A Ballet of Pavlov’s Dogs

 

Photo credit: Ron Schmidt www.looseleashes.com
Photo credit: Ron Schmidt www.looseleashes.com

 

My writing mojo has been off leash lately.  It’s gone and done a runner.

I’ve been sick in the more ‘regular’ sense of sickness. One run after another of yucky bugs, bacterial and viral. My third round of antibiotics. It’s nothing compared to how I was before; could be worse. Blah. Still feeling like a germ ball. Thankfully, I’ve had the internet to keep me entertained. Some of my friends on social media post awesome things. Entertaining, political, thought provoking things. Some of the bloggers I read wrote some great stuff this week too. This resonated with me so much. And when I’ve felt too yuck for all of that thinking, there has been that old internet comfort of window shopping for… shoes!  Looking at shoes, dreaming of shoes. I have developed a bit of a passion for shoes, probably due to their scarcity in my big-footed-girl-world.

It's ridiculous and vacuous. I know.(5)

It’s not an interesting thing, but I do love them. So anyway, there I was browsing shoes, in my congested, mouth-breathing, heavy lidded state when I passed a pair that had a style name I recognised; Lexie. The name of one of my son’s fantastic karate senseis (I wonder what the plural for sensei, is?) Lexie is a dignified, wise and fascinating person who is teaching my son so much more than karate.  We think she’s great. I saw the Lexie shoes. I fired off a quick and first-world-shallow message to her facebook account, something along the lines of ‘saw these shoes and thought of you.. tee hee’. And as happens with Lexie, within a few sentences, we were discussing the bigger issues in life. Education is topical today because of this article.   We agree that something needs to change in our schools.  At the end of our quick exchange, she sent me something I HAVE to share with you.

Please watch. Share. This. All the yes. This is exactly what is needed so we can extract the human race, our beautiful, creative, questioning, thoughtful selves, from becoming, as Welby Ing so elegantly put it,
“…a ballet of Pavlov’s dogs”.

Disobedient Thinking.  Intellectual Disobedience. Don’t just sit there, think something.  Ask something. Something all your own. Or something that piggy backs off something someone else thought. Something to transcend shoes and religion and educational beaurocracy.  Because being creative really is the most beautiful precious thing we can do. It’s how problems get solved.

I was never taught that my own disobedient thinking was a “precious thing” but I did learn it.  It was the pathway to my independence, to mental freedom. It was the harbinger of self-knowledge and self-acceptance the beginning of discovery. Ing is so right. I value this precious gift, in myself and in all the children I have ever taught.

Rebels of the world unite!

Hello From the Other Side

In Wellington airport the other day, I was flicking through my internet stream. And I came across this awesome Rolling Stone interview with Adele, have you read it?  Her voice sends vibrations down into my reptilian brain. She moves me. She’s amazing.  But I was a little relieved to read that her new song “Hello” isn’t about another lost love, it’s about her younger self. It really resonated with me, because I was about to fly into Sydney, the land of my ‘old self’… (who is really my young self, suspended somewhere in time). My passport is in my maiden name, so every time I looked at my boarding pass I was seeing my old name, the name of that Sydney school girl. It all conspired to make me very nostalgic. So on the plane I wrote this little reflection piece. Thought I would share it here…
because I think Adele tapped into something universal with her song.
If you could call yourself twenty years ago, what would you say?
Would you warn that girl? Apologise?
Hmmm. I’d try to bolster my old self up.  Give her some encouragement.
She didn’t look like she needed it, but she sure did.
I wish I could go back and give her that.
Anyway… here’s my piece about my two selves. My then, my now.

_____________________________________________________

I used to go walking there, far above the chase, and perch on a rocky outcrop in a blue-green sea of gum. I liked thinking that maybe centuries earlier, indigenous people had sat there, watching the bush fires maybe, or searching for signs in the skies. Maybe they were children, maybe they were not so different to the girl I was, hiding in the wide bush, running from the things she couldn’t shape with words.  My legs were strong then, I would relax my breathing and let them carry me along the barely perceptible bush tracks, avoiding the hostile prickles that seem to typify every Native Australian plant. Stay away!  the barbs and spikes screamed. Yet they sheltered me, surrounded me on my rock. Hummed and buzzed with all the wildlife they sheltered, too. Sometimes I could be there for hours, watching the seconds evaporate, one by one into the heated haze of afternoon. I was the only person who knew about the rocky outcrop. Just me. No one ever replied to the chalky poetry I wrote on the rocks, stone against stone. There were never any signs of any other person but me. Yet I felt the ghosts of the aboriginal children who sat there too, kept from me by time alone. In the bush I was anonymous. Alone. Free to think my thoughts and ache my pains. I loved it there.

