The healing effects of teaching puppet-making

There is so much in my head that I like to share with you. Thoughts about healing, recovery, miraculous recovery, challenges, health, or not as the case may be, but somehow all roads lead to the beauty of sharing the art of making puppets.

... do I know you? ...
(Pascale De Coninck with puppet-head by Louise Clark)

Longing

I so long to be well enough to get up in the morning with ease, go to my studio, or to my desk and sculpt, sew, write, share, teach. Or to be out in the garden and get rid of the weeds- but leave anything which insects and birds might like to nibble on over the winter.

The other night after another trip to hospital -this time for a planned appointment, not an unplanned trip in an ambulance - I was too tired to have a good night sleep. One of peculiarities of M.E.(ME/CFS). There is a fine balance between being tired enough to go to sleep, and being too tired. Anyway. At some point I got up again to get something to drink, and I picked up my notebook. I wrote:  " ... All I have left in me are tears. I so want to just get on with my life.  A miraculous recovery overnight is VERY WELCOME. Whatever way it comes.  Thank you."

The intriguing roads to recovery

There has been so much in the news about ME lately, about very dodgy suggestions that recovery is possible, as long as you follow some weird science. Well, I am absolutely delighted if people find ways to beat illness, in whatever way, as long as people are not being exploited by quacks along the way.

I always felt that I would recover in my own time, in my own way. Through a positive mindset, understanding nature's wisdom, and be involved in creativity in all its ways. My mantra for years was "I write myself into wellbeing". And writing most definitely had a huge impact on learning to live well with illness.

I certainly have improved much from the early years, see Hatched- a creative Journey Through M.E. (1998-2006), but I am not as good as I was a decade ago. I am hopeful though, that my current adventures with all things puppet will eventually bring me closer to a level of wellbeing. Again. I am hopeful. And almost convinced.

The puppet-related adventures definitely bring me joy, and energy, 

which is not exactly a physical energy, but energy at a different level.

even the start of making feet are already showing the
different characters they are going to be

So, ... teaching puppet making in my studio

As you might know I have started to teach in my studio. One and half hours a week. Anne's Japanese Dancer (see link below under image) was the first puppet/doll. The second course with three students started almost two weeks ago. And what fun! And, I am getting better at setting my personal limits, and devising ways so my students can work further on their puppets in my studio, in their own time (or at home).

Sharing all I have learned about making puppets over that past 4 decades is enjoyable. But what intrigues me most of all is what puppet making does to the maker.  In my classes I am not overly concerned with the perfect face, but what character emerges from a block of clay. From the hands of the maker. From the inner thoughts of the maker. 

It is a truly wondrous journey.

Jackie O'Flynn working on her puppet-head

Teaching via post and cyberspace.

Greg Crowhurt's Johnny Toes-
 to be made as puppet

During a communication with Linda and Greg Crowhurst a seed was planted in my head to see how I can help Greg to bring his Johnny Toes character into puppet form. Some amazingly powerful moments have occurred. Of finding ways to teach Greg via email, photos, images, written instructions. To find ways to not expose Linda to the dangers of chemical smells of glue, or to sounds from skype conversations.
The experience the heartbreak of the limitations of living with severe ME put on just the person living with this, but also the carer. My heart goes out to them and to anyone living with the incredibly challenging circumstance.

The beauty of helping Greg to fulfill on his dream, is also how many others are getting involved. Offers of fabric for the clothing, and the weaving of the strap for his guitar.  To making suggestions to limit the challenges which undoubtedly will occur along the way.
I put a box together with all that is required to bring Johnny Toes into being. See a wonderfully excited Greg when the box of goodies arrived at his house. (see link below).

Teaching, and sharing, the art of puppet making, might not be my miraculous recovery, but it surely is bringing a different kind of energy into my life. A goosebumps kind of energy. 

Who knows where it will lead.

Anne stopped by to show us Mia's kimono

My own 'girls' are starting to take shape
and seem to be having a chat...

Further reading and links

• Follow Greg and Johnny Toes's adventures , including how others are getting involved, when The Box arrived
• Interested in doing a course, either in my studio or online/post? Please contact me
• The Dance of Puppetry and disability

A wonderful life, a life full of wonder

A post I wrote a good few weeks ago, but never saw the light of day.

So, here it is...

Sometimes life it just wonderful.
Wonder-ful.
Full of wonder.

Facebook
Many of you know that I was never much of a fan of Facebook, but I was 'tricked' back into this strange world to fundraiser for Into the Light just over two years ago. The page wage was managed for me. I just suggested what could be written on it. I stayed away from this scary place for a god while. But, alas, eventually I wrote a few words myself, and added pictures, and then even wrote on my personal page, not just my Art page ... I know...

