Category Archives: Chronic Illness

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

louis-vuitton-patent-paradiso-flat-sandals-36-noir-black-00016

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

Weekend Coffee Share 28th January, 2018.

Welcome to Another Weekend Coffee Share!

Had you arrived last night, I could’ve offered you a Raspberry & White Chocolate Scone straight out of the oven and dripping with melted butter. Personally, I thought they were baked to perfection. However, I had a comment from one about too much salt and not enough white chocolate from two. This lot is way too fussy and we ought to stop watching all these cooking shows before they get any worse. There’s no such thing as tinned spaghetti on toast around here, and sometimes it would be a blessed relief.

Raspberry Scone

Raspberry & White Chocolate Scone made by yours truly.

To be perfectly honest, I can’t even remember the last week. Indeed, rather than thinking about the week that was, I’m actually fixating on the week to come. It’s the start of the new school year here, and this is when my New Year really hits the road and resolutions turn into reality…or not! Gone are the days of arriving back from holidays the night before and winging it with last year’s uniforms and the Christmas tree still up. Our daughter starts her first year of high school on Tuesday and after a few years under our belts with her older brother, we’ve learned that you need to start the year off with a bang. That’s because it’s inevitably a slippery, downhill run from there. Of course, their uniforms will be ironed for the first day. Shoes polished. These kids might even be polished and…pigs might fly!

The one thing I still haven’t quite got my head around, is how to flick the switch from Holiday Time to School Time. I swear this transition leaves jetlag for dead. Late nights and sleeping in, traded in for early morning starts, activities after school and trying to push for early nights. Thank goodness for coffee!

I should also mention that Friday was Australia Day. We didn’t celebrate Australia Day, but we didn’t not celebrate it either. You see, there’s a growing movement in Australia to change the date because it’s  celebrating the day British settlement was established with the arrival of the First Fleet in Botany Bay on the 26th January, 1788. However, some Indigenous Australians have rebadged Australia Day, “Invasion Day”. This acknowledges that Australia wasn’t “terra nullus”, but inhibited by Aboriginal people and a treaty should have been signed. I personally would like to keep the date but change the meaning so that celebrations acknowledged these sentiments.

Sailing on Australia Day.

On the other hand, our son sailed in an Australia Day Regatta with the Sailing Club. He sails in a Flying 11, which is totally beyond my comprehension. I’m more familiar with Lasers and only then as ballast and making sure I don’t get hit in the head by the boom! This takes a lot of concentration.

On a more positive note, I have managed to put together a post about living with adversity: Life Was Meant To Be Easy. I hope you might find it encouraging.

Our pups Zac and Rosie are now about six months old and dear Rosie is chewing everything in sight and even contraband that’s out of reach. We left them inside while my husband manned the scout BBQ at local Australia Day celebrations in case they freaked out with the fireworks and got home to find they’d murdered the tissue box and spread it’s entrails all over the loungeroom. It was obviously very dead and this episode reiforced yet again that as much as I try to exercises the forces of good and cleanliness in this house, there are forces of mischief working against me at every turn.

Once the kids are back at school, I’m planning to indulge in a ferry trip to Palm Beach once the heat has settled down a bit. I also have a very long backlog of coffees to catch up on with friends. Thrown in with all of that, I’ll be sussing out for some paid work. Not just any paid work, but somehow getting my marketing communications path onto some kind of track.

All these thing seem pretty unexciting, but I’m pleased to report that the cough is much better. It’s still there and my ventolin is always by my side but the light on the horizon is getting closer. Thank goodness!

Hope you’ve had a good weekend!

This has been another Weekend Coffee Share, hosted by Eclectic Alli.

Best wishes,

Rowena

 

 

Life Was Meant To Be Easy.

According to the “Feel Good School of Thought”, life is meant to be easy. Adversity is a transitory thing that we can simply power through, as long as we “think happy thoughts” and “stay positive”. “If it feels good, do it. If it feels bad, give up.” However, from this perspective, we might as well pull the pin when “shit happens”. There is no reason to live.

