Now we’re possibly moving to a new place where we can network better it’s also an opportunity to change the name, if others feel it’s appropriate.

Here’s a reminder of what this network is about

Chronic Artists is dedicated to those creative people who have to balance their artistic practice with the challenges of life with chronic illness or pain.

They may be an artist, writer, photographer, musician or artisan. They might be severely ill or mildly affected by their chronic health condition and/or pain. They may be from anywhere in the world.

The hope is to build a network …

Also to look at some of the challenges and highlight some of the work being done by those who just happen to have chronic illness or pain …

Chronic illness and pain can make us feel isolated. Hopefully this network can let you connect with other artists who understand.

So how about a different name?  Perhaps an acronym or some great name that is not obvious.  After all Apple is a computer, Flickr is a photo site and Ford is a car.

Any suggestions?

Apologies for the lack of activity on the blog and in making the most of the network.

Quite a few people have struggled to sign up to the blog ring or to complete the process to allow their link to get added by the system.  There isn’t a way to simplify this using the current ringsurf system so my thoughts have been to move to a different way of working to create more of a network where members can post things of interest too.

I’ve had this move on the back burner for quiet a while and hence neglecting putting energies into this blog.  I felt a little overwhelmed at the idea of contacting everyone in the ring to explain the change and hadn’t even thought I could just blog about it!

So I’m hoping to make some changes in the coming months.

In the meantime if you are an artist, who also happens to have chronic illness or pain, and you would like to be included in the network and you struggle to sign up using the ringsurf system please drop me an email.  Then I can at least add you to the blogroll here.

I’ll blog details as soon as I have them of the changeover and where to find the new network.

Thanks to everyone who has signed up (or tried to!).

We have new members on the blog ring so if you haven’t checked it out recently take a look at the blogroll and see what’s new.

Pippa creates all sorts of arty stuff, from sock monkeys and scrapbooks to collage and crochet! See all her creations on her website: Pippa’s Arty Life, only a selection of what she has been up to is shown here!

Her work is bright and often spontaneous, she turns her creative eye to everything from what to wear to the bits of ice that form in the freezer!  

“I love to try new things. I don’t really have a speciality at the moment. I’m a jack of all trades and master of none… for now.”

Her art cards are all so different and express a thought, feeling or belief. They demonstrate a very good eye for detail. (See more at http://myartylife.blogspot.com/2008/05/backdated-art-cards.html)

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Pippa has ME. She had depression to begin with, then two years later, during her final year at University she developed ME. She has had ME for about two years so far. The depression has improved, but the ME has not.

She has always been interested in art and nearly studied it at university, changing to Linguistics at the last minute.

“It was during a particularly bad trough of depression in my second year of university that I decided to take a wee break from essays (just a few days) to do something I wanted to do. I ended up getting some ceramic paints and painting some mugs. I found the whole process so therapeutic and found something so healing about creating. I then got into card-making and tried a bit of glass-painting. I found these little crafts so helpful in lifting my spirits. By my third and final year of university, I was also making jewellery and selling my handmade cards. Every so often I made sure that I took some time out when things got too hard. On one ‘day off from life’, I painted a sunset onto a big canvas – that cheered me up no end.”

And here is that sunset: 

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Since getting married just over a year ago, things have changed a lot. She relies heavily on her husband for household and caring tasks, but having this help has allowed her to go from making things just to amuse herself, to blogging about it, to opening her own online shop!

“If I hadn’t have been ill then I wouldn’t have had the time to start a blog – or do so many arty crafty things. I think I would have ended up pursuing the money-driven career of so many other graduates. Being ill has forced me to take time out and think about what I really want to do and what I enjoy doing; creating is one of the few things I can actually do right now.”

VSA Arts has an online exhibition of Art, Disability & Expression.

As well as showing many examples of visual art it also examines some of the history and culture of disability as content.  There are some powerful and fine images in the exhibition.

VSA Arts has an Artists Registry which is free to join. Represented on the registry are artists with many kinds of disabilities including chronic illness, chronic pain and long term mental illness.

The web site also has many resources for artists on the site including opportunities, career development tips (including advice on photographing work, pricing, sample contracts and more), various publications and resources for materials, adaptive tools and instruments.

