Miscellaneous Mutterings

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

M is for Monkey

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

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

M is for Monster

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

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

Mummy

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

Next.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We just need to believe.

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

Indeed, it could even be motivational.

xx Rowena

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

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

When The New Yorker Came To Sydney.

Last week, I was absolutely stoked when I found a copy of the New Yorker when I took our daughter to her doctor’s appointment, instead of the usual trashy magazines. For a New Yorker, this would be hardly surprising but when you’re in Sydney, Australia, finding a copy of The New Yorker is a rare treat. It was time to celebrate!

Who hasn’t experienced the joy of being camped at the doctor’s waiting so long you’re putting down roots and all you have is a stack of trashy magazines for entertainment?  I’m sure the world over there are those familiar looking piles of trashy magazines, which should have been pulped long before publication. You know the sort of stuff I’m talking about where those flashy, glossy pages are smothered in the latest “Kardashian Krisis” and other celebrity crap. If you’re really lucky, there might also be some token National Geographics but don’t hold your breath!!

Knowing what to expect, I always BYO. Whenever I head down to Sydney for my specialist appointments, I usually take a choice of two books, a handful of pens and a writing pad to capture fleeting threads of inspiration. I must say that on some occasions, I’ve been bunkering down to write what seems like my entire life story, while I wait. It is nothing to wait for 1-2 hours for an appointment and indeed, there is a sign telling you to allow half a day. All this endless interminable waiting is all for a fleeting 15-30 minute appointment. While this might sound pretty dreadful, especially if you are seeing multiple specialists, it is what it is. I see my specialists for free so I’m not complaining. I just come prepared.

However, I can sure pick the newbies turning various shades of red and emitting shots of steam through their beetroot red ears while they openly complain that “being sick is a full time job”. Most of them could well be transferred to Emergency for immediate anger management. That said, being diagnosed with a serious disease is hard enough. Being forced to spend those precious, rapidly ticking away last minutes of your imminently evaporating life in the bland boredom of a doctor’s waiting room staring at white walls camouflaged by fancy prints, is enough to push even the most mild-mannered Clark Kent over the edge!! Trust me! I know!

I don’t think hospital was on Dr Suess’s list.

Of course, nobody includes being stuck in a doctor’s waiting room on their bucket list when they have 24 hours to live! Not on your life!!!

However, all my expectations of waiting room literature were turned around last week when I took our daughter to her specialist appointment. Much to my delighted amazement, I found a copy of The New Yorker on the very top of the pile. Wow! I was thrilled. Indeed, “I had chills.  They’re multiplying and I’m losing control…” https://www.youtube.com/watch?v=J01QPxZFlw4

A cartoon from the New Yorker, which I photographed on my phone.

The New Yorker is a rare breed in Australia so I was almost thankful that the doctor was late. I was glued to the pages and really had to peel myself away. Indeed, I was even taking photos of the funnies with my phone and seriously hoping the doctor didn’t catch me in the act. Of course, I was doing this in the name of serious journalism…snapping gourmet morsels to feed my blog!

The Statue of Liberty welcomes this adventurous Aussie Dreamer to the Big Apple.

For a few fantastic moments there, I felt myself being transported over the Pacific Ocean touching down for a refueling stopover in Hawaii to meet Max the Dog and indulge in a bit of Hula. Then, I was on a bit of a stop start journey through LA, New Orleans, Washington and finally touching down in New York in such a manner that I didn’t get my Wonder Woman cape caught on one of those spiky bits on the Statue of Liberty.

Just as well I didn’t start singing and dancing in the waiting room! I have absolutely no shame!

I’m in New York and I can even hear Frank Sinatra singing New York New York: https://www.youtube.com/watch?v=K-0nNWOKK2Q

Though still sitting in the waiting room, I’m a  real New Yorker or at least a New Yorker with an Australian accent. Well, make that a sedated New Yorker with an Australian accent. Being a rather slow walker who doesn’t wake up before midday without intravenous caffeine infusions, I’d look like a comatose zombie among the fast-paced New Yorkers.

But then the dream shatters…

The door swings open and all my fantasies of New York are put on hold. The doctor is ready and it’s now time to discuss why my daughter doesn’t eat.

Humph! No more New York…New York…New York!

