Category Archives: Chemotherapy

The Journey Home…A Personal Quest.

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

– Matsuo Basho

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

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

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The Good Little Girl.

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

Rowena 1981

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

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

Rowena Dressing up

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

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

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

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

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

Poetry Reading

Performing My Poetry in Paris in 1992.

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

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

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

Eckhart Tolle

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

“Knowing yourself is the beginning of all wisdom.”

Aristotle

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

Performance Queanbeyan 1886

 

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

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

Aunty Rose & Kookaburra.JPG

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

Two roads diverged in a wood, and I—

I took the one less traveled by,

And that has made all the difference.

– Robert Frost.

Rowena Lizottes

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

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

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

The Missing Piece

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

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

Best wishes,

Rowena

Dealing With Characters in Non-Fiction.

Not every writer aspires to write a novel. Although I have stumbled into a passion for both writing and reading flash or bite fiction, my book-writing aspirations focus almost exclusively on writing non-fiction.

By non-fiction, I’m not referring to something along the lines of memoir and motivational writing. However, a few years ago, I stumbled upon some gripping stories through my family history research, which were writer’s gold. You know, the sort of stuff which could easily be described as “the Big Bang”.  After all, as the saying goes, “fact is often stranger than fiction”.

Anyway, after having yet another monumental tussle with a character this week, I thought I’d share a few peculiarities I’ve encountered dealing with characters in non-fiction.

Obviously, the very clear distinction between developing characters in non-fiction, is that your characters are or were real people. They’re not products of your imagination, even if they were inspired by real people.

This places certain limitations on how you construct and develop your character. For example, you can’t just make up where they lived, their occupation. Moreover, something real has happened to spark the story in the first place. So, as the author, you’re not really in command of character development or plot. Indeed, you’re role is more that of a meticulous restorer, than a designer.

Using the Proust Questionnaire.

This is where turning to the Proust Questionnaire can be particularly helpful, as it allows you to focus on and bring out the idiocyncracies of your character. It poses a series of questions, which may be used to “interview” your character. Here’s a brief snap shot, which was taken from the Vaniety Fair version.

1.__What is your idea of perfect happiness?

__2.__What is your greatest fear?

__3.__What is the trait you most deplore in yourself?

__4.__What is the trait you most deplore in others?

__5.__Which living person do you most admire?

Character Have Limitations in Non-Fiction

Clearly, with your characters being real, this places all sorts of restrictions and limitations on how you can develop your character if you are trying to be truly authentic, rather than using a real person as a launching pad into fiction.

With the pieces I’m currently working on, I’m trying to be as authentic as possible. Indeed, I am in effect being, in effect, more of a restorer, than a designer. I’m working with my tweezers and magnifying glass to get those little details right, and yet at the same time, using a broad brush to create suspense, action and all the usual tools that you usually use to make a story worth reading. After all, a reader has no obligation to read anything we write, and there has to be an exceptionally good reason for them to even read the title, let alone the opening page. The days of readers bowing and scraping to the almighty author are long gone. We are the ones who need to get down on our knees and thank the reader. Be thankful they gave us their precious time.

Meticulous Research, Minimal Use.

This is why you don’t want to burden your reader with too much detail, even though you may have volumes of research. They should only see the tip of the ice berg. That’s not to say you don’t need the ice berg, but the reader is also interested in the other bells and whistles. You need to know your stuff. They need to know you know your stuff, but they don’t want you to regurgitate it all over them.

There is beauty in simplicity, something I’ve been appreciating more and more through writing and reading flash or bite fiction. A well-chosen object, piece of clothing, or even the use of language, speaks volumes. You don’t always need to write a novel.

Best Guess is Good Enough.

Another challenged I faced writing non-fiction, was working out about how to fill in the gaps. There’s stuff I don’t know. Can’t find out. Making things up bother me. Was it lying? However, I don’t believe there’s any harm in a best guess scenario. After all, the lines between fact and fiction are really quite blurry once you look into them. There’s always an overlap. Well, at least, that’s my humble opinion. I certainly wouldn’t call it “lying” or “fabrication”, and I am fairly fastidious about getting historical detail right.

The Character Drives Plot. The Author is the Passenger.

