Words, Margins, Bias and a Small Whisper

I have a very loving relationship with words. Words and I have been going around together for many years. But sometimes, words disappear and I am left floundering without my dear friend. Lost in the land of no writing. When that happens, I try reading. I listen to music.  I try to be more observant of what is going on around me.  I try to find the ‘muse’. But she is even more elusive than the words.

So I am just going to collate here a few things that have been skipping around my brain, skirting the edges and looking for a place to land. Usually these things arrive for me all packaged up and ready to write, but not this time. So bear with me while I purge to the page, all the little bitsies that don’t seem to fit anywhere in particular.

First and most importantly:  I got my histology results!  The “margins were clear,” which means, no more high grade pre-cancer cells proliferating on my cervix. Woop!  I am so happy about that!  It was such a weird sensation to get that news, because I wouldn’t have been at all surprised if my luck really was that bad. Ya know?!  (I’ve been reading about types of cognitivie bias, thanks to my friend Beth… this type of thinking is an example of negative bias.  You can read about 9 other types here). So I am thankful and happy and so full of the joys of spring over that very good news! That medical terminology about margins… it got me thinking about the margins of society, how some things are marginal, and some people are too.  I thought about how often I doodle in the margins. And I wanted to write a post about that, but I couldn’t make it happen. So instead, a paragraph. The margins were clear. And… exhale! By the way, did you know that Colin Firth is not just rather attractive, he’s also deeep?!  Lookie here…

 

If you don't mind haunting the margins,

During the course of my Be.Leadership programme, we have examined the concept of unconscious bias. All forms of bias. The challenges to clear thinking and accurate assessments of situations. I think being able to identify bias is a really important criticial thinking challenge for all of us. Particularly at this juncture in human history.  My cousin posted this on facebook from the Dalai Lama.  It says it better than me.  But do look also at this article if you are interested in discovering the types of cognitive bias that might be dogging your thinking. For me it is a constant search and stretch as I seek objectivity and good decision making, as a mother, friend, wife, sister, daughter, citizen. I think of these biases as ways of thinking that adjust my sails. My course can be drastically altered and I can end up way off course if I let them influence my thinking without conscious awareness.  Being aware helps me to counterbalance my thinking.

If you don't mind haunting the margins,(1)

So that is me and my jumble of thoughts today.

I also want to tell you, but almost in a whisper, just so I don’t jinx it, that I am feeling really good. Stronger. It’s not what I expected as I begin to wean off the meds that have helped me so much. So… fingers crossed.  I’m going to employ some gambler’s bias (‘it’s a winning streak!’) and let my ship sail quietly into a safe harbour.  I’ll stay there as long as weather permits.

Shhhhh, let’s not rouse the wind from it’s four corners.  Shhhhh…

 

 

 

Begat

I first came across the word ‘begat’ when I was a little girl.  Sitting through endless church services and looking for distraction, I would pore through my bible for words I didn’t know. In the Old Testament there are comprehensive family histories.  They list only the sons. But of course. Surely that isn’t where my feminism took root (or is it?).  They went on in variations like this:

And Canaan begat Sidon, his first begotten son, and Heth, and…

It’s not really a term we use anymore, but it is a useful word. The next time I heard the word begat (or a present tense version of it) was when I was a new Mum.  The plunket nurse was talking about baby’s routine.  She explained that “sleep begets sleep”.  The more sleep babies have, the more they want. And how the less they get the more and more wakeful, and therefore, harder to settle.  So I set about creating a better sleep routine.

And today, I added a new context to the word begat.   (Rude word warnings…)

Crap begets crap.

And so it was, that Crap begat Crap who

You know what I mean.  It never rains but it pours. Just when you think ‘surely nothing else can go wrong, I’ve had all the bad luck a person should get’ …a bird poops on your head, you jam your favourite scarf in the car door and rip a big hole in it, you stub your toe and miss a phone call from the radio station that would have won you a trip to Paris.

