Tag Archives: Muscular Dystrophy

“The Dog House”…Our Response to the Coronavirus.

Today, my husband and I went and bought a pop-top caravan with a longer term vision of road trips. However, the reality is that we’ve bought the caravan to protect me from catching the coronavirus from the family. We bought something small and cheap which will fit in the backyard alongside the boats, and it needs a lot of work. However, at the end of the day, we’ll have something which is our own and almost becomes a member of the family. We’ve decided to call it: “The Dog House”. That’s not only because it will be parked out in the backyard with the dogs. As you may be aware, “being in the dog house” is when a bloke is in trouble with his wife and he might be sleeping on the couch but the saying is that “he’s out in the dog house”.

For those of you who have been following Beyond the Flow for some time, you’ll be aware that I live with a severe auto-immune disease, Dermatomyositits  which attacks my muscles and that as a complication of this, I’ve developed Insitital Lung disease with fibrosis in my lungs. I live with 50% lung capacity on a good day, and I also know what it’s like trying to get through a really bad day. A few years ago, I caught pneumonia and stopped breathing for a split-second. I was coughing and coughing and coughing and suddenly there was nothing. Fortunately, something popped and cleared my lungs and I was still alive. It took months for me to get out of danger and my lung specialist bluntly told me that if I caught anything else, I’d be finished. This pneumonia also triggered a flare of my auto-immune disease. So, I also ended up having chemo to halt that. So, you see, I have a pretty good idea of what it could be like to catch the coronavirus and what it would mean for me and our family…or the extended community. This is not something to treat with our usual Australian indifference. The “she’ll be right mate” attitude. Some of us will be right. Some us us will still be here but with scarred and damaged lungs, and others will be gone, especially if we as a community don’t take transmission seriously and self-isolate as much as we can. That said, I haven’t completely quarantined myself yet. Not knowing how long this thing could hang around for, I am being very selective.

I also wanted to share a Facebook post from one of my dear Muscular Dystrophy friends, Cassie who is in her 20s. I won’t say much about her except to say she’s stretched and extended herself well beyond her disability and conquered so many hurdles. Then, something like this virus comes along, and it isn’t about fear or anxiety. The threat is real. Anyway, here’s what she had to say:

“I haven’t said much about this covid-19 but here is my piece to everyone that may be belittling it or panic buying and hoarding.
This is more than a common cold. sure some minor corona virus’ cause the common cold but this is worst than the flu. Those people panicking, filling up hospital beds and hoarding supplies, you are being totally unfair on everyone else who still needs those products too.
So many people I know, including myself are vulnerable to death from this virus. Surely by knowing me you would realise our lives are worth more than such flippant and infuriating (to me) statements that ”it is just like a common cold” or ”it won’t effect me”. By saying it is not that big of a deal stops people taking infection control seriously resulting in people like me dying. ask yourself how many people do you know with emphysema, copd, asthma, heart disease, weakens immune systems, cystic fibrosis, muscular dystrophy and many other conditions? how would you feel if you potentially carried covid-19 to then they died? just because ”the old and weak” as society deems us often die with any spreadable disease doesn’t mean we shouldn’t be taking this seriously and taking measures to protect EVERYONE. MY LIFE MATTERS TOO AND I DON’T WANT TO DIE!!!”

You’d have to be made of stone if these words didn’t strike you like an arrow through the heart. It’s also a wake-up call to people who aren’t taking this seriously. Do you want to be the one who passes the virus onto someone else who then goes on to die? If we’ve taken the best precautions, then we don’t have a case to answer for. However, if we’ve stuck our head in the sand, then we’re accountable. There have been pure bred idiots who have gone to the supermarket on the way home after being told to self-isolate because they’ve been exposed to the virus. OMG!

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Here I am helping my daughter with her audition for the Andrew Lloyd Webber production of the Sound of Music in Sydney. I had a nasty chest infection and was on the nebuliser but did manage to go with her to the audition.

Anyway, I wanted to share this this with you. Let you inside the world Cassie and I share with so many people who have lung and other medical conditions so you can walk in our shoes for a bit. Breathing in through our lungs, and know what it means to struggle for every breath. I would do anything to stop someone from getting this thing. Like Cassie, I am also determined to stay alive. This should be a no-brainer, but more caution is needed.

Jonathon mask

My son and I making Irish Stew when he had a cold quite a few years ago now.

Please be cautious. Please be kind.

Best wishes,

Rowena

Our Tenacious Little Dancer.

“I think she is growing up, and so begins to dream dreams, and have hopes and fears and fidgets, without knowing why or being able to explain them.”

Louisa May Alcott

Today, our beautiful daughter suddenly grew a couple of inches taller when she stepped into her very first pair of pointe shoes and she was up en pointe. This has been something she’s been aspiring towards ever since she first started ballet as an almost four year old eight years ago. Indeed, I remember a time when she was very small and she stood in a couple of plastic cups to get the look (and a bit of added altitude). In hindsight, I probably should’ve got those cups off her feet and been more safety conscious. However, she was so happy, and it was too good a photo opportunity to miss.

In typical Rowena fashion, this pointe shoe fitting demanded a bit of pomp and ceremony. Indeed, quite frankly if she wasn’t twelve years old, I would’ve popped the  champagne, even though I’m not that partial to the taste. Even as a child, I was mesmerized by the theatre of it all what with popping the cork and all those bubbles shooting out like stars across the room with unbridled joie de vivre. Bubbly encapsulates the excitement, the celebration the exquisite preciousness of the moment in a way that nothing else does. You don’t even need to drink the stuff.

However, instead of a champagne celebration, we met up with my Mum for lunch and coffee and then the three of us headed off to Bloch’s for her 3.00pm appointment. By the way, our daughter wasn’t the only young dancer who had to get that very special pair of first pointe shoes on the very first day of the school holidays. The fitter had been flat out all day and we were something like her 11th fitting. Yet, she seemed just as excited for my daughter and for us as the first. As a dancer herself, she knew what this moment was about and really helped to make it special and informative. If there’s one thing I now know about pointe shoes, it’s not to get them wet. I also confess that I’ve also seen my daughter’s feet in a new light.

Helping en pointe BW

We really appreciated the care and assistance we received at Bloch’s Hornsby with the shoe fitting. Naturally, the staff are dancers themselves and I felt that our fitter was handing down the mantle to our daughter. They actually gave her a certificate. She’d joined the club.

