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

The Pacifist and the Poppy

It’s ANZAC day, a special date in our calendar down in this part of the world.  If you are in the Northern Hemisphere, you’ll need to know that ANZAC stands for the combined services of Australia and New Zealand in the two World Wars.  Together, we joined with our allies to fight off the threats in Europe, the Middle East, Africa and closer to home.  On this date, we commemorate the fallen ANZAC soldiers.  It’s a day that stops the nation.  People attend dawn services and wear the red poppy on their lapels, sometimes alongside the service medals of generations gone before. The red poppy is the symbol of this day, as it reminds us of the battle of Flanders Field, now covered in red poppies.  A stark visual reminder of the bloodshed and lost souls of war.

Picture of a red poppy standing taller than the poppies in the field beyond. A true 'Flanders Field' full of red poppies to symbolise fallen soldiers.

I have always been horrified by war. The thought of having to go away to fight when you probably don’t want to.  Lucky for me, the only ‘traumatic echo’ I have of war, is the commando comic images burned into my childhood memories: young men being blasted into the beyond. I can’t fully comprehend that real soldiers spent their last days killing people and suffering as they watched their comrades injured or wiped off the face of the earth.  It’s a strange kind of political game I have never, ever understood.  I blame patriarchy and the male mentality for believing war is a solution to state issues. I will never sit with the ‘glory’ of war and I consider it to be a pointless, criminal waste of life.

My brother, when we were growing up, was fascinated by war, what little boys weren’t?  Where we lived in Papua New Guinea, war relics were easy to find.  There was a mount in our town of Lae, that was tunnelled out and used by the Japanese as a base hospital.  As a result, the land around the town was littered with artifacts of war.  Unexploded shells, bullets, and even, in the jungles beyond our town, crashed warplanes. I remember two particular finds.  A Japanese war helmet with a bullet hole in it.  And somehow, more poignantly, an Allies service food bowl with it’s fork rusted right through the rim. When the war ended, rather than surrender, the Japanese blew up the entrances and died inside. And like any antipodean school child, I have heard the stories about Japanese atrocities, I’ve read the books and been horrified by the cruelties inflicted upon Japanese-held prisoners of war.  But there were human souls inside that mountain who died because of war, too.  They died because they were soldier-pawns in a bigger game of war, played out by bigger men making decisions in rooms far from the fighting.

I just don’t get it.

We commemorate the bravery of those in the war effort.  Not all war effort, but WW1 and WW2.  These particular wars seem to have a sanitised, mythical greatness about them in our national psyche.  I do feel it was unthinkably brave to ‘do your duty’ if you were so unfortunate enough to be born in a time of war. And so they were. Brave beyond comprehension.  I can’t imagine the incredible damage done to so many psyches, faced with the gritty duty of firing on other human beings. My mother told me that my grandfather had a drinking problem because he had gone to war. He was away when she was born; a brand new husband and father who returned to his fledgling little family, a vastly different person.  I wonder who he would have been without that war. Who she would have been?

How far does warfare reach into the hearts and minds of the generations beyond?

Yes, we should remember them. But what is that remembrance for if we do not also begin to ask the questions that no one considers patriotic.  Why? Why did it happen?  How can we stop it happening now? And it is!  There are wars happening all over this planet, does it matter less because it is not our family members firing the bullets or taking them?  Does it matter that one of the greatest weapons of war across Africa is sexual assault and female mutilation?

War is not the only way to solve problems.  We are a race of intelligent souls, there are alternatives. There are radically different ways of thinking that could lead to a better future.

I mean no disrespect to our fallen ancestors; the terrible cost exacted by war on family after family. What I mean to say is that I can’t believe that we cannot get our act together and look for peace. Let us not create another reason for another commemoration.  That is the reason why, on this day,

I Remember Them.

I guess that makes me a pacifist.  How about you?  Do you have feelings about this? How is it that commemorations are our solemn duty, but having the conversations about how to stop it all, is not?

Five Little Questions

Part of my Liebster Nomination was the requirement to answer these questions.  At first I was going to be rebellious and artfully avoid answering them.  But Sarah sprung me.  Here they are Sarah!

What is your earliest memory?
It’s a bit embarassing.  I remember the last time my Mum breastfed me.  She was a La Leche Leaguer and I was her fourth.  She breastfed me for the longest, I think I was almost two when I breastfed for the last time.  I remember the brown and white pattern on her duvet.  I remember her saying “Last noong-noongs for you today, my Fat little Foo Foo.”  And profound sadness.  I don’t know if I was picking up on hers or if it was all mine.  Thankfully, time has erased any other details but the pattern of her duvet and the sadness are almost palpable for me now, thinking back.  Last noong-noongs.   Eep!

What is your favourite colour and why?
I love green.  Fields of green. My eyes are green and I have always liked that, because it is a bit different. Green is such a calm colour, soft on the eyes, soothing for the brain.  Love green.

Photographed by Beverley CouperPhotograph by Be Couper

What one word describes you and why?
Intense.  Apparently.  I don’t know why I might be intense enough for it to be the go-to word, but I have always felt things deeply and had a strong sense of justice.  I like to have my voice heard and I don’t like to let things go if I feel strongly about them. 

What is your favourite place to be?
Wherever my family is.  But if we’re talking about a locale, then I would say I love to be in the countryside.  Rolling hills, rivers, animals, fresh air.  And since we’re getting imaginative, a little cottage with a fireplace, bookshelves for walls and a big wing back chair.

If you could have dinner with anyone in the world, who would it be and why?
Cea Person.  I just read her novel, North of Normal.  I loved it very, very much and I thought “I wish I could talk to her about all that; about life”.   She is extraordinary.
But actually, I couldn’t cope with going out for a dinner, not the way things are with me at the moment.  But something tells me Cea is the sort of person who could cope with dinner on our laps in the comfort of a recliner.  If it was something delicious (local), we’d have a dinner in with great conversation and some New Zealand wines.  Reckon we could talk for a loooong time.