Sometimes I could be there for hours, watching the seconds evaporate into the heated haze of afternoon.

Today I am flying back to the city that cradles my rock of anonymity, a small space amongst the wide Ku-rin-gai Chase National Park. I haven’t been there for so long. Maybe the rock has been discovered by another person by now. Maybe the bush has changed so much I would never find it again. The landmarks I used, now grown and burned and reshaped in the decades since I walked there. Strong on those young legs. And there wouldn’t be time anyway, I tell myself. I couldn’t absent myself to go bushwalking alone.  I am scheduled. Planned. There and back. Quick trip.  Short stop. Turnaround.  A thought panics my mind. Maybe I left my girl self on that rock. I have an urge to find her again. To see the banksia and gumnuts and breathe the eucalyptus in the air.

I remind myself that nothing ever stays the same.

I didn’t. I think of my internal topography. The rifts and seismic shifts of the years between. The person I have become, so far from the girl on the rock.

Soon, the driver I have never met, will hold up a placard with my old name on it. The name of that bushwalking poet. It must be the strangeness of that, making me nostalgic for her. She’s had two other names since then, two more selves layering over her original self.  She was so afraid of what would come. But she should give herself more credit. I return in her name, a brief walk in her shoes, back in her town. That pony-tailed girl in the white school shirt and grey checkered skirt. She had long brown legs. Strong legs. Walking legs. I will walk on the same bones, strong of heart, towards a new and exciting experience of this place. The questions I don’t know the answers to, the questions I won’t ask, will hang, palpable in the air. I will be patient. Wait until I am at the studio. Prepare the strength I will need to walk in my body, proud of who I have become. Because confidence is never as easy as it looks! There will be no sign of that girl, troubled and stormy, hiding on her rock in the vast space of the Australian bush.

Sydney will feel so big and busy. It always does. Everybody bright and smooth and slick. The cars so fast, glossing across the flat wide roads. It’s an efficient city. No pause for poems scratched on rock faces. For ancient faces. I turn inward and begin to sculpt my outward self. There will be expectations and I don’t know what they are, but I will smile and read the social cues I find. I will joke and try not to say the embarassing things I often blurt out. I might talk about the Sydney I used to know, so long ago.  I will stare down the blank iris of the camera and imagine myself within it. Caught in a nanosecond, angles and tilts, light and shade.  I will stand tall. Kia kaha.

And while I am doing that, the girl inside myself will look out across the Chase, somewhere north of here, back in time. Somewhere between a rock and a hard place, she will find a pathway through. If I could, I would wave to her, out there on her rocky outcrop. I would wave to her and tell her I’ll see her on the other side of twenty years. Older, wiser, taller, kinder.

Hello from the outside
At least I can say that I’ve tried
To tell you I’m sorry
for breaking your heart

But it don’t matter, it clearly
doesn’t tear you apart

Anymore

lyrics from Adele’s ‘Hello’
You can listen to the song here:

Words Fall Out

If we’re lucky, it visits us a few times before taking us away; Death.
I remember the death of our dog.  That first aching glimpse into the yawning chasm of ‘gone forever’.  And the death of a grandparent; quiet censored whisperings of adults and the hurried ushering of the children away from the coffin.  Gone forever. First one person, then a sprinkling of elderly others.  Watching the grief in my mothers eyes spill over into tears.  She didn’t usually cry.  It sent a chill of foreboding through me, seeing her mourn her own mother.  I was fourteen then, and beginning to comprehend.  Death loomed close to my imagination. An irrefutable, unescapable, cruel end and a bitter suffering.

Then, facing the shock news of a car crash, a cousin, close to my own age. Another friend too, another car. Somehow so much more tragic than losing the elderly; more personal, more real.  The horror of knowing they are gone.  Forever.  And it could just as well have been you.  You contemplate all the things that you get to still do that they don’t.  You think about the future they’ll never have.  You marvel at how the birds still sing, but they cannot.  You can’t absorb the fact that everything they were, the entirety of their being, is gone. It’s too frightening. Too close to your bones. A whisper too near to your ear.