Our daughter has been learning ballet for eight years now and she’s worked very hard for the last 12 months doing all sorts of stretches to prepare her feet and toes. Indeed, she needed to have a physio consultation before she could go for her pointe shoe fitting. By that stage, her teacher already knew she was ready. However, she likes her students and a parent to be aware of the physicality of ballet and how the muscles bones and other bits and pieces come together to to produce your swan. Through being more conscious of this physical element and looking after your body, dancers can help prevent injury, wear and tear. Given the difficulties I have with movement, I have appreciated these physical realities through a different window, which has given me an insight into the physical demands of dancing. That it isn’t only about costumes, makeup and hair. After all, injury and being on the sidelines is not just an inconvenience for a dancer. It can mean The End, or simply the end of  dance as they know it. When dance is your passion and raison d’etre, that can feel like surviving your own death. (I’ve gone through that with my own battles.)

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There was so much to learn at her fitting and you can see here that Miss is very focused taking it all in. She hasn’t been swept away by the excitement of it all.

For every young dancer along with her birth and dance families, getting their first pointe shoes is rightly an incredible achievement and time for celebration. While you might see those beautiful pink satin pointe shoes and immediately think of the likes of Degas and his dancers and the professional stage, these young girls are still within cooeee of being the “awkward duckling” who started out. There were no guarantees back then and for us, there were  certainly no expectations. I just dropped her off for her first class and the mysteries of dance went on behind closed doors until open days or the concert. From where I sat, ballet was just a part of childhood for a little girl. A bit of fun. An activity. It had nothing to do with my dreams, unless it came to taking her photo. Now, that was something I understood.

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Edgar Degas, The Little Dancer. She reminded me of my daughter until I found out she was quite distorted.

Although I wasn’t so conscious of this at the time, seeing Miss in her pointe shoes really brought home what we’ve all been through to get her there. I don’t think anybody’s road is easy, but everybody’s road is unique with their own particular reasons why getting into those pointe shoes is a personal miracle and a triumph over adversity. Most of you will be aware that I live with a life-threatening auto-immune disease which affects my muscles and lungs. However, Miss has a rare digestive disorder called gastroparesis, which particularly flared up a few years ago and she was barely able to eat. Indeed, she was struggling to get to school or to ballet and she missed months of classes.

Amelia at the san

Miss in hospital waiting for her endoscopy. So brave but she also loved having her own remote control TV!!

As you could imagine, it was very difficult to know quite how to manage the situation. We were very concerned about her actual health and it would’ve been quite a logical decision to cut out dance to focus on her schoolwork. Yet, we’re fighters. We might be holding onto the cliff face by our fingertips and kicking and screaming, but we don’t give up. Indeed, it was only after missing a couple of terms and feeling like all my motivational strength had run out, that I truly started thinking it was time to pull the pin. Her teacher was also very patient. However, dancing is a team sport and it’s hard to manage a team on three legs. So, with the end of year concert rapidly approaching, it was crunch time. As a possible way forward, her teacher suggested that her friend came over and they practice the dance together. I’m so thankful because her friend saved the day. That was the turning point. She picked up the dance. Was in the concert and was back on her dance feet again. Then, the following year, she had a friend at her new school who was a passionate dancer and she also a tremendous encouragement. By the end of that year, Miss decided to audition for Dance Team at the studio and was accepted. She hasn’t looked back and with the incredible training and support from her teachers, is growing from strength to strength. Clearly, with all these dance angels working flat out with her on multiple fronts, our daughter must’ve been destined to get up on those pointe shoes today. It’s been a real team effort.

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Afternoon Tea.

By the way, while we’re talking about life lessons from the road, organization has been another hurdle. While other girls have managed to get to class with a perfect ballet bun and all components of their uniform, all too often Miss could only find one ballet shoe and her ballet bun could well have been reinterpreted as a bird nest of its own unique variety thanks to her superfine hair, where getting the knots out produced spine-chilling screams. Yet, somehow or another, all of this has mostly become a thing of the past.

After explaining some of the hurdles we’ve had to overcome, perhaps you’ll understand why I thought this moment might never come and the tears of joy I held back while we were there as I felt like the happiest Mum alive. Back when our daughter was struggling, I remember seeing a group of older girls who’d just got their first pair of pointe shoes. They were exuberant and clearly this meant the world to them not only as individuals, but as a group. I felt so privileged to catch a glimpse through this keyhole and get an insight into just how important this moment is to a young dancer and what it would mean to my girl. Whatever happened with my daughter and dance, I wanted her to hang in there at least until she’d gone en pointe and  been a part of that bubble. Not for me, but for herself. I could could sense something in her soul, which is becoming more apparent with every passing year. Dancing is her thing. It isn’t her only thing but it lights her fire.

So, now we find ourselves at a new beginning. Once she goes en pointe, she has to learn to dance all over again. Although it is tempting to try to fast forward and think about where all of this is heading, he’s only 12 years old. The world is her oyster and there are still so many forks in the road. She doesn’t need to choose one yet. However, it can be difficult to maintain a balance and keep an open mind when you fall in love with such an alluring juggernaut that you could easily sell your soul to dance in ballet’s fire. Somehow, we just need to keep a level head and maintain a balanced path…at least for now.

After the fitting, she went to stay with my parents for the week taking her beloved pointe shoes with her. If they weren’t so precious, it wouldn’t surprise me if she slept with them under her pillow or close to her heart. They meant the world to her and I’m so proud of her for all she’s overcome, her hard work, dedication and most of all her passion for dance. I am also very grateful to all the people who have helped her along the way, her teachers, my parents but also very much her friends who have been so supportive and encouraging and that’s not something you hear much about in the dance world. She has some incredible dancing mates.

That is also why I am sharing our journey via the road less travelled for our daughter to get her pointe shoes.  That parenting isn’t all about bragging rights and showing off about your kids’ talents. It’s also about sharing about the hurdles and difficulties so other girls don’t give up along the way because they feel they don’t measure up. Aren’t good enough without giving it all they’ve got. I belong to the Muscular Dystrophy community and not everyone can get up on pointe shoes or dance in a conventional sense. However, that doesn’t have to stop you from finding a way. Indeed, I’ve done some adult classes myself and have my own pair of pink satin ballet shoes. I think it helps to understand that you’re not the only one who might be going through difficulties and wondering whether to persevere with dance or whether it’s all worth it. No one else can answer that on your behalf. However, we are meant to encourage each other and dance is such an exhilarating experience. It’s worth fighting for.

Do you have any dance stories you would like to share? Or, a story of triumphing over adversity? I’d love to hear from you.

