Showing posts with label M.E.. Show all posts
Showing posts with label M.E.. Show all posts

Wednesday, May 18, 2022

The Power of the Puppet lecture video

My apologies for rarely showing up here. I do write occasionally a short reflection on my Facebook page: https://www.facebook.com/corina.duyn.7

Today there was a longer post, which might be of interest:



“The Power of the Puppet” Video-Lecture is now available on https://youtu.be/j5cFBtk5Oao  High resolution. In English, with Spanish and English, and Dutch subtitles. ** 

Or on Arts+Health website : https://www.artsandhealth.ie/videos/the-power-of-the-puppet/  with this introduction:

 “The Power of the Puppet is a video lecture by Corina Duyn documenting her 23 year long creative journey through chronic illness. The lecture focuses on her puppetry work.

Corina trained as a nurse and social care worker in her native Netherlands before moving to Ireland in 1989. An artist and puppet designer, Corina has been exploring the internal landscape of illness in her work since she was diagnosed with Myalgic Encephalomyelitis (M.E.) in 1998.

This video was initially created in 2021 for the Puppetry Therapy Diploma at the Muñecoterapia in Chile where Corina’s work forms part of their lecture series.

Here is a blog https://corinaduyn.blogspot.com/2021/09/M.E.creativity%20.html  with links to most of Corina’s work for those wanting to know more about the art and story in the video.

In English with Spanish (Translated by Myli Pincheira V. ) and English subtitles. Dutch subtitles added, translation by Rob Wijbenga. With thanks.

Thank you Emma from artsandhealth.ie for embedding the lecture in their video archives. And the continued support from Puppets InTransit  Andrea and Polo. And Emma Fisher for helping me to Create the video.

The lecture is 49 minutes long. My voice and images of my work, mainly that of exploring ME through puppetry. All in small sections so can be watched in snippets.

** For those with ME and extreme sound sensitivity, there is only one section with music in the “Life Outside the Box” puppet project I facilitated in 2015. This section is 14 minutes in, lasting about 4 minutes.

The rest is just my (soft) voice. There is no fast moving imagery, except briefly in the “Life Ouside the box” video.

As there are subtitles throughout, the sound can be turned off completely if you wish.


(Image is screenshot of the video - puppet in a wheelchair in the garden)

Sunday, September 5, 2021

23 years long creative history living with Myalgic Encephalomyelitis (M.E.)

My dear followers.



At the end of 2020 I felt strongly that the ‘Invisible Octopus’ video poem was my last work exploring my then 22 years of life with the disabling chronic illness Myalgic Encephalomyelitis (M.E.). 
After my move into full time care - April 2021 - and several online lecture events, I made the decision that it is time to retire from public engagement regarding my life and work. Including to take a step back from advocacy for better care and understanding of this so much contested illness. 
It has been a long, continuing, journey.


I truly hope that over the years my work brought an understanding of hidden illnesses to a wider public. As my journey has been well documented over the years, by myself, but also by many others, I hope that my work will live on. 


This blog post with links to my books, art, talks, podcast and videos has been created for this purpose. I have broken up the sections to reflect on significant creative times. So you can just go to the section you’d like to read or hear more about.

EDIT April 2022: A final lecture video has been made mainly about my puppetry and disability related work, initially for  Muñecoterapia, Chile. It is now made public https://youtu.be/j5cFBtk5Oao it has English and Spanish subtitles. Thanks to Emma Fisher and Myli Pincheira.


To continue to access my creative mind I have gratefully accepting support from Waterford Healing Arts Trust. (WHAT). On a one-to-one basis I am gently exploring ways to create in the comfort of my room at Signature Nursing home. I am also doing some personal projects like my scrapbook photo album.
Many, many thanks to all whom have supported me. I could not have done this without you. I will update my blog, or my personal Facebook page (link at bottom)  if there is something I like to share with you. 
Be well.
With much gratitude. 

