Sliding Scale

I’m a kid again, clinging on to one of those tall steel slides at the local playground. I’ve been working my way up the slide from the bottom; hand over hand, feet slipping.  My grip is slick with the strain. I am so close to the platform that can see the wood grained ends of the planks, right at my eye level.  I shift my gaze to the macro view of peeling paint on the iron frame. Fix my sight, right there. So close! My shaking arms are holding my weight but I need to let go to reach the edge! 

I lunge for it and lose my grip, clutching wildly for the sides as I slip backwards, defeated. I  land unceremoniously on my backside in the puddle at the bottom of the slide.  It was all for nothing. I hear laughter as I move to stand.
“Never mind, you’ll make it when you’re bigger” my sister says. I am embarrassed and inadequate. I glare at that slide and the nasty kids over on the swings and stomp off to the bench.  Who needs to make it to the top anyway?   Stupid slide.



I have a to-do list for today.  Nothing odd about that, I’ve got a normal first world obsession with lists and accomplishments.  Like many women, looking at their lists this morning, I look at mine and think ‘I can’t do it, I haven’t a hope of getting through that list’.  A wisp of a dream image ghosts across my mind. Sheer slippery metal glinting across my subconcious.  I know that I do want to make it to the end of that list.  Very badly.  I want to feel what it is like again to achieve something.  To stand on the platform, King of my Castle.

There are three things on it.

Two are online banking tasks.
One requires getting up, getting dressed, going to the hospital and seeing my General Physician for our regular check up.

And I recognise, that the girl I used to be would have chewed through that list in no time. Bam. 
Not anymore.  It seems like my lists are getting shorter and my efforts to achieve them are bigger than before.  It’s a sliding scale.  I have reduced my expectations about how far I can walk, about how much I can be involved in school, about work, about social gatherings, about mothering, being a wife, a homemaker, an do-er.  I even modify my view of what ‘feeling good’ should feel like.  I make my ‘normal’ from the abnormal. I shrink my expectations of what I should achieve in a day, yet I never make it to the top of my expectations.  How small must they be?  And why do they seem bigger than before, even though I keep paring them back?



Source:  Andersen Layman


I’m at the bottom of that slide, looking up.  The ground I am standing on is eroding.  If I don’t jump soon, the slide will be too far away for me to even lunge on to it. I call out for my sister.  “Help me!” 
I can’t see her.  The playground is empty.  The slide looms above me, and I am a tiny thing, an ant. I haven’t a hope of getting up that slide.  I sit down and let the earth take me away in a rivulet torrent of rain and silt. I am tossed in the miniature rapids, growing smaller with each tumble.  Until at last, I am a speck of dust.  The sun beats warm down on my back.  And I, just am.
Sometimes, it is all I can be.

Poetry Free Fall

My friend and fellow Dysautonomia blogger across the ditch ran a great series for Awareness Month this year.  She asked other Dysautonomiacs to submit pieces that explore Dysautonomia through the arts.  She collected a range of paintings, sketches, songs and poetry.

This is a little poem I submitted.  It’s a bit darker than my usual writing, but I’m okay (I say that just in case you are the sort to worry about people writing dark poetry).  It was great to express some of these feelings in the context of a poem and for a specific project.  I have always loved the distillation of words that poetry writing requires, even if my own poetry skills are fledgling!

This poem is about my complicated relationship with sleep and hope and despair. It is about what it feels like to know that the thing you struggle with every day may never in fact get better.  It’s a feeling of falling.  I post it, all the while hoping that whatever your day is holding for you, you get to fly more than you fall today.

Arohanui x



Mail Attachment