Best wishes,

Rowena

PS I have a strange sense of humour. However, after hearing about how her pointe shoes have paper mache in the toes and are very sensitive to moisture, including sweaty feet, I found I found a great deal of humour in this quote:

“Growing up, I had only one good pair of shoes. So on rainy school days, my mom would slip plastic bread bags over them to keep them dry. But I was never embarrassed. Because the school bus would be filled with rows and rows of young Iowans with bread bags slipped over their feet”
Joni Ernst

So, if you see a dancer with plastic bread bags over er pointe shoes, you’ll know that’s our daughter!

A Weekend in Parramatta, Sydney.

Last weekend, my husband and I went to Parramatta for the weekend. In many ways, it was quite an unlikely place for us to go for the weekend, as it’s not exactly known as a tourist Mecca. However, I’m really glad we had the chance to explore this part of Sydney for the first time in any kind of depth. By the way, the reason we were staying in Parramatta, was that we were on a couple’s retreat hosted by Muscular Dystrophy NSW, which helps support my various “idiocyncracies”, as I’ve now  refer to them.

It is hard to quite known how to adequately describe Parramatta. Indeed, it’s hard to to encapsulate any place in a few words, or a handful of photographs. Yet, it’s seems that travellers, those of us who are only passing through, always feel the need to try, at least on the back of a postcard.

If I had to summarise Parramatta on the back of a postcard, I’d start of with a brief history lesson.

Parramatta was founded in 1788, the same year that the First Fleet arrived in Sydney. The British settlement desperately needed food and was struggling to find fertile soil in Sydney Cove.  During 1788, Governor Arthur Phillip had reconnoitred several places before choosing Parramatta as the most likely place for a successful large farm. Parramatta was the furthest navigable point inland on the Parramatta River (i.e. furthest from the thin, sandy coastal soil) and also the point at which the river became freshwater and therefore useful for farming. Although initially called Rose Hill, On 4 June 1791 Phillip changed the name of the township to Parramatta, approximating the term used by the local Aboriginal people.[19]

 

In 1789,Phillip granted a convict named, James Ruse, the land of Experiment Farm at Parramatta on the condition that he develop a viable agriculture. There, Ruse became the first person to successfully grow grain in Australia. The Parramatta area was also the site of John Macarthur’s Elizabeth Farm, which had pioneered the Australian wool industry by  in the 1790s. Philip Gidley King’s account of his visit to Parramatta on 9 April 1790 is one of the earliest descriptions of the area. Walking four miles with Governor Phillip to Prospect, he saw undulating grassland interspersed with magnificent trees and a great number of kangaroos and emus.

In years gone by, the story of Parramatta would’ve been a white man’s story. Indeed, when I was at school, we learned nothing about the frontier wars between Europeans and the indigenous Aboriginal people. It’s only now, that I’ve heard about the Battle of Parramatta, a major battle of the Hawkesbury and Nepean Wars, which occurred in March 1797 where resistance leader Pemulwuy led a group of Bidjigal warriors, estimated to be at least 100, in an attack on a government farm at Toongabbie, challenging the British Army to fight.Governor Arthur Phillip built a small house for himself on the hill of The Crescent. In 1799 this was replaced by a larger residence which, substantially improved by Governor Lachlan Macquarie from 1815 to 1818, which is now referred to as Old Government House.

Above: St John’s Church

So, having given you a brief historical snapshot, how about you join me at Parramatta Station. After such a long trip, I just had to stop for refreshments at the Guylian Cafe, where I had a heavenly chocolate dessert and a cappuccino. From there, I walked across to Church Street. On the left, there’s historic St John’s Anglican Church and across the road, you’ll find Parramatta Town Hall, which reminds me of a two-tier wedding cake. Next to the Town Hall, the future of Parramatta is starting to rise out of what has often been hard times. Indeed, throughout our walks around the Parramatta CBD, new buildings and construction sights resemble alien intruders. Next to the Town Hall, we spotted the Bourke Street Bakery, where we had an unforgettable Raspberry Cream Meringue Tart. That’s when we spotted the captivating water fountain, and I’ve just found out this whole area is now called Centenary Square. There’s a ping pong table, large outdoor chess set and on Sunday night, we even spotted a group doing salsa outside together. So, there really are moves afoot to give Parramatta not only a facelift, but also a strong community feel and a heart.

This leads me into a dynamic thriving food area further up Church Street, known as “Eat Street”. Personally, I found this area had a sort of bazaar feel about it with restaurants and street food all sandwiched together to a point that you’re almost not sure where your chair or table belongs at times. There are street vendors, restaurants from a smattering of cultures…Italian, Greek, Lebanese, Thai, Mexican, Cuban. The choices were dazzling and in the end we went to a burger place my husband had been to near work and I had a pork belly burger. We went to a chocolate cafe for dessert. Yum.

Above: I spotted these in the Army Disposal Store.

Moving further Church Street towards Phillip Street, the buildings looked rather old and sad to be honest. There’s old and historic, but quick cheap and nasty construction only gets worse with age. However, that’s not to say that the shops didn’t have character and appeal. Indeed, we found an army surplus store, which in itself is a rare breed these days, but this one also had loads of personality, and there was even a chandelier when you walked in. I also found Tom Cruise and the Terminator on the wall 80s style. In terms of interesting places, I should also point out the Bavarian Bier Cafe, which is housed inside an historic Church. We had planned to have dinner there on Saturday night, but couldn’t get a table.

Above: The German Bier Cafe.

We stayed at the Parkroyal Hotel on Phillip Street, and really enjoyed our stay. As I said, we were staying there with other couples from Muscular Dystrophy NSW. We met up together in the foyer and had a beautiful dinner in the hotel restaurant together on Friday night. I think I only knew one person well beforehand, but by the end of the weekend, we were one big happy and well-fed family and exchanging email addresses and contacts. It really felt like such a blessing to all get together, but it was also great that the weekend away also provided for time for Geoff and I to be on our own. We have really been quite desperate to spend any time to actually focus on each other and take care of each other, without trying to spread ourselves four ways, or even further if the dogs or work are also demanding attention. We are by no means alone in this and I’m very grateful to Muscular Dystrophy NSW for organizing the retreat, my parents for taking the kids and a friend for minding the dogs and the home front.

In my next post, we will visit Elizabeth Farm and Old Government House.

Have you ever been to Parramatta? What are your thoughts about it?

Best wishes,

Rowena

W- Andrew Newell Wyeth: Letters to Dead Artists…A-Z Challenge.

Welcome to my series of Letters to a Dead Artists, which I’ve put together for the 2018 Blogging A-Z April Challenge. For the past month, I’ve been steadily moving through the alphabet and after writing to Leonardo Da Vinci yesterday, today I’ll be writing to Andrew Newell Wyeth, an American realist painter.The music I have chosen to accompany Andrew Wyeth is Celtic Woman singing You Raise Me Up

Wyeth was born on July 12, 1917 in Chadds Ford, Pennsylvania, and passed away at the age of 91 on January 16, 2009…a very long way from Sydney, Australia.

