Responsibility and will power

We are not responsible for our illnesses, we are responsible to them.

Kat Duff - The Alchemy of Illness 

Morning all,

I hope this find you as well as well can be.
I am a little too tired to write much today, but I would like to leave you with a page from my book Into the Light to ponder over. And suggest some further reading, see below.

When illness 

persists

we are often held 

responsible

as if we lack the

willpower

to recover

We should 

simply 

think 

we are well

Thereby disregarding 

our reality

As if thinking

we can climb that stairs 

will actually get us there 

Further reading and links:

• And as the top quote is from The Alchemy of Illness by the brilliant Kat Duff,  I would like to suggest that you head over to 'The Offerings from the Well Spring' - a wonderful blog by Therese Doherty who writes here about the Alchemy of Illness 

dreams and M.E.

Throughout the years of ME I must say I had some

Very entertaining 

and at times rather peculiar dreams

These are a few words 

from the early years- or nights

A page from Hatched

This is a page from Into the Light

In my dreams

I swim

run

climb mountains 

or am back at work

A life full of possibilities

Or

I am confronted by 

obscure obstacles 

when negotiating

the road with my 

wheelchair

Which leaves me 

searching

for a place to sleep 

at the moment of 

wakening 

...........

That was the kind of dream 

I had last night...

I was too tired going to bed, 

so lead a dubble life, 

and feel even more tired 

after awakening...

gratitude

In this world

This fast

world

I am full of

Gratitude

To be able to

watch

a beautiful

world

unfold

in front of

my eyes

A world

that is 

my garden

Apple Blossom

Apple blossom

Dandelion

Bean sprout

I hope you can find yourself a patch of nature today.

Be well

We need to tell our story- revisited

Last year I wrote a story about M.E. 

About being sent to a psychiatrist.

About the Media.

About the frustration of incorrect reports.

About giving the wrong people airtime.

We need to tell OUR Story! 

As ME Awareness week 

and the Millions Missing Protest in Dublin 

on the 11th May is almost upon us,

 I decided to reshare this story. 

WE NEED TO TELL OUR STORY can be FOUND HERE 

Sample page of "Into the Light" by Corina Duyn 

Sample page of "Into the Light" by Corina Duyn 

sorry, Cats again...

What do you do with an uninvited, four legged visitor

who presents himself into one's garden...

and has no intention on leaving anytime soon

A visitor

Yesterday, my Sally Girl (Cat) had a little verbal row with a cat on the other side of the wall.
Later on I saw whom she might have had this stand of with.
A young cat was sitting on the top of my neighbours shed and looked into my garden. Quite at ease.

The cat must have known that Mariela was here. Cats seem to write and advertise about her in the Lismore Cat Daily,  as any cat who either finds herself with unwanted pregnancy, is in need of a new home, or in need of medical care would find Mariela...

And so the new Cat story begins...

The cat was fed.
He was extremely hungry.
Mariela brought him to the vet as he has some sores on his skin.
He received medical attention and is scheduled for neutering.

Mariela is on a mission to stop the unwanted increase in the stray cat population in Lismore. And is very successful in this.

Anyway.
It is a lovely affectionate cat.
He wants to come in.
But I need to have a chat with myself,
                   and with Sally Cat first.

Do I want another cat?
I didn't even wanted Robert, or Sally... But I loved and love them both dearly.

But can I cope with two cats?
Do I want two cats?
Does Sally want a playmate?
Or is she perfectly happy with the arrangements she put in place to make my house her home?

What about my health?
What about the cat's health?
It is in need of care.
Can I give this?

little tom cat looking for a home

I felt guilty having this gorgeous little cat out during this very, very cold night.
I did make it a bed in the lean-to where my scooter is parked.
I found him there this morning.
He was very happy to see me.

little tom cat looking for a home

 I put photos of the cat on facebook.
I just made a poster for on my wall, and for the Vet's office.

Please, please. Find this little cat a loving, caring, home.
and preferably not mine...

Will keep you posted.