But, as life moves on, I have moments when I actually like facebook...

Being part of that world, has brought me in contact with many other creative, I would not have met otherwise. I don't get out into the real world all that often.
It led to giving puppet making classes.
It led to some amazing (many private) conversations, about birds, and books, and art.
About healing, and illness, about challenges and gratitude.

Goldcrest

Birds and books

A photo of a little bird which had flown against my kitchen window. The photos of the bird brought a discussion about what kind of bird it was, many got involved.  It also led to a conversation with a fellow nature lover, also living with M.E. Selina is currently in Scotland, and we "visited" each other's gardens, through sharing images, taken from our homes.
I loved that!

Also, recently I was contacted by a lady who's drawings I had posted in a post last year about Severe M.E. Linda had come across  a version of this post on the Disability Arts Online blog. Linda and her husband Greg, then found themselves exploring my website, and made contact with me on facebook.  We are both creatives, like to write, love the birds, identified in such similar ways in terms of the experience of illness. Linda's symptoms are much more severe. Being grateful to have seen some light in my journey, I decided to post a copy of Into the Light to her. Just felt right.  As Hatched  is about my first eight years of illness, when I was still pretty shook, they downloaded the book from my website: Linda:"I really am moved by the words and pictures and they touch my own experience."

When Into the Light arrived at their doorstep, we were all catapulted into a place of wonder and excitement.  Linda was awake during the night and felt compelled to write her thoughts on the book. Greg got inspired to create a beautiful page on their Stonebird Website. I felt overwhelmed by their kindness, and what the creation I had made, made such an impact on people I will most likely never meet in person.

“What we love about this in essence deconstructed and elegantly transformed book, is how it brings accessibility, where an ordinary book is too heavy, too complex and often too many pages and too many words to manage. 

The imagery and photography convey so much to me personally – they elicit a recognition and deep resonance in my heart of my own experience, yet bring hope. They seem to bring a multi dimensional aspect because it resonates so deeply with what I know myself also from my own very severe illness and helps me recognises a bond of knowing between us, carried through the messages, words, imagery, beyond what is physically seen – the gift of not aloneness, the comprehension of pain, the need to surrender to the experience yet not to give in, the triumph, the resilience of the human heart and spirit despite intense physical suffering.” (Linda Crowhurst - See more at the Stonebird website)

What can I say.
It has been an amazing week.

... And to top it all, at the very moment I was writing this I heard a motorbike stop outside my gate. Followed by a knock on the door. The driver has seen one of my prints I have displayed on the wall...

'Into the Light print:
'The blessing for which we hunger are not to be found
in other places or people.' John O'Donohue  - Anan Cara

We had a lovely chat and he went away with a copy of Into the Light .

So, Facebook can be full of wonder, 

but having this unexpected visitor equates to a wonderful life.

Puppetry, as a reflecting on life with illness/disability

The Two Dancer Puppets for the "Reflection" project are on the go since 2013, but I restarted working on them about two months ago. Read more about that HERE.

Puppet making has many, many steps. In terms of the creative process, but also emotionally....

If I like it or not!

'Hanging out'

Making

Sculpting the heads, the hands, the feet/shoes. Assembling the bodies. And for this project, of course there is two of everything. Herself, and her reflection... (A disabled puppet sees her dancing reflection in the mirror)

Broken bodies

Seeing these bodies side by side. In all their nakedness, a friend commented on how this also represents my story. The story of illness, of disability, of fragility, of a broken body in a way.

How true.

'But', I said'. 'They will be dressed, of course!'

'Of course.'

But isn't that a story in itself. 

The assembling of the bodies, the painting, dressing up and all, covers up the reality of a fragile body. A puppet body which can not function without support. Support of strings, and glue, and wires and a cross to manipulate movement. My body, which can not fully function without the support of mobility aids, of society, of friendships...

Putting it all together

Last week I started painting the heads, hands and shoes.

A process which is divided up in four stages. Two different undercoats. One 'wash' with watercolour paint, and finishing off with varnish. Before being attached to the body for good.

box of painted body parts, paint, brushes etc

The puppets became little beings.

I just love this photo of the puppet (its reflection) showing off the new socks.

I think there is a sense of fragility in it. But also a huge sense of pride.

I think this is one of my favourite images.
Fragility.
And pride.

In the last few days I have started to work on the clothing.

Clothing cut, and yet to be sewn and fitted

Oh, how I wish I could just stay in the studio, and finish the clothing. And not be in tears from the pain if stay any longer than 15 minutes behind/near the sewing machine... 