Yet, ironically humans thrive on being challenged, using our problem-solving abilities, and overcoming adversity. We’re meant to use what we’ve got, even if some of the equipment isn’t in peak form. Indeed, adapting to these challenges stimulates the mind. After all, we were never designed to be couch potatoes, or even worse, liquid mash. Rather, we were meant to grow roots and broad branches, and stand tall on the inside, no matter what our design. Just think about how often you hear heroic stories of everyday people overcoming huge setbacks and surging forward in a new direction. Indeed, their curse can even become their blessing. The Paralympians embody such triumphs.

“I think a hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles.

So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable.

Once you choose hope, anything’s possible.”

-Christopher Reeve.

At a more basic level, I remember my Dad encouraging to overcome fear and have a go. His big line was: “it’ll put hair on your chest”. As a little girl, I didn’t quite get what he meant and took him quite literally and I didn’t want hair on my chest. However, these days, this sort of grit has been rebadged as “resilience”. This school of thought poses that we need to experience the bumps and knocks of life to grow stronger and prepare us for the big hit. This isn’t as much fun as thinking happy thoughts and only doing what feels good, but we do emerge more rounded and as the Scouts would say: “prepared”.

While that all sounds great in theory, it’s quite a different story when you’re lying face down in the mud with no known way of getting up. At this point, it’s quite natural to feel overwhelmed by shock, disbelief, anger and self-pity. However, if you want to move beyond subsistence, you have get yourself out of the quagmire and start thinking about taking those first few critical steps, be they literal or somehow figurative.  Staying put isn’t an option.

Rowena

This isn’t theory for me, but my own, personal experience. I have walked the talk, sometimes needing assistance.

When I was 25, I was diagnosed with hydrocephalus or fluid on the brain and six months later had brain surgery to insert a VP shunt. The hydrocephalus was pretty freaky. Although it was largely dormant for the first 25 years of my life, it rapidly became symptomatic and for the six month period in between diagnosis and surgery, I lived the bizarre and traumatic life of Oliver Sacks’s: The Man Who Mistook His Wife For A Hat. I had 6 months of intensive rehabilitation, learning how to walk and had occupational therapy to manage my life again. This all culminated in moving back in with Mum and Dad and a year off work. That in itself felt terminal. After all, when you’re living the story, you don’t know how it’s going to end. I slowly got back on my feet. Returned to work. Got Married. Had two kids. Then, the thunderbolt of medical misfortune struck for a second time. The birth of my daughter, triggered so much more than maternal joy. My hands turned raw. As it progressed, I couldn’t sit on the floor and get up again, dress myself. Eventually, 18 months later, I was finally diagnosed with dermatomyositis (DM), an exceptionally rare auto-immune disease where your muscles and skin cells attack themselves. As soon as I was diagnosed, I was put in a wheelchair and spent the next week or two in that and the next couple of weeks in a walking frame. I was only 36. Treatment made a vast improvement, but I went on to develop Institial Lung Disease with fibrosis, and affiliated chest infections nearly take me out most years. The Cough has now become such a permanent fixture, that I’ve called him Fergus.

I didn’t respond well to treatment for the DM, and five years ago, I had seven treatments of chemo. My specialist also changed my meds and I’ve been in remission ever since. Not smooth sailing, but still a relief. My kids are now about to turn 14 and 12 and still have their Mum. Moreover, I’m still an active part of their lives, even if I’ve had five years off work. I am so very thankful to be here. Yet, there are still times, especially when the cough flares up, that I get fed up. After all, I’m human, not invincible.

With the New Year, I’ve been rethinking my status quo and wondering how to get back into some paid work, while coughing like a mongrel dog and feeling dreadful in so many ways, that it’s tempting to sink underneath the waves and give up.

Prior to chemo, I had been employed as the Marketing Manager for a local IT Company one to two days a week. I’d also been working towards a motivational book about turning your mountain around. I had it all planned out. What had started out with a rather feeble New Year’s resolution to vaguely improve my heath through green smoothies, evolved into a surprisingly productive year. I lost 10 kilos, took up the violin and performed at the end of year concert, started the blog and tackled all sort of challenges at an adventure camp run by Muscular Dystrophy NSW…quad bike riding, sand boarding, para-sailing. It was incredible. I’d pulled off so many things I’d never thought possible, and was almost on top of the world.