No amount of positivity works. Nope. Deep breathing is useless. There is nothing you can do but surrender to the crapfest and hope that somewhere down the line, the begetting will run out. And as my friend said to me this morning, it is okay to say “why me!?” sometimes.  I agree, but it is not easy when the kids are with me, to rail against the begetting of bad times. I’ve been trying to keep the self pity to my private moments.  The anger and the grumps. I’ve been trying to fake making it, so that the Universe might be tricked into laying off on the lessons for a while.  I am sick of learning lessons.

Universe? Take your zen-opportunities and go jump. Take your deeper meanings, your soul education, your wisdom bringing life experience.  I don’t want any of it. I’d rather life was easy and I could be shallow, thanks.

My mother-in-law is sick, she has advanced Parkinson’s.  My father-in-law is sick, we’re waiting to hear results from his recent tests to see if he’ll be having surgery or radiation therapy, or both. My brother just phoned to say something’s up with his liver and kidneys. And I spent this morning at a pre-admit clinic for the surgery I will have in August to remove pre-cancerous cells from my cervix.  It’s not a huge thing, but it is one thing too many.

I had to be there for 9am, so we were up and out of the house by 7.30 this morning, I had to first drop off my daughter and then my son both to the homes of two very helpful friends. And when I hopped back into my car to go to the hospital, it would not start. The lights were on, but nobody was home.  Glancing at the clock I realised that if I called for roadside assistance, I’d miss my clinic appointment.  I screamed then, in my car.  Let out a tiny bit of the anger that has been swirling around in my head. And I called a cab. After my meeting with the anaesthetist and the admissions nurse, an ECG and some bloods, I caught a cab back to my car. The bloody thing started first go.

See?  Bad times beget bad times.  I am sure my car wouldn’t start earlier, simply because I needed it to.  All this crappy minutae, on top of all the other stuff gets me down. My steroid trial is over and I feel myself sinking back into the quagmire, perhaps even more so after my immunologist yesterday made it pretty clear there was no way I would be eligible for IVIG. And all because I am seronegative, like 50% of patients with my diagnosis. I don’t even know if I can fight the fight for treatment any more. My steroid trial proved I have an AI aetiology, but now there is no treatment?! I can’t even explain how I feel about the shittiness of that. I feel like I am falling.

I know that my mind is a messy, noisy place.  I know I need help getting into a better frame of mind.

Let me know if you know how I can do that.

For now I am just putting it out there.  Crap begets Crap.

Untitled design(16)

Across the Ditch

Most of you know that this blog came about because I enrolled in an online course last year.  I thought it was a writing course, but it turned out to be much more.  I had been getting progressively sicker when my wonderful cousin-friend across the ditch, asked me if I would do some writing for her business blog. I was so grateful to have a thing to focus on, a job to do at my own pace… but really nervous that my writing wouldn’t be up to snuff. So I enrolled in a course for bloggers, seeking clarification on what good blog writing looked like.  Turned out that to get the most out of the course, I’d need to create a blog.  So I did.

The course I chose was run by a really ace person in Melbourne. I say ‘ace’ because that is what they say, across the ditch*.  Retro is big over there I think, even when it comes to words!  Our New Zealand equivalent from the same era is ‘choice’. Pip Lincolne is a really choice person, she is big hearted.  And her course goes WAY beyond the craft of blogging.  The community she has created is warm and supportive.  It has given me new friends, new creative inspiration, new hope and even new opportunities.  Among the many great bloggers I have met through her alumni community are the two women I have linked to below. Lila and Carly both blog with complete transparency.  They facilitate significant communities themselves and neither is afraid to tackle the big issues. Which brings me to the purpose of today’s post.

Just lately, across the ditch, there have been some terribly distressing revelations about big name health bloggers.  You might have heard about the very sad case of Jess Ainscough who recently lost her battle with cancer, despite claiming, and (mis)leading many others to believe, that she could heal herself through diet.  And then, the mysterious case of multi-award winning social media darling, Belle Gibson, who claimed to be healing herself of cancers she may never have actually had. The story continues to unfold as thousands of her followers peel off in the shock of the allegations of additional charity fraud.  Belle herself has disappeared.