“I prefer winter and fall, when you feel the bone structure of the landscape – the loneliness of it, the dead feeling of winter. Something waits beneath it, the whole story doesn’t show.”

Andrew Newell Wyeth

Prior to setting out on this challenge, I had never heard of Andrew Newell Wyeth, and to be perfectly honest, I only found out about him on a Google search trying to fill up the vacant letters. It’s a problem I face every year, where I’m forced to leave something out because certain letters are bombarded with choice, and I’m left desperately scrambling to find anything for others. However, my criterion for choosing every single one of these artists, whether I knew them before, or whether  they popped up in the Great Google Lucky Dip, was that I needed to experience some kind of emotional, psychological and even spiritual connection. It couldn’t just be a case of: “She’ll be right mate”, or any artist will do.

As it turned out, Andrew Newell Wyeth’s iconic painting Christina’s World (1948), grabbed me by the throat and almost stopped me dead. This artist I had never ever heard of before, had never met, and lived on the other side of the world, had miraculously captured my suppressed, desperate, clawing frustration of battling against the muscle weakness brought on by dermatomyositis.

“To be interested solely in technique would be a very superficial thing to me. If I have an emotion, before I die, that’s deeper than any emotion that I’ve ever had, then I will paint a more powerful picture that will have nothing to do with just technique, but will go beyond it.”

Andrew Wyeth

When I first saw the house on top of the hill, and Christina groping her way up through the grass, I could feel her struggle in my own body. Yet, it didn’t occur to me straight away that Christina also had some form of muscle loss. Rather, I thought the painting simply portrayed human struggle, and that clawing desperation to make it up the top of the hill. Indeed, I felt a sort of chill or goose bumps, as soon as I saw the painting. There was that instant recognition of myself, and of course, it helped that I also have long dark hair and there could well have been quite a likeness once upon a time. Of course, it helps that he painted her with her back to the world and we can’t see her face.

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Andrew Wyeth, Christina Olden 1947

Indeed, seeing Christina’s World, I was swept into a horrific vortex of memory, reliving when I simply tripped over a broom at home.  Much to my surprise, I was literally swept into a blood-chilling nightmare, when I couldn’t get myself up again.

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How the camera lies. An everyday photo of Mum and kids, except I was in Mt Wilga Rehbilitation Hospital and could barely walk or get myself up off the ground. That was just over ten years ago.

There I was a 36 year old Mum home alone with my two young kids. Mister was about three and a half and at an age where, like a scene out of Dead Poet’s Society, he’d climb up onto our back shed to get a better look at the “mountains”. He was somewhere when I fell, which usually meant mischief, danger or a combination of the two. Meanwhile, Miss was only 16 months old, and Mummy’s little shadow. However, that also meant that when I fell, I knocked her over on the way down. She was crying and this was no ordinary cry either but had that same chilling sensation of fingernails scraping down a chalkboard, which travels right under your skin. Of course, I’d normally pick her straight up. Comfort her. Kiss it better. However, I was weighed down like a sack of lead potatoes, and couldn’t move at all to reach her and just had her cry in my ear.

Instead, there I was lying face down on the tiles and couldn’t get up. Moreover, at this point of time, I didn’t have a name for the horrific monster which had invaded my body and my bloodstream. Not having a diagnosis, in a way, meant that it didn’t exist and that I was just “tired”. It was just part of being a Mum with very young kids… having a baby. Sleep deprivation and utter exhaustion are par for the course, aren’t they? However, this was different…something nasty, sinister, a monster.  While I hurt my knee in the fall, why couldn’t I get up? For somebody with normal mobility, this was so surreal and strange. Quite unlike the sort of panic that comes, when you can’t feel your legs. As far as I was concerned, there was no reason I couldn’t get up. I was just tired, rundown although there was something funny going on with my blood tests. Eventually, I was able to lift myself onto my bottom and I shuffled into the kitchen. For once, the cordless phone was there when I needed it and I rang my husband who was at work a two hour train trip away. Clearly, he couldn’t just pop home and magically save the day. Meanwhile, my call filled him with a sense of dread, absolute powerlessness and horror. Clearly I was very unwell and needed immediate help, and he couldn’t do a thing. In fact, I don’t think either of us even considered calling an ambulance. That was for emergencies and I’d just simply fallen over…

All he could suggest was levering myself up with a chair and that worked. It took a further six weeks for me to finally receive a diagnosis and then I was in a combination of hospital and rehab for about 8 weeks.

“There’s a quote from Hamlet that is my guide… He tells the players not to exaggerate but to hold a mirror up to nature. Don’t overdo it, don’t underdo it. Do it just on the line.”

Andrew Wyeth

So, while it was sensational to find Christina’s World and to see my struggles depicted and represented on canvas, there was also an enormous sense of sadness. You see, like Christina, despite pushing myself beyond breaking point so many, many times, I still haven’t made it to the top of the hill. I haven’t made it home. Not only am I adrift, but there’s also that intense frustration better known as angst where I can see where I want to go. Where I’m meant to be. Yet, I’m constantly clawing through the mud and getting nowhere.

“I do an awful lot of thinking and dreaming about things in the past and the future-the timelessness of the rocks and the hills-all the people who have existed there. I prefer winter and fall, when you feel the bone structure of the landscape-the loneliness of it, the dead feeling of winter. Something waits beneath it, the whole story doesn’t show.”

Andrew Wyeth

Yet, ironically there is also great strength in persevering through weakness. Indeed, there’s that old adage: “what doesn’t kill us, makes us stronger”. That’s so true and these days they’ve even called this fighting comeback…resilience. Indeed, resilience is now considered one of the key ingredients for getting through life. So, for those of us who received more than their allocated glass and a half, we must be powering all the way to the moon. Well, if only we could make up that darn hill.

By the way, after spilling my guts about how Christina’s World touched me so personally, I had to laugh as these prophetic words of Andrew Wyeth’s:

“I get letters from people about my work. The thing that pleases me most is that my work touches their feelings. In fact, they don’t talk about the paintings. They end up telling me the story of their life or how their father died.”

Andrew Wyeth

I guess it’s not surprising that Wyatt knew and had experience intensive suffering and loss himself. In 1945, Wyeth’s father and his three-year-old nephew were killed near their home, when his car stalled on railroad tracks and was struck by a train. Wyeth has often referred to his father’s death as a formative emotional event in his artistic career. Shortly following the tragedy, Wyeth’s art consolidated into his mature and enduring style, characterized by a subdued colour palette, highly realistic renderings, and the depiction of emotionally charged symbolic objects[1].

