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
8-5-2018
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. 

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 (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 


Sunday, May 6, 2018

At present, I am utterly overwhelmed by the reality of M.E.

Sorry for not having been in touch as promised during my Puppet Travels.
Poilin Puppet looking out the window  - Corina Duyn Puppets
Póilin looking out at the birds
(just like me)

To my astonishment, I did not even write one word in my personal diary/journal/notebook what ever one wants to call it. I came back with a completely blank (brand new- gorgeous leather bound) notebook.


When I think about it, maybe it is not so 'astounishing' as although I managed to do my talks and meetings - most of the remainder of my time I was resting. And tried very hard to stay as well as well could be.
I did it.
I am proud I did my talks. Honoured to have received such lovely responses. Grateful for the time I was given by other puppet makers/designers/performers to explore new skills and to find way to incorporate puppets in my journey with M.E. Touched by the kindness of strangers, who wanted to hear my story and by those who so kindly gave their time to support me.

But.

I am so utterly overwhelmed by the reality of M.E. By the onslaught this adventure had on my body. On my mind. On my conviction that I can rise above the challenges of my body. 

I can't.


And that is another reason why I still have not written one word in my diary. Because I know that if I start writing about the amazing people I met, the joy of 'all things puppet', the kindness, the opportunities, I will also have to fact that I feel utterly at a loss. That I am out of sorts. That I am so aware of the reality of even more limiting mobility, of needing more practical support, of the fight we - as people with M.E- have to fight in order to be heard and seen. To be accepted. To be understood. To be valued. To have our very real and honest experiences taken seriously by the HSE and the Government. To not be told that we are not ill.
Oh my goodness, do I want to be well!

I want to be able to follow up on the puppet and writing opportunities coming my way.
I want to 'go out and play'.
I want to write for journals. For news papers.
To go back into my studio and explore new ways of making puppets.
I long to go out and walk. To just leave my house - alone- and go to the supermarket - the bank- a cafe.
Go for walk outside my gate to the river I know is there.
Take a drive to the beach. A walk in the woods. To touch and smell the forest.
To see spring/summer arrive. To see the forest carpet of blue bells and wild garlic.

(of boy - this writing is taking a very different leap to what I thought when I turned on the computer...)


Anyway. If anyone dares to tell me that I am ill because of a lack of 'want', 
Well, as one of my puppets said:
'The next dr. who tells me 'it's all in my head
and that happy thoughts will cure me'

Well, I'd better NOT say what
I will do to them ...

MEAI
One of "The Girls - Reflection Puppets" by Corina Duyn" ready for the Protest in Dublin, holding a placard
One of "The Girls" ready for the Protest in Dublin


Yes, I am utterly sad at the moment. 

I am sad because I am ill.
I am not ill because I am sad.


I am sad as I know of so many others with M.E. who are fighting all the time to be heard, to get support. Who are stuck at home and are doing their best to find ways to live well.
As you might know, I am a member of M.E. Advocates Ireland- a groups of 7 women, all living with or caring for someone with M.E. On our blog there are some harrowing, sad, powerful stories about the reality of life with M.E. And how wee see what needs to be - and can- change.

We campaign from our beds and homes.
We are campaigning for change - through the media - social media  - radio interview and a Visibility Protest on Thursday A 10th May at our Government Buildings  
I won't be there myself, but am doing my bit through the media. Travel, or staying overnight in a hotel is way beyond me at the moment. Even the thought of it is too much. 
Read article HERE 

Uprooting- and grounding 


To find me again, within the reality of M.E., I have been resting. Watching movies. Watching the birds. And been reconnecting with the earth. Every day I go out and clear a tiny patch in my garden. 5 minutes. Ten minutes when I am brave - or foolish. 
Feeling the earth. Smelling the earth. Touching base. Grounding myself, are hugely important.

 ... and funny enough I seem to have done the exact same last year when I felt 'out of sorts'  
after time away from all I know...


Slowly, I hope to gaining ground again.
Clearing my garden also creates a sense of space. Physical space in my garden, mental space in my head.