 

All of these breakthroughs and successes were definitely book worthy and I thought my story could encourage others experiencing the hard knocks of fate, to give living a go. Living with two debilitating, life-threatening medical conditions and consequent disabilities, I was proof that it was possible to carpe diem seize the day even through times of serious adversity. However, my story wasn’t going to end there. The icing on the cake, which I intended to be the finale of the book, was skiing down Perisher’s Front Valley, in effect, turning my mountain around. Yahoo!

Rowena skiing downhill Fri

Skiing in Perisher. You can see my instructor, Tom, in the background…the wind beneath my wings. I went as a member of the Disabled Winter Sports’ Association.

That was the plan. However, while I triumphantly skied down Front Valley, my “victory” didn’t match my expectations. Rather than the exhilaration of triumph, I felt my gut sink with unbridled terror as I perched precariously over the edge, with a huge drop off down the slope to the village below. I felt like fleeing straight back to the safety of the “magic carpet”. However, I had my ski instructor with me and Tom went backwards down the steep start and held my hands to ease me down. By the time I finally reached the bottom after a few spills, I was more relieved than jubilant and I was just glad it was over.

However, the story doesn’t end there. Triumph soon did a terrifying back flip, and even before we left Perisher, I’d developed a nasty chest infection, which turned into life threatening pneumonia. Indeed, one night in between coughing bouts, I actually stopped breathing.

rowena piano

Playing Moonlight Sonata after chemo.

At this point, I also found out that the auto-immune disease was in a serious flare and was attacking my lungs. The Institial Lung Disease had become active and I had marked fibrosis in my lungs. Moreover, the report on my lungs read like the contents of a vacuum cleaner bag…ground glass, honeycomb. I was actually surprised there wasn’t any dog hair in there. Anyway, they started me on chemo (cyclophosphamide) a week before Christmas 2012 and I’ve got to say, I didn’t expect to be alive for Christmas 2017. I am a living, breathing miracle, which has been a comprehensive and intensive team effort.

As you could imagine, pneumonia and chemo weren’t the grand finale I’d planned for the book and the book is still on hold as I wrestle with what it really means to be a survivor, grappling with my numerous battle scars and LIVE on. I don’t merely want to exist.

This isn’t something I think about all the time. However, with the new year, I’ve revisited all of this. I’m still wrestling with THE COUGH, while also trying to get back to some kind of meaningful paid work. The two of them are looking very incompatible at the moment, but surely I can find something?

Pursuing this question further requires me to accept my weaknesses, but also to acknowledge and embrace my strengths. Know that I am not a dud. Rather, I’m human. We all make mistakes and have strengths and weaknesses. Of course, that’s something I would say with conviction to anyone else, but I struggle to find that in myself.

So, I guess this takes me to George Bernard Shaw:

“Life is not meant to be easy, my child but take courage: it can be delightful.”

When you’ve experienced adversity, how have you kept your head above water? Please leave your thoughts in the comments and links through to any posts.

Best wishes,

Rowena

This post was published on Smorgasbord – Variety is the Spice of Life.

Weekend Coffee Share 21st January, 2018.

Welcome to Another Weekend Coffee Share!

You’d better hold your horses and psych yourself up. We’re not having coffee this week. Rather, we’re piling into the dog mobile and heading off to Dog Beach. I hope you’re feeling brave, because you’re taking our 6 month old Border Collie x kelpie pups, Zac and Rosie. They have such raw energy, that you could end up flying along behind them like a kite. On the upside, just think of all the energy you’ll burn off!  Meanwhile, I’ll take Lady, but I will give you a hand.

dog beach zoom

Dog Beach: my daughter inscribed this with a stick in the sand.

How has your week been? I hope you’ve had a great one.

This week’s been a bit of a struggle for me in some ways. I’ve still been battling The Cough, which I’ve now christened “Fergus”. No offence to anyone named Fergus, but it sort of sounds like wheezy creepings within my lungs. I went back to the doctor again and am on another round or two of antibiotics, but am finally on the mend. Enough to shout a yahoo, but not quite enough to leap in the air yet.

As you could well understand yourselves, something like a cough or cold which is chronically annoying but not necessarily serious, can still be a pain in the neck. Moreover, you still feel you have to keep doing life and stuff, while feeling entitled to your own private nurse and a good strong dose of TLC. I also want to be a part of life and do things with my husband kids, family and friends and not be shut away in the house all the time. So, I feel like I’ve swallowed Dr Dolittle’s classic Push-Me-Pull-You and it’s been hard to juggle it all.

