spring.

A bud of hope in the darkness,

I now hear the baby birds sing.

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

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

Here’s a bit of a backstory to Maestro.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

xx Rowena

Compassion Fatigue: A Light Bulb Moment!

For so many with a passion for compassion, there can come a point where we need to reassess our vision. Admit that we have over-extended our scope or perceived list of responsibilities beyond our sphere and have actually gone too far. Moreover, although we not be thinking about compassion fatigue or burnout, we need to pull our heads in before we implode. Otherwise, instead of being able to help and support others, we risk needing help ourselves!

I would suggest that if you are watching ants lugging heavy loads with more than just a casual eye and indeed considering learning ant language so you can help them more effectively: “Hey, can I give you a lift?” Then, perhaps you have taken compassion just that little bit too far.

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There comes a time when especially the most compassionate souls need to re-visit their priorities before it’s too late.

 

I have been putting a lot of thought into compassion since I signed up for the 1000 Voices Speak for Compassion Movement where on this day Friday 20th February over 1000 bloggers worldwide have signed up to write a post about compassion on their blogs.

Here is a link to the project: http://new.inlinkz.com/luwpview.php?id=497564&fb_ref=Default

Today, is the United Nations Day of Social Justice. Thanks to my husband and has his particular way of challenging “stuff”, I would just like to stress that “social justice” has nothing to do with society taking justice into its own hands, mob rule or the formation of such abhorrent organisations as the Klu Klux Klan. Rather, it’s about giving everyone, as we Australians put it: “a fair go” and fighting against all forms of discrimination…even the insidious, invisible ones!!

Bloggers Around the World Unite: 1000 Voices Speak for Compassion.

Bloggers Around the World Unite: 1000 Voices Speak for Compassion.

Writing one post about compassion for me is impossibly difficult. It’s like taking me to the most sumpuous smorgasbord restaurant (all you can eat)  and being told: “You can only eat one thing!”

WHAT THE???!!

My husband would tell you that’s impossible. That I could never, ever go into a smorgasbord restaurant with all those tempting tables of every kind of Chinese, Thai, Italian, Mexican etc etc food each piled up as high as Mt Everest and all those tantilising aromas ticklooing my senses coaxing me to completely pig out: “Eat me! Eat me! I know you want to eat me.” THat’s before we even get to dessert and I can’t even think about chocolate without salivating, even in extreme heat when most mortals find the concept of molten chocolate abhorrent.  They want something cool.

THerefore, you won’t be surprised when I tell you that I’ve never left a smorgasbord restaurant without feeling incredibly ill and being reminded of that infamous restaurant scene where Mr Creosote explodes in Monty Python’s: The Meaning of Life:

 https://www.youtube.com/watch?v=aczPDGC3f8U

Unfortunately, my poor brain just can’t cope with sooo much choice and its default mode is:

“I’ll take the lot, thanks!!”

So with that graphic image of over-eating firmly etched in your brains, you’ll understand just how hard it is for me to write about just one aspect of compassion. There are literally limitless possibilities out there and a bit like Mr Creote, I could spew all those fabulous anecdotes and reflections out in the post, which would just be counter-productive….not to mention messy and very, very smelly, stinky and downright repulsive!!

MY instructor helping me up the magic carpet on my first ski lesson in 2013.

Giving me a helping hand: my ski instructor helping me up the magic carpet on my first ski lesson in 2013.

Just a few of the anecdotes I’ve considered revisiting today include address the love of a stranger and the compassionate support I received from my ski instructors who skied back down the mountain lugging my skis, boots and poles so I could take the chair lift back and conserve my small reserves of energy. Their compassion and using their physical strength for good, enabled me to ski down the best slope for my ability and give me the experience of a life time. It would not have happened otherwise and I would never have left the “magic carpet” or beginner’s area. Moreover, my testimony of skiing down the mountain for a second time after overcoming a flare up of my auto-immune disease, pneumonia and chemotherapy would not have happened.

Skiing down the mountain at Perisher in August 2013.

Skiing down the mountain at Perisher in August 2013.

I also wanted to write about some of the ways people actually treat people with disabilities with anything but compassion. Things like parking in disabled car spaces without a permit, crashing into people using a walking stick and how there is the completely inadequate social support to allow people with disabilities to live with dignity. For example, despite have a muscle-wasting life-threatening disease, it took me five years to get any domestic assistance and that is completely inadequate. There are also no long term supports for parents of young children who might be dying or living with severe, disabling illness and who require ongoing child care but lack the second income to pay for it.

Just to compound this sense of paralysis through analysis and compassion overload, I started looking up inspirational quotes about compassion.

Some were beautifully poetic:

“Grief can be the garden of compassion. If you keep your heart open through everything, your pain can become your greatest ally in your life’s search for love and wisdom.”

Rumi

“The dew of compassion is a tear”.

Lord Byron

However, reading through compassion quotes became quite challenging and rather than concentrating my compassion into some kind of manageable, bite-sized portion, it expanded the scope exponentially:

“Compassion, in which all ethics must take root, can only attain its full breadth and depth if it embraces all living creatures and does not limit itself to mankind.”

Albert Schweitzer

“Let us fill our hearts with our own compassion – towards ourselves and towards all living beings.”

Thich Nhat Hanh

“If we’re destroying our trees and destroying our environment and hurting animals and hurting one another and all that stuff, there’s got to be a very powerful energy to fight that. I think we need more love in the world. We need more kindness, more compassion, more joy, more laughter. I definitely want to contribute to that.”

Ellen DeGeneres

Okay. So after reading all of these quotes, I’m starting to think i should go back to the ant I saw this morning lugging that mighty big crumb and offer it a lift. After all, an ant is one of these living creatures we’re been calling on to assist!!

Ouch! Double ouch!! My brain hurts. Really hurts. This compassion fatigue seems terminal!!

But to add further salt to the wound:

“Throughout history, it has been the inaction of those who could have acted; the indifference of those who should have known better; the silence of the voice of justice when it mattered most; that has made it possible for evil to triumph.”

