Tag Archives: lungs

Lungs, Lunch and Violin…Just An Ordinary Day in Paradise.

Yesterday, Geoff and I drove down to Sydney for what turned out to be: lungs, lunch and violin.

Well, that’s quite an over-simplication. Or, what you could call: “the bare bones”.

Starting with the lungs…

Lungs

Every three months, I have routine lung function tests followed by an appointment with my lung specialist to monitor the spread of fibrosis in my lungs and to manage infection and any other lung nasties. While my lungs aren’t great and I have about 60% lung volume at the best of times, the fibrosis has been pretty stable for the last two years and I even get the odd improvement. So, these appointments aren’t all doom and gloom and we usually have a few laughs with my specialist.

However, there is no denying the reality of these appointments. My lungs are my weakest link and so we’re pretty much staring straight into the face of fear, eye-to-eye, without so much as a blink. We are probing the depths, trouble-shooting and coming up with a detailed defense strategy. This is very sensible and naturally the more you know about your enemy and yourself, the greater your chance of victory. However, at times, these conversations hit a nerve and it’s like plunging a knife in a very raw wound and it’s not surprising that I completely freak out and leap out of my skin. Who wouldn’t?!!

Although I’m tougher than I used to be and am somewhat resilient, I’m not made of stone. I crumble and fall apart just like anyone else and wish I could cry. Cry buckets of tears but the well has run dry.

The key outcome of this appointment is that I need to start dropping my prednisone further. This is supposedly good news. I keep telling myself this is good news. That means that I’m doing well. The disease is being managed and the risks posed by the medication outweigh the likelihood of the disease flaring up. This is what I want.

I can say that more than 24 hours later when the dust has settled. However, yesterday I was beyond terrified and wanted to boot some poor innocent hermit crab out of it’s shell and move in. Lock myself away and shut the door. Never come out. I really had to remind myself of all those things you need to do when your journey hits a snag and the wind goes out of your sails ie walk, get some sun, play my violin. EAT CHOCOLATE!!

We are now getting pretty close to that invisible line where the disease starts to reclaim lost ground and if it isn’t managed like the precarious house of cards that it is, I could literally come falling down. Have a flare. Of course, this possibility terrifies me and for good reason and I feel like I’m about to drive a car over the edge of a very steep cliff and the waves down below are just waiting to wrap around me. Pull me under.

I don’t know how likely it is to go pear-shaped but my doctors seem reasonably confident. This would suggest that all my flapping around is mere “catastrophising”, even though I still see it as healthy self-preservation. I should be right dropping 1-2mg gradually over a few months but then the real test is on. They’re trying to get me down to 5mg. At this point, I’m very inclined to quote Darryl Kerrigan from the classic Australian movie: The Castle:

But sometimes, you need other people to have a bit of faith in what you can do and what is possible. Sometimes, you need that outside reminder and jolt that your dreams really can come true.

So, it seems, I have to swallow my own medicine and take a deep breath and swing from the chandelier!

However, our day was not all doom and gloom!

Lunch!

After dealing with the lung monster, Geoff and I headed down to Sydney Harbour for lunch at The Kirribilli Club in Lavender Bay. This was the perfect antidote. I chose this place due to its sweeping views over Lavender Bay, Luna Park and the back of the Sydney Harbour Bridge. We could see the planes coming in to land in the distance and the ferries chugging their way through the harbour to places like Manly, Balmain and Kirribilli. It was so incredibly relaxing and the perfect antidote for a stressful morning. I still felt agitated inside, way too much like a churning washing machine but I could also feel that calming salve mounting a counter-offensive and could almost relax. Watching the water is so good for that and so incredibly therapeutic!

By the way, I should mention that it was unseasonably cold and the wind was whirling around, slapping us in the face. Yes, it hurt!

I was mighty glad I hadn’t got around to packing up my Winter clothes because woollens are back on. Indeed, where are my thermals?

After lunch, we went up to my parents’ place to pick up the kids and have dinner.

My beloved violin.

My beloved violin.