You let the tomorrows slowly ease your mortal fears.  Time anaesthetising you from the truth.  We die.  One day that will be my funeral.  One day it will be yours.  We try to forget that immutable fact. We are expert at it.  We close our eyes and batten down the hatches.

We pretend that we will live forever.

But we won’t.

Any of us, at any moment are a hairs-breadth away from it…  why don’t we live like that is so? Why do we pretend?  Diminishing our existence by living as if there will always be a tomorrow?  Another chance? Limiting what we see and ring-fencing our hopes, saving them for another day?

Why do we do that?

Death is on my mind today because this is the anniversary of the day my Mum took her last breath.  I remember staying with her through the night of New Year’s Eve.   She was so tired.  In so much pain. Throughout the night I had counted her breaths, and the terrible pauses between, the gasp and rasp as she fought for air again.  I was terrified about how death would come. When she opened her eyes the next morning, her barely audible whisper: “am I still alive?”.
“You are Mum.  You’re here.  It’s a New Year” her tiny amount of energy collapsed her tiny frame, deeper into the bed, lost in defeat.  “Still here” she mouthed, this time, no sound escaping her mouth as she closed her eyes against the day, the year, the endless struggle of her ending.

I didn’t see her open them again. I left my shift of the bedside vigil and went to sit at the beach.  My brother called me when it happened.  She had gone when they had stepped out of her room. I wondered if she had waited for them to go, to save them the torment of hearing the last breath, of counting the pause that would never be broken with another rasp.

I sat there on the dunes and watched the skies as her spirit flew past.  North to the Bay of Islands, and on to Cape Reinga. She was free.  I knew I should be able to breathe easier knowing that.  But what settled on my chest was a heavy weight of knowing.  She was gone forever.   Forever is a long time to be motherless.  And I cried like the baby I am.  Her baby.  Cried because I didn’t know how I could do it.  This life.  How could I do it without a mother?   I felt lost and cut loose of the only tie that truly binds.  Her freedom became my burden.  My debt to her, paid in grief and measured out across my own forever.

Thank you Mum, for loving me.  I miss you.

I was in the car this morning, coming back from a morning out with the horses.  It had all been far too much for me. I was half-sleeping, listening to the music.  Kellie’s song came on the radio.  My eyes were shut and my head lolling against the head rest.  Her song pops up at interesting times.  I always listen.  Think about her, miss her.  Wish she was still here, wisecracking on my blog, or messaging me about something.  Another gone forever girl.  Breaking our hearts with her absence.  Filling our days with remembrances and regrets for all the things we never said.

I wonder what would happen if you say what you want to say,
let the words fall out
honestly

I want to see you be brave.
(Sarah Bareilles, Brave)

Death is not a palatable subject.  People don’t like to read about it.  We don’t want to be reminded.
We go to such great lengths to ignore the truth and fight the realisations.  We all want to live forever; I get it, me too.  But what I want to say today is hard to read.
Wake up! We all die, people.
My words are falling out.

gone

Don’t push it away, not this day.
Remember.
Do it for the memory of my Mumma, for the memory of Kellie, or for the memory of someone you loved and lost. Do it for yourself, as an act of wilful rebellion against the denial we usually prefer. Live like there’s no tomorrow, in whatever way that would be for you.
What would you tell your children?
How long would you hold your lover’s gaze?
What would you say that needs to be said?
Who would you forgive? Who would you ask it from?
What would you do today?
What would you choose to look at, to feel, to notice?
If this was it.  What would it be?

This song probably says what I want to say in a much better way.  Have a listen to this.  And make today matter.

Calling out My Name

So many exciting things have been happening in my life lately.  Thanks to my friend Sheryn, I made a connection with an organisation called Be.Accessible who are passionate about creating social change in New Zealand. Their vision is for our country to be wholly accessible, so that anyone of us can just, be.  It’s a vision that has a great deal of synergy with my own. My own efforts towards building awareness and understanding in our community here in New Zealand (and with people online everywhere) are all about that.  About promoting understanding and acceptance.

Sharon Davies   Be.Leadership Alumni

I feel very strongly about helping people with ‘invisible’ illness and or disabilities, chronic illness and rare conditions that people find hard to comprehend. I write not just for me, not just for people with Dysautonomia, but for anyone who suffers the torment of not being understood, of finding judgement where they should find kindness.  I use my words so that others might find something they can share with their loved ones. A way to explain what they haven’t been able to explain.  Sometimes it is hard to find the words.

