Tag Archives: illness

Explorations with Google.

When considering great explorers, I usually think of intrepid adventurers who have “discovered” new continents, crossed frontiers and ventured into wild, uncharted places on this planet. People like Christopher Columbus, Captain Cook, Sir Edmund Hillary as well as adventurers like Dick Smith and Jessica Watson…  the youngest person to sail solo around the world.

Yet, thinkers are also great explorers and we also uncover new territory. Or, as is often the case, we build bridges across distinct islands and create new nations of thought.

Keats expressed such intellectual discovery beautifully in On First Looking into Chapman’s Homer:

…Yet did I never breathe its pure serene

Till I heard Chapman speak out loud and bold:

Then felt I like some watcher of the skies

When a new planet swims into his ken…

I don’t know if anyone else would consider me a great thinker. I’m a blogger and a very low-ranking blogger at that. Yet, I also explore foreign territory in my blogs and general writing, attempting to create new islands of thought or alternative ways of doing things.

Google has become an integral part of this process.

Google not only facilitates my research. It also takes me off on fresh adventures. You know how it is. You Google one thing and something else shows up in the search results and you end up pursuing a completely different line of thought.  Before you know it, you are a few mental light years away from where you started out and it’s all very, very exciting stuff! You’re mind is on fire!

Although it might be online, isn’t this is what learning is all about… going somewhere new and investigating, asking questions and sussing everything out? After all, isn’t this how so many of history’s greatest discoveries were made… by seemingly wandering off on a tangent, getting lost and then suddenly the light bulb goes off? Or, perhaps by putting a few random thoughts together creating something new and world-changing?

At the very least, Google allows you to check something out and reach your own conclusions.

Only yesterday, someone was telling me about a huge island of plastic rubbish in the Pacific Ocean. Now, I consider myself fairly well read with a keen interest in the environment but I had never heard of this island before. Thanks to Google, I was able to come home and not only read about it but I could even watch a documentary online. This thing (and believe me it really does sound like a “thing”) is called the “Great Pacific Garbage Patch” or the “trash vortex” and while you can’t really spot it on Google maps, it is located in an area called the “North Pacific gyre” – a vortex where the ocean circulates slowly because of little wind and extreme high pressure systems. Due to these ocean currents, it seems that plastic rubbish pools here. As with most things scientific, there is considerable debate about this so-called island, which is also described perhaps more accurately as a plastic “soup”.  Thanks to Google, I was able to read numerous opinions on the subject and formulate a reasonably well-informed opinion without a science degree or PhD, all from the comfort of my own home.

Yesterday, thanks to Google, I was a budding “scientist”. Today, I was in much more familiar territory…poetry.

I recently bought some antique sheet music on eBay. One of the pieces was called My Heart is a Silent Violin. I noticed that the words were actually a poem by Eric Von der Goltz JR. It is a very romantic piece and being a lover of all things violin at the moment, I Googled the poem. Halfway down the list, there was a link to The Old Violin – The Touch of the Masters Hand . The link mentioned that it had been his late father’s favourite poem. As a poet and lover of poetry, I was intrigued about what made this particular poem, out of all the millions of poems which have ever been written, that one in a million million… so I clicked through.

I wasn’t disappointed. I was very moved by this poem, which talked about how an old violin was being auctioned. At first, the auctioneer was struggling to get more than a couple of dollars for it. However, a master violinist stepped up and played the violin beautifully and suddenly the price jumped up into the thousands. It is a religious poem and God is the Master who appreciates and brings out the best in us. However, I also saw an application in how we treat people who are different, or at least different from us and often dismiss them.

We all deserve to be given a chance to shine with our own unique beauty.

The humble violinist

The humble violinist

As a violinist and yes I know I’m only a beginner violinist but a violinist is a violinist…I also viewed this poem from the perspective of the player, the violinist and not just the violin.

Being so moved by the poem, I wanted to find out more about the poem and its author, Myra Brooks Welsh. http://www.aboutonehandtyping.com/storiesfolder/master.html

Back to Google.

Yet again, Google didn’t disappoint. I found a brief biography of Myra Brooks Welsh written by Lilly Walters, who has her own story of triumphing over adversity. Lilly Walters, whose story appeared in Chicken Soup for the Soul 2nd Helpings, was inspired by the poem after she lost most of her hand in a farming accident as a child. Her mother was terribly distraught at the time but she was inspired to help her daughter learn how to type and Lilly went on to share these strategies with others. You can read Lilly’s story here: http://www.aboutonehandtyping.com/storiesfolder/angels.html

Science, poetry and then Google took me into the world of cricket…an exceptionally foreign land!

We have been watching the Sydney Cricket Test or should I say we’ve had it on in the background today. It’s a very hot, very sunny languid day outside and we are pretty much huddled indoors. We are having a day of rest, a non-day or what is often referred to as a pyjama day, although we have managed to get dressed. I must also say that the dog is walking around looking quite pleased that he’s lost his fur coat and has been spotted actually lying in the sun at times.

Anyway, the Cricket Show had been interviewing cricket legend and commentator Richie Benaud. I am not into cricket at all. In fact, I have historically detested watching the cricket in the way that only a big sister with an obsessed little brother could. Wars were fought not over who could control the remote but over who could keep hold of the on and off switch as well as the dial which manually changed the channels. It was such a different era!!

Watching Richie Benaud doing the cricket these days is like seeing a history in motion. Born in 1930, he’s now 82 years old and he actually retired from playing cricket way back in 1964, five years before I was even born! He has personally experienced such a vast spread of cricket history that even I find him interesting, just like I enjoyed hearing my grandparents talk about the olden days.

I have grown up these days and while I don’t watch the cricket myself, I no longer mind or even notice when it’s switched on and Geoff will often have it playing in the background at home. To me, cricket is still about Dennis Lillee, Rod Marsh and Kim Hughes and the West Indies were the ones to beat. Lillee retired in 1984 (Thanks again, Google!) That gives you some idea of just how long it’s been since I’ve watched the cricket!!