Haile Selassie

That’s why I decided to write about compassion fatigue. Not the clinical version but just the garden variety which anybody with even just the smallest social conscience can experience. After all, each of us only has so many gold coins we can put in the collection tin and some of us, especially those living with any form of severe chronic illness, can feel like we could warrant some charitable donations ourselves. That’s particularly after paying for prescriptions, a medical specialist or about ten or when all our household appliances decide to breakdown at the same time. Moreover, if you have kids, you are the charitable institution. I remember my Dad telling us that: “Money doesn’t grow on trees”. “Kids, I don’t have a money tree, you know.” I don’t know whether we ever believed him. However, I still kind of believe in Santa, the Easter Bunny and the tooth fairy and given their generosity to kids worldwide, there has to be a money tree or at least a magic wishing tree out there somewhere!!

However, all this takes me back to what has almost become a cliche:

Think global: Act Local.

We can not help or save everyone but the chances are that we can help our neighbours in small, little ways that don’t really cost much such as giving people a lift, mowing their lawn and you know what I value the most: a smile and a hug. They are absolutely free and we could keep on passing them on. Well, we would be able to send and smiles and hugs right around the world if Australia, as our national anthem so ridiculously put it, wasn’t “girt by sea”. Gee, that ocean can get in the way at times!!

That’s been my modus operandi for awhile and while blogging and recent world events have extended my scope, I will still focus on the home front. After all, “charity begins at home”.

” I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”

Mother Theresa

I almost forgot to mention this but unlike Atlas,  we  don’t have to carry the weight of the world on our shoulders. The state of the world, the environment and all the people and animals in it are not our responsibiity alone. While as individuals we might be ineffective on our own, when we collaborate we can move mountains. Moreover, through the power of prayer, we can also call on divine intervention. Never under-estimate the power of prayer!! Miracles can and do happen although I must also admit that sometimes for whatever reason God seems to be deaf…just like our kids.

Here are some of the other posts I have written about compassion and tomorrow I will post a selection of posts which were part of 1000 Voices Speak for Compassion.

Brain Plasticity & Saving Two Australians on Indonesia’s Death Row: https://beyondtheflow.wordpress.com/2015/02/19/brain-plasticity-two-australians-on-death-row/

The Aftermath of the MH17 Tragedy: Compassion in Action!! Sowing those precious sunflower seeds: https://beyondtheflow.wordpress.com/?s=sunflower

Emotional versus Physical healing: The Struggle To Heal The Broken Foot & the Sydney Siege: https://beyondtheflow.wordpress.com/2015/02/09/the-struggle-to-heal-the-broken-foot-and-the-sydney-siege/

Love of a Stranger: https://beyondtheflow.wordpress.com/?s=love+of+a+stranger

Skiing: Back to the Mountain Almost: https://beyondtheflow.wordpress.com/2014/08/17/back-to-the-mountain-almost/

Have a wonderful International Day of Social Justice and I’ll start the ball rolling by sending a smile and a hug to you!

If you have participated in 1000 Voices Speak for Compassion, please leave a link and even a brief intro to your post in the comments here for inclusion in a follow-up post.

Love & blessings,

Rowena

How A Friend Can Change the World…

When the night has come
And the land is dark
And the moon is the only light we see
No I won’t be afraid
No I won’t be afraid
Just as long as you stand, stand by me

John Lennon: Stand By Me.

https://www.youtube.com/watch?v=4vSWHkxZgOI

Surprise! Surprise! It’s me… Bilbo (Rowena’s original dog). I can’t believe I’m back from the very brink after surviving what became a highly controversial campaign to unite cats and dogs. Talk about setting a match to a fuse!!

You might recall that I’d  jumped onto Mum’s brand new Twitter account with my infamous hashtag: #cats and dogs are friends. Much to my horror, rather than building bridges between cats and dogs, I actually attracted the wrath of both species and received multiple, very nasty, terrifying death threats.

Yet, against the odds, I have survived. I’ve been attacked by dogs. Attacked by cats. Yet, Lady, my fearless canine companion, has stood by me. She not only brought me food during my darkest hours of need, she also spoke out and refused to be a bystander. She wanted to take my message of peace to the masses and help them see reason. Where I had drawn all sorts of fancy equations all over my chalk board which made perfect sense to me but evidently to no one else, Lady was much more direct. Quite simply, as the cats and dogs were viciously fighting; gnashing their teeth, scratching, screeching, barking and growling; she very simply said:

Woodstock Festival, August 15 to 18, 1969.

Woodstock Festival, August 15 to 18, 1969. (Mum was 3 weeks old at the time, by the way!)

“Are you proud of yourselves?”

After all, sometimes even the most noble-minded among us can get caught up in our own cause and lose all sense of perspective.

Lady’s intelligent, quick thinking stopped everyone in their tracks. Don’t ask me how because such brawls between old foes have never stopped like this before. Suddenly and quite inexplicably, all eyes both feline and canine were fixed on my scruffy black and white friend, who although she’s called Lady, really is more of a “ruff ruff” in so many, many ways.

Lady called out again to emphasise her point.

Yoko Ono and John Lennon's message still rings true: Give Peace A Chance. The trouble is how to maintain the peace when there is still so much evil in this world.

Yoko Ono and John Lennon’s message still rings true: Give Peace A Chance. The trouble is how to maintain the peace when there is still so much evil in this world.

“Are you proud of yourselves?”

A unified sense of shame descended upon the rabble and there was absolute silence.

“We’ve been fighting long enough. It’s time for cats and dogs to mend our smashed and broken fences and build a new way forward based on tolerance and understanding. We have been fighting since the very dawn of time and yet we don’t even know why. What is our cause? We live in our separate worlds, apart from the odd exceptions who somehow manage to live in harmony, without any form of interaction or communication. Most dogs know no cats and most cats know no dogs. Indeed, this war has become some dreadful form of genetic hatred passed on from one generation to the next… just like our DNA. Indeed, we’ve even assumed it’s in our genes. That hating each other is who we are.” Lady said.

“It doesn’t have to be this way,” Lady declared and then paused. There was still absolute silence and all ears and eyes were on her and yet nobody really understood why. Lady was just a scruffy little black and white dog with more of a reputation for food thievery than an good example.

“Perhaps, Bilbo took his peace efforts too far too soon. Indeed, it might be too early for dogs and cats to become friends. However, as he said… small steps. He probably just got a little over-enthusiastic. We dogs do have a habit of that.”

“I do think, however, that Bilbo was on the right track trying to bring about change by applying the Golden Rule. I think we’ve all forgotten what that is.

