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.

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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:

Copping Flak

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

use our voices

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

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

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

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

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

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

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

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

From my heart to yours. x

Claire Barnier -Creating Beauty out of Chronic Illness

Welcome back to the ‘Meet my Peeps Guest Series’.  Today on the blog, Claire Barnier, Melbourne milliner extraordinaire, ex-medical professional, social support network administrator and vintage babe, is going to share with us her passion for millinery. Sometimes, passions grow from gardens fertilised through hardship.  Claire won’t dwell on her health issues in her piece below. In her writing and her life, she prefers to focus on the things that bring her joy.  Here she is, a girl I have great admiration for.  I give you the ubertalented, Claire Barnier:

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Hi there, my name is Claire, I’m 30 years old and I have Dysautonomia.  I also have Ehlers Danlos Syndrome, Common Variable Immune Deficiency, Endometriosis and Adenomyosis.  Taken individually my medical conditions are not nice, but could be relatively manageable. All together they are not much fun at all.  They like to impact on each other and no one condition likes to be forgotten about for long.

My health has been pretty crappy for as long as I can remember but I always recovered, eventually, more or less.  Then 11 years ago (exactly 11 years ago this month) I got sick and pretty well stayed sick.  I had my biggest break from it for a year when I finished studying nursing and began my graduate year but the stress placed on my body from shift work and frequent infections pushed me over the edge again.  By the end of that year my body decided it had had enough of being pushed to the limit and crashed big time; I am still waiting to recover.  If I had known then that I had an immune deficiency my choices may have been different.  If just one of my ENT specialists had thought to check my immune function in all my 20+ years of struggling with chronic and recurrent sinusitis I might not be where I am now; sitting on the couch in my pajamas writing on my computer like I have most days for the last 2 months since I came down with this latest sinus infection.  But ‘what if’s will get you nowhere.

Instead, I focus on what I can do. Being out of action so often through the years has forced me to stay in touch with my creative side; to stretch my imagination and find things to keep myself entertained when I haven’t been able to go out as much as I would like.  So I have dabbled in a few different things; some, like sewing and millinery, have stuck while others haven’t quite so much!  Basically I just love to make things.  I love making things so much that I recently decided to start a blog about it!

I took up Millinery two years ago when I tried out a short course at CAE (the Centre for Adult Education) run by Lynette Lim of Love Lotus Millinery.  Before the course was finished I had decided it was my new passion. My new friend Nikki and I signed up for an information session about a year-long Millinery course at a Melbourne fashion school to be taught by Serena Lindeman.   The course gave me the key to enter a world I had previously only glimpsed through the keyhole. Subsequent classes with Serena at her studio have helped me explore this world even further.

True Millinery is an art form and Milliners are artists.  They make wearable magic out of felt, straws, plastics, silks and fabrics and many, many other materials.  When it comes to millinery the only limit is imagination; even gravity can be defied (and frequently is!).  Milliners create jaw-dropping sculptural masterpieces, practical but beautiful everyday pieces, delicate flights of fancy that steal your breath away and everything imaginable in between.  Millinery is an art for those in touch with their imagination (Australian milliner Richard Nylon is a great example of this) and Australia is a fantastic place to be studying it – we have some of the best Milliners in the world and many are willing to share their skills with those who are eager to learn.

Millinery requires patience.  I thought that living with chronic illness had taught me patience but boy was I wrong!  Illness taught me a form of reluctant acceptance; patience is something quite different.  Hand blocking felt with scalding hot steam and stretching it down over the block again and again to get the perfect, even fit or blocking straw with squirts of sprayed water – making sure the grain is even and the shape is smooth, sculpting freehand and seeing an imagined shape come slowly to life in your hands, wiring a brim and then covering that wire, tooling each individual petal of a silk flower with heated irons and then assembling the flower petal by petal and hours of hand stitching – all brings a new meaning to the word ‘patience’.  And then there’s the muscle pain!