Image result for Dr Dolittle's classic Pushmepullyou

Both of the kids have been away at different camps this week. Our daughter was on a Young Carers Camp at Camp Breakaway and our son has been away with scouts. While you’d think this would’ve given me a breather, I still had to provide some transport and our daughter had to pop back for a dance workshop. So, there was more driving. Packing for Scouts, was also an ordeal. They provide such easy to follow check lists, and yet the kids inevitably leave something behind at both ends. Trying to get His Lordship’s bag packed was also like pulling teeth. Indeed, I’ve seen him more compliant going to the dentist.

As they say, never work with children or animals.

Geoff & Lady 20 Jan 2017

Indeed, it was quite a deal piling all three dogs in the dog mobile with three humans tonight. The pups were so exuberant. Zac even ran over the rocks at a sprint, and I could see how these dogs could walk over the backs of sheep. They’re unstoppable. Meanwhile, Lady has this way of surruptitiously wandering off, and at one point was heading for the sand dunes, which are known to house rabbits and  other critters. This area runs up to the road and as Lady has zero traffic sense, Geoff had to bolt after her. Meanwhile, Rosie started to follow Lady. Humph! Out came the leads!

Amelia & pups dusk Jan 20 2018

 

By the way, I almost forgot to mention that after dropping my daughter back at camp, I went on a bit of a detour. Indeed, I am the Detour Queen. The camp was on the coast about two hours North of Sydney and there are some wonderful beaches up there. So, I puttered down to Budgewoi where I had half a dozen battered prawns for lunch and then spotted a sign for Norah Head. My friend’s family had a holiday house there when I was at school, and I still remember a few very special birthdays in the sand dunes. Those sand dunes were revegetated years ago and have in effect disappeared. However, the lighthouse is still standing. No one’s buried that along with my youth.

Norah Head Lighthouse

Norah Head Lighthouse, NSW Central Coast, Australia. 

With school going back in a week, I’ve been working desperately hard to get the house sorted out. However, progress took a huge step back in a sense today when we finally got the Summer clothes down from the roof. I have been known to frequent the local opportunity (or thrift) shops on a rather regular basis and have spotted more than the odd bargain, especially when it comes to my daughter. She could become a jetsetter and have what looks like a year’s worth of outfits without spending a cent. However, her wardrobe couldn’t possibly house all of this, so we’re having to do a cull and I’m thinking garage sale. Meanwhile a Mt Everest or two of clothes is choking up the loungeroom and my husband’s peering through fabric and crates to watch the cricket.

It’s become very clear that never of us need to go clothes shopping for a very, very long time. On the other hand, there’s some scope for me in the shoe department, especially after Rosie ate my favourite shoe for lunch. They’re nothing glam. Rather, they’re shoes for people who work on their feet or need added support. Or what my daughter condescending refers to as “granny shoes”. But they worked for me and sensible shoes is where I’m at these days.

Speaking about fashion, it’s an exceptionally rare moment that I even think of fashion. However, I was getting to the point of shooting The Cough, and spotted a very glamorous Vogue magazine and decided buy it and stick my face over the top. I haven’t gotten around to that yet but here’s the photo and perhaps it can ignite a few dreams of your own. I’m getting more and more interested in fantasy these days. Reality is over-rated.

Reality is only limited by your imagination!

As I’ve been reading back over this coffee share, I’ve detected a note of melancholy and wondered whether I should zoop it a bit bit. Add a bit of razzle dazzle and make it more positive. But, we don’t have to be all happy happy joy joy all the time and sometimes we do just need to move into what I’ll call a minor key, before we can reach the high note.

So, how was your week? I hope you’ve had a good one. Please let me know what you’ve been up to in the comments. 

This has been another Weekend Coffee Share, hosted by Eclectic Alli ,  Here’s the Linky Come on and join in!  We’d love to have you along!

Weekend Coffee Share 7th January, 2018

Welcome to Another Weekend Coffee Share & A Belated Happy New Year!

