Think/Writing

When I am not actually writing, I am think-writing.  Do you do that?
Entire sentences or small phrases get worked and reworked in my mind. Like a boiled sweet tumbled over and over in your mouth, savoured until all the sweetness has dissolved into a sharp, final shard. Then; gone.

Sometimes I remember what I wanted to write about, but most often it is an ephemeral mist by the time I pause long enough to retrieve it.

I’ve just been so occupied lately that there has been very little time for ‘me’ stuff, like blogging. The moments I have of solitude, have been away from my keyboard, or without pen and paper. So all the writing has just happened up there, in my own mental ‘cloud’… if only it was a true backup disk! I miss writing here so much! Hello again, people!

I thought I would do a little catch up piece today, in the vein of the wonderful Pip Lincolne’s Taking Stock posts. This is how things are right now. How are they for you? Feel free to copy and paste and add your own list to the comments. I’d love to know what’s going on in your world, too!

Making: Every minute count. That often means my days start at 5.30am to feed horse and walk dog before all the other commitments.

Morning sky. The gift of early rising.

Cooking: big family meals mostly. Our current favourite is my Chicken and Leek Pie. I’m also making the occasional batch of cookies. Just recently my friend Flo gave me a recipe for oat choc chip cookies and they are SO DELICIOUS and EASY! Reckon they’d be good with cranberries too. Sing out if you want the recipe.

Drinking: Gin and Tonics made with lemons and limes from our own trees. Gin-and-tonic-time is a bit of a favourite time to get to at the end of each very busy week!

Reading: Nothing, not even newspapers!

Wanting: A large docile Clydie-cross all for me… and a country property to bring him home to. Ha! Dreams are free.

Meantime, here is my girl’s beautiful horse, Rosie. It’s a close second.

Looking: closely at the detail of nature. Right now I’m into raindrops on roses… well, raindrops on anything. So beautiful.

Playing: Dixie Chicks “Cowboy, Take Me Away”

Deciding: what is the best kind of education for a divergent child?

Wishing: I had more time in each day so that I could really actually get to the bottom of my to-do list, even just once!

Enjoying: the company of our giant doofus doggie, Wookiee.  Have I introduced you to this very cool dude yet?  Meet Wookiee the 8 month old Labradoodle, favourite member of the household by unanimous vote.

Wookiee Cox, beloved labradoodle.

Waiting: for it to be acceptable to put my Christmas Carols on repeat

Liking: being a zookeeper

Wondering: if Nik Kershaw has any current music… (off to google)

Loving: the smell of chaff

Pondering: the sense of this crazy-busy urban lifestyle we lead

Considering: whether we should investigate that…

Watching: nothing. Too busy.

Hoping: The weather stays horse/dog friendly for the entire summer holidays

Marvelling: at how much I can do these days. Like; I do something, then I can do another thing(!) and then I can keep going and do another and another. It’s amazing!

Needing: a remote thoroughbred feeding/checking/smooching system

Smelling: like a farm most days

Wearing: gumboots and old jeans with the occasional foray into teaching attire

Following: the weather forecast like a country girl

Noticing: how often I crave the wide open spaces and solitude

Knowing: the run from here to Christmas is going to be mayhem

Thinking: that we are so lucky to have such a great local high school to send Bee to next year

Feeling: emotional a lot lately, guess it is that time of year again when my thoughts are drawn to all the people I love who aren’t here anymore

Admiring: my girl and her tenacity during her first one day event recently

The girls during their first Cross Country

Sorting: my “Rachie Drawers”… those generic holding places where things go and disappear. I’ve lost my engagement ring and I need to find it!

Buying: hmmmm. A horse float and a new horse have removed our buying power for anything else at present, but oh it is soooo good to finally have a float!  And lovely to have the beautiful Rosie in our family.

Getting: worried about what the above will do for Christmas buying

Disliking: our dog’s penchant for courier packages. I think he thinks they are chew toys delivered conveniently just for him; something new every time!

Opening: my mind to new possibilities as the New Year approaches

Giggling: at all the hilarious things our Zed says and does, he’s very funny… most of the time!

Feeling: worried about whether my mothering is going to benefit my kids or hinder them, they’re getting older and so much more independent. My mothering is struggling to keep pace with their rates of inner growth! I hope I can find a way to be a less anxious mama.

Snacking: ooooh. Snacks… that sounds good. I wonder what I can find in the cupboard?

Coveting: good camp chairs. Ours are all torn and overtaxed from our large-arse situation.  Pony Club camp is just around the corner!

