The Wide Blue

Oops.  I really AM having a break from the blog, but I just had to share this with you…

I’m listening to  ‘John Dunbar’s theme’  by John Barry, far above the Pacific Ocean.  The evocative, heart stringing melody pulls me into a contemplative space. The clouds out my window look like snow drifts on blue ice.  It is so beautiful.  My heart aches with the beauty of our world. I can barely understand how it is that I am flying through the blue atmosphere of this planet, eye on the curve of the horizon. Feeling so far from lost. Home in the clouds, in the air.  On my way.

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The first time I remember being in a plane was when I was around seven years old. I was clutching hold of a single rose, struggling to make sense of the painful lump in my throat.  If I close my eyes I can feel the shape of the cellophane stem in my hands, I can feel the sadness that overwhelmed me.  My best friend Dana had just said goodbye to me in the airport and given me a rose. The singularity of that flower made me realise; I was leaving the safety of being of ‘she and me’. It is the first time I understood the loss of friendship.

The strains of losses, goodbyes and farewells fill the spaces in airports and airplanes. Almost every soul on board this flight must have said goodbye to someone, somewhere.  There are heavy hearts and happy hearts, hopeful hearts and the heartbroken.  We are bound for a new destination and whatever might come.  I wonder about the stories they hold, all these people.  I wonder who they are.  What are they carrying on board today? Not their luggage; their heart burdens.  Are they as fortunate as I am? Do they have a compass for home? A warm nest of their own? Will someone be missing them tonight, reaching out their hand to find cool sheets where their warmth used to be?  Will someone be wishing they could hear them breathing, wishing they could rest their cheek against their back?

I sometimes feel so unfortunate.  I see how things are changing for me, how much less mobile I am, how much more I am struggling. And it makes me feel a strange combination of desperation, frustration and sadness.  And then, here I am, looking out the window; the arcing blue sea shifting into powdery sky and I feel calm. Blessed, even.  I get to do this. See this. Be here and have thoughts and words and experiences.  I get to make memories with people I love.

I can’t give you all the beauty outside my window; I see it, but so many people won’t.  All around me eyes are closed to the view.  People shift in their seats, or resolutely shut their eyes to the gift just there, outside the window. You have a window too, somewhere there, where you are. Have you looked out of it lately? Taken deep slow breaths and let the beauty fill you up?  I quench the parched terrain of my sad thoughts when I look outward. Don’t look down, look out. Look up. Just, look.

Listen to this music. Come, get lost and found with me, out in the blue.

(…and just in case you are wondering, that friend and I are still friends.  We found each other again at 19, saw a bit of England and a bit of the Netherlands together.  And twenty years later, we email still.  Hi Dana!  True friendship is never lost).

Between the Devil and the Deep Blue Sea

For aeons, people have traipsed to the sea, looking for a cure for their ailments, a tonic for a weak constitution. England’s coastline was dotted with seaside health resorts where people could ‘take the air’ and remedy their ills. I used to wonder about it, as a teen, reading Austen, what was it about the sea that made people think it could make them well?  And how did the sea air even make it through their substantial swimsuits?




And then, in my own way, I too came to the sea for some coastal therapy. In need of a break, a rest. A holiday. We holed up in our Tongan vault-ceilinged fale by the aquamarine ocean, breezes fanning our night time slumber. Just a few steps to the sea. White sand, shallow, calm seas, kissing the shore in an effervescent line. The rhythmic hushing my soul has craved, without me even understanding that I did.

I am the child of a Bay of Islands girl. My mother was born for the seafaring way; I still can picture her on the bow of a yacht, eyes closed and face tilted to the sun. She loved the sea and it’s close cousin, the coast. I have never shared that love. But here, beside the gentle sloping sand. Cradled in the warm and friendly cocoon of a tiny island, the sea is working it’s magic on me. Is it part of my DNA, this sea?

I swam in the ocean today. Twice. Floated like a water baby under the skies, rolled over onto my tummy, head pillowed on a lilo, idly watching the sand. The shore edge was sprinkled with mother of pearl fragments, glinting in the sunshine. It is so beautiful here. And in that water, for a time, I am weightless and free. For the first time in over five years, I feel the burden of my body lifted and I notice the dissolving of my ever present discomforts.

Did the ocean give me that reprieve?

I was floating with the current across the shallows. My vision was perfectly clear, my dizziness was gone. My head didn’t feel like an enormous pressurised bowling bowl, balancing on my neck . My joints and frame felt like they had when I was a small child. I was free of the concerns over my bladder and bowel. My stomach wasn’t cramping, the nausea was gone. Even the burning prickling neuropathies seemed numbed by the cool water. I was buoyed up. Carried along like a child. And it occurred to me, suddenly and shockingly, that I felt well. For a few too-short minutes, I felt like I belonged in my body again. I didn’t dare move a muscle, it was sublime perfection, feeling that way. I tried to memorise it. I tried to ignore the fears, tapping at the inside of my mind… don’t get used to it… it won’t last… oh my god, how can you go back to how it was after feeling like this? I just lay there, clinging to that lilo, staring at that one section of glinting sand floor, arms warm under my face, hips swinging free in the water. I lay there and soaked it up, that feeling of wellness. And a line from my friend Wordsworth (Lines composed above Tintern Abbey) crossed my mind:

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“In this moment is life and food for future years”.

It’s cool in Tonga at this time of year. There are soft breezes and gentle temperatures in the early twenties. The ocean is cold when you first get in and then, you acclimatise and it becomes warmer than the air, an enveloping presence. Holding you up, rocking you in it’s benevolence. I am loving my new found friend, the sea. I didn’t know how therapeutic it could be.

For at least five years, maybe longer, I have been fighting a sebborhoeic dermatitis outbreak on my scalp. I suspect it is from all the strong medications. But whatever the cause, it has become a painful maintenance chore, a difficult distraction, an endless itch. My head regularly breaks out in sores that crust and weep. And I am always painfully conscious about the flaking snow that may be accumulating on my clothes, or the scabs that might be trapped in my hair. I have tried what seems like every known remedy. Sometimes I get short term relief, but then it goes back to the way it was. So when I arrived here, I was nervous about getting my poor sore head into the sea. I lay on my back and gingerly let my head ease back into the water. I could feel the sting of the salt on the tender raw patches of skin. That gave way to a pleasant tingling. Now, the scale that has clung to my head is lifting. Underneath it, new, calm skin. Each day I am in the sea it improves.

Is this reprieve from the sea, too?

I think about bath salts and I wonder if they are an attempt to bring the therapy of the ocean into our bathrooms. I think I will have to try them when I am back home. I wish I was a millionaire and could transport all my online Dysautonomia support group friends to a place like this. Somewhere they could all ease into the soothing benefits of the ocean. Somewhere they might, even for a few moments, get to feel well again. My eyes well up with the complex dichotomy of gratitude and that old frustration that I cannot make the world turn my way, I cannot fix it, I cannot wave my magic wand.

I woke this morning trapped in the old familiar state. Desperate to get up, but too dizzy and achy to move. I fumbled for the bottle of water and my pills. I stared at the mosquito net shrouding my bed and wondered what I usually wonder: How will I manage today? And the thought occurred to me. I am between the devil and the deep blue sea.  I know which I prefer.
I will lie in the ocean. I will float in the sea.

I hope that you will find your reprieve, in whatever form it comes for you.  Maybe it is a laugh with an old friend, a book that transports you, making art or taking heart from a song.
I hope that you will recognise it when that moment comes, your moment of life and food for future years.

And I wish that I could make it last for longer. For all of us.


PS.  It turns out there are scientific reasons why…