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Sunday, December 2, 2012

Roller coaster weeks


Where to start...
In my last post about college I wrote how proud I was for having finished my first module in Disability Studies, but also about the challenging experienced in terms of my health.
That same day I visited my GP and had to acknowledge that the course and all that came with it was too much. I felt ill. Exhausted. Full of adrenalin which had kept me going for all those weeks. Still proud and not yet ready to give up, but changes needed to be made.
In fairness the GP was on my side, and together we looked at how I could continue with my course. We looked at medication, and of course pacing.

I did make it to college that week, but only because I had a direct lift to Cork, and did not have to deal with taxi-bus-taxi or another bus... During the lecture, a fellow student asked a few times if I was ok. I slowly shook my head and kept on taking notes, suggesting "don't ask because I am going to cry..." 
All I wanted was to be in bed.
Drawing of me resting © Spark Deeley '09 
And that is what I did for the following weeks. 
A rollercoaster few weeks as I not only did I search for a way how I could still be part of the study but also had to yet again come to terms with the reality that M.E. is the biggest dictator when it comes to my life.
I can have plans but nothing can be achieved without major compromises being made along the way. A sobering thought.

My initial plans for college were to drive myself to the bus, travel to Cork and have a room there. I would stay the night and on the day after the course have the option to go to the campus, or meet with friends. I see now that was rather unrealistic, but I truly thought this was within my scope, as I felt that I was taking the journey in stages and had plenty of times in between to rest/recover. Enthusiasm is a great thing! Maybe the tantalizing notion of independence blurred all reality.

As I have rarely been able to drive during the past few years, I have now come to accept that driving is not within my scope anymore. I am about to sell my car. A car is in a way a symbol of independence, but it has now become more of a liability.

So. Travel to Cork was organised with the support of taxis, kindly sponsored by various organisations.
A little less independence than I craved for, but reality.
Now even that is not reality anymore. I can not cope with this exhausting weekly journey, and be able to sit in class for the evening, and study/read for my course and do the assignments.

Stretched out on the couch, I came up with all sorts of ideas to somehow continue with the course. What eventually came out of it is that all the resources for the travel, and my rent in Cork, was enough to have a direct lift and back to the college on college night. A willing driver, support from college, and funding bodies made this possible. I am soooo grateful. And yet... it hurts a little that I have to give up more of my independence in a way. This might sound ungrateful, but there is very little chance to fulfill my own plans on my own terms.

Last Thursday was the first time I had this direct lift. I was much better. It was lovely to be welcomed back in the class and to reacquaint myself with fellow students and the course material.

What is bothering me though is how I must look like a big "pain in the neck" with all my needs. Living with M.E. is a challenge as it effects every aspect of my being; mobility, brain energy, cognitive issues, stamina. I might seem ok for a few hours, but the fact that it takes days to recover from any activity is not seen by others. Nothing can be taken form granted. It would probably be easier on me and others around me, if I didn't have desires, wishes, plans... But then, if I didn't have this enthusiasm for life and see what I can do with my limited resources of energy and mobility, I possibly would have still be housebound/bed bound. (This has been suggested to me by friends and (complimentary) health practitioners.) 

Throughout the lifetime of this illness, over 14 years, I have set goals, and now see that I always had to negotiate with the illness and myself how I could achieve this goal. It might be in terms of creating art, on having to look at and experiment with different materials and tools which would make it possible for me to create. It might have been in terms of getting outside the door on my own, and after research settled for the use of a rolator and a mobility scooter. 
Usually these challenges are my private concerns.
This time however to achieve the goal of going to college, it meant that I had to accept the help/support in much greater detail from others. Others who don't know me, and are not aware of my life with M.E. to date. Yes, I have needs and I find it a huge mental challenge to acknowledge them, although this might not look like this to others. 
In order for me to continue the course I so enjoy and is so right for me, I have to speak up. I don't want to be that "pain in the neck with huge needs", but glad I did speak up, and ever so grateful for being listened to and having been given another chance to stay in college.

So now, I will follow Robert (Cat)'s advice to rest some more...

As ever, I am thanking you all for your support you have given me. Best wishes to you all.


Wednesday, November 21, 2012

Exhibition at Old Market House Art Centre

College? I'll tell you some other day when I am ready to tell you...

For now, I would like to share with you the work I have in a group show at the
Old Market House Art Centre, in Dungarvan Co. Waterford. 
It is a show for Christmas with arts and crafts.
If you would like to buy any of the pieces shown here, 
please be so kind to contact the Art Centre directly: contact 
Thank you

Conepuppets €59.50 each. To see a conepuppet in action, click here


"Windows" (10x10x3cm) €29.95 each

"Tin-People" 
Hot Paprika €29.95
Illy Espresso €44.95
Baking Powder €29.95

"Really?" €75

My books are also available, see here with 25% reduction on Hatched and Cirrus Chronicles.

In late February and for the month of March, I will have a show at the Art Centre with my latest work, some which have been featured here on the blog. I share the exhibition with Textile Artist Pascale De Coninck. More about that later.

best wishes to you.