Wishing: the Christmas rush was over

Helping: Riding for the Disabled with their cookie-icing fundraiser was fun!

Apologising: less than before. I like that I am learning NOT to apologise so ceaselessly for everything. It’s exhausting feeling responsible for myself, let alone for others.

Hearing: a lawn mower, children playing at the kindy next door, cars whooshing by, the wind in the eaves, the rustle of leaves, the birds singing with Spring happiness as if this season will never end. Yet, it will and I am grateful for that. A big part of me is craving winter hibernation right now!  I am happy for warmth and nice weather, truly.  Just keen for a bit of a break in general…

 

Here’s the list. Your turn!
Making :
Cooking :
Drinking :
Reading:
Wanting:
Looking:
Playing:
Deciding:
Wishing:
Enjoying:
Waiting:
Liking:
Wondering:
Loving:
Pondering:
Considering:
Watching:
Hoping:
Marvelling:
Needing:
Smelling:
Wearing:
Following:
Noticing:
Knowing:
Thinking:
Feeling:
Admiring:
Sorting:
Buying:
Getting:
Bookmarking:
Disliking:
Opening:
Giggling:
Feeling:
Snacking:
Coveting:
Wishing:
Helping:
Hearing:

Useless

Hello, my name is Rachel and I am a useless blogger.

nametag

When I was little, the single most frustrating retort from my mother was when she would close my most recent, incessant argument with:

“JUST. BECAUSE.”

I needed a reason why I couldn’t chew gum/ wear a t-shirt with ‘easy’ emblazoned across the chest/ yell at my maths teacher (all true stories).  I needed reasons so I could keep arguing. So she would tighten the set of her jaw and shut up shop. Just. Because.  It’s taken being a mother myself to understand the value of the statement. It’s a full stop, a justification in and of itself. It’s enough, already. It’s when something needs simply to be accepted.

Back to this blogging malarky. It used to be that I would write a couple of posts a week, sometimes more. Each around 800 words apiece. I’ve amassed a large archive of words. But more often than not these days, I’m so busy in my offline world that my online world makes much less noise than it used to.

When I started blogging, I studiously ticked the boxes on the ‘backend’ of my blog. I fretted over my ‘niche’ and tried to quantify my ‘audience’. I ran giveaways, launched ‘series’, built awareness for my illness community and cared more about ‘SEO optimisation’ in my writing. But these days, I care most about writing. Just writing. If you are reading this I am so genuinely grateful, because I haven’t done much to bring you here or keep you here. I’m just being me, writing my story, in post-sized-bites.  I guess, technically, that makes me a useless blogger, a tag I am really proud to wear.  Because blogging is about much more than all that useful stuff. Blogging is about self-expression, about reflection and learning. For me, it’s a record of my thinking, an archive of my journey.

Veggiemama (Stacey) from Melbourne started it all. You can read here about how the useless-blogger-groundswell began, that my mate from I Give You the Verbs (Annette) turned into a movement, complete with it’s own hashtag (#uselessblogger), that ate the cat that swallowed the fly. I don’t know why we swallowed the fly, perhaps we’ll die!

It’s a grand thing to know that my blog can continue, ‘useless’ as it may be. It’s a bit extravagant maybe, blogging anyway, blogging about all of my life, not just one part of it. Writing even when what I have to say comes out and I think ‘yawn, who is going to want to read this anyway?’. But I have great faith that my readers, like you, have free will, and will only read on if you want to. If you don’t that’s fine with me too. There are blogs that I have lost interest in over the years. If you are here it’s because you want to be. I like hanging out with you! Thanks for staying.

This whole ‘useless blogging’ thing resonated with me. The blogs I love most are the ‘useless’ ones. The ones people write for the love of blogging, not the pursuit of followers.  The ones that bare it all, that lay their hearts out on the screen, full of authentic power. The vulnerability, the mundane, the beautiful normality of life. And sometimes, too, the pain.  I love these blogs because their authors care most about being real. It’s much more interesting to me than a pretty splash page, a new header image, or fancy widgets. Those things all have their own merits, but it’s content that floats my bloggy boat.

Do you blog?  Are you a ‘useless blogger’ too?
Join the revolution!  Be a daredevil and blog,

just. because.

Weightless

This is not a diet post. But it is all about how I shed some dead weight that was keeping me down.

It all began with blogging.

