What if today you chose kindness?

(Frida Kahlo, Self -Portrait with Thorn Necklace and Hummingbird, 1940)

What if you were kind to one person today?

What if that person was you?

What if you said 

I'm enough

What if you allowed yourself to believe 

That perfection is but a lie

And imperfection the masterpiece

That the things don't matter

That the what if's

And the if only's

Are the sleight of hand we use to hide the truth

Lies are told

By the empty sages who howl at the door

The musts

The shoulds

False prophets yell from street corners 

To tell you the wrongs

The failings

The disappointment

The bruises and the hurts

Delivered and delivering.

Empty words 

Bleat incessantly

Beat you down into submission

Ease in agreement

False beauty with talons

Acquiesce and be torn apart

Momentarily placated

Before

The goal posts move

And

Conflicting commands

Come from new corners.

Close your ears to sirens

Bind them

And fill them with daisies

Hold the silence

Listen for the first whisper of truth

Let it grow

The rhythm of the heart writes on the stone

Slow and steady

While the world around ebbs and flows

While beasts scream and claw

And clamber to cover and obscure

It continues below. 

Waiting to be recognised

Waiting to be found

Feel

Vibration and resonance

Know 

That it belongs

The song plays

While the mosquitos buzz

Hear the breeze 

Gentle caresses on leaves above

Eucalyptus to cleanse

Hints of rosemary 

For remembrance and clarity

Scent and sound.

Wipe the oils on your brow

And wrap the leaves round your heart. 

Focus on the melody

Let the words rise

Enough 

Worthy

Okay

Believe.

What if today you chose kindness?

Michelle

Lost words: 30 Minute Poetry

Saturday was a bad day. A day where I had an unexpected and very sudden flare that left me vague, slurring and having to be carried into the house. That stole my words. The frustration that the words which are my world, that have always been my word are so distant and so hard to access. Even today four days later I am struggling. It's a deep mental exhaustion, on top of the physical. I can feel it in my bones, in the very fibres of my body and spirit. I know it'll end. That I'll come around again. Just the post flare lag is longer now. Everything is slowed, my muscles, my brain, my recovery. A snails pace to taunt my impatient self.

I'm losing my words again.

Every time I have a flare.

Something in my brain goes silent.

Or dies.

Underfed. Partially fed.

Another brain cell lost to poor blood flow.

And exhaustion.

Bone weary exhaustion.

I know where they are stored.

I can visualise it still.

But I can't recall the name
that part of the brain that stores them.

Vague images of pathways 

I drew in postgrad float before me.
But there is no clarity to the image.
No meaning.
No understanding.

I have held it in my hands.

I can close my eyes and clearly remember
tracing the sulci with my gloved finger.

The feel and weight of the plasticised brain.

The smell of the preservatives in the anatomy lab.

The muffled silence of the room.

A real brain.

Donated.

Honoured and respected.

A gift.
A miracle and mystery.

A tangible aid to the acquiring of knowledge.

That was once so familiar.

But the specifics are lost again.

I can see it.

I can feel it.

But I cannot name it.

I see the words before me.
Indistinct and shimmering.

And on the edges of my vision

Swirling and darting.

Try to focus and they move
taking up residence in the distance
 or on the periphery once more.

Like water, they trickle through the fingers of understanding.

And I am left at a loss yet again.

I know what I want to say.

But I can't follow my own train of thought.

I know the phrase but it is jumbled.

Bits replaced by words that sound the same.

That create the same shape on the page.

But are meaningless in the context.

I talk around the word.

Around the thought.

I gesture and I hesitate.

I slur and I um.

Thing, the thing.

You know the thing.

The description of the word compromised
by the very lack of words to describe.

Pauses. Hesitation. Silence and confusion.

Work. It's hard work.

The expenditure exhausting.

Words trickle slowly.

By the time the sentence is formed it's initial intent is lost.

The sentences and thoughts that came before, also lost

To a mind unable to focus.

The thoughts form.

Slowly swirling.