Tuesday, November 6, 2012

Proud

Morning to you my dear friends,

... to start with the positive, I am immensely proud that I finished my first ever module in college. "Models of Disability"  I managed to attend all the classes, (5 night over 5 weeks, and a Saturday afternoon), wrote a literature review (800 words), an essay (1500 words), and a short, very short, statement of learning.
I have done it!

Was it easy?
No.
My GP is supporting me in my effort to study, but asks me every time, to 'stay realisic'. I am not so sure I am, or at least not all the time. The past few weeks I cried in the bus (quietly to myself) but, every time I get to Cork I feel better. Excited to be in Cork.
It is of great value to have a room there, as after a bite to eat I can sleep and rest for the afternoon. After the class, it is great to know that my bed is very close by! I can sleep long in the mornings before making my way back to 'the hills' again.

One of the nights, I was worried anyone would ask me, as one does, 'how are you?, and that my response would be accompanied by tears. It didn't happen that way, thank goodness.
My class mates and tutors are great. I do not feel the 'odd one out' when I lie down (in the hall, on a huge comfy couch) or when I walk around on my socks (shoes to sore to have on my feet). Nobody blinks an eyelid. Thank you my fellow students! It is great to be part of this group of interesting people!

I soooooo love the subject I am studying. It has opened my mind to the experience of disability throughout history and the more current role of Disability Arts. It also makes an impact on my own disability and the challenges I am encountering, especially now I am more out and about in society. So much in my head!
Which of course is partly responsible for the drain on my precious energy. You can decide to not walk, but it is hard to stop thinking.
I do compensate by meditation, relaxation, concentrating on my breathing and rely on the trusted sleeping and resting.
I did have a few 'scares' of relapses, but somehow managed to stay on top of it all. Proud of that too, but aware I might be walking a very delicate line...

Still, I am very much looking forward to the next module: Body Politics and the media: To examine stereotypical images of disability in the media and the influence of these images on society’s attitudes towards disabled people.  A subject close to my heart it seems, as every time I read something about this, and the arts, it gets my full attention.

I will keep going and rest when I can! If I do have to give up, what I have learned so far, and the interest it has created in my mind, will be of benefit. My reflexologist suggested the other day: "I feel another piece of writing coming on..." She might be right!

Whenever I know it is ok to share my written work with you, I will post it on this blog.

Now, I will sign off and again thank you for your support.

Love to you all.




ps... As always it is lovely to know that you stopped by to read my musing and follow my creative adventures. It would make my day if you leave a comment.
Many thanks & Lots of love Corina

Tuesday, October 23, 2012

Disability Studies and all that comes with it!

Well, I've done it!
I've made it to college and so far, live to tell the tale!
Proud. Excited. Exhausted. Scared. Challenged. So Excited (again and again). On a new road. On a continued road. Confused. Clarity of thought.... you get my drift.

I have been in college now for three weeks. One night a week, and a few days ago I felt for the first time "I Can Do This!" A happy thought.

The first few weeks, I encountered many issues regarding travel, unhelpful bus drivers (not wanting to take my mobility scooter on board), being left off at the wrong stop, trying to get a lift home. All these challenges are now slowly being teased out, which will all help to make the experience a much more manageable one.
I travel on a Thursday morning by taxi (sponsored) to the nearest bus stop (half hour away) and take the bus to Cork city. I've learned that taking a taxi to my "home from home" is the least energy taking-least challenging way to go. In my 'home from home' I make lunch and sleep for the afternoon.
The university has arranged a taxi for me to get to my course (and back). I appreciate this a great deal!!!

Then the REAL work starts!
First an hour of tuition, you know, well, I know now... :-) all these things you need to know on how to use the library, how to write essays, how to put in references etc... And then the REAL REAL course starts. Disability Studies! My brain is rather 'fried' at this stage but so far I managed to stay reasonably with it, with the help of painkillers and the occasional lying down on a couch during group sessions.
(I must say I am proud of myself to have given in to the need to be horizontal, in stead of fighting it, which would have had an adverse affect for days, maybe weeks. It isn't easy to be the 'odd one out' but so pleased I listened to my body.)

"Dipping Toes" © Corina Duyn '12
The course looks at all things disabled, to put it in a nutshell. There was soooooo much information 'thrown' at us that for weeks my head felt like a huge whirlpool of thoughts, images, reflections, notions, learning about my own personal experience. Thoughts about the 'social model' (ie that society makes me disabled) to the medical model (we need to be fixed, cured, rehabilitated...) What IS disability; to how people look at the disabled; me included, is it steeped in fear, fixable by education?; what about historical and cultural issues, anthropology; my art; my writing; how to take notes; how is disablity portrayed in the media, in art; how my work has been used by others in their academic studies; how I suddenly realised that even the correspondence course I did years ago in 'Understanding Western Art' now makes sense too. Soooo much to think about!
All so exciting!

Also the fact that there is a great mix of people on the course, range in ages, nationalites, expriences and backgrouds.

