M.E. is a blight on my life, but my art helps

Artist CORINA DUYN has been living with the illness M.E for 20 years. Ahead of a protest about the lack of recognition of the condition in the health sector, she talks about how M.E affects her life
M.E. is a blight on my life, but my art helps
Corina Duyn.

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. It was 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 realised the power of the creative process, especially using clay in figurative work. I have seen it time and time again, that clay worked with one’s 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.

It was initially thought to be meningitis as I had severe headaches, and was 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 months I lost the ability to walk properly, to read, to write, had major problem with short-term memory, and experienced intense pain. Most of these problems are still there, 20 years on.

M.E. (Myalgic Encephalomyelitis) is listed in the World Health Organisation International Classification of Diseases as an acquired neurological disease.

Affecting adults and children, it presents itself as 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. To the point that we are stuck in bed for days, or even weeks and months.

Yet, there is no M.E. specialist or consultant. No clinical care plan pathway. No training of healthcare staff — even in hospitals. This despite the fact that some people affected by M.E. are completely bedbound, unable to feed themselves and unable to bear any stimulation such as light or noise.

WE ARE REAL PEOPLE: Two of artist Corina Duyn’s puppets get the message across about M.E
WE ARE REAL PEOPLE: Two of artist Corina Duyn’s puppets get the message across about M.E

My creative mind challenged me to explore this utterly changed existence from the start. Initially I made drawings of eggs. I was reassured that I had not lost my mind when I read that drawing an egg symbolised the possibility to develop into a new individual. How true this was. I had to start from scratch again.

The eggs hatched and became fully fledged ideas. Years later, I have supported flights out in the world beyond my four walls. My 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.

I make my sculptures at my home in Lismore, Co Waterford, using the same air-drying clay I used when working with those young people. This material allows me to work for short periods of time — my limit is 20 minutes once a day. I realised 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 four or five 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 support.

But 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 fellow members of the Irish Wheelchair Association. Our short final Life Outside The Box film, where our nine puppets step out of society’s disability box, has been shown at several international disability film festivals. Every three months a short version is on The People’s Angelus on RTÉ, a huge empowering step for people with disabilities.

I teach puppet making for about an hour a week in my studio. Invitations to give talks about puppetry, disability and 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), this Thursday, May 10, outside Leinster House from 11.30am to 2.30pm, to demonstrate against the neglect and harm caused to some of the most seriously ill patients in Ireland.

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

Website: www.corinaduyn.com

Blog: www.corinaduyn.blogspot.ie

MEAI: www.meadvocatesireland.blogspot.ie

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