Coronation Street actress Cherylee Houston is a chronic pain sufferer who uses creativity as a distraction from her condition. As pain is a topic rarely discussed publicly, Cherylee sets off on a journey to meet other pain sufferers in order to find out how pain impacts on their creative work. Does pain always have to be a bad thing or can it actually enable creative thought? With contributions from singer songwriter Emily Maguire, writer Jack Thorne, artistic director Elizabeth Newman, performance artist Martin O Brien and pain specialist Professor Anthony Jones.
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.
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.
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!
Jennifer wrote: The M.E./Canary in a Coal Mine segment on Al Jazeera's America Tonight is now live online. It's an incredibly empathic piece and perhaps one of the first times in U.S. cable network history the word "Myalgic Encephalomyelitis" has been mentioned on air – the first of many!"
Watch PART 1 and PART 2
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!
...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.