Back to Richie Benaud. Our son watches a bit of cricket but when I mentioned Richie Benaud, he hadn’t heard of him. Being a modern parent, I immediately looked up Google and was able to click on images and it brought up an entire gallery of portraits of a very young, muscular Benaud directly alongside his somewhat shrunken but ever so endearing, elderly self. There was even one of elderly Benaud checking out a much younger statue of himself: http://www.plowright.com.au/richiebenaudsculpture/richiebenaud1st.htm.

Harrods Bear Christmas 2001 in our daughter's pram

Harrods’ Bear Christmas 2001 in our daughter’s pram

I thought I had done just about enough googling when our daughter wandered in clutching what she described as her “winter bear”. Winter Bear is actually a 2001 Harrods’ Christmas Bear. Harrods has been producing Christmas bears since 1986 and each bear comes with “Harrods” stitched in gold on its paw along with the year. I have to admit that it’s looking very overdressed in its plush velvet snow coat in a sweltering Australian summer  (bring on the Speedos!)

Harrods 2001

Harrods 2001

I took this opportunity to introduce my daughter to Mecca of retail therapy and we googled Harrods. I have to admit that the website itself was a bit disappointing but I found this great blog post with a link to their annual Christmas parade: http://www.londonperfect.com/blog/2012/11/harrods-christmas-2012/comment-page-1/#comment-38637

So thanks to Google, I’ve covered quite a lot of intellectual territory in only a couple of days.

Like anything, Google isn’t perfect and like that vortex in the Pacific, there’s a lot of junk floating around in there. This might lead me into a whole new post about how we deal with information overload in contemporary world and the need for discernment. Just like any other source, we need to challenge and question what we find in Google.

My husband also mentioned another teeny little problem with Google… Internet Distraction, which I, of course, know nothing about!

Yellow Fever

Yellow Fever

Acute cyberchondria

Acute cyberchondria

There is also its evil twin, cyberchondria, which is well and truly fed by Google.

However, just a word of warning! Not all cyberchondria turns out to be chondria after all. Sometimes, all those dreadful imaginings actually do turn out to be real and when they do, we can’t blame Google.

Other times, somebody might just want a day off school!

So I guess Google is just like everything else.

It’s not perfect!

What are your thoughts about Google?

xx Rowena

A Million Dollar View…My Journey Through Ambulatory Care.

I am up in the clouds again. Being creative, that’s not unusual but right now, I’m literally up in the sky wrapped up in an enormous, sky-blue woolly blanket dotted with a scant scatter of clouds. There is no wind today and the clouds are just sitting still like lost sheep.

Given the view, I could be on a jumbo jet.  Yet, I can actually recline my chair and put my feet up without squashing the sardine in front or behind. There are no screaming babies or in-flight movies either.

The lunch trolley arrives with a much anticipated rumble. It’s four star service with rather humble offerings of cheese and tomato or mock chicken served up on very plain white bread. We are offered a choice of apple juice or Paradise Punch. I always take the Paradise Punch. I wouldn’t mind a touch of paradise as long as it’s not permanent.

My nurse would make a fantastic Hosty, even though she’s not wearing one of the glamorous purple gowns. They’re reserved for the chemo patients.

Inside 12A looking out

Welcome to 12A. It isn’t First Class but it’s certainly not economy either. I am being very well looked after. I haven’t been admitted.  I’m just visiting, having my regular three-weekly transfusion of Intravenous Immunoglobulin (IVIG). Immunoglobulin (Ig) is another name for antibodies, molecules produced by the plasma cell. IVIg is very precious and is currently is worth more than twice the price of gold on a gram for gram basis. On a more comic note, the stuff looks a lot like lemonade… all clear and bubbly. For all I know, it could be sugary sweet as well. After all, I’ve never drunk the stuff!

The views here are first class.  Today, I am facing west and the Blue Mountains form a smeary smudge just above the window sill. Up above there’s only sky. If I stood up, which is a little challenging juggling a laptop, a cannula and a cup of tea, I could see across the historic Gore Hill Cemetery and the Lane Cove River, which flows into Sydney Harbour. The views are much better in the other treatment room where the Sydney Harbour Bridge stands centre stage. It is not the conventional perspective you see on postcards. It’s the back-end view but it’s still magic.  I have always loved The Bridge but since coming here, we’ve become something like close friends, even soul mates. The Bridge has been my strong and silent partner, helping me get through all of this. There have been some pretty dark times in here, especially as an inmate when the “Coathanger” literally held me up.

I’m no longer afraid of needles but it can take a few jabs to find a vein and it certainly isn’t “pleasant”. My veins are pretty obstreperous.  I know there’s blood in there somewhere because my heart’s still beating but my veins have somehow managed to dry up. It’s like trying to get blood out of a proverbial stone. The nurses are extremely patient and accommodating and bring out the warm towels and squeeze toys. They’ll try anything to pump up the volume and believe me especially in winter, there have been some desperate times. My hands routinely turn deep purple and feel so incredibly cold, they’re like lethal weapons. Geoff and the kids flinch when I touch them. I have to warm my hands up first.

Yet, the nurses persevere. They take my hand and inspect the back of my palm surveying an arid, desert landscape. I hope and pray that they’ll get the cannula into my left arm so I can write and even though we both know it’s usually mission impossible, they’ll always have a go. They know how much it means to me and perhaps they’re also doing their bit to help a struggling writer.  They also tell me to drink loads and loads of water before each treatment and I certainly try to do my best but with a long car drive, I have to be careful. I can’t pull up every five minutes for a toilet stop. At the same time, I desperately want them to get that cannula in my left arm so I can write and that’s what it takes…a gallon or more of water. But I want to write. I need to write. For me, writing is breathing.

12A has become my home away from home… some kind of strange oasis, the calm at the eye of the storm. My transfusion takes about 3-4 hours and during this time, I write, read or chat with my “colleagues”. Before the kids started school, these treatment sessions provided me with much needed time out….a time of relaxation and repose. It was my “cave” and my retreat. Life was very hectic back then.

