Portrait of an Artist: Corina Duyn. By Donal Buckley

 Artist Donal Buckley writes a weekly column in the Dungarvan Observer about fellow artists, writers and crafts people living in our area. I had the honour to chat with him last week. 

We talked for a long time about all things creative, and about the challenges and opportunities while ill. He is a pure gentleman.

Donal kindly forwarded the transcript so his words are available to many.

Thank you Donal.

 Portrait of an Artist: Corina Duyn

Corina Duyn is a beautiful lady. From her gentle smiling eyes to the tips of her tapered fingers, honed by years of creativity, she is loveliness personified.  Corina also has Myalgic Encephalomyelitis, or ME for short. This is a complex and disabling condition that still isn't fully understood nor is research in to this illness sufficiently funded. In spite of all this, Corina Duyn is not defined by her condition. She considers it to be another path whose obstacles she must try to cope with in life. It is where she has encountered new experiences and met new and interesting people. I went to meet her at her home in Lismore, a cottage overlooking the Blackwater Valley. Over a cup of coffee and a chocolate croissant we chatted about the world and art.  

Which artist do you admire and who inspires you the most?

Emma Fisher is a theatre set and costume designer who also has a Doctorate in Puppetry and Disability from Mary Immaculate College in Limerick. She designs and makes puppets as well as creating animation. As a puppeteer she has produced and performed in many theatres being nominated and winning awards in several categories. Emma set up "Beyond the Bark" puppet and installation theatre in 2007. Much of her work is centred around the Limerick area with Limerick Youth Theatre, The Belltable Arts Centre, Saint Mary's Cathedral and Bottom Dog Theatre Company among others.

What are your reading habits?

A book which made a big impact on me and learning to live well with illness is by American author Julia Cameron who collected various tips and hints from artists and writers to help other artists with artistic block, disability or recovery. She put these tips and hints into book form and tried to have it published. She was turned down. She decided to publish the book herself by typing and xeroxing several copies and selling them at the local bookstore. It became so popular that a publisher, who would eventually become Penguin Books gave her a contract and sold millions of copies worldwide. The Book was originally called "Healing the Artist Within" but was re-titled "The Artists Way" in 1992 before it went global. It has helped many people, including myself, with self confidence and harnessing creative talents and skills.

Are there any particular colours you like to work with?

I have a great love and appreciation for nature, which is the inspiration in my life and often features in my creative work. I prefer all the colours that occur in nature. Whether its the blue of the sky, the greens and browns of foliage or the silver of seas and rivers, they are best seen in their natural state. 

Do you like listening to any particular music?

Any kind of gentle meditative music sounds good to me, at this particular time in my life. If I had to pick just one specific piece of music it would be the classical "Stabat Mater" by Giovanni Battista Pergolesi. He wrote it in the final days of his life in 1736 and the manuscript in his hand writing is preserved to this day. He wrote the final notes before he died of tuberculosis at a Franciscan monastery in Italy. 

Where is your favourite place?

If you go to the Beara Peninsula in West Cork and carry on past Castletown-Bearhaven towards Lambs Head, you will see a group of buildings high on a cliff. This is called Dzogchen Beara and is a tranquil retreat created byPeter Cornish which follows the Tibetan Buddhist tradition. He wrote about it in his book "Dazzled by Daylight". It is set in a beautiful natural environment with stunning views. It also has a Spiritual Care Centre that offers support to those suffering grief, life limiting illness, coping with disability or burnout though it is open to anyone. Its a pretty, positive and peaceful.(and that's just the letter"P"). There is an energy here combined with the magnificent scenery that is conducive to the healing process.

...

     Its difficult to pin Corina Duyn to a particular creative genre. She is an artist, a designer, a writer, a puppet maker, a lecturer in puppetry and disability. Her latest diversification is in to the field of shadow puppets. It is a very accessible art form which gives her the scope to explore and share the experiences of ilness Her education gives no indication of her vocation as she studied Nursing and Social Care.      