Did you know that Renoir battled with rheumatoid arthritis for the last 30 years of his life?

By the last ten years of Pierre-Auguste Renoir’s life he could not use crutches and needed a wheelchair. He had excruiating pain and near the end of his life had to be carried to his easel.  When he lost the use of his fingers a paintbrush would be bandaged to his hand and he continued to paint despite his devastating illness.

La Promenade by Pierre-Auguste Renoir, 1906

La Promenade by Pierre-Auguste Renoir, 1906

There’s a great article here which tells you more about his struggle with rheumatoid arthritis through the last 3 decades of his life http://arthritis.about.com/od/art/a/renoir.htm

Madame Renoir and Bob by Pierre-Auguste Renoir, 1910

Madame Renoir and Bob by Pierre-Auguste Renoir, 1910

 The following is an extract from that article:

“One must from time to time attempt things that are beyond one’s capacity.” ~ Pierre-Auguste Renoir

There were episodes when Renoir was completely paralyzed. He would allow the attack to subside, then continue where he left off at his easel. Renoir had an easel where each canvas could be rolled up like a woven product in a loom. Therefore he could cope with larger formats even though he had to sit in his wheelchair and could only move his arm in short, sudden motions to thrust the paintbrush forward.

Read the original article

And another extract:

“The pain passes, but the beauty remains.” ~ Pierre-Auguste Renoir

It has been said that although Renoir was old, sick, and decrepit there was never any despair or weariness in his art. He never allowed it to be invaded by feelings of envy or anger towards those in good health. The hundreds of works he produced during the last few years of his life were an ode to happiness and joy.

Read the original article

Laundresses by Pierre-Auguste Renoir, 1912
Laundresses by Pierre-Auguste Renoir, 1912

 All the paintings shown here were painted by Renoir when he had rheumatoid arthritis.

“For me a picture has to be something pleasant, delightful, and pretty – yes, pretty. There are enough unpleasant things in the world without us producing even more.” ~ Pierre-Auguste Renoir

I don’t usually read books about ME. I find it incredibly hard work reading about the experiences of other people who have the same illness as I do, as it is just too emotionally draining.

Reading “The State of Me” though, was a pleasure. It is moving but not over sentimental, and engrossing and very witty at the same time. At the start of the book, I thought that she had only skimmed the surface and that there was so much more to say, in order that people will understand what having this illness is really like. I thought she had not given very specific descriptions of symptoms, only the overall feelings.

As I read on, however, I discovered the way that she has managed to encapsulate the myriad experiences of this illness in a subtle and understated way. I can relate to several aspects of the story and of Helen’s experiences, and while not going into every gory detail of the illness itself (and probably boring the readership) she very skilfully portrays the devastation the illness wreaks on a life. I was amazed that anyone could do this: to represent the monotony of feeling ill all the time, the feeling of being at a complete standstill, of life passing you by, of living at a different pace to everyone else and watching other people living more interesting lives… Jafry makes it into a page turner!

What an achievement. I read it far too quickly and then spent days recovering from the exertion, but I could not put it down: I just devoured it. It made me laugh and it didn’t depress me at all. I felt uplifted at the end that someone with ME had managed to write such an amazing book and had managed to weave into it all aspects of living with ME: the lack of medical support, the pressure on personal and family relationships, losing your identity, the difficulty of explaining to people and being believed, the politics, the delicate balance of accepting the situation but holding onto hope that things will get better…

More than these things though, I enjoyed the way it was written. One example which has stayed with me is her description of “headaches like helmets”. I remember in school being taught that the simile was the inferior version of a metaphor, only to be used when you were not clever enough to think of the latter, but Jafry has proved my teachers wrong! Jafry is brilliant at succinct description such as this; the alliteration only drumming in further how horrible, harsh and hard to cope with these heavy helmet headaches really are.

I did find the part about the diagnosis stage where Helen gets lots of medical tests (such as a muscle biopsy) which find various abnormalities quite unlike my own experience or that of anyone I know (we get standard blood tests which come back as “in the normal range” and that is that). It does serve a purpose in the book though, to demonstrate to readers that know nothing about the condition that there are tests that can be done that do show abnormalities and it reinforces that it is a physical illness.