Corina, September 2021



 Early years, and Fantasy Folk




Always have been creative in one way or another. I made dolls clothes, drawings, messed around with clay. At the age of ten I made my first doll. Age fifteen, my first puppet. Read more https://corinaduyn.blogspot.com/2021/08/it-was-beautiful-experience-to-hand.html

These two pieces were among many experiments in doll making during my teens while still living in my native Netherlands. During my late teens and until age 27, I studied and worked as nurse and social care worker. I remained creative and made various dolls and puppets. 



Moving to Ireland in 1989 saw the start of my creative career as full time Doll Artist with my company Fantasy Folk. This little sculpture from this time and even made it onto tv:  https://corinaduyn.blogspot.com/2021/08/it-happened-on-late-late-show-1993.html A few other pieces of this era can be seen in the first slideshow on my webpage https://www.corinaduyn.com/site/creative-mind/ which chronicles my art. 


Shortly before illness changed my life I did a very big commission for Waterford Crystal: https://corinaduyn.blogspot.com/2016/11/waterford-crystal-blast-from-past.html

I also did some teaching in a group home for teenagers. It was there that I became fully aware of the immense power of the arts. 


Illness changed my (creative) life (1998)





I became ill with Myalgic Encephalomyelitis (M.E. - in some countries unfortunately referred to as Chronic Fatigue Syndrome CFS, or ME/CFS ) in summer 1998. It totally changed my life, including my creative ability and output. I could no longer sculpt, hold my tools, or have the energy to do anything for longer than a few minutes. Yet my creative mind would not stop. As a result I unwittingly created a visual diary of my utterly changed life.


  • Images from the early years of illness can be see on my art page: https://www.corinaduyn.com/site/creative-mind/ Initially the theme was eggs, birds, and flight. 
  • In 2003 Artist David Begley recorded a short documentary about my creative life with illness: ‘Fit to Fly’ see https://www.corinaduyn.com/site/videos/ or YouTube. Funded by Arts and Disability Forum.
  • A version of this was also recorded for RTÉ (our national broadcaster) see https://youtu.be/eIq9MkAdZO4 . They came to film again in 2018. These two segments are in the one video. With kind permission from RTÉ.


Books and art



  • In 2006 I wrote, designed and published my first book ‘Hatched - a creative journey through M.E.: https://www.corinaduyn.com/site/hatched/ The book is out of print but can be read for free, see page for link. It has very short poems and images of the first seven years of illness.
  • Katie Lincoln recorded the accompanying short documentary ‘Flight Path’  see https://youtu.be/6Hc1MPOHK64 This project was funded by Waterford County Council Arts Office.
  • In 2009 I wrote, illustrated and published  ‘Cirrus Chronicles’ https://www.corinaduyn.com/site/cirrus-chronicles/ a local fairy tale for all ages. Supported by an Artlinks Bursary.
  • In 2011 it created a tiny book called ‘Flying on Little Wings’ https://www.corinaduyn.com/site/little-wings/ with images and wisdom from the birds.
    • Both can be read via links on the relevant webpages.
  • The biggest book project I undertook during 2013-2015 was my Artist Book in a box: ‘Into the Light. (http://www.corinaduyn.com/site/into-the-light/ It was a response to doing a year of Disability Studies, my subsequent reading and research. The format - loose page in a box, came about during one of my retreats at Dzogchen Beara. 
  • This project was made possible through a Rehab grant; a small publishing grant from Waterford Arts Office, as well as a very successful crowd funding. Many thanks to all involved. Book Launched by Michael Harding, and Sr. Stan.
  • Some of my Art created during those years can be found in the slideshows https://www.corinaduyn.com/site/creative-mind/ When able to sculpt again, I started using roots. Perhaps depicting a sense of being more grounded in my reality.


Puppetry:



From 2015 my creative life was invaded, and dictated by puppets. It transformed my life and art and am forever grateful!

