You can close your eyes…

She looks so relaxed, on the first day of her island holiday. Gently swinging in the hammock, a mug of chai tea cradled in her hands; those eyes are tired, though. She looks outward to the ocean.

It is glassy today, clear as air to look into. If she were out there wading in the shallows she would see fish, lazily cruising in the warm edges of the reef. On the horizon, a solitary white rimmed island marks the separation between water and sky. She saw a whale breach out there earlier this morning. The sum of all these things, warm air, calm seas, chai tea. It is all in stark contrast to her inner world.

She tries to let it all go, all the daily pressure of normal life. All the past. All the words unsaid and things undone. Lists unchecked.  It is hard to relax, and it should be simple. It is hard to carve out time where she can be nothing but herself. But she has, it is here; now, for the next hour or so. She sips on her chai, letting the cinnamon and spices swirl into her senses. The flavours of calm.

She’s not sure if she wants to spend time with herself after all.

Where is she, anyway? Losing herself has happened gradually. Task by task, caring for others. Loving others is a sacrificial pursuit, for women everywhere. Loving them with all she has is a habit of obligation and a daily choice. She didn’t know the cost of it when she signed up, but she knows now. Yet she would have paid anything to have this, have them. This life. And when the fabric of her wears thin and tears into the unwritten contract -of motherhood, of marriage- with hard words, she feels the failure. Sharp. So mean. She never really intends it for them. The words are really for herself. She sighs over it, swinging back and forth in that hammock. She is tired of turning herself inside out to examine it all.

So she walks through all of life in this body; this middle aged vessel of experiences, faded dreams and old philosophies, the mother-wife shell. The girl she also is; so shrouded now, by her roles and responsibilities. She has survived all the things. Her world is secure and her love is strong. Her family are happy. She thinks these thoughts like a mantra of protection. They have made together exactly the life she hoped for, the one she yearned for all those years ago, wishing into her teacups for a family of her own.

Her eyes close and she lets her head sink back against the woven hammock.

There is a woman here on the island, travelling alone. Her husband died three years ago, and since then, she has retraced the steps of all the travels they did together. She watches this woman in the restaurant, alone in her grief at her table for one. She wonders if there will be release when she has completed her solitary itinerary. She wonders if the goodbyes and the remembering are helpful. She wonders if she could be so brave. Life, on her own again. It makes her shiver in the tropical heat. No.

She thinks about her little family, out on the glassy ocean, casting handlines into the water in the hope of bringing home fish. She tries to imagine the joy and horror as they reel in slippery living creatures. It is the first time her children have been fishing. They are having much-yearned-for quality time with their daddy and she is struck by a sudden pang of… what is that? Jealousy?  He’s been so busy lately. He is a great Dad. She chose him for them and that thought makes her feel proud satisfaction. She did that. A gift for their future selves and developing psyches. It was a good choice. She’d choose him all over again, she knows it.

The girl she is, takes a big deep breath and sighs it out into the warm air. She is okay. No crises to avert this afternoon. A small smile contracts her cheeks upward, crinkling the skin by her eyes. So fortunate to be here, this day, in this way, in this place. She aligns her girl and woman selves and blows across her warm tea. Seriously, she thinks. The best way to relax is to stop thinking altogether. She reaches for her headphones and scrolls through until an old favourite fills her consciousness. Yes. You Can Close Your Eyes by James Taylor. Her empty tea cup now nestles in the sand. She drifts out of her messy mind on a tide of chilled harmonies.

She is the picture of relaxation, that woman on the hammock. Eyes closed, headphones on. The late afternoon quiet, deep upon her. Slowly, the tide creeps up the sand and the day sighs to a close. She muses softly about all of her sisters-in-arms, shouldering big burdens and costly contracts of love.

the sun is slowly sinking down
and the moon is slowly rising
so this old world might still be spinning round
and I still love you.
So close your eyes
you can close your eyes, it’s alright
I don’t know no love songs
and I can’t sing the blues, anymore
but I can sing this song
and you can sing this song
when I’m gone

Post Script
James Taylor and Joni Mitchell. It was the soundtrack for my holiday week; for me it is the song of parent to a child, or an adult to themselves. I love it so much.  Have you heard these two singing together before? Happy sigh…

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.

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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.

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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?

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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.

 

What would you do?

I’ve been doing that thing patients do.

Waiting.