Some of my friends didn’t like me blogging, they felt it was too public, others commented that I had too much time on my hands or that it was narcissistic. Those comments stung. But blogging has proved to be one of the chief delights of my life. You see, as my health declined, so did my self esteem.  I felt that I grew less useful and more of a burden as time progressed. I watched myself get sicker and less mobile as if I was watching from outside of myself. And there was, at times, a kind of loathing I felt for the girl I saw living in my skin and dealing with those problems. She was living on a different planet, with a gravitational field ten times the weight of earth’s normal. She had sunk low, very low into the quagmire. And she didn’t think she would ever re-surface.

But blogging threw me a lifeline, it kept me present, it forced me to examine what was happening in my life. I smile now to think that becoming a blogger was actually accidental.

Building a blog was a brilliant thing for me to focus on. It brought me out of myself utterly and forced my brain to work in new ways. It gave me further writing opportunities and I had the chance to dabble again with rudimentary graphics, something I love to do. Almost as much as writing the posts!  And the writing was therapeutic. I was on a roll, but still interrupted by self doubt. Then, a few weeks into the course, I discovered blog stats.  A lot of bloggers don’t pay them any mind at all, they don’t like to look at them and they don’t like to attach meaning to them.  But for me, it was like an objective, definitive message every time I looked at them. For the first time in years, I had performance feedback. It was like water in the desert! And then people began to comment on my posts, and I had connection and conversation about my writing. It blew me away.

Since I started blogging (if you average it out) I’ve had 4000 hits a day, according to the stats provided by my web host.  So that is how it began.  My confidence started to grow because something as meaningless as numbers on a screen showed me that I don’t have to be cool to have something of worth to offer.  Well that is how I interpreted it. Every click on my site felt like validation! Blog stats are a funny thing. There’s a big difference between hits and page views, and purists who crunch numbers get really into all the permutations and details of all those stats. I actually don’t give a rats about the technical meaning of those stats. What they meant to me, was that I had something to give. People wanted to read my words.  And that was the beginning of seeing my worth as separate from my health.

Writing a blog opened up other opportunities for me too. I was accepted on to a Leadership Programme for people in the disability community. I was very excited to learn more about social leadership in the field of chronic and invisible illness. I hoped the leadership programme would help me to step into something much bigger than myself.  I listened to some of New Zealand’s most influential leaders in social change.  Every speaker gave me food for thought. Every reading taught me something new. But even better, that programme taught me something you only learn from experience. I learned in a very real way how to stand up for what I believe in. I learned that I can survive judgement and criticism, that it can help me to focus on my core values and test the things that I say are true for me.  I learned that sticking up for myself is empowering and builds strength. I learned that I can cop flak and carry on.  The lesson was painful, but it healed, and I grew.

That particular lesson would prove a very useful tool in my personal growth.  In August last year, I got the opportunity to embark on a new line of work; plus size modelling. It was extremely left field.  I have not felt beautiful for a long time, I wasn’t sure if my outer package could be considered a bankable commodity. But I got signed by Vivien’s Model Management at 41, older and fatter than I have ever been… yet healthier and happier than I remember being.

My year in the Leadership Programme had coincided with six months of immune modulation therapy and a further six months of oral steroid support. It kicked my immune system into line. I was in remission! And modelling, a preposterous concept the year before, was actually a possibility. I went for a test shoot in Sydney. I started work as a model for the agency 62Models.  In October, I volunteered to do a breast cancer fundraising lingerie calendar.  Something well outside of my comfort zone. We were photographed out at Ambury Park Farm on a blustery Sunday, lying in the grass in our bras and knickers. But I did not expect the publicity that it would bring.

 

Photograph by Mike Mikha for the NZ Plus Size Calendar by Regina and Peachtree
Photograph by Mike Mikha for the NZ Plus Size Calendar by Regina and Peachtree

Fatness is a fact of western society. We live in a world of plenty, we are time poor and we are sedentary. We are yet to grapple with the problems that obesity brings us as a country, but let me just address the elephant in the room (no pun intended), it is a real problem.  More than 60% of women are over size 14 and considered ‘plus size’ by our fashion industry; but that doesn’t mean over 60% of women are obese. My own fatness is the result of six years of illness, medications and an inability to exercise. And my love of cake!  I acknowledge the facts of my fat. It would be better for my body if I was not this heavy, yet I am. And my size does not dictate my worth. I don’t celebrate my fat. But I do celebrate having womanly curves and stepping into body confidence regardless of size. I do celebrate honouring our bodies for what they do for us instead of putting ourselves down. These bodies go through so much, and often things out of our control. Fat is a complex issue.

