Chasing Clouds

The colours of the Yarra Valley in winter are muted. Misted vistas of gums and mountains …and the vines, stacked in soft green rows against the ochre earth. Layers of clouds roll across the skyscape, as if in competition with the beauty below. Look up!  Look here! They roll and twist, jostling for the most beautiful arrangement. Australian skies are big skies, the cloud banks dwarf the landscape. I was mesmerised by them.

13427956_10154373946625815_27677651972801694_n

I went to Australia in search of respite. Thirsty for a change of scenery, a change of mindset, just a change from the daily drudge. I came here hoping for a new perspective. Hoping, if I am brutally honest, that I would want to return home again at the end of my holiday.

On Friday, with my eyes downcast, I watched the toes of my converse lace-ups scuffing along the back streets of a country town. It was early. I’m an urban girl, so to me it seemed utterly reasonable to go in search of an espresso at 7am. I moseyed off along the sleepy streets, following the blue mountain ahead of me.  Tiny white curlicues of mist tickled at its edges. The night blanket of clouds was rolling back, ushered away and up by the sun. I felt transfixed by that small space of heaven, where the gold met the brooding gray. My breath misted in front of me and I felt that familiar heavy consciousness; I recognised that I had brought all of my urban angst here with me. Trailed it behind me as I jet-streamed over the Tasman.

I tried to slow my breathing, to slow my thoughts. I tried to name my anxieties and let them evaporate into the gilt of the new day.

13435524_10154384770850815_6793310085815845320_n

The rhythm of my feet brought me past historic cottages, iron fretwork fencing, elaborate brickwork, local artisan studios, darkened cafes and gift shops. The air was crisp with the aroma of fallen leaves, the mountain reassuringly squat above the little town. Golden leaves gathered into drifts at the edges of the main street, swirling in little eddies down the alleyways. It was an old town, sure of itself and its place in the midst of this popular valley. So many gifts of nature and such abundance of produce. The tourists flock here year round, drawn by the wineries, galleries and a slower, more genteel way of life.

An elderly gentleman waved me in through his cafe window. He was a friendly relic from the hippie era, long hair and a handwoven hat. His old eyes seemed to know too much about me, but I stepped into the warmth regardless. He asked if I was looking for a hot drink. Gratefully, I accepted his offer of a cup of organic brew. We talked about his pretty spot there, overlooking the avenue of oak. He rustled up my coffee and began chatting with his next early riser. I fell into silence with my only my thoughts for company; contemplative. The benign presence of kind strangers was a comfort. I blew the steam from the top of my cup and asked myself the question that had driven me here, the haunting of my peace. The crossroads of my heart.

What choice do I need to make?

13445781_10154384769740815_144847632078476642_n

There is a song I have loved for a long time. A woman’s song. The lines of the impossibly beautiful melody danced through my mind. ‘Both Sides’ by Joni Mitchell. It’s about the juxtaposition of perspective. It’s innocence vs. experience.  It’s how I feel about life right now. About wellness and illness, about mothering, being a wife, being in my forties, about my career. There is a bitter/sweetness to the understanding that life is all of the things; the beautiful and the frustrating, the happy and the unspeakably sad.

I spent a lot of time on that week away, looking at clouds. Chasing the kind of girlish freedom I’d had, once upon a time, when I was unfettered by responsiblities. It took most of the week for me to come to the realisation, once more, that all of my life has been borne of choice. I’ve chosen my reactions when I didn’t have control of circumstance, and I have chosen my life’s direction. The biggest choices are already made. I wasn’t choosing ‘for now’ I was choosing ‘forever’. Now, I can choose how I live with those choices. With an open heart, seeking the gilt edges of dark clouds, or with my eyes shut tight against the beauty that might be there.  Love is hard. Life is hard.

As I blew the steam off the top of my cup, staring out through the glass panes of that little coffee shop, I chose to let the light in anyway.

