Saturday, December 10, 2016

Christmas time while living with chronic illness

Christmas poems by Corina Duyn from her book Hatched
page from Hatched 

Christmas is almost upon us.  A time of sharing. A time of memories past, and yet to be made. A time of celebration. Of love, fun and kindness. But - looking at it from the view point of someone living with chronic illness - for some this time can also be a time of worry.

My Christmas times are quiet, and I like them that way.

But I know that for many it can be a challenge not to go along with the 'norm'. To not feel the pressure to pretend to be well.

There might be worry about shopping, about buying presents, about travel, about organising food. The financial burden.

The thought of being in the company of many others when really you can only cope with one or two people around you at the one time, might already bring stress.
The worry about going over the precious energy levels and ending up with a relapse. The accompanying thought: "Is it worth it?" It might well be!
Christmas poems by Corina Duyn from her book Hatched
page from Hatched 

When one is well for a short time, 'others' might think that you can always be that well, and that you are 'faking' illness.
How, or can one stand up for ones needs? Concerns on how others would react to those needs.

These are real pressures for some, and it can be a huge challenge to not get drawn into situation you don't want to be in.

Those of you who live with chronic illness, or are in constant pain, I truly wish that you are able to carve out me time, and stand up for what is important to you.

Hard, I know...

I truly hope that you find some time to value the true sense of Christmas. Not get drawn into the madness.
Enjoy the light- the festival of light.
Enjoy the company- for as much as you can manage.

Maybe see if you can simplify your Christmas preparations.
Friends and family, hopefully, value your presence more than they would like a bought gift.
Share a friendly smile.  A listening ear. A hug. Write a letter, a short note of thanks...

Plan ahead: creating a balance of the time spend with others, and time in solitude.

My health has improved a great deal since writing these poems which are from my book Hatched- a creative journey through M.E. More able to be out of the house more often and have some level of independence. But even so, I still like to focus on the simply things of Christmas...

Lots of love to you all.
I am thinking of you.

Christmas related Links you might like:

A fun fun abstract from the Cirrus Chronicles:
'Santa Man' 
Read abstract here. The book available to purchase here

The poems on this blog page are from Hatched,
which is now available as e-book (PDF format),
here  for €3.99. 

A previous Christmas themed post

Wednesday, December 7, 2016

Hope: Finding courage within the weakness

HOPE Quote from  Into the Light by Corina Duyn
Quote from
Into the Light by Corina Duyn

Keeping the thoughts on Hope. And Trust. And finding the space in one's head for the beautiful and the challenging...

It always takes me a while to be brave enough to listen back to my own words spoken during an interview or talk ... But today I finally found this courage and the head-space to listen to podcast of the interview, or more precisely, a leisurely talk, recorded on the 24th November with Bernadette and Stan Philips on 'World in View' -Tramore Community Radio.
See MixCloud link at bottom of page.

The chat was a beautiful exchange of thoughts about art, life, illness, disability, nature, (Zen) poetry, ability, boxes and getting out of them, eggs, presence, puppets, the importance of Fun, strength, transition into disability, new beginnings, and changing attitudes...

The chat flowed freely and I think we could have chatted for a lot longer, given the time. The view of the sea from this radio station made it all the more special.

Towards the end Bernadette read out a quote from my Into the Light  book-  about finding yourself in those moments where you know what you are doing is exactly right for you... and thoughts about Hope. (see quote in image).
... Hope with the capital H, where one sees the bigger picture of one's role in life - I was told, and I can see it now, that yes, I have found that place of Trust - of knowing my role in this world of illness and disability, and being an advocate about Ability.

The experience of the Dis-ability ... This Ability exhibition has - for me personally- been an experience of growth. Thank you Grace O'Sullivan for your words at the opening talk, and Bernadette and Stan for the amazing and easy chat, for helping me to Trust
I will endeavour to remind myself of this in times when I am a bit 'rattled' by circumstances, and unsure on how to handle them.

One such challenge came a week after the radio chat.