       Corina was born between Amsterdam and the coast of the Netherlands(she won't tell me when). From an early age she showed a flair for creativity by making her own rag doll at the age of ten. She arrived in our midst in 1990 when she made her home in Lismore. Before, during and after her diagnosis with M.E., Corina was and is a leading light in our arts community. She has featured  on tv and radio with such notables as Padraig Naughton, Sister Stan and Sean O'Rourke. She also featured on the Nationwide programme which can be seen on YouTube along with a video on the launching of her book "Into the Light" among others. Other books in her repertoire are "Hatched", "Cirrus Chronicles" and "Flying on Little Wings". In 1996 Corina was commissioned by Waterford Crystal to create a miniature representation of their factory floor. She has given talks on puppetry and disability to students in the UK and Irelnd, as well as Brazil and Chile via Skype. Corina Duyn hasn't succumbed to her disability but increased her capabilities.

         Should you wish to view any of Corina's video's, buy her books or find links to other aspects of her creative life, you can go to www.corinaduyn.com/site/ where you will find all the information you need and contact options. Because she is saddened and frustrated by the lack of care for M.E., Corina is one of seven women advocates for M.E. sufferers in Ireland . The M.E.A.I. is a national advocacy group that lobbies for better facilities and conditions for the many people with this illness in the country. 

        I could so easily fill many more pages on the extraordinary life of this exceptional woman, but for now I will rest my case for the beautiful lady with the beautiful mind. 

I will leave you with her favourite quote, from American Singer/Songwriter Kris Delmhorst, "I don't want to rip the skies wide open, I just want my song to be heard". Corina Duyn, I hear you, and I thank you. 



© Donal Buckley, published in the Dungarvan Observer, 17 January 2020, page 46
 (although newspaper comes out on Wednesday's, this week 15th January.)

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)

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 film, where 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:

Website: www.corinaduyn.com

Blog: www.corinaduyn.blogspot.ie

MEAI: www.meadvocatesireland.blogspot.ie

Reflection Puppets ready for protest
Image reproduced in Evening Echo 

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.

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" 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

Creativity and me 3: Fit to Fly documentary by David Begley

Creativity as a tool to understand illness, but it can also bring you the most unexpected of places. 

As you might remember the EGG became a tool for me to understand and explore my completely changed life at the onset of ME/CFS in 1998. Although I lived a very secluded life, I somehow made contact with the world beyond my four walls -beyond the shell of my egg.

One of these contacts was with artist David Begley.
For the life of me I don't quite remember how this happened, but what I do remember is that it was a friendship of writing and receiving incredibly honest letters, of sharing our creative lives, phone calls, watching movies, or exploring Lismore, where he arrived on a little motorbike, and visits to Ardmore...

As a result of this friendship David created the Fit to Fly Documentary, During 2003-2004 and was supported by the Arts & Disability Forum Arts Bursary.
David interviewed and filmed me, my friends, the arts officer, and visitors to my first exhibition about how illness informed my art making. And visa verse.

The launch and first screening of Fit to Fly was at Lismore Library in May 2004, and opened by MEP Brian Crowley.
Fit to Fly, catapulted me from my solitary existence into the world of the media. The story was featured in many national and local newspapers. David's filming and storyline was taken up by RTE. Nationwide (national TV program about life in Ireland) made their own version. We had an interview on TV3 Ireland AM. It was all a very surreal experience.

some of the media coverage
of the launch of Fit to Fly, 
and accompanying exhibition

Months later I was in Cork for a hospital visit. Afterward a friend brought me out for lunch in the  city centre. While sitting out on a terrace, a woman walked by, stopped, looked at me, and said: "I saw you on Nationwide. I have one of your Dolls", and walked on again.

Being creative can bring you the most unexpected places. 

The Fit to Fly documentary is in total about 14 minutes long, but shown here in two parts.
(it starts with a black screen for a few seconds...)

Links and further reading:

• I am still a huge admirer of David's work. His paintings are just beautiful, his new departure in animation (too small a word for his works) is spellbinding.  
• Other documentaries about my creative life 
• Reviews of Fit to Fly 
• The artworks in the video can be seen here 

Writing the true story of ME/CFS, not creating sensational headlines

Why do I write?

Because I need to.

What is a writer?

• a person engaged in writing books, articles, stories, etc.,especially as an occupation or profession; an author or journalists
• a clerk, scribe, or the like.
• a person who commits his or her thoughts, ideas, etc.,to writing: an expert letter writer.

Taking the above description into account, then yes I am a writer. But aren't we all in some way.

Yesterday I was delighted to read that one of the national newspapers had put in a request to the Irish ME/CFS organization, for an article written in a first-person's account of living with the illness. As I have recently started to contact various media outlets to write a regular feature on life with chronic illness, I put my name forward for consideration. However, as I was featured in that paper a few years ago this opportunity was ruled out. Fair enough.

At first I did not remember being in that paper, but last night I did...  It was not an article that I had written myself, but as a result of an interview.

Sometimes a journalist really understand your story. And they are great at telling the truth. They re-tell the story, our story, as it is. Other times the story is dramatized -sensationalized. 

I remembered. 
I remember that interview. I remember sitting, and at times lying, on the couch looking at the fire as we spoke. I remember getting up, walking around a bit, cordless phone in my hand. It was a long but frank and open interview. I felt that the journalist understood the illness and the challenges.
I told her about my story to date. That I had periods of being housebound. That, living with an illness so poorly understood can bring its challenges in terms of getting proper support from the medical profession. I also talked about my creative life. How that helped me to deal with the challenges.

I remember discussing how some media has a tendency to sensationalize, or dramatize the illness. For whatever reason. I felt that she understood my concerns. And yet, yet, she proceeded to portray my story with the tag line under my photo: "Freedom: Corina Duyn is now able to leave her house after being confined to her bedroom for 10 years." Which was far from the truth.
The article starts with for Corina Duyn the loneliness is the worst aspect of the illness. Again this was not the case. I had and have a wonderful set of friends who made sure I was never lonely. I was well supported, and I am quite happy with my solitude. I value it. There is a difference between loneliness and solitude.

The main reason I ask journalists not to dramatize the illness as that I feel it frightens people who are recently diagnosed with this illness. It is frightening to read that there is no life with ME. That all live is lost. Absolutely no way of recovery. Life is hell. You might as well throw in the towel of ever having a life again.

Reading the article my thoughts were going to somebody recently diagnosed and reading in the national newspaper that somebody with the same illness had been 10 years alone in a bedroom. How is that person going to go on with her or his day? Having the prospect that that might be happening to them. I feel responsible. I feel responsible for telling the truth. MY truth.  Not frighten people.

I remember when I was ill for the only a few months and I read an article in the paper that somebody was ill for five years and there was "no life with ME."

No life!

What kind of message does that bring?
It scared me. I couldn't 'go' there.

It brings a message of fear. Fear of the unknown.

Fear of never ever seeing the light again. 

I don't see it that way. Yes life with ME can be absolutely s**t. Can be an absolute challenge. But as we wake up in the morning, and take our first conscious breath, we might as well make the most of our day.  That has been my motto for 18 years.
Some days that might just be getting from bed to couch. And back again. Or having to stay in bed and deal with the pain. Just be. Exist. Other days one is able to stick ones foot in the door and experience the light of life again. Some days are filled with some glorious moments of gratitude.

I write, because I have to. I write to make sense of my life. I write to make sense of pain, of exhaustion, but also to see that beauty is still around me, and in me.

I write to tell the story of ME as I see it. Warts and all, but also the beauty and wisdom of nature. The lessons we can learn. I write to support others with ME. I write to maybe make that one person who reads my words be less fearful of their reality. To let them know they are not alone. To make them take a deep breath and feel the life within themselves. As long as we breath, we are alive.