I hope that by having been brave enough to face my blog again, maybe I will truly pick up my pen and start writing. Start facing the daemons. Find that level of acceptance again and move on.

When the time is right, I will look at the photos of my puppet adventures. Listen to the talks I gave, and try to bring the experiences into focus, for myself and for anyone who want to hear/read it.

Thank you again to all who made the journey possible. 
In time I will understand the essence of this adventure. Learn from it and find ways to incorporate puppets and travel into my life.

Much love.

Corina


Saturday, March 17, 2018

Thanks to your understanding and support I can continue to share my story

And so the journey continues
and starts for real on Wednesday.

My deepest gratitude to all of you who made this happen.
UK, here we come!



Póilin puppet says Thank You Corina Duyn to Nottingham Puppet Festival
Póilin says Thank You

What an amazing few weeks it has been.
Two and a half weeks ago I received an email with the disappointing news that I was refused funding from a government and council funded Arts organisation to go on the Biggest Creative Journey of my life. To develop my Arts Practice.  But it brought out the best in all of you. 
Thank you.
I have yet to receive a response to my email in which I expressed my disappointment and asked for feedback.

Many of you truly understood the hugely significant opportunity to share my explorations of illness/disability through art and puppetry, and to engage with many others involved in puppetry and disability. To share, to learn, and to share again.

My brother Kees and his wife Janet, and some friends suggested I'd start a Crowd Funding Campaign. I was hesitant as I know we all struggle to keep our finances in tact. Also, I did not have the energy to embark on exploring the usual crowd funding platforms. Time on the computer has been severely curtailed the past 6 weeks or so, due to being ill (more ill than normal). And I had to write my presentations.  But, I thought, I could perhaps make a page on my website.

Oh boy, did you all come out with such kindness and understanding.

I received 50 donations and book orders to date. And thereby reaching my basic target, to have funds to pay for accommodation and one meal a day. THANK YOU. 
But besides the funding, I also received such amazing emails, and letters, and cards, and messages. Others shared my story on social media. And in doing so brought awareness of the challenges of living with M.E.
My goodness, you all truly warmed my heart.

I was in tears by every notification. I am in tears now, while writing this.

Tears from gratitude.


Also,
  • I was interviewed on The world in View in which Bernadette and Stan Philips were supportive of my journey and were very disappointed that I did not receive funding. They highlighted M.E., and being an advocate for M.E. through M.E. Advocates Ireland . They highlighted disability, the power of art, and of course the travels to the UK.
  • And by by Emily Ahern from the Avondhu Newspaper.
  • Rachel Reeves contacted me for an article for the Nottingham Puppet Festival: The Power of Puppetry.
  • And Greg Crowhurst made a (tribute) video to celebrate the making of his puppet through distant learning: Here comes Johnny which is a celebration and the power of sharing the art of puppetry to bring people out of isolation.


Avondhu newpaper, page 22, 15-3-2018. Emily Ahern
Avondhu newpaper, page 22, 15-3-2018. Emily Ahern

THANK YOU ALL FROM THE DEEPEST PART OF MY HEART.
XXX

I am ready to go.
As ready as I will ever be.


If you like to stay in touch with the stories emerging from my travels:
  • please sign up for email updates - see top right of screen when viewing web version or on laptop/computer.
  • Or "like" my Facebook page
With every best wish, and thank you So much for coming along on my journey.



UK dates:
  • Both are Free events, but tickets can be booked in advance 
  • Talk in connection with Puppet Place Bristol 29th March - details to be anounched  










Monday, March 12, 2018

Cecile's story will live on through Póilin (Puppet)

Life can be so amazing, 

and sad, and inspiring, 

and full of contradictions 

and syncronicities all at the same time.

Cecilia Maier Gilchrest March 23, 1944 - March 03, 2018


The past few days I have finally started to put words and images together for my first talk in Nottingham Puppet Festival. The thoughts were well formed in my mind. I just hadn't found the moment yet to put the thoughts in order and into a presentation.

Friday was the day 'it happened'.
The thoughts, and the many notes I had made during the past 6 weeks of pretty much 'hugging the couch', were put in a reasonably orderly manner on a large blank page!