I wish you the kind of clouds that remind you of angel hair. And also the kind that take your breath away with their severity and stormy brooding. I wish us all, the strength to look up, and forge ahead, honouring the choices of our hearts.

Are you like me? A tired mum, frazzled wife, maybe a bit lonely, hopeful, thoughtful …are you yearning for more ice-cream castles in the air? Here’s to you, and me, and the knowledge that what will be, will be.

 

Mothering Myself

This morning I woke up in my hotel room, feeling rested and calm. I stretched one foot out to the right, one arm out to the left, sliding them along the crisp white hotel sheets that I would never have to heave out of the washing machine.  The smile spread from the corners of my mouth all the way to my ears while my eyes stayed shut. It was beautiful. I’d gone to bed at 9pm and my watch informed me that eleven hours had passed between. Eleven. Deep sleeping hours!

For the good of our souls, sometimes just need a break from all the relational roles we carry.(2)

I woke, packed up my things and prepared for the day. I’m down in the hotel bar now having a coffee before I meet the beautiful Sarah, in person, at last. She’s an all-time favourite blogger of mine. The coffee was made for me by a barista who spoke about the complexity of the bean with an earnestness. I smiled at him, but thought about how I will not have to stack that cup in the dishwasher, or refill a kettle, or check the expiry date on that milk.  Just drink it.

I am such a fan of Sarah, as a writer and a person. Meeting her is very important to me.  I can’t wait to wrap her up in a big hug of thanks. To enjoy food and conversation with her and Annette from I Give You the Verbs! Dear Kate had to go and do some very exciting new work stuff, but you can check out her blog here (next time, Kate!) After our bloggy brunch, Miss Annette and I are lighting off for the Yarra Valley for a girls weekend. We’ll take the meandering way, and she promises that I can stop and take pictures to my heart’s content along the way.

Sarah, Annette and Rach
Sarah, Annette and Rach

This trip to Melbourne is something I’ve been longing to do for years. A chance to revisit my past, reconnect with people I haven’t seen for years and finally meet some I’ve been talking to online for a long time. But even more than the gorgeousness of all that, this trip, for me, is all about respite. I just needed to take some time out from all of the ‘adulting’ and be me, on my own, for a bit. The Rach who isn’t looking after anyone but herself, just for a few days.  I need to mother myself.

I need to stretch out, on a big big bed, all alone. To stand next to my soul sisters and spread my arms wide to the sky. To sleep and wake when I feel like it. To please myself doing anything I feel like doing; compromise free. I’ve explored, I’ve shopped, I’ve chatted and I’ve been blissfully quiet. I’ve drunk wine, I’ve taken a trip down memory lane at my old boarding school, I’ve eaten anything and everything I feel like eating without a single bite being cooked by me.

13423725_10154373945830815_6628180717532856581_n

13427956_10154373946625815_27677651972801694_n

13435553_10154373948535815_4085384062838255891_n

13466419_10154373950745815_1914420783551071616_n

It’s been gloriously selfish and deeply important for me to do all that.

When you become a mum, you don’t know that you are becoming something other than an ‘individual’. It’s something you have to learn. And once you have learned that by heart, there won’t be respite for a long, long time. My kids are now 8 and 11. The teenagers are now 17 and 18. The family has grown to a point that I’ve been able to set them up to manage their lives without me for a few days. The hubster is doing a stellar job with them. Their schedules are all being met.

I could probably have done this earlier, but I wasn’t internally strong enough to push for it. Sometimes, even with great families, it does take pushing for it. You have to fight for yourself the way you’d fight for your brood.

Respite is something we need to fight for as women, as givers, as mothers and wives. For the good of our souls, sometimes women just need a break from all the relational roles we carry. Freedom to just be ourselves, to turn the nurturing inward. To have a rest from all of that responsibility.  That’s what I’m doing.

I highly recommend it.

It might not be a trip to Melbourne. Maybe, if you have one, it’s a visit to your Mum’s place. Or camping in the spring, all alone. Or a solo movie. It might be a journey to see your cousin, or a drive down winding country roads. Find your respite, sisters of mine. I promise it will feed your soul and bring you joy.