In a nutshell: https://www.corinaduyn.com/site/puppetry-2/



I explored puppetry, disability and health in more detail. This led to the creation of The Girls, Póilin, ‘Dance of Life’.

Videos:



  • The Reflection Girls https://youtu.be/FrEW2vCDYmA exploring the reality of my disabled body through my reflection in the mirror.
  • Póilin came about to explore a ‘wheelchair-top-puppet’ as I could no longer handle my marionette puppets. This is a video of Póilin and our Travels to the UK. Póilin’s travels with M.E. https://youtu.be/cYK3cAjbDwU
  • I created a small set of two animation figures which I called the The Dance of Life, however I have not yet been able to create the full video. 



Exploring M.E. Through the ‘Octopus’





Podcasts about my journey with puppetry: 




Teaching puppet making 




Most recent documents and articles





Further reading/viewing:




Saturday, May 22, 2021

My Tree House - moving into long term care

 Soo much to say. I tried to make it as brief as possible.

IN SHORT


After two years of discussions with friends, family and in my own mind, I made the very big decision to move into a nursing home. It has been the right move but it certainly did not come easy.


Signing up  


As you might know I have struggled over the past three years to get adequate and sufficient care to enable me to continue to live independently at home. See ME Advocates Blog for the back story.


The inadequacy of care landed me in emergency accommodation, a day after Christmas 2018. It was not a good experience. I vowed this would never ever happen again. A few weeks later I ended up in hospital and the conversation about what/if/when I could no longer cope at home began in earnest. My main drive to engage with this very uncomfortable topic was to be part of the narrative. If I had to move out of my beloved home, I would be the one making that decision and choose my location.


NO CARE AGAIN 


In mid-December 2020 I was facing an emergency placement again as the care agency no longer had carers available in my area. My two amazing carers had resigned from the agency, one for a permanent job and the other for personal reasons, shortly before. A frantic hunt was conducted by Disability Services to find a replacement care agency and keep me at home. On the 22nd of December I heard that I would have care from the 23rd by a new agency.


The stress of this was immense. More than I can express in words.


It brought me to apply for the Nursing Home Support Scheme, which if / when I had to move out of my home, would provide me (if approved) with financial assistance. The hardest application I have ever made in my life.


The continued stress of being dependent on care agencies to provide suitable carers, intensified during the past few months. There was absolutely no consistency in who came into my home. The more I expressed to the agency that consistency was an absolute necessity within the challenges of living with ME, the more I was responded to with “you don't have to keep telling us that”. But they didn’t listen. The more I expressed how some carers were a perfect match to my needs, the more these carers were removed from my schedule. This brought me to tears. Daily. The main topic of conversation with friends was about the bullying attitude of the agency. Even writing it now, brings distress. I could no longer correspond with the agency, as I feared that the most suitable carers would be removed further from my schedule.


BUT THE UNIVERSE WAS WITH ME 


Initially my application for the Nursing Home Support Scheme was declined. Understandably, as the application in no way reflected my circumstances. Is it written for the over 65’s and/or those living with dementia.

With the help of a friend I wrote an appeal. It took weeks to write and edit as I am slowly losing the ease to write. (This narrative here has been weeks brewing in my head ... but I need to write it ... for you, for others in my situation and for me...) My appeal was accepted. Within days actually. (Mid-April, I think it was.) 


RESEARCH


Over the preceding months I had researched many care and nursing homes in two counties, as well as independent living situations. I kept coming back to one organisation which they have four locations with one in Waterford city. Their ethos spoke to me. The HIQA (inspection) report was positive. But what got me most was that this location was a renovated old hotel/Manor House. The photos I researched on Google showed me that there were many trees.

Trees means birds...!


FAST MOVES


After approval I rang the nursing home and had a very positive conversation with the manager Anne. She was very aware of the challenges of relocation, especially at a young age (59). She listened and provided me with answers which brought some peace to my frazzled mind. She suggested I needed to come and visit.