I’ve been doing it impatiently, because I’m like that. I goes like this. I’ll be going through my day and the thought occurs, as it regularly does:

How can I keep going like this?

Which always leads to the next thought…

Am I doing enough about it?

What would you do_(1)Well, I’ve been fighting for years to find someone who will investigate the cause of my Dysautonomia and consider treatment.  Last year, I found two great immunologists. Which brings me to the waiting part.  It’s like a circle of impotent wishing.  Drives me a bit bonkers, but that is the price you pay for not paying a price when it comes to medical care. We have this free medical system here and I am so grateful for it (because by the time I got around to organising Private Health Insurance, I was already deemed ‘uninsurable’).  If I’d been living somewhere else (like the US), my situation would be dire.

So I’ve been waiting (albeit impatiently!) for the immunologists to get back to me about the possibility of IVIG.  At the end of last year I had the tests they were hoping would offer a compelling base line. But the tests didn’t provide the strong results we hoped for.  It is one of the most incredibly frustrating features of Dysautonomia, that our tests don’t always catch our bodies behaving the way they do.

My tilt table test was ‘unremarkable’. Instead of my trademark drop in blood pressure and a heart rate that drops through the floor, my blood pressure was high.  The entire duration of the test was a painful torture for me, due to the pain in my pelvis and hip when I am weight bearing. I suspect the pain brought my blood pressure up, buoying my system into a false negative TTT.  But you don’t get a ‘do-over’, and even if I could, the pain issues I am having are still being explored, we know it isn’t structural; it is possibly neuropathic.  Another needle in the haystack.  Either way, it’s not going away overnight. By contrast, the gastric emptying study showed “an abnormal pattern of gastric emptying and small bowel transit compatible with (her) known Dysautonomia”.

And I am only guessing… but I think it is clear that more significant results would have made for a different outcome.  Fortunately, and sometimes unfortunately, the medical system functions on objective data. That’s just the nature of the science.

I had a phone call last night from one of the Immunology outpatient doctors at Auckland Hospital. He was a lovely person who was very thorough with all the details.  He outlined the plan for me. I will start a six month course of methylprednisolone pulse infusions in February.  If I respond well to the steroids, this will give us a better indication of whether or not I have an autoimmune aetiology.  That just means that we will try a ‘suck it and see’ approach.  If this treatment works for me, it points towards my problems having an autoimmune cause.  It has been tricky to establish this point because the tests I have had done have not shown auto-antibodies for the usual culprits.  The main one, the Acetylcholine Receptor antibody, is negative.  According to Dr Vernino, 50% of his patients with presentations similar to mine, are sero-negative.  That’s like one in two. The flip of a coin. That’s why I haven’t been able to just sit with a doctor response of ‘it’s not auto-immune’.  I guess I need proof that it is not, just as much as proof that it is, before I can put that theory to bed.

I am also desperately attached to the idea that my problems might be immune mediated.  I prefer this possibility to many, despite the fact that treatment is not without risks.  I prefer it because it actually has a treatment pathway.  That’s a hope-inducing fact. Apart from my pacemaker, I’ve been languishing in the progressive no-mans-land of Dysautonomia, without treatment, for five years.  My symptoms are ‘managed’ (ha!) with a range of medications.  But none of that is addressing the elusive cause.

If something was wrong with you, if it changed your life and had an impact on your family… would you be able to sit back and accept the line; ‘We don’t know the cause/it is too hard to find the cause/ just accept that you have this thing we don’t understand’?  Well, I can’t. I’d rather go through the frustrations and exhaustion of searching for answers than just accept the ‘We don’t know’ line.

And maybe that is a defect in my personality. Or maybe it is a strength.  Either way, it doesn’t feel like a choice to me. I welcome the opportunity to try methylprednisolone.  It is the first proactive thing that has happened for my condition in five years. And if it doesn’t work?  I really don’t know what is next. If anything.

Maybe that is when I have to look at accepting some things. And that makes me want to drop to the floor in a full tanty. So I’m not going to think about that unless I have to.  Is it wrong to search and search for a cause in the hope of arresting the nerve damage?  I’ve already seen the ways this has affected my body.  I don’t need an imagination, or the facts, to see where it is headed.  If I can find something that will halt the slide, I feel like I should throw everything into that search.  Isn’t it what most women would do?  It’s not just about fixing this for me, it is about finding the best way through the maze for me and for all the people in my world.  It’s not self-indulgent to think they need me.  They do.

What would you do?