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:
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,
In my teens I became deeply philosophical, the way some teens do! The questions came thick and fast:
(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,
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
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:
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:
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.
And here I am, feeling better than I have in six years, embarking on the Be.Leadership Programme, and wondering
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?”
Q and A
Q and A
Questions and Answers