Christina’s World was painted a year after his father’s death.

Although this introduction is very rushed and feeling incomplete and inadequate, I’m going to get moving and start writing my letter to Andrew Wyeth.

A Letter to Andrew Wyeth

Dear Andrew,

For the last month, I’ve been trying on the shoes of so many artists and tried to see the world through their eyes, before I take a huge, audacious step and actually write them a letter. As much as it’s been a lot of fun in a heavy research searching for the meaning of life kind of way, it’s also been very challenging, especially as it seems that almost every artist without exception, has experience incredible suffering. I don’t know whether it’s this understanding and empathy with suffering, which has given their paintings added depth and emotional insight, but there’s definitely that common thread.

Do you think artists suffer more than others, and their grief inspires their art? Or, does their art become more of an antidote, a way of releasing the anguish trapped inside?

I have asked God myself why there’s so much suffering, especially at one point where I felt he’d channelled centuries of wrath in my direction and afflicted me with the dermatomyositis. However, ever faithful, he replied and said: “if it’s good enough for me, it’s good enough for you.” I didn’t challenge him on that front again. He’d made his point.

Anyway, I’d like to thank you for giving us Christina’s World. While everybody who sees the painting could well have their own interpretation, her story obviously has a very personal connection for me. Trying to get up hills is particularly hard for me these days. Not so much due to the muscle weakness but due to the associated problems I have with my lungs, which are currently not much over 50% capacity. I don’t know why I’m telling you all this, but you seem like the sort of people I could simply talk to. That you care. That no one’s experiences or struggles are too small or insignificant. Each of us matters.

Before I head off, I’ve enclosed some leftover egg yolks, which I thought you could use to make up your tempura paint. I made a pavlova yesterday and I hate wasting the left over yolks. By the way, I’ve attached my recipe for Betsy. I understand she made a lot of meringues in her time.

Best wishes,

Rowena

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Andrew Wyeth: Wind From the Sea.

A Letter From Andrew Wyeth

Dear Rowena,

Thank you so much for your letter and the egg yolks. I’ve already started on a painting. This one depicts Andy Warhol’s reaction when I received your letter and he missed out. Dad, ever out to compete and do things bigger, bolder, brighter has splashed oils all over the biggest canvas in stock. Mine is more subdued, but you’ll have to wait.

I was rather taken aback to read that you have lung troubles, my friend. You see, I had lung troubles from a very young age and even had one of my lungs removed and the other one wasn’t that good either. So, I was living on less than half a tank never expecting to grow up, make it through middle age and it was the most confusing things after being so terribly ill, to actually see most of my friends pass away before me like Autumn leaves.

So, my friend, there is hope for you yet.

Sorry, I forgot to thank you for the Pavlova recipe. Betsy loved it and everyone’s grateful for a change to meringues!

Best wishes,

Andrew.

By the way, I highly recommend Dan Schneider’s Video interview with three experts on Andrew Wyeth:

 

[1] http://www.u-s-history.com/pages/h3707.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3374451/

https://curiator.com/art/andrew-wyeth/trodden-weed

 

A Spectacular Performance -Weekend Coffee Share: November 29.

This week, you’re invited on a virtual cafe crawl as we catch the train from Woy Woy to Sydney. Have breakfast in Glebe then drive two hour’s North via the Sydney Harbour Bridge to the Hunter Valley and then back down to Parramatta in Western Sydney and back home again. I assure you with this grueling schedule, you will require every single coffee and no doubt a few nature stops along the way.

The last week has been truly incredible.

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Before we get onto my daughter’s performance at School Spectacular, I just wanted to touch on a bit of a shadow which hung over things last week.

You see, my daughter was concerned about being caught up in a terrorist attack while she was in Sydney. Of course, being a kid, she didn’t express her concerns so succinctly. She simply asked where she could buy herself her own armour after seeing Police with bullet-proof vests on TV. I had a chat with her about it all, advising her on a few things she could do if she was in an emergency, which I outlined in this post: https://beyondtheflow.wordpress.com/2015/11/25/a-conversation-no-parent-should-have/

I have to admit that even though I knew the chances of her getting caught up in a terrorist attack were very unlikely, there was that remote possibility and there’s definitely that sense that trouble’s brewing at the moment but we don’t have that crystal ball.

Anyway, off she went and on Friday morning, I caught the train down to Sydney with our son and the rest of the local kids. It was only a four carriage train and it was packed, mostly with kids. As we were about to head over the Hawkesbury River Bridge, the lady next to me turns to me and says: “The guy next to me asked me to mind his bags while he went to the toilet but he hasn’t come back and he’s been awhile. I’ve got to get off. I can’t remember what he looked like. He might have been tanned but what does a terrorist look like anyway?”

Now, let me just put you right into my shoes. Here I am on a train packed with school kids including my son, my friends’ kids, friends of friends kids and the teachers who are like family to me and suddenly I’m in charge of potentially deadly situation. I’ve heard the announcement countless times while waiting on train platforms. If you see unattended luggage, please report it to station staff. This was exactly what they were talking about. At the same time, I looked at the large bag of Christmas presents, all beautifully wrapped in Christmas paper, wondering how they could possibly blow anyone up? How could Christmas presents ever be considered dangerous, even deadly? I noticed the intercom for the guard nearby and gave him 10 minutes to return. I was hoping that he’d been eating plenty of fibre and it wasn’t going to be a legitimate (but very extended) call of nature and I’d just caused pointless stress.

This was a lot to take onboard, especially after my chat with my daughter. I certainly didn’t expect to be thrown in the dead end like this. It was all supposed to be over-active imagination and now I’d somehow become embroiled in a plot, which was way too big for this little black duck.

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Illustrator Sarah Davis

Of course, the fact that I’d been to a three hour writing workshop with Australian Illustrator, Sarah Davies the day before, didn’t do much to appease my imagination. Suddenly, I’d become the reluctant hero but what if I made a mistake? It was a huge responsibility!!

Fortunately, the man returned and calm was restored. I could get back to reading my book. I was in the Quiet Carriage while the kids were in what could only be described as “the loud carriages”.

This was the second false alarm I’ve had recently. You might recall that the day before the Paris attacks, we had four Army Black Hawk helicopters flying just above the rooftops of our quiet beach-side town. They were circling around doing lap after lap after lap and while I wasn’t thinking about terrorists, having a very dangerous criminal on the loose wasn’t desirable either. But…that was also a false alarm.