My trips to 12A are full of routine, ritual and rewards. That’s what gets me through.

The kids usually go to my parents’ place while I’m here and I set myself up with a cup of tea, a muesli biscuit and all my writing and reading material. I naturally always sit in one of the chairs facing the view and I very rarely miss out. The view is my salvation!

The Twins

When the cannula goes in, I usually focus on the two tiny little flags perched on top of the Sydney Harbour Bridge. Apparently, fixating on a point is a relaxation technique but I’d been coming here for several years before I’d found out about that. The Bridge was just there like it’s always been with its broad arms proudly spanning the Harbour. She is still stunningly beautiful after all these years so strong, majestic and omnipresent.

Usually, my husband and I have afternoon tea at Kirribilli afterwards. Nestled under the Harbour Bridge, Kirribilli has a quaint almost village feel with rambling old terrace houses, narrow, winding streets and stunning harbour views. It even has a community garden. We used to hang out at the local bookshop with its community knitting projects and tea served in real cups and saucers. It was another home away from home…an oasis after a day at the hospital. Sadly, the bookshop closed a couple of years ago but we’re also known at the Freckle Face, which is just downstairs from my dentist. The Freckle Face sells tea towels saying something along the lines of a face without freckles is like a sky without stars. My daughter has had a smattering of freckles over her nose ever since she was 3 despite smothering her face in sunscreen and staying out of the sun. Freckles are our friends. They have to be. They’re not going anywhere.

I have met an amazing cast of characters in here and it’s never been morbid or depressing. People are often amazingly upbeat, philosophical and they are going to beat whatever’s trying to beat them and they are very positive and determined. If anything, I’d say the people in here are turbo charged and very pro-active. I’ve come out of here with all sorts of good ideas and suggestions. I’ve even managed to meet a few writers. One put me onto a fabulous TED talk by Elizabeth Gilbert about the source of creativity.  http://www.youtube.com/watch?v=86x-u-tz0MA

But the seasons are changing.  This is my second last visit to 12A.

What the kids call “the brown hospital”, the ambos call “the chocolate block” and what was named the “Royal” North Shore Hospital when it really was the 8th wonder of the ancient world, is closing down and going to be demolished. Detonated. Kaboom! The much-anticipated new, almost space-aged hospital is almost ready for sickness.

It’s terminal….the Chocolate Block as viewed from neighbouring Gore Hill Cemetery.

Many would argue that the Chocolate Block is well and truly passed her use-by-date. An imposing brown-brick box stuck on top of Gore Hill, she’s not exactly beautiful. To be honest, she’s on the ugly side of “eyesore”. I’ve also heard on the hospital grapevine that she’s riddled with concrete cancer and might even fall down before D-day. I don’t know about that but the lifts certainly have “issues”. They take so long to turn up that I can’t help wondering whether they’re daydreaming, stuck between floors, or having some kind of midlife crisis.

Being stuck in hospital isn’t that much fun either and there have certainly been times as an “inmate”, where I could have blown the hospital up myself! I wouldn’t have needed dynamite either. I was pure explosive!

That was five long years ago now but I haven’t forgotten. I can still hear my then 3 ½ year old son stammering: “Mummy better? Mummy better?” He was all innocence. He didn’t know what he was asking.  I don’t even think I gave him an answer. We didn’t have a lot of answers back then. With his big, brown eyes and golden curls, he was way too young to deal with all of that but it’s not as though we had a choice. It was just the way it was but fortunately, we survived!

After going through all of that, it’s hard to understand how I’ve developed this strange sense of attachment now that the Chocolate Block is about to expire. I wouldn’t call it “love” but there’s a very definite fondness. Fate has seemingly forced us into something approximating friendship and I don’t really want to let it go. I want to hold on. There are so many, many memories and even though most of them are pretty bad, they are still part of our story… who we are and where we’ve been. That means something to me even though the place is slowly falling down, rumbling and decaying.

You see, a hospital isn’t just a place of disease and despair. It’s a place of healing…a place of hope where relative strangers reach out and care for your most personal, most desperate needs and love and care for you. They take you into their hands and sometimes into their hearts. After coming here for so long, I am no longer among strangers. This is my extended family… my friends. We care. We reach out of our little cubicles and touch one another. At least, we try!

I know it sounds strange “enjoying” having medical treatment… having a needle stuck in my arm for a couple of hours when I could be outside somewhere in the real world and doing real world things. I could be at the beach but I was there yesterday. I walked through the sand and felt the waves freeze my toes. The kids, who always seem to be so immune to the cold, were jumping over and under the waves and splashing each other with water and building canals through the sand. The sun was glorious just as spring sunshine always is after a cold winter. It’s a wake-up call. Time to shed your winter skin and squeeze and shove all your whale blubber into some sort of swimming attire and dive into the waves.

I could be at the beach but I’m here and I have no regrets or disappointment. We all need time to stop. Pause. Contemplate. You can’t just go, go, go, go, go. You need to be still for a bit just let all the busyness of life recede like a wave and just be. This is enforced stopping coming in here although I don’t really stop because I always write but this writing is usually more reflective. I often think about what’s transpired since my last visit. What’s coming up. I also have a few regulars I meet up with too. I’ve lost track of my favourite at the moment an older lady who would shoot me for calling her elderly because she is a young woman displaced in an older body. That’s all. Just like I still consider myself 25 despite appearances to the contrary.

The bloke across from me doesn’t quite see it like this right now. He tells me being sick is a full-time job. I know what he means.  I’m down here three days in a row this week myself but that is exceptional. I have appointments with the rheumatologist, my transfusion, breathing tests, the lung specialist and the gastro registrar. That’s three different specialties in three days. I can get rather miserable too but I have to guard myself from that. Protect myself from the undertow. Before you know it, it can snatch hold of you and drag you under and it’s very hard to find your way back up to the surface! You could very easily drown!