It hurts me deeply when our story of this relentlessly challenging illness is used to sell newspapers.

To make it a tabloid story. That time in 2009, I was appalled to read my story in such a twisted form. I wrote to the newspaper, to tell them of the hurt they caused me.

Many friends wrote to the paper as well, to tell of the anger of how my story was portrayed. A misleading story. The story reflected bad on them too. Friends were my lifeline. Here it was suggested I was left alone ...
I know a lot of people do loose friendships during this illness. That is a hugely challenging fact. My heart goes out to them.

The journalist stuck to her version.

That is why I am glad that the newspaper asked for a story written by a person with ME. A story written as it is (unless it will be edited). A true account. Not written from the perspective of an eager journalist. 
I have had other journalist making up some words I would never have said. They take creative licence. Other times the story portrayed is basking in truth. Thank goodness!

Over the past month I have written a daily blog. It gives me a space to write about life as it is. For me. And respond to what others are asking or telling me.  My biggest dream is to write for printed  media. A few opportunities have come my way to share my views of life with illness. A life I feel I have turned from illness into wellness. This does not mean that I have recovered. I still very much live with this debilitating illness, am very restricted in my movements, in my available energy, but I am alive. I live a good life.  A creative life. A life filled with gratitude. Writing came into my life because of illness.

I don't write or create art as a business, I write and create to understand my own story. To share my story, to be of support to others. Ill or not ill!

It is hearth warming when I seemingly have reached someone with the words that I utter, or the sculptures I create. That my explorations make sense for whatever their life story is. To read in their messages, or email, or letters that one word, that one sentence that made them sit up and think. To make them be creative again. To see that there is a way to live with this illness. Until a cure might come our way.

I read too. Lots! And I too have those moments where you think, 'ah, that is exactly as I see it, I just didn't know the words for it.' I thank other writers for writing my thoughts.

That is why I write.

And that's why I think it is important that the story of illness should be written by a person with illness, or alternatively by a very understanding, and sensitive journalist.

Links and further reading

• writing story from 2011: write-time
• my books

We need to tell our story...

Page from 'Into the Light © Corina Duyn 2015

ME Awareness month (including 12th May International ME/CFS Day) is almost upon us, and I am heading into this month with a sick feeling in my stomach. 

I usually feel proud of what I have achieved in the past 18 years; how I manage to live my life despite living with this illness. How my focus is on the positive and what I have learned from this experience of life on the other side.  The side nobody wants to find oneself living in...

But in the past few weeks a sick feeling in my stomach is increasingly getting worse. Today I actually felt nauseous reading what one woman (and most likely a strong group of people/lobbying group behind her) can do to a large group of people in Ireland, UK, Holland and beyond, no doubt...

This Irish born neurologist wrote a book about psychosomatic illnesses. I must admit I have not read the book, but have been subjected to her thoughts on ME as an illness in ones head, during a radio interview last year with Sean O'Rourke Dr. O'Sullivan, the writer of the book "It's all in your head: True stories of Imaginary illness had been on the radio the day before, so of course we (Sarah and myself) we asked about this, and I think we both gave our views on the reality of this illness in a clear and calm manner. 

I thought that was the end of that.

It wasn't.

This doctor had her book shortlisted for the Wellcome Book Prize 2016 and she was on a Media tour. An interview with Ray D'Arcy made me sad and angry. 

I wrote to the show in response to the fact that the reporter and interviewee were giggling when they broached the subject of ME, with D'Arcy mentioned as being "Common in the nineties" 

"... Your interview with Dr. O'Sullivan has caused great upset in people living with M.E. especially the fact that you were giggling. This condition is very real for many people. To belittle it by giggling is hurtful, to say the least...."

I know many of the people living with ME wrote to the show as well, but there was no reply to any of us, and no apologies were given the day after the broadcast, or since. 

