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

Erika-Louise: New Normal

Dysautonomia has affected every single

I can’t remember the first time I ‘met’ Erika-Louise online. I just feel like I have always known her. We have chatted a lot over the time we’ve known each other and I am an avid reader of her blog.  Erika suffers from what is, according to experts in the field, the worst case of Auto-immune Autonomic Ganglionopathy in the Southern Hemisphere.  She has been studying medicine and describes her illness in a characteristically matter of fact way.  She’s not given to feeling sorry for herself, but I don’t think anyone would ever judge her if she did.  Her life is tougher than most. This post (with her sanction) is a bit of a mash-up of some of her blog writing so she can tell her story. She’s currently back in hospital and working on a gruelling rehab program and unable to write a bespoke post. She aims to regain the functioning she had worked so hard to achieve before another infection undid all her previous gains. I am always impressed with Erika’s true grit. She’s someone I admire and I am delighted to have her words here on my blog.  So, here she is, she’s one of my ‘Invisible Illness’ sisters-in-arms, a fellow blogger,and a thoroughly fantastic person.
Welcome to this edition of the Meet my Peeps Guest Series:

Meet My Peeps“I’ve been on the roller-coaster that is chronic illness for about four years now and it feels like a lifetime. My name is Erika and I am a 26 yr old girl from Australia with very severe Dysautonomia in the form of POTS (Postural a Orthostatic Tachycardia Syndrome) and AAG (Autoimmune Autonomic Ganglionopathy). These conditions have affected almost every system of my body negatively. Both conditions can be extremely debilitating and in my case they have been quite significant. Almost every autonomic function of my body has been impaired and I rely on a huge array of medications and intervention therapies to get by day by day.

It’s a life that I would never have imagined for myself.

I have spent a grand total of 6 months at home since 2010 whilst the rest of the time I’ve essentially been ‘living’ in the hospital as an inpatient. It’s sad to say it, but true; it feels like my second home.

I was admitted in early 2010 when my body decided to demonstrate the beginning of many autonomic problems. My first discharge was not until August 2013. I spent about 6months at home & returned to hospital in February with another nasty infection. And here I remain…

Dysautonomia has affected every single aspect of my life. It has also taught me so many things about; myself, my amazing family, who my true friends are and some unexpected saddening realities.
I’ve decided to write a blog as I want to share my journey, my trials and tribulations and my story. I have made a conscious effort to not become my illness, rather it be only a part of me. I don’t often go into any detail of my life and thought that this might be an avenue to vent, chat, express & be inspired by others in similar positions.

“As of right now, I cannot sit up unsupported, stand, walk & raise my arms without losing consciousness, every single time”.

Everyday life brings unthinkable challenges for me and so many others living with chronic illness. Having an invisible illness like Dysautonomia can be very challenging as people cannot always see the health problems and so find it hard to understand, empathise and relate to the new ‘me’.

My dream in life is to complete my university medical studies & live an independent life doing basic things like walking, standing for periods, doing my hair & other basic bodily functions that I will not go into.
I just want my life back.

Before Dysautonomia I was so….normal. I was your typical girl with everyday problems who loved to socialise and soak up life’s best offerings (including cocktails). I had completed my studies as an Occupational Therapist and commenced studying a degree in Medicine to eventually become a doctor. I had the strong desire to study medicine after going on my practical experience as an OT in both a hand therapy unit and especially a neurological rehabilitation ward. I wanted to know every detail of the persons medical history and how and why everything happened. It’s quite ironic now that I am lying here on a neurological ward where my ambition for further study started. I have had to withdraw from the course in spite of completing some of the papers from bed. It is heartbreaking.  You can read about that here.  I guess for now I’m still hanging onto the hope that sometime in the future I will get well enough to be physically and mentally capable of achieving my dream.

My beautiful family are my rock. They’ve all endured so much as a result of my illness. I am certain I could not get through this without each of them. All five of them are part of my team and help me everyday to keep hope and belief that things will get better. My mum is an inspiration. She has managed to be at my hospital bed almost every single day without fail. She works full time as the leader in a high pressure job and is always on the go. I actually don’t know how she does it all. My dad, another amazing man. He’s beyond caring & is always worrying about me. Between his full time work shifts and mums work he visits me any day he can, even when tired after night shifts etc. They both live at home with 2 of my siblings whilst my other sister lives away.

For now I take each day as it comes. I embrace the positives as much as I can and try to push through the negatives and make them work for me. Recovery and healing is hard work on so many levels and I will continue to persevere in hope for the next good day to come”

-Erika Louise

(Rach says: I’m sure Erika-Louise would love you to come and visit her on her blog.  As a fellow blogger I can say that there is no bloggy encouragement quite as fabulous as a comment when you are feeling discouraged 🙂 )

 

Warning: This post may not be your cup of tea.

