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 2020) 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/

• It all starting with facilitating the Life Outside the Box project with fellow members of the Dungarvan branch of Irish Wheelchair Association (IWA): http://lifeoutsidethebox-puppetproject.blogspot.com  
• Funded by ‘Create, Artist in the Community Scheme’ which is funded by the Arts Council of Ireland. See project review: https://www.create-ireland.ie/projectsubpage/aic-case-studies/arts-and-disability/life-outside-the-box/
• This project was cited in a Paper by Emma Fisher and Laura Purcell: “Puppetry as reinforcement or rupture of cultural perceptions of the disabled body” https://data.bathspa.ac.uk/articles/Puppetry_as_reinforcement_or_rupture_of_cultural_perceptions_of_the_disabled_body/7498328
• This lead to the invitation by Emma Fisher to give a talk at the first ‘Broken Puppet Symposium on Puppetry Disability and Health’ at UCC, Cork, in 2017: Blog Post “The astonishing world inhabited by puppets” http://corinaduyn.blogspot.com/2017/08/the-astonishing-world-inhabited-by.html
• My contribution lead to further invitations the following year to give talks at: Nottingham Puppet Festival; keynote at second ‘Broken Puppet’ in Bath; Puppet Place in Bristol; Cork Puppetry Festivals; Brazil (via Skype) As well as now regular lectures at the Therapeutic Puppetry course in Chile. See my webpage https://www.corinaduyn.com/site/puppetry-2/ for links to transcripts of some of these talks.

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’

• This came about due to a mentoring opportunity with Emma Fisher. Funded By by Arts and Disability Ireland. http://corinaduyn.blogspot.com/2019/06/arts-disability-ireland-connect.html
• I wrote a series of blog posts about the mentoring process, which ultimately led to the ‘Invisible Octopus’ video-poem. My last work (as I see it) to explore M.E. through my art. 
• This post has the links to all the pages in this series: https://corinaduyn.blogspot.com/2019/12/invisible-octopus-8-short-film-abstract.html Including  “M.E. and the Phoenix - rising from the ashes”
• Videos:
• Invisible Octopus film trial using the puppets: https://vimeo.com/379284424
• Invisible Octopus shadow puppetry video poem : https://youtu.be/nXlq4QiR11c 
• See also https://www.corinaduyn.com/site/poem/ which included the poem as well as video of visiting the exhibition (which never really was due to Covid)

Podcasts about my journey with puppetry: 

• Probably my most complete talk about my work: an extensive podcast (25 minutes) with images of my work. Recorded, edited and compiled by Emma Windsor of Puppet Place. 
• After the release of the ‘Invisible Octopus’ video-poem, I was invited to do a podcast with ‘Art with Amy’  (October 2020, 28 minutes): https://podcasts.apple.com/ie/podcast/accessing-art-with-amy/id1535042180?i=1000500336454

Teaching puppet making 

• After teaching puppet making at the IWA (Life Outside the Box project)  I continued to teach in my studio. Just three students at the time. https://corinaduyn.blogspot.com/2017/10/the-healing-effects-of-teaching-puppet.html
• The story of both teaching in the IWA and in my studio was selected to be shown on RTÉ Nationwide (our national broadcaster) see https://youtu.be/eIq9MkAdZO4 (7 minutes)
• This led to teaching one person simultaneously to my studio classes via video links, photo’s videos and printed documentation. https://medium.com/@Homebound/will-make-a-plan-xx-60b354a35791
• This in turn lead to supported one-to-one online courses, but I became too ill to continue with this. However, all my material is available online via a self detected course. It is now FREE to access, see : https://corinaduyn.blogspot.com/2021/10/puppet-making-course-access-details.html.  (Short introduction https://youtu.be/l0iSfFyLsLA 2.45 min)

Most recent documents and articles

• Arts and Disability Ireland Meet the Artist: http://adiarts.ie/artists/showcasing/meet-an-artist/corina-duyn/
• Article in Journal of Applied Arts:  https://www.ingentaconnect.com/contentone/intellect/jaah/2020/00000011/f0020001/art00010;jsessionid=2leaadq6qekfs.x-ic-live-01
• Arts + Health ‘Perspective’ series: http://www.artsandhealth.ie/perspectives/my-art-and-m-e-the-demands-of-a-creative-mind/
• Cork Puppetry Festival transcript of talk 2021. My last public involvement fo sharing my story : http://corinaduyn.blogspot.com/2021/07/presentation-at-cork-puppetry-festival.html
• My work has been cited in many journals, thesis, books, etc over the years. See https://www.corinaduyn.com/site/references/

Further reading/viewing:

• What is M.E.? http://meadvocatesireland.blogspot.com/2018/01/me-information-pack.html
• Moving into long term care: http://corinaduyn.blogspot.com/2021/05/my-tree-house-moving-into-long-term-care.html

• Website: www.corinaduyn.com
• Blog: www.corinaduyn.blogspot.com
• YouTube: https://www.youtube.com/user/flyingonlittlewings
• Facebook: personal page https://www.facebook.com/corina.duyn.7
• Instagram: www.instagram.com/corinaduyn

A creative life with M.E. Nationwide 2004 & 2018

During ME Awareness week in 2004 the RTE Nationwide team 

came to my house in Lismore, 

to re-tell the story which Artist David Begley captured

 in the documentary 'Fit to Fly' 
about my (creative) life with ME. 