The Golden Rule: Treat others as you would like to be treated.

Bilbo also touched on an revision of the Golden Rule:

The Inverse Golden Rule: Treat others as they would like to be treated.

This is perhaps more useful for improving relations between cats and dogs. After all, we’re actually quite different and don’t really like most of the same things. Rather than being a stumbling block, these differences could actually be a good thing for friendship. We’re not actually competing for the same things. We’d be equal but different.”

It soon became clear that this once terrifying, violent mob of cats and dogs had somehow fallen under Lady’s spell.

Then she added: “If cats and dogs can mend fences, perhaps then those humans might even get along better as well. They can be an arrogant bunch…so convinced they have all the answers and are far superior to the likes of us but you never know. Seeing cats and dogs finally living together in peace might just give them the jolt they need. Then, we’ll all finally be able to sleep at night, instead of waiting for the bomb to go off.”

“I guess you could call it enlightened self-interest.”

Wow! I was stonkered by this transition in Lady. There I was thinking she was purely decorative and not any use at all. While I was hard at work, she was just battering her puppy dog eyes to get more treats. Then out of nowhere, she becomes the change which I’d been writing so much about. I was only ever able to theorise and philosophise but Lady could act and act she did. Firstly, by feeding me in hiding and keeping me safe. Then, she rallied behind the cause. Courageously confronting a dangerously out of control mob of angry cats and dogs, she brought about peace. They actually stopped fighting and from what I can see, we’ve all changed. Cats and dogs might never be friends but at least we’ve come to realise that this war is a choice. It’s not part of who we are. It’s not etched in our DNA. It can stop.

We live in hope!

We live in hope!

Lady had been only one dog and very much a lone voice calling out through a very hostile wilderness. Yet, good triumphed over evil. Love and tolerance overcame hate, violence and judgement. We will never be cats and cats will never be dogs but it doesn’t have to be war and I can even sense forgiveness.

I was completely blown away by Lady's powers of persuasion. Those puppy dog eyes work a treat!!

I was completely blown away by Lady’s powers of persuasion. Those puppy dog eyes work a treat!!

I’ve also learned a few things. While it’s good to have friends with the same interests and who are just like me, it’s also good to have some differences. I’d never thought of this before. As much as I love Lady, especially after all of this, we do compete over so many things such as: pats from the family, dinner, bones and tennis balls. On the other hand, that pesky cat… oops, I mean the nice cat from next door, leaves all of them alone. I could have them all to myself. That really should make us the best of friends.

Cats and dogs have been fighting for so long that we’ve become blinded to everything we have in common. Although I’m struggling to think of anything right off the cuff, I’m sure there had to be something. If only I could meet a cat and have some form of meaningful dialogue before it runs away, I could elaborate. Well, at least we have four legs, a tail and red blood.

Thinking about how Lady was able to achieve so much, perhaps Eisenhower was right after all:

What counts is not necessarily the size of the dog in the fight – it’s the size of the fight in the dog.”

Now, I am almost a happy dog. That’s pretty darn good for an old dog whose food bowl always seems to be empty. Forget about this half full business. Now, perhaps you’ll understand why I struggle to find the bright side. However, it’s good to be thinking about food again, instead of being being: “The Hunted”.

Yes, our world definitely needs a lot more love and a lot less hate!!!

When I got home, I sang Lady this song and we finished it together:

When you’re down and troubled
And you need some loving care
And nothing, nothing is going right
Close your eyes and think of me
And soon I will be there
To brighten up even your darkest night

You just call out my name
And you know wherever I am
I’ll come running to see you again
Winter, spring, summer or fall
All you have to do is call
And I’ll be there
You’ve got a friend

If the sky above you
Grows dark and full of clouds
And that old north wind begins to blow
Keep your head together
And call my name out loud
Soon you’ll hear me knocking at your door…

Carol King: You’ve Got A Friend.

Love through new beginnings,

xx Bilbo

PS: All donations to my food bowl will be gratefully accepted!!

PPS:

PS: If you are interested in reading my research into the Golden Rule, my posts start here: https://beyondtheflow.wordpress.com/2015/01/09/greetings-from-good-dog/

If you are interested in hearing from Lady, click here for some of her posts:

https://beyondtheflow.wordpress.com/2015/01/07/my-dog-post-lady-at-palm-beach-sydney/

This is Mum’s post: A Portrait of a Lady, which tells a few truths about my little friend.

https://beyondtheflow.wordpress.com/2014/10/03/portrait-of-a-lady/

 

Angels and Shepherds Smile at the Camera

We might have had a real baby playing baby Jesus this year but there weren’t even any dress-up sheep this year for the shepherds to round up…just toddlers. Once again we were late for Church even though I was doing a reading and Mister was a shepherd and Amelia an angel. But we made it… Didn’t break any bones before this “performance” and the cough behaved itself as well. Even managed to photographed the children afterwards in costume in front of the tree.

I almost forgot to mention that we drove home via a scenic tour of the Christmas lights. decorating your house in Christmas lights isn’t huge here but some people really have gone all out. Being summer and daylights savings time over here, the kids are usually in bed before you can really get a good look at the lights. Hence, it’s become a bit of a tradition to have a look at the lights after the Christmas Eve Service.

Anyway, we could like to wish you and yours a loving and blessed Christmas and a peace-filled New Year. Let’s see if we can really set the Golden Rule in motion in 2015!

Love & God Bless,

Rowena Geoff, Mister, Miss, Bilbo and Lady xxoo

Angel and shepherd smiling at Mummy's camera.

Angel and shepherd smiling at Mummy’s camera.

Oh Christmas Boot!

Oh Christmas Boot!
Oh Christmas Boot!
Your tinsel shines so brightly!

After breaking my foot the other night, there weren’t going to be any fancy high heels for me this Christmas. Oh no! As my witty daughter pointed out, I was off to the “Bootique” instead.

This boot might be kind of grey, clompy and unattractive but I’ve never been so happy to see a boot before in my life. It was almost an instant fix… a miracle cure. I still took painkillers for a couple of days but wearing the blessed boot made a huge difference. I can walk around and I’m not going to have a near-death experience tripping over myself on a tangle of crutches. As you could imagine, if I could break my ankle on a relatively flat stretch of grass,I would have killed myself on crutches!!