The Chocolate Block may not be a perfect world but it’s been there for me through thick and thin. I’ve had my team of doctors, nurses, chaplains, physios, OTs, social workers, food service, cleaners and the beautiful Pink Ladies and everyone behind the scenes who somehow manage to keep this hospital operational. Collectively, they’ve not only saved my life but have also given me quality of life. They have given my husband a wife, my kids their mum and my parents still have their daughter. That is priceless!

I know the new hospital is going to be brand new, bigger, better but I’m losing my room with a view and it feels like I’ll be having my treatments in some kind of cupboard. After four years of staring at those little Australian flags perched on top of the Sydney Harbour Bridge, I’ll be staring at a blank wall and it won’t be the same. It won’t be the same at all. The chemo patients and their nurses will all be moving to the Cancer Centre and I’m off somewhere else. I don’t even know where I’m going but I’m pretty sure that most of the nurses who have been treating me for the last four years, won’t be there. They’ll be gone. They know my veins like the backs of their own hands and as I said, they’ve always tried to get the cannula into my left arm so I can write. It is such a small detail in the overall scheme of things but it’s meant the world to me. The nurses have been my rock throughout this tremendous storm and I have been the limpet. I have clung to them as the waves and the wind smashed into me on every side.  But now the rock has gone and I’m slipping into free fall drifting, drifting. I have never seen a limpet drift. They’re clingy…always glued to the rock and nothing will pry them off. All I’ve ever found is the empty shell.

It’s not just the nurses I’ll miss. We are a community. We might be a motley crew battling a myriad of things like cancer, auto-immune disease, blood disorders but we’re a community. It’s a place where we all come to find healing, understanding and we’ve also found that great Australian tradition… mateship. A mate is someone we fight for. We don’t just throw them overboard. Not that I’ve been thrown overboard. I still have one more treatment to go and I can’t complain too much. After all, they have built me an entirely new hospital!

Some people are never satisfied!

I know I’m being a capital letter Drama Queen…the dying swan. But I don’t care. Right now, I don’t feel like moving forward.  I feel like going backwards, wrapping myself up in my dooner and sleeping through. It makes a fabulous cocoon.  I’m only human. I’ve had enough of stormy seas! I just want to sleep!

But…But…But…

The way forward or the way back? Scenes at the Chocolate Block.

Even this control freak of control freaks has to concede that things are moving on. There is nothing, nothing at all I can do to stop or change any of it. The hospital juggernaut is just too big and clinging to the past will only make me sick. It’s certainly not worth dying for! Given the volatile nature of this auto-immune disease, I really have to pick my battles very, very carefully!

Besides, is a hospital really something I want to cling onto? Wouldn’t this little limpet be so much better off perched on a rock somewhere down at Kirribilli instead? The hospital doesn’t have a monopoly on harbour views. The Sydney Harbour Bridge isn’t going anywhere. It will always be there smiling, strong and resilient… just like me. After all, I’m a survivor!

xx Rowena

PS:  It’s taken me almost a week to work on this post and I’ve been going through some difficult emotions. While being sick can feel like a full-time job and I’ve spent 3 days at the Chocolate Block this week, it’s not my world and it really is just a very small part of it. It’s just that sometimes hospital looms larger than it should both in positive and negative ways and perhaps it’s time to shrink it down a bit.

I’ve actually done quite a range of things this week. I stayed at a friend’s place in Sydney on Monday night. Tuesday, I met up with Mum and the kids after my appointments and we saw The Lion, the Witch and the Wardrobe at Marion Street Theatre. I also had my first violin rehearsal this week and met a whole new group of people. We made music together and laughed as we made mistakes and laughed as we improved. Today, I took my kids to see their dance teacher star in Peter and the Wolf and we arrived home to see the Sydney Swans, our Aussie Rules Football team, win the Grand Final by a nail biting 10 points. The game was so close I could barely stand to watch those last few minutes.

We live in such a diverse and eclectic world and somehow we need to cross the bridge and embrace change, instead of being afraid or turning back. I find that particularly difficult but as the inspirational Helen Keller once encouraged:

Life is either a daring adventure or nothing. Security does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than exposure.

Another challenge awaits!

Quit Before You Try?

When do you step out there, extend yourself and try something new? Something that you know isn’t your thing but you acknowledge that it might be good for you, extend yourself in some way and may indeed help you overcome a few of your weaknesses?

Alternatively, when do quit while you’re ahead? Leave the door shut and dash the other way?

Let yourself off with one of the usual excuses:

A)      “I can’t do it!”

B)      “I’m too busy!”

C)      “It’s not my thing!”

D)     All of the above.

This is my dilemma. Today, our daughter issued me with my next challenge.

We were baking ANZAC Biscuits when she almost knocked my socks off. “Mummy,” she says in her very cutest, 6 year old, high-pitched squeaky voice: “I want you to do physie.” (Physie is short for physical culture  and involves a combination of marching, dance and gymnastics).

I would have been laughing hysterically if she wasn’t so completely serious…deadpan even.

“Why do you think I should do physie?” I asked. I was rather curious. She had seen some other mums competing at her physie competition that morning and it must have given her ideas… ideas well beyond my station!!

“You’re a good dancer,” she replied.

I could have died laughing. Only a few days ago, both kids had told me I was “clumsy” in no uncertain terms. Neither of them stood up for me at all. It’s a pretty apt description. I was not only born with two left feet but they are usually heading the wrong direction. I’m sure I’ve also broken a few toes in my time. On top of that, there’s my muscle disease. It takes a crane to get me out of bed most mornings.

I’ve never heard of someone who is clumsy being a good dancer before and you can’t blame me for feeling confused.

When it comes to physie, I’m quite happy to drive the taxi instead of taking to the floor.

But…

But…

If the idea of me taking up physie is so ridiculous, why didn’t I just dismiss it outright?