 

 

https://www.facebook.com/VintageHeavenAtNo7
SOURCE: https://www.facebook.com/VintageHeavenAtNo7 (used with permission)

This post uses accurate words to describe body parts.  If you don’t wish to read about the private parts of a woman’s body, please look away, click on over to somewhere else. I fully understand.  Not everyone feels like it is a topic for discussing in a public forum. I do, because I care about women, about the alarming increase in real-body-loathing. And I am a mum of a girl, so I care about what is happening to our perception of women in all facets of the media.

I’m writing about bodies. Girl bodies. Women bodies. They are strange things.  There are wobbly bits and wrinkly bits and saggy baggy hairy bits. We all have little oddities about our bodies that make us uncomfortable.  Aspects we wish we could improve, or align with our idea of ‘normal’.  The idea of what is ‘normal’ starts when we are very small.  Maybe our Mum’s are a bit paranoid about some aspect of their appearance.  They survey themselves in the mirror.
Just as you exclaim, breathily “you’re so beautiful…!” she says
“I look AWFUL!  Look at my big bum/ tummy/ long neck/ stumpy legs”.  She is frowning at what she sees in the mirror. And you realise then that any, all of those things must be bad, not normal, sub-optimal.

You get to school and there are ‘right’ ways to do your hair, scrunch your socks and even ways to walk and stand.  You know that these are the ways to look because that’s how the coolest girl looks. Everyone likes her so much, so you try to look like her.  Then one day someone passes you that teen girl magazine.  The faces are all so beautiful.  Their skin is so dewy and pore free.  There are no pimples. Their clothes look brand new, there is no dust on their shoes. Their teeth are white and their eyelashes inhumanly long. Like their legs and arms.  They don’t grow any body hair. You sigh with a feeling of admiration and despair. Somehow, the bar has been raised even higher and you don’t know if you can reach that kind of perfection. But you know you want to.

Then you are at University. It’s a time of discovery. Relationships.  You discover all the ways your body works to deliver an adult kind of fun.  There is an awkwardness to your first naked encounter. Your partner is kind and lovely, but clueless. He surveys your nudity and notices the things that make you different. By now, being different is something that you know is bad.  Like big bums, hormonal skin, body hair, and cellulite. But he’s talking about a part of you that can’t be changed by diet, or makeup, or waxing or careful clothing choice. Your most private parts are different.  You sink far into yourself, deeply ashamed. You are different.

You visit some friends in their flat.  They’re so cool. She’s so happy with herself, so confident, that she is even fine with her boyfriend having a stash of porn on the coffee table.  You wish you felt that confident. You pick up one of the mags. The title is the plural of the ‘c’ word. It’s like a catalog of close-up vaginas. You are shocked, but incredibly curious, because you know you are different down there.  You’ve been told that. And here are hundreds of vaginas to look at, you flick open the cover…

What is normal?

Most women don’t know. We don’t sit around and compare our privates. If you are part of my generation you probably never saw your Mum naked.  The diagrams on tampon boxes aren’t even helpful, a few discreet lines to indicate the (ahem) possibility of labia. The only graphic images we see, if at all, will be courtesy of porn.  Deliberately or inadvertently, the vaginas we, and our partners, will compare our private parts to have been aesthetically modified for the porn market. That horrifies me. Some vaginas do look like that, but they are not the only way a vagina is.

For a start.  They are bald.  I have had the privilege of seeing some vintage seventies porn. Those vaginas are not bald, or even trimmed. The males are not viagara’d, but that is another issue.  It seems that we have come a long way in our media portrayal of sex itself. Modern day vagina images are also photoshopped, trimmed, ‘tidied’ and tucked away.  The labia are absent, the clitoris has been allowed to remain. But how far away are we from the thinking that drives genital mutilation in other cultures? And women everywhere are driven to emulate these unrealistic vaginas. Labia removal; ‘designer vagina’ surgery is on the increase. Self mutilation. Is this because we ourselves want bald beavers; baby bits?  Are we not alarmed at all, that soft-porn vagina images look like little girls vaginas? Aren’t we allowing the media to teach men that ‘little girl vaginas’ are sexy? Aren’t your internal sirens blaring? Are we not connecting it in any way to pedophilia, easier not to think about that, right? We must think that the child vagina aesthetic is reasonable. Because many of us do go under the knife. Surgery is incredibly painful. Depilation is also painful, let’s not diminish that! A torturous maintenance chore. Would men commit so many dollars, forbearance and hours to taming their tackle? Would they surgically change their scrotums? I doubt it. We might think we want to be ‘normal’, but what constitutes normal needs to be based on reality, surely. Who is going to stand up in defence of the real vagina if not us?  Women.

