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.

Across the Ditch

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

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

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

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

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

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

I promise to always write with authenticity.

I promise to use my words carefully.

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

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

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

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

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

_____________________________________________________________

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

 

Tasman_Sea
Source: Wikipedia

 

 

Making Peace : Days Like These

I guess we all feel a bit awkward, thrust into a new group of people.  I think it is part of the human condition.  I went to so many schools when I was growing up that I did some crazy things trying to get people to notice me, to see who I was, beyond the be-spectacled, nerdy hand-raiser.  I was those things, but I was much more besides. I wanted them to get to know me faster, I wanted to find my kind of people and put myself out of my social purgatory misery.  Friends make the world go round.

I have a few dearly treasured friends these days.  People who are with me in person.  Supportive, wonderful women who are strong and wise and warm and funny.  Girls who ‘get me’.  I hope to have those friendships forever.

And then there are my online friends. I never thought I would have online friends. I didn’t know how to make friends online. But the people I have met through my support group for Dysautonomia and the people I have met through my blogging course, I now count among my best friends. I have been welcomed with open arms by people who ‘get me’. When a dear online friend died this year, it opened up a gaping wound of grief that has not closed.  It’s hard to understand how that is possible, but it is.  I’ve ‘met’ people who have changed my world from lonely to lovely. Warm fuzzy loveliness.  Connection instead of isolation.  These friendships are as real as those with people I can see and touch.

It is interesting to think that we have all met because of our struggles and shared pursuits. We reach out to each other from our solitude and we are no longer alone.  There is a deep resource of empathetic, beautiful souls out there; sharing experiences and caring for each other across the digital desert.  Beautiful people.  One day I would love to meet each one of them and wrap my arms around them in person.  Hello out there my friends.  You mean a lot to me.

I have a new group of friends, too.  A group that is just starting to build and grow.  People who read my words here.  I am so glad you are here. Everyone of us has difficulties we face and my hope is that no matter what yours are, you’ll find empathy here, with me.  I look forward to getting to know you, don’t be shy, make comments and I will respond, I promise.

Today I was listening to Janis Ian, one of the world’s most talented singer songwriters.  She wrote that song ‘At Seventeen’.  But she also sang this song.  I’d like to dedicate it today to my online friends.  Here’s to you out there, because even on ‘days like these’… you help me to make my peace.  I hope that I can help you make yours, too.

How are you?

If I met you, I’d smile.  
Maybe you’d ask me how I am.  And my smile might wobble a little.  It’s not a question I can easily answer.  I don’t want to lie, but if I told you the truth of how I am, you might do that little sliding sideways step and make a mental note not to get stuck next to me next time. So I’d say
“…fine, thanks.  How are YOU?” and we would talk about that instead.

But I think it might be time to break out the real answer.
“I’m not doing so well”.  Thanks for asking!

My name is Rachel and I have a neurological disorder that is a dysfunction of the autonomic nervous system.  That means, all the functions of the body that are automatic.  Breathing, Heart-beating, Blood Pressure, Temperature regulation, Digestion, Bladder and Bowel functions.  Just a few of the things that make our bodies efficient places to live.  In my body, all of them are affected.  I have a pacemaker to assist my heart and medications to help with the rest.  They are the ambulance at the bottom of my cliff. But when you look at me, you can’t see how I am falling.  They call my illness an ‘Invisible Illness’.  It isn’t easily apparent. On my worst days, I’m in the emergency department, or here, in my bed.  Dealing with all manner of broken body problems. I might be tapping away on my keyboard. Connecting with the world in the best way I can, out of sight.  But on my good days, when I am visible, I might be beside you, chatting about how you are, and smiling. Looking fine.

There is no cure for Dysautonomia.  My doctors haven’t found a cause, but for some, a cause may be found and a treatment begin.  For the majority of us, ‘treatment’ means symptom management. A regime of medications and interventions; it is a ride on a runaway roller coaster in an abandoned theme park.  Frightening, unpredictable, overwhelming.  Autonomic dysfunction like mine is more commonly seen in late stage Parkinson’s or Multiple Sclerosis, but without a primary cause it is rare. There are few of us in Australia and New Zealand, but we are resourceful!  We have found each other on the internet and we work together to find information, resources and hope. I cannot imagine how it must have been for people with rare diseases before the internet.  It makes me want to cry imagining how very isolated they must have been.  I am so grateful for my finger tapping friends all over the world.  Shouting a two dimensional hello into the ether.  Arms reaching far across the digital divide with comfort and solidarity.

So, How am I?  Really?
So frustrated, so scared.  See, I have two kids and they are still so little.  Zed is six and Bee is nine.  I linger at bed times, holding them in my arms, always for just a bit longer.  My lips against the hair on the tippy top of a warm head, my cheeks pressed up against the moist stamp of little hands. My thoughts, always on what the future may hold for them.  My heart in my mouth and my own hands grasping at the time slipping right through them.  I want to be the mum who walks beside her grown kids, head up high, laughing and joking. Not the incontinent invalid, too spent and struggling to keep pace with the conversation.

I’m heartbroken, so sorry.  See, I have this husband.  He’s the best man I have ever met, and I got to marry him.  He’s tall, and lovely and practical and smart.  When we argue, we make up.  When we struggle, we push through.  When we love, well, there is no song, no poem, no flower that could help you understand.  It’s friendship to the power of two.  It’s trust in the face of despair. It’s warm and good. It took me so long to find him and then, Dysautonomia found me.  How is that fair?  It breaks my heart that he has to live my diagnosis with me.  My husband; my friend.  A commitment in sickness, but where is the health? I want to be the wife he can run away with, when our child-rearing is done. The wife he can play with; he’ll chase and I’ll run.

I’m lost, so empty.  See, I had a great career.  I was a teacher, and I loved it.  I worked with kids who had exceptional ability.  My last job was teaching a small group of gifted child writers. And I still think about every child I have ever taught.  I still yearn for a classroom of my own and a chance to engage in those exchanges when learning is the light illuminating our world. Where sparks fly and inspirations blaze.  Where questions and commentary, connections and community fill me with hope for the future of our world.  I miss being their teacher.  I miss seeing them shine and watching their possibilities unfold.  I want to be the one lighting the bonfire, I have so much tinder for the fire. But now, I just teach myself. Patience.  Every day.  I grit my teeth and get through the next thing, I swallow my shame about what my body won’t do.

But I’m really glad you asked how I am.  Because even though I am all of those things I write about above… I am also amazed, so genuinely gobsmacked by this life. I have lost so many of the things that meant so much to me.  I had very specific plans for my life, for all the things that I thought I should achieve.  But I am finding out something quite extraordinary.
I actually have, SO much.

I have everything that matters.  

I have love.  I have a purpose.  I have words (and I intend to use them!)  Being sick is not a picnic.  But it is a bit of a fast track to finding your true self.  And in spite of everything, I am back to the basics of Rach. For the first time in my forty years of life, I like me. I have so much more insight and empathy than I could ever have had before.  I am writing and connecting.  I am meeting ‘my people’, from right where I am.  In the comfortable discomfort of the present situation.  From my bed.  From a place of real true, me. I feel all these sadnesses, all the fear and loss and frustration.  But I also feel a peculiar kind of free. 
I feel like I have found: me.

I turn and I smile, at you.

Because, actually, I am fine, thanks.
But truly, how are you?

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