Both Lila and Carly felt strongly enough about the recent events to write about them.  And what they wrote inspired me to also say something here.  As another ‘health’ blogger, I have always felt that is important to be clear with my readers about the information I provide. You’ll find paragraphs peppered through my writing, reminding you that every person with Dysautonomia is different.  You’ll have heard me urge you to seek the advice of your own medical professionals. But I am also aware that most of the progress I have made with medication and treatment, has come about because like you, I am a reader of information. I have spent years searching for the piece of the puzzle that might help. I found my piece, and I recognise that sometimes it can just be a sentence, somewhere, that mentions that one word you might need to send you searching on a new tangent.  I sincerely hope you are able to find your puzzle piece. I hope that if the piece you need is a similar shape to mine, you’ll find easy to understand words all about it, right here. If not, keep on looking, keep on seeking. And most importantly, keep on verifying what you read.

The only thing that I am expert on is my own journey through chronic illness.  If you also have a chronic illness, it will be different to my journey. Much of what occurs for me might be irrelevant to you. What I hope will be very relevant is less the treatment pathway I have taken or the specifics of my medical history, but rather, the attitudes and values I bring to this blog.  The things I have in common with every one of you, sick or not. The things that make us connect and understand each other.  The human experience.

I am so grateful to have this blog.  To be getting to know the people who are kind enough to stop and read it. To be building a community over on facebook.  So, in the spirit of Carly’s Health Blogger’s Pledge:

I promise to always write with authenticity.

I promise to use my words carefully.

I promise to carry the responsibility of writing for my community with integrity.

I promise to continue to share in ways that are helpful, hopeful and honest.

It’s a real privilege to receive feedback from you about how the words I share have helped you.  It never fails to surprise and delight me that what I am doing has a purpose and can help. It feels better than any job I have ever done, to lend my support, my thoughts, my words to people who want to read them. Wowsers!
(I’m really getting into the retro ‘wordage’ now!)

I hope it continues to be that way for those of you who have found me here and discovered a kindred spirit. I love to blog. I love blogging about and for people with chronic illness, invisible illness and differing ability. You are very cool, very resilient people. I love blogging about motherhood, womanhood, and every other thing that occurs to me and gets my fingers tapping. It’s been a diverse spread so far. I love connecting with you and your own ideas about life.  Thanks for meeting me here.  I promise I will always be authentically me, in all my honest, oversharing, emotional and verbose ways.

Isn’t it all about that?  When I share my heart and my hopes with you, there is something in you that feels the same way. Something that makes you think ‘me too!’ and in that recognition; there, that is the magic that keeps me blogging.

_____________________________________________________________

*’Across the ditch’ is a friendly expression used between Australians and New Zealanders, it describes where the other country is in relation to our own.  It works both ways. Our ‘ditch’ is the Tasman Sea.

 

Tasman_Sea
Source: Wikipedia

 

 

The Lament for the Numb

Listen to Dave Dobbyn singing his Lament for the Numb. 

Dave Dobbyn: Album Cover. Beside You. 30 Years of Hits.
Dave Dobbyn: Album Cover. Beside You. 30 Years of Hits.

Life is so busy.  I know. It’s nicer, warmer and safer to cocoon ourselves into the business of each day and shelve the big issues.  Maybe you’ve been hurt, or you are over it all.  Maybe there is nothing left after you’ve dealt with your day. But if you could pause and think about it, what are the things beyond your daily life that you care about? Deeply? What are the things that worry at the back of your mind, the things you wish you were taking some action about?

I care about kids abandoned to poverty, poor choices and the cycle of violence.  Kids who don’t even get breakfast before they start the school day. I have seen the fallout from that first hand when I was teaching in low decile schools, it worries me for the future of our country.

I care about the 27 million human souls trafficked as slaves, their voices screaming into the void, unheard.  I can’t even comprehend the enormity of what a number like that means in human terms.  Twenty seven million individuals, as important as you and me.  

 

She is a survivor of sex slavery. Kidnapped by an armed group at the age of 13, she spent the following three years under its control. Her life depended on the will of her commander, who forced her to transport dry minerals during he day and raped her nightly as his "wife." Forced marriage and its connection to enslavement remain poorly understood.  Source: freetheslaves.net
She is a survivor of sex slavery. Kidnapped by an armed group at the age of 13, she spent the following three years under its control. Her life depended on the will of her commander, who forced her to transport dry minerals during he day and raped her nightly as his “wife.” Forced marriage and its connection to enslavement remain poorly understood. Source: freetheslaves.net

I care about educating girls about how powerful and significant they are for our future.  In some countries girls have no voice and no choice, but even here in our pocket of peace, where we have no wars, no corruption, no excuse; we are not doing nearly enough to empower young women who do have choice. Why do we continue to diminish and reduce them to a two dimensional image of value, until poor self esteem boxes them into small lives?