I’ve touched down with a painful thump and it’s time for a brutal reality check!!

New York…LA,Honolulu,Sydney, Wahroonga….Can’t keep the doctor waiting!

The door closes.

Have you ever been to New York and have any stories to tell? I am learning the fine art of living vicariously.

xx Rowena

 

Seeds for the New Year

January 2, 2014

Seeds in anybody’s language spell hope, new beginnings…the start of a dream but for me there was an added resonance.

Yesterday, I received the ultimate New Year’s gift.

It wasn’t expensive or luxurious.

In fact, it was deceptively simple and it cost its giver nothing.

Not even a cent.

“How is this so?” I hear you ask in a very Professor Julius Sumner Miller tone of voice. Perhaps, you haven’t heard of him but he used to host a science show called “How is it so?” and he also did an ad for Cadbury Dairy Milk Chocolate where he managed to get a boiled egg inside a milk bottle. It was pretty impressive stuff.

This was in the days before a more recent Australian politician, Pauline Hanson, made the phrase: “Please explain” legendary.

Well, I am overflowing with explanations.

The kids and I were visiting some friends. All the kids were playing. I’d brought my friends some of my White Chocolate Rocky Road and she’d given me a slice of her Wild Strawberry Cheesecake, which was incredibly lush and made completely without additives and nasty chemicals. Wow! It was exceptionally creamy and I must admit I was feeling rather spoilt. This is the sort of thing you usually have to go to a café or gourmet bakery to find….very, very nice. My friend also made me a cup of tea and there is always something particularly healing and soothing about someone else making you a cup of tea, especially when you are a busy Mum and always seemingly looking after everybody else. She was an angel.

While the kids were bouncing round in the pool, I couldn’t help notice all their veggies. They grow their own tomatoes, beans, beetroot and more in garden beds raised above the ground. All these veggies, which could almost amount to a small market garden, are growing slightly more than a stone’s throw away from the beach on a standard suburban block. Quite a miracle really except you can see this garden is very well-maintained and cared for. Loved.
I was incredibly impressed and inspired.

Not that I looked at their set-up thinking: “if they could do it, I could do it”. Not on your life!!! However,  I did consider that just maybe we could manage one tub…a veggie patch on a smaller scale and actually grow something! The rest of our garden might be derelict but perhaps we could manage to look after this small patch of soil and develop our own backyard “oasis”.

Actually producing veggies we could eat would be nice but that would be more of a by-product. I was equally interested in the gardening experience in itself and all that excitement that comes with planting seeds and waiting, waiting, waiting for that very first green shoot to finally poke its head through the soil to greet the sun and a whole lot of eager watching eyes. The kids would love it. I remembered picking beans straight from my grandfather’s vine and just how amazing that was. As a child, it was a veritable miracle!

Moreover, being somewhat of a life-lesson addict, I thought the routine of having to water our plants was going to be good for the kids as well. Routine, responsibility, nurturing…these are all important life skills. Things perhaps you could learn from books but I really doubted you could learn them from playing Minecraft, even if you do get to grow virtual crops!  They need life experience as well. To do things with their hands aside from pressing buttons all day.

There was only one drawback to my veggie garden scheme.

Me!

Although I’ve always loved gardening and used to have quite a green thumb and have grown my own herbs, bulbs etc even in our exceptionally barren and sandy beach soil, I’m not good at keeping up the watering and so many, many plants have died from thirst.

In other words, I’ve become a plant killer.

Now, being a loving, caring and nurturing person at heart, I’ve had more than a little guilt over this and stopped buying plants until we could get the watering system going again. We’ve been on drought status and water-restrictions for many years but now we have no excuse. Water restrictions have eased and while we still need to be responsible about our water consumption and I do tend to re-use water at home, we can actually water our plants.

However, I have a very bad track record. It all starts out alright but slowly but surely the watering tapers off and without rain, we all know what that means.

But I am always a firm believer in change. Personal growth. After all, we are fluid, flexible beings. We’re not set in stone.

So after expressing my interest in starting our own veggie patch, my friend gave me a handful of dried beans filled with seeds with the potential to create our very own bean plantation in our small, yet to be constructed, backyard tub.

