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We also wrote to the Wellcome Trust about the book's negative and unfounded, outdated information regarding ME, but nobody responded.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

Care givers need care too- Heart of Caring Conference

THE HEART OF CARING 
Compassion and Loving Kindness must begin with the self. 

This conference, organised by The Sanctuary, will explore how cultivating Loving Kindness and Compassion for oneself can be a stable foundation for ‘Carers’ and those working in the Caring Profession. 

There is a growing body of evidence that Loving Kindness Meditation and Compassion are useful in creating the conditions for a more caring and resilient environment both at work and at home. We will consider what is at stake for Carers when Self Compassion and Loving Kindness are absent and why that absence can lead to severe burnout. 
see here for more 

The cost of the conference is €110, but the Sanctuary has created 'sponsored places' specifically for family carers.  You can become a sponsor to enable a carer to attend at reduced cost, or your company can sponsor a conference place for a carer. 

Details:

Are you a full time carer or do you know a carer who you feel would benefit from attending our conference?

For our 7th Annual Conference. 'The Heart of Caring' on May 10th we will reduce 50 conference tickets to €50 each.

This is in the spirit of ensuring that those who are carers who just can not afford to go can join us on a day of caring with and for each other. Cost can be prohibitive for those on Carer's Allowance. Many carers who are on Carer's Allowance and want to come to the Sanctuary Conference possibly have to pay for someone else to spend the day caring. These supportive gatherings based on Loving Kindness and Compassion are essential for carers.

To avail of this discount, please enter the code "carersconfdis16" at the checkout. Tickets are limited to two per person. A max of 50 tickets are available under this discount. Please book early to avoid disappointment. These tickets are offered on a trust system. No proof of payment or occupation is required. We would kindly ask that this system is respected so that those who really need it can benefit.

May 10th 2016, Dublin Castle, 9am - 4pm

Includes lunch and refreshments

Speakers: Sharon Salzberg, Niamh Bruce and Kathleen Neenan

Click Here to Book

In addition to the above places we are seeking sponsors for additional carer's places. If you or your company would like to sponsor a conference place for a carer, please ring us on 016705419. In association with the Carer's Alliance of Ireland we will allocate these places to family carers. The cost per sponsorship place is €75.00. Full receipts for the donation will be provided. 

From "Into the Light"  by Corina Duyn  (shop)

Reflections on the celebration and book launch at the Sanctuary in Dublin

view from the small meditation room into the larger space
where the launch was held.

The celebration and launch of Into the Light at the Sanctuary is one event I won't forget for while. I received so much support: Jane who brought me there and supported me over the weekend, from J. who kindly sponsored our stay, and all the staff and Sr. Stan at the Sanctuary, and friends who supported me in their thoughts, helped me to pack books, and baked gorgeous cookies. My deepest gratitude to all.  

On Friday we took 'part-ownership' of the beautiful meditation room with it's vibrant blue wall and stain glassed windows, to display some of my sculptures and hang one of the sets of the 'flags' (pages from my book in a box)

Saturday was the actual launch. Again welcomed with open arms. The Sanctuary is really that, a sanctuary of tranquility and kindness.

There was a lovely groups of people for this event. The conversations about the book and all things related to life with illness were already being discussed before the actual talks. Very interesting indeed.

Sr. Stan, the founder of the Sanctuary started the official proceedings by telling the guests about the Sanctuary and that this afternoon "... was an opportunity to launch an extraordinary book. An extraordinary useful publication.

In many ways it is a journey of a soul, which is the story of somebody who has lived with chronic illness for 17 years, and through that has gained extraordinary insight into the world.... Into disability area in the first place..." Telling a little about my year of Disability Studies and finding that there was little about the experience of illness/disability and how my deteriorating health at the time of writing the book, dictated the final format of loose sheets in a box.

Sr. Stan and myself...

The voice recording of the talk is available at the bottom of this page 

"[Into the Light] is not just an ordinary book, it is a deeply spiritual, inspirational work. 

The story of challenges overcome through courage; the story of fear overcome by hope, the story of darkness overcome by light, and that comes right through, it is really really inspirational. It makes for an extraordinary presentation."

"The loose sheets - all aspects of image, quote and reflection are all connected.  It is accessible for the reader, inviting them to participate." Sr. Stan said about the pages: "It doesn't need my words . They speak for themselves."

It was lovely to see and hear Sr. Stan reading some of the pages from the book as it looked like she almost forgot that she was reading them for others to hear; she seems to be taking in the images afresh every time. Thank you!

Reading the page with the quote of the Buddha, Sr. Stan concluded that "Corina discovered her world and has illuminated that for others."

It was then my turn to talk. I started with my background and move to Ireland, the first indications about being ill, and how I had to learn to find my way in this new world. To take ownership of my life, to learn from nature, to use my creativity and how in the very recent past I am starting to be more comfortable to share my experiences more hands on- through the puppet workshop, the talk at UCC and now at the Sanctuary.

The voice recording of the whole talk is available at the bottom of this page 

Afterwards I had some great, but all to short, conversations with guests in a more private capacity, and it looks like some new opportunities may arise from this event. 

I am deeply honoured to have had to opportunity to be part of the Sanctuary 

for a few hours on a wet and rather cold April day.

Puppet Johnny joined us at the launch too!
"Be Still and Know".

Into the Light and my other books are available from my shop

RECORDING OF THE TALK: