Creative Journeys Through Myalgic Encephalomyelitis (ME)

Art and Writing by people in the Irish Myalgic Encephalomyelitis Community

As part of May International ME Awareness 2022 we recognise and celebrate creative pieces by people in the Irish ME Community, people who have found new ways of being and of being creative while living with ME and who also help raise awareness and share information about ME via their art and/or writings

 

 

 

Bernadette Morris

 

Bernadette has Severe ME and is mostly bedbound suffering from chronic debilitating symptoms. She spends time, when she can, being creative making Irish lace and crochet.

 

“Doing art, crochet lace, writing and partaking in zoom webinars when I can are all attempts to preserve a modicum of sanity and feed my soul. But, all of these cause various degrees of hardships to my severely inflamed brain. I am now never free from headaches. But I’m still so enthusiastic about creativity, poetry, music, sport, family-history, justice, truth, preservation of our planet. I have always been a communicator, a lover of nature, a creative/expressive crazy hippie!!! So being bedbound is a curiosity and a penance for me which I have to embrace. I sow a few seeds in a tray with my grandson and I feel my connection to nature… they go to live outside in our garden… I can’t follow them.

I make lace or crochet as gifts for my family, my grandchildren. That takes weeks to complete. But, that’s satisfying. And even if my ability to walk and stand is greatly diminished, . . . . . I have a lot of discomfort and pain . . . . . I am alive, so I am grateful for that and healing is a possibility if I refuse to give up.”

 

Bernadette has written a story entitled ‘Lace and Maggie’ to explain how her recent Irish Crochet Lace making came about and to tell us about the wonderful creative person who inspired her incredible work, i.e., her long lost relative Marguerite Jane Finneran, also known as Maggie, who was born 130 years ago on the 28th of April 1892.

Please read Bernadette’s written piece via the link below and see her incredible lace and crochet work in the images.

 

‘Lace and Maggie’  story here

 

Bernadette’s Carrickmacross Lace.

The final image of needlework by Bernadette is a Lace piece. Bernadette says

‘It is so hard on the eyes. The needles are tiny, and the amount of time required to make a piece is crazy! They were bloody geniuses these women [who produced Carrickmacross Lace]. They produced big quantities of this for export and paid near to nothing.. it’s a fascinating part of Irish woman’s history.’

 

 

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Tricia Collins

 

“This is ME.  I used clay as a way of exploring and accepting ME and the emotions around it and this was one of the pieces that emerged.”

 

This is ME

Tricia Collins who suffers from ME works with clay to produce clay sculpture. Tricia has also written a piece about how her sculpting with clay came about.

“Part of what brought me to clay was living with a chronic condition called ME. I needed something that would give me an outlet. That it would be part of helping me to get my head around ME and accept the emotions and limitations of living with a chronic health condition I hadn’t expected. Yet this is what it did. In helping me to come to terms with where I was, I credit it with in part helping me to move on to a place where ME was still a part of my life but where I now felt more in control. 

A few years after starting ceramics my health began to improve but I realised I had a vat of emotions inside of me, emotions I couldn’t express. I felt confused and angry at what ME was and had taken from me and needed to explore and express what ME was and meant for me. My gut was telling me I needed something more than words, I needed something physical I could shape and mould, something tactile I could feel and let my emotions into. And so a lump of clay became my medium."

Please see image of one of Tricia’s Clay pieces 'I am ME' above and the read the rest of Tricia’s story here

 

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Úna Hearne

 

‘Accepting difficult circumstances is not easy. But my goodness it’s a peaceful place to get to. Definitely worth the effort.’

 

Úna was 16 years old, heading for art college with a head full of dreams. She came down with Mono and never properly recovered. She was diagnosed with ME and as she says herself her adult life was scuppered before it began. She was unable to work for her entire twenties but luckily she recovered enough to work throughout her 30s and 40s, albeit constantly exhausted and sleeping most of the time she wasn’t working.  Because of the stigma she had no contact with other people with ME. She didn’t know about pacing. Passionate about her work as a life coach, she pushed through the exhaustion every day until her body finally gave up, she relapsed badly at the end of 2015. Úna says if ME hadn’t been taboo she might not have been so alone and with the care of a knowledgeable doctor she might not have relapsed. Úna has had ME for Forty years now, that’s her entire adult life.

Úna has shared some of her writing with the ME community these last few years. Her written work inspired by her job as a life coach has been very welcome by others in the ME community via her blog, ‘Úna’s Blog – Úna’s Little World’. You can read a couple of her blog posts below via the blog links. The first piece we are sharing is to do with accepting the unacceptable.

 

“ 'IT'S NOT FAIR!' 'IT SHOULDN'T BE HAPPENING TO ME!!'  You wouldn't blame me for thinking this since I am currently obliged to spend 20 hours a day lying down and I can only do a fraction of the things I want to. I wouldn't blame you for thinking the same about problems you might be facing: money, work, health or relationships ('THEY SHOULDN'T BE TREATING ME THIS WAY!') Understandable thoughts and feelings. Unfortunately, this is called resistance. Resistance to the reality you find yourself in. It's the opposite of acceptance.”