However, we made it to Sydney rather uneventfully in the end and I was able to meet up with Miss before her grand performance.

 

Miss Spectacular

Miss Spectacular

Our daughter performed with her school choir at School Spectacular, an absolutely huge extravaganza held at the Sydney Entertainment Centre. They were part of a huge mass choir, a sea of white shirts made up of 1500 kids singing 30 songs and doing actions. They did 4 performances over two days and had a pretty intensive rehearsal schedule as well. I am surprised any of them were still upright by the end.

Finale- School Spectacular, Sydney Entertainment Centre.

Finale- School Spectacular, Sydney Entertainment Centre.

As we live in Greater Sydney and about 90 minutes away, Miss ended up staying across the road for almost a week with her friend’s grandmother. They were staying nearby 53 levels above the ground with the most incredible views of Sydney. She was so blessed and having her there made things so much easier for me with juggling transport.

Here I am enjoying the view from where Miss was staying.

Here I am enjoying the view from where Miss was staying.

While Miss was living the high life, I booked Geoff and I into the cheapest accommodation I could find which wasn’t above a pub. It wasn’t too bad but when we checked it out on Google Earth, we did notice some kind of Chinese massage parlor next door and Mum did warn me to make sure Geoff didn’t disappear during the night. The place had a pretty dodgy metal fire escape out the back and while comfortable,could well have been the sort of place a fugitive would hide out. Needless to say, there were no views from our hotel room. Indeed, I’m not even sure there was a window.

Hotel Carpark.

Hotel Carpark.

Saturday morning, we headed off to Glebe for breakfast. We had intended to have breakfast at Glebe Markets, where I used to hang out several lifetimes ago but we couldn’t find parking and after weaving out way through a series of dead end and one way streets, we found ourselves sitting at the first cafe we could find on St Johns Road and refueled with coffees, an almond croissant and omelette.

Rebel Red Shoes.

Rebel Red Shoes.

I should also point out that I was wearing really dodgy shoes and could barely walk. After breaking my foot last December, I’ve virtually spent the year in joggers but as we were going to my cousin’s wedding, I just couldn’t resist wearing my fave red shoes. They have wedge heels and being flat on the bottom, I can sort of walk in them but it’s definitely a case of “Ricketty Ro” and much of the time, I have to hold onto Geoff’s arm for dear life.

While I have nothing approaching a shoe fetish and wear sensible shoes almost all the time, sometimes I just want to step out there and feel a bit pretty, elegant, frivolous and NOT a matron or person living with  disability. Be myself. If you haven’t worked out the obvious by now. I am not a sensible person so why should I wear sensible shoes?

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Driving Across the Sydney Harbour Bridge.

 

Moving right along, we’re having our next coffee in Kurri Kurri in the Hunter Valley. Kurri Kurri is a coal-mining town on the gateway into the Hunter Valley, one of Australia’s most famous wine-producing regions. Like many regional towns looking to put themselves on the tourist map, the town has rebadged itself as “The Town of Murals”. Fifty murals, each with a hidden kookaburra, have been painted around town: http://www.kurrikurri.com/kurri-kurri-murals-project/

More Coffee...Kurri Kurri Tourist Information Centre.

More Coffee…Kurri Kurri Tourist Information Centre.

After over compensating for Sydney traffic congestion, we arrived at Kurri Kurri 2 hours before the wedding. Needing another caffeine hit (make that a strong one, please!) we stopped off at the Visitor’s Information Centre for great coffee and Caramel Slice before driving our town checking out the murals.

Red Bus Mural, Kurri Kurri.

Red Bus Mural, Kurri Kurri.

Next stop, was my cousin’s wedding. This was so exciting that my trigger-happy camera finger went into overdrive and I’m surprised I haven’t developed some form of RSI. The wedding and reception were beautifully intimate and included personal wishes from the groom’s grandparents, which just added a certain magic.

We drove home last night and had my uncle to stay. Made him pancakes for breakfast and must’ve totally exhausted myself as I didn’t photograph his visit at all.

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Drove down to Sydney to pick up the kids and head off to the Muscular Dystrophy NSW Annual Christmas Party, which is so generously put on by the staff at the Commonwealth Bank in Parramatta. This is a real extravaganza and the kids loved playing on the slot car rack and enjoyed the arrival of Santa and their presents. I was particularly thrilled to meet up with other members…friends I’ve made at an Adventure Camp I’ve attended. This is my community.

Mister with Santa

Mister with Santa

Right now, I’m ready to hang up my red shoes. “There’s no place like home” and a deep sleep!

I hope you’ve enjoyed our coffee and I look forward to topping up the caffeine levels when I pop over your way.

This has been part of the Weekend Coffee Share. Here’s the linky: http://www.inlinkz.com/new/view.php?id=585846

Love & Best wishes,

Rowena

PS Bilbo and Lady have made an an appearance at the Weekly Pet Share November Round-up. It’s a great post! https://hopethehappyhugger.wordpress.com/2015/11/30/weekly-pet-share-november-round-up/

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Touring HMAS Toowoomba, Garden Island, Sydney.

Seizing the day yet again, we drove down to Sydney on Saturday to tour HMAS Toowoomba, which was open to the public as a fundraiser for a group of children’s charities called Kids in Need. These charities included Muscular Dystrophy NSW, which assists me with managing my dermatomyositis, which is a neuro-muscular condition. Unlike Muscular Dystrophy, there is treatment for DM, although not always as effective as we’d like.

HMAS Toowoomba

HMAS Toowoomba

The Police were all waiting for Mister to turn up.

The Police were all waiting for Mister to turn up.

HMAS Toowoomba was docked at Garden Island, in Sydney Harbour. Garden Island is located to the north-east of the Sydney central business district and juts out into Port Jackson, immediately to the north of the suburb of Potts Point. Used for government and naval purposes since the earliest days of the colony of Sydney it was originally a completely detached island. It was joined to the Potts Point shoreline by major land reclamation work during World War II.

The kids at the entry to base.

The kids at the entry to base.

Garden Island is so-called because it was planted in 1788, in the first months of European settlement in Australia, to serve as a kitchen-garden by officers and crew of the First Fleet vessel HMS Sirius.[2] Initials carved into a sandstone rock on the site are believed to be the oldest colonial graffiti in Australia, comprising the letters “FM 1788,” representing Frederick Meredith who served as Sirius‍ ’​ steward.[3]

Frederick Meredith carved his initials into the rock at Garden Island in 1788, the year the First Fleet arrived in Sydney.

Frederick Meredith carved his initials into the rock at Garden Island in 1788, the year the First Fleet arrived in Sydney.