Almost coalescing only to dissolve before me.

A fog of curves, straight lines and sharp corners.

Letters rotating, morphing, joining
and breaking apart.

A word, a sound,
the interruption of competing thoughts,
or bodily processes.

The least shiniest of objects
and
the moment of coherence is lost as if it never existed.

The time from thought to word,
spoken or written.

A second,
a minute,
it is all too much.

And the words are lost.

Words which are me.

Words which are my link to the world.

The vague hope that they'll return.

That despite everything
I'll be able to transfer my mind to the page.

Once more.

That concentration will return.

That organisation will return.

That I will return.

I will see me.

I will write me.

I will read me.

I will share me.

I will be me.

I will.

Michelle

I've written about persistent communication difficulties before in Speak Words Hard But the poem above is more a description of the experience of losing the words in the recovery phase after a flare.

Pink blossoms and buzzing bees: 30 Minute Poetry

(It really feels like Spring when the blossoms start appearing.)

I hit a rough patch, well more than one really. For a while it's been rough patch, after rough patch. You can only soldier on for so long when the rough is all you have, day after day for months without end. A post or three back I mentioned how I was at that point. You know the one. The one where it's just enough. Where what you could deal with yesterday, is simply too much today. And in the midst of that fog of struggle and wanting to build a pillow fort and simply disappear from the world for a while. When rough textures and sharp edges are all there are as far as they eye can see. Lovely people both here on the blog and over on FB reached out. Messages, lovely comments, silly memes and photos to make me laugh, songs to lift or just because. And it's hard to explain how much they mean. That people you've never met in the flesh, care. And not only care, but take their limited energy to tell you they care. And suddenly you find yourself emerging from your dark place and making inroads back into the world. Because there are others who have your back and offer their shoulders without expectation or caveats. So I wanted to say thank you to everyone for pulling me out of my hole to see the world again. Spring in the world around me and Spring in my spirit to match.

This one is my thank you to you all. xx

Thank you for the wind

The gentle caress on my cheek

as I sit eyes closed on the chair in the corner of my yard

Cool and invigorating

Cleansing and revitalising

The breath of life

The breath of love

The breath that joins us all

Thank you for the birds

That flit and soar

Shadows racing across the ground

Flashes of colour in the sky

That sing of love and joy

Joy for the sun

Joy for the small berries emerging on the branches

And the nectar in the tiny blooms

Joy for the myriad of small insects that emerge at the first hint of warmth and renewal.

Thank you for the budding leaves

The tiny bunches with vibrant red edges

slowly unfolding with each added ray of sun.

A tight bump on the sides of stark branches

soon one, then two, then three, are seen fluttering in the breeze

Chaperoned by light pink blossoms and buzzing bees.

The eye once attuned to their presence can't help but see them at every turn

Thank you for the sun

That warms my face

And winds it's way into my blood

To chase away the cold and heat the heart

To uncurl the spirit from it's hiding place

To stretch out to the world around

And feel it all

Familiar and new bound together in joy.

Thank you for the moon

Rising in the east from crescent to full

shining just enough to illuminate the world

To drain the colour but light the way

To show the shadows of the life of day

The outline of the trees, the swings across the street, and the chairs in the yard.

Echos of the day passed, the day soon to be.

Thank you for the stars

Strewn across the sky by a casual hand

Beauty in their disdain for order and regimental adherence.

Points of light in the darkness

To be spied when lying in the dark places

Look up and focus

On one just one.

Claim it as your own to shine for you

But to be shared with all.

Thank you for helping me see

Thank you for making me feel

Thank you.

Michelle

Now to sit out back and enjoy and appreciate a bit of it on this lovely Spring day.

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,600, keep donating and hopefully we can reach $10,000.

