Build me up, Buttercup.

Every year I imagine I can be prepared enough to slow down the Term 4 Tornado.
But I never can.  The calendar and the inbox cram themselves with things I can’t do justice to; my daughter’s graduation banquet, my son’s camp, athletics day, events. I start to get that panicky accelaration feeling you get when the roller coaster takes off.
I’m rattling down the track and the wheels start to wobble. I grasp around for an emergency brake, but this roller coaster doesn’t have one. I look ahead to 2016 and brace myself. I just need to make it to that shiny horizon. That beautiful, new, unsullied year. Then I can wrestle some peace out of the pace. I just need to make it there…

Things have been a bit crazy.

I was supposed to be graduating from my programme on Friday, but I am not. Some people can get over things quickly and move on.  I’m not one of those people. It takes time for me to feel alright again after I’ve been kicked. So I am staying away and I am sad that I won’t be with my cohort for their very special night. I’m sad all of the year’s work and thinking won’t be recognised for me. I am told this is my choice, but circumstances made it very difficult for me to make a different one.

And there has been the situation with the grandies, all the to and fro’ing. And an awful phone conversation this week where I was told all the meals I made and the efforts I made to help were not wanted. It felt like a sucker punch to the guts.  I guess I have been feeling sensitive anyway after the flak I copped for my blog. To cop flak for trying to be a good daughter in law was just too much, I held it in until he had hung up the phone.  Then the floodgates opened.

I went for a walk to the park at the end of our little street. I couldn’t stop crying; even big girls cry sometimes.  I stared up into the branches of a massive oak tree and tried to rationalise all of it, I looked around the park. Tried to find a clear headspace where I could step away from the noise and mess in my mind. And then I saw this. A small patch of weed infested grass. The sun, dappling across the tops of the grass. Tiny yellow buttercups holding up their little faces to the warmth.  Uncomplicated. Just, there. Just being them.

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I decided I need to do a bit more of that. Just letting the sun soak into my face. Just sitting in a field. Just looking at the flowers. Just being me.

I’m taking myself away with Flo this weekend. Away from the sad feelings I have about missing graduation. We’re going to have long breakfasty-lunches and stroll slowly along Oriental Parade. We’re going to chat and laugh and enjoy the easy company of each other and the joy of no responsiblities. It’s going to be a tonic.

What does your weekend hold?  I hope you get the chance to be like the buttercup. Even for a little bit. The new year is just around the corner …I am fairly confident in my prediction that there will be sunshine. 🙂

 

 

 

Copping Flak

Today I want to tell the story about when I copped flak for telling it like it is. For telling the truth of life with invisible illness. Sometimes that truth is painful and upsetting. Sometimes it is traumatic. I tell my stories because there are others who cannot tell theirs. I speak up. And sometimes I get knocked down for it.

use our voices

It has been a wrench for me, to spend less time on my blog this year. I’ve been doing a course run for people in the disability sector. It has kept me really busy, and my improving health has increased my ability to be out and about. But I have missed you. This blog is very very important to me.  I was going to say it was a piece of my heart, but the truth is that this blog IS my heart.  My heart for my family, my heart for people suffering with invisible or chronic illness, my heart for our world, my heart for myself. It’s my heart, spilled onto the page, shared with people so that people like me can feel less alone and so that I can, too. Shared because I know how important it is to share the realities of life with invisible illness. I know that, because you beautiful people have told me that.  People who are not sick themselves, and people who are.  People who care. You are an extraordinary bunch and I am glad you came to my corner of the internet.

Publishing out here on the world wide web is a broad platform. Anyone can read your words.  Everyone who does, will read them through their own lens and make of them what they will. Being misunderstood about my heart is a painful thing. But it is a part of blogging.  In that sense, it is no different to being out in society.  People react to you in varied ways.  Not everybody likes you. And just in the same way that invisible illness is overlooked and misunderstood by society at large, sharing my stories here doesn’t guarantee that my heart will be understood.