Which came first Qantas's  flying Kangaroo or the Navy's ocean hopper?

Which came first Qantas’s flying Kangaroo or the Navy’s ocean hopper?

HMAS Toowoomba (FFH 156) is the seventh Anzac class frigate of the Royal Australian Navy (RAN). She was laid down in 2002 by Tenix Defence Systems and commissioned in 2005.

In 2007, Toowoomba was deployed to the Persian Gulf as part of Operation Slipper. Her second deployment to the Middle East occurred during the second half of 2009. As part of this, she became the first RAN vessel to operate with the counter-piracy Combined Task Force 151.

If you look behind the kids, there is either the perfect location for hide & seek or time out.

If you look behind the kids, there is either the perfect location for hide & seek or time out.

 

Geoff testing out their breathing apparatis.

Geoff testing out their breathing apparatis.

The kids with "Oscar" their crash test dummy. He leads quite a rough life and has had 4 reincarnations in the last 12 months. Apparently, a shark got his hands.

The kids with “Oscar” their crash test dummy. He leads quite a rough life and has had 4 incarnations in the last 12 months. Apparently, a shark got his hands.

Missis now ready to put out any fires onboard.

Miss is now ready to put out any fires onboard.

 

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I was absolutely stoked at being able to make it up this ladder. A testimont to the power of prednisone and being in remission.

I was absolutely stoked at being able to make it up this ladder. A testimont to the power of prednisone and being in remission.

Standing under the "cannon", or whatever you call it.

Standing under the “cannon”, or whatever you call it.

Obviously, we had a fabulous day out and would liike to thank everyone who made it possible!!

xx Rowena

Xtreme Sports

If you were in a crowded room and you had to pick the person into xtreme sports, you’d never choose this wobbly woman with the walking stick but perhaps it’s my broken wings which turns even a humble walk into an agonising fall, resulting in an X-ray and a broken foot.

Being more at home in a cafe with my cappuccino and chocolate cake swimming in luscious sauce than bungy jumping or climbing Mt Everest in anything other than the metaphorical sense, I was plucked out of my chocolate sauce and landed smack bang in an adventure camp, with Muscular Dystrophy NSW in  2012. This was the beginning of the end.

I went down this water slide twice, after almost blowing my brains out the first time down when water blasted up my nose.

I went down this water slide twice, after almost blowing my brains out the first time down when water blasted up my nose.

For me, even being away from the known and predictable at home with my mobility issues wasn’t easy but being with people who knew and understood my limitations provided me with the safety net to launch myself way beyond my comfort zone and take on what really were xtreme challenges and yet, it just felt like going with the flow at the time.

Camel Riding. This was more challenging than expected.

Camel Riding. This was more challenging than expected.

This confidence was greatly aided, too, by the unofficial MDNSW Mantra “find a way”. Just because your disability or chronic health condition might prevent you from participating in an activity in a conventional way, it doesn’t mean it’s impossible.

Here I am riding the quad bike. Of all the activities, this one took me most out of my comfort zone.

Here I am riding the quad bike. Of all the activities, this one took me most out of my comfort zone.

Trying out the quicksand. It felt really weird gripping onto my leg and it took a bit of  assistance to get out.

Trying out the quicksand. It felt really weird gripping onto my leg and it took a bit of assistance to get out.

Sandboarding, Stockton Dunes.

Sandboarding, Stockton Dunes.

Going parasailing changed the colour of my day. It's the closest I've ever come to feeling as free as a bird.

Going parasailing changed the colour of my day. It’s the closest I’ve ever come to feeling as free as a bird.

Ready for Take Off!!

Ready for Take Off!!

A year later, I did a second adventure camp and this time, I was thrilled to have a go at surfing. This was quite a big deal riddled with challenges before you even considered trying to stand up. There was finding a wet suit big enough to fit and then managing to squeeze into it, which isn’t easy when you have muscle weakness. Then, there was carrying my board down to the beach. Actually, I did get assistance and later ended up being able to drag the thing along the beach. Not very cool but I was stoked!! Although I didn’t get anywhere near standing up, I did manage to start in a kneeling position. That was as good as it got but I was certainly living the dream!!

Not so cool...lugging my surfboard.

Not so cool…lugging my surfboard.

Skiing down the mountain at Perisher in August 2013.

Skiing down the mountain at Perisher in August 2013.

From here my next big leap into the wild world of xtreme sports was skiing. This was where I was really taking myself way beyond my comfort zone!! There I was perched at the top of the Village 8, peering over the edge of what felt like an almighty precipice…a sheer cliff dropping down, down, down towards Perisher village, which looked like more than hundreds and thousands sprinkled on buttered bread. If I was ever swallowed up by my own fear, this was it and instead of gliding smoothly down the slopes, I soon fell over. Was gasping for breath. Indeed, I was consumed by pure panic. I mean just because you’re doing an xtreme sports that doesn’t mean you’re not afraid. It means you’re brave, courageous…or perhaps just a fool going where angels fear to tread.

You try wielding a paddle with a great big Border Collie in your face! Geoff said Bilbo was actually lying across him when he took Bilbo out.

You try wielding a paddle with a great big Border Collie in your face! Geoff said Bilbo was actually lying across him when he took Bilbo out.

Not content to stop there, I undertook what might have been the most xtreme sport of them all…going kayaking with two dogs on board. When I undertook all those activities with MDNSW, I had a solid, well-trained team behind me who could leap to my rescue, if necessary. Take it from me, it has been necessary… especially for the more xtreme challenge of walking along a footpath with all its inherent dangers. Anyway, when you’re trying to paddle with 35 kilos of terrified Border Collie quite literally in your face and 20 kilos of naughty Border Cavalier perched on the very edge of the kayak with her tail dangling in the water about to topple it any second, there is no safety net. We’re just going to fall. Fortunately, being an inter-tidal zone, it’s not very deep and despite the shenanigans of my fellow passengers, we managed to stay afloat. See more here: https://wordpress.com/post/35828219/6564/

However, there is another side to all these incredible achievements. You see, although I’ve been able to pull these off against all sorts of odds, I have struggled and indeed failed at times to manage the simple, every day stuff. Indeed, since I had chemo for 7 sessions over Christmas  2013-2014, my sense of time has been completely wiped out. I have no idea and now manage with the help of routines plastered on cupboard doors, alarm clocks, buzzers and indeed, multiple screw ups. It completely dumbfounds me how I can achieve the extraordinary and yet completely fail the ordinary. However, it’s unsolvable questions like this which ultimately fuel my writing and keep me off the streets.

xx Rowena

Miscellaneous Mutterings

Since I’ve been doing the Blogging A-Z April Challenge, I’ve developed some kind of additional neurosis…some kind of mutation, which has been completely overlooked by the DSM Manual, otherwise known as “the psychologists’ Bible”.