Media interest in the plus size lingerie calendar resulted in a long discussion on TV3s facebook page. A number of people wrote deeply hateful things about fat girls in their comments. I watched with dismay as the brave, lovely ladies who posed with me for such a good cause, became targeted by the comments levelled at the models.

“They should all be taken back to the farm and trained like the pigs they are”

“I would not want any of these women to be role models for my daughter”

My dismay was not about the comments, although they are awful. My dismay was that some of the girls were letting nasty words decimate their sense of self. Opinions are cheap. I see now that any person delivering criticism at my door has to be someone I really respect for it to hurt. I know this, because I wasn’t hurt in the slightest. In fact, I wanted everyone to ignore those comments rather than bite back. I have reached a place where criticism has found it’s proper place in my head. Realising that I wasn’t hurt by those words made me pause and think about how far I have come.

I’m just being me. Doing my thing. Using my voice about the things that I feel strongly about. My voice won’t always agree with everyone else’s. My thing won’t always be your cup of tea. Who I am might cause you discomfort or make you feel like judging me. And finally, at this ripe old age, I am okay with that. When I started blogging in May of 2014, I had no idea that I was really starting a journey in knowing who I am, what I stand for, and what I will put up with. I had no idea that I was girding myself with the truth of who I am as a human being. Learning how to activate my force field and deflect the worthless words of detractors.

If you are feeling weighed down and your self esteem is at an all time low, please find something to do that brings you joy. Take a step into the passions that give you a sense of success and provide you with useful feedback about who you truly are. Every single person on this planet is worthy, has something to give and a soul purpose.  Ignore those stupid detractors in your head or in your ear. Tell them where to go. You have much more to do than spend your life anchored to a negative perception of yourself. Find your thing. Find your self.  Let go of the shackles and heavy burdens you carry, you’d be surprised how much easier it is to travel without the weight of all that.

___________________________________________________________________

Here is one of my favourite songs of all time, oh James Taylor! I referred to it in a competition I entered the other day run by a NZ designer label, Euphoria, it’s all about how confidence is beautiful. If you are interested in helping me out with a vote,  you can find my entry heremine is the one titled ‘Up On the Roof’. 🙂

…and listen to this soul-weight-lifting song all about getting away from the quagmire, here:

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…

 

 

 

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

The Unplanned Pregnancy

This post is kind of special!  It’s…glitter numbers proclaiming The Chronic-ills of Rach's 200th Blog PostHe he he!  I think that means I can call myself a BLOGGER!

It was a bit accidental, becoming a blogger. I’d been doing some writing for my cousin’s website when she joined me to the Australian Blog Chicks group on facebook. Someone there recommended a blogging course.  It made me think that maybe there was a particular way to write for the web and maybe I needed to learn how.  At that time, I was in bed for a lot of every day too, so an online course seemed like just the thing.  I enrolled in the ‘Blog with Pip’ course for May 2014.

But Dysautonomia put me back in hospital just as it began. I was devastated to miss the start, but Pip set my mind at ease and encouraged me to begin anyway. Her course materials are available beyond the course dates, it was a huge relief!  However, I quickly realised that I’d need to actually have a blog to get the most out of the course.  And that is how The Chronic-ills of Rach began.  A bit like an unplanned pregnancy. Sudden, unexpected, but nice… once you get used to the idea!

And like a ‘whoopsy’ baby, the arrival of my blog illuminated the fact that having one was exactly what I have been needing, without ever knowing it!  Blogging has been wonderful for me. I’ve been able to write out things that help other people, but in doing it I have helped myself. It’s been therapeutic, educational, stretching. I’ve had a platform for discussing important issues, an opportunity to raise awareness, a space for making personal reflections, an outlet for my creativity and the beginning of a brand new direction and purpose in my life.

As a kid, I always thought of myself as a writer, but somehow the years between then and now convinced me that dream was for someone else. Like I couldn’t legitimately claim it, or it was too late, or too lofty an idea. Over the last twelve months, post by post, I’ve been claiming back my territory. That dream is mine! I am taking it back. I’ve been using my words. Like a big girl.

Thank you for reading my blog.  🙂  A blog is just a diary if no one ever reads it and I am so glad you have chosen to click on over.  Really, thanks!  You make my day, after day, after day!  Your comments, your presence, make the writing so much more meaningful for me than just navel gazing.  I have a context, we have a conversation. It warms my heart.