I suspect that the idea was so far left of left field that I couldn’t ignore it. Why physie? Why physie of all things? I could understand something more sedentary but physie is pretty physically active. I mean you need to learn to do the splits. That’s usually something I only do when my ankle gives way…which it does pretty often by the way.

There’s also the matter of wearing a leotard in public.

However…

Sometimes somebody else can see things in you which you can’t see in yourself and they can lead you onto an entirely new path of self-discovery. Is this one of those things? Should I just dip my toe  in the water and give physie a go? Is it something I need to do like going to the dentist or going on a diet? You do it because know it’s going to be good for you. I’ve had root canal before. Even though going public in a leotard could be painful, it isn’t root canal. We all need to work on our weaknesses and besides, I might actually have fun, meet new people and extend myself.

All this positive, motivational talk stuff is great. However, there are some serious downsides to taking up physie.

Top of the list has to be strutting around a crowded room in a leotard flaunting my six pack. Nobody 40+ really wants to be doing that without some serious camouflage and there is none. At least at the beach, you can wear a sarong or hide beneath your towel.

Then, there’s the matter of the hair and make-up. My hair is usually a very neglected after-thought and I’m certainly not up on hair styles of any sort or using curlers or applying hair spray through a fire hose. Make-up isn’t my thing either. These days, lipstick is usually reserved for exceptionally formal occasions and I usually struggle to find one anyway.

But surely physie is more than leotards, hair and make-up? I’ve looked into all of this for my daughter. Physie builds up all those all-important mind, body, spirit connections that somehow come together to enhance brain plasticity. I could use a bit of brain enhancement.

Then again, I don’t know why I’m even considering taking up physie. We only got into physie because:

1)      Her friends were doing it.

2)      It was convenient.

3)      They offered two free lessons and I didn’t expect her to take it up.

4)      My daughter thought physie actually meant fizzy drinks.

Who am I kidding? I know I’ll never take up physie. I know that I shouldn’t call myself defective but it feels like there isn’t much of this body which really works anymore. That doesn’t hugely bother me most of the time because I’ve never been sporty. In fact, I’ve always had quite an allergy to sport. But what with all this personal development stuff and trying to maximise my health, I am seriously wondering whether I should be extending myself? Work on my weakness! By putting myself in this “bad at sport” pigeon-hole, am I in fact selling myself short? Could I actually do it? Or, should I just  have a go and do what I can? Surely, something is better than nothing? I know stretching is good for my muscles and Tai Chi has been recommended before.

Perhaps, I could just test the waters doing physie with my daughter at home in secret. That would mean no leotards, so fancy hairstyles or make-up and if I have a nasty accident, I could just quietly call the ambulance in private instead of winding up in the local paper or even on the news! Physie Mum Breaks Neck…I can just see the headlines now!

I’m also not sure whether someone who uses a walking stick now can actually do physie. It does give a new slant on twirling the baton.

Perhaps, taking on physie is a bit beyond me…certainly at the moment when my muscle disease has flared up. Maybe, it’s okay to explain to my daughter that Mummy isn’t super human and I can’t do everything. Just like anybody else, there are things that I can do and things which I can’t. That’s no big deal but…

How can I tell my kids not only to have a go but to persevere at things when I won’t have a go myself? I’ve taken up the violin and practiced almost daily for the last six months initially to encourage our daughter. Provide an example. Show her how to persevere through the squeaks, playing two strings at the same time, and then being able to play beautiful music.

A few years ago, I reluctantly did a very basic Aussie Rules Football (AFL) coaching course to help our son with his AFL. Every year, they have the annual parents versus kids’ game at the end of season and I got way ahead of myself and the next thing I knew, one of the kids had tackled me. AFL was something I needed to watch from the sidelines.

I am open to possibility, trying new things, extending myself but…

I should just learn to say no. I really am too busy, over-extended and I really need to focus. As it is, I am being split in so many different directions that I don’t know where I’m going. No, I definitely do not have the time, mental space or energy for any new activities right now.

Besides, last night my husband suggested I learn the basics of the guitar to help our son with his guitar practice. Since I took up the violin to help our daughter, I feel I should support our son even if my husband is already helping him. He really seems quite keen and he may have found his thing. We have been looking for his thing and I really want to encourage him along. The thing is I just can’t get my head around the guitar with chords and things. I grew up playing piano and the guitar seems a very different beast. But I have decided to have a go. I’ll at least try to look like I understand what he’s talking about. I’ll get him to teach me. He’ll like that!!

I also wonder whether I am taking things too far. Just because my kids are interested something, that doesn’t mean I have to take it up as well. But I don’t like the idea of just being Mum’s taxi either. I’d prefer a much more interactive, proactive role…not just passive. I also want to be involved in their lives and do things together. Take an interest. That doesn’t mean, however, that I have to live their lives. Become them. I don’t have to take up their each and every interest just listen, observer and gently encourage.

I am also wondering whether suggesting physie was a serious suggestion or was it nothing more profound than wanting to spend more time with Mummy?

I might just ask her teacher about adult classes for beginners tomorrow. Meanwhile, I’m hoping our daughter will forget all about it and I might just get off the hook.

Being extended is all very good but nobody wants to snap!

Meant to Be… Whale Beach Revisited.

Recently, I had the strangest experience. One of those freaky coincidence experiences that really makes you wonder how the universe operates and how these seemingly unrelated cogs suddenly end up whirling together in unison.

Whether you believe in God or not is almost irrelevant because it’s hard to believe that God who operates on such a grand scale such as creating the universe, would have time to be bothered with the minutiae of things. But then something happens that makes you question all of that. God strangely seems to have all his fingers in your pie, guiding and directing you in such small and subtle ways that it’s all quite mind blowing.

I use the word “serendipity” to describe these moments. Sometimes things happen that are just too slick for any kind of explanation and I guess you’re just left with what was “meant to be”.