 

Source: a girlsrighttodream.tumblr.com
Source: a girlsrightto dream.tumblr.com

Why can’t we all be kinder?  I care about the numbers of people ending their suffering through suicide.  The immeasurable sadness left in their wake. I want to gather all the sad, suffering people up into an enormous embrace.  Why can’t we look out for each other better?  What stops us from helping people who are in pain? Why don’t we ask… are you okay?

 

source: herphany.tumblr.com
source: herphany.tumblr.com

And I care about all the people suffering from poor health.  It’s everywhere you look, hideous epidemics like cancer. Such an insidious enemy, robbing people of their loved ones. I care about finding a cure. If we had a cure, I’d still have my beautiful mum.

And I care about the millions of people like me, suffering from ailments that are poorly understood by Medical Science.  Chronic illnesses are long term, vitality sapping problems without adequate research funding to create studies that will improve our quality of life. For every patient who languishes in a health system that cannot help, bowled over by their diagnosis, there is a family, suffering alongside.  There are kids, husbands, siblings, grandparents and dear friends, required to take on more than they can.  There are sacrifices and prices to be paid that will be felt long after the patient has gone.

 

Source. amf.com.au
Source. amf.com.au

I feel passionately about these things. What are your deep concerns in our world?
Pia, one of the fellow students of my blogging course, is running something called a link-up.  She sent out the call for us to write about something we care about, providing links for taking action.  The power of social media is bigger than just making connections.  So I resolved to write this post about that something I really care about, with some useful information and ways you can help, if you want to.

But I care about a lot of things.  And my magic wand is broken.

So, here are the ways that I am doing what I can about the stuff I care about.   Until that wand is fixed, doing something is better than doing nothing.  If you want to join me, here is some information and links.

To donate to or provide sponsorship to the wonderful programme that is helping impoverished kiwi kids to get breakfast and basic clothing, have a look at KidsCan.

To learn more about the horrific realities of contemporary slavery, watch this TED talk, please watch all the way until you see the images of what a reunion after liberation from slavery really looks like, look at those beautiful mother faces, I dare you.
To
 
find organisations working to help those caught in the human trafficking trade, see this directory.

For a website aimed at empowering young women in first world countries, check out this phenomenal resource:  AMightyGirl

To help raise money for Ovarian Cancer Research, you could host a “morning teal”, you can go here to find out more.  Or to join the community of people in New Zealand with Familial cancers related to the BRCA mutations, go here.

To donate to the only Australasian research that is currently happening in the field of Dysautonomia, go to my friend Michelle’s fundraising page.  Help me to do my bit for Dysautonomia awareness and research.  We are a small number of patients, but each one of us is a precious human being who is desperate for more answers.  Maybe your bit will help?


And I care about YOU with all my heart.  You have a battle on your hands, no matter who you are, no matter what your life’s story is.  You are human.  It is a pretty raw state, it hurts sometimes.  Sometimes you feel so numb. Even if you can’t see the hands reaching for you, they are there.  Take action. You can grab hold of a hand, or even just let one grab yours instead of pulling away.  Connection is what keeps us all together.  If you have been feeling like leaving, please don’t.  Grab hold of a hand, or ring for help, set the wheels in motion.   Look here, or call these good people, or talk to the people you love.

And if you are reading my blog because you too suffer from a chronic illness, here are some things you can do to practise some self-care  I have them on good authority, my Health Psychologist gave me a chapter to read for homework last week.  It’s called “A Caring Hand” from this book; The Reality Slap by Russ Harris.  My Psych is a good ‘un, so I am passing on these nuggets to you.  I wish it were my own, real caring hand that could rest on your shoulder today… do know that my heart is with your heart.

Thanks Pia, for your wonderful call to action.