According to my web host, I’ve had 1,115,155 hits since I started last year.  Woohooooo!  That number makes my mind swim.  I’m blogging from a tiny country at the bottom of the world and my biggest numbers of readers come from the US, France, Germany, China, Latvia, Australia, Ukraine, Italy and Russia, in that order. Of course, some of my ‘readers’ are probably internet crawling robots, but I don’t care (!) all are welcome here, especially if they contribute to giddy numbers like the one above.  Happy days.  I am in a celebrating mood.  Might have myself a cuppa.

Well done little bloggy baby.  We’ve made 200 posts together.  We’ve made new friends. We’ve made a difference, and if the difference is only for one person who felt less alone because of my words, then it is worth all the effort.  If you are thinking of beginning a blogging journey, I can’t recommend it highly enough.  Try Pip’s outstanding course.  Get amongst it, I promise you will surprise yourself.  Blogging is a gentle, collegial, congenial way to flex your writing again.  Why not?

And if you are a blogger already, please leave a link to your blog in the comments below.  I’d love people to find your blogs through my blog. It’s a bit like a neighbourhood block party.  Blog party!  Heh!  Leave a link and tell me how blogging got born for you.

Ciao!
Rach

No Harm

Four years ago, in a neurology outpatient’s waiting room, somewhere in the southern hemisphere…

I’m your eighth patient today, here in this clinic.  Before that, you were doing ward rounds with your students, you’ve barely had time for lunch.  I don’t know this for fact, but I know you’ve seen a lot of patients from the slump in your shoulders, the way you don’t look up when I am too slow to follow directly behind you into your space.  You finish reading something on your computer, maybe it’s my record. You push your keyboard away, sigh and swing your gaze towards me. It rests on me for a nano second.  Then it flits to somewhere over my left ear. Your brain is busy, I can see that. Who knows what thoughts are travelling through your mind?  Not me. But I try to guess, trying to read your body language; trying to find the right way to talk to you based on the incomplete information in front of me.  My first instinct is to apologise to you, for making your day busier.  I give myself an internal faceslap. Your time is valuable, it’s true.  Mine has no monetary value.  The numbers a neurologist like you can earn are a reflection of your worth. But that thought doesn’t seem to cheer you.  You rub your temples and say:
“Exactly why is it you are seeing me!? You POTS people don’t need a team of physicians, you know.  A cardiologist should suffice.”

I’ve been waiting a long time to see you.  Hoping that seeing you is going to make a difference.  I hear you have a brilliant mind, that you might be able to help me. Waiting for this appointment has kept me going.  I know that my medical history is long. I know that the things that have been going wrong for me don’t seem to add up.  I know that I bring my burden of hope and lay it at your feet.  And I see that you don’t want it.  I wish I could have brought you in a cup of tea.  Might you have smiled if I had?  Might you have seen who I am, beneath the data on your screen?

“I am sorry,” I say, my voice barely audible.  “I have a neurological condition and I am seeing you because you are a neurologist”.

If you are taken aback by my response, you don’t show it. Your head swivels back toward your screen. “Tell me more” you intone.  So I do.  I tell you my symptoms as succinctly as I can while you scan through my notes. “hmmmm” and “yes, I see” and “ah”. The nods as we cover each autonomic oddity. You do a neurological exam.  We sit down again. When you look at me, it is as if you are seeing a puzzle. You’re analysing the information you have gathered. You are searching for the placement and order of the pieces so you can see the whole. The pieces suddenly slot into place.  Satisfied, you rock back on your chair. Your next sentence is certain and clipped.

“You don’t have POTS”.

Do I suppose, at that moment, that a cardiologist might not suffice after all? I look at you, wondering what is coming next.  But I am not surprised.  I never really felt like POTS was the whole story, it just didn’t fully explain everything. So I wait for your view of things.

“You have Pandysautonomia.  Pan means ‘all’ and Dysautonomia, well you know what that means, a dysfunction of your autonomic nervous system.  It can’t be auto-immune, because your blood tests are normal*. It appears to be progressive. You’ll be happy to know that breathing is usually the last thing to be affected.  You’ll continue to decline, and then, eventually…”   You don’t say the next part.  You tell me to go an do the things with my family that I need to do while I am still able. Then, you clear your throat, raise your eyebrows and meet my eyes, properly. You push your chair backwards and explain that you have no need to see me again, you’ll send a letter to my General Physician.

You stand, and as I look up, you ask,
“-any questions?”  
and I see that I am dismissed. My inner roar of frustration is silenced, replaced with a whimper as I survey the decline and fall of my future. The small feral creatures of uncertainty that populate my mind have grown into monsters in a few of your short sentences.  I stand, thank you for your time and leave your rooms.