Doing that.  Using my words, has brought me to a surprising place in my life.  My health continues to deteriorate, but my heart and mind are filled with bigger and better thoughts than ever before. I saw my Granny today and she asked “Are you well?” and I could honestly reply to her “All is well with my soul!” I have a purpose and a direction that I never even knew was in my future.  I thought everything was so lost to me. I thought all of those things were out the window. Gone. But here I am, about to embark on something new.  The joy bubbles up from inside, how surprising and wonderful life can be!

Last night I attended an event here in Auckland, down on the waterfront.  It was the graduation for this years participants in the Be.Leadership programme.  The programme aims to mentor people into positions of greater social leadership by providing a year long programme of discussions and learning with some of New Zealand’s great leaders.  Among other great initiatives!  The program cost is $17,000 and this is fully funded for selected participants.  I have applied (squee!) and I am waiting to hear what happens next… so watch this space!

Sharon Davies   Be.Leadership Alumni(1)

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Last month I began writing for the parenting column of a popular Dysautonomia Newsletter in the States. And I met my editor, Ellen, online.  Sometimes when you meet someone, just as it is in person, you just click right away. It was like that with Ellen. She understands me and we have had lots of wonderful email conversations, back and forth from one part of the world to another. She is a wonderful encouragement to me. Recently she sent me this song. It stopped me in my tracks. What a voice. What lyrics!  Thanks Ellen, this song is my new anthem, it so perfectly expresses why I continue to find things that I CAN do.  Life is calling out my name.
Here is Beth Hart singing “Life is Calling”

 

…and, the lyrics…
Sunday morning, the world’s still sleeping
And the rain keeps falling like angels weeping
And I, I feel the tears on my skin
They’re trying to tell me something
I listen

Blues and yellows tap on my window
And I let the night go with all my shadows
And I, I feel the sun on my skin
It’s trying to tell me something
I listen

Life is calling, life is calling
Life is calling out my name
Make it matter, say it louder
Stay alive another day
Life is calling out my name

Perfect houses with good intentions
Where the happy families hide their broken dishes
And I, I hear the scars on my skin
They’re trying to tell me something so
I listen

Life is calling, life is calling
Life is calling out my name
Make it matter say it louder
Stay alive another day
Life is calling out my name

It’s the wind over the ocean
It’s the secrets in the sand
It’s all trying to tell me something
So I’m listening

Life is calling, life is calling
Life is calling out my name
Make it matter just say it louder
Stay alive another day
Life is calling, life is calling
Life is calling out my name

Something Always Sings

 

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This: words we thought were lost.

 

Of late, there’s been a good deal of Spring Cleaning going on around here.  We’re finishing off a little reno, so tidying all that up has spurned some sorting.   Yesterday I sat in a chair in the sun (quiet duties for me, so soon after getting out of hospital) while my hubster photographed things for an auction site. We’re culling. It feels good.
It’s our first real clear out since we moved here six years ago.  It’s good to let go.  Even better to find treasures you didn’t know were even there.

In the garage, he found a box.
“Honey, can you check out this box?  It needs to be sorted; is it a keeper?”.
The box is lurid seventies green.  I remember Mum kept her sewing patterns in boxes like that.  Surely they’re not still in there?  When I open the box, I see that it is only about a quarter full.  No patterns.  I see the kodak imprint on the back of some snapshots, a packet of lace coasters, a journal, a folio clad with swirls of purple, orange and green vinyl. It seems familiar, yet not my own.  Where have I seen that stuff before?

I reach for the photos first.  Pictures of me that my Mum used to have. I see myself at various ages.  It’s confronting, seeing that vital girl.  The sophisticated graduate. And comparing those selves to the sick me I now am.  I put the photos down.

My school reports.  A smattering of them from across the years.  “Rachel is an excellent student with a mature attitude to learning” (aged 8) alongside “Rachel is easily distracted and would do well to focus on the matter at hand. Aim higher” (aged 15).

This must be a box of things Dad gave me after Mum passed away.  Things my Mum left.  I remember vaguely, putting the box he gave me out of sight.  It was too hard, back then.

The kids and I laugh at my school report that shows a string of As and one D. 
“What does Grade: D Effort: 3, mean, Mum?”

“Experiencing Difficulties and Attitude needs Improvement”
“Mu-uum!  What was that for?”
“Physical Education”
My daughter looks at me with a grin on her face.  Her own frustrations on the sports field suddenly making sense, “Oh!”

The box contained some of the cards I had made Mum over time.  Even a letter I sent her from Germany when I was working there as an Au Pair. I didn’t know she had kept these things.

