Thursday, October 24, 2013

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.

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