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Millinery also requires dedication – particularly when it comes to time and finances.  Once you begin to learn about hats you increasingly appreciate the work that goes into what you see around you and gain a better understanding of worth and quality.  Millinery materials don’t come cheaply; neither do the tools it takes to make a hat or the know-how; it all takes its toll on your wallet.  Hats take time to make, so much time – more time if they are made well and of course the more intricate the hat design the longer it takes to make.  Very quickly you see that charging $500+ for a well-crafted hat doesn’t seem so ridiculous after all.

Millinery also takes its toll on your hands, more so in the beginning, but then your hands get tough, just like your mind gets tough from its lessons of patience.  You learn to work through the pain, frustration and the countless stabs from needles and pins because you know that when you finish you will have made something beautiful that you can look at with pride (or never want to see again and gladly pass on to its new owner).

Learning Millinery has taught me a lot and brought so much joy to my life – and of course new friends!  I have met some lovely, creative and highly talented people through Millinery.  One of the other things I love about Millinery is there is always something new to discover; a new area of expertise, a new technique, a new material, a way of doing things you hadn’t thought of before and there are so many places to learn around Melbourne.  We are truly lucky here.

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You can find Claire’s blog here and her millinery website here.  Go say Hi!

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

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

Michelle Roger: All the Feelings

Michelle was the first blogger whose work I read that wrote as if she was living inside my own brain. I found her blog before I fully understood what was wrong with me and I remember devouring post after post until I had finished reading her entire site. It’s a big blog too, Michelle’s been writing for quite some time!  Her posts were funny, irreverant, authentic and informative. I laughed myself silly, I cried, I wondered and I thought about things. She wrote about the issues no-one else seemed to talk about.  She made me want to write myself. I am beyond honoured to have Michelle guest posting on my site today.  She’s my blogging hero.  Here she is discussing the importance of being able to express even the crappiest feelings. I think this post is really important.  It originally appeared over on Michelle’s blog here.

Meet My Peeps

I’ve had a bit of an unintentional blogging break of late. My mojo has been somewhat absent and my health not exactly stellar. Sometimes it’s difficult to keep hold of that happy place no matter how much you want to or how hard you try. No amount of positive thinking works and you end up just beating yourself up for somehow doing happy wrong.

I’ve noticed there has been a move in some corners of the ether to stop discussing the negative emotional aspects of illness and in my state of funk it’s really rubbed me the wrong way. I’ve found myself moving further away from various groups which seem more intent on providing more in the way of inspiration-at-all-costs, rather than a safe place to vent and seek support or treatment information.

I’m all for inspiration, but not at the expense of silencing the patient voice. Illness sucks. At times it is hard to find anything positive to cling to. It is scary. It is challenging. It makes you want to cry uncle and hide sobbing in the corner. There is nothing wrong with these feelings. But there is something wrong with stifling those who voice those feelings or judging those who are in those dark places.

I understand not wanting to dwell in those places. That is not healthy. But ignoring them or pretending they don’t exist is even more detrimental. Already we judge ourselves more harshly than anyone else possibly could. But to hear that we are somehow doing illness wrong, is another level of guilt to bear.

Admitting these emotions is already fraught with stigma. Inspiration porn tells us that we should all be fighting the good fight. That we should face the world with a smile and a Can-Do attitude. That the sun will come out tomorrow. Turn that frown upside down. All you need is a positive attitude. We are beaten over the head with the permanently perky group-think that has been popularised by pop-psychology and smiling, big haired, over-tanned pseudo-celebrities on the covers of shelf after shelf of self-help books.

Say it’s tough and you might as well have said, “on my weekends I enjoy sacrificing small furry kittens to Beelzebub”. That is where the crazy lives. Not in the patients experiencing real emotions from living in a prolonged stressful situation. It takes courage to say it’s not okay in the face of the overwhelming positive brigade.

Say 'it's tough' and you might as well(1)

Sometimes what you need is one safe place to say it’s not okay. That you are scared. That it is all getting too hard. This is where a true support group can come to the fore. A healthy support group is a reflection of the different aspects of illness, part inspiration, part support, part venting, part information etc. We need a place to voice those thoughts and feelings free of judgement. To simply hear that someone else understands and has been there. We don’t need solutions. We don’t need to be told that we should stop being so negative. That we shouldn’t share. That we should always try to find the positive. Some days you simply can’t, AND THAT’S OKAY. We can support one another without forcing our own beliefs on others. Without expecting others to be in the exact same head space as we are.