I sink into one of the waiting room chairs.  I am shaking from the effort of holding myself upright throughout the appointment. I’m devastated. I thought you might tell me that all I needed to do was x or y.  I was even prepared to try z. The stress of the interaction has sent adrenalin coursing through my blood stream.  I feel the usual battery of autonomic warning signs.  I wait it all out, half reclined, embarassed, listening to the hammering of my pulse between breaths. I am suspended there, in the waiting room I am desperate to escape from. I think about how you must not know how terrifying you are.  How scary your words. How easily you could have reassured me.

You are already seeing your next patient. The waiting room is so full of people.  I wonder how many of them are for you.  I wonder when you will get your cup of tea.  When you will get to escape from the burdens that crowd your clinic rooms. I wonder what you are thinking as you face that ninth patient.  And I wonder if you really love what you do anymore.

So yes, I am sorry.  I’m sorry you are busy. That the Medical Profession isn’t what it used to be. I’m sorry to be one of the many who demand yet another slice of your mental gifts, your time, your attention.  I’m sorry that you have lost, or maybe never had, the ability to connect with the person sitting in that chair across from you.  Your intellect is a beautiful gift. A valuable gift. Your education and years of training have positioned you to make a living from that intellect.  And just as any person (making a living in a service role) needs to have interpersonal skills; so do you.  If a McDonald’s cashier can afford me a smile on minimum wage, I kind of think you should be able to manage one. I’m sorry to be the one to tell you that, because I don’t think anyone else ever has, or maybe, no one since Med School. I wish I had been strong enough to tell you when I was in your rooms.

Take a break, doctor. Make some changes to your schedule. Fix the system, if it is the system that traps you in such misery. Take a look at the person behind the records, and the person in your mirror.  Both are beautiful, complex, intricate human beings. Try a small smile, a minute’s reprieve from your analysis and timeframes.  And if what ails you is exhaustion, it might be good to remember that you are not Atlas.  You shouldn’t need to shoulder the planet alone. A holiday might make all the difference, you could take one.

Remember that the words you tell your patients are always significant to them. But the things you tell them with your body language speak louder than anything you say in words. And if it all carries on this way, you are not only hurting your patients with your brusque and bullish manner, you are denying yourself one of the greatest joys of medicine. That magical interplay between doctor and patient, when your skills and their need combine to create a job well done.

It’s great to have a masterful intellect. But, did you forget?

First, do no harm.

*general auto-immune screening won’t necessarily show the antibodies implicated in autonomic dysfunction.

Future doctor_pateient(1)

__________________________________________________________

It’s a long time since that appointment. I write about it now, because I spent four years believing, yet fighting, what I was told. That I was on a progressive trajectory, that I would decline towards the ultimate end, that I should do what I want to with my family while I still can.  That is a pretty harmful idea to live with. Or a helpful one, depending on your perspective.  But it is certainly painful.

I’ve since had a much, much better appointment with the same neuro. I don’t hold a grudge anymore about that first appointment, but I think it is illustrative of the difficulties faced by chronically ill patients being seen through the hospital outpatient system. And also of the difficulties facing our chronically stressed doctors. Our bodies may be sick, but their system is also sick. My subsequent search for more answers to all my questions, eventually led me to an immunologist.  My response to immuno-suppression indicates that my problem is indeed auto-immune, and absolutely able to be treated with immune modulation therapy.  I don’t expect my neurologist to have known about auto-immune autonomic antibodies.  But I did expect him to be compassionate and want to help.  Perhaps to do some research with that clever brain of his. Or phone a friend!

What I am saying is that I would like to see a future where doctors understand that they have a wonderful opportunity to limit the harm their patient’s endure, simply by being nice.  I believe that Hippocrates was not only talking about physical harm in his oath “First, do no harm”.  I’d like to see a future where kind doctors are recognised and rewarded for the extra efforts they make with their patient interactions.  And where hospital systems improve the working conditions of all their health workers, including doctors and specialists.  And maybe, one where girls like me; the apologising kind, find the strength to say their piece when they should.

Have you had an interaction with a specialist like the one I talk about, above?  I’d love to hear about it.
Do you think something can be done about the pressures facing doctors in our modern medical systems?

The Religion of my Heart #1000speak

On the 20th February, #1000speak will have it’s day.

#1000speak is a blogging movement for compassion. Over a thousand bloggers will be writing about compassion on the same day, in an attempt to bring more balance to world.  In an attempt to focus on the beautiful things about humanity.  The way we are able to get alongside one another and help each other, empathise with one another and even take action toward making life better for others.