I carefully, put the beans in my handbag trying to think of the right words to tell Geoff, ask Geoff, to build our veggie patch. It wasn’t exactly the best timing but it was something we could do together as a family and I wanted the kids to learn all about gardening, soil, watering, worms…our environment. We have had a worm farm for 4 years and so this would just be an extension of that and indeed it would be a great use of all our juicy, fertile worm dirt. It no longer go to waste just sitting at the bottom of the tub. We would convert it to lush, fresh produce oozing with vitamins and none of the horrible chemicals. Perfection, in other words.

But as I said, this isn’t exactly the best time to launch into new gardening project even a small-scale because we are currently struggling to manage the everyday stuff and when you consider Maslow’s Hierarchy of Needs, growing your own veggies is more of a luxury not an act of survival. At least, when you live walking distance to at least three huge supermarkets and a great fruit and veg shop, it is.

I guess this is where I really have to stop being cryptic and answer your “please explain”.

You see, I haven’t really explained or updated my health status for some time. Even though I am fairly open about my life, I have struggled to find the words and it is difficult to tell people when things get worse, when I have a setback because I know that even people I haven’t met in this weirdly intimate world of blogging, care about me.  We are only human and you don’t need to meet in person to be a friend, to love or to care. My situation is also quite emotionally charged because I have young kids and it’s not nice having to think about children potentially growing up without their Mum but that is what we live with. We are conscious of this as a possibility as it is for any one of us. We are just more conscious of this possibility than others and can actually take steps and plan ahead. Not for the eventuality but the possibility. While this shadow lurks around,it also enables us to capre diem seize the day and squeeze the marrow out of life. We have fun!

Anyway, a few months ago, I developed pneumonia. This wasn’t as bad as pneumonia gets but it was pretty awful and I spent 3 weeks in bed and was coughing so badly that I pulled muscles in my stomach. That’s never happened before and that was really scary and it hurt. We put the kids in before and after school care for 2 weeks straight…something we’ve never done before. It was a big deal. Things were pretty serious and we were considering hospital but there was also the risk of catching something else in there so Geoff wanted to keep me at home.

My GP sent me off to get lung x-rays and these showed some issues so I went for an updated CT Scan. I’d had my last CT scan two years ago and it had shown mild institial lung disease, which is a form of fibrosis. This wasn’t considered a problem at the time but they started monitoring things more closely. This is a nasty disease and it kills. But treatment is available and of course, works better when you catch it early, which we have. Monday I saw my rheumatologist. Tuesday his secretary called and Thursday I started chemo along with transfusions of methyl prednisone, which has all the reverse side-effects of the chemo and makes you really bouncy, euphoric and unable to sleep. It’s like buzz! Buzz! Buzz! All this steps are designed to reduce inflammation and gain control of my disease.

This situation may not be ideal but I am certainly in the best position to mount a counter offensive and I am also looking at other ways of improving my lungs such as swimming and playing the recorder.

Of course, the side-effects of the chemo can include losing my hair. I almost had to laugh at that because after taking 6 years to finally get my hair cut off and being really pleased with the results, now I was being threatened with losing the lot. 90% of me didn’t care as I had no doubt that losing my hair was nothing compared to saving my lungs. I need to breathe. But at the same time there was still a residual “growl”. I figured that it would be just my luck for my hair to fall out just when I’ve got it all sorted.” I really do love my new hair.

So far so good. My hair has stayed put and I’ve had none of the expected side-effects from the chemo aside from fatigue. I have a few buzzy days after my treatments from the prednisone and then a few days feeling wasted and then I’m back on deck for the next one.

While chemo might and I guess certainly does sound depressing, right from the start I have been telling myself that it is only six weeks. Being in the lead up to Christmas, I thought of the kids countain down the number of sleeps until Santa arrived and I would do the same…6,5,4,3,2,1…blast off!

This really helped me face my first treatment and now that the side-effects are nowhere near as bad as I’d expected, the countdown isn’t really an issue. I had my third treatment today so now I’m officially halfway. It’s all been going so quickly.I also made jokes about getting chemo for Christmas, which in reality is the best Christmas present I could have. Treatment and hope. These are a gift.

Yet, to be perfectly honest with you, the important thing isn’t just surviving chemo and getting through.

What matters is that it works. That my auto-immune disease responds and goes back into its cupboard and doesn’t come out.

A rainbow of hope.