One of the notes I found were by my friend Cecile

"What an auspicious way to begin spring*. 
The energy that propels you so gracefully to give the gift of puppets to others."

* 21st March is first day of spring in USA & Holland anyway


21st March also happens to be World Puppetry Day.

My first talk is on the 23rd March. Cecile's birthday.

Yesterday I added a very short film to my presentation, of Cecile and Póilin Puppet having a moment of deep connection.
A few hours later I heard that Cecile had passed away on the 3rd March.

Rest in peace my dear friend.


Cecile and I met last month for the first time. But we had been in contact via email, and via our spiritual beings for over two years. Read her/our story here. It is beautiful.


"And then we stood on the wall, held hands, 
and flew in one of the most beautiful dreams of my life."

Cecile Gilchrest

In short, the book-in-a-box format of my book Into the Light  was conceived in room 4 of the Care Centre at Dzogchen Beara. Cecile stayed in room 4 a few months after the book was officiallly launched there. She connected with the words and images, and with the author on a very deep level. When made aware of the connection with the very room, email contact was initiated.


How beautiful a journey we have had over the past two and a half years. Not beautiful in terms of our health challenges, but beautiful to develop a deep understanding of our lives, and the way we find ways to live the best way we can.

We often shared a 'cup of tea', while I'd sit beside her bed.
All via our emails and thoughts, as Cecile lived in the USA, I am in Ireland.

We often shared 'virtual' time in the conservatory of room 4 at the Care Centre. Again in our thoughts, and with the idea, that ONE day, we will actually be together.

It became a reality.

We booked a stay at the Care Centre for the first week in February 2018. Cecile was accompanied by her daughter Monique and friend Dolores (Dee). They travelled all the way from the USA.

I am so immensely grateful for having had time with Cecile.
We talked. Cried. Laughed. Hung out.
Unfortunately I was ill during my stay, so didn't get to spend as much time as I would have hoped, but we met every day in room 4!

Last year we realized we also both have a connection with puppetry.
Cecile used puppetry until the age of 26. She clearly never lost her skills, as watching her animate my puppet Póilin, was just pure magic. I had only seen my puppet as an object I was working on.
In Cecile's hands she came alive.
So, Póilin was truly born on the 2nd February 2018.


Thank you Cecile.
Your story, and stories, and I have many in my head and heart, will live on through Póilin.

Rest peacefully my dear friend.
It has been an honour to have been part of your life.

Corina

12th March 2018











Wednesday, February 28, 2018

How hard does one have to fight to be heard

Beware this is a post about disappointment.
About the feeling to always have to fight for support.
About feeling gutted, and NOT be heard by an arts organization.
About always trying to find ways to live the best live I can.
Regardless of M.E.

I don't give up.
But I need support 
to live
to survive
to progress creatively.

Throughout twenty years of illness/disability 
I continue to learn.
And share my experiences.
Creatively.

I love life.
Even though I have to plan every single day 
in the tiniest segments 
to make my (creative) life happen.
And am digging SO deep (mentally and physically) 
to follow up on the amazing opportunities 
which have been presented to me.


What am I talking about?

Well, as you might have read/heard my puppetry work 
has taken me out of twenty years of (almost) creative solitude. 
It is hugely exciting.

I requested funding through an arts funding organization, 
to support me during this four week long opportunity.
To be able to 
Share and Learn.
But,
have just heard that I have been unsuccessful. 
A very generic letter was forwarded to me:
...


I was invited to talk at the Broken Puppet Symposium last year. This has lead to the opportunities in the UK starting in a few weeks.  In brief, I have been invited to give talks about puppetry, disability & health  at the Nottingham Puppet Festival. The Broken Puppet has their second symposium in Bath, where I have been invited as keynote speaker. In between these two opportunities I get to meet other artists and puppeteers. See more HERE


Don't get me wrong. 
I am not looking for easy hand outs here.
And, I have been unsuccessful with applications in the past. And with some I was successful.
The rejections this time however is hitting me deeply.
VERY deeply.

I feel (maybe unjustified, I don't know) that this is a rejection on the very journey I have undertaken to make life with M.E. bearable, and even fun. 
A rejection as an artist with a disability. 
A rejection as an artist who lives with M.E., which is so often still not seen as real. 