Last Sunday I awoke to an awful thing.  Someone I respected and had a connection with through my course, had posted about the types of stories disabled people should not tell. In itself, that is just his opinion. He’s entitled to it. But one of my posts was linked as an example of what not to do.  It’s a small thing in the grand scheme of things. But it was a very big thing for me, to have my heart skewered in the public forum that way, in a sector of society I am part of and care passionately about.

People who are disabled due to illness make up the largest portion of the disability community here in New Zealand.  Our stories of disability due to illness are valid expressions of our lived experience.  They are our own. We tell them in our own words and from our own hearts. It is traumatic to acquire disability.  That person called for people with invisible disabilities to harden up. The words ‘portraying ourselves publicly as traumatically wounded’ linked to a post I wrote about dealing with the question
‘how are you’.

Every person in the disability sector has their own unique way of ‘being’. That’s just part of humanity, we express ourselves with infinite variety because we are diverse, because self-expression is the stuff of art, of poetry, of what makes us people. Competing over who has the most valid disability voice is counterproductive to shaping a society where all people are valued equally.  Suggesting as they did, that our unique voices should only be used to tell ‘way to go’ stories, is ridiculous and dangerous. It is the opposite of raising awareness and a worrying call for self-censorship which does not serve the invisible population. We speak out because our voices can be heard when our disability can not be seen.

I was gutted about receiving this flak because it came from within my sub-group of society. I see now that people with disabilities acquired through illness are not necessarily considered part of that group by people who fit a more traditional definition of ‘disabled’.  But we are part of that group. How much stronger could our presence in society be felt if we worked with each other, rather than against?  It seems to me, that the disability sector has a lot of distance to traverse within it’s own community, if we are to ever hope for true understanding outside of it.  How can we expect understanding and acceptance from others, if we don’t practise it ourselves?  Why all the political bullshit?  Must we?  Why can’t we just be kind and move forward?

I thought about putting on a flak jacket and advancing into the fight. I don’t like injustice. I don’t like bullying. I don’t like influential people being mean and thinking that is all just part of a provocative debate. But I can’t build a kinder world by being mean myself.

Instead, I have written to that person and to the people in my course.  I have withdrawn from the programme because I can’t continue there with any joy. I don’t need that course to make a difference. I don’t need to graduate to know that I have something to offer.  I am me, that is enough. So I returned here to my blog.  I don’t write for the people who don’t see my heart in my words. I write for you. I write for me.  I write to shine a light on the things not seen.  I see you, out there. I hear you. And I hope if you are writing your stories too, that you won’t let a flak attack stop you from sharing the things that matter.  And if you are reading the stories of people beneath the radar, keep showing them your support.  We are always stronger, together.

From my heart to yours. x

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.

www.rachelfaithcox.com(11)

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

Dwelling in Uncertainty

I’ve been reading Margaret Wheatley’s book, ‘Perseverance’.

This book is a call to action; a calm reassurance, the wisdom of elders, food for the soul.  I urge you to read it, too. Particularly if you are a person with chronic illness. In her trademark gracious manner, Margaret Wheatley tackles the notion of perseverance. She asks “How is it that some people persevere..?”

Much better to dwell in uncertainty,

So much of her work strikes at the heart of me. So it was difficult for me to pick one excerpt to share with you.  But I eventually chose this one; I hope that this one will resonate with you, too.

“Some people despair about the darkening direction of the world today. Others are excited by the possibilities for creativity and new ways of living they see emerging out of the darkness.

Rather than thinking one perspective is preferable to the other, let’s notice that both are somewhat dangerous.  Either position, optimism or pessimism, keeps us from fully engaging with the complexity of this time.  If we see only troubles, or only opportunities, in both cases we are blinded by our need for certainty, our need to know what’s going on, to figure out so we can be useful.

Certainty is a very effective way of defending ourselves from the irresolvable nature of life.  If we’re certain, we don’t have to immerse ourselves in the strange puzzling paradoxes that always characterise a time of upheaval:

  • The potential for new beginnings born from the loss of treasured pasts
  • The grief of dreams dying with the exhilaration of what now might be,
  • The impotence and rage of failed ideals and the power of new aspirations,
  • The horrors inflicted on so many innocents that call us to greater compassion.