That’s the real waiting game. My cough has dramatically improved. Yet, as positive as I am, I still have doubts. Just like the seeds of faith, the seeds of doubt can also germinate and grow like crazy…the weeds in the garden of hope.

That’s where my ultimate New Year’s Day present comes in…those bean seeds.

It didn’t hit me straight away but those seeds were almost like a promise ….a hope. I will get better. Those seeds are offering me the vision of a brand new life and healing…renewal. I cling to that hope and pray!

Now, I don’t know that for sure. My disease has been pretty resistant in the past but it has also responded…eventually. I like the science behind my new treatment. I will also be treated with a drug called rituximab after the chemo and it is a much more targeted therapy without the toxicity of the chemo. It really could be the treatment that will ultimately work for me and you can only access it after other avenues have failed due to the cost.

So it could be that while this setback is serious, it could well be that coldest time of night before dawn. That this new treatment should and could be the solution!

That is our prayer and our hope.

I would love to receive any words of encouragement or stories of overcoming the odds. It would mean the world to me.

Love & best wishes,
Rowena xx

I was given a handful of dreid golden beans filled with seeds….the makings of our new veggie patch.

Poem – Mummy

The steadfast oak

stands strong and proud –

an omnipresent silhouette-

in the local park.

 

Her roots spread deep

throughout the earth.

She’s rock solid.

A survivor.

Victorious over much adversity:

drought, wars, storms,

the angst of love gone wrong.

I    Love     u

is still carved in her bark,

long after the lovers have gone.

 

Children climb.

Lorikeets, magpies, noisy minors

all chatter, sing and squawk

in her strong, muscular  branches.

Possums play ping pong

long after dark.

A myriad of bugs

march, flutter and buzz

through her crisp, green leaves.

 

Bursting with acorns,

she is the tree of life

carrying the world

on her shoulders,

while cheerfully smiling

up at the sun.

 2.

It was neither autumn,

winter,

nor the time for old age.

Somehow,

the rot just set in,

eating away all her strength.

All floppy jalopy

with a rubber trunk,

she could barely stand up.

Yearned to become a chair.

Rest.

Fall asleep.

 

But an oak is still an oak.

Children climbed her hollow branches

at their peril.

The lorikeets, magpies, noisy minors

still sang oblivious to her cries.

Possums still played ping pong after dark,

although fatigue smothered her

like a fatal shroud.

The bugs never, ever stopped.

As much as she tried

to kiss them goodnight,

they couldn’t see

and she couldn’t speak.

Slowly but surely

the world was sinking.

About to fall off

those once firm shoulders

and crack like a fragile egg.

 

Splat!

 

3.

 

But then the gardener came.

The gardener came with x-ray eyes

somehow sensing her weakness,

despite her strength.

He knew the tree.

Cell by cell,

he painstakingly

restored her soul,

making her whole.

 

Strong, scarred

and a little crooked,

the oak again stands tall

carrying the world

on her shoulders,

smiling at the sun…

the tree of life.

 

15 & 16^th August, 2013

 

Reflections…

 I have been feeling tired and rundown lately and yet am expected to keep going. The kids jump all over me with no idea that I am struggling to stand up. That I’m stumbling. Perhaps, that’s my own fault. I cover my tracks too well.

 

When it came to writing this poem, initially I wanted all the critters to get out of the tree. Give the tree a break. But then I realised that the tree loved being part of that community. That they gave her life. I realised that I push myself to spend time with my kids, to be a vibrant and active part of our community and this connection gives me life, even if it does sometimes feel a bit too much. I struggle to pick the kids up from school most afternoons because I love to be involved, catch up with my friends and fellow parents and be an active part of the school. As much as I struggle to do this, I would feel so cut off if I didn’t.

 

I hope this poem captures the tension between being loved and part of community and also the weight of illness and disability which can rob you of these relationships and experiencing the intensity of close relationships. This is where equipment like wheelchairs and walking frames facilitate relationships and connection. I don’t use these and I currently end up staying home and in bed when my mobility deteriorates. In many ways, I become cut off.

 

This poem also leads towards a cure and being healed, which remains a bit of wishful thinking on my part. I was excellent only a few weeks ago but dropped my prednisone and am feeling weak at the moment.

Anyway, these are just a few reflections.

 

xx Rowena