Saturday, August 19, 2017

M.E. (ME/CFS) and the fight for rights

(Edit:just noticed that this post comes up rather scrambled on iPhone. No idea why this happened. It is fine on iPad or Computer. I had to re-edit the post. Sorry for any inconvenience. Corina. )

 This account by Dr. Myhill almost made me cry.

I have been subjected to the CBT/ Graded Exercise proposition during hospital stays, and appointments, but avoided having to actually undergoing this "treatment" See my story HERE

 The "all in your head" scenario still prevails... Prescriptions for anti-depressants are still being given... But the fight for our rights and doctors rights have taken a new step.

 This short (6.40 min) but powerful video is a great explanation of how hard people with M.E have to fight to get treatment, and to be able to avail of the right support. But also how some practitioners have to fight to be able give treatments. I did not know that many doctors have been struck of the medical councils as they have treated people with M.E.

 Dr. Myhill tells in short about the very flawed and fraudulent data of the now notorious PACE trial carried out in 2011. How the findings of this government funded trial concluded that CBT (Cognitive Behavioural Therapy) and Graded exercises were the only way people with ME/CFS would "recover".

The trail has now finally been taken apart. It has been a long battle.
Dr Myhill  is now hoping to get MPs to sign up to MAIMES - Medical Abuse in ME Sufferers - to demand a Public Inquiry into the abuse of ME sufferers over the last few decades.

 PS. have not met this doctor, but know of others who have been treated by her. 
Her videos and talks are very much to the point. No nonsense 

 Watch the video Here :

Sunday, August 13, 2017

The astonishing world inhabited by puppets

Attending the Puppet Symposium  last week was like stepping into a completely new world. And yet when I entered it, and moved about with open eyes and ears, I realised I had been part of this amazing, creative, fun, healing, and astonishing place for pretty much all my life. 

I just did not know it...

photo of Persephone Sextou and puppet Johnny Dwyer having a private moment.  Corina Duyn is holding the puppet
Persephone Sextou and puppet Johnny Dwyer having a private moment.
 (I am allowed to witness this...)

Johnny's Ancestors

While writing my paper/ my presentation for the Symposium, I looked back at the dolls and puppets I created in my life. I made dolls clothes on an Singer hand sewing machine around the ages of 7, or 8. Made my first doll at the age of ten. Borrowed doll making books throughout my teens from the library, and bought my first book at the age of 16. My first ever puppet, a clown, was created from this book. I still use the puppet body design in today's classes! Nearly 40 years on...

Fantasy Folk

Moving to Ireland saw the start of my Fantasy Folk Artist Dolls and Puppets. I had my work in shops, and has solo exhibitions. I work on Private and corporate commissions. Including the Waterford Crystal one, I wrote about a while back. A puppet/animated related work was that of Ballycardool  by Jimmy Marukami. I also taught puppet making with two young art students from Finland, and in a group home, in the months before illness changed my life in 1998.

Puppet Power

During this work at the group home with teenagers, I realised the Power of Puppets. I think there were about 6 youngsters in the group. All Very Eager to work with me. We had made the heads of the puppets and had started on the hands. One young lad of about 13 had made a clown's head. Gorgeous. Funny. Just like himself. But when he made the hands, they were closed fists.
Powerful stuff.

I still feel bad for leaving these youngsters without finishing their puppet. I was too ill to even sit up, not to mind teach. 19 years later I still want to work with them. They probably have kids of their own by now, but if they read this, please get in touch.

Moving on

Puppets made their return in a big way when I started to facilitate the Life Outside the Box Puppet project with fellow members of the Irish Wheelchair Association (IWA) in 2015. This project catapulted me into the Puppet Power World, and into that of the Puppet Symposium. I just didn't see it coming! 

Yes, I know I was invited to talk about the project. And yes, I was a little scared to say my bit amongst researchers, and speakers from all over the world. People who are involved with puppetry for years, and know what they are talking about.
As it turned out, I also know what I am talking about. 
I know the journey I made from childhood in dolls and puppets, from being an artist, witnessing the powerful ways puppets can explore challenges in our lives. I have seen it. I have lived it. 
I just didn't realize that what I have been doing in my work, especially working with others with disabilities, while living with disability myself, represents a unique experience. 

Puppetry and disability

One of the first speakers Moira Jenkins, a lawyer, puppeteer, and lecturer, talked about the UN Convention of the rights of a person with disabilities - Which by the way is still not ratified by the Irish government - to be involved in the arts. More than just participation. We have every right to be respected as the originator and creator of our own work. (Article 30(2)  Including puppetry. 
Arts as a practice, not therapy.

I was nodding like a lunatic at so much what Moira was saying. Especially when it came to those horrible terms like 'service user' which I was labeled when a member of the IWA... Also when it came to context providers not just content providers. I created the context with my project, and so did my fellow members! Proud of that.

Puppets as story tellers 

Over the two days I filled my head with images, and words, and stories, and opportunities. Some I listened to at the symposium, others via Skype while lying on my hotel bed. Thank you Emma for providing this option for me. 