Compassion

The subject of compassion is one that is close to my heart. A huge part of my purpose in blogging, has always been to improve awareness and understanding about people with ‘invisible’ illness.  Why?  So that people will have more compassion towards the people in their community who are suffering. Invisible illness sufferers, people with chronic illness or invisible disabilities are not the only people suffering, but they are people whose suffering I understand first hand. I know how desperately frightening, lonely and difficult it can be, living with an illness people neither see or understand. And I want to write words to help people see it, to help people understand it. I hope that my blog, my efforts will make a difference for someone.  I hope that their families and close circle might read the words of someone like me, who knows what it is like to deal with the things their loved one is burdened with.  I hope that my words might give them access to a new comprehension of how it is for them. It’s why I wrote this post, Imagine.  It is still the post that draws the biggest numbers, because it explains chronic illness in a way that any person can understand it.  If you are struggling to find a way to explain your illness to your friends and family, share Imagine with them.

When you look at the latin root words for compassion, you will see why compassion is so central to my purpose.  Com means withPati means suffering.  Compassion means to suffer with.  It is closely aligned with empathy, but not the same thing.   Back in June, I wrote this when I was reflecting on my relationship with religion, it is deeply entwined with my thoughts on compassion, so I thought I’d include it here.

“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”.

As I prepare for my February 20 post on compassion, I’ll be posting things here on the blog and on the blog facebook page.  What the world needs now is more compassion.  When we can suffer with each other, regardless of the differences between us, we will find a new road towards peace, love and understanding.

Watch this from Brene Brown:
https://vimeo.com/81492863

Getting Grown-Up

Happy New Year

Every New Years my hubster and I sit out on our balcony after the kids have gone to sleep.  We eat fancy cheeses, oat crackers, pepitoes and plump olives… and my favourite; grilled artichoke hearts.  We toast another year. We talk about how it has been and stubbornly focus on the achievements, congratulating ourselves for what we have managed.  Then we plan the next year together. As the years pass and my body presents more challenges, we’ve been surprised by how much we can still do.  Together.  2014 has been a good year for us as a couple. It’s been good for us as a family.

It’s taken all year, but our minor renovation downstairs is complete. Happy sigh! A good year for finishing things, tying up loose ends.  Getting more organised.  We are starting to feel like grown ups. I turned forty this year; next year, he’ll turn fifty.  Takes a while, getting to this grown-up feeling!  Once upon a time, we used to go to New Year’s Eve parties.  That’s just not feasible anymore, and you know what?  We don’t even miss the sparkle and excitement, the social stress, the late night, the hangover.  Last year we rang in the New Year at 10pm and tucked ourselves up in bed.  It was perfect.

We have a decoration on our tree, it is a hanging, lidded gift box, crammed with tiny notes.  This year, when we were decorating the tree, my son asked me what all the folded pieces of paper inside were. He had never noticed them before.  They are all our plans for all the New Years. Written in tiny script, hopes and goals and aspirations, folded into the smallest possible wad and added to the years before.  I showed him and his interest skipped off elsewhere, the way it does when you are seven and Mum shows you something less magical than you expected. We, however, always look at previous years nostalgically when we add a new one! It’s amazing how many of them have come true.  Is that because we wrote them down? Planned for them?  Is it really that simple?

What are you planning for in 2015?

Next year holds so many unknowns for me.  I am supposed to start IVIG treatment.  That will run for six months. I’ve been accepted into a leadership programme, for people who show promise as a voice for social change.  For me, that means really working on using my voice to promote understanding of invisibile illness and invisible disability in New Zealand, building leadership skills, increasing my network.  It’s an incredibly cool opportunity, but I don’t know yet if the first will preclude me from the latter, I’m waiting for some dates to know for sure. I feel like I am suspending my excitement in case it doesn’t all fall into place.  But, OH!  What if it does?!

What is certain for me about next year is that I will be wife-ing, mothering, writing, and getting involved with life in as many ways as I can.

I’ll be spending a bit of time (as much as I can manage) out in the countryside, where my daughter rides; drinking in the goodness of green paddocks and the sweet smell of horse feed.  I’ll be stroking the warm neck of her wise and good pony and watching my girl follow her bliss, hair flying out behind, grin on her face.  It’s the best soul food on the planet, watching your children do the things they love.

