Q and A

Last month, I had to deliver a ten minute talk …about me.  My story.  It was part of the block weekend for the Leadership Programme I am doing.  The programme is about leadership in social change and it is challenging my thinking in lots of ways. I really prefer writing to talking (I know some of you will find that hard to believe!) and speech making isn’t really my cuppa tea.    But I started doodling, as you do. I doodled lots of question marks.  And then I made a real cuppa.

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When I returned to my doodles, I stared at those question marks for a long time.  And it occurred to me that the best way to tell my story, was to do it using the defining questions of my life. There have been so many things I have wondered, but I pared them down to the bare minimum.
So! Here is what I came up with.

My Life, in Fourteen Questions:

I am a kiwi girl, born just after my parents completed bible college in Australia. My parents felt moved to work on the mission field in a third world country. So I was raised in Papua New Guinea, then I went to boarding school in Australia and soon after that, they went to China. These were the locations of my upbringing. In total, I attended 13 schools, four tertiary institutions and eventually moved back to New Zealand when I was 23 years old.

There were lots of things about my childhood that made me think.  And one of the first big questions I remember thinking, was:

"What makes us think our religion is more right than theirs?"

I liked to think about things as a kid.  And I started to notice other odd things about our world.  I noticed that when I was at the international school in PNG, there were more than forty nationalities of kids and everyone played together. Where we were from wasn’t even a factor in the forging of friendships.  But when I went home to New Zealand on furlough, people teased me for coming from a place where the women wore grass skirts and showed their boobs.
I was an outsider in my own country.
I began to think,

"Why do people have to be the same to be accepted?"

In my teens I became deeply philosophical, the way some teens do! The questions came thick and fast:

“What is the origin of thought?” “Are we inherently good… or evil?” “Is all this real, or just a figment of my imagination?” “Is life governed by fate, or are we self determined?” “Why are we here?” (and you kids from the seventies and eighties will relate to this one) 
“Are they gonna drop the bomb, or not?”
But these deep questions were all overwhelmed by a far more pressing issue:

“How do you pash?”

(Note to teenage self:  Mum’s historial romance novels were not the place to search for this information.  “She explored his mouth with her tongue” was a stylistic interpretation, not an instruction).

By this time, I’d been given the nickname Falling Tree because I was fainting a lot.
No… not because of boys (but there was plenty of swooning, too… I’m looking at you Morten Harket)!  I made it through my final year of high school and got into a competitive Journalism degree at a Sydney University.  I was ecstatic!

My well meaning Dad thought journalism would corrupt me, so I wasn’t allowed to do that course.  But a year later, when I reframed my University ambitions to encompass a career path ‘better suited for a woman’ I was allowed to go.  I embarked on a degree in Education and Teacher Librarianship.  Instead of writing words, I planned to surround myself with them.
But I wondered,

"Why does being a girl have anything to do with it?"

It took me seven years to get that degree (it was a bit boring).  Across that decade, I moved countries, got married, and divorced, and valiantly embarked on Project: Find a compatible Handsome Prince. There were quite a lot of frogs to kiss, so I used my knowledge of pashing with great determination.  Surely one of those frogs would be him…?!  And all of a sudden three wonderful things happened in a short space of time.  I found my man, we bought our first house and had Bee and Little Zed. All my dreams were coming true.

Then one day I got the flu, and I never recovered. Can you imagine that?  I was constantly dizzy and fainting a lot. But the faints were actually my heart stopping. I was fitted with a pacemaker to keep me ticking.

I asked a lot of questions during those early days of sickness, but the biggest one was

"How Long will this Last?"

No one knew.   Other parts of me starting going wrong: digestion, bladder and bowel function, temperature regulation, cognitive function, I couldn’t sweat properly, my pupils were not reacting properly to light, I had constant nausea and dizziness every time I moved to stand.  My blood pressure and heart rate were all over the place. I began to experience burning, tingling and numbness in my hands and feet, I struggled through daily chores. I had to quit teaching and we had to take in home stay students to cover my loss of income. The fatigue swamped me. My gait and mobility started to change. Every day was an exercise in pushing through. Pacing. Planning ahead.