I have settled down a bit and have been able to switch of my brain some bit.
Thank goodness for mindfulness and creativity! And for jobs like folding laundry or dusting the mantelpiece!

Even the reading about, and praticing mindfulness makes more sense now, since I started the course. My life's journey makes more sense...
Although I probably do not make sense in the above rambles!
Trust me, in time to come it will all make perfect sense to me, and when that time comes, I will enlighted you too.

Thanks to all of you who have wished me well and have helped in some way to get me on the road to fulfilling a long held dream of studying at University, but also help me see how I have been on the right road for a long time.

Love to you all.



ps... As always it is lovely to know that you stopped by to read my musing and follow my creative adventures. It would make my day if you leave a comment... preferably here, on the blog...? Many thanks & Lots of love Corina

Friday, September 14, 2012

Really going to college

Following on from going to college:
After an amazingly turbulent week stuck in the whirlwinds of society and bureaucracy I learned that the funding I had hoped to secure (which seemed to be a absolute yes, months ago) was denied. I am still at a loss to fully understand why. The Department of Social Protection (DSP) (Social Welfare ) had requested clarification on the course level and the awarding body. What eventually came out was that the fact that the course was HETAC and not FETAC (H= Higher, F=Further Education) the DSP was not in a position to pay the grant. But as the same time, in other parts of the country the same DSP had contacted the college to advise prospective students that there was funding available under the very scheme I had applied under.
Confused yet?
I am...!

On Tuesday I decided that there was no way I would be able to fund college, travel and accommodation from my disability Allowance alone. The total expenditure would have been a quarter of my total income. I cancelled my application, with great sadness to be honest.

However I wasn't going to stop studying the subject of the course: Disability Studies, I would just do it on my own, or see how I could get a group together to study in our own time, in our own way.
I felt at piece with this, and found solace in my studio and in my creative ability.

But...
The day after making the decision to cancel and was moving on, I received an offer of total funding for the college fee... I had to think about it for a few hours, but in the end gratefully accepted the offer from this donor. I am not sure yet if I can reveal the source, but I am incredibly grateful for the lifeline handed to me.

When I asked the course coordinator to put me back on the list, she said that she had never taken me off it as she felt that funding would come through from some source or another and if it didn't that it was because I didn't want to do the course.
Now that is faith for you.

link to the full story: going to college

Also met with the O.T. this week. More about this in time to come.

ps... As always it is lovely to know that you stopped by to read my musing 
or follow my creative adventures. 
It would make my day if you leave a comment..
Many thanks & Lots of love Corina

Tuesday, September 11, 2012

Dipping Toes...

During the past few months while exploring the possibilities of going to college- (see previous post) to study Disability Studies, it felt like I was dipping my toes into the water... testing the waters in a way. How right I was.
Anyway this is the sculpture "Dipping Toes" which I worked on during this time.
Since last week, when reality struck, I started working on two sculpture to reflect on my ride on the wave of enthusiasm and later being stuck in societies web...
So glad I have my creativity to make sense of mental challenges and dreams.

"Dipping Toes" (33x26x29cm) © Corina Duyn
"Dipping Toes" (detail) © Corina Duyn

























ps... As always it is lovely to know that you stopped by to read my musing 
or follow my creative adventures. 
It would make my day if you leave a comment...
Many thanks & Lots of love Corina

Thursday, September 6, 2012

Going to College



Going to College
(Corina Duyn 5-9-’12)
Fourteen years ago I was in the process of applying to go to college to study Art Therapy. However, I became ill with the debilitating illness M.E./CFS and had to forgo on the idea. What I didn’t give up on was the wish to study.
A quick tour of the fourteen years that have passed since: The first few years were spend more or less housebound due to the severity of the illness and resulting disability. To be able to live at home, on my own, I eventually received support through the provision of home-help, seven days a week, twice a day. A life saviour, so were the friends that supported me and kept me informed of the life that went on behind the four walls of my house and garden.
Art and writing became another lifeline to help me deal with the limitations and changing lifestyle I was experiencing. I drew eggs, painted birds, wrote in my notebooks about a spider in my bedroom, which was as inactive as I was. Art and writing ‘informed’ me how I could make the most of what I had, to value the environment I was living in. I was able to have a life on paper. In a way I did my own Art Therapy study!
The wish to study continued though, and years later I settled for a correspondence course with the Open College of the Arts. This allowed me to study when I was able, even if this meant just one hour a week. I chose Understanding Western Art. It took me two years instead of the 7 months suggested to complete the course, but it was a proud day when I received my certificate. Studying gave me a purpose to my day. To my week. To my life.
Encouraged by local librarian and the Arts Officer, I translated my art and writing into my first book Hatched. Again a proud moment in my life lived with illness.
Writing became more and more important in my life, as much a tool to help me make sense to my life, as it was a way to use my creative mind. It was an activity I could do with the limited energy I had. All I needed was a pen and paper. I could write lying down needs be. These thoughts resulted into undertaking another course: Starting to Write. I loved it. Again the course took me longer than average. I did it and received very good marks for my efforts. One of my stories won runner up prize at the IWA Writing competition in 2010.
But.
Correspondence courses are solitary activities. I longed to be part of a group to fill the need for social contact. To be part of society. A big aspect of living with M.E. is, in my personal case, that I am very limited in my energy and mobility. This impacts hugely on how much I can do outside of my home.
Going to college stayed a wish. A big wish.