This week, I struck a another challenge peculiar to writing non-fiction. You are not writing or making up the plot. Rather, your character is in charge, and doesn’t care whether their next step is going to scuttle hours of work, and your entire philosophical position. No. They just do what they like and all you can do is structure and arrange facts and events, through your own editing lens.

The project which brought this to light, was actually my family history research. While I have been developing a series character sketches, which I’ve been posting on the blog in preparation for a book, I actually had nothing to say about my 4th Great Grandfather, John Johnston. I couldn’t find anything.

Plot is Unpredictable

However, after 20 years of passive research, I found out John Johnston was convicted of bigamy in New Zealand in 1864. Indeed, not only was he still married when he married my 4th Great Grandmother, Maria Bridget Flanagan. They even had four children, and it wasn’t like they weren’t living nearby either.

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This could well be John Johnston approx 1886.

As you could imagine, this changed a lot of things. Indeed, it actually changed his name. He was known as “Alexander John”, despite having a younger brother who was Alexander.  Moreover, instead of immigrating directly from Scotland to New Zealand, I found out that he had been living in Liverpool. Indeed, he had married Jane Ellen Jones at St James Church, Toxteth Park, Liverpool in 1855. Alexander John and Jane Ellen then lived with her parents for four months. They ultimately had four children and at least two of them were born in England. Alexander John moved to New Zealand around 1860 and three months later, Jane Ellen and the children sailed out. They settled in Dunedin where Alexander John was licensee of the Argyle Hotel until he went off to the diggings.

Understandably, my impressions of John Johnston nose-dived sharply. Although I’d never found any signs of greatness,  family legend had it that he’d built the North Sydney/Cammeray Suspension Bridge in Sydney in 1892. As it turned out, that was built by his brother, although we’re sure he was in there somewhere. Previously, I was thinking very much in terms of right-hand man, not the family charity case. Meanwhile, his other brother, Angus Rutherford Johnston was some kind of Indiana Jones type character who’d fought in Nicaragua, had been shipwrecked and captured by Indians, escaped, found gold and settled in Nanaimo, Vancouver Island where he ran a successful store. This has been, and continues to be, a family of high achievers. I’d always thought it was just a matter of time until I found out that John had built a railway, a monumental bridge or somehow made a name for himself somehow, and certainly NOT as a bigamist.

I won’t go into the ins and outs of the bigamy case here, except to say that he stared straight at his first wife in court and denied being married to her, despite their four children. Indeed, when he took the the detective round to see his wife, he really seemed to apply the charm: ” Jane, my girl, you wont prosecute me,” You see, it was actually the Crown which was pursuing the case. In the end, “Alexander John” was found guilty and fined. He got off lightly on a technicality.

However, it wasn’t just the bigamy, or his denial which shot him down in flames. He was also a perpetrator of domestic violence. In 1863, he attacked Jane Ellen with a knife:

Threatening to Stab—Jane Ellen Johnston I charged her husband, Alexander John Johnston with threatening to stab her with a knife on the 13th inst. The defendant was required to give bond to keep the peace towards her for six months, fined in the amount of £lO, and to find two sureties tor £2O each.”

Otago Daily Times, Issue 464, 16 June 1863

I knew nothing about this a week ago, and as you could imagine, it changes everything. I was shocked right to the very core. After all, you don’t really need much of a sense of ethics or values to know this man was a bastard, or at least capable of acts of pure bastardry.

However, as if all of this wasn’t already bad enough, it gets worse. Much, much worse.

On the 8th February, 1866 Jane Ellen and Alexander John’s nine year old son found a pistol, which his mother thought was safely out of reach. Jane Ellen was out in the garden weeding with two of the other children, when she heard a firearm exploding. Nine year old, Thomas James Johnston had shot his 15 month old sister, Ellen Overton Johnston, in the chest and she died. He didn’t know it was loaded.

Clearly, real life has now moved into the pits of hell, and to compound his first family’s agony, Alexander John was off living with my 4th Great Grandmother, Maria Bridget. Indeed, their son Angus had been born on the 6th January, 1865 and Margaret was born roughly a year later.

This wasn’t the story I was planning to write, even for my own consumption.

Of course, not all non-fiction takes such a turn for the worst. However, the story of John Johnston certainly illustrates that you need to be prepared for surprises, and somehow make the necessary adjustments.