Being 8 years old, our daughter wanted to sign my boot. Even though I didn’t have a cast, that’s what you do when you’re an 8 year old kid whenever one of your friends breaks anything. You have the fun of signing the cast while the other kid endures all the pain.

MIss decorating my foot with love.

MIss decorating my foot with love.

So instead of signing my cast, my daughter and I set about turning the boring grey, boot into a Christmas tree. She wrapped it in red tinsel and added decorations. While we were snapping away taking photos, I even threw a Santa hat over my foot. Yes, we were really getting into the Christmas cheer. Just had to wait til the kids went to bed so Geoff and I could get stuck into our box of Lindt dessert chocolates which were conveniently on sale before Christmas. Last night, there was also a glass of chilled Moscato! Now, we’re really living it up!!

Carpe Diem: Seize the Day!! It's are rare occasion that I'm able to wear heeled shoes but I wore these fabulous beauties to my cousin's engagement party at Circular Quay.

Carpe Diem: Seize the Day!! It’s are rare occasion that I’m able to wear heeled shoes but I wore these fabulous beauties to my cousin’s engagement party at Circular Quay.

What I particularly liked about our creative and Christmassy makeover of the boot, was that we were taking something bad and perhaps not turning it into a positive but certainly turning things around. Turning sadness and pain into a smile, a laugh..even if it’s only for an instant. As you have no doubt found yourself, laughing at adversity and bad luck is strangely healing…even when we hurt! It might be a cliche, but whatever doesn’t kill us, does make us stronger and I’ve been through much worse than the broken foot! This means that if and when we break a foot, we can still get up on stage and perform. We can push through the pain to see our children stand up on stage and sing, dance, play their guitar, before we collapse in a screaming heap. I’ve been home all week and the kids have now been dispatched to their grandparents but we are okay. We’ve acknowledged the bad stuff and worked through it. Laughed and poked fun at misfortune and we’ve kept going.

The kids were so loving and sweet. Mister brought me over a foot rest but Miss decided to be the foot rest herself.

The kids were so loving and sweet. Mister brought me over a foot rest but Miss decided to be the foot rest herself.

It just would have been nice to have had a hassle-free Christmas this year after going through chemo last Christmas and spending Boxing Day in hospital. After all, as much as you can put a positive spin on a chemo Christmas, it’s still what it is. As much as that chemo saved my life and brought us hope at a very dark hour, there are still many, many other places I could have been. Yet, that’s okay. I am always thankful. The chemo didn’t hit me as hard as I’d thought and instead of being in a cast this Christmas, I have a removable boot and I can get my feet wet. This is a very significant point when you’re spending summer at the beach.

In other words, I can acknowledge my gripes without becoming another Grumpy Cat.

Whatever happens in life, we have to keep moving and keep turning our bad luck into our funny stories, jokes and anecdotes. That, along with my faith and knowing that God is with me no matter what…these are the things which sustain me along the road and give me hope.

By the way, I must admit that I’ve felt mixed emotions eating Lindt chocolates after the siege. I live near Sydney and Martin Place is at the heart of our city…particularly now as it overflows with floral tributes, tears and love for the hero hostages who lost their lives in the siege. Is it okay to enjoy a beautiful Lindt chocolate when those precious people lost their lives in the Lindt Cafe? Shouldn’t I be more noble, self-controlled and simply go without?

I have given this a bit of thought and decided that it is okay to both eat Lindt and give Lindt this Christmas. It’s not that I believe in just getting on with it but I think it’s okay. You can’t blame a chocolate for such evil…only for the usual temptations of over-indulgence. Perhaps, this is being presumptuous, but I don’t think the hostages would want us to stop buying Lindt on their account. They were all lovers of Lindt which is why they were in that cafe in the first place. I also have to admit that I have terrible willpower and what with my broken foot and dreadful cough, there’s no better remedy than chocolate…especially Lindt!!

After breaking my foot, I’m particularly hoping a chocolate a day will keep the doctors at bay…especially before Christmas!!

xx Rowena

PS: It is a strange irony that I managed to ski at Perisher for 5 days without falling over and yet broke my foot simply walking along the grass at school.

Skiing down the mountain at Perisher in August 2013.

Skiing down the mountain at Perisher in August 2013.

Hurray! V for Victory!

Yes! The treatment is working and the good news is that my blood test results are right down in the remission zone…the best result I could have asked for. I’m absolutely stoked!

Thank you! Thank you! Thank you!

I am really feeling exhausted now. Very, very tired but I really wanted to share my good news with absolutely everyone who is traveling along this journey with me, beside me or especially going down the same or similar roads themselves. We are not alone and we all have to believe in miracles. Have faith. After the success of skiing down the mountain in Perisher last year only to run straight into pneumonia and a life threatening flare up of my auto-immune disease, I really doubted that I still had the strength or capacity to turn my mountain around again.

Skiing down the mountain at Perisher in August 2013.

Skiing down the mountain at Perisher in August 2013.

Well, to be perfectly honest, I didn’t. It took a team of highly specialised doctors, toxic drugs, fabulous nurses, support from family and friends, a highly entertaining and philosophical driver to and from my treatments provided by Carer’s Respite. A wonderful husband who is married to a mad writer with a chronic illness (I’m not sure which is worse but unfortunately being married to a writer or any other form of “creative” doesn’t entitle you to a Carer Payment or any other kind of practical support. My chronic illness does.) My parents and brother, particularly my Mum, have looked after the kids as well which has given me the capacity to rest and heal. They also let me stay in their soon to be home at Palm Beach in a most stunningly inspirational location. I’m sure this has really boosted the healing process. I’ve also been swimming in the pool to improve my lung capacity. This result has taken a lot.

Above all else, I believe it took God. I firmly believe that he is with me. I still don’t understand why he didn’t stop me from getting this disease in the first place. Yes, I do actually. The way I see it, everyone has their lot…their challenge. I don’t know whether this is designed to stretch us and help us to grow but that’s certainly been the end product of my experience. That said, I have also chosen growth over anger, stagnation and bitterness. Our lot isn’t easy either. It is very tough on our entire family, extended family and the ripples resonate out to friends and even strangers. When it flares up, it is pretty demanding and all-encompassing.