For about a decade I had requested if it would be possible to partake in one class as part of the VEC Art and Design course. For me this would mean a daytime course, in which I could learn about art hands on, be taught, be part of a group and learn together. It would get me out of the house at least once a week, and not just for hospital appointments… It wasn’t to be. You had to either become a full-time student, or not at all. After a while I gave up asking, because every summer I got upset of hearing of people going back to school. Studying. Every September I felt left out. I know that this is a very subjective observation, because of course not everyone is going to college…

In 2011 however, I attended an information day here in town about education and health. I talked with representatives of the VEC, and with guidance councilors and stated my case again: the wish to attend one class.
A few months later I had an interview with the VEC. I was pleased to see that the building had been adapted for wheelchair use. There was a ramp and an elevator to the second floor. The course coordinator and a guidance councilor were present at this interview. I felt understood and was told I was not the only person with this request. ‘Good’, I thought. I felt elated to be listened to and understood. A few weeks later I received a letter from the guidance councilor that the course coordinator had confirmed a place for me. I would start a weaving class, the starting date would be confirmed later. Thrilled! I was going to college! That is was only part time- every second week for one afternoon did not dampen this excitement. Not at all.

But…
I heard from a teacher friend that the courses about were about to start and she looked forward to seeing me in college. I hadn’t heard anything from the college since that letter of confirmation. When I rang, I was told that more full-time students had signed up for the course and there was now no room to accommodate me.
I felt gutted.
Pushed aside.

My teacher friend spoke with the weaving teacher what had happened. She had no problem adding me to the class. In the end I was given a chance to fulfill my dream to study- but it was made clear to me by the coordinator that I was there as a ‘favour’ as an  ‘extra’. This hurts, to be honest, but I didn’t let it stop me from attending class.
I loved the course. I loved going to college, being with other creative minds, learning a new skill, and finding that I absolutely loved weaving. I received very high marks for my work and portfolio. At the end of the school year I asked the coordinator if there would be a place for me to continue the course for the second year. ‘We’ll see. I am not sure.’

No contact was made by the VEC to say when this years course was to start again, and if I did or did not have a place to continue the course. An oversight perhaps?

One point that stayed on my mind in all this was, why make a building accessible for disabled people, but not the courses.

Having attended this college for one year, every second week for one afternoon, when able, made me much more confidence that I can go to college and study.

During the summer I kept coming across a Continuing Adult Education course in UCC: Disability Studies. It caught my eye. It caught my imagination. Here is a course, which might just help me to use my writing in a more focused way. I know a thing or two about living with a disability. I have experienced first hand how society views a person with impairment. My own personal experiences and those from the time I worked as a palliative care nurse and social care worker with people with learning difficulties.
A long telephone conversation with the course coordinator from UCC fueled my enthusiasm for this field of study. I could do this. Couldn’t I?
I place was reserved for me to give me time to sort out the financial and practical issues surrounding this (big) decision.

Finance: I learned that there is only financial assistance available if one attends a full time course.
It is unlikely I will ever be well enough to study full time. So, I had to be creative in finding ways to fund this new direction. I contacted various agencies and disability support groups, and researched student finance in great detail. I believe that this course could help me to play an active role in society, within the restriction of my illness/impairment, and possibly give me some form of income in the future, maybe from writing articles. Yet, like the correspondence course I have to finance this route myself. Society/ Government has not looked outside the box to aid all people who would like to make a contribution to society on their path. This is not a recession related issue. No facilities for people with a disability only able to attend part-time college were made during the so-called Boom-Years.
I was delighted to receive likely support towards fees from FAS, however this was put in doubt yesterday. There is only funding available via this route up to FETAC Level 6, According the Department of Social Protection, this was not clear on the application made my FAS on my behalf. Requests for clarifications were made to the college by FAS but so far no clarity have been given. I hope these issues will be resolved with a positive outcome. Without this funding, about half of the course fee for one year, it is very unlikely I will be able to afford this study. If I do receive this funding, than it is only for this first course year. How I will finance studying next year? No idea.

Of course it is not just the college fees that I have to find to finance this study.
I need physically to get to college. I am unable to drive there. Although I qualify for Free Travel, there is no public transport from my town. I need to ask a driver to bring me to Cork, or to a bus stop half hour away from here. Or hire a taxi to and from the bus stop.
To be able for me to attend the night class, I need to stay in Cork for the day and night. I would have to rest before the class commences and travel back home the following day.