The journal was her own. A journey through her life during the times she lived in Hong Kong, Guangzhou and Beijing.  Then some sad entries about the time back in New Zealand before it all picked up for them again.  I looked at the loops of her handwriting, so similar to my own. I tried to hear her voice talking the words. I could only see her eyes, crinkling up into a smile. I was holding another fragment of her life, like her cup, both so absurdly present even though she can’t be. And yet, there she is, a breath away.  Her perfume in the air and her remembrances in my hands.

I reach for that folio.

Long after my Grandma passed away, Mum would speak of a folio, a special folder that carried the things my Grandma held dear.  Snippets from newspapers, poems and scriptures.  Little things she found or noticed that spoke to her.  My Grandma was a soulful person who carried a deep faith.  My Mum shared the same faith and often spoke sadly about the missing binder that held so many of the writings that inspired her own Mother.  After Grandma passed, my Mum thought her sister had the folder.  She urged me to find it. After her sister passed too, I did ask after it. But her daughter hadn’t seen it anywhere.  It was a mystery.  It seemed to be lost, like that whole generation of girls.

Until yesterday, when it was found, in our own garage, tucked away in a green box.

I wish I could give it to Mum.  She must have had it all along and not realised she did.  I wish I could travel back through time and show her.  I think of my sister and my cousins, I must tell them it is here.

I turned the pages carefully. Looking at the things that helped my Grandma through her most difficult days.  I could see a familiar interest in finding the words to carry you.  I do the same in my search for quotes and excerpts that say important things; in striving to find my own words.  This deep connection with words must be part of my Grandma’s legacy.

I thought again, about handwriting.  About the words we make, the words we keep.  The way my Grandma, my Mum and I stored words for inspiration.  Used words to make sense of life.  Wrote words to excise the pain.  I thought about how Grandma’s collected words could still speak to me, long after she is gone.  Even though I never really knew her.  It made me feel better about my own.  My own legacy.  Maybe my Grand-daughter will read these words one day and understand that I love her, even though I haven’t met her yet. That she is me, carried forward, just as I am the women before me, carrying on.

 

...on the first page of Grandma's folio.   In her own handwriting, these words that reached across two generations.  Thanks Grandma. X
…on the first page of Grandma’s folio. In her own handwriting; these words that reached across three generations. Thanks Grandma. X

…and Climb

Ko te pae tawhiti whaia kia tata.Ko te(1)

I am engaged in reframing identity post morbidity.  That’s the technical term for when you have to accept your sick self after a diagnosis.  Getting used to the new you.  I feel like illness has been gradually wrapping me up in a chrysalis, restricting my movement, constricting my experiences. But who I am is still there.

I think of that girl who defined herself by the things she did.

She danced, drank with abandon to usher in her dutch courage. She enjoyed philosophical discussions, standing around with other smokers, blowing out puffs of smoke with a thoughtful squint to her eyes. She was a good-times-girl with a tendency to sudden sadness, a seeker of fun and a girl on the run.  A subversive rebel. A smarty pants with long blonde hair and an attitude.

She did other things too.  Travelled, worked, studied, excelled.

I feel conceited writing that, even in the third person. But it is true, regardless of how awkward it feels to write it.
And all of the things I did were proof to me of who I was, what I stood for, my standards, my skills, my talents, my way of doing things. So what to do now?  Now that I don’t do much of anything? Who am I now?  Am I really still me, wrapped up in a chrysalis? Am I really constrained from being me?  Does it change the sort of person I am?

No.

Only the way I express it.  Does it change my goals?  Well, yes.  It makes them further away. But it makes them simpler too.

These days, I can’t give myself over to latin rhythms anymore, spinning round the dance floor, part of an energy exchange, lost in the force of motion, moved by the music and the slightest touch of my partners hand. How do you dance without smiling? How do you smile, without dancing? I felt such freedom in that movement, my hair swinging out behind me, weightless and turning and pulling back into the hold. Such a beautiful feeling. Rhythm and connection.  Music. I can still  listen to that music and touch on the sweet-spot. My memories of dance.  I can close my eyes and feel it again.  The air, moving against my hair, my obliques, twisting and turning.  My calves, taut and quick. Me, in heels, skirts and sexy strappy tops.  The warmth of bodies moving beside mine. The slip of the dance floor under my feet. Can I use those memories to help me find myself again?  Is it finding these words that takes me there?