The challenge is to refuse to categorise ourselves.  We don’t have to take sides or define ourselves as either optimists or pessimists.  Much better to dwell in uncertainty, hold the paradoxes, live in the complexities and contradictions without needing them to resolve.

This is what uncertainty feels like and it’s a very healthy place to dwell”
-Margaret Wheatley, Perseverance pp.15

My poor little brain has been doing some stretching exercises since I started the Be.Leadership Programme. I feel like I am finally feeding my mind something really nourishing, and it is growing.  But like any travels into new domains, it is a time of uncertainty.  The ground I thought was solid, the terrain I knew… it is shifting into topography I’ve never traversed before. For instance, I am no longer sure that I know myself. But I feel more authentically ‘me’ than I have ever felt before.  They are two contradictory ideas that currently co-exist for me. It’s strange, this place.

And yet, some of this is familiar to me. There have been pre-emptive echoes in my writing.  Ideas about suffering and insight.  About anger and acceptance.  About finding an entirely new purpose and direction for my life. These ideas reverberate across my synapses.  Something is ‘becoming’ in my brain, I just don’t have the broad sweep, the bird’s eye view, to map it yet.  My mind-sight is gathering information and piecing it all together. And my soul watches as the slow picture shifts into focus.  I am dwelling in the uncertainty and letting it be what it is.

Something,

almost,

not quite,

nearly…

For a girl who prefers absolutes and is quick to assess things in definitive bytes, it’s an odd place to dwell.

How are you at ‘dwelling in uncertainty’?
Do you prefer to know exactly what you know, or are you happy to step out into not knowing?
Do you agree with Margaret Wheatley, that it is “Much better to dwell in uncertainty, hold the paradoxes, live in the complexities and contradictions without needing them to resolve”?

 

 

Get Me Out of Here!

Notes from Sunday 29 March:

I’ve been away from the internet since 7am this morning; the last time I scrolled through my notifications, checked over the control panel of my blog. I’ve been in class, learning in real time. My hands haven’t touched my keyboard. I’ve been making notes in my notebook, like, with a PEN. It feels, frankly, weird.

Being in a learning environment with all those other souls feels different, too. In a strange but familiar way.  I’m in the first retreat block of the Leadership Programme I am part of. It’s day one, two more to go. I quickly get a bit peopled out, but I console myself with the idea that soon, I’ll have some one on one time with my laptop.
Being off the internet feels weird.

So when I get to my room, (Yes!  Sudima Hotel has free wifi!), I instantly seek out my old friend. There’s a sigh of contentment as I lift my laptop over onto my lap.  Hello sweetheart.  Let’s go exploring…

Except a pop-up window keeps telling me that my usual pages are all, ‘untrusted connections’. It won’t let me validate the security certificates.  Just one option is available on my screen. ‘Get Me Out Of Here’.

Screen Shot 2015-03-30 at 7.36.01 am

But I don’t want to get out of here! I’ve been getting twitchy withdrawal feelings from my internet; my friend.  I miss it. I miss what it shows me, where it takes me, who it connects me with. I keep trying, like a drug seeker after that familiar hit. I’m no quitter.

Then my roomie starts conversing with me. And the conversation captures me!  Before I know it, my laptop is sliding sideways onto the bed. I’m listening. We’re talking, laughing, covering the deep stuff.  Travelling the world and traversing through time.  Connecting like old friends.  That feels nicely weird, too; we are talking about things it would usually take established friends some time to reach!   I close the lid and turn to laugh at something she just said.  We giggle and adjust our volume so we don’t wake up the people in the neighbouring room.

Connecting with real people in real time is exhausting for me. I like respite.  Alone time. It helps me to recharge when I have some solitary time.  So I am surprised that I have spent an entire day, deeply immersed in the learning.  Engaging with all the individual souls in my programme.  Talking, listening, talking, talking… and then come to my room and talk some more. We talk until midnight gives us pause.  My brain is whirring somewhere high above my sleepy self.

A little thought skips through my mind as I close my eyes. How interesting that my ‘untrusted connection’ warning on the internet has left me open to a real and trusting connection in real life.  Kismet. Coincidence.  Connection in a dis-connected, digitally connected world.  I like it when life gives me gifts like that conversation.  To be present is the present.