The UCC Disability Support Officer I met last month was very helpful in supporting my wish to study. Transport would be organized to collect me, and bring me back, to my room I will be renting for the duration of the college year. Also I will receive help with practical issues in college, like the use of the library. This is so heartwarming. I felt supported. To be able to receive this support, I need a letter from my consultant to state my disability/illness. I requested this on the same day of the meeting. No letter has been forwarded as yet.
No letter. No support.
On a practical note: I use a mobility scooter to travel any distance greater that a few minutes walk. Over the years I have bought my own scooters as the health board wouldn’t fund one. Their reasoning is that I am ambulant. I can walk. Years ago I was told by the Occupational Therapist (O.T.) ‘it might make me lazy to use a motorized aid…’ This was the general view of the HSE, he told me. That my freedom to move around ends at the end of the street, did not seem to make any difference. Without the scooter, I will not be able to partake in society, to do my own shopping, to go to town and meet friends. (The Mission statement from HSE regarding disability: 6. To help people with disabilities to achieve their full potential including living as independently as possible.). Another section of the HSE is of the understanding that I am not able to walk, as they awarded me so-called Primary Medical Cert, a cert very difficult to obtain, as the criteria are very strict indeed. So one HSE department suggests I can walk, the other does not. I have been given manual wheelchairs over the years, but am unable to propel the wheels for anytime longer than a few minutes. I need someone to push my chair, which again limits my independence.
My scooter needs maintenance or replacement. The use of a working scooter plays major part in me being able to attend college in UCC.
In April of this year a request was made by the Public Health Nurse to the O.T. for me to be assessed again. She made a new request in July stating the wish to attend college and need for a motorized mobility aid. I have not yet received this assessment. It is now September. College is about to start in 3 weeks.
The O.T. did ring yesterday, on request of the Public Health Nurse. ‘We can not do maintenance on your scooter, because you bought it yourself….’ I stated my case again and was told that my file will be looked at in 2 to three months… [1]

I am fully aware that my case is not unique, that there are people with a disability/ illness that have much bigger issues to overcome, like the current decision by the Government/HSE to cut Personal Assistant hours for the Disabled. (Have they any idea?). I am so proud of the people affected who protested at Government Buildings overnight and had this decision reversed.

My story is only a fraction of what is happening- or is not happening- in the world of people with a disability. I believe I can use my voice to add to the debate. I believe that this course in Disability Studies, will aid me to be part of society again. It will fulfill my fourteen year-long dream to go to college. My life has changed utterly since that time, but I have come to terms with the fact that I more than likely will have M.E. affecting my life in a very profound way for the rest of my life. I have never given up on life. I have created a good life within the restrictions put upon me. A life of creativity which will always be part of me. Right now though, I am at a crossroads, a major one. Can society: the O.T. (scooter), Consultant (letter to gain support in college), Social Welfare/Government (finance), help me to take this new path?

I am not trying to argue that just because I have and illness/disability that all my needs need to be met, that all study should be fully funded. What I am trying to argue is that society could at least meet me half way, and not put up any further unnecessary road blocks.


[1] * I rang to O.T. to suggest that maybe I can meet him at the hospital instead of waiting for a further few months for a home visit. This proved to be no problem at all. Why was this not suggested by the O.T.?



Monday, August 27, 2012

Conepuppet in Best Gallery/Design Shop in Ireland

On the very day this latest Conepuppet was 'born' it made it straight into the Best Gallery/Design Shop in Ireland (according the Irish Times readers) See : Ardmore Pottery.


Sunday, August 5, 2012

Fairy Life

Some latest commisioned Artist Dolls. It feels great to make this little beings, and to finally have the energy to fullfill orders dating back a good few months.
Thank you, new owners of these little people, for your interest in my work. 
X
"Aibhlinn" © Corina Duyn
"Aibhlinn" © Corina Duyn
Aibhlinn is now living in Vancouver, Canada

Akari  © Corina Duyn
Akari  © Corina Duyn
Akari, is the older sister of Cloud Fairy Cirrus Kalani, who has his own book. Their younger brother Tarik lives in Midleton, Co. Cork. Akari is joining him in the next few days.

ps... As always it is lovely to know that you stopped by to read my musing and follow my creative adventures. It would make my day if you leave a comment... preferably here, on the blog...? Many thanks & Lots of love Corina

Tuesday, July 31, 2012

Sleeping ...



Poplar Hawk Moth(s) © C.Duyn
I spotted what looked like an unusual leaf at the bottom of a branch of my Contorted Willow Tree in the garden.
It turned out to be a Poplar Hawk Moth.
Well two actually.
Mating.
But they sleep during the day.
So are they sleeping 'on the job' so to speak?
Poplar Hawk Moth(s) © C.Duyn

Friday, July 27, 2012

Serenity

My latest work. Serenity.
Took me a few months to make, but it's done... 
The pod is inspired by the Leek Pods  
This work will probably be exhibited in spring, 
if you are interested in this piece, please get in touch.


By the way, do you know about MEme's travels?

Sunday, July 22, 2012

Weaving- first year completed

"Gaia" Weaving © Corina Duyn '12
It doesn't feel that long ago that I started my weaving class. That my dream of going to college became a reality.
Well the first year (FETAC Level 4) has been completed. A few months ago...
This was my last project and overall I received 94% for my portfolio.
Am rather pleased.... and proud....