Today, I’m not even going to ask if you’d like a glass of water. You need it. While the official temperature outside is 35°C /95°F, I swear they’re taking the temperature in the shade because it’s a furnace outside and our poor air-conditioner is sounding like a train struggling to cross Mt Everest…”I think I can…I know I can’t!”

How was your week? I hope you’ve had a good one and a great start to the New Year.

My week could best be described as “The Cough”. I don’t know what possessed The Cough to use my lungs as a BnB, but surely there’s somebody closer to the beach who could have provided ocean views? Our place is a few blocks back. An easy stroll. That said, the cough is so virulent it could reach the beach from our place in an instant. BTW, I”m not exactly sure what’s causing The Cough. I took some precautionary antibiotics, but I have fibrosis in my lungs, a “complication” from the auto-immune disease. I only have 60% lung capacity as a rule so the slightest irritation to the lungs, is more noticeable and potentially serious. meanwhile, the dogs are complaining because I’m a better barker. I’m also thinking the antiobiotics might’ve upset the balance in my stomach and the cough is more about heartburn.

Anyway, enough about the Cough. Coughs are like serial killers. They’re publicity craving sponges, and you don’t want to fuel their narcissistic demands.

Just before Christmas, Geoff and the kids drove up to Queensland for a family wedding and I stayed at home to tend to the coughs and mind the dogs. It was the first time since we’ve been dating that he’s visited his family up North without me, and as much as I wished I’d been there, I also think it was good for them to spend time with Geoff’s people without me there as a distraction for a change.

As a special treat, Geoff took the kids to  Warner Bros Movie World on the Gold Coast with their cousins. Apparently, it’s the Warner Bros version of Disneyland. Not having been there, I’m harranging the rest of the family for details. They, on the other hand, are more interested in playing Minecraft. Don’t they understand that it’s feeding time at the blog, and that they have a moral and social obligation to cough up! Not ust to make their mother happy, but also to promote Australia and encourage more visitors.  Obviously, not. Yet, after much heavy-handling, I did manage to extract a few spartan details about riding the Scooby’s Spooky Rollercoaster. They were telling me about sharp twists and turns, which would have you holding onto onto your false teeth. Then, they tell me about speeding down a hill backwards,  which would have my own teeth falling out. It took quite a lot of prodding, to actually find out that the Spooky Rollercoaster is an indoor ride, and is actually in the dark. Yikes! However, theat was not enough to deter Geoff and our son from going on the DC Rivals Hypercoaster. That either takes courage or insanity and both could apply here.

They also went to the Macadamia Castle at Knockrow, located in the hinterland behind Byron Bay. I just happened to call them while they were there feasting on pancakes at the cafe. I had a bit of a moment then, because we usually go there as a family and we’ve been taking the kids there for around ten years. Some years when we’ve had a few trips up, we’ve gotten to know the keepers and had such a personal experience of the place. Even though the kids are getting older, they’re not too older for the Castle and still loved interacting with the animals.

Speaking of animals, I did hear that they had a few close encounters with snakes at the farm. I prefer not to think about that, although while I’m there I try to remember to watch where I’m walking. Snakes are far from tourist hype in these parts and not uncommon.

Without the family at home and having a break from all our activities, I’ve been amazed at how much I’ve got done at home. While it’s very boring to say you spent the Christmas holidays cleaning the house when you could be at the beach, starting a new year has inspired, dare I say driven me, to sort out the accumulating piles around the house and return to bare earth. With the rest of the family out of harm’s way, I booked a council clean-up and 6 bags of rubbish went along with quite a stash of miscellania. It felt so good. Yet, it was only the beginning.

However, my time alone at home wasn’t all work. I also got stuck into some reading. I’ve been reading a gripping trilogy by Brendan Graham, who also wrote the lyrics for You Raise Me Up. I’d met Graham at the Irish Famine Commemoration Day in Sydney and he came across as a warm, gentle man. Through his books, I’ve appreciated that he’s also a thinker. A man who asks questions and doesn’t just accept the status quo, which struck a chord with me. If you are a writer interested in the source of creative inspiration, I recommend you read this interview.

messy

I also managed to finish Tim Harford’s: Messy: How to be Creative & Resilient in a Tidy-Minded World. I’m actually disgusted with myself that it’s taken me so long to finish what I consider to be one of the best and most useful books I’ve ever read. Somehow, I stopped with about 30 pages to go and didn’t get back to it. Part of the reason, is that I haven’t caught the train for awhile, and that’s my preferred reading location. Along with that, there’s also been all the end of year stuff, which has kept me right away from my teetering book pile in general.