A day later a friend who was aware of the need for proper care, offered to fund the trip to the home by taxi. A few days later my friend Pascale and I visited the Nursing Home in Waterford. An hour from my previous home.

We were greeted by Anne, and shortly after, the resident cat welcomed me and made all my worries ease. I laughed from relief. We sat under the tree I now see from my room. This memory makes my legs tingle. All was right at that very moment.


The cat.


While in the garden Anne pointed to the room she would show me. I said “that IS my room!”

And it became to be.

A week later Anne came for a home visit. To do the intake, but also to see who I was in my own environment.

A week later I came to my room for three-weeks respite.

But, it all felt right. Well, most of it. Funding came through a week after I came here. I stayed. My room felt like a Tree House and I named it as such. 

I was home. 


Tree House


PREPARATIONS 


Over the past year I had been sorting my house (See previous posts ). Probably in anticipation of this move. I had such a need for simplifying my life. I felt no longer able to manage my home and surroundings without consistent care. I struggled soo much. Family and friends expressed concerns. I realise now I was continuously trying to adapt my home, garden and studio to make being at home possible. It wasn’t. It isn’t. I tried. For sure. Friends have since told me that I was ‘imprisoned’ in my bedroom, and ‘shackled’ to my house. 


Two main reasons for the move were the ever-increasing demands of this illness ME (Myalgic Encephalomyelitis), as well as the failings of the care system to keep people with illness or disability under the age of 65 safe in their own environment. In charge of their own care with all the support required.


THE NOW


I am sad. 

I am happy.

I am grateful that I took the initiative to stay part of the narrative. 

I landed in the best possible place for me, right now. Yet it is a bizarre twist to never have a normal home again. Ringing the County Council to cancel my rent, my home, a few days ago was incredibly distressing.

But here I am supported to remain me. To find ways to re-gain my creative spirit.

I am valued for who I am. My views and questions listened to and respected.

I have the most beautiful room with a big window and watch nature from my bed.

I no longer have to manage a home.

I can go outside for a few minutes a day into the big spacious courtyard and just enjoy being in nature. And not have to organise maintaining my once so beloved garden.

I have access to 24hour care. I am left in peace when I need it.

My room is decorated with pieces of me. I tell myself that I have a lovely tiny apartment which happens to be in a nursing home. It makes it easier on the mind to deal with the immensity of this move. And the seemingly unsuitable location.

Carers tell me they love coming into my room as it is peaceful.


I am home. I am safe.  

Something I could no longer say at my house.

The universe came together and gave me my Tree House.

View from my bed


Thank you for having joined me and continue to join me along this adventure. This never-ending story. 

Thank you all who made this move possible, especially my friends who are sorting out my house without me having to witness the destruction, the de-construction. It would be much too stressful.

Thank you to some amazing carers and staff here who have made me feel welcome and so supported.


Care and support 


Corina

The Tree House


(Address emailed on request)



P.S.

This was an incredibly difficult decision to make. One which was years in the making. Please respect my choice. And try not see it through your eyes. Thank you.



ADDED 18 NOVEMBER 2024: The most recent post on life in care is in connection with the publication of ‘In bed I cut words’ see https://corinaduyn.blogspot.com/2024/10/the-making-of-in-bed-i-cut-words.html and https://www.corinaduyn.com/site/in-bed-i-cut-words/


The previous post was written on my 600 days (2022)  in care https://corinaduyn.blogspot.com/2022/12/six-hundred-days.html and Nursing Homes Ireland Awards (2023 https://corinaduyn.blogspot.com/2023/11/nursing-home-ireland-care-award.html 


A letter I had written was read out on radio. See RTE Radio segment July 2025: https://www.rte.ie/radio/radio1/clips/22527468/ see also https://corinaduyn.blogspot.com/2025/09/my-creativity-archived.html



Monday, September 28, 2020

‘Invisible Octopus’ - the demands of a creative mind

Dear friends and family


I truly hope this finds you well in this peculiar year. Who could have predicted the challenges we all had to face? For me not a lot changed due to Covid-19, and yet many changes are happening, including the direction of my creative work.