In February 2018 Nationwide came back*.

The Life Outside the Box puppet project 

which I had facilitated, 

and the teaching in my studio

were the starting point of this update.

I am immensely grateful to the Nationwide team

for their interest, kindness and utmost respect.

And for RTE for allowing me to put the two

Nationwide features on my website/blog.

And many thanks also to all the people who were/are

part of my journey through illness.

I could not have done it without you all.

Much love
Corina

Both Nationwide features together.
  Duration: 13.36 minutes


The 2018 section can also be seen HERE 

Following is the Fit to Fly  documentary created by David Begley  in 2003/4

Funded by an Arts and Disability Awards

Video in two parts (first video might start with a black screen for a few seconds... )

Duration: 7 and 8 minutes respectively.

(*moved house in the meantime)

Birds, Puppets and Books - Thoughts about reprinting 'Flying on Little Wings'

Well, I thought I finally made the decision to reprint Flying on Little Wings  as I only have a few copies left. I looked at the cost again, and the reactions from people who own this little book. 

Flying on Little Wings book

Recently I receive a letter from a lady in Donegal who wanted to buy a copy for her 92-year-old mother. She only found second hand books for way too much money, online. I checked. Around €20 or $20 for a book which sells for €5.

I posted a book to this lady, as a gift, and received another gorgeous response, written on a beautiful card with image of a sunset at a beach in Donegal. (Made by a friend of hers, but no name given)

She wrote: “… The book [Flying on Little Wings] is a treasure… & that is how it will be each day when we see the birds!”

A new shop in Bantry called Forest & Flock, ordered 15 of these books yesterday (and my other books, which are flying of their shelves - thank you Bernie and Maeve).

Anyway. Yesterday I was Very Sure I would reprint. 

An edited version, with some new photos of the birds in my garden; which are waiting to be shared.

I created a new Design page and added the images of the old book to get me started.

Last night, while lying on the couch (a place I am found a little too often these days), I scribbled notes in a well-used ‘viewing copy’: good page; new photo; add new quotes.

I asked readers who told me over the years what this book meant to them, for short quotes for back cover.

Senator Grace O'Sullivan with her copy of Flying on Little Wings

Senator Grace O’Sullivan wrote: “This precious little book is one of my treasures. It sits on my bedside locker where I dip in an out of it for solace.”

Another acquaintance was going to ask her brother “as it helped him so much at the beginning stages of his healing.”

I feel responsible to continue to be the messenger of the wisdom of the birds. 

The book came about from a time in late 2010, early 2011 when I needed (again) to re-evaluate how to continue, how to find ways to be well. The birds told me. For example: ... to be brave, even when you are vulnerable.  I created a handmade book, which was later printed as this 10x10cm little book, small enough to carry nature’s wisdom in one’s pocket.

page from Flying on Little Wings

So, reprinting was going to happen. 

Phyllis who is helping me in the studio as my Creative PA over the summer, looked and listened to my plans this morning. We looked at the new bird photos I had. She listened to the stories I have about these birds.

She is all for a new book. But a Totally New Book. Intertwining my life with the birds in my garden. Which are totally and utterly linked.

So, reprint?
Or a new book?

My mind has been busy with creative ideas since this communication.

My mind also acknowledged the stark truth of life with M.E. at present. In all reality I have not been well enough to do a whole lot else than engage with the bird life outside my windows. At times it is even a challenge to hold the camera still enough to take a picture. The fact that I thought to be going back into the studio and create these amazing new puppets, telling the story of M.E. and Disability, are too far out of reach at present. I hope those day will return. For now I do go into the studio for a few minutes most days, but I have not created a whole lot to show for. Other than finishing the Butterfly Puppet (attaching the wings). 

I have to concede that I am actually not as well as I would like to be.  Not something, which I happily admit to. It makes me sad.

Makes me sad that my creative brain has awoken about ten weeks after my return from the UK, but my body has not yet caught up.

Lying on the couch earlier, I had to face that horrible fact.

But, I can write (again).

Write about the birds.

Perhaps about the Puppets too.

And about the truth of living with M.E. and Disability. In a much more open and honest way that I have perhaps done in the past in my books.  I often like to focus on the good, the positive, or shroud the challenges in gently poetry. Maybe it is time to ‘come clean’. And describe what twenty years of living with M.E. has brought me. Where I am at present. How I am still fighting the system. Fighting to be heard and supported.

Perhaps the book in the making is about all of the above, with the help of the birds – who still teach me so much, and the help of my puppets, who in a funny way taught me to speak up.

As for Flying on Little Wings (second edition), well, if I can miraculously raise half of the reprinting cost (total cost about €1300), I will reprint an updated version.

Alternatively I can make it into an e-book, but it surely does not have the same appeal as the little printed book.  (The size, shape and full colour does not lend itself to the print on demand format.)