Nor can I indulge in my professional passion of teaching.  Preparing my classroom for the first day of school… the smell of brand new stationery and the energy of potential; just waiting to spring from the air into works of art, words of heart, thoughts and epiphanies.  Kids finding their moment of understanding, seeing the possibilities and running with it.  I can still look through those photos of my first classroom, my first ‘kids’.  See the pock marked desks, the spelling lists and the self portraits, framed against a bright blue cardboard sky.  The book boxes, chair bags.  The smell of pencil shavings and old bananas, smelly shoes and whiteboard cleaner.  The joy of my own desk, my own resources, everything to hand and in it’s place. The clear eyed faces I would know so well, gazing up at me, waiting to begin.  Can I use the memory of teaching to help me learn something new about myself?  Learning requires you to know that you don’t know it all yet, to question, to risk new ideas.

I can’t do things like I used to.  It’s time for a new idea.

I am the person who did those things.  That dancer; who let herself be moved by the rhythm.  So I know how to bend and sway.  How to roll with the ebbs and flows. I am the teacher; I know how to think, communicate, to ask questions.
My goals have not gone away, I just need to do things differently, find new ways to travel through time.  I am flexible, I can work it out. Word it out. I am, who I am.

The chrysalis is falling away.  I needed it to hold me tight so I could grow my wings for flight.  Not dancing, not teaching, not doing. But winging my way into a new kind of being.

Ko te pae tawhiti whaia kia tata.
Ko te pae tata whakamaua kia tina -Tihei Mauriora

Little Guy

Since Kellie‘s sudden passing, my thoughts have turned often to digital legacy.  The footprint we leave behind with our internet published words.  I’m sure Kellie’s family find her words a gift to treasure.  I know I do. And so I decided that I would write posts for my little family.  A small word-legacy of my own.  I don’t see it as morbid, just sensible. We should all consider what might be left of us, for our loved ones if something should happen.
And in the end, something will happen to every one of us.
I still have a few letters from my Mum that escaped being culled over the years.  I love to read them and hear the words she wrote just for me.  Recently I wrote some words for
my girl.  Today, it’s the turn of our little guy.  One day he will be taller than me, with whiskers on those cheeks!  I can’t imagine it.  But I know that even then, he’ll still be my sweet little boy, always my baby!  And he may want to read my words about him.  So, Zed, today’s post is all about you.  Mwah!

Little Guy, when you were born it was a sunny Spring day.  The weather was as hopeful as we were.  A new season was certainly on its way! Your birth was brought forward three weeks because of my health. Just as well really, because the scans were showing us that you were already a very big boy! We arrived at the hospital early and I laboured, thanks to a very kind obstetrician, without pain, for eight hours. Then: there you were, completely perfect, so big and so content.  I was so surprised, it really was that easy, a dream delivery and a delightful baby. You didn’t make a peep.  You just looked up at us while your Daddy and I grinned.  Hello, you seemed to be saying to us.  I’m here, let’s get on with stuff!

You were an alert, contented little guy right from the start.  We had your day bed out where all the action was and you would sleep when you wanted to, oblivious to all the noise.  We knew when you were awake because you woke singing little “traLAla!” songs.  What a happy sound!  Your little face, a picture of happiness, sweetly peeping over the edge of your blankets, your legs kicking when you wanted to see more of things.  You adored the jolly jumper and would swing wide, giggling as you swung back, kicking out your strong little legs for a bigger jump.

No one could make you laugh quite as much as your big sister, I have gorgeous pictures of you two, sharing jokes no one else understood. And from so early, you began to use your considerable skill to get your way.  Those eyes would arch up into a teasing grin and few could resist your charming ways.  As if that wasn’t enough entertainment, your quirky sense of humour has had us falling apart with laughter for years, and here you are, only six. Your presence in our family has changed things around here and we like it!

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You are a unique fella, Zed.  There’s no one quite like you.  You think differently, and I love that.  You remind me of your uncle, so often that you hear me call you by his name sometimes.  Not because you are like him, but because like him, you walk to the beat of your own drum.  You are equal parts charming and mischievous.  And then you disarm us with a sudden display of sweet affection, your arms wrapping around us, your kisses hot on our faces.   You like to dance (in your own special mix of break-dance and ballet) and put on shows, you tell us you want to be an actor.  You are a fidgety fella, but then you surprise us with your attention and composure when you are interested in something.  I will always remember the time I was playing classical music in the car, Bach I think, and I could see your little eyes welling up. “Mum, why is this music sad?” you asked me.  You respond to music with a sense of feeling most little guys don’t have. You are a study in contrast, a sensitive soul and a typical boy, all rolled into one busy package.