In psychology there is a concept known as the Theory of Mind. In a nutshell, this theory suggests that we can attribute beliefs, emotions, states of mind etc to ourselves and others, and understand that other people may have beliefs, emotions and needs that are different to our own. It is this theory that allows us to have empathy for others. It means that even though others may be in a different emotional place to ourselves, we can still provide support and care for them. This theory or it’s lack, can make or break a support group.

We can support one another with a long message or even a simple emoticon, a heart or a sending of hugs. Because sometimes that is all that is needed, especially when your heart and mind are already cluttered and overwhelmed. That lets another patient know they are not alone. It lets them know they can vent and then, that they can breathe.

Positivity has it’s place. I am a positive person by nature. But it cannot be sustained 24/7 and forcing that is an added burden patients don’t need. We have a range of emotions for a reason and each have their place. We are all in different places in this illness journey and we can’t expect that everyone will be as sanguine as we are in a particular moment.

This past week I felt fear. Something I haven’t experienced in a long time. My bradycardia was the worst it’s been in….well, to be honest it was probably the worst it has ever been. I experienced all the crazy scary thoughts. I realised there was a chance that my heart could stop. That my kids could come home to find me. I was scared to be alone. Later that night when my heart rate had stabalised somewhat I realised I was over it. Really over it. I’ve been sick a long time. I’ve had enough.

There is no shame in airing those thoughts. They were a natural response to a damn scary situation. They are thoughts that I know others have had. Airing them doesn’t scare others. Or if it does it opens up an opportunity for more discussion and support. It allows others who have been sick for a longer time to share their experience. It means that should other patients have those thoughts at some point they know they are not alone or crazy. If they see support on a thread from other patients they learn ways to deal with the messy emotions that crop up with living with a complex chronic illness. They also see that we make it through. That no matter how tough it gets, there is a point where it gets better again. That today I am planning art projects and laughing at YouTube videos. The worry of last week is still there, but it is balanced against the good and put in it’s place. Today I can laugh and smile again. I made it through. Today’s emotion losses much of it’s salience if it’s not seen alongside the darkness of last week.

Living with illness is a crazy ride, filled with complex emotions and situations. We face challenges to our sense of self, our relationships, our entire way of living. There are highs and lows and even the most positive people can find themselves dealing with sadness, fear, guilt and other negative emotions at times. Pretending those times don’t exist or minimising another’s experience does a disservice to ourselves and to our fellow patients.

Shame and fear thrive in silence. And that’s one burden we can change.

-Michelle

I should add I am a strong supporter of seeking professional help for dealing with this aspect of chronic illness. For some, psychologists or counsellors, for others clergy, or professional support lines. Support groups fill a very valuable place in dealing with illness, but sometimes more is needed. There is no shame in seeking help for the emotional aspects of dealing with illness, just as you would seek out a cardiologist to help with heart rate issues or a neurologist for small fibre neuropathy, a psychologist can help with the emotional roller-coaster that is chronic illness.

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?

Petits ‘fours’

I’m joining in a blog post idea suggested by my blogging friends Clare and Nettie. It’s a series of questions with answers of four. I’d love to hear your petits-fours too!  Just copy and paste the questions into the comments field, I’d like to get to know you better and this is a fun and easy way!  In-four-mation makes the world go round.  Bahaha!

Four names that people call me, other than my real name.

Rachiepoo
Ragey
Fat Foo
Mumma

Four jobs I have had (not counting current jobs)

Cut Price Deli chick
IT help desk
Telephone marketer
(yep.  be kind to those poor souls, they’d rather not be calling you, either)
A blue body-painted extra in a promotional event.