Let the ether take it all: 30 Minute Poetry

Yesterday was a rough day. Even drugged up I was curled up ball of pain and nausea on the sheets. Another social event fell through and Mr Grumpy attended alone. I tried. I planned. I got up early and took even more pills. And still it wasn't enough. I can push and I can plan and I can still be defeated. A can do attitude just doesn't cut it on days like that. So I lay home alone in our bedroom exhausted and in pain unable to function and hating that I had let him down again [looking back at this it feels strange as I don't feel this way anymore, but it was such a strong internal dialogue when I was worn down by unrelenting severe pain. Mr Grumpy has always been supportive and never made me feel like that, it was just me beating up on me.] Some days I can take it and accept that this is simply how it is at the moment. And some days I spend my day in tears of  pain, frustration and self-recrimination until the drugs finally kick in and let me sleep. And days like that I put pen to paper. To let it all out. To cauterise the wound. And keep going. 

Write out your pain. 

Let the ink pull the poison from your veins.

Let it draw the hurt

And claim the burden.

Scratch the page

Tear the fibres

Break the nib.

Get it out

Get it out

Get it out.

Watch the ink flow

Watch the pain swirl

Black liquid

Absorbing all.

Watch it conquer the page.

Printed lines and the hurried script alike.

Watch the white page disappear.

Watch as it soaks up the bile and anger.

The fear and pain.

The pain of a malfunctioning body

Remorseless and enduring.

The pain of a bruised soul

Tired of the fight without end

With the self.

A body intent on tearing itself apart.

Pain in letters.

In spilled ink.

Every letter, every line.

A song of wounds, raw and festering.

Sharp edges and elegant swirls.

Jagged, angry script pouring across the page.

Pouring from your veins.

Let the dam walls break

Let the torrent free.

Trace the letters

Again and again.

Harder and harder.

Make them stick.
Make them shout
Make them scream.
Make them the vessel.
For all that you bear. 

Let the spell be fulfilled

Let the ink be your blood.

Let it suck the pain from your soul

Let it take the sickness from your body.

Present your burden

And let it be taken.

Let the tears fall

Let them spill on cursive and print.

Let them blur the words

And wash away the pain.

Watch them soak the page

Watch them break down the fibres and the ink. 

Let it wash you clean

Let the ink work its magic

Let the ether take it all.

And when the ink is spent and the pen run dry

Let it fall from your hand

Onto the rubble of paper and ink before you.

Rest your weary head

And let your soul uncurl

Let the tension leave your body.

And sleep take you to dreams of sunlit rooms and the warm glow of peace.

Let the burden be lifted

If only for the now.

And line up your sheaves 

And line up your pens

For when the pain comes calling once more.

You will remember the spell.

Michelle

For those who prefer to listen to poetry than read, here's my audio of the same piece. 

Truth

(The Two Fridas, Frida Kahlo, 1939)

Illness is hard

It is messy

It beats you down

It makes you want to tear out your hair

and cry into your cornflakes.

It pulls you apart

and discards the parts without care.

Illness doesn't always get better

and it sometimes gets worse.

It isn't clear

or clean

 or cute.

Illness is pain

and vomit and crapping yourself until nothing is left.

Illness is lying on the floor of the toilet

confused and crying, and sore.

It's bodily fluids, selected and tested

and escaping at will.

It's tubes and infections.
It's being stripped bear and examined.

It's catheters and cannulas.

Pacemakers and pumps.

The blinking and beeping of machines

and the tortuously slow drip of the IV into the reservoir.

It's pills and potions and poisons.
It's silence and looks, and the hedging of bets.

Illness isn't a neat package of symptoms

diagnosis,

treatment,

and cure.

It's acknowledging a lack of knowledge

a lack of options

a lack of prognoses.

A hidden path

which may never get clearer.

Illness challenges who you are

It destroys and remakes, over

and over and over again.

Illness lets you believe you've found your even keel

Only to throw a cyclone in your path once more.

It's belief

and disbelief.

Both our own and of others.

Hope and disappointment

a tangle of knots and frayed parts.

Systems, people, bodies 

betrayed and saved in a mire of ambiguity.

Illness isn't heroic or brave or epiphanies and illumination

Illness isn't good or bad

it just is.

But people

people are different.

