Ciara Chapman 'My Chronic Pain Diary'

 'Entry #54 I've recently started meditation' 

Ciara Chapman

Apologies for not turning up on my blog yesterday, (am recovering from small surgery, which turned out to be much bigger than the surgeons had expected...). 

However two wonderfully creative ladies, and Little Wings blog readers had brilliantly timed thoughts about living with illness. I shared Therese Doherty's thoughts on acceptance on my Facebook page yesterday, and the following came from Ciara Chapman, the latest entry of her Chronic Pain Diary

I wish you well for today, and I hand over the reigns to Ciara,  my guest blogger for today:

'Entry #54 I've recently started meditation'
© Ciara Chapman 2017

"My name is Ciara Chapman and I am an illustrator based in Cork city, Ireland. 
I studied Fine Art Printmaking (1999-2002) and Graphic Design (2004-2005) in college so art has always been a big part of my life. 
Things changed for me in a major way in April 2015 when my chronic pain began in the form of long term sciatica and has continued ever since. I am as yet awaiting diagnosis for my medical issues which affect my left side from the neck down. I don't have a clear cut diagnosis so I'm going through a process of elimination to determine the problem. 

I was finding the constant waiting as well as the physiotherapy and the general isolation difficult to cope with so in January 2016 I began illustrating my experiences in the form of a diary titled 'My Chronic Pain Diary '. 
This diary is a combination of the positive and negative aspects of my new way of living. 

I have been following Corinas blog for some time now and have found it such a wonderful resource that has helped me to accept, manage and appreciate my new normal. It was through reading Corina's blog that I began to understand the befits of meditation and so I was recently inspired to include it in my daily routine. This illustration sums up my own experience of starting to meditate. 
Thank you so much Corina for allowing me to contribute to your amazing blog, please keep writing so that we can keep reading. "

Links and further reading

• Ciara Chapman's Chronic Pain Diary on Facebook 

The vastness of nature

Seated in the meditation room at Dzogchen Beara Care Centre, looking out over the vast ocean in front of me.
A fishing boat looks like a tiny toy.
The hand of wind pushing it down.
Letting it go.
Disappearing.
Appearing.

I realise how in-significant we are
In this vast world.
How little control we have.
How tiny a part we play.

But also
that we are one
with that world.
We are one with nature.
We are nature.

Awareness
That I still have so much to learn.
To understand.
Aware how little I know.

........

With those thoughts twirling through my mind during the past few days, it made me smile to read this line in Matt Padwick's book 'Running Contra Diction'. ... "Isaac Newton was fierce clever and he said "what we know is a drop, what we don't know is an ocean."

As it happens, Matt is running the bookshop/cafe at Dzogchen Beara and his novel has strong links to the area.
I only just started reading his book last night, but loving it already. I had the pleasure of meeting him yesterday.
The book was recommended to me by my fellow guest Jamie, who is a very wise, interesting and gentle soul.
I love how meeting people and finding books all bring us along to gain just that tiny bit more knowledge of life.

And so I will be heading home again today.
First a chat with John before Mariela will be here to collect me.
I am not looking forward to sitting in a car for hours...
Coming home will be strange as there is no Robert Cat to tell me all his news.

I valued my time-out here. The ever changing weather. The ever fluctuation in my energy. The awareness of how I function. What my challenges are. Where my strengths lie.
Reality checks, balanced with beautiful moments. Meeting some wonderful souls.

I will be back!

The wise Jamie said that life deserves punctuation marks....

I keep that in mind.

Life Outside the Box (part two of puppet project)

During one of the days working on the puppets we had a 'brainstorming' session to come up with a proper title for the project- the book- and the film. The puppet project was the working title as the saying goes. Well here are a few of the suggestions that did not make it, some for obvious reasons!

• The Freedom Project
• The Anatomy Project
• Puppets on an Adventure
• What's in the Box
• I'm a celebrity, get me out of here!
• Puppets on Tour

The last one... well who knows, the puppets might go on tour... if our film will be given an Oscar nomination next year... we are hopeful!

So, I am happy to announce that The Puppet Project has been given it's proper new title: "Life Outside the Box".

making the BOX

The Box.
Society's Box.
The Disability Box.


Yes, we are all living with disability/illness, but by no means are we stuck in this box!

We are stepping out of it!




On Monday we will be practicing with our (nine) puppets to get them to step out of the box. Well, I can assure you, it won't be graceful! We are certainly not brilliant puppeteers in this short space of time, but the skills we do have, is having FUN! We are extremely good at that!

And we have pride.

The following Monday, the 25th January, Alan from Bootleg Studios will be filming us (the puppets) stepping out the box, at the Dungarvan Shopping Centre (Co. Waterford). We will be there from about 11, filming from about 11.30. PLEASE COME ALONG! 

We want to make our point with this (to be a very short) video, by stepping out of our box, that we too are part of society. 

