Wednesday, May 9, 2018

Where Puppets and M.E. Collude

As part of the M.E. Visibility Protest which is happening in Dubling on the 10th May, I was asked by the Evening Echo to write a story on how M.E. affects me on a day to day basis.
Thank goodness I found my writing brain again, and this is the story which emerged.

OF course M.E. and my creative life - and puppets too, are totally interwoven.
(ha- I weave too...)  Anyway. The title came first - "Where Puppets and M.E. Collide", but when I started writing, it was actualy more a case of Colluding, not Colliding.

The Editor changed the title to 'M.E. is a blight on my life, but art helps me' as he said

 "We attempted to sum up the article with the headline, Corina, and I am conscious that many M.E sufferers feel the public are not aware of the severity of the illness. I wasn't sure the average reader would get the gist of what the article was about if we ran with the puppet headline, which would have been a shame as we were aiming to raise awareness of the illness and of the forthcoming day in Dublin."
Point taken!
You can Read the article online or see below for the transcript.
Image of page from Evening Echo
Read article online

Where Puppets and M.E. Collude
© Corina Duyn 2018

Twenty years ago I was teaching young people residing in a group home how to make puppets. One funny young man of about 13 made a clown’s head. Gorgeous. Full of expression. But when it came to making the hands, they came out as fists. 

That memory still gives me goose bumps. It was the moment I realized the power of the creative process. Especially using clay in figurative work. I have seen it time and time again, that clay worked with ones bare hands can’t lie. 

Unfortunately I never got to finish making the puppets with this brilliant group of young minds. I became seriously ill with M.E. Initially thought to be meningitis as I had severe headaches, and unable to deal with light, or sounds. I couldn’t sit up and talk at the same time and lost my ability to coordinate my movements. Within days I went from being a self-employed artist to needing help with my most basic needs. My finer motor skills, so important in my work disappeared. Over the following few months I lost the ability to walk properly, to read, to write, having major problem with short-term memory, and experienced intense pain. Most of these problems are still there. Twenty years on.

M.E. (Myalgic Encephalomyelitis) is listed in WHO International Classification of Diseases as an acquired neurological disease. Affecting adults and children, it presents itself with dysregulation of the nervous, immune, and endocrine systems; impaired energy metabolism, and post exertional neuro-immune exhaustion. As in, if we go even a tiny bit over our allotted energy for the day, we end up with a huge increase in our symptoms. Even to the point that we are stuck in bed for days, or even weeks/months. Yet, there is no M.E. specialist or consultant. No clinical care plan pathway. No training of healthcare staff – even in hospitals. Yet some people affected by M.E. are completely bedbound, unable to feed themselves and unable to bear any stimulation such as light or noise.

My creative mind challenged me to explore this utterly changed existence from the start. Initially I made drawings of eggs. The dictionary reassured me that I had not lost my mind. I read that ‘Egg’ also meant the possibility to develop into a new individual. How true this was. I had to start from scratch again.

The eggs hatched and became birds. Years later I had supported flights out in the world beyond my four walls. The drawings, collages, and later plasticine sculptures about these challenges, hopes and desires, ultimately led to personal understanding and acceptance. They also became a way to connect with the outside world through my art and books. 

More that a decade later my sculptures were build on roots. Using the same air-drying clay I used when working with the young people. This material allows me to work for short periods of time (my limit is 20 minutes once a day. I realized that the sculptures represented me being more ‘rooted in my reality’, in the acceptance of M.E. as a permanent fact of my life.
For the past 4 or 5 years a sense of movement appeared in my work. I was utterly convinced that this meant I would be dancing again. Truly dancing.

How wrong I was.

My mobility is decreasing. My independence is decreasing. I am awaiting the arrival of a power chair, and fighting the HSE to receive PA support. 

The suggestion of movement in my sculptures was the start of a very different story. 

I returned to making puppets. This led to facilitating a workshop with (then) fellow members of the IWA. Our short final Life Outside the Box filmwhere our nine puppets step out of society’s disability box, has been shown at several international disability film festivals. Once every three months a short version is on People’s Angelus. A huge empowering step for people with disabilities. 

I teach puppet making about an hour a week in my studio. The invitations to give talks about Puppetry, Disability & Health at two Broken Puppet Symposia and Nottingham Puppet Festival gave me a platform to share the power of this artform to tell our stories. And to dance a little with the world again! The ‘dance’ however is more a slow dance than a Jive. My health is unfortunately greatly challenged by these adventures.  

So, for now, I will leave it to my puppets to tell the story of M.E. The personal, and the political! Puppets aren’t pre judged or labelled, so their voices are heard more easily than that of someone with a socially denigrated disease.

They will be (in some shape or form) protesting at the M.E. Visibility Protest, organised by M.E. Advocates Ireland (MEAI): Thursday 10th May 2018, outside Leinster House from 11.30am to 2.30pm, to demonstrate against the neglect and harm caused to some of the most seriously ill of all patients here in Ireland.

For more about Corina’s work and story or to read more about M.E. please visit:

Reflection Puppets getting ready for ME Protest in Dublin. Photo reproduced in Evening Echo article by Corina Duyn
Reflection Puppets ready for protest
Image reproduced in Evening Echo 

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