It might be easier than you imagine to make it happen.

Go on.  Tell yourself to have and break and then, for goodness’ sake: go do what you’ve been told!

By What You Give

 

What would you give for good health?  For good health care?

So many patients I have spoken to in Australia and the United States and in more regional parts of New Zealand, struggle in a system that requires them to give more than they have. Good care in some places, depends on your income. I’ve always been a huge supporter of the public health system in this country.  Our hospitals are free for citizens and often the doctors who work in the private sector are also in public. Expertise is shared.  Our local hospital has supported us through my many admissions, surgeries, my husband’s open heart surgery and a few paediatric visits with the kids, for a broken arm and a gastro bug.  We like to think our tax dollar has been well used.  I always send in my feedback, praising the nurses, thanking the hospital for all the many things they do well.  But our system isn’t always fair. See, I live near one of our best hospitals.  If you don’t, life is much much harder.  And given that the catchment area for Auckland Hospital encompasses some of Auckland’s wealthier suburbs, it isn’t exactly equal treatment for all.

In addition, if your health crisis isn’t always acute, your case will be managed by your local GP, or in my case, General Medicine.  I am one of the ‘lucky’ ones to be overseen by the hospital in this way.  Some other local Dysautonomia patients have had their GP’s referrals to General Medicine ignored.  In fact, my cardiologist’s first referral to General Medicine was ignored too.  I have friends from different catchment areas in New Zealand who have been abandoned by their hospital system, simply because the hospital specialists don’t have answers.  It’s been on my mind a lot lately.  There is a little group of patients here in NZ who need better advocacy, better help.  Our situations are acute sometimes and we will head into hospital for a short, or a long stay.  But mostly, our chronic illness is not well managed by our public system.  We are relatively young, we are aberrations, we are outside the norm.

What would I give to change that?  I’d give my time, my energy, my mind and my efforts. And I do.  That is so much, even though it doesn’t look like much, because all of those things are in short supply.   Surviving each day takes a lot of grit.  Making a stand for better care can be overwhelming.  Why is it that sick people must advocate for themselves?  There are so few of us able to speak out, our voice is tiny. It seems like diagnoses need to be intellectually sexy to get attention. Or at least afflict enough people to make them easy to study and treat.  But we are so few, especially in New Zealand.  We don’t have any of those advantages.  Yet somehow, even a small bit of human kindness can’t be offered up with the latest half-hearted-tick-the-box consultation.  If we can’t have doctors who know, or question, can we not have doctors who are kind?

I saw this pithy quote, framed in a poster once on a doctor’s surgery wall a few years ago. It struck hope into my heart.  Despite the fact that his version was text over a picture of a yacht, which made it slightly distasteful (most people don’t ‘get’ enough to buy yachts from their earnings, Doctor).  Despite the fact that I was about to give him hundreds of dollars in exchange for the hope that he might listen to me, the last part of the quote made me think that he understood things.  Important things about the vulnerability of patients and his responsibility to give his medical brain to the case at hand.  I hoped he might want to give of his listening ears, to apply his scientific brain to my situation.

Screen Shot 2014-07-04 at 9.38.45 am

Apparently, Winston Churchill never said this.  It’s the kind of thing he might have said, but the closest verifiable quote from him that relates to this is the following:

“What is the use of living, if it be not to strive for noble causes and to make this muddled world a better place for those who will live in it after we are gone? How else can we put ourselves in harmonious relation with the great verities and consolations of the infinite and the eternal? And I avow my faith that we are marching towards better days. Humanity will not be cast down. We are going on swinging bravely forward along the grand high road and already behind the distant mountains is the promise of the sun.”  Winston Churchill

That particular doctor did not in fact, know how to give.  He was much like the bogus quote.  Fake.  He nodded and kept his ears shut.  He said ‘yes, yes…’ while he meant ‘no, no’.  He pressed his groin up against me while I was being examined and was offended when I reacted badly. I paid over all those dollars and left the surgery.  Nobody ever bothered to call me back.