I wrote to the Broadcasting Complaints department, and so did others. We are awaiting the outcome of the investigation.

We also wrote to the Wellcome Trust about the book's negative and unfounded, outdated information regarding ME, but nobody responded. 

To our horror, this book was awarded the overall prize of £30.000 and all the recognition coming with it.

Within a day one of the members on the Dutch health committee charged with defining M.E. as a unexplained illness retweeted a tweet in support of O'Sullivans book. Today the Irish Small and Medium Enterprise Association (ISME) jumped on Sullivan's bandwagon (no idea why) with the headline Can this book save HSE €3.5 billion?

"Dr. O’Sullivan claims the modern healthcare system is collapsing because of people experiencing physical illnesses that have no physical causes. The suffering is real; the causes may be subconscious and therefore the cures are wholly ineffective and wasteful. ...  it could be costing the Irish system €3.5 billion or a full quarter of the health budget." 

I really fail to see why ISME would be advocating this book... And suggest its members to buy it...

Page from 'Into the Light © Corina Duyn 2015 

In my own recently published Artist book Into the Light (of which you see some of the pages here) I broached the subject (among many other thoughts about illness, good and bad) of the danger of giving people with a physical illness a psychiatric diagnosis. 

WE NEED TO TELL OUR STORY!

I have experience of this too, and the recent focus on all in your head brings it all back, and that is giving me a sick feeling in my stomach.

Page from 'Into the Light © Corina Duyn 2015 

I was in hospital in 2013, a planned five day stay to re-evaluate where I was at in terms of my health/illness, as I had the previous months become more ill again. That week the main focus seems to be physiotherapy, which I appreciate as the therapist was understanding although a little too adventurous perhaps with suggested exercises.  But one of the main questions I was asked that week from two neurologists and other doctors, was "How's the form?" 

After fifteen years of illness I was yet again (also in 1998) referred to a psychiatrist. I was asked did I mind? No, not really, I know my life, I understand my illness.
I had a very, very long meeting with a liasion officer for unexplained neuroligical illnesses and this young woman dug as deep as she possibly could to find a reason for illness. Childhood, teenage years, school, anything she could possibly think of. 
She also asked me: "Why do you think you have ME? It does not exsist."

I found this a very dangerous statement. One I can cope with, but I was thinking about other more vulnerable people who might be ill for a shorter time, and feel under tremendous pressure to be told that their illness does not exist. Suicide is not uncommon. 

I told her of my life, how I deal with illness, that I have beautiful garden, a lovely home, that I create art and books.

The following day I met with the psychiatrist himself. The liaison officer was there and one other person, of which I do not know his role.  The psychiatrist was intrigued (his words) by my story, and concluded that he saw no psychological illness, no depression, could not suggest any medication, and felt that if I wanted to achieve something, I obviously have the skills to do that. He did not prescribe me to come to the CBT clinic at the hospital, but if I ever had the opportunity to do this in my hometown, than maybe go for it. (My GP threw that out the window)

Case dismissed. Although of course the liaison officer's notes are in my file and that was very much evident during my last hosptial stay in 2015... Oh well.

All this I had more or less forgotten, or had simply added to the list of experiences, but the recent controversy surrounding O'Sullivan's book and comments, it all came to the fore again. Not so much worried about my own wellbeing, but more for the many people living with this, or other unexplained illnesses and of their well being. 
Worries that the already minimal care and understanding will be even more diminished, and financial support being questioned. Practical support being cut back even further. And most of all that society has yet again a reason to disbelieve the expereince of so many.

Is this really just the story of one woman? Or is there some kind of lobby group behind her?
I am baffeled by her power...

ME Awareness week has suddenly taken on a whole new meaning.

I hope that the majority of people will listen to the real stories and not the stories that are in O'Sullivan's head.


Be well!

If you are interested in the Into the Light book, it is on special offer 

during ME awareness month  €25. see my shop 

Page from 'Into the Light © Corina Duyn 2015