People are scared and lost and defeated

and strong and resilient and hopeful

all at the same time.

Contradictory and confusing.

They cry and they weep.

They rage and they bellow

They laugh and they mock
They are fallible and imperfect

And people keep going time after time

after time

Sometimes they are brave

Sometimes there is no other choice

And sometimes it is the face they show when inside they are crumbling.

People hold it together

barely

and fully

and somewhere in between.

There is no one way.

No right way.

Illness is unique and personal

and messy and complicated

Just like the people it inhabits

Illness simply is

But people are dynamic, contradictory and splendiferous.

Flawed, imperfect, and resilient

We rise again and again.

We remould our broken pieces.

We deal with shadows and murky depths

And keep paddling

Long after our strength fails.

Because the protagonist in our story isn't illness.

It's us.

Michelle

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

Reclamation.

(Picasso, Woman at the Mirror, 1932, oil on canvas, Museum of Modern Art, NY) 

Mother.

Daughter.

Wife.

Sister.

Purveyor of sandwiches.

And bandager of knees.

She is the girl who wears green jumpers.

She is the girl with red shoes.

The girl who writes.

The girl who eats brown sugar straight from the jar.

The sick girl.
The quiet girl.

The good girl.

She is the construct of the perceptions of others.

She is all of these things.

She is none of these things.

She pulls the flesh from her body.

Slowly at first.

Then faster and faster.

Until all that remains is an amorphous pile of flesh and bones.

She surveys the pile.

She pokes and pushes.

Lifts and twirls.

Each fragment inspected in detail.

A lengthy process of selection and exclusion.

Understanding is reached.

A decision is made.

Excitement builds.

She begins building herself anew.

Piece by piece.

She selects what she wants.

What has meaning.

What feels true.

The pieces that are her.

Slowly the pieces coalesce.

They shudder and strain.

They intertwine and weave.

A portrait of herself of her choosing.

Others see the new her and shy away.

This is not the girl they saw.

The girl they knew.

The girl they were comfortable with.

This is something new.

Strange.

Wild.

Untamed.

The new her jars.

The new her challenges.

The new her blinds those who cannot see.

She walks tall.

She dances as she moves.

Her body fluid and right.

She has found her at last.

Her voice is present in every movement.

In every action.

In every word.

In the angle of her head.

And the song in each breath.

She stores the other pieces.

She reworks some.

She sees potential in others.

She stores them for later use.

For future changes and new possibilities.

She was always there.

Under the layers forced upon her by others.

But now she can finally feel and see and hear and know the lightness of her essence.

The lightness of being.

The lightness of reclamation.

The lightness of her.

Michelle

I found this bit of writing in an old notebook. I used to write whilst I sat in the car waiting for my boys to finish various after school activities. I have a collection of pieces of paper and notebooks with all my scrawled half-formed ideas. 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

When the walls come tumbling down.

When the walls come tumbling down
Will you be smothered under the deluge of brick and mortar
Will you be crushed by the weight
Will you give control to sharp edges and pressing pain
Will you lie unresisting
The breath leave your lungs
And the strength your limbs
Will you plead for release
For the rubble to hear you
To beg for it to move.

Or

Will you recognise the strength that flows within
Will you see that it is not a thing of flesh and bone
Will you see that your body is not you
Will you see that worth and strength are found in all
That the form of strength is not what you expect
That you can fight and resist
Even when the flesh you wear fails.

Will you find the crack
The shaft of light through the rubble overhead
Will you claw your way toward that light
Toward life.

Life different
Life changed
Life that will never be the same
Life that leads us in different paths
Life unlike any other
But life all the same.

Strength is there
Within
It may hide
It may shy away
It may seem lost forever
But the search is worth the effort

It may start small
A rock, rough and dull
But it can be polished
Edges smoothed
Wash it clean
And as the dirt falls away
As the first hints appear
It draws you in with it's promise
And the rubble is seen for what it is

An illusion
A lie
For strength was always there
It only needs to be found.

Michelle