Only the night before, I’d been discussing serendipity with a friend. Since I’ve sort exited the rat race  due to my health issues, I’ve ended up in a spot where to some extent, I can let my life go with the flow a bit. I am a bit more flexible and can respond to changes of direction instead of being stuck on the old railroad track. I’ve had my plans but I’ve also been on some fabulous goat trails which have extended me so far beyond what I ever considered possible. This has included starting to learn the violin this year.

As John Lennon said:

Life is what happens while we’re busy making other plans…

Just for the sake of honesty and disclosure, I am a Christian but I’m not a ram it down your throat Christian. I experience a spiritual God who actively guides my life even when I’m focused on other things. I am a human, breathing miracle just like every other person on this planet.

So often we miss what God is doing in our lives or don’t understand that suffering is necessary for growth and as much as we don’t like adversity, it is part of life. Ironically, without adversity, we do not build resilience and we lack backbone, inner fortitude and we fall apart at the first sign of trouble. Adversity is as essential to personal growth as air is for breathing.

That doesn’t mean I like it but life is what it is.

Anyway, yesterday morning my daughter was competing in her first physical culture (physie) competition down at Terrey Hills. She had to be there at 8.30 AM so we stayed at my parents’ place in Sydney the night before and we had a 6.30AM start. That’s incredibly early for a pair of night owls.

Physie is a combination of march, dance and gymnastics set to music. The girls have to remember quite detailed routines and it strikes me as being very precise and disciplined. My daughter does it with her friends after school and our club has a fabulous sense of community and fun as well as encouraging the girls to apply and extend themselves.

As I mentioned before, this was Amelia’s first competition and although we’d had a trial run the week before, it was still quite nerve-wracking as it is when you try something new. I usually chat to my friends during physie and miss the gist of what’s going on. Hence, I had to a buy the regulation leotard in a stressful, last-minute panic. I also remembered hearing something about the hair and curls and being being able to buy some kind of twisty doobywackers to do the job. Not being much of a hair person myself, I didn’t bother filing that thought along with a thousand and one erroneous pieces of paper which are floating around this place like lost swans. You know how it is. You just get completely overloaded!!

In the end, her hair looked  gorgeous in a straight ponytail and I thought I was Mighty Mum just because I’d managed to get a hair ribbon in a matching colour. I’m just trying to keep things simple, especially for our first competition.  You can get dreadful performance anxiety as a mother. Not because you’re worried your kid is going to screw up. You just have this awful sinking feeling you’ve forgotten something and that you will be the weakest link.

The performance part was almost an anti-climax. There was no big catastrophe.  She remembered her routine. She didn’t get a place but she was happy with her pink participation medal. It was all over quite early and we had the rest of the day ahead of us.

Now, any sensible “sick” person would have gone straight home to bed after all of that excitement but not this little black duck.

We were off to Whale Beach.

I know this plan sounds somewhat insane given that I’m currently on 50mg a day of prednisone and my muscles are starting to waste away. Instead, you would think that I would have a nice, quiet day instead. But I am who I am. Carpe diem… seize the day. Tomorrow, I can crash. Besides, on this much prednisone, I’m like a Morris Minor with a V8 engine. I’m zooming along with all sorts of bits falling off. I’m probably about to combust. But I literally can’t stop!!

This was the first time I have driven down to Sydney myself in at least 8 years. I can’t even remember the last time I’d driven down to Sydney myself. So there I was in Sydney with the car halfway to the Northern Beaches and a trip to Whale Beach made such perfect practical sense.  I have only driven past the house once or twice since we sold it over ten years ago. That place was like my heart and soul being turned inside out and painted onto an enormous canvas. I desperately wanted to go back. See the house. Go and sit on my rock and absorb the waves. Share it all with my little girl! It would be so, so special!

Recently, I had realised that Whale Beach has dropped out of our family narrative. We’ve  moved on and I didn’t think the kids knew much about it at all. You can’t live in the past but I want them to know me. Experience me. Whale Beach has been such a significant chapter that I couldn’t leave it out. It’s still etched into my fingerprints, my heartbeat, my very being.

So our adventure began. Driving up Mona Vale Road past the Baha’i Temple, I slipped back in time. I have driven up and down this road hundreds of times before and even though it’s been a very long time, I still know it  like the back of my hand. I am going home. I am so excited but there is a little bit of caution too. What if they have knocked the place down? It’s been over ten years…a long time when you’re a 1960s shoebox shack with million dollar views.

As I park opposite the old house, I notice some people outside and wonder if they’re connected with the house. I don’t know what I was really thinking at this point. I was just grateful the house was still there.

When we first bought the place, it was painted primer pink and the cupboards were filled with all sorts of relics from the 1960s….old Women’s Weeklies, an old porcelain jug, empty Chianti bottles. There was even an ancient bottle of Detol.  There were all sorts of funny bits and pieces tucked away all over the place and we kept them. They were fascinating.

Mum and Dad had bought Whale Beach, well our little patch of it anyway, while I was still at uni. As a uni student, you really couldn’t ask for anything better. Unfortunately, I couldn’t drive at the time so there were grueling trips from Wynyard Station on the 190 bus and a hellish climb over the hill to reach paradise. Of course, there were parties. New Year’s Eve  staying up all night at the beach by the campfire and watching the sunrise over the water…a new beginning. For some strange reason, I still believe that life starts over on January 1st each year. Silly me!

There were also many, many hours of deep contemplative reflection, atomic angst and bust ups, broken hearts. The storms weren’t always over the sea.

But ultimately, it was a place of healing. Sewing broken hearts back together. Writing, journaling, working through stuff as I watched the street light twist and turn like a snake shining across the waves down the southern end of the beach.

Anyway, as I get out of the car, this young bloke calls out to me and asks if I could give him a jump start. From my point of view, he’s just asked me to perform open heart surgery on his vehicle. I can feel myself starting to panic a little. I really want to help but this is way out of my league. As anybody who knows me knows, I am not technical. I am certainly not mechanical and I’m really not practical either. The only thing I know about my car is that it’s blue and it has a luggage pod on top and that’s how I find it in the car park.

