Tuesday, January 17, 2017

The fear of loosing everything you know

'Fear is like a fog; it spreads everywhere and falsifies the shape of everything.'

John O’Donohue - Anam Cara


page from Into the Light by artist and writer Corina Duyn, showing a tree covered in fog and a quote about fear
page from Into the Light 


There were many times where I experienced Fear while going through ME/CFS.

FEAR associated with deterioration

In the early years, there were so many strange symptoms appearing. Sometimes on a daily basis. Suddenly being unable to walk properly. To coordinate my movements. To sit up and talk at the same time. A sore throat but no fever.  Pain. Excruciating pain.... (to name but a few). 
Yet another symptom appears and you don't know if it is ME/CFS related, or something else, and should also be concerned about.
Throughout the first decade I ended up in hospital on many occasions.
Severe unexplained headaches, with suspected tumor on one occasion, stroke at an other, meningitis...? A bad dose of gastroenteritis - for others a 'one-day-bug' made me so ill that I became severely dehydrated, even though I drank water all day. I was brought (yet again) to hospital by ambulance. I lost kilos in days. As a result I could not recognize myself in the mirror. In hospital I was suspected to be anorexic. I was not. I was just very very ill. I love my food... 

Fear too by loosing of mobility... will I ever walk again? Can I have shower today, or will that make me more ill. Fear of never seeing improvements. Ever.
Fear of dying. Fear of death. Fear I would fall through my bed as my body felt so heavy. Fear of dependency.

These are just a few thoughts that came to mind. The real list is unfortunately much longer.

The not knowing what is happening

ME, (and I am sure many other illnesses too, but I can only write from the ME/CFS perspective) bring this huge amount of unexplained symptoms in our lives. The not knowing what is happening, who to turn to, who can help us, who will understand, all bring fear.

Feelings of loosing control over every - thing 

Having a body which stops conforming to all we knew can feel like a complete loss of control over our lives. Our brain play tricks. We loose the ability to read, to write, to understand a conversation. Loosing one's independence. Having no control over what is bought in the shops, what we eat, when our house is cleaned, when we see our friends. If we still see out friends...
The list can seem endless. Which medical person to turn to, where to get information. Will I be believed. Will I be told that it is all in my head ...
Having to deal with a ineffective health system and having to wait for years to get test done to rule out other diagnosis. The fear that this waiting brings is hard to cope with.
I had years of slowly progressing in the right direction, but only to get very ill again five years ago due to another viral infection, and most likely also because of the onset of memo pause. The fear with having to go through the illness yet again brought its own level of fear. I felt I was loosing control over my life, over everything, again.

I do not want to give up. Or give in 

Yet, I do not want to give in. I do not want to give up. I do not want to give the power over my  life to illness.
I learned to work with the illness, but not make it my life. We can live together. Make deals. Learn to negotiate. 
This is not something that comes easily. It took me years.
Also, once the negotiations are made, it does not mean that all is rosy. New symptoms will still come. Some ME/CFS related, others are not. I had my brush with cancer scares. And although thank goodness all turned out well, the surgery and the fear still made its impact known in my well being. Temporarily. 

But as the very wise John O'Donohue shares with us in Anam Cara: 

Fear is like a fog; it spreads everywhere and falsifies the shape of everything.


If we manage to look beyond the fear and truly look at our lives, at our circumstances, there is a possibility that the fog will lift and we can yet again see the beauty in our lives. With different eyes perhaps, but there  is still beauty to be found.

Be well my dear, brave friends.

Links:
  • The image is a page from Into the Light  available from my shop
  • Details of John O'Donohue's book see here


Monday, January 16, 2017

Still Life: Life with ME/CFS

Patent Pending: The Automatic Energizer


A visual Blog for today.
A page from Hatched (re-hatched)
But relevant today...
page from Hatched by Corina Duyn. Painting of arm hanging over the side of a couch, attached to an automatic energiser to regain energy lost because of ME. By Corina Duyn
A page from Hatched- a creative journey through ME.
By Corina Duyn 2006
Now available as download, here

The painting I made in 2002
on a piece of cardboard.
Depicting my wish to design an energizer,
like the battery charger 
I had for my mobility scooter.

The charger has a dial, 
to say how full, or empty
the battery is.
I wanted, and still want
a dial like that
in, or on, my body...

One can plug in
and re-charge...

Be well
and energized!




Sunday, January 15, 2017

The power of the written word


'Part of our identity and our abilities may be hidden away like treasures  
at the bottom of the sea until we are forced to find them.'

Tobi Zausner - When Walls Become Doorways as quoted in  Into the Light



This morning I woke up thinking about writing. How writing has come into my life because of illness. 
Friends have been telling me that I always wrote descriptive and funny letters - you know the kind that arrived in the post. Anyway, writing in my changed life, is like having found that hidden treasure, as quoted by Tobi Zausner in her book when Walls become Doorways. It was part of my identity, but it was hidden.