I’ve had so many experiences with doctors who earn their living by what they get, yet have forgotten how to give.

And I have had some outstanding doctors.  Who have listened and talked with me, not to me.  I love doctors who don’t assume me to be stupid just because I can’t remember every detail from years of complex medical history.  Who are prepared for the possibility that a non-doctor might have a few brain cells, too. Doctors who write more in their notes while I rifle through my paperwork to find the exact answer they seek.  Doctors who ask good, open ended, probing questions and who are open to exploring suggestions.

But until recently, it had been a few years since I have been in the rooms of one of them.  After the initial flush and flurry of my dramatic Tilt Table, I was a bit of an exotic patient.  Doctors liked to see what my body could do.  I welcomed the interest, it was a chance to talk and raise awareness.  The pacemaker insertion underlined my cardiac issue and if I happened to be at the GP’s office to discuss, say, my cold, I would see the latest rotation-doctor’s eyebrow raise as he read my notes.  And then, another examination, standing obs, sitting obs, explaining.  Then cardiology successfully transferred me to the General Medicine service of our hospital, so that they could coordinate my care between various specialists.  This is because the Autonomic Nervous System overlaps into many medical disciplines and my problems were progressing into a range of areas.  My new General Physician was exceptional.  His name was Dr David Spriggs.

What makes a doctor exceptional? They have to be smart.  But actually, that is a ‘given’ with all doctors.  So what else?  They have to be the other kinds of smart. Intuitive.  Good listeners.  Engaging.  Thorough. Curious. Open minded. They have to be able to hold eye contact, so you know they ‘see’ you.  These things matter.  Dr Spriggs was all of those things.  He had an amplified stethoscope to assist his hearing.  And I often thought, he may have trouble hearing, but it never impedes his listening.  When we came to a hiatus with my treatment, he worked with a talented Registrar to prepare a presentation about me for the Grand Round.  He wanted to canvas his colleagues for ideas.
And some of his colleagues did have ideas.

But then, the hospital moved Dr Spriggs elsewhere and my care was in the hands of the ‘new doctor’.  He summarily dismissed the ideas offered in the Grand Round and said the approach he had decided on with me was, to simply “watch your progression”.  We’ve been with him for nearly two years.  And my illness has progressed.  It hasn’t been much fun for my family to deal with the progression.  It’s been very distressing for me to watch functions deteriorate and disappear, knowing that it is a result of nerve damage that probably won’t be reversible.

We tried to be good about it.  Who are we to judge the approach of the new doctor, any doctor?  We don’t have years of medical training.  I might have read widely on the subject of Dysautonomia, but that doesn’t mean my arts-brain can make good enough sense of everything I read.  We have been diligent and respectful.  Even in the midst of my last conversation with him, I was quiet and respectful.  Determined.  Angry, even.  But still respectful.  I even thanked him at the end of our conversation for the time he had spent talking to me.  Through gritted teeth, but still…!

Then we decided to bite the financial bullet and seek help privately.   And that is how I met my new, new doctor.  Last night.  He doesn’t work in my speciality, but he wants to help me coordinate my care.  He isn’t familiar with Dysautonomia, but he cares enough to read my notes and respond with compassion.  For our first meeting, he cared enough to actually do prior reading,then he made clinical notes about me and devised an action plan.  Almost everything on that plan was to be actioned by him. My hubster’s warm hand, squeezing mine, told me it wasn’t just me that was amazed.  I am not sure if my hubster breathed during that consultation, just in case it was a dream.  Dr Brandon Orr Walker is an endocrinologist.  And he is also a decent, kind person.  He embodies exactly what good doctors should be.

It did cost money to go and see him.  A lot of money.  But I don’t begrudge him one cent.

He might be making a living by what he gets.  But he is making my life matter, by what he gives.
Our system may not be working, but some doctors still do.