Jafry has a recurring conversation with a stranger through the book, which I think was inspired. It gives a potential outsider’s perspective and also provides the chance to enlighten the stranger (and the reader) in a way that we do not usually get the chance to do. These responses to the stranger’s questions/comments are well thought out and are often more like what you wished you had said, when reflecting back on a conversation later! Things that strangers have said to me have felt very significant and have stayed with me for a long time afterwards… it always amazes me the ridiculous things people say, but also how we can be affected by them.

I was pleased that by the end of the book Helen had not made a total recovery as this would have been so unlike the reality of so many people’s experiences. Her health could still go either way, as could her relationship; both are looking more promising but nothing is perfect! Although it is fairly traditional “happy ending” in many ways, it is so unexpected from events earlier in the book, that you are genuinely so pleased things seem to be working out. I really bonded with the characters, warts and all, and think that they were very skilfully and believably written.

I could give so many examples of funny and well written parts of this novel, but I have not quoted from it much as I want people to read her words fresh for the first time and in context. I kept my discussion of the ending as unspecific as I could whilst giving the compliments that I felt were only right. All I can say is go and read it! Which I may go and do again very soon, and with my limited energy I don’t often read anything twice, so that has to be the biggest compliment I could give… Nasim Marie Jafry, well done!

By Guest Blogger: Sarah Marie Lacy, Artist http://www.smlacyart.com

That Oddball Marriage: Creativity and Illness

I’ll be honest – when Rachel first asked me to write a post about how being chronically ill affected my creativity, I drew a complete blank. I had no idea if the two even interacted, let alone affected each other. I know it seems obvious, that of course one affected the other, but it really was something that I’d never thought about before. I assumed that the two couldn’t interact – disease seems to take away from life, while creativity celebrates it. It seemed baffling enough that the two could co-exist, let alone unite.

So while I’ve always known that art was my lifeline, I wasn’t really sure if the opposite had happened – if being sick had affected how I created. But the more I contemplated it, the more I became certain that getting sick has had a strong hand in developing my creative vision. I rarely paint happy scenes, full of (to me) sickeningly sentimental themes. I will never be another Thomas Kinkade, http://www.thomaskinkade.com, or Trisha Romance, http://www.trisharomance.com (No offense to them – they can do it, people love it. It’s a win-win situation). But it didn’t ring true to me. It didn’t resonate. I’m drawn to stark views, lonely scenes and moody atmospheres. I look for delicacy, fragility and subtlety. I look for understatement and minimalism. And I always look for some sense of hope – usually blue sky breaking through storm clouds. I didn’t even realize until a few months ago that I did that. Happy, safe paintings never seemed to come from my brush because it seemed so at odds with my own life. It felt like a lie. I’m drawn to the broken, and the lonely, the transient and the fragile

And yet I’ve always searched for hope, because I think I am a natural optimist (admittedly it doesn’t always show). I want to believe in something better, a brighter day as they would say. I find myself searching for the beautiful in the broken, maybe in an attempt to make sense of my own experiences with the less than sunny side of life. I want to transform the unhappy into the exquisite. You can’t erase terrible circumstances or experiences but I believe that you can transform them. You can’t make them happy, but maybe you can heal them. Maybe you can make them beautiful. It’s about learning to appreciate all of life, the good and the bad, for the sheer fact that you are alive.

And my creativity has affected my illness as well. Ever since I made the decision to be a full time artist and put that first, my health has improved, to the extent that I am much better than I ever could have envisioned. I still have sick days and weeks but they are usually short and mostly happen when I am distracted from what I love and don’t take care of myself as well. Sometimes I feel like I’m walking a path, one that reveals itself one step at a time. I realize that sounds a little crazy. To quote the cliché, I’m “following my heart”. Cheesy but true. And I feel like as long as I’m doing that, the Universe will help me out (I realize that I am now completely off topic).

I suppose then that the answer is yes, my illness did affect my creativity, but not in a bad way – in a very good way in fact; a healing way. And for that, I am eternally grateful.

