Ora; to survive, escape

*Warning.  Trigger material, suicide, depression, anxiety.

black silhouette of girl in boat
“You’ll be the boat and I’ll be the sea. Won’t you come with me?” -Lisa Hannigan (lyrics and artwork from Lisa’s music video; Ora).

Here is a definition from the Maori Dictionary

1. (verb) to be alive, well, safe, cured, recovered, healthy, fit, healed.
2. (verb) to survive, escape.
3. (verb) to recover, revive.

In New Zealand, “Kia Ora” is our Te Reo Maori greeting. It is used to say hello, wish good luck, or acknowledge someone’s presence.  “Hauora” is the life breath of wellbeing. When we press noses, or ‘hongi’ we are sharing the Hau of one another. The concept of Ora is a beautiful one. I have been seeking Ora my whole life.  Desperately when I was physically ill, and again when I was mentally ill. Just now  it feels like every definition of this word fits my feeling of Ora.

Today I heard a song that made me shiver with recognition. It is called, simply, Ora.  It is composed and sung by Lisa Hannigan.  I don’t know if Lisa Hannigan has used this word the way we know it in NZ, but I liked the synergy. So today, I’m bringing the two together. You can listen to it below.

To me, this song is a siren song. It is an echo of the dangerous thoughts in my quiet mind that told me I should take my life, that it could be simple, that I owed it to my family.  I don’t think Lisa’s lyrics literally mean that, but they sounded like the false comfort of the thoughts I had.

“Bleach me to silver
Under the moon
Pulling the water round
And me to you

I’m going home”

Those type of thoughts only happened when I was not in my right mind.

I could easily have not recognised them for what they were.  They seemed so reasonable, so calm. So devastatingly logical. But my analytical mind would not let go of me.  It asked me questions;

Why would you fight for survival and then throw your whole life away?
(I wouldn’t).

How could you leave them, those treasures of your heart, your beautiful ones?
(I don’t want to, I just want to leave the pain, free them of me).

Do you want your babies to grieve their mother as you grieve yours, only flooded forever with the acid sting that it was your choice to die?  (NO!)

Can you wait a little longer, wait and see if this torment, too, shall pass?
(I don’t think so, but I will).

Why are you thinking these thoughts, Rachel? What has changed?
My meds!

I’ve written before about my CRPS (Complex Regional Pain Syndrome), arising from Gynaecological surgeries and ongoing lady issues.  It’s been a blow, to have fought to get well and still have that millstone around my neck. I am going in for another surgery in three weeks time. I hate Gynae surgery. I hate Gynae pain. I hate taking medicines and having to go to the hospital so frequently for outpatient clinics. I know I am lucky to have the service available; I am so fortunate to have wonderful experts who can help me. I’m currently under the care of an excellent Gynaecological Surgeon, the Pain Team, a Health Psychologist, a Pelvic Physio and the Mental Health Unit. But oh I am weary of hospital crap.

A few months ago, I disappeared from Facebook and took steps to make my life simpler. I left online patient groups, I stopped seeing more than my immediate family and closest friends. I was hanging on by my fingernails, hating myself and my problems, gritting my teeth and pushing through. I kept telling myself we all go through lows. But then the thoughts began. Nasty, quiet, sinister little suggestions. They felt like truth.

I asked my pain doctor about my meds. He thought it was not likely that they were causing my shift in thinking. We pushed on. I was referred to a psychiatrist at the Mental Health Unit to see if she could find something to help. She suggested I increase one of my meds by a significant amount.  At higher doses it not only helps people with pain, but also with anxiety, a frequent visitor to my state of mind. She listed the side effects, which sounded almost exactly like the Dysautonomic nightmare years I have just escaped from.
Oh no no no no no! The voiceless protests clamoured inside my head.

I left her rooms, got in my car and stared at the world outside my window. I put my head against the steering wheel and sobbed. And then my analytical mind began to yell at me.
Rachel! Something is wrong!  You know it is!
Take charge, be your own advocate again. Sort this shit out!