My situation isn’t what I’ve call a healing. I’ve gone into remission and this more a case of management, rather than cure. This chemo was round one. I will now have 4 fortnightly sessions until my specialist gets approval for my next treatment a drug called cellcept. I haven’t looked this up yet so goodness know what that’s going to do to me but as I’ve said before, I’ll do anything for love and the list of nasty toxic drugs I’ve taken is adding up.

Here is a quick photographic tour of my day. I had intended to take photos of me actually having chemo and lugged my huge SLR around the hospital. Took other photos and forgot the main one. Anyway, as it turned out, it wasn’t my last chemo treatment so further opportunity awaits.

Writing in my journal while waiting to see my rheumatologist. What are the results going to be?

Writing in my journal while waiting to see my rheumatologist. What are the results going to be?

Celebrating Victory with the healing paper cranes at the hospital.

Celebrating Victory with the healing paper cranes at the hospital.

I also wanted to share with you my immediate response when I found out my treatment had worked. When I was first diagnosed with this disease, I had called it “Dermie”. Dermatomyosistis was way too long and unpronounceable. Anyway, soon after my diagnosis I was sitting in the food court in the old hospital when I wrote what turned out to be a very cathartic story about it. In the story, I was being pursued by Dermie, a very possessive lover who was relentlessly stalking me. Anyway, the story ends with a comic twist when I introduce Dermie to the Internet dating site RSVP and he races off and meets someone else. I still remember how much I laughed when I wrote that twist. It felt so good and was so cathartic! I felt all this negative energy immediately pour out of my system. It was just fabulous!

Looney Tunes Metal Sign/Poster - Yosemite Sam

Anyway, today when I heard the good news, I pictured this little cartoon character with twin pistols both barrels pointed straight at Dermie . Bang! Bang! Not only did he shoot Dermie blowing him to smithereens,  he was also jumping up and down on the spot laughing. He was actually happy! Thrilled! This character was totally warped!

Now, as much as I wanted Dermie dead and out of my life for good, I’m not into violence and had no idea who this gun-slinging maniac actually was until asked my dearly beloved husband. Turns out it was Yosemite Sam who I can’t even remember with my conscious brain so I have no idea here he found his way inside my head. (Turns out he’s from Bugs Bunny. Obviously a deeply repressed childhood memory! More therapy sessions required).

However, I’m sure I’ve already mentioned that I’m on a lot of drugs with these treatments and they are definitely doing strange things to my brain. This is absolute confirmation!!  I actually packed a much more wholesome and even spiritually minded book in my bag when I left for the hospital this morning: Conversations with God: An Uncommon Diologue by Neale Donald Walshe. There were no gun slinging cartoon characters of any description!

Perhaps, the devil made me do it…

xx Rowena

Back home with my beloved doggie...a selfie.  Ended up writing down there debriefing myself...and him , of course!

Back home with my beloved doggie…a selfie. Ended up writing down there debriefing myself…and him , of course!

Chemo Adieu and Getting Through

Wednesday 22nd January, 2014

8.30AM Coffee and muesli

There is silence and almost perfect stillness outside. The cicadas are quiet…absolutely quiet, which is rather odd. Depending on how you feel about the sound of cicardas, there has either been this constant deafening siren blaring throughout my time at Palm Beach or the rhythmic chant of an Australian summer. I have always loved the cicadas and always have to pick them up and feel them walk up my clothes with their sharp claws. I get an absolute thrill even now at the more mature age of 44 when I manage to spot one and pick it up and hear a loud protesting buzz. While I’ve been here, I have also been something of a cicada rescue service. Only this morning, I spotted one out on the balcony under the gaze of a feral Noisy Minor bird and moved it on. The silly thing was just sitting there completely paralysed as though you couldn’t see it. Hello! Unfortunately, the cicada on the window sill wasn’t quite so blessed. It’s been captured in a spider’s web and mummified in silk.

There was heavy rain last night. The dog is soaked and the canvas outside has been painted a very dull grey. I don’t know whether the tide is going in or out. I should. I just don’t seem to have that knack of looking out there and instinctively knowing. No doubt I could probably work it out but when I check back soon, I’ll find out anyway.

I feel like I am on very borrowed time today. It is the last day before my last chemo treatment. Tomorrow, I am also finally meeting up with my rheumatologist to not only find out what happens next but also get the verdict. Hopefully, it won’t just be a V for verdict but also V for Victory. Oh how I would love a V for victory! I have had so many serious scares with this disease and so far we’ve been able to fight them off and win. It really has been a very long bombing campaign with me scampering along the ground running for cover or like the people of England sheltering in the tube during the London Blitz, bunkering down and staying out of sight.

To be perfectly honest, I haven’t really been thinking about getting my results all that much. I’ve been really focused on my writing as I have been mega inspired and trying to get all that written down has been a massive job. I am working on a diarised account of my chemo experience, which ironically is intended to be a funny book. When I first considered making it funny, I was rather sceptical. “As if!” Here was this hellish experience of having all-consuming nausea and throwing your guts up not to mention overwhelming gripping fatigue. I just expected to spend summer in between lying in bed upstairs with the air-conditioner on and rushing to throw up in the loo. Obviously, not very attractive postcards from Palm Beach but it was only six weeks and such a short blip in my life that it was nothing…as long as the chemo worked.

At times, I have almost forgotten or put aside the fact that I am having the chemo for a purpose. The purpose isn’t to survive chemo and to get through the treatment, although in this instance you would definitely say that is secondary goal. Chemo is toxic, nasty and in itself can knock you off. The real goal is to gain control of the dermatomyositis as my lung specialist would say and get me into remission again.

However, this is the incredibly scary part because that is only something we can influence. We can’t control it. That has been proven time and time again when this wretched disease flares up yet again and reasserts its dominance. Reminds me perhaps that while it might not be the boss, it has aspirations! Yet, I’m a fighter. I’m the quintessential Aussie battler. When I said that I would do anything for love and I would fight this disease with absolutely everything I’ve got and more, wretched Dermie didn’t know who he was up against. He has to deal with Roweeee. That’s Roweeee with four eeee’s swinging from the chandelier like Tarzan. I am going to win…at least I jolly well hope so!