Lastly, I’ve started reading Harry Potter. My daughter’s been badgering me to read Harry Potter for the last month and I keep promising and yet haven’t managed to open the cover. I’m not sure why I’ve been resisting Harry Potter all this time. When it first came out, there was very strong opposition in some Christian circles and that definnitely played a part. In that regard, reading Harry Potter felt tabou, very much like reading Lady Chatterley’s Lover back in the day. However, as a writer, it’s also important to read and analyze very successful literature to either accept or reject its influence in my own writing. I also wasn’t sure that I’d like Harry Potter and reading it strangely felt like a chore. I don’t know why because millions upon millions of readers have loved it. Yet, I’m not sure that I would necessarily relate to all these millions of readers and clearly, they are not me. I have my own opinions, likes and dislikes and I’m anything but a conformist or sheep. As the blog title states: “I’m beyond the flow.”

Harry Potter is quite different to what I’d expected with complex characterization and moves at a delightful, fast-pace where you’re constantly turning pages and looking forward to the next one. What I haven’t picked up through my casual glances at the movie, was that Harry spent his early childhood as the bullied underdog, living with his aunt, uncle and horrid cousin, when within Hogwarts circle, he was revered as a a hero. This, at least to me, adds quite an interesting dimension to the plot. Ramps it up. I guess this plot, or what I’ve uncovered of it so far, is about Harry finding himself, when everyone around him already knows. That is intriguing because most of us would like to think we know ourselves better than other people, but i guess that isn’t always the case.

Given the extreme heat and the cough, I’ve also been getting stuck into my research. This moves around a bit, but I’ve made great headway. While I’m still researching the Irish Famine Orphan Girls from the Midleton Workhouse who came out to Australia, I ended up revisiting the McNamara’s from County Clare and moving back onto the Johnston’s. The Johnstons have been a gripping area of research. My ancestors on that front were whiskey distillers on the island of Islay, Scotland and owned Tallant Distillery. The brother and his son, Donald and Alexander Johnston, went on to found Laphroaig Distillery. I’ve never been to Islay, but I did find a fantastic blog which has almost taken me there and I’m grateful for that. I we’re always saying it’s a small world, but it’s not so small when you’re trying to visit somewhere on the other side of the globe and trying to finance it.

By the way, while we’ve been chatting, the temperature outside has soared. The Ashes Cricket test is on TV and they’re saying it’s now 41°C/ 106°F in the shade and 50°C on the field and the pitch temp is 55°C. Personally, I reckon the cricket should be called off in weather like this, but it appears the cricketers are made of tougher stuff than I. (Humph! You could say that. If a red cricket ball was heading my direction, I’d duck. There’s now way I’d even think about catching any cricket ball, let alone one moving that fast. BTW, the Aussies are winning but it looks like England is trying to stretch it out for a draw.

That’s the full extent of my knowledge of the cricket.

Meanwhile, the dogs are all enjoying the air-conditioning and snoring away. We’ve ramped their training up a notch now that Geoff and the kids are home and have been training them on the lead. Thy need to be able to walk on a loose lead without using interventions like a Halti collar which has been our go to in the past. Perhaps I’m deluded, but I’m thinking we can harness puppy power and produce a pair of easy walkers.

Lastly, I know we don’t usually advertise the unwanted critters we find lurking in our homes, but last night Geoff finally caught the rat which has managed to elude multiple traps and three dogs. Lady’s been pretty keen to hunt it down, but unfortunately couldn’t climb up the bookshelf. The pups ran away and hid and I’m not going to dob myself in on that front. Dealing with the semi-dead rat was definitely a “Geoff job”.

Well, that’s enough from me for now. How was your week? I’d love to hear from you!

This has been another Weekend Coffee Share. Eclectic Alli is hosting a coffee share.  This week’s share is here. and the link up is here. Come on and join in!  We’d love to have you along!

xx Rowena

PS: I just came across this very funny post about the Great Australian Emu War: https://wordpress.com/read/feeds/1699685/posts/1725886161

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.

DSC_6360

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.