(PS the tapestry is 18 x 20 cm)

Friday, July 6, 2012

Disability Studies

Presently I am looking into the possibilities/practicalities of enrolling in a course in College: Disability Studies. I had the most exciting, wonderful, encouraging talk with the course coordinator yesterday. 
I think/I know I would like this course, I know I'll be good at it, have lots to learn, have lots to give.
For the next while I will have to look at if I can do it, energy wise, getting to the actual college, and financially.
Talking to the coordinator I remembered this story I wrote a few years ago. It was published in two local papers: The Dungarvan Leader, The Dungarvan Observer, and on the Letters Page of the National paper, The Irish Examiner (under the title "Disability is no laughing matter").
From this publication, I received a letter from a boys class in a secondary school in Middleton, who wrote me a letter of support. They all signed it. It warmed my heart and thought, here are 30 teenagers, who  now potentially view people with a disability with more compassion and understanding.


Those Disabled Look Funny, Don’t They?

Living with a disability can be a challenge in itself, but sometimes society makes it even harder. Let me give you an example: I was driving down the road, and not one, but two people stared at me, and laughed. Not the ‘how are you doing’ kind of laugh, but more the ‘look at her’ kind. I asked my companion if my hat was back to front, or was there is something stuck on my face? It appears that there was nothing out of the ordinary, other than that I was seated on a mobility scooter. So, what made those people laugh at me?
Why do we stare at anybody who, in some way, looks different? Let me rephrase that. Why do adults, stare at people who fall outside of, what they consider, the norm? Children don’t stare, they just ask.
During one of my first outings in a wheelchair, a young man of about five, walked up to me and asked: “why are you in a wheelchair?” When I desperately tried to come up with an answer, he handed me a lifeline: “Are you tired of walking?” It is as good an explanation as any. Thank you, my little man. I wish adults would do the same. Ask! I don’t bite and can talk (for myself).
Years after that enlightening encounter, I was wheeled into a shopping centre in, which was celebrating it’s second birthday. A ‘pirate’ ran up to me and was about to give me a kiss and a handful of sweets. I pushed him, with all my strength, out of my face. Repeating my verbal response would not be appropriate here.
A few weeks later, my ‘mobilisor’ (wheelchair pusher) was asked: “what’s wrong with the little one?” I reckon that the questioning man, and myself, were close in age: both in our forties. I decided to tell him myself: “I am tired of walking…”
For a while I thought that the onlooker assumed that the person seated in a wheelchair never progressed beyond the age of a toddler. The toddler might be allowed to hand over money to the cashier, but, without fail, the change would be handed over to the ‘mobilisor’. Why?
Life progressed, so did my form of transport. I bought a mobility scooter. Looks did not stop. They just changed. On one of my first outings on the scooter, I had a little difficulty finding a place where I could mount the sidewalk. A young adult seated in a parked car followed my every move, before she was overcome by convulsions of laughter. I wanted to tell her that driving a mobility scooter wasn’t what I would choose either, but it is much better than being housebound and completely isolated from the outside world.
I hope she will read this.


If you have an interest in this story, you might like these ones:
Winning an Equality Tribunal Case Adventures of refusal of airline to take me on board. (Article published in IWA Spokeout Magazine '12)
When living with a disability Ireland is a different country (article published in online newspaper Journal.ie


Sunday, June 24, 2012

Going with the flow

Brudair © Corina Duyn '12
So much has happened...
First of all, a few months ago I turned 50, and it seems to be an onslaught on my health. Kind of funny, not haha funny, but don't 'they' say, "going over the hill"? Well it feels as if I climbed the hill and tumbled down with great speed into the ravine at the bottom.
Well, I am slowly crawling out of it.
Wiser?

One of my dreams was to make the long desired trip to Canada. I really thought I could do it, but as my energy is so incredibly precious at the moment, I had to acknowledge that I can't do it this year. I think the "I can, I can't" thoughts were taking energy as well.
On the same day that I really was ok with the not going, the "universe" or actually the arts officer, showed me again where my energy should go. And I know this, but I, just like anyone else, have dreams.... But I know that my energy should go into my creativity. "The only constant" as a friend pointed out.
The arts officer, offered me to submit my work for a group show before Christmas, and more excitedly, to have my own show, with an artist of my choosing.
solo fish © Corina Duyn
I glowed, for the rest of the week!
Still am! My work will be sharing the gallery space with Pascale de Coninck's weaving. I am so excited.

That week I also had to complete a commission, a Fairy Doll like Cirrus  The main character in the Cirrus Chronicles. I searched for months for a wooden animal puppet. I searched in vain.
Lying on the couch, after the exhibition news, I thought about the person where the commission was ordered for. One of the main thoughts were the need for a new sense of direction; living by the sea; interest in sewing. Slowly a fish sculpture came into my head. Over the next while the idea became a reality. A fabric fish. I would make a fabric fish!

Brudair © Corina Duyn '12
Over the coming days I played with fabric, rope, string, stuffing and came up with a way to place the fish on a stand.
Fun!
I had so much fun!
And... this sculpture showed me Trust. Brudair (Irish name meaning Dream) sits so comfortably on the fish, he is not even holding on to the fin. He seems to Trust that wherever he is being led, it is fine.
The piece of driftwood, has a curve and it shows me Movement.
I was shown to go with the flow.

I was glad to be able to spend a few days in the company of Brudair and his Fish, before it was picked up to be given to its new owner.

Of course Robert needed to be in the picture!
Both seem at ease! Although not in agreement
which way to go!






Before I forget!!!
To celebrate the New Look Website (heading), please click here for a summer book offer 

Monday, June 4, 2012

Birthdays...

Yesterday was my mother's birthday. She would have turned 91. Today is my dad's. His age would have been 94.
My dad on the left, I think this picture was taking during the war
I love this picture!
The folowing is a story I wrote about my mother after her passing in 2007. 
I like to share it with you today in their memory.
Maybe one day I will get to write the story of my dad, but have to dig deep as I was only 14 when he passed away. A long time ago.


Edvard Munch meets Louis Armstrong  
By Corina Duyn


“My little girl. My little girl,” repeats my eighty-five year old mother again and again. She strokes my face with her cold thin fingers. “My little girl…”
As she soaks up my image with big eyes deeply sunken in her ashen face, I wonder what is she taking in. My brown eyes? Contentment? That I am still using a wheelchair? Thoughts about our past? Or what my future will bring?
   “…And you were allowed to come straight away?”
I look at my brother seated on the other side of her Dutch hospital bed.
    “Ma expressed a wish earlier today, that I should call everybody,” he explains.
    “Yes Ma, when we told the nurses that I just arrived from Ireland, they allowed me to come and see you straight away. I am so glad to be here!”
 She squirms away in pain when I touch her arm. The unruly nightdress exposes a deep diamond-shaped hollow above her chest bone. A failed drip has left a large bruise, already purple in color, on her poppy-flower skin. The gurgling sound of her chest is in tandem with the bleating sounds emanating from a fellow patient.
“My little girl was allowed to come straight away. I need to pee,” my mother bursts out when she sees a nurse. While we wait in the hall, my brother tells me how our mothers changed vocabulary reminds him of her father.
“Since her stroke she sometimes tells people to ‘bugger off’. I am proud of her,” my brother says with a smile. We reminisce about our granddad’s deviancy, recalling stories of how he once put his walking stick in between the spokes of a young man’s bicycle. The young man had cycled through a pedestrian area.
“Ma?” I hold my mother’s hand. Nails as brittle as her mind.  “We think you behave a bit like granddad these days.” Deep crevices appear between her eyes, followed by a great smile, which momentarily lights up her face.
“Happy memories?” the nurse asks. A very definite ‘Yes’ follows. It is hard to believe that the strong squeeze of my hand comes from this featherweight body.
As the nurses settle her for the night, we are on the brink of a New Year, a new era.

I sit down on my mother’s cream couch. An orange-checkered blanket and blue patchwork cushions are waiting for midday snoozes. I imagine her perching here, wearing grey trousers and green shirt. Staring out the window, eyes wide open, right leg athletically folded over the left, knee high up in the air, heel flat on the couch, left hand tightly covering her open mouth.
The brown plastic window box, once home to a pair of brooding collar doves, is bare and lifeless. The straggly branches of a chestnut tree in its winter outfit partially blocks the view of a block of flats across the road. I can see my mother raising her finger at the black and white photograph of her husband, who passed away thirty years ago. She’d scream: ‘You! Why did you leave me here alone!’
The sky lights up with customary New Year’s Eve fireworks.

A daily routine sets in, with twice-daily visits to the hospital. My mother’s two remaining brothers, in-laws, nieces and nephews, grandchildren and friends, old and young, also come to visit. She wants us to leave almost as soon as we have our coats off.
The day she has five of her six children around her, we are granted a little more of her time.
“Go away to drink coffee!” she tells us after twenty minutes. She turns on her side, seemingly examining the tree outside the window. Hands busy folding a napkin into a perfect triangle.

These hands, blue veins in a pattern not unlike her embroidery, were never idle. As a young girl, she learned how to sew. Taking pride in finding a bargain, she still made some of her own clothes at the age of eighty. Fabric carefully selected from the weekly local market.
Every available storage space in her flat is spilling over with art and craft materials: tools for card making; pencils, paints and brushes; colouring books with Celtic designs; ribbon, beads and yarn; patterns for endearing rabbits and funny teddy bears. It is not all hidden away. Her home is a gallery of her creative, family, and traveling life. Every inch of wall tells a story, even the bathroom wall, with its jigsaw-collage created by her offspring.
A photograph of my mother’s first encounter with her great-grandchild in his incubator, hangs beside a rather official portrait of a granddaughter and boyfriend. A calendar, crammed with birthdays and wedding dates of family and friends, includes the dates when five of her six children emigrated. The family snapshot, taken during her 85th birthday celebration, hangs above the table. Looking at us, she’d doodle on her yellow vinyl placemat.  I wonder if we will ever meet as a family again. She might have had the same thought.
Above the television, a few etchings of her town hang beside a powerful portrait of an old sailor, drawn by my father. On the dark oak chest of drawers rests an ancient copper letter-opener. It holds a prominent place among recent correspondence from around the world. Her patchwork of flowers and leaves, share the wall space with a print of Edvard Munch’s painting The Scream. Angry with us for leaving Holland, she’d look at this powerful image and throw pillows around her bedroom.

Student nurse Jessie gives her patient a spoonful of custard. My mother opens her mouth and swallows the yellow substance with ease. At the sight of another spoonful, a look of utter repulsion comes over my mothers face. It kind of makes us laugh.
“Nha nha…” Ma waves her hand frantically, and pushes away the nurse’s hand. There is a look of understanding between the two of them. My mother seems to say: ‘You understand that I want to die.’ The nurse doesn’t persevere. This young nurse becomes the link of communication between my mother and us.

My mother’s home becomes the family headquarters. We eat Chinese take-away, a family tradition for family gatherings, and toast a life well lived. We hear our mother say: ‘Sure I want another drink, you can’t walk on one leg!’ The story that makes the headlines for the grandchildren is about when their seventy-eight year old grandmother was challenged by her three girlfriends of similar age to go into the sex shop and ask for a dildo. To the delight of her companions, she went in and asked all there was to know from a rather surprised shop owner.

My mother looks old, worn out, and yet strong in her fragile body.
She puts her fingers in her mouth and takes out some phlegm. She smears it on the white starchy sheet. I clean her hand. Our roles have been reversed. As the slippery deposit contains blood, a sample needs to be sent to the laboratories.
“Mrs. D., could you please cough up some phlegm?” nurse Jessie asks. A look of puzzlement appears on my mother’s face. In the hope that a drink would increase the chances of a sample, Jessie holds a straw up to my mother’s mouth. She closes her eyes and opens her mouth wide, like a nestling.


Bit by bit, I page through the varied ways my mother documented her life. There are a large number of photo albums, some already divided up for us, in the event of her departure. Scrapbooks with concert programs; and a ‘funny stories-scrapbook’ with newspaper clippings, with headlines like: African eats his father, mother, and three children; and Out of protest a family do their laundry in a church. In her diaries I read about my own life and the lives of my siblings. Details long forgotten.
This treasure-trove of memories, written and illustrated by my mother, gives me a unique insight into her life as a child growing up in poverty, as well as stories about her parents and life during the war years. Being in my mother’s house, among her personal and intimate belongings, brings me closer to her than we ever actually were. I finally acknowledge the inevitable link with my own creativity and desire to write and illustrate, and become fully aware that our best communication was through our creativity. 

As the voices of her visitors fly above her silent body, Ma suddenly bursts out: “Godsamme truttebollen!” We all laugh.
“I say that as well,” says my sister. “I learned it from Ma,” who in turn manages to let us know that she had learned it from her mother. I wonder what thought ran through her frazzled mind before this very gentle swearing saw the light of day? Was she trying to tell us something but could not find the words? Is she annoyed with us for being here? Was she suddenly aware of herself, so ill and small in a hospital bed?
I think all my mother wants is peace. Peace she is not experiencing when her busy visitors are around. 


 “Come here, I want to tell you something.” My mother beckons nurse Jessie to come close, as if she had a secret to share.
“It is time to go. I know what I want…”
“Oh?” Jessie looks a little overwhelmed by this conversation.
 “A white coffin, with blue flowers.”

Back in my mother’s house, we page through her many travelogues. We find a list of all the journeys she made to her offspring in Canada, Ireland, America and Chile. The count comes to thirty-five. She has been ready to go on her last journey for much longer than we were aware. In 1979 she had written a list of music she would like to have played at her funeral: Inis und Osiris, performed by the choir our dad was a member of. Adagio Sostenuto by Vladimir Horowitz and to finish, a song by Louis Armstrong.
Her wish to die does not come easily. Her body, in all its weightlessness, is strong. Unable to understand what she is trying to tell me, I stroke her ever-busy hands. I am grateful that I finally have the opportunity to be with my mother alone, without the company of a busy sibling. Before departing, Ma pulls my head close, and I am granted a long intense kiss on the cheek.

Ma leaves for her last flight while a violent storm rages over the country.

We all draw blue and green flowers on her white coffin.

At the crematorium, my only brother still living in Holland places a small glass of Ma’s favourite brandy on her coffin. My two eldest siblings dance to Louis Armstrong’s Hello Dolly, beside her.

© Corina Duyn 2008

ps... As always it is lovely to know that you stopped by to read my musing and follow my creative adventures. It would make my day if you leave a comment... 
preferably here, on the blog...? (instead of facebook...?)
 Many thanks & Lots of love Corina