The trouble with fighting this auto-immune disease is that I am actually fighting myself. An auto-immune disease develops when your body attacks itself so it is actually you fighting yourself. Now, the trouble is that when you are fighting yourself, you are evenly matched. I’m no expert in military strategies but it seems like I am never going to win in any kind of hand-to-hand combat. We are evenly matched. My only hope is some kind of very unconventional, surprise guerrilla attack. Or perhaps by blending in really well with my surrounds and just quietly disappearing. You know those games of hide and seek where the child hides so well that everyone else has given up trying to find them and they’ve moved onto something else and Mum is just about to call the Police when they finally poke their little head out again.

However, most of these manoeuvres are out of my hands. My rheumatologist is the Commander-in-Chief assisted by the lung specialist. I am sure they are not acting in isolation either and have consulted other world experts in dermatomyositis. Given how rare this thing is, that’s hardly a huge effort. There is a Myositis Clinic at John Hopkins in the States and you would expect doctors to confer and gather data on this rare disease. We all need to do whatever we can to make it easier for those who are following in our wavering footsteps.

I am finding it particularly helpful to write about my chemo experience. I am not just doing this for myself and to fulfil my long held goal and need to get a jolly book actually published but I’m doing this to help others and to be their chemo friend. You really do need someone to chat away and talk to or at least I do and you’re not always well enough for visitors and to actually talk. It’s more a case of chatting away in your head which means you’re not going through this thing alone. You have a friend. I don’t even really know who I am talking to as I write. When I was in high school, I had a diary and it was addressed to Dear Anne as in Anne Frank who wrote her experiences of being a Jewish teenager in hiding to “Dear Kitty”. Of course, this mystical diary person understands absolutely everything you are going through without query or judgement. I can see them sitting there on the edge of the couch with a cup and saucer in hand intently listening to each and every word I say.

Of course, this journal world is so different to the real world. For starters, I am alone down here at Palm Beach. I have no one to talk to. Correction…I have the dog. While I must say that he makes almost the perfect companion and is one of the best listeners I’ve ever come across, there are certain distinct differences that I really can’t overlook. The dog is a dog and even if I do connect with him emotionally and know that he gets me, he can’t be my perfect companion. He’s not allowed in the house and he’s not allowed at the beach either. He is actually rather restricted.

Instead, I find myself chatting in my head and writing in my journal and my blog. My brain is rather hyperactive constantly beavering away. I am so very inspired and no doubt a bit manic from all the prednisone. It might be destroying my bones but it’s powering up my mind!

Back to tomorrow.

Tomorrow is V-Day. V for verdict and hopefully V for victory. After exploring Beethoven and having my healing Reiki experience and photographing waves at Whale Beach, I really need to focus and psych myself up for tomorrow. What will it all mean?

These are the three outcomes:

  1. CK reading is back under 200. The treatment has worked!
  2. My CK reading has come down somewhat but isn’t in remission and the treatment has been partially successful. I guess here we’d be looking at a reading in the range of 300-600.
  3. It hasn’t worked and my CK reading is over 600.

Of course, I would love the treatment to work! I would love to be in remission! I would love to send Dermie running to the hills lugging his heavy cases and watching his clothes tumbling out along the beach behind him. I would dearly love Dermie to get well and truly lost never to return. Oh please no one give him a compass! I don’t want him back!! No! No! No! No! No!

But we’re not living in a perfect world. Although I have made a conscious decision not to look up the stats on this treatment, I know that it is not 100% guaranteed. I know not everyone responds. There is a gap and it is a significant gap and I also know that I have a fairly aggressive and very persistent form of the disease. As I said, I am fighting myself and I’m one hell of a fighter! I don’t know what I’m going to do if it hasn’t worked. Oh yes I do. I’m going to cry! I’m going to cry and cry and cry and cry until my tears fill up the bay. Then I’ll fight back. Keep going. Persevere. We’re going to get this disease even if it gets me first.

By the way, the tide is coming in. I didn’t need special tide reading skills after all. I just had to wait.

I just rang Geoff to see whether he thought I should ring my GP for my results.

In a way it made good logical sense to get the results today to see whether Geoff should take time off to go to my appointment with Professor tomorrow. Plan ahead. I also probably preferred the idea of getting bad news in the privacy of home when I could become a blubbering mess without having to try to keep it together. I know hospitals are places of sickness and dying and that it is perfectly acceptable to fall apart there but even in the midst of utter sadness and heartache, I’ve still wanted to keep it together. I have dreadful memories of clutching my one and only tissue while praying in the hospital chapel. Naturally, that one and only tissue couldn’t handle the job.  It was like the little boy with his finger in the dyke…totally overwhelmed. I remember trying to fix myself up enough to bolt into the hospital toilets and then went into the Pink Ladies and bought a packet of tissues. It was funny because the lady said something about hayfever being bad this time of year and I don’t know whether she was just helping me save face or whether I’d fooled her completely.

How stupid of me! There I was a mother of two young children staring death in the face and I’m trying to keep up appearances. Trying to stop the jolly dam from flooding when I really just needed to cry and that was fine. Even in that darkest of dark hours, I was trying to be strong. Stand tall. Stitch myself back together and not fall apart. In a sense, these are good qualities especially for a fighter. You have to dust yourself off and get back into battle again. You can’t afford to lie face down in the mud or the enemy will get you for sure!!

That said, it is quite permissible and indeed perhaps required that you have a break so your wounds can heal. You rest and renew your strength so that you are better equipped to fight. No point dragging yourself into battle. You’ll never be able to swing your sword.

So far I have only mentioned my doctors in terms my combat team but it is a multi-disciplinary team assault. I am seriously praying that God will heal me using whatever means. He is really the ultimate Commander-in-Chief. He is the one who decides whether I live or die although I do actually believe that he has given me quite a lot of say. I didn’t have to go and get that first CT scan of my lungs two years ago. I didn’t really have symptoms of Institial Lung Disease (ILD) at the time. I had read an article recommended by the Myositis Association of America which said that ILD was more common in myositis patients than previously believed. I have the JO1 antibody which means that I am more at risk of developing ILD so I was already forewarned. I also knew that with any problem, you are best hitting it early to get the best possible outcome. That’s the old stitch in time saves nine approach. Those CT scans were devastating because my very worst fears were confirmed. I had ILD. However, the good news was that it wasn’t active and it was minor. I was safe…at least for now. The other good news was that we were well prepared if and when it went nasty. I now had a lung specialist who knew me and the disease and he also worked with my rheumatologist. I had a team. So when the CT scans showed that the ILD had progressed and had become “established”, I already had a team in place. They met. Worked out the best approach and bang it happened straight away inspite of Christmas and the fact that nothing even happens in Australia in January. We were onto it.