‘Time’ by Corina Duyn


The demands of my creative mind


The restrictions on movements enforced on many were for me not a result of the pandemic but due to an increased level of illness. However, as has been apparent throughout this now 22 year ‘adventure’ of life with Myalgic Encephalomyelitis (M.E.) my creative mind demands its wishes to be fulfilled. No matter what state my body is in. Most of the time this is a blessing. At times it is a challenge. Even peacefully looking at the birds outside my window manages to infiltrate my creative mind. All experiences culminating in the ‘Invisible Octopus’ project and ‘Ribbon of Light’ exhibition.


All things puppet 


After facilitating the ‘Life Outside the Box’ puppet project (2014/5) I was invited by Dr. Emma Fisher to share my experiences at the first ‘Broken Puppet Symposium on Puppetry, Disability & Health (UCC, 2017). There I entered the astonishing world of all things puppet. Since that time I delved further into using puppetry as a personal exploration of illness and disability through research as well as making new work. I have been given amazing opportunities to lecture in Ireland, UK and via Skype (now Zoom) in Brazil and Chile. What an honour.


Last year during a spell in hospital I communicated with Emma, who has a PhD in Puppetry and Disability if she would guide me exploring more accessible directions in my work.


Invisible Octopus 


We were successful in our application for the Arts & Disability Connect mentoring Award 2019. For me it was the start of an incredible journey. Although the aim was to write a script for a puppet film using my existing puppets, I learned an awful lot more. It turned into the most profound exploration of life with M.E. I have ever experienced. There was no hiding. It was raw. It was beautiful. And continues to be. (See: Invisible Octopus links to articles )


The word ‘shadow’ uttered during the first mentoring meeting triggered a the memory of a story I had written a few years ago: ‘living in the shadows of an Invisible Octopus’. In a vert short time Octopus became the metaphor for M.E. ... M.E. as Invisible Octopus/acting as puppeteer/ keeping me upright/ or making me stumble at will/ inflicting pain/challenging my brain/ its crushing weight taking my breath away ...


A year ago I had no idea how much this one word ‘shadow’ would be profoundly influential on my creative direction. 






Shadow puppetry


Yes Emma suggested using shadow puppetry as an element in my proposed film. She introduced me to its various possibilities. Yes I did very much enjoy playing with images on an overhead projector. Loved it so much that I sourced a projector for myself. But puppetry for me was still my puppets and the fabric octopus I had created (with help). The projector remained an obstructing in my study. I hadn’t realised the full force of this incredible and accessible art form until very recently.


A few months ago I finally started cutting paper images I wanted to play around with on the projector. Lying in my recliner I cut various tiny paper-me’s, as well as my wheelchair, the tree in my garden, and a huge variety of birds. Hands, houses, anything of interest was made into a potential shadow puppetry image. The fun! I was having so much fun with this work. And I could do this without having to ask and accept help.


I shared the early explorations on my Facebook Art Page  and they were received with so many astonishing positive and encouraging comments. From friends and stranger, from people with no prior experience of shadow puppetry to professional practitioners. Wow! 


I hit a nerve with these images. Both for myself and for thousands of others. Wow.


‘Invisible Octopus’ Poem


Over the months I created images depicting my life: the good, the bad, the challenging, and the beautiful. I also edited the poem under the guidance of poet Dolores Ronayne. This poem was initially written to function as narration for the film script. The film was not going to be made as intended. I simply couldn’t do it. Even with help it was an impossible task beyond my body and mental capabilities.  But the poem could work as a stand alone piece....