I am re-learning how to find the best posture, use the most appropriate chair, and most of all, to set my alarm.

So, all in good time, one day at the time, one small step at the time, the girls are getting dressed.

trousers fitting

Holding herself upright with her walking sticks

Saturday's session: first shirt in the making

And while I work away on the puppets, Dominic Fee is working on creating the movement of the puppets. I love collaborating with an artist of such calibre.

 Jimmy: "At last I made it onto a stage!"

Jimmy, my at least 25-year-old puppet, has travelled to Cork to be a 'stand-in' for the 'girls'. And how proud he looks! 

The 'stage' is Dominic's art: "DLV (DIMENSIONS, LOCATION VARIABLE) is a modular, interactive, open-ended artwork, made in 2013, consisting of several hundred wooden components which can be assembled together in many different ways." 

Jimmy with Dominic Fee's DLV artwork

The DLV artwork proved to be an incredible platform to facilitate the movement of the puppets. Dominic first trial had Jimmy move his arms, with the help of a small motor, and strings leading from the puppets via the DLV structure.

Incredible stuff.

Watch this space for updates!

Art and reality 

Over the years I have come to realise that my art reflects the stages of my life (with illness). Usually after a work has been completed. Sometimes I see this only years later... Reflections of growth, of hopes, challenges, and desires.

As this puppet project had a four year lead in period, in which my health took many a challenge, I can only hope that the movement, the stepping out, shown here, will in some way reflect my own present personal reality: the wish, and ability to dance. 

At least let me trust the reflection in the mirror - the movements which are possible in my mind's eye. 

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 :

Dog with Bone

This is a slightly edited  email conversation with a young woman who is dealing with the realities of living with M.E. and wants- understandably- recovery.

…. You are such a soldier, you inspire me! Corina I hope u don’t mind me asking but do you hope that u will recover from ME, do u think it might be possible that some day your health could be even partially restored. Or do u believe u will have it for life. What are your rational thoughts? …

… I know I can be annoying sometimes with my questions. My husband said to me only today I was like a dog with a bone going on about raising money for ME research. I have 90 blue ribbons to sell for the month of May. So I know I am obsessed with ME research and the hope of getting well again some day. ... I know you are a straight talker and thinker whereas I am a bit of a dreamer and I get carried away! ...

Dear, dear friend,

…

For years I kept up the hope to buy my beloved bicycle in Holland as I know I would recover. It was the dream. The goal. But as there were so many disappointments along the way, in terms of full recovery, I suppose I stayed more with what is Now rather than what Might Be.

In 2006, seven years after becoming ill, I bought a car again. Driving! Me. After years of only mobility scooter use. Funny enough a friend sent me a picture today of that time.

I was 'well'. I functioned, but still had ME.

I still had a lot of support at home, but I felt a little more part of society again. Even if I only drove a few minutes, a few times a month.

Driving along in my automobile (2006)

In 2012, a few days after my 50th birthday I seems to have picked up another viral infection. I was very ill. And I think menopause has played a part in my not recovering well. (that is a different story all together)

In 2012 I also understood that I might not fully recover. In a strange way it gave me relief. I could stop looking and trying and get back to living. Of course if recovery is possible some day. Great! But research is not there yet. And even if it was, we are all so different in our experience and symptoms.

(I sold my car again as it had been more a symbol what I could not do, and not a symbol of independence.)

I actually ended up doing a night class in Disability studies that year. It almost 'killed' me, but it set me up on a new road. Understanding long terms illness and disability from a much wider perspective. I wrote Into the Light as a result. As a result of not recovering and as a result of the year in college.

So, do I hope I recover? Yes. With emphasis on hope.

Do I think I recover? No.

But I will keep looking after my physical and mental wellbeing. Meditation. Easy movement. Joy. Good people around.

What is recovery anyway?

I am happy. 

I have my days of misery. But they usually come from wanting things I can not have. Or comparing myself with someone else. Or some else's life.

While I was writing to you a friend who is a chiropractic practitioner stopped by with a book. The Way of Healing, by Chi Kung. There are some extremely gentle exercises in the book to restore energy. Some are even just lying down with your hands on your belly. It is wonderfully simple. Here is a video link he gave me with sitting exercises. 

I will explore these kind of methods to enhance my life.

And, in terms of my bicycle. Well, who knows. It won't be today. It won't be next week. So in the meantime I am not using my precious energy to achieve that.

I don't know if that answered your question...

There are many, many thoughts on the subject...

I know you want recovery. Understandable. But please my dear friend, for your health, and the support around you, let go of that Bone! Research will happen without you looking at it. The magic will unfold some day. In the meantime. Live. Live the best life you can, with the people who love you around you. 