Violin

I’d packed my violin and decided to have a bit of a jam with my Mum who is an accomplished pianist. She’s taught the piano for many years and now that she’s retired, plays in The Lyric Trio with a singer, clarinet and her on piano. They play at Nursing Homes and retirement Villages, pretty much out o the kindness of their hearts.

Playing with my Mum was a huge step for me. While it sounds simple and natural enough, I’ve only been playing for 3 years and for the last 12 months, I’ve been struggling to keep up with my practice, especially given the ups and down with my health. The violin is a very demanding instrument and it’s not easy for anyone to develop good bowing techniques and get those awkward, uncooperative fingers to behave and find exactly the right spot every time. When you mix these difficulties with someone else playing the  piano, my mistakes become horribly magnified…especially to a trained ear!! These mistakes aren’t anywhere near as fatal when I’m playing alone. Sure, I know it doesn’t quite sound right but there isn’t that discordant clang, which is almost as painful as fingernails scraped down a chalkboard.

Just to exacerbate my violin battles even further, my bifocals were struggling to read the notes and I was making more and more mistakes. This infuriates me, of course, these mistakes aren’t “me”. Or, at least, not a true reflection on my playing.

I’m sure I can hear you pondering about me and the bifocals and wondering  how they fit in since I don’t wear glasses but is a sin of omission ie taking my glasses off for photos really such an unforgivable sin?

I think I’ve just stumbled into another post.

xx Rowena

Wave Watching at Whale Beach

Here I am sitting on the rocks at Whale Beach watching the waves literally explode as they smack against the rocks. It is hard to describe their incredible force, bursting like fireworks and then cascading through the cracked and creviced rock platform down below and returning back to the sea.

Multitasking out here is absolutely impossible. It’s a case of either write or take photos. I can’t do both. Damn! The frustrations of an imperfect world!

So let me rewind just a little and look through the lens instead of the pen.

The waves are taunting and teasing me. Luring me close with their smashing, violent force only to recede and disappear and fade into a gentle rolling lull. Talk about utter frustration!

Not that these efforts were ever going to be about achieving the perfect shot…getting the big one! The light’s all wrong. It is almost dark and this is a time of low light and shadows. These photography efforts are more a case of just trying the capture the moment as it is and I guess with a hope of coming back at a better time. I’d also like to “play it again Sam”. I was mesmerised by it all. Not just the visuals but also the symphony of sound as the waves beat and whooshed around the rocks and into the cavernous depths below. I would love to share this experience with the world even in its imperfection because it was just so powerfully beautiful and moving. Moreover, the turbulence of the waves somehow reflected some of my inner unrest and the knowledge that I have a hell of a fight on my hands. My journey is currently very intense.

Trying to photograph the waves reminds me of surfing…not that I’ve had a lot of experience on the front. Aside from getting the light right and choosing a good subject, timing is critical. You have to press the button at precisely the right moment or ideally just that microsecond beforehand to compensate for that barely perceptible time lag between the subject and the lens. Timing has never been my strength. In fact, today I wouldn’t even say I ran late. I went AWOL…off the grid…beyond time. Bought myself another watch and I’m hoping that will help. Ro without a watch doesn’t stand a chance!!

In the end, I found myself trying to read the waves to better predict the big ones in advance. While this all sounds like I know what I’m doing, I’d probably have better luck trying to read its palm. I’m no seasoned surfer who lives and breathes with the waves. I can’t even spot a rip. Moreover, although I’ve been spending a lot of time at my parents’ place on the Pittwater side, that’s flat water. There’s barely a ripple.

Yet, while I mightn’t be kind of enlightened wave-watching expert and interpreter, that didn’t stop me from trying. Even though the light wasn’t anywhere near perfect, I still wanted that shot. Every single muscle and cell is primed and on red alert and I was poised on the rocks with my camera in position like that stalking, lurking cat about to pounce on a mouse. I’m watching waiting, observing all those very subtle signs as the water surface curves and tightens but then swells and falls. Of course, the big one doesn’t come while I’m fixated, camera poised. I wait and wait and wait.

As I said, photographing the waves is like surfing. Surfers seemingly sit on their boards for eternity waiting for the big one to come and now I was doing the same!

Waiting is also a big part of photography…huge!