Goodnight.
And internet? I’ll see you when I get out of here, my old friend. Til then I’ll be immersed in some other kinds of connection …and you won’t miss me at all!

To Be.

tobeornottobe

Toward the end of last year, just as my sorry self was beginning to think I was running out of anything important enough to offer the world, I received an email that heralded a big change.  It was from Kylie at the Be.Accessible organisation.  I’ve written about them before, here.  They do excellent work in New Zealand: working onsite to improve accessibility across the country, increasing employment prospects for graduates with accessibility issues, championing the thinking about accessibility and community with the big thinkers of the private sector and developing leaders for social change.

I had written a piece about my birthday shopping expedition.  It was an accessibility nightmare.  You might have seen that piece, it was called Gone Girl.  Well, Kylie read it and emailed me, inviting me to a meeting to discuss ‘synergies’.  I thought that maybe she wanted to talk to me about my writing, so I went prepared.  I took a copy of my stats from the blog and had prepared to answer questions of the commercial kind.  But Kylie and her colleague Iris, wanted to know about my philosophy.  My core beliefs.  My illness journey and why I write; they asked if I knew what my audience was and for the first time I had an objective measure of what those stats meant.  It was a turning point for me. Kylie asked if I had thought much about the future of my blog and the directions my writing might take. And she outlined the Be.Leadership program.  They invited me to apply.

I came home fizzing. My whole body was shaking with the effort of the meeting, the nervousness I had felt and then the excitement as a whole new possibility opened up for me.  It’s one of the things I have learned to love about having a life that has swerved so far from my original plans. It keeps surprising me!  I applied, and then, on Christmas Eve I received the message I had been hoping for.  I had been accepted into the program.  Every year, 20 people from the disability community are selected to undertake a year of inquiry, reflection and growth in the field of social leadership. We’ll be engaging with leaders from a range of industries and sectors.  We’ll be workshopping, discussing, thinking and growing as leaders ourselves.

One of the things I thought had passed me by when I got ill, was the opportunity to do further study.  I just didn’t know how I would manage to physically do all the things required to even begin.  How I would be able to manage a fixed schedule with an unpredictable illness?   But life seems to be smiling my way.  I will be studying, after all.  I’ll be studying with an organisation who are committed to accessibility, they are perfectly positioned to understand diversity. So it will be possible for me to make the accommodations I need, to do what I need to do. And I will be studying something I am passionate about:  how to help make our society one “where everyone can just BE.” (Minnie Baragwanath).  I’ll be representing the unique perspective of people suffering with invisible illness and disabilities.  I’ll be writing.  And if I continue to feel as I do now on pulse steroid therapy, I’ll be able to do it with so much more energy.

After years of pushing against a tide of impossibility, my own sea of troubles, there’s a ship on my horizon. Once upon a time Shakespeare penned the timeless question; “To be or not to be?”.   I smile, as I write the following words: ‘to Be.’ is my answer.  To be all that I can be.  The programme starts in March, I am gathering together my reading list and filling my head with all manner of anticipations! But before I get all carried away with it, I want to say thank you; because in all truth, this pathway has opened up for me because of this blog… and that wouldn’t exist without my readers. That’s YOU!  I have found that writing about the things that matter gives me purpose, knowing you care about these things too gives me hope.  Thank you for giving my words the chance to enter your space. Thank you for reading and encouraging and helping me through all of the difficulties.  Thank you for sharing with me a passion for growing a compassionate, understanding community for people with invisible illness and disability. Now, it’s time for us to celebrate something great.  The start of an exciting new learning journey.  I can’t wait to share it with you!

I’m off to Be.Leadership!

teddyrooseveltP.S The above quote was mentioned by Bear Grylls in his show, The Island, on the telly last night.  He was talking about great leadership.  It stuck with me because I think it is a vital part of leadership. How important it is to show people you care before you can hope to lead them.  It is my desire to be that kind of leader. I’ll be thinking about that while I prepare for my first ‘Be.Leadership’ task.  Watch this space!

To be or not to be?