Four movies I have watched more than once

Toy Story
The Piano
Whale Rider
We bought a Zoo

Four books I’d recommend

Tuesdays with Morrie by Mitch Albom
North of Normal by Cea Person
Purple Hibiscus (or any of Chimamanda Ngoze Adichie’s books)
The Good Women of China by Xinran

Four places I’ve lived

Christchurch; enduring memories are icy puddles on winter mornings and frost on my woollen school socks.  I had a pink school uniform, a tree hut in the willow tree. And I met two lasting friends, Rachel.G and Dana.

Papua New Guinea; land of Islands and Mountains, sunshine and breeze. This country is a big part of who I am today. All the memories fill my heart and mind and have shaped my personality.

Melbourne; in a boarding house, far far from home.  It was in a huge city, yet my world there was very small.

Sydney; my first ‘grown up’ home, a little flat with gingham kitchen curtains.  I loved keeping house and making everything just so. But arranging cushions does not a marriage make!  Thankfully, happy endings have been had by all who lived in that little Hornsby nest.

Four places I have been

China (loved the alleyway markets in Tian Jin)
USA (Colorado is my favourite state so far)
Germany (au-pair to a family in Munich)
England (where I met rellies who made me appreciate the marvel of genes)

Four places I would rather be right now

There’s no where I would rather be, but if I HAD to be somewhere else… and there were no limitations hefted on me by reality…

I’d be at Vista Verde in Colorado, having another magical white Christmas.  But only if everyone I love could be there too (yes, that includes you Nettie, and all the Pipsters, my dear friends, my girls from the Dysautonomia community and my lovely readers)!  We’d book out the whole ranch and build gingerbread houses and sing carols with the cowboys and take sleigh rides, or ride horses through the snow and drink mulled wine! There would be hot spas looking out over the snow covered Lodge, steaming mugs of hot chocolate, Cholly’s homebaked cookies, cedar scented cabins, snow tubing and twinkling trees lighting the snow-ploughed path home each night! Ohhhh!  Lucky lucky people that are doing just that right now.

(here’s some photos from when we did it for real)

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I’d be in Darwin: so I could see the precious bump that is going to be my little nephew next year, and hug his much-missed parents this Christmas; see their new house and get a fix for what their world looks like.  I’ve only seen it in my imagination and I want to know what it feels like in that part of the world.

I’d be in Sydney: so I could wish my bro and his beautiful wife and kids a Merry Christmas in person, which would involve my arms around all of them, lots of loud and enthusiastic singing and lots of floating in the pool, ‘cause Sydney, like Darwin, is too HOT!

I’d be in Gisborne: so I could marvel anew at how giant my nephews are becoming, meet the new puppy, chat and reminisce about my Mum with my sister. Dose up on those sisterly cups of tea, and wish them all a beautiful Christmas too.

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Four things I don’t eat

offal
strange parts of animals
kimchi
pork buns (after an experience once on a ship that I cannot shake from my amygdyla)

Four of my favourite foods

(I had to put these into categories, because I couldn’t stop at four!)

Pavlova, Chocolate, Cake, Cinnamon Rolls
Fresh garden veggies; asparagus, snow peas, capsicum, grilled artichokes
Venison, lamb, crayfish and salmon
Fresh still-warm white bread (I know.  Evil.  Yet delicious!)

Four TV shows that I watch

Game of Thrones
Downton Abbey
Graham Norton
Anything on the Living Channel

Four things I am looking forward to this year (and into 2015)

Finally trialling treatment and hopefully having favourable results
Hearing back about a study opportunity… and hopefully, DOING it!
Spending heavenly horse time with my daughter’s new pony (shhh!  still a secret from her!)
Writing more…

 

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Four things I am always saying

“WHO was the last person in the toilet?!”
“Try again, using calm words…”
“…it’s a dysfunction of the autonomic nervous system, the part of our bodies that controls all the automatic functions”
“FFS” (it’s swearing, so I won’t translate)

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Come on!  Tell me your fours…

(copy and paste this into your comment)
Four namesFour jobs
Four movies
Four books
Four places lived
Four places been
Four places I’d rather be
Four foods I don’t eat
Four foods I love
Four TV shows
Four things I’m looking forward to this year
Four things I say