Stop researching the research ... it will come to you.

I promise. Healing will come to you. But maybe not in the way you expect it.

Let it happen.

Give the Bone to someone else.

Much love!

Your travel companion - Corina

PS, if you have a few words about your experience, I love to read them.

 ... 

Corina thank you for your lovely answer. I could honestly read your words all day. Thank you.

I would write something Corina but it would take me at least a week to get it together, loss and hope would be my theme. Plenty to write on that. I had let go of constantly researching the research a while ago, there was nothing left!!! 

I have signed up to Health Rising and Open Medicine, so if there are any updates they will come through to my email. I totally get living in the now, appreciating what I have. I do but at times I get lost in worry, grief and 'what will happen'. And get into a tizzy as u well know!!!

I have to hold onto hope though so I have to see that bone now and again, just not obsessively. I believe answers will come in time but as to when that will be, nobody knows, that part is hard to swallow. 

Not knowing. I compare it to jail, if you knew when u were getting out or getting sent to a prison with more concessions and freedom, it would make the hard days easier. 

I trust in God too that he will take care of me. 

I believe too that all the ME sufferers worldwide rightfully deserve treatment, it is a disgrace that so many have been left abandoned for so long, especially the severe cases. Funding is necessary. That is why I will sell my 90 ribbons no matter what, I will do fundraisers, not just for me but for those that cant fund raise. I will do what I can, that's all I can do.

Gosh I have written loads, I should be able to do a piece for you, once I start I am off!! Thanks for giving me the opportunity.

xxx

Millions Missing Protest in Dublin

The following details were compiled by Moira Dillon, and includes the work done by many others 

to bring this protest to the awareness of the public, the media, the government and the HSE!

On May 11th there is an ME community-organized protest at Leinster House, Kildare Street, Dublin as part of the Millions Missing Global Protest. ME patients, advocates, caregivers, family and friends will join together to protest the lack of government recognition and medical/public education on ME.

Due to the nature of ME, it is anticipated that many people will not be able to attend the Dublin Protest in person. There are several ways to participate virtually if you cannot attend.

HERE ARE WAYS YOU CAN PROTEST VIRTUALLY, OR HELP TO GET THE WORD OUT

• EMAIL YOUR CONSTITUENT TDs 
• to encourage them to come out and meet with us at the #MillionsMissing event in Dublin 11th May. 
• (Template for a draft email organised by Joan Byrne see at bottom of this post) 
• Website Link, including list of Politicians who have agreed to meet the protesters on the day: Millions Missing

• SEND SHOES 
• You may have heard that we are collecting empty shoes to represent those who cannot protest. The idea is that you pick a pair of shoes that can represent your personality before being ill or something that you can no longer do since being sick. But any pair will actually do. Please send a tag with your name, age if want or small detail of what it is you are missing, could even put a photo with it. If family or friends are attending on your behalf they can bring them and stand beside them on the day. We would love to get as many as possible from around the country. (Contact me For Address)

• TAKE A PHOTO OF YOUR SHOES
• On May 11th take a pair of shoes (or several) and put them on your doorstep, lawn, or driveway. Take a photo and post it on social media with the hashtag #MillionsMissing. Anyone can participate, whether you are a patient or a friend expressing solidarity.
• You might pair the shoes with a sign that expresses what the empty shoes mean to you. Some examples: ‘I cannot walk to the end of my driveway’ ‘I cannot wash my hair’

• PROTEST ON SOCIAL MEDIA
• On May 11th, post selfies on social media (Twitter, Facebook, Instagram, etc) – in your bed, home, wheelchair, at work, wherever you live – to help us show online the millions who are missing from the global protest. Use the hashtag: #MillionsMissing and all the photos will be aggregated.
• You might also consider typing slogans or holding your own protest sign with a slogan in your photo. Examples:-
• Missing my life for 22 years because of ME / Missing in action since 1991 because of ME
• Missing equity in research / Missing adequate medical care
• Missing a doctor who believes me
• Missing college / Missing my family / Missing running in the park
• Missing but no longer silent

• INSTAGRAM
• People from all over the country can send photos privately (by messenger/pm) on facebook to Moira Dillon or by  email to take part in the Millions Missing Dublin Instagram page (so called because Dublin is where the protest will take place)
• Just send an image of yourself and some information e.g. 
• Missing my life for 22 years because of ME / Missing in action since 1991 because of ME
• Missing equity in research / Missing adequate medical care
• Missing a doctor who believes me
• Missing college / Missing my family / Missing running in the park
• Missing but no longer silent 
• You don't have to be on Instagram to take part
• Here's the Instagram page:- https://www.instagram.com/millionsmissingdublin/