I was in awe with the presentation by Andrea Markovits from Chile, who talked about the puppets and traumatic memory project. Exploring the  pain felt by the public of the past regime in Chile, the families of the disappeared, the tortured. Silent puppets. Beautiful puppets. Powerful stories.

There were speakers from Japan, UK, Brazil, Germany, Finland, Portugal, Ireland, and Costa Rica (I think).
Subjects were: Well being, Disability, Hospital and care settings, and mental health. But even within these there was such a variety of subjects.

The speakers were either researchers in the field of puppetry, for example Persephone Sextou's 'Theatre for one' with children in hospitals, to Caroline Astell-Burt who teaches at the London school of puppetry. Antje Wegener who uses puppets with kids dealing with trauma. Or puppeteers with their own story to tell. (See all names here).  I loved how Oscar Goldszmidt worked with youngster with cerebral palsy, and enabled them to manipulate puppets...

The talks that touched me most were the ones where puppets transformed the lives of their makers. Most of the time by surprise. Puppets made Emma Fisher come out as disabled. A bit like coming out as LGBT. It informed her thesis about puppets and disability, which was initially about others with disability. For some the puppets they created supported them during mental health challenges. For example Kate James-Moore, and Aaron Jean Crombe. I think it was Joni-Rae Carrack, who said 'Puppets can be both objects and subjects',  in her talk about anxiety. Kate said that 'puppetry saved her life'.

The whole experience left me filled with images, and thoughts, and questions of where to go from here? It feels like there is no going back now. No going back into my box!

black and white photo of corina duyn lifting her puppet out of the box at the Puppet symposium
To me this photo says it all:
Puppet Johnny Dwyer and myself 

stepping into life...

© Photo by Nik Palmer  of Noisy Oyster
More photos by Nik see HERE

What next?

I had the pleasure of spending some time with Marisa Latimer after the symposium. She told me about her travels with puppets. Through college, working with puppeteers, stories from Japan. Expanding on the world I kind of knew existed.
Listening to her, I remembered the exact location of a puppet theatre in the city of Haarlem, where I lived 8 years before moving to Ireland. I always wanted to go in. I never did. 
I also remembered a very vivid dream of a kind of underground puppet theatre/museum. I remembered that I had copied puppet making books from the library over 20 years ago. How I have one business card with a puppet sitting by a pile of books, for at least 19 years.
That I was part of the puppet festival during a doll making week in France the year I got ill. 

I had communications with Kate, Aaron, Emma and Perspehone. And a meeting with Moira. Which has led to the invitation to give guest lectures at CIT, and a collaboration about Disability Rights and Puppetry. And other future possibilities for my work...
It is all hugely exciting. 
I am aware my body might not (yet) be as excited as my head, but I am certainly going to take small steps into this world which has been presented to me. Loud and Clear.
I hear you!!

Puppets have been part of my life. A hidden part of my life. Deep in my psyche.
They, and me, are ready to come out and play!!

To finish this amazing week, I learned that The life outside the box project was also mentioned in a Journal..., see link below.
The puppet making classes are going well, and I have already four more students lined up.
And I am now a member of the Irish UNIMA (International Union of Puppets, a non-governmental organisation affiliated to UNESCO)


group photo of speakers and puppets at Puppet Symposium UCC, cork
Most of the speakers and visiting puppets at the symposium.
Mad bunch!

Further reading and links

Monday, July 31, 2017

Monday - a new beginning

A new day,
a new week,
a new challenge,
a new opportunity.

I like new beginnings.
They (can) scare me a little too.

Today I will be teaching my second puppet making class. Start of making the faces. A fascinating part of the process.  Dolls/puppets create themselves... they often end up looking like their makers.

Today I also have to finish preparation for the talk at the Puppet Symposium. (Putting it onto a memory stick, is pretty much all there is left to do!)
Almost there.
A talk about puppets in my life, and how illness in a way brought me to facilitating the Life Outside the Box puppet project, and all the amazing things I witnessed during the project.
still from puppet symposium talk how illness changed my life Corina Duyn
still from my talk how illness changed my life
still from puppet symposium talk 'Life Outside the Box' puppet project .Corina Duyn
still from my talk about the 'Life Outside the Box' project

still from puppet symposium talk 'Life Outside the Box' puppet project .Corina Duyn
still from my talk about the 'Life Outside the Box' project
Yes I am excited to be among others from all over the world who have an interest in puppets, health and disability.

Yes, I am a little worried too:
The logistics of travel; Working out how to best use my limited energy; Can I leave for a rest and not feel I am missing out. Staying in a hotel, and getting around (Thanks Pascale for being my PA!). Standing (sitting) up and sharing my story among this amazing line up of speakers. A little daunting, and yet I know I can do it.

Johhny Dwyer puppet ready to go to puppet symposium .Corina Duyn
Johnny Dwyer is ready to go!