I ended up in front of a neurologist who explained that I have a progressive form of autonomic nervous system dysfunction called Pan-dys-autonomia.  That covers all the automatic things your body does.  I know some of you here might relate to that. What made my problem odd was that I had it without a primary diagnosis. Dysautonomia is common in late stage MS and Parkinsons, aspects of autonomic dysfunction affect people with spinal cord injury too.  But the cause of mine was elusive. Six years of watching the progression, endless tests, treating the symptoms and fearing the decline and fall of my future led me to this desperate question:

“Can’t something be done?”

That question was met with averted eyes and shaking heads. Do what you can with your family now, I was told. Before you can’t anymore. I didn’t like that scenario. We embarked on a proactive memory-making schedule. A family holiday, the prioritising of togetherness. And I researched. My research led me to other patients overseas.  I listened to their stories, finally finding people who understood. I began to think deeply about the issues that face people like me.  People with ‘invisible’ illnesses, disability and accessibility issues that aren’t immediately evident. People with rare diseases or poorly understood diagnoses. I wanted to know what could be done for them, too. The injustices of all those lives lived beneath the radar began to burn my brain.
It led to this question:

“What can I do?”

I was offered some work writing for an overseas blog. And I remembered that I like to write.  So I started to write for more people, and even for myself. Blogging led me to ask many more questions, but for the first time I was beginning to see that it was leading me to answers too.  About me, about my purpose, and the beautiful, simple idea, that I could do what I do best.
I could write about it!

One day, I found a Youtube video by a specialist overseas who was treating patients like me, and getting results.  My general physician didn’t want to know. So I pushed and I fought and I learned to use my voice with sometimes, quite intimidating doctors! I kept writing for The Invisible and they began to respond. I wrote for me and began to take action. Until finally, I found a specialist who had read the same papers as me, who had seen the same video. He started me on a new treatment regime in January and it is so far looking really promising.
Fingers crossed!

And here I am, feeling better than I have in six years, embarking on the Be.Leadership Programme, and wondering

“Where will this lead?"

I know first hand that while we are all, to some degree,
defined by what our bodies can do and not do;
more powerfully, we are defined by
what we think,
by how we feel,
and by what we can do about that.

I think we have a responsibility to
help people understand
that our common humanity
is bigger than religion,
it is deeper than culture or race,
it is more practical than philosophy,
it’s broader than gender
and more timeless than life spans,
it’s our world’s biggest learning challenge
and it even transcends our physical abilities.

Those questions of mine have taken forty years to percolate. And I am just beginning to understand that they all point to the same thing.
That we, at the heart of things, have more in common than we don’t.

I am so grateful to have found an authentic way to connect my heart for social change, to society.

“How did I get so lucky, to have my heart awakened
to others and their suffering?”

Pema Chodron

Q and A
Q and A
Questions and Answers

and we danced…

Today is a bit special. Even after a night of slumber-party-parent-duty for my daughter and her crew of friends. They’ve all got the day off school today because of her school’s centenary celebrations.  So we thought we’d celebrate the school’s birthday and our girl’s. So slumber partying was in order for last night and a beach ride today! This is the beach.

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And this where I have chosen to sit and do some writing.

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It’s stunning.  Early Autumn here, so not hot, but not cold. A little zephyr of a breeze. A coffee has been drunk, a pastry has been eaten.  The surfers are out in the waves and the girls are all back in the saddle, the place they love best, riding along a beach on our wild West Coast. This country is so breathtaking.  I hope they will hold this beauty in their hearts forever and never stay away for too long.