I am also a reformed nervous driver. I have realised that I have serious spatial deficits and it’s all about parking and manoeuvring the car in tight situations that’s the problem …not the actual driving itself. This doesn’t help me with the jump starting.  I will need to jiggle the car into position and this is looking very tricky indeed. Jump starting this car on windy narrow beach road presses all my alarm bells but I am feeling strangely confident. After all, I am on 50mg of prednisone and it really does make you feel like you can do just about anything.

The bloke senses my hesitation and asks if I’m in a hurry and then asks what I’m doing there. Not in an interrogative way but it’s not the tourist end of town. I tell him that my Dad used to own the house across the road. He tells me that his Dad currently owns the house. Suddenly, we are no longer two strangers passing by daylight. There is this link. Suddenly, the seemingly impossible becomes a reality and I am suddenly standing inside my parents’ old beach house and he is taking a photo of my daughter and I standing on the balcony with all of Whale Beach stretching out behind us. I am in absolute heaven.

I had never thought in my wildest dreams that this would ever happen but I can also  hear my mother saying: “only you Rowena”. I am always meeting strangers and establishing strange coincidences.

But we still haven’t jump started the car yet. Of all the people this poor guy had to ask for help, he must have picked the worst. Just turning the car around was a challenge and I no idea how to open the bonnet. I felt like such an idiot but we can’t be good at everything. I offer an emotional philosophical breakdown service. I’m not the NRMA but I came through. He got his car started and our paths deviated once again.

Mummy on the rocks.

I was on top of the world gushing with so much thought and emotion seeing the old place again but I still wanted to show Miss my rock down on the southern end of Whale Beach. The rock overlooks the surging waves and I just sit there watching them smash against the rocks exploding into a million million water droplets. The waves sound deep like there is some kind of underground cave. I am impressed by the sheer force and power of the waves…the energy. I can almost hear them breathing.

Miss is collecting blue periwinkle shells and lining them up and watches the snails stick their tongues out below and wiggle their tails. She is mesmerised. She runs off with the video camera and starts filming her own documentary. She is wearing a black vinyl jacket and looks very much the film director…just gorgeous.

I find some rock pools filled with squiggly snail trails. I remember photographing these many years ago and show them to Miss. I want to photograph her feet next to them. She tells me that “snails make the best drawers” and she films her feet while I take the photos. I can’t help looking at her and seeing a glimpse of my own reflection. She has told me before that I have stolen her hair and we look quite similar but she also sees the world through the lens and finds herself stranded on a rock surrounded by the waves with the video camera in hand. She is crying. I can’t reach her but a stranger comes to her rescue. She was never in any danger but at that moment, I knew she had the bug. She’d do anything for the shot!!

Anything to get the shot.

It was hard to leave Whale Beach but Geoff and our son were arriving on the Palm Beach Ferry. They’d been to football and were meeting up to go back to my parents’ place for my birthday party.

Family portrait at Palm Beach Wharf

This was my last day of being 42. If you have ever read the Hitchhikers Guide to the Galaxy, you will know that 42 is answer to the meaning of life, the universe and everything. This day kind of finished things up rather poignantly. I was satisfied…content. I could move forward.

I am now wondering, now that the mystery has finally been unraveled, what I’m going to do with the rest of my life?

That’s right. Now, I just need to find out: “What was the question?”

Three Magic Wishes…

Photo: the Chocolate Block. That’s what the amboes (ambulance drivers) call Royal North Shore Hospital.

This week my three magic wishes were actually granted…

  1. Alone.
  2. Doing nothing.
  3. Asleep.

This should have been amazing…a real Eureka moment…but it wasn’t.

You see, I didn’t just find some old genie bottle washed up on the beach and rub away. I had to go into hospital to receive my three magic wishes.

I was on the gastro ward at Royal North Shore Hospital, Sydney having a camera shoved down my throat to photograph my stomach and everything in between.

That was how I ended up alone with nothing to do and plenty of rest.

Was it worth it? There are easier ways to get a break…grandparents, vacation care, play dates. The list goes on. Did I really have to go through all of that?

Believe me, next time I’ll take up one of those other alternatives instead.

I only had the procedure because I didn’t think they’d find anything…at least, nothing new! It was all supposed to be routine and if I’d thought they were going to find anything more than last night’s pizza, I never would have agreed to the procedure. Ignorance is bliss.

I don’t know whose brilliant idea it was to actually look in there in the first place. Surely, it wasn’t mine? No, definitely not!  I was just the passenger going along for the ride. I’m not driving this thing. Actually, I’m not sure who or what is in the driver’s seat but that’s another story…

Also, I have to admit that being alone was over-rated too! I suddenly felt so incredibly alone when my husband had to leave. I didn’t know how long I was going to be just lying on the bed waiting but I’m not very good at sitting, or even lying still. Perhaps, he could have stayed a bit longer but I felt like such a baby wanting to hold his hand. This procedure was nothing. I’ve had it done before and all I remember is having a very deep and relaxing sleep.

The procedure itself wasn’t the problem. It was all the other stuff. Just wearing the white hospital gown was freaking me out. I was Cinderella unravelling all the way home from the ball as I madly struggled to hold all the bits together. You know what those hospital gowns are like and I really didn’t want my undies smiling out the back. It’s not a good look!

It’s bad enough that the gown is white but the bed and the sheets and everything to do with the place are white as well. There is something quite ghostly and chilling about being around white on white on white even if I can’t smell antiseptic. I am now lying in all this white with a doobywacker attached to my finger which tells me whether I’m alive (beep, beep, beep) or dead. The nurses did warn me not to panic if the machine alarms. More than likely, I won’t be dead. Apparently, these doobywackers have a nasty habit of falling off. That’s good to know. I’d hate to have a heart attack because I’m dead but not dead!

I’m now starting to wonder whether hospital humour really is quite so funny after all.

Anyway, the nurses were just beautiful and so understanding as I talked more and more and more…an anxious mess. Against the odds, they actually helped me to relax.

