Soon to be published!

A while ago I took part in a poetry writing workshops as part of the project “Order, Chaos and Chronic Illness”.  They are putting together an anothology of some of the pieces written in the workshops and have approached me to ask if they can include two of my poems:

Perspective

I have not climbed Mount Everest
But I have reached the peak of Pen-y-Ghent
My own, overwhelming challenge
The same aches in my painful joints
The same sense of achievement
And once in a lifetime-ness

Accident and emergency at York Hospital

Eyes searching
No one helping
Heart racing
Hospital induced panic

From a seat, next to her bed
We pass an iPad between us
Her morphine mind grappling
With scrabble words, scrambled words

One room, four patients
Me, the only visitor
Loneliness cast over the elderly woman
The nurses say they were unable to reach her children

Clatter of life outside rattles into the ward
Her phone alerts her to a friend’s concern
Ours are the only voices
Disrupting the cacophony of A&E

Later, I hear how the laughter has brightened
Her roommates’ day and how lovely my sister is
She’s always been a charmer
Even from her hospital bed

#YouCanSeeIt

#YouCanSeeIt came across my twitter feed this weekend.  Inspired by this post, it’s about the visible signs of invisible illness.  I was in Brussels for a weekend away when I saw the hashtag.  Being away and exploring a new place was great but I was feeling particularly annoyed with one of my invisible illnesses.

Ehlers Danlos Syndrome or Hypermobility Syndrome is a genetic condition which affects the make up of collagen which unfortunately in turn, makes up a lot of the human body.  The main way I am affected is chronic joint and muscle pain including joint dislocations and subluxations as well as fatigue.  And by fatigue I don’t mean being a little bit tired but being exhausted most of the time and never having a refreshing nights sleep.  Being so mentally and physically tired that you can no longer speak and the idea that you might want to swing your legs onto the bed for comfort is out of reach.

You can see it…

You can see it when I bite my lip

Persevering with every step

You can see it when I stop to gather strength

At the foot of the stairs

You can see it when my eyes zone out

And it’s like I’m not there

You can see it when my hands

Clutch at my ribs, holding myself together

You can see it when I slump to the floor

Unable to stand any longer

Poetry and illness

The Centre for Chronic Diseases and Disorders is exploring poetry and illness.  As part of this, they have been running a series of workshops aimed at health care professionals, and people affected by chronic illness.  In addition to the workshops there are a couple of events coming up in York in June and an anthology of poems is going to be put together.

I went along to one of the workshops this week, not entirely sure what I was walking into.  I really enjoyed the two and a half hour session led by Peter Sansom who has contagious enthusiasm.

The afternoon was generally took the form of a poem being read aloud and then a few minutes for us to write, generally based on a similar structure or prompt from the poem.

The following are some of my unedited scribblings from the afternoon.  I do plan on revisiting and revising them.

Prompt: Where am I?

I’m under the duvet hiding from my life
I’m twisted, contorted around a waiting room chair
I’m in every joint of my being, feeling the blurry edges of pain
I’m stuck in my mind, trapped by mental illness, freed by imagination
I’m sunsoaked, by the sea
I’m where I want to be

Prompt: Julia Darling’s Chemotherapy, “I did not imagine…”

She did not imagine that at twenty seven she would have shrunk
Smaller than her eighteen year old self
She thought there was a world, awaiting her
Free from the black that clung to her

She had moved one hundred miles
One hundred miles, nine years
More scars, new pains
She hadn’t had a plan but she did not imagine this.

Prompt: I’ve not done… but I have… (I think this was based on a poem by Simon Armitage)

I have not climbed Mount Everest
But I have reached the peak of Pen-y-Ghent
My own, overwhelming challenge
The same aches in my painful joints
The same sense of achievement
And once in a lifetime-ness

Prompt: Imagine a time you were in a hospital

Hurry though automatic doors
Trying to find her
Eyes searching
No one helping
Heart racing
Hospital induced panic

From a seat, next to her bed
We pass an iPad between us
Her morphine mind grappling
With scrabble words, scrambled words

One room, four patients, one visitor
Loneliness cast over the elderly woman
The nurses say they were unable to reach her children

Clatter of life outside rattles into the ward
Her phone alerts her to a friend’s concern
Ours are the only voices
Disrupting the symphony of A&E.

Later, I hear how the laughter has brightened
Her roommates’ day and how lovely my sister is
She’s always been a charmer
Even from her hospital bed

Prompt: Write to something eg jogging, stammering, piano lessons

A letter to my chronic illness:

Why did you come into
My life and start stealing from
Me? What had I done to
Provoke you? You are
Stripping back my independence.
I’m clinging tightly but it’s
Exhausting when you throw toddler tantrums
How can I hold my
Grip on myself when you scream
At my ankles, at my legs, at my body?
You’ve taken so much and
Given so little.  If you were a
Friend, I’d have crossed you
Out of my address book years ago.
You’ve ripped my dreams to pieces
Whilst laughing in my face.
You’re always and forever there.
Please tell me
How can I get a divorce?

Yours, in shackles and chains.