The waves go quiet. There’s absolutely no action whatsoever so I decide to swap my camera for my notebook and pen. In this instance, my notebook is made of paper. It’s pad not a computer.

Of course, now that I’m writing and I’ve packed up my camera, a huge, ginormous waves smashes against the rocks and water shoots up like lava from an exploding volcano. Whoosh!

I am in such awe of its raw, unbridled energy and power. I have always loved watching the waves feeling that all that energy somehow mirrors the raw, turbulent energy thrashing around in my soul. I’ve never been one of those chilled out peaceful types. Definitely, a woman of passion!

Wave hits just as I'm taking a selfie.

Wave hits just as I’m taking a selfie.

Many years ago, I spent hours sitting on these same rocks when my parents had a place across the road from the beach. Back then, I also photographed the waves somehow trying to freeze all that energy and power in 6 x 4. I had a favourite spot… my rock…where I used to contemplate and photograph life, the universe and everything. Indeed it was on this rock that I met a special friend and I was visiting her this afternoon for a healing massage, a chat and very much a merging of souls. She has the most amazing kindness and is such a giver. Such an amazing giver and at this point, I have just absorbed her great kindness as a healing gift. She even gave me a sunflower plant not knowing that I’d written about being the seed a few days ago. Not knowing that I am intending to give my children a sunflower seed so they can think about how they are going to grow and develop this year in themselves (that was in response to astronaut Chris Hadfield’s comments mentioned in a previous post). We are also going to plant some sunflowers and watch them grow. Sunflowers have always been my flower and I’d also written a poem called Sunflower back in my 20s that was one of my signature poems. My friend knew nothing about all these sunflower connections when she gave me the plant. It was so very obviously mean to be. After this fairly amazing time with her, I just felt drawn to go back to the rock where we’d met and complete the process. That’s what took me back to Whale Beach.

After the crash, the waves flow over the rocks like spillt milk.

After the crash, the waves flow over the rocks like spillt milk.

Anyway, as I said, I have spent many, many hours sitting on these rocks. Back in 1997, I at on these rocks while recovering from brain surgery wondering when but more likely if I would ever get better. It really looked doubtful that I would ever get my old life back again. The road back to so-called “normal” was just way too steep…an insurmountable climb!

All the quirks and idiosyncrasies of my hydrocephalus haven’t left me entirely but they have virtually disappeared and I can usually compensate for my remaining weaknesses.

This gives me much hope that we will contain and manage this lung disease and that I will heal…at least enough!

It is a huge leap of faith and very, very scary for me to step out and put my hand out and say: “Please God, heal my lungs and save my life.” Yet, God is my father. He loves me. At the same time, I know that he doesn’t always intervene and we all have to die one day.

You could say this is a bit of an aside and yet it’s not. While I’ve been savouring the absolute beauty here, I’ve also been stepping over cigarette butts stubbed out against the rocks and left behind. It is so hard for me to comprehend how anybody could light one of those cancer sticks consciously and actively destroying the very same lungs I’m fighting tooth and nail to save. These same morons are also littering the environment.

We live in a strange world.

I put down my pen and return to my camera opting to film the wave instead. As much as you want to freeze the wave in 6 x 4, a wave is a living, breathing, and above all else moving experience. It’s not static.

It’s like picking a wildflower and sticking it in a vase. You’ve destroyed what it is. Its spirit has gone.

A wave doesn’t sit still.

I drove home.

It was low tide and I took the dog down onto the mudflats for a walk. After being so absorbed in the turbulent even aggressive surf at Whale Beach, Pittwater was so completely serene almost standing still with just the smallest of ripples caressing the surface. It was so peaceful.

I couldn’t help but notice the contrast between the two. Pittwater reminded me of a Bible passage I have struggled with for many, many years: “Be still and know that I am God” while at Whale Beach I could hear Christ’s impassioned plea from the cross: “My God! My God! Why have you forsaken me?” Pittwater is only round the corner from Whale Beach symbolic perhaps that peace is only round the corner when we’re feeling all consumed by troubled times. Relief isn’t far away.

I must remember that!

xx Rowena