As I mentioned before, I’m not good at sitting still, lying still or doing nothing. Geoff has my phone so I can’t phone a friend, surf the net or check out Facebook. However, I did manage to keep hold of a book and a pen. I start blogging in the back of my book. You know those couple of pages they leave blank. They’re like the back of a business card. They’re meant to be written on. You could even start writing your own novel in there. Well, after filling up the back of the book and then filling up whatever blank space was in the front, I decided I’d better actually use the book for its intended purpose. I’d deliberately brought along a distracting book written by some goofy safari guide. I mean, Africa is such a long, long way away from Royal North Shore Hospital and I really was doing my utmost best to take my mind off of things. Usually, I’d be reading something really D & M, philosophical or by another survivor when I’m going through something like this. However, lately I’ve resorted to humour and distraction instead. The author is a safari guide in training and the book is filled with funny stories. Under normal circumstances, I’d be laughing my head off but right now, I’m really struggling to focus. You know where you find yourself reading and re-reading the same words over and over again and you get stuck on the same line of text but you can somehow convince yourself that you are actually reading. Even though you really haven’t digested what you’re supposedly reading, you still turn the page just to convince yourself that everything is okay when clearly it’s not.  Well, that’s what this was like. I just couldn’t switch off from where I really was and pretend that I was on a safari in deepest, darkest Africa.

An eternity later, the doctor appears. A device goes inside my mouth to keep it open and a cannula goes into my hand. It won’t be long now. I’m looking forward to slipping into a deep, relaxing sleep. I’m out to it.

It’s all over. I slowly wake up and the nurse gives me a sandwich and a cup of tea. There are about 6 patients all lined up to get our reports. I’m quite blasé the report because I already know what is going to say…heartburn, hernia. There’s nothing at all to worry about.

Ha! I should have known better. Every routine test I’ve had lately has brought fresh disasters. I am told I have a nodule. I don’t know what a nodule is but there’s a colour photo of it on the report. I’m usually hungry for information and love a photo but this is different. I’ve taken a few lessons in avoidance and denial lately and I just don’t want to know.  But I am weak willed. I have to look and I’m now staring almost through it. The report says that it’s tiny…only 6 mm but it looks more like a mountain to me. It’s nasty…very nasty and if it isn’t terminal, it’s definitely radioactive or worse. Sure, I know they’ve zoomed in and made it look a thousand times worse than it is but I can’t get that image out of my head. This thing is a mountain…an Everest-sized mountain and I’m not going to climb it.

The doctor, however, seems quite relaxed. He’s taken a biopsy and I’m to follow it up in the clinic.

Geoff is also quite relaxed about the results. He’s my rock.

I’m still unconvinced. The report tells me that they will contact me within 7 days if it’s nasty and I wonder how they will reach me if I forget to charge my phone.

You would think that this would be enough drama for one day but now I am waiting for the rheumatology registrar. We live more than an hour’s drive away from the hospital and so as much as I can, I try to multi-task. That means squeezing as many appointments as I can into one day. The registrar arrives with my Professor in tow. There is no guess work involved here. I already know I’ve had a flare. As much as I might be in denial and thinking a mild flare isn’t an emergency, it is starting to look like the makings of an emergency. My prednisone has been jacked up to25mg and I’ve been put on weekly blood tests. As bad as 25mg of prednisone sounds and take it from me 25 mg of prednisone is going to do its very best to turn me into a Michelin woman with a very bad temper, it could be worse. If this doesn’t work, I’m looking at 50mg of prednisone and a trip to hospital was also mentioned. So unfortunately, this time I am not over-reacting or being some kind of hypochondriac. This is what it is.

I know it’s going to take a lot of positive motivational talk to get me through the next couple of weeks. I have been through this before and they have managed to get my auto-immune disease under control and reduce the prednisone to manageable levels. This is temporary. It isn’t forever. I can get through this. I can do it. The sun will rise. Stay tuned.

Sunrise    Jindabyne 2012

As luck would have it, I had booked the kids in for a Siblings and Young Carers Camp at Camp Breakaway  and we dropped them off yesterday morning. It was perfect timing and exactly what we all needed. I marvel at the timing of it all. When I had booked the kids in for camp, I was quite fine and had wondered whether they really needed to go. Our kids are only 8 and 6 and haven’t even been for a sleep over with a friend yet. It was quite a big deal to ship them off with strangers but I had actually met the General Manager at nippers and she was so lovely…so compassionate. I took a deep breath and I went with it. By the time the camp had come around, I was off having tests in hospital and my auto-immune disease had flared and we all really needed it.

I was super impressed by how much trouble the team at Camp Breakaway had gone to create a fun, party atmosphere for the kids. The theme is Under the Sea and they had made a mermaid and merman and you even walked through a decorative shark’s jaw when you arrived. I could literally feel the love in the air and I was so pleased my kids were going to be a part of that. It was a really happy place. Our kids were so entranced, they barely said good bye. That was something for our 6 year old daughter. She struggles to let go of my hand when I say goodnight so that was a very positive sign. I’m so relieved the kids have the opportunity to get away from all of this and just be kids for a bit. Have fun. Enjoy themselves without constantly running into shadows.

I also have the chance to rest and recuperate a bit. That said, I am also thinking about the kids and wondering what they’re up to. I wouldn’t even mind a phone call but I have to be strong. Let them go. They will be home soon enough.

I know it’s rather heavy writing about this sort of thing. People don’t usually talk very much about life, death and everything in between. I don’t usually talk about it either. As you can see from my previous blogs, we lead a pretty active life and we’ve been up to all sorts of fun activities during the holidays. However, we also live with a shadow just like so many other people live with all sorts of shadows. Things aren’t always easy but they’re not always hard either and we enjoy life. I try to squeeze the last drop out of every day and yes, quite often I over do it but what is the point of living if you do not live?

I’d love to hear your thoughts on living with adversity. How do you get through?

Camp Breakaway can be found at http://www.breakaway.org.au/