About Sarah Marie Lacy: A self taught artist, Sarah Marie Lacy works in acrylic on canvas to create emotional paintings of the English landscape and people.  Diagnosed in 2001 with Chronic Fatigue Syndrome and Fibromyalgia, Sarah has fought back from illness, depression and suicide to pursue her art. She is now focused on painting and sharing her story with others in the hopes of inspiring them to live their best life. Aside from preparing for exhibitions, this prize-winning artist also works on commission. Prints are available for selected pieces. For more information, log on to http://www.smlacyart.com, or email smlacyart@hotmail.com.

Rachel M does not consider herself to be an artist as such, but her creative activities are very important to her. She lives in “survival mode” most of the time due to severe ME/CFS, and finds that to notice and capture happenings or feelings with words or photographs, serves as a coping tool and allows her to focus on and remember these precious moments.

Sometimes she is so ill that her brain won’t work properly and it took her 5 minutes to remember how to turn on the camera, in order to take a picture of the beautiful rainbow coloured Lorikeets that visit her garden.

Rachel  M loves to write haiku and finds that this art form suits her short attention span and energy levels, she finds that she thinks in terms of “Haiku moments” to describe a special sight or experience, even if the poem never gets written. This helps her to focus on the small positive or beautiful things that may happen in a day, rather than her limitations and ill health.

“Technically, I can have a Haiku moment even when I lay in my bed as long as i can use my imagination.” 

She has to take opportunities to be creative when they arise, for example, when her sleep cycles are reversed and she is awake in the night, she has photographed the dawn and dusk, and also wrote about them, creating an effective pairing of word and image.

Dawn

 

I love witnessing the beginning of new day.

Although it is complete serenity,

the whole universe is filled with energy that is about to burst.

The noise from highway carried by the breeze.

Thick orchestra of crickets.

Different birds are singing their first song of the day.

Between dark sky and black shadow of mountain,

there is a dash of orange light.

 

 

 

 

I just have to take a deep breath to feel the fresh air.

 

Dusk

 Royal, Denim, then Midnight Blue

Dusk of magic that gives me peace

Household noise, smell of summer

Her blog is where she tries to visually capture happiness and peace in her life with severe ME/CFS. She is always searching for the perfect Shade of Blue, and drinks from her blue coffee mug while she ponders this quest…

Alvason is a photographer with CFS.

I have had chronic fatigue for ten years now. Someone asked me recently how I deal with a chronic illness. I replied that I have an optimistic outlook and I believe things will get better for me and one day I will be if not cured, at least fitter than I am now and the illness will be more manageable. source

Photo by Alvason

Photo by Alvason

I still love fiddling with optical stiff – cameras especially, I have some old ones, the film kind, 20 years old and more where you fiddle with knobs and buttons and focus – focus! – back to the telescope, yay! – and everything is manual. The joy is in the process. My wife likes to ask me if the landscape has stopped moving yet (not the same as “did the earth move for you?”), as I compose the shot and look at aperture, speed etc. source

Photo by Alvason

Photo by Alvason

Alvason is one of the artists who features in the Creative For A Second book.

I’m proud to have contributed to an exciting project called Creative For A Second – bringing together the artistic work of some fellow-sufferers of Chronic Fatigue Syndrome (CFS/ME/CFIDS/Fibromyalgia). source

He also draws from time to time.

Image by Alvason

Image by Alvason

Find out more about Alvason at his blog http://alvason.wordpress.com and on his Flickr photostream.

NMJ (Nasim Marie Jafry) of Velo-Gubbed Legs has just had her debut novel published. It’s called The State of Me and draws on the author’s own experience of life with ME.

The central character is a 20 year old student struck down by a mystery illness which leaves her debilitated and bed-ridden.

“She is eventually diagnosed with M.E, a cruel illness that she must learn to live with over the next decade. All of her relationships are tested and changed by her condition, but Helen s story is so much more than an account of her suffering. Far from it.
The State of Me explores the loneliness and chaos of one of the most misunderstood illnesses of our time, but also celebrates the importance of family, friendships, and sexual love.”

Available from Amazon UK and Amazon.com and I imagine lots of other bookstores too (ISBN 1906321051)

Read more about the novel and the author on her blog.