You are likely to meet the 'reporter', a 'musician' busking, a 'granny' dancing,  a baker, a biker, a clerk, a young boy and his dog, and a beautiful girl on a butterfly.

All stepping into Freedom.

Reporter made by Corina

Clerk made by Paul 

Butterfly girl made by Amy

Another date for your diary:

The book and the film will be launched with an exhibition (all going according to plan) at Dungarvan Library on Thursday 25 February between 6 and 8 pm. More about this closer to the date.

If you like to keep up to date with this project or other things I write about, please sign up with email on the top right of this blog, or send me a message.

Best wishes and see you on 25th January and the 25th Febraury!


Corina

supported by

Documentary with a difference

Last Monday night RTE showed a beautiful, though provoking, gentle yet mind opening documentary about the romantic lives and experiences of people with disabilities, created by Wildfire Films.

The documentary follows a group of people with learning difficulties involved in the theatre group Blue Teapot tackling the issues they encounter. Also, people with physical disabilities are interviewed in this remarkably open and frank program. A married couple, both living cerebral palsy tell us that they were asked 'what were they thinking' by becoming pregnant. The young mother was worried to bond with her baby daughter out of fear that the health board would take her baby away, although they are more than capable to look after their child. Heart breaking. They were also asked, 'how do you actually do it...' Who else is being asked how they conceive a child...?
Living with an enquired disability brings up other issues and challenges.

Please do watch it, it is available on the RTE Player page for another 20 days or so. I can not imagine that it will not open your mind about these issues and issues about disability in general.

Link to the documentary Somebody to love documentary

ps. As I no longer have a Facebook or Twitter account (find it all too confusing...) but you think this Blog deserves to make a presence there, please feel free to link it on your page. Thank you!

Rose hip, rain, and wonder

water droplets on a rose hip © Corina Duyn 2013

It is raining today. Pretty much all day. But look at the beauty it gave us. 

Water droplets hanging under the rose hip in my front garden. Click on the image, enlarge it. See the reflection of the branches in the droplets. So delicate. So beautiful.

(well at least I think so, but then, you probably already got that idea!) 

When the birds land on it, the water shakes off, within a few minutes, the wonder repeats itself. Who needs sunshine on a day like this?

I am about to start an online mindfulness course next week, provided by Vidyamala Burch, who's work I have been following for years. The Bodyscan meditation CD has been my companion for maybe a decade (?), and her book "Living well with pain and illness', a clear, no nonsense book, full of great wisdom we can all use (ill, in pain, or not) for the past year. I am excited to get started. 

One thing I don't have to learn anymore... looking with great attention at the world around me, the natural world in my case has all my attention!

One more thing, remember Anastasia? who created that amazing book called Dear Stranger.  

In short, this is is a book written to a 'dear stranger', about living with ME during her teenage years. She published it last year by letterpress. Each letter put in by hand. The illustrations are woodcut prints. The books are to be handed from person to person and she has now reached the finishing line, but needs a little help. Please take the time to visit her website, and see how you might be able to help. I have one of the first 20 bound copies. It is precious. Very precious.

I am SO proud of this young woman.
(If you like, please see here for the first time I wrote about Anastasia, and here with an update.)

Now, on that note, I better let you go about your own day, but thanks for stopping by
Best wishes
Corina

ps. As I no longer have a Facebook or Twitter account (find it all too confusing...) but you think this Blog deserves to make a presence there, please feel free to link it on your page. Thank you!

More inspiring art and music by people with M.E.

Morning all,

Hope this finds you well on this day of rest, and social connections.
Further to my last blog about the way people with M.E. use their creative abilities to make a change in their lived and in turn in the lives of their audience, I have two more projects I'd like to tell you about.
Cusp and Lee Lee's musical adventures, and Dianne Elton's involvement with the art in Second Life.

From Cusps' website I quote the following: Many many moons ago, my dear chum Lee Lee Ingram and I were saying how much we missed being creative and how much this illness gets in the way.
Ever one to grasp the nettle (!) Lee Lee said 'Why don't you write some lyrics and I'll put a tune to them'......and from that has grown a project which has now culminated in the formation of our band Dropkick and the release of our first track 'Trapdoor'. 

They created this CD, a fun track playing homage to 70's disco, with the physical boundaries of illness and even living miles and miles apart (UK and USA) Have a listen, it will make you smile, and dance!
Watch it here on Youtube  The release date for the CD and digital download is 28 November, but is already available on pre-order! See Cusp's website or here

The other project is situated in Second Life (SL).  Dianne Elton, whom I had some wonderful adventures with in Second Life (see older blogs on this subject), is very much involved in the Arts, and has a very positive and creative influence in the Centre for ME/CFS and other invisible illnesses in SL. On this occasion she is involved in the Freedom Project in conjunction with the University of Western Australia.