M is for Monkey

M is for Monkey

Every morning, no sooner than I’ve inhaled my kick-starting coffee, it all begins. I start jibber-jabbering away to myself and all sorts of words start cycling and recycling through my clunky head as I try to pick my word to go with the day’s letter. You see, I am now halfway through the Blogging A-Z April Challenge and with each passing day, the jibber-jabbering is only getting worse…the proverbial broken record.

Being a new recruit to the challenge, I didn’t realise until it all got underway that people generally write to a theme and turn it into quite a project. That’s right. This challenge goes way beyond simply reciting the alphabet and writing about “A is for apple”. My theme has ended up being “A few of my favourite things” and I’ve also been following the challenge on other blogs where I’ve been blown away by the amount of research involved and have learned so much!!

M is for Monster

M is for Monster

While I have written a list of topics for each letter, some days I’ve revisited it and changed my mind.

For some reason, trying to pick something for M today has had me muttering more than usual.

Mummy

Mummy

In a sense, M has to be Mummy, which I guess could also be M for Me. However, the trouble with writing about my journey as a Mum or about myself as “Mummy” is to come up with an angle that isn’t sickly sweet and sugar-coated or isn’t some never-ending whinge to end all whinges, leaving you all wondering why I ever had kids and thinking I don’t deserve them.

Next.

I did consider M for Manual, as in receiving a parenting manual when you give birth so you know what to do. After all, here in Australia, you have to sit a tough written test to get your Learner’s Permit before you can even start learning to drive a car Yet, when it comes to becoming a parent and leaving the hospital with your bundle of joy, there is no test. No licence required. You’re just left on your “pat malone” with what often turns out to be, quite a complex little bundle.

However, once I explored the manual concept further, I actually decided that I really didn’t want a manual or any kind of prescription telling me how to parent my kids. After all, being a bit of a free-thinking, creative type whose journey pretty much goes off road well beyond the road less traveled, I don’t want to create a pair of robots and I really don’t want to become a robot myself. I do try to have a routine during term time but come school holidays, I really do like to mix it up a bit, go away and explore something new but also just hang out. We all need to recharge a bit for another school term.

So, before I’d even written a word, I’d eliminated Mummy, motherhood, parenting manual and if you knew me in real time, you’d know that minimalist isn’t me. No, it’s definitely not me at all although I do appreciate those that fastidiously declutter their homes. They drop all sorts of fascinating treasures off at the op shop, which I snap and re-house. After all, treasure should never be homeless. We just need to get a bigger home or open a museum.

G'day Mate: a typical Aussie male greeting often used to disguise the fact they can't even remember their best friend's name.

G’day Mate: a typical Aussie male greeting often used to disguise the fact they can’t even remember their best friend’s name.

I had originally been intending to write about miracles, which ties into what became something of a life mission to “turn my mountain around”. You see, I have an auto-immune disease called dermatomyositis as well as a neurological condition, hydrocephalus, which both give me some mobility challenges. In 2012, our family went on our first trip to the snow and although the rest of the family was going skiing, I didn’t think I could do it. Instead, I bought a pair of snow boots and intended to photograph the snow instead. However, on arrival, we spotted the Paraolympic ski team, who were out zooming down the slopes on sit skis.  This sowed a seed of doubt and I started to wonder whether I, too, could ski. We had a chat with them and they introduced me to the Disabled Winter Sports Association. We couldn’t get organised in time for that trip but I set myself a goal for the following year to ski down the mountain and in effect, turn my mountain around. In what really was quite a miracle, although it also took a fairly large dose of courage and encouragement from the family and my ski instructor, I made it down the mountain and turned my mountain around going down instead of up the mountain.

M is for mountain From Alphabet by Paul Thurlby Published by Templar Publishing

M is for mountain From Alphabet by Paul Thurlby
Published by Templar Publishing

I was so excited and on such a high, that I forgot all about the laws of physics and that what goes up, must come down.

Before we’d even left the skifields, I developed the first signs of a chest infection, which despite preventative measures, turned into a life-threatening bout of pneumonia and my auto-immune disease flared up and was attacking my lungs. Before I knew it, my life was flashing before my eyes and instead of being on top of the world, I was having chemo and fighting for my life.

Of course, this totally flipped my mountain back around and in the process it turned dark, stormy and very foreboding.

This wasn’t how my story, the motivational book I was working towards, was supposed to end up. This wasn’t the plot I’d worked out. No, it was anything but. I put the book writing plans on hold. Indeed, I was so sick that I didn’t have a choice.

You can read about my ski challenge here: https://beyondtheflow.wordpress.com/2013/09/11/turning-my-mountain-around/

However, if you know anything about Joseph Campbell and the hero’s journey, you’ll know that any journey has it’s complications or challenges but that doesn’t mean that’s where the journey ends. No, instead, we’re supposed to tackle those complications and work them  out and ultimately reach that perfect happy ending. We just need to make sure we don’t give up half way before things start turning around and starting to work out. Moreover, once we reach that happy state we need to end that journey before another journey begins, taking us to a completely new destination with a whole new set of complications, challenges and rewards.

While at first thought, it might seem desirable to get rid of all the mountains in our way to make the road smooth, without these mountains, we would never be stretched and grow to take on tougher challenges. We’d never find out what we are made of. This would be a serious loss because, through my own journey, I’ve truly come to appreciate that each of us is truly capable of doing and being way more than we ever thought possible.

Indeed, each of us is a living, breathing human miracle.

We just need to believe.

It seems that I should have had a bit more faith in my miscellaneous mutterings. It’s been quite an interesting journey and I actually found a destination after all.

Indeed, it could even be motivational.

xx Rowena

PS Geoff was doing a few miscellaneous mutterings of his own today after driving the kids all the way to their Scout Camp and finding out our daughter;’s daypack had been left behind. Unfortunately, she’d put most of her essentials inside and so a very loving Dad is driving all the way back to Nelson Bay to drop it off again tomorrow. Mutter…mutter…mutter!

PPS: Bilbo, our Border Collie, has added his howls to the mutterings tonight. Somehow, he managed to fall in the swimming pool. I had a friend over for dinner and we heard a splash follow by a few more splashes and the poor boy was desperately trying to pull himself out. I am so relieved I was within ear shot. Poor Bilbo. He doesn’t even like to get his paws wet so this was really quite an ordeal!!

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 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