When you were about four, you told me a little story that I will always treasure.  You told me that before you were born, you flew around the world until you found a girl you wanted to be your mum.  Then you told God, “I want that one”.  You told me that She said yes.  I like lots of things about that story.  You tell me now that you love to write, even though it is a difficult dyslexic process to get those great ideas out on paper.  But the struggle doesn’t stop you loving to tell stories.  Keep telling them Little Guy.  You’ve got great stories.

I feel sad that you have never known me as a well person.  Even when you were in my tummy, I was constantly dizzy, tired and sick.  I hope my efforts to mitigate the impact of my illness on you have brought you the best version of me you can have.  I hope it’s good enough. You were a gift child and I am grateful to you, because from the very beginning you made it easier for me, sweet boy. You were such a good baby, a good feeder a good sleeper and an all round sweetheart.  Until… we reached the age of little-boy-grossness and the hilarity of farts, smelly feet, bogeys and a fascination with all things icky!  But I’m sure it will pass…?!

Before you came along, we’d been trying for some time to have you.  But Granny was really sick and everyone was so stressed.  I think you eventually came along at the right time, but I so wish she had seen your sweet face.  My goodness she would have loved you so much, Zed.  She would have wanted to smother you with kisses and special Granny cuddles!  We chose your name because of her.  We are not religious, but she was a woman of faith, and your name means “The Lord has remembered”.  It would have meant a lot to her.  And we wanted your name to stand for something bigger; see, you are a continuation of a long line of people. So many stories and souls worth remembering, sweet heart.  So many people whose lives have contributed to yours, so stay in touch with your extended family.  They are just like that funny saying Aunty Cath sent me on a calendar one year:
“families are like fudge…mostly sweet
with a few nuts”.

I don’t know what your life has in store for you.  But I know that it is significant. There is something special about you, something different and important.  Don’t try to hide your uniqueness little guy.  Be who you are and spread the gift of your charms around, people feel special when you fix your attention on them.  You bring joy and validation to so many people when you see them for who they are.  Remember your gifts and use them.  Someone once said that the meaning of life is to discover your gift, then the purpose of life is to give it away. I don’t know who that was, but they were on to something. You have been bestowed with many gifts and the ability to give much.  If you are ever in doubt about what to do? Do that.

 

mugshotZAC

 

 

The Grief that does not speak…


“Give sorrow words; the grief that does not speak
knits up the o-er wrought heart and bids it break.”

― William Shakespeare, Macbeth

  ————————————————————————————————————————————————–

There is no doubt in my mind that using words is therapeutic.  My blog has given me so much more than I have ever put into it.  I have met people through my blog that real life would never have introduced me to and they are all people I definitely was meant to meet.  Life is better by far for knowing them.  For knowing YOU.  I sit here in my ‘corner office’, tucked up in my bed, typing my heart out onto the internet, and people raise their hands and say “over here, Rach, me too!”.  I am heartened by the connections and community.  I am grateful for a place to explain the things that I find hard to fit into regular conversations.  I have growing optimism about my role in this life, why I am here, what it is I am to do.  Who I am, even.

Thank you so much for reading my words.

Tell me who you are, too? Many of you have stories of your own, words that have been waiting to be expressed.  Many of you have been waiting for the right time to write them.  This is your time. I would like to invite you to share some of your writing, here.  Poetry, stories, reflections, collected thoughts.  All types of writing welcome.  If you would like to share, my place is your place.  Gather your words and publish them in a comment below.

I can’t wait to read yours.

Let’s get our words together, lest the grief that does not speak knits up our o-er wrought hearts and bids them break.

Arohanui X

How are you?

If I met you, I’d smile.  
Maybe you’d ask me how I am.  And my smile might wobble a little.  It’s not a question I can easily answer.  I don’t want to lie, but if I told you the truth of how I am, you might do that little sliding sideways step and make a mental note not to get stuck next to me next time. So I’d say
“…fine, thanks.  How are YOU?” and we would talk about that instead.

But I think it might be time to break out the real answer.
“I’m not doing so well”.  Thanks for asking!