Working on it and sharing abstracts I realised the poem had power. In combination with a selection of shadow images it became a force beyond any of my previous work. In an unintended twist I created a short  Invisible Octopus Video-poem I had a voice recording of my poem - I had 12 images chosen for the exhibition - and suddenly, in ten minutes I had a video poem...


It took persuasion from friends to release it into the world. As I really had wanted to make this a perfect animated poem one day. But had struggled to do so. This could take a year, or more. The poem - the Octopus - wasn’t going to wait for that.


And I came to accept that the way this 2.12 minute film came about is a much more realistic representation of my reality. My life isn’t polished and perfect. It is raw and challenging. I am immensely grateful for the worldwide responses it received and continues to receive. 


Exhibition 


Last year I was offered an exhibition at the Blackwater Valley Arts Centre to highlight the power of art during illness. I accepted. But since have tried various times to cancel this opportunity. (Deep sigh while I write this). I had suggested a few months ago to offer it to fellow artist Anna Moore who also creates from the experience of illness. Done! But she suggested to do a shared show. ‘Ok.’


I thought it to be a great idea and felt there was little for me to do. I was wrong. An exhibition still requires me to write, and think, and sort, and plan, and do more than I really am capable of doing. For all the help I ask, buy and receive, nobody can be my brain... 


What a learning curve. 


Thinking about the exhibition brought a huge sense of unease. After a lot of scribbling about it in my private dairy, I realised that most of this unease was because I had to create an exhibition in a world I was no longer part of...

Ouch.




Alien world 


The world beyond my home and garden is a place I now so rarely inhibit. I am pretty much housebound. The world I am comfortable in and can navigate is that inside my home with the support of my carers/PA, and in cyberspace which I can visit in my own time. Having to think about the practicalities of an exhibition in a town half an hour away from here, in a space I have never seen, became something my brain could not comprehend. No matter how much my co-exhibitor does, there are still decisions I had to make. The logistic eluded me.


I had anticipated to just show older work based on Into the Light. Easy.  But people were commenting on how they would one day like to see an exhibition of my shadow images...  So I followed through on that. But, to be able to make my simple imagery taken on my phone suitable for printing required work I could no longer do. I decided to employ the skills of graphic designer Red Heaven Design. But even with that I still needed to make decisions on what, how, where, text, scale, quantity, etc etc etc. 


Together we created a limited edition of 100 accordion/concertina style poem booklets, a limited edition of 12,  A4 prints - to be shown framed at the exhibition, and available as unframed prints from my website. As well as a series of A5 postcards also from the same 12 images, with poem abstracts at the back. There will also be a large A1 print of the poem at the show. The poem publication was supported by an Artlinks Bursary.


The final visual edits were shared with me while I was very ill in bed. All a very surreal experience. 


Last exhibition of my work 


So, I have decided and gratefully accepted that this is my last involvement (at this scale) in an exhibition in a public space. I can not do this. Although you might say: ‘You did it’. Indeed. But it is all more that I can chew at present. I accept that my world is changing. I am ok with that. It is a simpler world in which I am comfortable. Because I feel this my last exhibition, I wanted my work to be shown in the best possible way.


I joked to a friend the other day ‘if people want to own a piece of my work they better buy something soon as this is the last exhibition’. He thought it to be a good tagline.


So, if you like to own my work please visit our exhibition in Fermoy, Co. Cork which is on from the 4th October till the 29th November, or visit the webpage for further details:  Ribbon of Light Exhibition


I do hope to see the work on display for myself before the first hour of opening. This is made possible by the kindness of my amazing carer/PA and a dear friend. If I get there we will make a little film. 


Full circle


A few days ago these words escaped my mind and mouth: “with Invisible Octopus my work is now complete.”

I can with all certainty say that this does not mean I will stop creating - I can’t - but all my 22 years of creative work to explore and explain my life with M.E. culminated to this very moment. I will continue to share my creative explorations via social media platforms, for sure.


Many, many thanks to all of you for continuing to join me on this incredible unplanned journey.