For most of my adult life I have suffered under the burden of my imperfections.  If I hadn’t got sick, I’d probably still be worrying and wondering about how I could change the way my body is.  I’m not the only woman who has been obsessed with this issue. ‘If I could only fix this…’ sound familiar?

Getting sick has given me a different perspective.  Given, literally, because it is a gift to see it differently. A relief to put the ‘expectation’ of society into an accurate context. Whatever ‘normal’ is for society, it is no longer ‘normal’ for the human body. We have to stop the stupidity.  Cosmetic surgery for non medical reasons is dangerous and un-necessary. The ‘bits’ we need to fix are in our minds. If our bodies work we are fortunate beyond measure.  If we are healthy we are gifted with opportunities to use our bodies with joy.  We should celebrate every fabulous wobbly and weird bit of them.  Bodies are beautiful. Just the way they are.

I want a future for my daughter where her beautiful body is a comfort and a joy to her, just as it is. In all it’s human reality. Where she can stand naked in front of a mirror and breathily say
 “you’re so beautiful” to her own reflection.  Because she is.

The following documentary excerpt was sent to me by a friend. It is why I wrote this piece.  It is GRAPHIC, so if you are squeamish or uncomfortable about surgery, genitalia or discussing vaginas, please don’t press play. If, like me, you are concerned about the state of thinking in women that leads to body loathing, please watch.  I’d love to know your thoughts on the issue.

 

LABIAPLASTY: Hungry Beast, ABC1 from Ali Russell on Vimeo.

North of Normal

Book Review

Last time I was in my favourite bookshop, this book insisted on coming home with me.  The title intrigued me but the subtitle even more so.
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I didn’t have a wilderness childhood, but I could see that Cea and I already had a few things in common.  It looked like a memoir I wanted to read.  I do like a good memoir… I wasn’t disappointed.  A good book to me is always evidenced by how much I need to keep reading it.  If I am frustrated by the interruptions life imposes on my reading, it’s a good book.  If I have devoured it within days, it’s a good book.  Cea’s memoir of her unique, fascinating and disturbing childhood is definitely, a good book.  She writes well and her story is un-put-down-able.  I couldn’t get enough.

Years ago, back during my own left-of-centre childhood, my brother used to wear a T-shirt with
“ARE YOU NORMAL?” emblazoned across the front.  I loved that t-shirt.  We were missionary kids, we were nomadic, we were often the new kids at school: feeling ‘normal’ was out of the question.  I attended thirteen schools, so being different was the only normality I knew.
Small wonder the title of this book called to me.

I found a lot in there to relate to.  And some things that blew my mind.  Far out man.

Cea Sunrise Person belonged to a hippy family who followed their convictions out into the Yukon wilderness.  Their lives were unusual, their boundaries flexible.  Things that most people would consider strange, were part of daily normality for them.  Cea grew up living in a tipi, with no running water, electricity or modern conveniences.  She was the only child in a family of grown children and two grandparents.  Every summer, they hosted visitors who had come to learn their way of life. They lived without convention, wore clothes only when the weather made it necessary.  Drugs and free love were by products of their lifestyle.  For Cea, her early childhood was the only normal she knew.  When she was around 5 her mother embarked on a new relationship and they left their wilderness home.  By default, Cea was forced to live the life of a homeless wanderer.

Her journey through childhood and early adulthood is a tale of overcoming.  She is testament to the power of measured, thoughtful self-analysis… and courage.  Her victory over her circumstances and arrival in a place of wholeness and contentment is inspirational.  I thoroughly enjoyed reading about how she triumphed in spite of the difficulties life placed in her way.  It’s no ordinary “I overcame” story.
She’s no ordinary person.
She’s Cea Person, and I recommend her memoir.

And how is this for an opening paragraph:

I rolled over in bed, reaching for the warmth of my mother under the bearskin blanket.  She wrapped her arms around me, and I pulled Suzie doll into my chest so we were three spoons.  The birds were just starting to call.  Through the tipi poles above, I could see a patch of lightening sky.  Any moment now, our canvas walls would begin to turn from gray to orange.  It was the time of day I liked best, because it was the start of everything…

This song seems like the perfect accompaniment for this book.  It puts me in mind of all the idealistic hippies who looked for utopia and found something less.  And there is something in the sweetness of these two that puts me in mind of little Cea, lost in the wilderness of her family’s creation.  Here’s to all lost little girls, wherever they may be.  May they find their way.