Monday, 7 July 2014


(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
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
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.


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.


  1. Go you good thing!!! I LOVED your poem Michelle. I loved the surge of hope when you differentiated between illness and the people it inhabits. I love illness not taking the lead role. I love your work! Keep writing. I'll go out and find some sky for you tomorrow. :-) I hope tonight brings some sweet rest. X

    1. Thanks Rach. I'm really liking the poetry, it's something I haven't done for years so nice to go back to it. I know it's not fantastic and if I went over it again in a few days I'd probably change or tighten up parts. But I like the forcing myself to just spill it all out in 30mins. xx

  2. I am looking forward to sharing this with the Hospice team that I am a part of. Each week we start the team meeting with a centering moment. This week you will be present with your poem. You hit the nail on the head. I have a son with Dysautonomia and I care for the dying so I appreciate when I get the perspective that you boldly shared. Many blessings.

    1. I'm really honoured that you'd share this at your team meeting, plyle. Thank you and I hope it can help in any way xx

  3. I was recently diagnosed with POTS. It's been difficult to accept my new "normal." Thank you for sharing this. It helps me feel less alone.


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

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