My name is Rachel and I have a neurological disorder that is a dysfunction of the autonomic nervous system.  That means, all the functions of the body that are automatic.  Breathing, Heart-beating, Blood Pressure, Temperature regulation, Digestion, Bladder and Bowel functions.  Just a few of the things that make our bodies efficient places to live.  In my body, all of them are affected.  I have a pacemaker to assist my heart and medications to help with the rest.  They are the ambulance at the bottom of my cliff. But when you look at me, you can’t see how I am falling.  They call my illness an ‘Invisible Illness’.  It isn’t easily apparent. On my worst days, I’m in the emergency department, or here, in my bed.  Dealing with all manner of broken body problems. I might be tapping away on my keyboard. Connecting with the world in the best way I can, out of sight.  But on my good days, when I am visible, I might be beside you, chatting about how you are, and smiling. Looking fine.

There is no cure for Dysautonomia.  My doctors haven’t found a cause, but for some, a cause may be found and a treatment begin.  For the majority of us, ‘treatment’ means symptom management. A regime of medications and interventions; it is a ride on a runaway roller coaster in an abandoned theme park.  Frightening, unpredictable, overwhelming.  Autonomic dysfunction like mine is more commonly seen in late stage Parkinson’s or Multiple Sclerosis, but without a primary cause it is rare. There are few of us in Australia and New Zealand, but we are resourceful!  We have found each other on the internet and we work together to find information, resources and hope. I cannot imagine how it must have been for people with rare diseases before the internet.  It makes me want to cry imagining how very isolated they must have been.  I am so grateful for my finger tapping friends all over the world.  Shouting a two dimensional hello into the ether.  Arms reaching far across the digital divide with comfort and solidarity.

So, How am I?  Really?
So frustrated, so scared.  See, I have two kids and they are still so little.  Zed is six and Bee is nine.  I linger at bed times, holding them in my arms, always for just a bit longer.  My lips against the hair on the tippy top of a warm head, my cheeks pressed up against the moist stamp of little hands. My thoughts, always on what the future may hold for them.  My heart in my mouth and my own hands grasping at the time slipping right through them.  I want to be the mum who walks beside her grown kids, head up high, laughing and joking. Not the incontinent invalid, too spent and struggling to keep pace with the conversation.

I’m heartbroken, so sorry.  See, I have this husband.  He’s the best man I have ever met, and I got to marry him.  He’s tall, and lovely and practical and smart.  When we argue, we make up.  When we struggle, we push through.  When we love, well, there is no song, no poem, no flower that could help you understand.  It’s friendship to the power of two.  It’s trust in the face of despair. It’s warm and good. It took me so long to find him and then, Dysautonomia found me.  How is that fair?  It breaks my heart that he has to live my diagnosis with me.  My husband; my friend.  A commitment in sickness, but where is the health? I want to be the wife he can run away with, when our child-rearing is done. The wife he can play with; he’ll chase and I’ll run.

I’m lost, so empty.  See, I had a great career.  I was a teacher, and I loved it.  I worked with kids who had exceptional ability.  My last job was teaching a small group of gifted child writers. And I still think about every child I have ever taught.  I still yearn for a classroom of my own and a chance to engage in those exchanges when learning is the light illuminating our world. Where sparks fly and inspirations blaze.  Where questions and commentary, connections and community fill me with hope for the future of our world.  I miss being their teacher.  I miss seeing them shine and watching their possibilities unfold.  I want to be the one lighting the bonfire, I have so much tinder for the fire. But now, I just teach myself. Patience.  Every day.  I grit my teeth and get through the next thing, I swallow my shame about what my body won’t do.

But I’m really glad you asked how I am.  Because even though I am all of those things I write about above… I am also amazed, so genuinely gobsmacked by this life. I have lost so many of the things that meant so much to me.  I had very specific plans for my life, for all the things that I thought I should achieve.  But I am finding out something quite extraordinary.
I actually have, SO much.

I have everything that matters.  

I have love.  I have a purpose.  I have words (and I intend to use them!)  Being sick is not a picnic.  But it is a bit of a fast track to finding your true self.  And in spite of everything, I am back to the basics of Rach. For the first time in my forty years of life, I like me. I have so much more insight and empathy than I could ever have had before.  I am writing and connecting.  I am meeting ‘my people’, from right where I am.  In the comfortable discomfort of the present situation.  From my bed.  From a place of real true, me. I feel all these sadnesses, all the fear and loss and frustration.  But I also feel a peculiar kind of free. 
I feel like I have found: me.

I turn and I smile, at you.

Because, actually, I am fine, thanks.
But truly, how are you?

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