...  a display in disarray.
When I arrived at the Cultural centre to pack up the exhibition on the 1st December I was rather shocked (to say it mildly) by the state of the show. The exhibition had changed from an exhibit of 'stories' to what looked like a badly organised store-room.

I became aware that the puppets and tables with our books had been moved to accommodate a gig on Friday 25th.
Which is fine...
Although the puppets were returned to their previous location, they seemed to have been handled in an unkindly and thoughtless manner. They were thrown into, or on, their boxes.  The tables with books, prints etc were left in the back of the gallery. Open boxes with plastic wrapping flowing out of them on the floor where our book displays had been.

Seeing our exhibition in this way made me so incredibly sad. And I am embarrassed that people who came to see the exhibition, which had received such great publicity and kindness, would have seen a place in disarray.

For the past week I have tried hard to make sense of it all. To not let this strange event blithe the overall beautiful, positive and empowering experience.
To keep seeing the Bigger Picture.
To Trust.
Trust that all is well.
To still see the Hope with the Capital H. To find my courage within this weakness. Or perhaps also seeing someone else's weakness in their inability to see that, for the last 5 days of the exhibition, that there was something seriously wrong with the display...

After writing to the art centre, I have received an apology, and am assured that this will never happen again, and that they can learn from the experience.

I suppose the most challenging to get my head around was (is) that the whole point of the exhibition was  about Ability - about stepping out of boxes - and yet this exhibition ending had a visual aspect of being thrown in the boxes again.
I know this was not a deliberate act, but an unfortunate result.

To finish on a lighter note... two of the puppets - my own: The Reporter, and Miriam's Monk had their string completely entangled. An interesting side effect.

Reporting and Mindfulness all tangled up.

Seeing the bigger picture.

Trust and Hope.
Finding Courage within the weakness.

Thank you to all of you who have visited the exhibition, who have encouraged me through social media, through email, messages and phonecalls. For practical support and for believing in the thoughts behind this exhibition. My deepest gratitude.

Now, please make yourself a cup of tea and join us for a chat!
My interview proper starts at about 9.30 minutes in, but if you have the time, please listen to the whole program as it is all related and interesting.


My books mentioned in the interview.

Talk by Grace O'Sullivan

Tuesday, December 6, 2016

Housebound but homeless

e-book available here
Page from Hatched now available as e-book 

During my first year of illness, I found myself housebound and  facing homelessness at the same time.  I had one night left in rented accomodation. This experience will never leave me. 

In the Ireland of today homelessness is a BIG problem. It breaks my heart that people are sleeping out in the cold. That some feel that this is safer to be outside than staying at a dedicated hostel, out of fear of those who stay there have used drugs or alcohol.
Homeless people sleeping in doorways of shops, where all the commercial Christmas 'stuff' is displayed in all it's glory behind them.
A bigger contradiction can not be found.

Google 'Irish homelessness' and about 518.000 results come up...

My own story with a 'brush with homelesness' is that in the first year of being ill I staying in friend's houses until I found a flat in the centre of town. The drawback was that it was upstairs.
I used only the first floor and had my bed in the living room. But it was warm and I was in town.

The local librarian Evelyn Coady shared this memory at the Hatched Booklaunch in Lismore in June of 2006: "Dropping an audio book in to Corina back in 1999 I was horrified to see the wheelchair abandoned at the bottom of a steep staircase – Like Rapunzel incarcerated in her ivory tower Corina was trapped – trapped in a body unsure how to function – trapped – trapped full stop.
“Housebound but Homeless”
I was under the impression that I had this flat on a long term basis. But the landlord came up one day and said that he needed it for a holiday let. More money no doubt for those few weeks, but the rest of the year the place would be empty. 
My friends and carers were angry. Very angry. 
My belongings were packed up around me, and plans were made to bring me to the county council offices to have me sleep in their hallway, out of protest. Other plans were to stay at a B&B... There were various Council houses vacant in the town, one even with a ramp for wheelchair use... Empty for at least a year... But due to local elections no houses were given out until after the elections. To make a long, painful story, short, I received a letter in the post the day before I had to vacate my flat. My new homehelp was with me when the post arrived, and as by miracle, my new home was across the road from hers.
Every time I read or hear about homelessness, I recall this event. 
Homelessness should not be as big a problem as it is. Even again today in this little town where I live there are empty houses. Some for months, maybe a year... I can imagine that this is not just happening in our town.