The Challenge of Writing My Own Motivational Memoir.

I’ve faced different, but related challenges, working on a motivational memoir, known as: “The Book Project”. Just as I thought the plot was reaching it’s climax and about to trail off to its “living happily ever-after” conclusion, fate stepped in and the book was dead.

You see, I was working on a motivational book about overcoming my severely debilitating auto-immune disease, dermatomyositis and for 12 months, I was soaring. Flying high. I’d managed to all but turn my mountain around. I’d lost 10 kilos despite being on the fat drug, prednisone. I’d taken up the violin despite my disabilities and had played at a happening local music venue at our end of year concert. I’d started my blog and had built up an online blogging community. I’d also gone on an adventure camp where I’d gone parasailing, driven a quad bike and gone down the water slide on the boat without my glasses on, and had ridden a camel. I’d also managed to return to work one day a week as Marketing Manager of a local IT company and was also helping out in my son’s classroom as a volunteer teacher’s aide, and sometimes took the class. These were all things not only I had deemed impossible. It was all there in black and white, or at least shades of grey. The grand finale for the book, was going to be skiing down the Front Valley at Perisher, which would represent turning my mountain. Unable to climb a mountain and ever the individual, I’d decided to ski down the mountain instead.

Indeed, I did it. More as a terrified, quivering wreck of my former self, but I’d pulled it off.

However, even while I was still  down at the snow, I developed the beginnings of a severe chest infection, which blew up into pneumonia. One night while coughing uncontrollably, I briefly even stopped breathing. Meanwhile, a CT scan on my lungs showed that I’d developed fibrosis as a complication of the dermatomyositis, and suddenly the thrill of soaring steadily upwards, came crashing down and didn’t stop at ground level. It kept falling. Seriously, at this point I thought I was looking at a death sentence. Twelve months to live. I’d smacked into the wall, and I was all but a dead duck.

This wasn’t how the Book Project was meant to end. You can’t write a motivational book, which finishes off with you drowning in your own lungs. Come on. That’s not even a story you could give away, let alone become that guaranteed best seller I’d written in my head right down to the second last page.

Fortunately, my doctors put me on a series of chemo infusions of a drug called cyclophosphamide and five and a half years later, I’m still here, and I’ve been in remission ever since. Amen!

While these plots certainly plunged unexpectedly deep into the dark side, they do illustrate how when you’re writing about real people, the author is not in charge. Indeed, you’re much more of a passenger, than sitting in the driver’s seat. Indeed, you can see that at work even when I was writing my own story, although in that instance, it was fate which stepped in.

Clearly, this has become a very lengthy post, and so I’m going to stop it there and turn it over to you. Have you ever written non-fiction? How did you face and overcome some of the hurdles involved? It was be great to get a bit of discussion going.

Best wishes,

Rowena

A Legend in My Own Hair Follicles.

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

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

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

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

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

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

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

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

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

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

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

Best wishes,

Rowena

Weekend Coffee Share – May 14, 2018.

Welcome to Another Weekend Coffee Share!

I hope you are having a great weekend and that you’re enjoying your cup of tea, coffee or even Bonox.

We are now well into Autumn here and this weather is teaching me to shut up about our warm, balmy Aussie weather. Instead, I’m down on my knees apologising and eating humble pie. Perhaps then, this cold snap will disappear and we’ll be back to 24°C again. It’s currently 14°C or 58°F. If you ask anyone around here, anything below 18°C is “freezing”. We can cope with the heat, but the cold is our kryptonite.

Happy Mother’s Day to everyone.

My big question about Mother’s Day is why couldn’t I sleep in? Indeed, why couldn’t I sleep through Mother’s Day entirely? Surely, if it’s my one big day of the year, I can do what I like and this while idea of hanging out with the family and doing together stuff is over-rated. Well, you can be sure these days that you’ll have at least some peace and quiet because it’s quite impossible for people to stay off their devices long enough for you to get through lunch, especially if you’re sitting down and having a more formal occasion.