So, if you feel strongly about the reprint - please let me know and I will set up a funding page.

And Yes, I will write another book. I was heading that way anyway, I just didn’t know the birds would be in there too.

Flying on Little Wings indeed.

Thanks for listening.

If you like to get your hand on one of the remaining copies of Flying on Little Wings, please see my Shop

Hiding in my writing cave

I am about to hide away in my 'Writing Cave' for the next while, as I have two Art applications to fill in, and a paper to prepare for the Broken Puppet Symposium.

One application is due this Thursday.
Ahhhh.
And I only found it yesterday, but it seems to right up my street: "Arts Participation". So am going to give it my best.
The other application is due next week. It is short, and almost written: "An expression of interest for Art Commission for the New Children's Hospital in Dublin."
Then before the 2nd August I have to write, and prepare for the talk at the Puppet Symposium.

papers to write, applications to fill

All in the line of progress.
All connected!

And didn't I write the other day that you can make anything by writing...?

So, if you don't see much of me, I am most likely hiding in my writing cave.

But first today, I am going to spend an afternoon with other creatives.
Painting.
Something I have not done for years, (painting I mean), but for some reason the wish to paint came up during my visit to Holland.
I try to listen to those whims!

Getting my 'travel basket' ready for the painting afternoon

See you all when I can.
Be Well!

you can make anything by writing

I am still out of sorts

but sorting myself out

... these were the words which appeared on my diary page this morning. I am still out of sorts, but sorting myself out.

I left it at that.

I seem to be still in the process to re-establish the me in my life, after the busy and at times confusing few months. 

Clearing helps. Clearing my garden was so powerful. And am now in the process of more tidying in my house. Again... An ongoing project really. 

I seem to have the need to move things around (and in the process, moving energy around...) 

And to dispose of stuff. 

Tidy my books. My desk. My studio. My space. My head.

Johhny Dwyer overseeing the tidying of my study.

I know that this is all in preparation for good things to come.

I also cleared some people out of my life (metaphorically speaking of course) and invited some others to join me on my journey. Mostly creative people.

So, while I tidy up my life, I am getting ready for new adventures.

Creating.

Teaching.

Writing.

To reflect on C.S. Lewis's wise words which I have written on Puppet Johnny Dwyer's travel box... "You can make anything by writing."

Writing words in my diary, sharing my private thoughts which seem to flow from my pen onto the clear space in front of me. Sharing the challenges, the joys, the hopes and desires. To make plans. All in the safe place between pen and paper. I never stop marveling of the power of this excersice.

Creative ideas come into focus. But also life in general.

I can make anything by writing.

"You can make anything by writing"
C.S. Lewis
Cover of Johnny Dwyer's travel box

Be well my dear friends.
Wishing you a lovely weekend!
And maybe... find a lovely notebook and most comfortabel pen, or embark on a space clearing exercise... a few minutes at the time.

Tired

These are just a few short observations/ poems from 2001, as featured in Hatched Re-Hatched.
However, I still moments in the present time in which I can relate to them, ...  more than I wish to acknowledge. However, the emotion and the wisdom surrounding this has changed. The experience remains raw.
I know I am not alone in this...

Be well my heroes.
Hang in there.
There will be better days.
I promise.

HEAVY WEIGHT 25 January 2001

Confrontations 
with my tired body
Lowering my head
just above
the bowl of porridge
my hand
and spoon
thereby
greatly reducing 
the distance
have to travel 
to my mouth

page from Hatched (re-hatched) by Corina Duyn 2006

WATERSHED
15 March 2001

Nearly in tears  
deciding
if taking a shower 
would be 
a good use
of energy 



DUCK OUT OF WATER 
23 September 2001

Negotiating 
door saddle 
kind of 
tired

Snapshots books arrived. Happy days

... another book-baby safely delivered into this world

It is always a special moment when a book I have been working on for months (or years) arrives at my house.

Yesterday, when I was on my 'holidays in my front garden' (which was not much of a holiday as it rained, and was very cold- we even had a hailstones shower), courier Colin arrived with one heavy box from City Print in Cork.

And I could not wait to have that private moment to open the box and see how my book-babies turned out.

I must say- if I can be a proud mother that they turned out just beautiful.
They look good.
They feel good.
The pages are clean and clear.
... with a slight imperfection, but none of us are perfect...


Printer Ronan took pride in getting my books to look as good as they are. He had told me earlier: "...on a general note, well done for compiling such a book - it’s really well done." 
We had some funny communications. As the book is in both English and Dutch he responded to an email in Dutch- having used Google translate.
I love those little moments of fun.

Thank you all at City Print, you really are a dream to work with.

It was an interesting project to work on- the initial idea was much simpler. It took on a life of its own. See links below to read more. It is amazing to have received orders for this very limited edition book from as far as Canada, UK, Holland, Ireland, and even Australia. Thank you all!
(book order will be posted early June, after my family have had the first viewing during the reunion n Holland)

Snapshot books have arrived safely into this world

Back of Snapshot books

Further reading and links

• A reflection on the birth of my previous Book-babies
• Snapshots- a look inside
• Order your own signed copy HERE. 
• City Print in Cork