For all the details of the Symposium, please visit the PUPPET BLOG where there is also a list of all the speakers and their brief. Speakers from as far as (I think) Chile, Germany, Japan, UK... and goodness know from where else.

for example:
Dr Melissa Trimingham: Puppetry and autism
Yasuko Senda: Heart-warming Smile Puppet Association
Emma Fisher: The Broken Puppet: puppetry and disability 
Poupak Azimpour: Listener dolls: a case study of women recovering from cancer
Gibdel Wilson: Puppets talk, communities listen
Aaron Jean Crombé: Self-acceptance and puppetry

A new era has begun, or just the next logical step in my story!

Talk to you soon.

Tuesday, July 25, 2017

All done and dusted

The hospital saga is finally over.
During the past 6 months there has been WAY too much emphasis on medical issues. Hospital appointments, procedures, surgery, in patient stays and waiting for scans and results...

After seeing the neurologist yesterday (a three and half hour wait in a crowded waiting room and corridor) I was told that although the MRI scan revealed further deterioration of my upper spine/neck, the spinal cord was not affected. GOOD! So knowing that, I can go back to sorting my wacky body out for myself. In the way I feel best. Away from hospitals.
The answers to my wellbeing are not to be found in hospitals...
There was a brief mention again of neuro-psychiatry but I choose to ignore that. Also some other scary sounding drug, which improves energy, and is used by guys running around on the stockbroker markets... I am not interested.

What I am interested in, is, how I can go back to being me. 
To play in my studio. To be among creative individuals. To be out in nature, in my garden, and beyond. To find solace in meditation, and silence. To explore how I can increase my movements.
observing the many bees on my lavender plant
To get back on track with my walking plan, and now I know that my spinal cord is ok, I can do some gentle exercises with more confidence. I will seek support with straightening my 'twisted' spine and neck. And maybe, just maybe, I can put a plan in place to get onto some form of bicycle... Even if that means starting with a peddle-devise placed on the floor to get my legs moving like it would be on a bike. Sitting on the duo-bicycle in Holland is still SO much on my mind.

It is just unfortunate that there was a two month delay (after being an in-patient in hospital) to be able to trust my own gut feelings. Medics around me all had emphasized the importance of the brain, neck and upper spine MRI, that I felt my life - my progress back to some 'normality'- was on hold.

Health Service Executive


I am looking forward to getting back on track.

In the creative sense I have already done so.

  • I started teaching my first puppet making class last Sunday. A class of three students.
  • And I already have three students booked in for a class starting in September.
  • Next week I will be giving my talk at the Puppet Symposium. I am honoured to be among such an amazing group of speakers from all over the world. (And a little daunted by it too, to be honest.)
  • And I have made a gentle return to working on my animation figures. Making a mould to make little hands... This is already a one year project. Two to make the finishing line?

Anne and Margaret working hard
start of making the head
Even at this early stage the three puppets
are developing their own personalities
making the base for the puppet hands 
making the base for the puppet hands

Thursday, July 20, 2017

A set of cards to support people living with chronic illness

An M.E. buddy Ricky Buchanan created this wonderful set of 'Energy-Saving Self Care Cards'. With a  few words of realistic goals for chronically ill people, even those who are housebound or bed bound, like Ricky herself.
'Energy-Saving Self Care Cards' by Ricky Buchanan

"Cards have been sorted into three categories - "Internal" cards have suggestions that are all in your head. "External" cards for things you can do in the world, and "Sensory" for suggestions that cater to your five senses.

They fit in the palm of your hand, like a deck of playing cards.

The set is available HERE. The order arrived within about ten days.
A few of the cards, including one of the blank ones
to write your own thoughts o

Maybe, if others in Ireland are interested in getting a pack, it might be an idea to order several sets to be posted to the one address. It would cut the postage costs.

Well done Ricky!
I love them.


Wednesday, July 19, 2017

Puppet making workshop

It has been a while since wrote my blog...

Writing time on the computer is limited. Like anything else in life, priorities had to be made.

As you might have read, for the past while I had to dig deep to find my balance again. To find the trust again in who I am as an artist and writer living with chronic illness.

I dug deep. Literally in the soil of my garden, and metaphorically in my being.
Sorting what could go: plants, stuff, weeds, people, thoughts, situations. I looked back at what works for me, where my life's interest are, and being (somewhat) realistic where my capabilities lie. Anyway, I know that all of this was to make space for new adventures.

The Life Outside the Box Puppet project, which I facilitated a while back with my fellow members of the Irish Wheelchair Association (IWA), is a project dear to my heart. I loved working with my fellow members. To see them grow in confidence. To explore how they could make the puppets. To be part of the laughter. The joy. To see how to project was welcomed outside of the IWA. Out in the community.

I am ready to see how I can develop my ideas further, also in practical terms. I have made some amazing creative contacts of late, who have all supported me to make this next step. The Puppet Symposium in a few weeks, is a wonderful opportunity to make valuable contacts in this new field of research. And have applied for a Arts Participation Bursary from the Arts Council.
I am stepping out of my box. Out of my cocoon.

And I am excited to say, that I am getting my studio, and mind, ready to welcome my first three puppet making students. We are starting in a few days!

Ready for the first puppet making workshop
puppet in the making... (with walking sticks)
this is how it will all begin
The Little Wings Studio

See more about my projects, and ideas, HERE