We celebrated Mother’s Day last night by going down to visit my parents in Sydney. When it comes to celebrations and fanfare, I usually like to do something big and festive but you also need a bit of inspiration. On Friday, I spotted a book in the supermarket: “Me and My Mum”. It’s one of those books you fill out yourself and add photos, drawings etc. and is pretty much designed for a young kid to give to their Mum. This made it all the more fun for me to fill it out and give to my mum. I printed out some photos of our family dog but most importantly, there was one of Mum and I both in our bikinis about 40 years ago, when I was about 10. It was a real hoot pasting that one in and I think I should frame that and stick it up on the wall…me with my glamorous, bikini model Mum. Well, she wasn’t a bikini model, but she could’ve been if she’d been that way inclined. Instead, she was a music student at the Sydney Conservatorium of Music. I’m not a huge fan of chrysanthemums so I bought her a cyclamen and it’s also not going to die in a few days like a bunch of flowers.  I bought one for myself too. I deserved it. Indeed, I deserved more, but that’s another story.

Yesterday, I was also helping out with the scouts. I spent two hours selling sausages to help fundraise for our kids to go to Jamboree. While the standing was a bit much and my maths struggled with the mental arithmetic, I enjoy being on the BBQs. I’m the frontline person who does the talking and takes the money, which suits me really well. I also spent an hour on the Mother’s Day flower stall. That felt like I’d stepped into someone else’s life and took me back to my childhood in Galston living on five acres. There were loads of market gardens and roadside stalls selling peaches, strawberries, flowers etc. Indeed, my friend and I sold lemons beside the road once. I was really in my element. Selling the flowers was a bit different. Like being someone out of a movie…the Flower Seller… It should be staring a young Julia Roberts and not a haggard mother. Well, actually, I did have a lot of help as we had a young joey scout who was incredibly cute and a born salesperson who did an amazing job. Very hard to say no to.

Friday, Geoff and I went down to Sydney for a mini conference for the Myositis Association. My autoimmune disease, dermatomyositis, falls under their umbrella and I’m also a member of Muscular Dystrophy NSW. I really valued the conference as I met other people in the same rare boat and also received some important medical updates. I really am wanting to keep in closer contact. I go through phases with this, as I can be feeling quite well and like it’s all behind me. But, then it’s not. It’s still there and just like the ocean, I can’t really turn my back on it. Indeed, things have been a bit up in the air lately and I’m having a chest CT tomorrow, more blood tests and another appointment with my lung specialist on Thursday along with more lung function tests. I am feeling better than I was a month ago when I saw him last and my lung capacity was down 20%. This takes me down to around 54% so I don’t have a lot to play around with. I’m not coughing as much so surely that’s a great sign. Then again, I could talk myself out of any worsening symptoms at the moment. I’m feeling a bit over it. Or, what I call “chronic illness fatigue”.

This brings me to a beautiful song my mother played for me last night. They’ve been watching Britain’s Got Talent and she wanted me to hear a priest sing. I was a little surprised and wasn’t too sure I’d like it either but you need to have a bit of faith and being a Mother’s Day celebration, I did the dutiful daughter thing and stopped and paid attention. I’m old enough now to appreciate what it means to make your mother happy and put yourself on the shelf for a measly five minutes. I’m very glad I did, because she played a YouTube video of Irish Priest, Father Ray Kelly singing Everybody Hurts At age 60, he was discovered after his personalized rendition of  Hallelujah went viral. It is so funny and Father Kelly is not only beautifully refreshing, but he has that old fashioned personal touch where he can put his finger straight on your heart and heal at least that sense of being the isolated soul. Here’s Danny Boy I highly, highly recommend you check these out and if you have a thing for Christmas jumpers, he’s wearing a beauty here. He has two cavaliers and it wouldn’t surprise me if someone knitted this personally for him.

I could listen to Father Kelly all day and all night. He brings a sense of peace to a stormy and busy world.

Eunice Empire State Building 1948

Eunice Gardiner, Empire State Building New York, 1948.

Before I head off, I thought I might just mention my contribution to Friday Fictioneers this week…A Pianist in New York 1948  The photo prompt featured the Empire State Building all lit up at night, and it reminded me of a photo taken of my grandmother up there in 1948 as an Australian concert pianist living and touring through USA and Canada. It was a beautiful trip down memory lane and I managed to find a few more details about her time there, which really remains quite a mystery to me. So, that was really special.