At the same time I’ve been having chemo and zapping my body, I have also been exercising. I’ve been swimming 20 laps of the pool around 4 days a week. I really don’t like getting wet and I do enjoy it once I’m in but this isn’t something I like. It is something that’s a conscious grudge effort. I do it because I am trying to get the very best out of whatever good parts are left in my lungs. I am focusing on the cells which work, not on the cells which don’t. I really don’t know enough about how lung cells work and I know there’s scarring and they talk about the fibrosis being permanent. Yet, at the same time, I think about trumpet players and swimmers and I’m not sure whether they actually have scientifically proven bigger lungs but that’s the impression I have. You hear about all those Olympic swimmers who started out swimming to improve their asthma and it works. Geoff’s uncle Claude was told he was going to die from lung disease. He was a smoker and he quit immediately and survived that crisis.

When I think about the statistics, I am trying to think of what I can do to get myself down the winning end of the equation. Somebody is going to die very quickly from this disease and someone else is going to respond brilliantly to treatment and go into a 100% perfect remission and never hear from this wretched disease ever again. How do I give myself the very best chance of being the winner and having my V for victory? What can I do? Me as a small, seemingly insignificant untrained individual…what can I do?

Probably the very most important thing I can do is own my disease and take responsibility for it. I routinely monitor my CK levels so I know where I stand. I don’t just walk away and leave my disease to manage itself. I don’t turn my back and say “I don’t want to know”. I am checking. The frequency of these checks changes depending on the results. I’ve had quarterly blood tests and I’ve had them weekly but I’ve had them. They keep me informed and keep my medical team in some kind of “control”.

If you have read my blog, there a story on there about kayaking and how maintaining your goal takes constant monitoring and correction. That you just can’t let the kayak drift or you’ll have to expend alot of energy to get back on course.

That’s what it is like with this disease.

Taking responsibility also means that I know my own blood test results and I file my reports. I have a bit of a mental picture of how things have gone over time and what has been the most likely trigger for my flares.   So far it appears that the prednisone can’t go below 10mg and flus and cold don’t help either.

Doing whatever it takes to maintain a positive mental attitude. You really need to be in peak mental shape to fight a chronic, long term life-threatening disease especially when you have a husband and little kids and a Mum, Dad, brother, Aunties, Uncles, sister-in-laws, nephews, nieces, cousins, friends.

Since I’ve been having the chemo, I’ve pictured like a set of scales. Bad stuff on one side and good stuff on the other. The more bad stuff which piles up, the more good stuff you need to do to counter balance it. So when it came to me and the chemo, I asked my Dad if I could stay at the beach house throughout to give myself the very best chance of getting through it emotionally and spiritually. I’m a big fan of distraction and with chemo you’re not allowed out in the sun and I figured I’d be pretty crook but I thought I could sit inside and watch the pelican glide back and forth hunting for fish. Watch the ducks. They’re always a bit of fun. There was also the pure smooth serenity of the water not quite sitting still but gently flowing somewhere and the variations between high and low tides.

Being here gave me a huge, massive psychological edge versus being at home which has borne the brunt of 8 years of chronic illness, medical appointments and just plain discouragement. As much as I could have used this time to get the house sorted out. Decluttered and had the kids will organised for school, I needed to get as far away from all of that for my own well being as I could. I didn’t need to be immersed in problems. Crap and all the thing which needed to done while I’m trying to heal my body and mind. I needed to be kind to myself.

Unfortunately, the rest of the team hasn’t had that luxury. Geoff had last week off work and spent the week down here. He returned home Monday night to find that the fish tank had leaked on the carpet. He is still battling with the car which has had endless troubles over the last couple of months and stupid problems at that. The Christmas tree is still up with no sign of coming down and then there’s work. Meanwhile, my parents have the kids. My Mum’s not well. My brother’s not well. Dad is starting to notice rheumatoid arthritis moving into one of his fingers and it is rapidly starting to twist. Dad is running his own business while helping to watch the kids. Yesterday, Mum had some pre-schedule dentist appointment so Dad had the kids and he took Miss off to the dentist because one of her baby teeth had fallen out some time ago and there was no sign of the adult tooth. I found it hard to believe that in the midst of my chemo treatment that we’d find out that Amelia was missing a tooth but that is a bit of a family thing. Fortunately, that was fine. It is just taking its time and Amelia was proudly showing off the dental floss she’d been given.

I have to admit that I don’t think the rest of the team was thrilled when I mentioned that I’d had a healing massage and had been watching the waves. Talk about luxury self indulgence!

This just goes to show that there is quite a difference between what the person experiencing the problem goes through and the experiences of the support crew. It is like the duck. I am gliding almost effortlessly along the surface while the rest of the family are my feet madly paddling trying to keep me afloat. They are literally busting a gut so I can rest, relax, recuperate and take it easy. Now, I haven’t exactly been doing nothing and I am actually hoping that my writing will translate into some kind of income that can also keep our family afloat. As much as all this writing is cathartic, stimulating and fun, I do also view it as my job. The best chance I have of trying to earn a living. That’s right…a living not a dying!!

I am also making a mental note to self that the support crew needs a break and that we need to bring in the support crew for the support crew once we get home.

This list should be set up as more of a mind map than a numbered list. All of these factors are important.

Talking about the support crew, reminds me of the importance of the support crew. I would be dead on my own. No doubt about it!! I have had a GP who has seen me through this process and it really has been a difficult process for her. Rare diseases aren’t easy and everybody prefers to be in their comfort zones. Know what it is. Know what they’re doing. Rare disease aren’t like that. There is little precedent. It’s mostly unknown. She bends over backwards to help me and we often have a laugh despite my circumstances. She wants to be played by Kate Blanchett when my book finally becomes a movie. There is my wonderful specialist who has always taken an interest in my disease. He brought his students round to see me and he is fighting tooth and nail to give my kids their Mum. I only know both my specialists in a very small realm but I know they are good person and they would do whatever they can to save my life. We might and no doubt one day will ultimately lose the battle but they have given their all and then some. In addition to these medical people and my family which I’ve mentioned, I’ve had countless people pray for me and I’ve talked the ears off a few hospital chaplains and one of my dear Pastor who isn’t well himself right now. I have wonderful friends who have picked up the kids, cooked meals and listened. I have been incredibly blessed but at the same time, I still try to give. I don’t have a monopoly on adversary and back luck. Everybody has their cross to bear.