I’ll be wrapping my arms around my little guy as often as I can. I feel that he is moving on up into a new stage and the little boy sweetness of his cuddles is making way for boundless, urgent energy. He’s a big kid now, a purple belt in karate, a story-writing, poison-ball-tramp-champ-justice-leaguer. He’s growing up and I am treasuring the last vestiges of my baby boy.

I’ll be working on some more pro-active health measures.  I want to improve my gut motility somehow, so I am going to work on what I feed it, I’ll be giving my intestines a rest in the very early New Year by starting a liquid diet.  I had a gastrograffin study which showed, when compared with my recent gastric emptying study, that liquid transits through my intestines with much more ease than solid food. So goodbye cake! I’ll be souping it up instead (know any great soup recipes?). I also want to do all that I can for my general mobility and my fitness, so I am going to the rehab centre to work on my exercise program. I’m excited and hopeful about what that might do.

I’ll be here, blogging about my life with dysautonomia, and all the other things besides.  I’ll be connecting with you over on my Chronic-ills of Rach facebook page. I’ll be emailing, advocating, writing and doing the work I have been given to do.  There is so much more of it.   Hang around with me, I’ve just got this feeling that 2015 is going to be a good one!

How do you celebrate New Years?  Can you?  Do you have little rituals too?

Calling out My Name

So many exciting things have been happening in my life lately.  Thanks to my friend Sheryn, I made a connection with an organisation called Be.Accessible who are passionate about creating social change in New Zealand. Their vision is for our country to be wholly accessible, so that anyone of us can just, be.  It’s a vision that has a great deal of synergy with my own. My own efforts towards building awareness and understanding in our community here in New Zealand (and with people online everywhere) are all about that.  About promoting understanding and acceptance.

Sharon Davies   Be.Leadership Alumni

I feel very strongly about helping people with ‘invisible’ illness and or disabilities, chronic illness and rare conditions that people find hard to comprehend. I write not just for me, not just for people with Dysautonomia, but for anyone who suffers the torment of not being understood, of finding judgement where they should find kindness.  I use my words so that others might find something they can share with their loved ones. A way to explain what they haven’t been able to explain.  Sometimes it is hard to find the words.

Doing that.  Using my words, has brought me to a surprising place in my life.  My health continues to deteriorate, but my heart and mind are filled with bigger and better thoughts than ever before. I saw my Granny today and she asked “Are you well?” and I could honestly reply to her “All is well with my soul!” I have a purpose and a direction that I never even knew was in my future.  I thought everything was so lost to me. I thought all of those things were out the window. Gone. But here I am, about to embark on something new.  The joy bubbles up from inside, how surprising and wonderful life can be!

Last night I attended an event here in Auckland, down on the waterfront.  It was the graduation for this years participants in the Be.Leadership programme.  The programme aims to mentor people into positions of greater social leadership by providing a year long programme of discussions and learning with some of New Zealand’s great leaders.  Among other great initiatives!  The program cost is $17,000 and this is fully funded for selected participants.  I have applied (squee!) and I am waiting to hear what happens next… so watch this space!

Sharon Davies   Be.Leadership Alumni(1)

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Last month I began writing for the parenting column of a popular Dysautonomia Newsletter in the States. And I met my editor, Ellen, online.  Sometimes when you meet someone, just as it is in person, you just click right away. It was like that with Ellen. She understands me and we have had lots of wonderful email conversations, back and forth from one part of the world to another. She is a wonderful encouragement to me. Recently she sent me this song. It stopped me in my tracks. What a voice. What lyrics!  Thanks Ellen, this song is my new anthem, it so perfectly expresses why I continue to find things that I CAN do.  Life is calling out my name.
Here is Beth Hart singing “Life is Calling”

 

…and, the lyrics…
Sunday morning, the world’s still sleeping
And the rain keeps falling like angels weeping
And I, I feel the tears on my skin
They’re trying to tell me something
I listen

Blues and yellows tap on my window
And I let the night go with all my shadows
And I, I feel the sun on my skin
It’s trying to tell me something
I listen

Life is calling, life is calling
Life is calling out my name
Make it matter, say it louder
Stay alive another day
Life is calling out my name

Perfect houses with good intentions
Where the happy families hide their broken dishes
And I, I hear the scars on my skin
They’re trying to tell me something so
I listen

Life is calling, life is calling
Life is calling out my name
Make it matter say it louder
Stay alive another day
Life is calling out my name

It’s the wind over the ocean
It’s the secrets in the sand
It’s all trying to tell me something
So I’m listening

Life is calling, life is calling
Life is calling out my name
Make it matter just say it louder
Stay alive another day
Life is calling, life is calling
Life is calling out my name