• FACEBOOK
• If anyone else wants to chat more about the #MillionsMissing demo in Dublin on May 11th just ask to join this group: https://www.facebook.com/groups/1888582618091139/

• TWITTER
• If anyone here is on Twitter give @MMDublin a follow. Account set up to promote the #MillionsMissingDublin event on May 11th https://mobile.twitter.com/MMDublin

• MILLIONS MISSING TWIBBON
• Add the #MillionsMissing filter to your social media profile photo
• During the month of May change your profile picture with the Millions Missing twibbon:-https://twibbon.com/support/millionsmissing-4

• CONTACT THE MEDIA: RADIO, NEWSPAPERS, TV
• Contact your local paper, radio station and tell them your story about life with M.E.
• See List of all newspapers
• Contact national radio stations/programs.
• Contact TV programs, like The afternoon show, TV 3 etc.
• Contact Joe Duffy's Liveline, to aks him/his team, to dedicate (part) of the show on the day to the protest. Talk with people at the protest and at home
• twitter
• email: joe@rte.ie
• phone: 1850-715815
• 
  
• M.E. INFORMATION PACK
• An ME information for  TD’s, HSE and other interested parties:  The situation of Myalgic Encephalomyelitis patients in Ireland 2017 has been compiled by Joan and others 
• Please contact me and I forward the PDF of same.

Template for emailing TDs:


Insert Your Address
Insert Date

Dear 

I am writing as a constituent of yours to ask for your support.

A group of Myalgic Encephalomyelitis (M.E.) patients, their carers and advocates will be holding a demonstration outside Dail Eireann on Thursday May 11th for a couple of hours to highlight the total lack of appropriate medical and support services for those with this illness and I would like to ask if you would pop out to meet them at some time that day to hear their concerns. 

The demonstration is part of a worldwide event to coincide with World M.E. Day and is called #MillionsMissing.

Many, many patients with M.E. are bedbound and housebound and are too ill to attend a demonstration so in their place they are sending a pair of shoes with their name tag on them and some detail about themselves. 

I am (edit as appropriate) an M.E. patient/carer/friend of ME patient/family member of ME patient/advocate and if I cannot make it there personally there will be a pair of shoes in my name (or name of person with ME). I hope you will take the time to absorb the impact of these empty shoes and to think about the people who desperately want to fill those shoes and to get back to living a normal life.

The organisers of the demonstration have already emailed you explaining how awful this illness can be and of the neglect suffered by thousands of people in Ireland. As a constituent I am asking you personally to come out and speak to them outside the Dail for even a few minutes. Most of them are patients themselves and they will pay a very high physical price for their efforts – with many likely to end up being extremely ill for an extended period of time afterwards.

We would like your support on May 11th. Come out and say hello. Listen to the stories. We need a commitment from you to help promote the establishment of a forum comprising patients, ME organisations, medical personnel, health policy people and TDs in order to progress the needs of people with ME here in Ireland.

Please don’t ignore us. We have been ignored for decades and this is our first time becoming ‘visible’ in such a public way. 
Many thanks

Sample Template for Liveline:  joe@rte.ie

Dear Joe

my name is... and I am ....  living with the illness M.E. for the past  ...  years. The illness has greatly changed my life.  (or add your details  if you are a carer ...) And Tell a little about yourself.

There are many of us in Ireland, but our illness is often not recognised by the state, or by the HSE.

We hope to change that by holding a demonstration at Leinster House on the 11th May.  The demonstration is part of a worldwide event to coincide with World M.E. Day and is called #MillionsMissing.

We have asked our representatives in the government to meet us. See list on this website page, who have agreed to meet us.

I will be at the protest  or 
(use whatever is appropriate  in your circumstances)

I most likely won't be there myself, like many, as we are unable to travel, or even leave our homes due to the severity of illness. We will be represented by our carers, or by our shoes... Again, please see website page.

Is there any chance that liveline can give us airtime that day? 

We would so appreciate if we can share our stories: From the protest, and from our homes.

Kindest regards

your name, address  and phone number

https://www.facebook.com/events/133532340510944/

http://www.corinaduyn.com/site/millionsmissing

Identity

page from 'Hatched' (re-hatched)

In my book Hatched, which spans the first eight years of living with ME through images and very shorts thoughts- poems- I queried in May 2001, if I was still me?
I am
am I 
still me

Being so ill. Was I still me? What does illness to do your identity.

All these years later I think I can safely say that I am MORE me than I ever was before illness.

An ailing body and all. I am more authentically me.