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.