I have learned so much and have taken the opportunity to share what I have learned via my books, my art and this very blog. And recently sharing my work in a more hands-on way. Through facilitating puppet making workshops. 
Which is a beautiful journey. 
But is a huge challenge on my physical wellbeing. But my mental state is as important as my physical well-being.  And that is Also the experience I hope to share during my talks in the UK...

A few of the notes from my application:
  • At this pivotal junction in my artistic career as a disabled artist, writer, puppet maker and facilitator, I have been invited as Keynote speaker at the 'Broken Puppet' (2) Symposium on Puppetry & Disability, and give lectures & and workshops at Nottingham Trent University during the Nottingham Puppet Festival, and Bath Spa University. 
  • 'Puppet Place' in Bristol, whom is developing a knowledge base within applied puppetry, invited me to exchange knowledge and practical skills with their artists.
  • All explore the intersection of the art of puppetry and disability;  how this can produce innovative art forms, and bring disability into the minds of a wider audience through the creative arts. 
  • Throughout this month of talks, festival, symposium, research and training, I will have the opportunity to network and learn from other puppet makers and puppeteers, to greatly enhance my own puppet making practice.  
  • Due to illness/disability I require a PA to support me throughout this month-long opportunity.

Abstract of support letters:

Nottingham Trent University
o   “Nottingham Trent University, in partnership with the Theatre Royal & Royal Concert Hall and City Arts Nottingham, is producing the first Puppet Festival for Nottingham in March 2018. As part of the Festival, we are promoting the craft of Puppetry through a series of talks and workshops. Your expertise, in both writing and disability arts would be empowering to both students and professionals. We would be delighted to extend an invitation for you to present the following: Puppetry- Health and wellbeing.  & Writing for puppetry.”
§  Sean Myatt, Senior LecturerDesign for Performance,School of Art & Design, Nottingham Trent University
 Puppet Place, Bristol:
o   “Puppet Place is developing a programme strand – Interchange –specifically to look at how to develop puppetry as an innovative art-form for disabled and diverse communities and we would love to share this research and our findings with you to develop both your practice and ours in the future. We would like to invite you to deliver a talk at Puppet Place to our community of artists and partner organisations regarding your experiences. We can also facilitate meetings with other artists and organisations in the city as you may wish to further your own practice.”
§  Rachel McNally, Puppet Place Executive Producer

 Broken Puppet (2) Symposium on Puppetry and Disability & Bath Spa University:
o   “I am delighted to invite you to be keynote speaker. The symposium is a collaboration between Bath Spa University’s Arts and Social Change Research Group, the UNIMA Research Commission, and Puppet Place. It will bring together artists, ¨scholars¨, and members of the public to reflect on ¨analyse¨ and further develop work in the field of puppetry and disability performance through exploring the ways puppetry and disability intersect to produce innovative art forms.”
o   “Guest lecture for the Bath Spa University Arts and Social Change Research Group. & Conducting a workshop with Level 5 Drama undergraduates.” 
§  Dr. Laura Purcell Gates, Reader in Drama. Director Arts and Social Change Research Group, Bath Spa University

I will go.
I will prepare for my talks.
I will learn and share.
And come home exhausted but I can imagine, happy. And fulfilled. And filled with material for another book. For more facilitating work. Filled with ideas for my own development.

I will get paid for the Nottingham talks, and for my travel. I will get paid for the lecture at Bath University.  But I still have to finance much of the accommodation and cost of sustenance for myself and the kind friends whom are staying with me during the month.

There has been kindness from family and friends too, in way of donations:
Kees and Janet ( BIG thank you). Hans and Loes; Mary C.; John E.D.; Mary Q.; Cora F.

Thank you,
 Thank you all who are with me on this journey. 
In spirit or through financial means.
Or by listening to my thoughts today.

If... you like to support me, 
please visit my SHOP for books, cards, bookmarks...
There there is also a DONATE button.

Much gratitude.
Corina


PS  I have asked for feedback on my application, which I hope to receive next week.