Read Úna's full blog post here

 

 

Another blog post from Úna about her own illness and about living with ME here

 

Read more from Úna’s blog via this link here https://unahearne.com/blog/

 

 

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Corina Duyn

Corina is an artist, writer and puppet designer. Corina trained as a nurse and social care worker in her native Netherlands before moving to Ireland in 1989. An artist and puppet designer, Corina has been exploring the internal landscape of illness in her work since she was diagnosed with Myalgic Encephalomyelitis (M.E.) in 1998. The start of illness in 1998 changed her work exploring the internal landscape of illness, living life creatively with Myalgic Encephalomyelitis (ME) and coming back full circle again to making puppets. As illness took more of a toll on her creative life, she explored shadow puppetry accompanied by poetry during 2020.

A year later she moved into full time care which also changed the direction of her creative work.

 

“The Power of the Puppet” is a video lecture by our own Corina Duyn documenting her 23 year-long creative journey through chronic illness. The lecture focuses on her puppetry work. 

“The Power of the Puppet” Video-Lecture is available on youtube and on Arts+Health website

 (As there are subtitles throughout, the sound can be turned off completely if you wish)

 

 

Corina’s written work follows her journey as artist, writer and puppet designer. Her creative story goes from the first rag doll made at the age of ten, 50 years ago, to the Fantasy Folk Artist Dolls inspired by the Irish landscape, and then on to her puppetry work. Read more from Corina about her journey via her website here https://www.corinaduyn.com/site/

 

 

 

Poetry by Corina

Corina has produced poetry based on her life with ME. See one of Corina’s poems, part of her Invisible Octopus Project – a poem, a story, an animation, of a life triumphant under the weight of a debilitating illness ME. The shadow puppetry imagery highlight further the stark reality of life with ME.

‘Invisible Octopus’ - https://www.corinaduyn.com/site/poem/

 

 

More writing from Corina here https://www.corinaduyn.com/site/writing/

 

 

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Christine Fenton

 

The final piece of writing we are sharing is from Christine Fenton. Christine who has Severe ME has written enormous amounts of documents and correspondence in her dealings with the HSE on behalf of herself and others needing support in their dealings with the HSE and issues re provision of much needed services. Christine has provided much support to others and has a command of HSE-land like no one else we know. In her written piece Christine accurately describes the wonderful environment in the countryside where she lives, in a response to a ridiculous question by HSE staff.

 

‘Response’

‘HSE staff had ‘told’ me I should move into town where it was easier to provide care and as shops were closer I assume they believed I’d need less care from their budget.

 

During an investigation into a complaint to the HSE I was asked why I lived where I did.

 

This was my response.

 

This morning the day is miserable, wet, dull, cold. 

 

Yet I have two  6' 'television screens' to the world outside, my French doors & the window by my bed. 

 

No sound other than that of rain hitting the ground & movement seen is the movement of trees, grass, birds, animals, nature's movement created by the natural forces of wind, light & dark.

 

Yet I have had the joy of seeing a flock of some seventy wild geese, mature & this years young, colours white & brown, grazing safely only 30 feet from the house.  That these birds regard this area, so close to a human habitation as 'safe' is a gift to me.

 

The hen pheasant at the end of the drive to the house, she is here daily with her beautifully coloured mate & wanders around fearlessly just outside the normal 'cat zone'.

 

One mouse in the trap today, a baby, well fed on chocolate, feta cheese & nuts before being released into a cold wet world where it takes its chances in the world of natural predators.

 

The bull finch settling on a strand by the back door, cat territory, whilst it searches for shelter & food together.

 

My robins, daily visitors to the areas beyond my room windows, proud, cocky, radiant breasts & gifts from God.

 

The cats, tucked up snugly in their kennel, far too miserable a day for them to sit on the windowsill.

 

The horses, playing, eating, sheltering, making use of the habitat they have access to using their natural instincts, so they are relaxed & contented.

 

The dogs, far too miserable a day for them to want to go out. Emma is my hot water bottle.  The secure dog areas allow them to play out but I don't have to walk them, they exercise & play as they choose.

 

The rainbow's end just by the barn.  The waves scudding on the lake.  The changing colours in the expanse of sky.

 

Why would I, someone who spends so much time in one room, choose to give this treasure trove of beauty & joy up, to live in a box in a populated area & lose 'my world' because there are those who judge my life, without understanding who I am, & decide I should be different.

 

I am who I am, I am a person to be valued, as we all are.  Our differences are to be embraced as they create the richness of the human race.

 

Am I entitled to judge why an HSE employee lives & travels long distances to work - any attempt to do this would be utterly inappropriate?

 

Why then are others, unless they are caring friends or close family, entitled to question my life choices without discussing it with me & taking the time to learn who I am?

 

Is this perhaps another example of a culture towards disability within the HSE which needs to be addressed?

 

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Thanks to you all, to Bernadette, Tricia, Úna, Corina & Christine for sharing your art & writing.