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.


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

How Long ’til my Soul Gets it Right?

So many philosophies abound on the subject of life, past lives, karma, goodwill, fate, futures, memory, purpose.  The meaning, of all of this.  We go through our days searching for reasons, looking for clues that will help us understand the Great Mystery.  Well, I do.  Hubster is less curious about why we are here and what it all means.  I sometimes envy his solid and scientific approach to all things metaphysical.  He is able to just not think about them.  What a relief that must be!

I grew up in the midst of church, quite literally.  Some of my earliest memories are falling asleep in my sleeping bag under the seats in the church, listening to the preacher’s voice at the Sunday night service.  There is a kind of a musical rhythm to preaching when you don’t understand the words.  That old tradition; generations of oratory, was my first lullaby.   My parents went to pentecostal churches (those are the ones you might identify as the ‘Happy Clappy’ churches).  And so, we four went too.  We had devotional every morning, home-church mid week and then church twice on Sundays. The singing was robust and energetic.  People raised their arms and waved them in the air.  I used to wonder why God didn’t wave back. Why some people could hear his voice but not others.  I used to pray with great earnestness.  I wanted to know the God they said was loving and kind.

When I was born I was dedicated to God.  I was four I was guided in the sinner’s prayer and ‘gave my heart to the Lord’. I didn’t want to go to hell when there was another option! The Bible said all manner of horrific things. Vengeance and punishment and judgement and eternal suffering. The Bible said that if I so much as thought of a sin, I had sinned. I was terrified.  I quite often thought of sins. I especially thought sinful thoughts about church and God and Christians. They just happened in my head. People sang songs of love to Him and danced in the aisles for their joy.  But I trembled at the thought of that angry God. I played my part and talked the talk, until one day, I couldn’t sustain the double life that I had grown into.  The church me and the real me.  The two ‘me’s were now so far apart that I couldn’t behave like a ‘christian’ and feel like myself.  It was a difficult conversation to have with my parents.

My parents’ people were faith-in-action people.  They believed in doing.  They were generous and truly understood the power of giving, of themselves, their skills and their own possessions.  Their communities were strong and compassionate.  In every church they attended there were people walking the talk, being God’s grace in the world.  And just as in any group of people, there were strange folk. People I found it hard to like. And I sang the songs and I clapped along.  People swooned at the pulpit, cried with joy at their healing, spoke in strange languages at their baptisms, screamed as they were delivered of their demon possessions… and some spoke with the voice of God Himself during prophecy time. God Himself spoke in King Jame’s English, just like my bible. Not Hebrew.  Or the language of heaven, whatever that be.  How curious, I thought.  And I would chide myself for another sinful thought.  My heart longed for the kind of connection with God that so many people seemed to have.  But it was always so elusive, just beyond my grasp.  I think I knew that the God of my parents did not love me in the way He loved some of those people, and I couldn’t find real love for Him amongst the noise of all my thoughts.

As I grew older and began to read more widely, experience life more, explore the ideas of modern religions and world history, my questions came thick and fast.  My doubts grew.  I saw the manipulations of communities by corrupt church leaders, by TV evangelists, by healers and preachers and worship entertainers. I stopped feeling guilty about all the ways I had failed in the church. I began to let myself wonder and think even more.  I wondered about other religions and began to research.  Why? I don’t know exactly why I search for answers, why I want to believe in something.  Because it is nicer to believe.  Because life is easier if you believe in something. But every religion I looked at was not my religion.  Did not answer the call of my heart for connection and meaning.   There are aspects of religion that I truly love.  I love the quiet reflection that can only be found inside some chapels.  The hush and rest of a seat in a candlelit space.  I love the music of faith, the melodies of my childhood, the songs of scriptures in a chorus of voices.  I love a good Psalm when I feel adrift.  A verse from my early years can bring me the comfort of my mother.   The memory of her voice saying my goodnight prayer, the same every night until I left home.

In a simple way, I feel certain there is something.  I have felt a rush of feeling when wonderful things happen in my life.  It is gratitude, deep thankfulness from my very soul.  It wells up and sometimes I have to shout it out.  Thank you!  But who am I thanking?  I am not sure.  I feel gratitude to the greatness of life.  I once watched a film that was about life in a meadow in France; Microcosmos I think it was called. It was filmed on microscopic cameras and showed extraordinary, exquisite details of insect life.  The detail, harmony, the ecosystem played out in all its’ artistry.  It completely blew my mind.  So profound. Somewhere in there is the meaning of life.  The secrets and the mystery of it all.  Somewhere out there, or in here, surely, is a life force worth worshipping.  So I feel gratitude to something I can’t define. I wonder at the sheer intricacy of our planet.  Our Universe.  Our bodies and our minds.  Our capacity to love and to hurt and to create and to destroy.  But I have not found a religious God.

My soul has been trying to get it right.  I try hard to show kindness where ever I can.  This is part of the religion of my heart.  I try to see all people for who they are without the damage that has been inflicted upon them.  I try to bring thoughtfulness and calm.  I try to connect and cherish.  I try to make the step toward a person rather than take a step back.  I try to add value to the world through the children I have brought into it, by helping them build character and strong values. I try to practise compassion and most of the time, I succeed. I believe in choices and consequences and the importance of making sound decisions.  I believe that we are all important, regardless of creed or religion.  And in my ‘religion’, I think having a good laugh at myself and at anything ridiculous is good for the soul.

How long til my soul gets it right?  Can any human being ever reach that kind of light?

This line is one in a song that always makes me smile.  It is a tongue in cheek song about reincarnation by the Indigo Girls.  I found this song when I was 19 and working in Germany as an au pair. Their music was great to dwell on at that age, such good lyrics. I still love so many of their tracks.  They take me back.   Have a listen to Galileo.  It’s worth paying attention to the lyrics, they make me laugh out loud.  And in the absence of something more transcendent, laughter is a good good thing.


er… and just like many of the Indigo Girls videos, this one is a bit distracting.  Better to listen than watch.  Or listen.  Then watch!