Distraction, otherwise known as “keeping busy” is also a wonderful thing. During this chemo experience, I have had various little projects. There has been my “teach the kids how to cook” project which has also turned into a real cooking expedition for me as I’ve extended my cooking beyond my usual chicken schnitzel and roast lamb. I’ve really been enjoying my weekly serve of Atlantic Salmon. It has also been an eye-opener to see the kids struggling with the grater and the peeler and realise that cooking is also building up their fine motor skills and confidence. Searching for recipes etc and putting my energy into this project certainly helped distract me from my treatment and whether I was going to live or die. It gave me a sense of purpose. I should have mentioned this sooner that the cooking project also brought the kids and I closer together and it was fabulous to not only spend time together but have this as a joint project. They both seem to enjoy cooking and largely embraced it.

While I have ignored my violin a bit while I’ve been here, I have actually kept up my piano practice and Fur Elise is progressing well. It has been very positive to put my energy into my practice and slowly but steadily notice significant improvement. Only two weeks ago, I was bumbling through the start of Moonlight Sonata and couldn’t play C major scale with hands together. My hands weren’t in synch and it took a couple of goes to get it right. That’s pretty humbling when you learned the piano for over ten years and while I know I haven’t practiced and virtually haven’t touched a piano in ten years and have maybe even avoided the piano entirely…shunned it…I never expected that I couldn’t play at all. That rusty would become rusted.

It’s been very therapeutic to tackle Fur Elise and through doing this daily practice, actually feeling that I can play the piano.

Mum has now actually suggested that I learn to play Chopin’s Revolutionary Attitude. I had to have a bit of a laugh at this because suddenly I’ve gone from struggling to play C Major Scale which is very definitely in the “elementary my dear Watson” category to being told I can take on a concert piece. It sounded crazy to me but there has been a precedent. Mum reminded me that as much as I don’t like to think of myself as a chip off the old block ie my Dad that Moonlight Sonata and Fur Elise are also his pieces. Not long after Mum and Dad were married, Dad apparently decided to teach himself how to play Chopin’s Revolutionary Attitude while his mother was away overseas and there was a big dinner and recital in their flat on her return.

If Dad can do it, I can do it!!

Another adventure begins. I hope Beethoven doesn’t mind. We have been what you’d call “exclusive” for quite some time.

You could also rebadge these distractions and call them goals…a sense of purpose…something to live for. Naturally, I have my kids and family, friends to live for but I also need something beyond that. Something that extends my skills and challenges me. Not that the kids aren’t challenging but even as a mother who is potentially dying and leaving her kids, I still need my own world…my own life and to extend and maintain my self and my own space and identity just like most other  women. I just can  not live and breathe for my kids especially as I may not die young at all and I still need to plan ahead and have a life…not just a death!

I’ve had various goals which have sustained me. Most notably, there was my goal to ski down Perisher’s front Valley which I pulled off last year. I did my preliminary violin exam and achieved my A. I’ve worked part-time and done the publicity for the school. I have also poured myself into the children and tried to help them reach their potential often in opposition to themselves. Goals are vitally important for maintaining that sense of purpose which helps get you over life’s speed humps and even steep mountains and doesn’t let you get bogged down in the mud.

Humour is an essential survival strategy. It is quite a common approach for someone going through severe adversity to turn it into a joke and laugh about their predicament…just like my chemo for Christmas. “All I want for Christmas is my chemo” I pictured a little girl singing all I want for Christmas is my two front teeth with her cute gappy smile and there I was not so small and cute wanting chemo.

Somehow you need to control the bad thoughts. My psychologist introduced me to the wonderful word: “catastrophising”. This is where you turn your bad news into a catastrophy of world-ending proportions like pumping up a balloon with hot air…off it goes. You setback has become a disaster. You’ll going to die. We’re all going to die. The entire planet is doomed!!!

Instead, you have to stop. Take a few deep breaths and consider things from a more realistic perspective. Is this situation really as hopeless as it seems? What, if anything, can I do to make things better? How likely is the worst case scenario? I am slowly getting better at this but it is a learned skill like anything else.

A problem shared is a problem halved. Talking things over with a friend really helps and keeping a journal is a great way of doing this as well particularly if you want to keep things private. Sharing a problem may not mean talking either. It might involve practical help. You don’t have to go it alone.

I just thought of this one but solving the problem is actually the best way out of any crisis. Now, my medical situation is more complicated but for others just getting on with it and not procrastinating is possible.

I should point out that while I’ve been tranquilly staring out to sea on one side of the house, the neighbours across the road have decided that my day of tranquillity the very last day before I have my last chemo treatment is the day that they whip out the chainsaw and atone for years of garden neglect. This is the only day this summer that the cicadas have been quiet and now the chainsaws are going. You’d have to agree that’s a bit odd. I just wandered out there in my pyjamas to give them one of those “I’m a %$@#  shift worker. Stop the noise” glance. I would dearly love to go up to them and not so subtly point out that I am currently undergoing chemo and could you please keep the noise down. Oh my goodness that chainsaw is loud. If you have ever complained about cicadas, think again. These things are absolute beasts.

At the same time, that house across the road has been considerably overgrown. After I recovered from the pneumonia, I made a few jokes about what it was really like when Sleeping Beauty woke up. There had been an elderly couple there and the husband died after a long illness. It really did look like the place was returning to nature as the branches enfolded the house. Suppose it will be good for the street to get the place sorted but why did it have to do it today? Right now when I desperately need a nap. I didn’t sleep too well last night and I’m sagging badly falling head first into my laptop.

This sort of noise is one of the downsides of community…the cost.

I haven’t exactly finished this post as such but wanted to get it up today before I get my results and also before I have my last hit of chemo. It still needs work but I wanted to get it up.

xx Rowena