There are many organizations in Ireland to support people who are homeless, or at the brink of becoming homeless.  For example Focus Ireland  or the Simon community 

Part of the Bag of Hope
I am not able to help them in a 'hands on' way, but every year I make donations in stead of buying gifts. This year I also made a Bag of Hope, a rather large version of the more familiar Shoe Box Appeal. I filled a bag with a full set of clothing, shoes, socks, jacket, hat and gloves, toiletries, book, notebook and pens, a few snacks, etc. A reader of my Facebook Post, created a bag too. She even included a small sewing kit, and a colouring book. Another friend brought the bags to Cork.
I hope that these small gestures made a bit of a difference in someones day.

Another way I hope to do my bit this year is by making donations from sales of my book. 
See the Little Wings Christmas Appeal on how to get involved,
 if you would like to help me help others.

I feel immensely fortunate to have a house.
To have a roof over my head.
To have clothes, shoes, food, heat. 
To have a warm bed to get into.

is too small a word 
for today.

Monday, December 5, 2016

The magic of Christmas is through sharing

Dear Friends,

I hope this finds you well.

My thoughts during these (frenzied) pre-Christmas-shopping-days go to those 
people who have no home - who are living in hotels, hostels, shelters, or on the streets. And to
 the children in these situations, or those young souls who need our support to simply be a child.
And to adults and children who are living with the challenges of illness.

With this in mind, I am making donations in various ways: 

  • 25% of proceeds of orders for Into the Light books, or prints, or original sculptures will go to Focus Ireland. 

    “Focus Ireland helps prevent families, young people and individuals from having to first experience homelessness if possible. For those currently experiencing homelessness, they identify the best available supports and options to aid them on their journey out of homelessness”.
  • I will match each order of Cirrus Chronicles– Landing in Ballynelligan for a Children’s group of your choice, for example Barnados, with an extra copy of the book, and a copy 'Flying on Little Wings'. I will pay for the postage.

    “Barnardos is a children’s charity. They work with vulnerable children and their families in Ireland and campaign for the rights of all children”.
  • And those of you who would like to support their local hospice or health clinic with the Into the Light Care Box (which has a set of laminated pages specifically designed for use in hospital/hospice/complementary clinic/care centre/GP etc), I will acknowledge your kindness with the box, and will cover the cost of postage. The true cost of this version is €60, but through sponsorship has been reduced to €40. 

  See all the details on how to get involved HERE

Thank you for your kindness this Christmas.

Thank you for helping me to help others.
Or by finding other ways to support the people who need us the most at this time of the year -
through funds, clothing, practical support and kindness.
With every best wish to you and all.

Monday, November 28, 2016

Waterford Crystal, a blast from the past

A little bit of history...
Some images of the making of the Waterford Crystal Folk in 1997/8. This project came up during the interview at TCRfm last week. (about 14 minutes in)

The making of the Waterford Crystal Folks in 1997 Photo by Frank Miller- Irish Times
The making of the Waterford Crystal Folks in 1997
Photo by Frank Miller- Irish Times
My biggest and also last Corporate commissions before I got ill in 1998, was for Waterford Crystal. I re-created the workers and their skills in miniature. The Dolls were about 30cm height.

During this time I was given access to all the different parts of the factory. From the glass blowers, the woman at the kiln, the cutters, the packers. My then partner and I made the machines and tools all to scale.
The Waterford Crystal artists made me a set of all the stages of glass in scale with the dolls.

one of the Waterford Crystal glass  made to scale of the Corina Duyn's dolls.
one of the Waterford Crystal cut glass
made to scale of the dolls.
A huge project. All very exciting. 

It was displayed in the visitor centre for a few years.