So many of the younger generation fly to bigger shores when they finish school.  It’s almost a rite of passage here in the antipodes.  Back to the ‘motherland’, or across to the Americas.  Over to where the action is and far, far away from all this natural splendour. I hope that each one of these girls carries a bank of beautiful memories like the ones they are creating today.  Carries them like homing beacons to bring them back to us when they are far away.

I’ve been thinking a lot more about those future days, when they are all grown up. I can see it emerging in my girl; the woman she will become. She and her friends sang with gusto, all the way out to the coast this morning.  Full of exuberance, they sang of a kind of love they are yet to experience. And I looked at their beautiful, shiny faces in the rear vision mirror.  Beautiful creatures. They don’t know yet, but they will.  Not so far from now.

We turned the music up, and together in the cocoon of our big warm car, we danced in our seats, be-boppin babies.  The old girl, the young girls. Full of happy hopes and wonderings. Full of a love of our own.  Love for life, for our beautiful country, for horses and sea air and the waves on the ocean.

It made me think of this song, from back when I was a young thing myself. My brother gave me a copy of The Hooters on cassette. Remember All You Zombies? That was them, too. I really loved that tape.

This the them.  And We Danced.

And we danced like the waves on the ocean romanced
We were liars in love and we danced
Swept away for a moment by chance
And we danced and danced and danced…

(ha!  love the eighties, not the mullets!)

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a Good Girl…

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The kids have been writing their wish-lists. I love the funny things they still think are realistic. I love that they still dream pie-in-the-sky christmas dreams.  That they pretend to not believe in Santa but still harbour hopes they won’t admit to. I have been ever more grateful for the way online shopping helps people like me make Christmas dreams come true.  How did people with health challenges manage before the internet?  I just can’t imagine.  I am mindful that gifts aren’t everything; there are other ways to show love, but oh my goodness I adore Christmas gift giving.  I love choosing things and the thinking about how tickled each recipient will be over each gift.  But the crazy commercial nature of it all has me thinking about the non-material things I wish for this Christmas.

Do you have a grown up Christmas List?  Maybe mine is a bit pie-in-the-sky, but if there was ever a time for dreaming big, it’s Christmas time…

For my family, I wish time spent in contented company with one another. Making memories and enjoying the benefits of our antipodean summer Christmases.  Beaches and picnics and bare feet on grass.  I wish ice creams and kite flying and movie nights with fish and chips.  I wish them rest and recuperation from their busy year and time to get excited about the new one. I wish for them, the ability to see how lucky we are.

For my friends, I wish good self esteem and inner peace.  I wish recognition for their efforts in whatever field they’ve been endeavouring this year.  I wish them health and body vitality and the ability to look out beyond their daily grind to the beauty all around us. I wish them calm and joy and love.

For my community I wish greater connections, stronger ties between the people we pass on the street.  I wish the safety net of good medical care and provision for timely mental health services. I wish clean streets and strong infrastructure.  Clear water and fresh vegetables. Room to grow and mountains to climb. The ability to see the beauty in each person they connect with and especially, their own significance as part of the whole.

For my country I wish for a burgeoning sense of value in what we have, right here in this beautiful little nation.  I wish wisdom for the government and gratitude from the people.  I wish for strong safety nets to catch the needy and better programmes to build self-determination and strength among the marginalised.  I wish for compassion among the people for one another, personal accountability.  And kindness.  More kindness in this country.

For the world… sigh.  I wish someone would call a stop to the madness.  We are all people.  People should care for each other, not kill each other.  Our similarities are far more significant than our differences. I wish we could look in the mirror and see our neighbours instead of ourselves.  I wish we could gaze at our children and see the faces of our enemies children. I wish we could stop the violence because it makes no sense.  The problem is so big because no one seems to think the answer lies within themselves. If you can change your heart to include the people you feel like you should hate, if everybody could do that.  It would be done.  I wish we could all live and let live.

Is that too much to ask for, Santa?
I think I have been a good girl…