Art and Writing by people in the Irish Myalgic Encephalomyelitis Community
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
has Severe ME and is mostly bedbound suffering from chronic debilitating
symptoms. She spends time, when she can, being creative making Irish lace and
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.
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
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.
Bernadette’s written piece via the link below and see her incredible lace and
crochet work in the images.
Maggie’ story here
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.’
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
|This is ME
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
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.
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.
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
Read Úna's full
blog post here
Another blog post from Úna about her own illness and about living with ME here
from Úna’s blog via this link here https://unahearne.com/blog/
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
“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.
(As there are subtitles throughout, the sound
can be turned off completely if you wish)
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
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.
Octopus’ - https://www.corinaduyn.com/site/poem/
from Corina here https://www.corinaduyn.com/site/writing/
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.
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
investigation into a complaint to the HSE I was asked why I lived where I did.
This was my
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.
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.
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
finch settling on a strand by the back door, cat territory, whilst it searches
for shelter & food together.
daily visitors to the areas beyond my room windows, proud, cocky, radiant
breasts & gifts from God.
tucked up snugly in their kennel, far too miserable a day for them to sit on
playing, eating, sheltering, making use of the habitat they have access to
using their natural instincts, so they are relaxed & contented.
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
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
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
perhaps another example of a culture towards disability within the HSE which
needs to be addressed?
Thanks to you all, to Bernadette,
Tricia, Úna, Corina & Christine for sharing your art & writing.