Writing started by following The Artist Way by Julia Cameron, back in 1997. However, in the early months of illness (1998) I was unable to write. When regaining that ability a year later, I wrote, and wrote, and wrote whenever I could. (Again using Julia Cameron as my guide).
And even when it seems impossible to write, I still wrote.

There were days when I was in so much pain and was stuck to the bed, unable to even sit up. But I would have my notepad and fountain pen (the only pen I can write with, because of its easy flow and no pressure needed to write), beside me and I let my pen move over the page and see what words would lead me ...  I write, whatever needed to come out of my head and hand. I couldn't even see what as I writing, but that did not seem to matter. 


I have quite a nice handwriting, but in times of absolute distress, like the day when I was put on steroids, and thought I was about to loose my mind (and life) my writing turned to a mismatch of scrambled words, varying in size and voracity. But ultimately I found peace. The fear eased somewhat. I could make some sense of what was happening to me.


a page from Corina Duyn's diary when on steroids, which was a very frighteneing experience
writing about the fear brought on
while on steroids
my writing showing the distress 
Writing became very important to me in terms of writing myself into wellbeing, but it also became a tool to have fun with. I realized that I love words (see links below), I loved looking up words in the dictionary. All of the titles in my book Hatched came from researching 'bird' and 'egg' related words in the dictionary. Bliss! Fun and the power of words made it into all my books.

Writing, I realized the other day when I paged through an old scrapbook, came from childhood. Again, the hidden treasure found again.

Writing, I now know features in my family too. My great grand father wrote letters for other people. My father and mother both wrote their thoughts down too.

My dad (1917-1977) wrote this tiny diary during the months before the Netherlands went to war in 1939, and some experiences during the war. It is a treasure to have his words in my hand.
I am translating the diary with the help of my brothers Hans and Joop.
Some of the thoughts shared are funny, others are heart wrenching.

a page from my Corina Duyn's father's 1939-42 dairy, with very small handwriting
a page from my dad's 1939-42 dairy
My mother (1921- 2007) started to write a series of reflections of her life while in her seventies and eighties. A life of poverty during youth, but with amazing resourcefulness and strength of mind by her, her parents and siblings. There are some very funny accounts too. It is an interesting insight into her life. 

page from my mother's diary with a story about
Sinterklaas of 1933.
My brothers wrote detailed diaries during their travels in the eighties, to many places that would not be safe to visit in modern times. Kees has been compiling his words and images of the journey to and in Africa, and I am looking forward to see and read this later in the year!

So, writing might be in all of us.

I hope that this post might inspire you to pick up your pen, or maybe you share witn me and otehr readers your story about writing?

With every best wish.

Corina

If you share my post or blog on social media 
with a few of your own words on why you shared it - 
please email me a link and your postal address 
and I will post some bookmarks from Into the Light
as a Thank You for sharing!


links:


Saturday, January 14, 2017

Interdependence - A story of Trees, Illness and Acceptance

Illness brings a level of dependency which can be very challenging to accept.  But maybe we are all dependent on each other to some degree... 


"These trees in your photo remind me how the trees can teach us in quiet ways the timeless wisdom of waiting, enduring, drawing strength from others (which we often seem to find so difficult to do!) and finding hope for springtime and the future."
Joyce Barrass

trees leaning into each other as if needing support. photo by artist and writer Corina Duyn

'The Oak tree is the emblem of strength and hospitality.' 

Kathleen Madge - The World of Living Green. 

Print from the  Into the Light  series


The following thoughts were the starting point for one of the reflections in Into the Light:

At the edge of Annaghmakerrig Lake a young hawthorn tree had grown leaning against a much older and stronger oak tree. It was as if it needed support to grow. To survive.
It made me think about dependency, about asking for help. Accepting support.

Cheri Register contemplates in her book Living with Chronic Illness: ‘Asking for help is, first off, an admission of helplessness’.

I certainly have struggled with dependency for the duration of this illness. I can still find it difficult to ask for help.
I am resourceful.
Make changes, re-think if it really needs to be done; divide up the task over a longer period...

At times I simply have to ask for help.

No matter how sophisticated the intellectual acceptance of illness is, it stays emotionally difficult to say,  I can no longer live without support.

Susan Alm puts it clearly: 'It is very frustrating when you can’t pick up a spoon or stir a pot of soup. When you have to have someone come in and do the simplest, very basic things for you, it is very difficult thing to deal with. And it is difficult not just because your life is disrupted by having another  person there, but because it's admitting that you can’t take care of yourself.'

So, What does independence really mean?

'Independence', suggest Jenny Morris in her excellent book on disability studies, Pride Against Prejudice, that 'to the non–disabled world the term is used in a specific ideological contexts; it means both physical and emotional autonomy and the focus is on the individual's ability to achieve this autonomy. When you can’t carry out these tasks you become in a sense helpless and subordinate - independence is assumed to be impossible.' Simon Brisenden refines independence further: 'The disabled are victims of this ideology of independence. It teaches us that unless we can do everything for ourselves we cannot take our place in society.'

Now that made me think.