I called my hubster and we had a bit of crisis meeting, right there on the phone. We agreed that I would call my pain doctor and wean myself off my meds, one at a time and see if the suicidal thoughts abated.  Inside my cells, I think I already knew which one.  I started with that. Within two weeks, I was calmer.  Within three, the thoughts had stopped. I was back in my right mind.  In pain again, but mentally sound.

I resolved to aim for a med-free regime. To see if walking every day might help to naturally boost my seratonin, might help me cope. The Pain Team agreed, under the proviso that we stay in contact if things became unmanageable.  And here I am.  This morning I woke up and took no pills. I went for a walk. I looked at the view. I hummed a happy tune. I came home and drank a coffee, found some sunshine and listened to music. I heard Lisa’s song. And I thought that I should talk about how sweet and sensible that siren song of my own seemed. I should warn people to be wary of dangerous thoughts. They might sound oh-so-kind but they are wolves in sheep’s clothing.

If your thinking EVER turns in the direction of suicide, or suicide plans.  PLEASE GET HELP. Your families and dear ones would NEVER recover from the loss of you by your own hand. It would never be okay, or better, or a relief.  It would never be a good solution.  Getting help is better. Listening to wise people is better. Trusting that this too, shall pass, is better.

If someone you love is acting differently, is struggling to find joy in life, get help for them. You can only help if they let you, but please try.

Some medications do bad things to people in weird ways, ways not intended by the manufacturer or understood by the doctors. Keep telling people. Try something different. Be aware of side effects.  Call for help!
* never cease taking a drug without medical advice

I am so glad I am here and get to love and write and hum and walk and dream and breathe and be!

X ~Rach

Hope Floats

_...just give hope a chance to float up.

There’s always something happening.  Something threatening to pull us under.

Sometimes it is big enough or politically scary enough to warrant getting onto our news service. Where we can watch it through our shiny big screens and then turn away, horrified.  Soundbytes of a few seconds aimed at providing the juiciest details, so that even children can grasp it all. But we can carry on breathing air, scented with the pine Christmas tree; we get up and move into another room.  Guiltily move our thumbs across to the ‘off’ button.  Get on with our pre-Christmas to do lists.

It’s overwhelming to think of the things that are always going on, somewhere in our world. When I contemplate the number of human beings that are being tortured, raped, imprisoned, separated forever from their loved ones, killed. I don’t want to stay with those thoughts.  I don’t want to consider the reality of all that bad news.  My mother heart feels it personally.  Knows, that for the people inside those news stories, it won’t finish in time for the next headline. Their stories will go on to affect them and their families for generations. It’s a big and painful reality. Small wonder we choose not to watch.  How fortunate we are that we get to choose not to, to postpone considering these harsh realities… until later, when we don’t have the small ones beside us, asking questions from those beautiful, wide-eyed faces.  Not yet.  I don’t want to explain all that to them yet.

In my own little world, I cling to the presence of a strange hope that is always there, tugging me upward.  It is such a buoyant human trait. It is an odd thing, when we are all mortal, that we have developed this protection mechanism from the brutal truth.  We are all subject to tragedy, suffering, loss.  At some point in our lives, our exemption cards will run out and we will be visited by human heartache.  It’s a guarantee. It might not reach the news. It might not be considered newsworthy. But that moment might carry the worth of our entire human experience, or those of our loved ones. In that moment when suffering comes to visit, the worthiness of our own story will be carried by us, or by our loved ones.  In the fragility of our fragment of mortality.

I am always staggered by how hope renews itself, in the face of terrible odds. I remember, that movie with Harry Connick Junior and Sandra Bullock …not the storyline, but the title… ‘Hope Floats’, it has always stayed with me, that title.  How true it is.  We can be sinking in the quagmire, far from the light, drowning in despair.  We can be pulled under by the terrible things that have been hitting the headlines.  The realities of life with a progressive illness. The sadnesses and tragedies experienced by friends in our close circles this year, and the wider circles in our community, our country, our world.  We can think about all those difficult things, and when we feel ourselves going under, we can grab hold of our flotation device and float back up to the surface.  Our lungs fill with fresh air, our faces turning to the sunlight. We can believe that it is possible, all over again.