From the University's SL Blog: The Freedom Project is a 2D/3D Art & Film Event organized jointly by the University of Western Australia, along with members of the Virtual Ability group, and the Centre for ME/CFS and Other Invisible Illnesses group in Second Life. We are calling for artists and film makers from all over the world who self-identify as having a disability or a chronic illness, to create an artwork or a film/machinima on the theme of ‘Freedom’, showing how virtual worlds have in some way helped them or those around them. 

During the launch of the Freedom project, Dianne talked about what SL means to her: 

"In my own case, being housebound, SL has extended my social world exponentially.  I now have many friends right around the world. No longer able to attend art galleries, I was delighted to find I could come to UWA and enjoy stunning innovative art without leaving my bed. My illness has taken away many activities I used to do in real life but as I don't have to leave my bed, I can do things in SL including attending and facilitating bookclubs, meditation and guided relaxation sessions and I can even go dancing with hubby!

This is how SL gives me “freedom”. Freedom to be active within the limitations of my health. Freedom to interact with others from the confines of my house. I am really looking forward to seeing the artworks produced for this event and to learning how SL might give others "FREEDOM". 

(The full transcript of the launch of this project and Dianne's talk is available on the University's link above.)

I hope you will have time and the interest to explore the work by Cusp, Lee Lee, and Dianne.

Again to me it shows the resilience of people who live with chronic illnesses, which so hugely impacts on their day to day living, to find ways to fulfill their desires. These are the people who inspire me, and no doubt inspire others.  

ps. As I no longer have a Facebook or Twitter account (find it all too confusing...) but if you think this Blog deserves to make a presence there, please feel free to link it on your page. Thank you!

The story of M.E in words, art, and film

...shame on me.. two months since I last wrote here. I do write blogs, but in my head, which is of little use to you all..

The past two months in a nut sell: I didn't go to college. I did go on my two week residency at Annaghmakerrig,  and have started writing my project.  More about this later at least that the intention!

But first of all I realise more and more that my experiences of living with M.E., including my art, writing, disability studies and how I experience nature and learned about its benefits, are all pointing into the direction of letting other people know what life with M.E. /chronic illness can be like.  
Of course I am not the only one.  I can think of several people who are on this road.
For now I would like to tell you about two women in particular. Anastasia Palmer and  Jennifer Brea.


Anastasia Palmer whom I featured before on this blog (see here.) is a truly amazing young woman; the evidence is in her writing and art but also in the way she wants her story to be shared.  Over the years she worked on her book Dear Stranger and I cried with joy and admiration when the book arrived.  Touching the linen cover I could feel all the energy and emotions that went into the making of this beauty of a book.

Dear Stranger is her very frank account of coming to terms with, and finding her way with, the diagnosis of M.E. written from the age of 15 till 18.  The diary entries written to a ‘dear stranger’ have a tangible rawness, anger with an ‘invisible’ illness, not always believed in by the conventional medical practice, but also a beauty, which has the ability to touch every nerve in my body; and a deep routed wisdom from a person so young.

Let the sun be my smile

The rain be my tears

The storm be my anger

The wind be my voice

So let me be

The woodcut illustrations tell her story where words are not enough.

Even after fifteen years of living with the illness, I can still learn from Anastasia. Her words make me re-live my first few years.

“…Tears are the easiest thing when you are tired.”

I find myself one with Anastasia’s sorrow and joy, but also with the thought that illness can be a gift.

After years of deliberating how to publish her story she settled on using the letterpress; hand printing 230 copies, hand-setting every letter, rolling each page through the printing press and carving every picture from wood. She does not want to sell her book in the conventional way but needs the funds to bind the remaining 210 copies to be handed to libraries the world over. 

Please visit her website to read more about her book, the woodcuts which are for sale and maybe you can help her make her wish come true.

Then in the past week or so I became aware of another young woman living with M.E.: Jennifer Brea, who has just started on a "Kickstarter" campaign for her  documentary film about M.E  called Canary in a Coal Mine.

To watch the powerful trailer see here . Amazingly with a goal of raising $50.000, they raised already almost $34.000 in less than two days. Well done Jennifer. In an email she wrote: Three years ago I became devastatingly ill. Now, there is not a single waking moment when I don't feel sick. When faced with what seemed like an insurmountable obstacle, I felt the only choice I had was to transform suffering into grace.  I believe that by telling these stories, by showing the world what it really feels like to live life with ME (“Chronic Fatigue Syndrome”), we can change forever the way the world sees this illness. And, by showing the true face of ME, maybe we can put an end to the many injustices that ignorance creates.

Like Jennifer, Anastasia, Bernadette (researching transformative illnesses), other bloggers, writers, and artists, in our own way, get the story of what living with chronic illness/M.E. can be like. 

I for one am committed to keep reading-researching-writing and creating art to do my bit.

love to you all.