Well, that’s about it from me.

How was your week? What have you been up to? Hope it’s been a good week for you and you and yours are doing well.

Best wishes,

Rowena

 

 

Finding My Happy Feet.

“High heels are like a beauty lift. In a flat, you can feel beautiful, but a stiletto changes your mood, how you move – like a wild, beautiful animal. The idea was always to follow a woman’s wardrobe, her desires.”

Giuseppe Zanotti – Shoe Designer dedicated to providing women with “the most superlative shoes in the world”.

Confession time. While I’ve never fallen head over heels in love with a pair of shoes, I do have a thing for high heels. Indeed, since they’ve become the forbidden fruit, you could even call it an obsession.

Of course, I’m not the first person to believe high heels ooze sex appeal, a sense of fun, glamour and the promise of a glamorous night out. Indeed, anything but a night in with your cat watching re-runs of I Love Lucy.

Unfortunately, some of us are forced to hang up our stilettos long before our time. When even the Stiletto Queen has to hang up her sacred heels, and resort to (dare , I mention the unmentionable) SENSIBLE SHOES.  Or,  as my 11 year old daughter disparagingly calls them, “GRANNIE SHOES”. Whether through disability, accidents, chronic health, we’re left thankful to be alive, able to breathe and even move at all. As trivial as wearing pretty shoes might sound when you’re fighting for your life, they can also represent a broader sense of loss and grief after your life with all your grand plans and dreams, lands on the proverbial snake, instead of the ladder, in the game of life.

“You can’t understand someone until you’ve walked a mile in their shoes.”

This is the path I tread. I started this journey in my mid-20s when subterranean hydrocephalus in my brain, suddenly became graphically symptomatic. It was hard going to rehab and learning to walk again at 26 when all of my friends were out partying, their careers were still soaring and my life was heading the other way. I’d packed up my apartment and moved back in with Mum and Dad and was off to rehab in very sexy tracksuits, joggers and mixing with the over 80s.

Thanks to surgery, ultimately I largely recovered from the hydrocephalus, but still experienced debilitating fatigue.Moreover, the neurons weren’t firing in quite the same way either. I was fine but not fine.

However, at 35, I developed dermatomyositis, a debilitating muscle wasting disease after our daughter’s birth. It took 18 months to diagnose and by this point, I was in dire straights. As soon as I was admitted, I was put in a wheelchair. That was my legs for the next couple of weeks, followed by a walking frame and loads of prednisone. Despair doesn’t even begin to touch the depths of what I experienced then.  Survival was all that mattered and I didn’t even hope to see my children grow up. That was simply somewhere too far over the other side of the rainbow. I couldn’t even go there. They were still babies and wouldn’t even remember me if I’d passed. Rather, there was only today, tomorrow and each and every day was precious…the sort of precious you hold onto no matter how big the storm, how high the waves. Your life and everything you value, is hanging on by barely a thread and you won’t let go.

“What you wear – and it always starts with your shoes – determines what kind of character you are. A woman who wears high heels carries herself very different to a girl who wears sneakers or sandals. It really helps determine how you carry yourself.”

Winona Ryder

Yet, ten years down the track when the pressure’s eased off a bit, my need for footwear has taken on an element of urgency. The pup chewed up my one good pair of sensible shoes. After trawling round a few shopping centres, I haven’t found anything suitable. Not unsurprisingly, sensible shoes for the younger generation aren’t in high demand. Moreover, as much as my daughter might call sensible shoes “grannie shoes”, there’s still a line. A line I still can’t cross. I can’t. I can’t. I don’t want to turn 80 before my time. Instead, I might just have to go barefoot.

“I cried because I had no shoes until I met a man who had no feet”

― Helen Keller

So, with my shoe situation becoming desperate, I confess I muttered a prayer…a prayer for a pair of simply black shoes, comfortable, supportive and wouldn’t kill me. I wasn’t asking for luxury but something on your feet is a necessity, perhaps not quite in the vein of needing to eat but protecting your feet isn’t frivolous nonsense.

“I’ve spent $40,000 on shoes and I have no place to live? I will literally be the old woman who lived in her shoes!”

Carrie Bradshaw, Sex In The City

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So, after that long preamble, perhaps you can now understand why I was so overjoyed when I spotted a pair of black, Louis Vuitton sandals in the local Vinnies charity shop. They were completely flat and fit me perfectly. I’m not even sure if they’d been worn. Time to do the happy dance, except wait, there’s more. There were also two pairs of luxury Italian leather shoes. These shoes would’ve cost around $3000 new, so I was overjoyed to pick up the lot for $35.00. One pair was a little on the small side, while the others have a small heel and I’m not exactly sure how far I’ll be able to wear them. I might need to use my walking stick or stay sitting down, but I don’t care. I’ll find a way. Find somewhere suitable to wear them, and I’ll be the phoenix soaring from the ashes of disability, chronic health and all efforts to make me old before my time.

By the way, ever the storyteller and writer, I also had to cast a thought about how they got there. Whose shoes was I walking in and where were they going to take me now?  We live round the corner from Pearl Beach, which is a bit of a millionaire’s hideout. It’s where Bill and Melinda Gates stayed when they were out in Australia, and its not impossible that they might have belonged to the likes of Nicole Kidman, Cate Blachette although Hugh Jackman might be too big a stretch. It might even be possible that Carrie Bradshaw and her enormous shoe collection migrated there after Sex In The City folded. Whatever, I hope whoever owned these shoes, led a good life and will share a bit of their sparkle with me. After all, I’m still trying to re-climb proverbial ladder, and reach back up for the stars.

Meanwhile, I’m giving thanks for such a spectacular answer to prayer, and I can’t wait to launch into the next chapter. Surely, it has to be amazing! After all, I’m a believer.

Have you experienced any miracles lately? Please share them in the comments.

xx Rowena

PS The featured image was taken at Circular Quay alongside Sydney Harbour.

Dying Diva…Friday Fictioneers: 2nd Feb, 2018.

“They’re not getting these!” Grandma  snapped, clinging to her diamond earrings. “Chopping away at me like I’m some sort of bonsai… Enough is enough!”

Catherine was determined to keep her ear lobes, and she sometimes wondered if that’s all she’d have left after the docs had finished chopping away. The virulent melanoma had spread its poisonous ugliness through almost every vein, artery and cell. There wasn’t much left of her anymore.

Yet, she hadn’t forgotten who she was… Madame Butterfly. She might not be able to walk anymore, but she still had her wings and she knew how to fly.

This has been a contribution to Friday Fictioneers hosted b y Rochelle Wishoff Fields. We are required to write a 100 words in response to a photo prompt. This week’s photo is © Rochelle Wisoff-Fields.

Have you ever been in a difficult spot where you felt everything was being taken away, but you took a stand. Drew a line in the sand, which you wouldn’t cross? I’d love to hear from you in the comments.

Back in my 20s, I refused additional brain surgery, largely out of concerns about losing my hair. They’d already hacked hair off the back of my head and this time, they wanted to put a probe in the front and shave more off. I’d had enough. Lucilly, I recovered without the additional surgery and ended up with a full head of hair.

xx Rowena

Never Give Up!

Yesterday, I almost cried with joy…relief. It was a true Eureka Moment moment. Just like you can strangely sink into a pit of despair over that proverbial glass of spilled milk, I found myself close to tears of pure joy, just by having my carpet cleaned. The “new” carpet wasn’t perfect, and still has its battle scars (mostly thanks to the fish tank). Yet, the metamorphosis was UNBELIEVABLE!!

We have wrestled for years about whether to get the carpet cleaned, or replace it. While replacing it seemed the obvious choice, we couldn’t agree on what to replace it with. So, its been  lingering on life support for eternity.  It’s only thanks to the funding I’ve received through the National Disability Insurance Scheme (NDIS), that this became possible. That’s largely because I didn’ need to think about it. I could just do it. “Have a Nike moment”. Well, to be honest it took a lot more than just a Nike moment. It took a hell of a lot of work to “be prepared”, and that could only happen because the dermatomyositis is in remission and I have this NDIS funding.

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Now that the carpet’s returned from the dead, I have a glimmer of hope that the rest of our house isn’t dead after all. As they say, success breeds success, even when it comes to something as small and seemingly insignificant as the carpet. Slowly but surely, I’m getting my dignity back…and not just in relation to the state of the house, but I’m also feeling the cogs moving much more smoothly within.