It can be argued that my place in society is that of an artist and writer who conveys a message about living with the challenges of chronic illness/disability, through words and images. In order for me to do this at the best of my ability, I need assistance.

I realize that my dependency is not necessarily one-way. Maybe it's more a case of inter-dependence. I need somebody. Somebody might need me; maybe to earn a living, or to learn from my creative work.

This thought takes the pressure off ‘needs’, and as Cheri Register suggests, 'If we are allowed to retain control, we can accept offers of help without feeling's diminished by our dependence on others'.

Bonnie Klein, who wrote about her stroke puts a practical spin on independence. 'I no longer see independence in terms of how far I can walk, as I did in physio, but as control of my life, measured not by the tasks I can do without help but with the quality of my life with the help that is needed.' 

That, to my mind, is very powerful indeed. 

The focus is on the quality of life, needs be with support. 

To bring this to an even more human level, she suggests, 'Maybe independence is a misleading concept. Each of us is dependent on others. Perhaps independence is not the ultimate goal, but interdependence: the possibility of doing with and for each other, the ability to ask for help with what each needs.'

Or as Sister Stanislaus Kennedy puts it beautifully that all of us have unique gifts. 'We live better when we share in the presence and talents of others…'

Maybe we are both the Oak Tree and the Hawthorn. 



Links:
  • This story was the one of the starting points for what came to be my Into the Light book in a box, which consists of a set of images, and short quotes.
  • The image is one of the A4 prints available here
  • Joyce Barrass who instigated me to write about this image, has her photos here and Blog
  • Quotes are from: Kathleen Madge, The World of Living Green 1947, London and Redhill Lutterworth Press  page 16; Cheri Register. Living with chronic illness, page 73, Susan Alm. Quoted by Register Page 36; Jenny Morris, Pride Against Prejudice: Transforming Attitudes to Disability. Women’s Press 1996. page 13 & Morris, quoting Simon Brisenden, page 140; Cherri Register. Living with Chronic Illness, Bantam Books, 1992, Page 59; Bonnie Sherr Klein, Slow Dance A story of Stroke, Love and Disability, PageMills Press Berkeley, 1998, page 220 & 278
    Sister Stanislaus Kennedy, Gardening the Soul – A spiritual daybook through the seasons. Simon & Schuster/Townhouse, 2001, page: 5 June See Also HERE

Friday, January 13, 2017

Medication, or Meditation


A few more words to think about


Meditation

as 

Medication




Beach Bliss sculpture , bust of head covered with seaweed hat and scarf, photo on Tramore Beach by Artist and Writer Corina Duyn 2016
Meditation ... Medication
Beach Bliss sculpture by Corina Duyn 2016

A quote by  Corina Duyn


Links:




Thursday, January 12, 2017

Traveling through illness and cyberspace with great companions.

The real voyage of discovery consist not in seeking new landscapes, but in having new eyes.

Marcel Proust  (quoted in Into the Light )

set of wind up toys depicting disability and art, sitting on shelf. photo by Artist and writer Corina Duyn

These represent you, my readers, and travel companions!


Illness
was not the road
I had planned to take

But I have been granted 
an exploration
of some beautiful 
new landscapes
Corina Duyn - Into the Light



That is a quote from my most recent book, a book-in-a-box called Into the Light 
It is one of the last pages, in which I had to acknowledge that although illness was certainly not the 'plan' in my life, it brought me to some amazing times too.

I learned to embrace my writing. That I do have a voice and even have something to share.
I came to understand that creativity can come, and probably should come from a very deep place. A place I would not have visited if it was not because of this very long adventure through illness. And Stillness.

I fought. I rebelled. Against life. And my body.
I conceded that we have to work together in order to live the best life we can.

We came to the understanding that a LOT can be achieved in very, very short spells of time.
The Twenty Minute Rule came into being. (Will write separate post about this soon... watch this space).

The New Landscapes are also how I can now really see the world around me. To explore nature which much more attention. To be part of it.
To truly value the friendships in my life. 
To savour the written word.
To enjoy art.
To be able to share.
To being grateful for so many little things.

One of the very recently explored territories is that one called social media in cyber space. Although I enjoyed writing my blog for years, my words and images were floating around cyberspace rather leisurely ... Now, with the support from from very strong ladies, and some men too, I have my words land in places where people actually get to read them.  

And my goodness, you are really reading my words, and interacting on my blog and facebook, though messages and emails
I would like to thank ALL OF YOU for being my wonderful, entertaining, funny, loving travelling companion on these daily adventures.

I love to invite you travel along with me over the next few months. Please leave a comment below this post on what places you would like me to bring you to. What other landscapes I might have travelled and you would like to see or hear a little more about.

Thank you so much.
Be Well.

Corina - Your travel Guide for Travelling from illness to Wellness

Ps... You can help me get more people to join us, to fill the train as it were, by sharing my blog on your social media. Thank you Links:

  • Quotes are from Into the Light, available here
  • Full list of authors referenced in Into the Light, see here
  • My Facebook Art page where I link my Blog Posts, please "like" and ask your friends to "like"