It’s not perfect.  But sometimes I reckon hope might just be the best mechanism our human race has as we hurtle through time on this little blue planet. Hope is bigger than love, because it comes in when we love is lost to us. Hope is bigger than peace, because it makes it possible for wars to end.  Hope is bigger than understanding, because we can’t always understand why people hurt people. Why people get sick.  Why suffering happens. Hope keeps us afloat when our own humanity pulls us down into the depths. Peace, love and understanding are the tenets for a brighter future. But we will never reach them if we don’t allow ourselves to be buoyed up with hope.

Hang on to hope.  Give it a chance. Let it pull you up from the depths.

Blue

Feeling blue has been big in the online world lately. People are starting to talk about depression and anxiety, about mental health in general. People are having conversations that may in fact make a big difference to our society. For our terrible suicide rates.   ‘Feeling blue’ can be a twee kind of way to say that someone is sad, low, down or depressed. I’m not going to write about feeling blue today. If you want to read a really great post about that, head here, or here.

Sometimes, in my experience of life with a chronic (invisible)  illness, I think it might be useful if I was actually blue.  If I was a little blue creature like the ones in this Eiffel 65 clip (sorry, but I have had this song stuck in my head), no one would expect me to do the things that a big grown healthy human might be expected to do. They would see at first glance that I am different.  They’d ask me all about it, they’d wonder about my species and scientists might want to study how my body works.  I may be weird, but I am no little blue man.  There will have to be other ways.

October is Dysautonomia Awareness month.

Blue is the colour of our awareness campaign.  It’s a pretty blue.  Although, there is some political disagreement currently, about our ‘exact’ blue…  Apparently the prostate awareness colour is deep blue (all this awareness campaigning can be confusing). Dysautonomia International’s Awareness campaign this year is ‘making noise for turquoise’… but longer standing groups have been using a mid blue for quite a few years.  So I have decided to embrace every blue hue this year.  Brilliant blues. I don’t think we need to have a blue about it.  Let’s just be blue.

12(3)

So, how?  I’m not the sort of girl who could pull off a body painting situation, someone might mistake me for a giant jellyfish and roll me back into the ocean.  Nail polish is great, you know?  But a bit last year.  I’ll still be having blue nails for Dysautonomia Awareness month, but Michelle from Living with Bob had a brilliant idea. She told me she’s doing something kind of radical for October.
Inspiring.

I’m going to kind of, sort of …do what she is doing (it’s a surprise), but to a much lesser extent, ‘cause I am a wuss.

This month, to get people asking and give me an avenue for talking about it, I’m going blue too.  I’ll take some pictures tomorrow, as it happens!  I’m also going to wear as much blue as I can, all month.  I am going to pull out last years’ nail polish.  And I’m going to instagram a blue photo every day.  #dysautonomiachallenge   Want to join in?

Cos I’m blue, dab a dee dab a dah.  
I got dysauto-nomi-a…

I am trying not to feel like a big blue failure though.  October is our awareness month. I’ve been thinking about it for months, I even had a friend, the very talented Katie Clausen, do a little drawing for me so I could make t-shirts, but I haven’t even got that together. I bought bracelets to sell for a fundraiser, and I can’t find them anywhere.  Boo.

Screen Shot 2014-09-30 at 5.21.26 pm

For now, I’m going blue!

Awareness month will need to evolve in its own fashion here on the Chronic-ills of Rach. 
Will you be going blue, too?

 

TA DA!  Here’s a pic of my new, blue, do.

Screen Shot 2014-10-01 at 1.28.47 pm

The Lament for the Numb

Listen to Dave Dobbyn singing his Lament for the Numb. 

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

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

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

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

 

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

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

 

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

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

 

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

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

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

 

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

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

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

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

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

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

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

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

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


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

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

Thanks Pia, for your wonderful call to action.