Being something of a lounge chair philosopher, this brings me back to something I’ve considered before:

Is your house is a reflection of your soul, who you are as a person or your state of mind? Or, does it stand alone?

Naturally, it would make logical sense that whatever “stuff” is going on in your household or your life, that your house would become some kind of mirror or reflection. However, that can work both ways. Some people seem to throw themselves head long into maintaining the fascade during a crisis, seemingly to hold up the crumbling interior. For us , that hasn’t been an option. I’ve been sick for way too long and even the support crew’s had it. So, at our place, the house and garden have also cracked…along with the mirror.

However, is this crumpled wreck of my self or the accompanying shell, the real me, especially when I’m not living alone? After all, a family home is a family home, a canvas each of us paints and even when we live alone, a house isn’t a blank canvas. There are functional, financial and cultural considerations which reign our vision in. Most of us can’t just splat our real selves everywhere. Or, at least shouldn’t!

 

The photo on the left shows me having a transfusion of IVIG. I had these every 3 weeks for five years until my treatment regime crashed with a flare and I had chemo. In the photo on the right, I’m playing Beethoven’s Moonlight Sonata after a chemo treatment. 

Yet, strangely we are resurrecting. I’ve been in remission for 3.5 years. Moreover, about four months ago, I was approved for our National Disability Insurance Scheme and any looking back has only been to celebrate my onwards and upwards progress. Well, that’s aside from my usual bout of severe chest infections, and the operatic cough which hails from the dark side of Hades. Indeed, I’ve been wrestling with all sorts of horrors lately as I’ve barked my way along some grueling, grim tributory of the River Styx filled, which is populated by all sorts of ghoulish spectors and shadows. Just picture the grim reaper, and I definitely believe he’s been stalking me for the last four weeks. However, I’ve become a seasoned veteran of the battle, and his attacks are not as severe as they once were.

 

Anyway, under the NDIS, I’ve been able to get extensive help at home and we’re steadily chipping away at years of neglect, struggle and the too hard basket, which has been overflowing with so much rubble that it’s toppled over.

So, you could just imagine my relief, my exuberarant joy and tears, when I said: “Hello carpet” yesterday.

It was also: “Hello sky”, because I also had the windows cleaned and much to our amazement, they’re clear. My daughter even joked this morning, that the magpie might fly into the glass and hit it.

The state of the windows was just another thing I’d switched off to. I know people do get their windows professionally cleaned, but this was out of our league and in terms of DIY, we’ve been struggling to put one foot in front of the other before NDIS. Windows, to me, is a computer thingy.

So, even though I’ve missed my usual contribution to the Weekend Coffee Share this week, I’d love to invite you round for coffee right this minute. That is, while the windows and carpet are in a blissful state of suspended animation, and you can actually see the floor. I know it won’t take long for trouble to return. We’re moving into Spring here and we have a little black dog who covers our carpet in a layer of felt. We also have two kids and my husband and I are also human.

In other words, we live in the real world…not Facebook or a magazine.

Have you experienced anything like this lately? Something you would call a “Eureka Moment” which has almost had you jumping out of the bath and running naked through the streets like  Archemedes? If so, I’d love to hear it and these stories are so encouraging to people in the thick of the storm, who doubt there’s any way out.

dog in the storm

Stupid me actually drove into this storm in search of “the shot”. I ran to my car which became my “tin can”, while hail the size of a golf ball pummelled the car. Even the sound alone, was terrifying.

On the other hand, if you’re currently feeling trapped in the thick of the storm, know you are not alone. A lot of people have been there or are there right now, and are only too willing to hold your hand either figuratively or in person. I would encourage you to hook up with some people sharing your experience, especially veterans and survivors of your particular battle. I know I’ve certainly found a lot of comfort with “my colleagues”, my “fellow travellers” in the same boat.

Take care and don’t forget to count and even search out your blessings. There’s always something, no matter how small. Or, perhaps it’s so big, you’ve only seen its feet.

Love & best wishes,

Rowena

Rowena sun

Here I am at Railway Park, Byron Bay. The artwork was done by a mum whose son died in the park from an overdose of prescription drugs. She undertook this art in the park project to help save others.