Full display of my Waterford Crystal workers at the visitor centre in the late '90's

article in Crystal Clear about the project 
article in Crystal Clear about the project 
When it was dismantled before the closing down of the factory, I was given back the dolls.
Unfortunatelly, most of the glass went 'missing', apart from the one piece I have.

I have a three of the ex-Waterford Crystal workers in my studio -  now reading the newspapers or playing music, one of them still wearing it's protective clothing.

The three men are available for sale (see photo). The woman now lives in Kerry! The others workers, I think, are enjoying retirement in County Westmeath.

If you are interested in purchasing any of these guys, I take an offer of €60, including of postage. Please contact me 
Waterford Crystal  ex-workers for sale. Contact Corina
update: The worker on the left, still in work gear is going to live in Dungarvan.

Sunday, November 27, 2016

Radio and Blog as communication tools

What a week it has been ...
A week of learning and accepting, of beauty and annoyance, of extreme tiredness, pure joy and big smiles. 
A week in which I was told - again-  to not give up on the path I am on, and that I Rock :-)

It started off with art student Phyllis coming for work experience. A sharing of skills and knowledge: I have support to do some experimental work on my animation project, in turn I give guidance with the sculptural work for her course.

The World in View, Tramore Community Radio
After the interview on TCRfm
with Bernadette and Stan Phillips.
image from facebook page

On Tuesday I received a phone call from Bernadette Phillips, while she was visiting the Dis-ability ... This Ability exhibition.  Bernadette persuaded me to travel to Tramore on Thursday to be interviewed on their 'World in View'  program on Tramore Community Radio.
I was honoured to be asked, but also concerned about travelling two days in a row as unfortunately I had a hospital appointment on Wednesday which made me yet again experience the wasteful-workings-of-the-HSE ... I will write about that later, as it would spoil the beauty of the other happenings this week!

I am SO glad that Bernadette did not settle for having an interview conducted over the phone...
Yes it was a challenge to get up on Thursday morning while feeling quite ill with tiredness, even though I had been in bed and on the couch for almost twenty hours. Painkillers, a shower, meditation and a conviction that this was an opportunity not to be missed, I was driven to Tramore. Yet again the weather played its part and granted me with stunning views of mountains and the sea. 
Even the studio has a view over the beach and sea!

The connection that was made with Bernadette during our initial phonecall certainly continued when we met. The energy of Bernadette and husband Stan, who run the radio program together, is just simply beautiful.  They are people who are absolutely grounded in spirituality, in nature, in love of life, in understanding of life. What a privilege to be in their company, to talk with them about my journey through life and illness. About art and writing, disability and the exhibition. To received encouragement, or maybe their 'push' to not deviate from the path I am currently on: to share with 'the world' the Ability of people with dis-abilities. To share my story. Bernadette- like Grace O'Sullivan at the opening talk looked me straight into my eyes when saying this... Thank you! Thank you also to the listeners who commented with such positivity on the interview.

The half hour interview is available as podcast . My interview starts at about 9.30 minutes in, although the whole program is interesting!

For me personally, there is a lot to take in from this interview, the exhibition, the reactions to it all. It does take time to make it mine - to find ways in which I can tell me story in a way that it does not negatively influence my health, by going over my energy limits. 

This BLOG is for now the best communication tool I can use, and over time, maybe I can do more talks, like to ones I did this year at The Sanctaury, at UCC, radio, at exhibitions and book launches... All in good time! If you like to get notifications of my posts, please sign up for "Follow by email" 

Again, Thank YOU, my readers for coming along on my journey of discovery.

Show during Trump protest,
with original quote by Angela Y. Davis 
To finish of for today, I saw this quote recently: “I am no longer accepting the things I cannot change. I am changing the things I cannot accept…” - Angela Y. Davis

A good goal to have!

Links for further reading

Grace O'Sullivan's talk, which is included in this post 
Hatched (with poetry and images) now available as e-book 
Talk at the Sanctuary 
My book SHOP
Tramore Community Radio 'World In View'
Bernadette Phillips website

Apparently I 'rock', now that made me smile!
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