Snapshots: The Hatch - Het Luikje

SNAPSHOTS

a book about the challenges of life, but also about resilience, creativity, and joy. 

een boek over de uitdagingen van het leven, maar ook over veerkracht, creativiteit en vreugde.

With stories written by, and about Jan and Miep Duyn.

This memory was written by Kees Duyn

Page from Snapshots - edited by Corina Duyn

Page from Snapshots - edited by Corina Duyn

THE HATCH

One early evening when Pa was playing with all his boys, Peter, Kees, Hans and little Joop. Running around from the living room to the kitchen back and forth, to do what ever dads do. While we were all running around, Pa ended up in the hallway of our small house and all four of us were inside the living room.

The hallway and living room was separated by a door without glass.  We quickly closed the door behind Pa to keep him in the hallway.  

Pa with all his power was trying to push the door open with no luck.  We pushed as hard at the door to keep Pa outside.

After a while we felt that Pa had given up and we all relaxed a bit.  But to our surprise we found Pa now also back in the living room helping to keep the door closed. We all looked over our shoulders and saw Pa’s hand on the door.

Pa, as big as he was managed to crawl to the tiny hatch between the kitchen and the living room.  How he got through there is still a miracle today.  Maybe Ma greased him with butter and helped pushed him through that small opening.

HET LUIKJE

Op een avond speelde Pa met al zijn jongens, Peter, Kees, Hans en kleine Jopie. Rondrennen door de woonkamer naar de keuken heen en weer. Doen wat vaders doen. Terwijl we allemaal rond rende, belandde Pa in de hal van ons klein huisje, en wij vieren waren in de woonkamer.

De hal en de woonkamer was gescheiden door een deur zonder raam. We deden snel de deur dicht achter Pa, om hem in de gang te houden.

Pa met al zijn macht probeerde, zonder geluk, om de deur open te duwen. Wij duwde heel hard tegen de deur om Pa buiten te houden.

Na een tijdje leek het alsof Pa het had opgegeven en we ontspanden allemaal een beetje. Maar tot onze verbazing vonden we Pa nu ook terug in de woonkamer en hielp mee om de deur gesloten te houden.  We keken over onze schouders en zag Pa's hand op de deur.

Pa, zo groot als hij was, was geslaagd door het kleine doorgeefluik tussen de keuken en de woonkamer te kruipen. Hoe hij doorheen gekropen is, is nog steeds een vraag. Misschien had Ma hem ingevet hem met boter en duwde hem door die kleine opening.

•  pre-orders of Snapshots (€10) HERE

The Wall

I had hit The Wall, but with lots of help I climbed over it again.

There were many reactions to my post yesterday about dealing with non-believing-doctors, pain and the vulnerability of illness.

A big Thank you to friends who visited, spoke with me over the phone or via Skype, and all the well wishers via cyber-space.

Also I realized that the resilience embedded in me by my parents and grandparent (which I truly understood more because of the compiling of  Snapshots ) stood to me, once again.

Yesterday I was a lot more at ease and even got to help a tiny wee bit with putting Strawberry seedlings in pots.

Mariela dug up the strawberries plants I had wanted to remove from a small patch in my garden. It was too crowded...
Some plants are now in my greenhouse, others in pots outside.

I put a few of the seedlings in small pots. Mariela filled the pots with compost and watered them. For most of the time I was lazily 'luxuriating' on my greenhouse bench.
And had reached the point again that All is Well.

Strawberries on The Wall

The majority of the strawberry plants made it onto The Wall...
The wall doesn't sound the same anymore since a certain man from the US put a different meaning to the word Wall.... 
Anyway, my wall.
Strawberries and parsley, beans, and soon peas, tomato plants, and other bits and pieces are for sale from my wall. Mostly two pots for €1, unless it is a bigger plant...

It is a lovely way to share the bounty of a small garden. It also brings communication with passers by.

The shop keeper Sally

The shop keeper Sally

Parsley - on The Wall

Bean Seedlings on The Wall

Links and further reading

• vulnerability of illness
• Resilience of my parents and grandparents in Snapshots
• Join in the Crowd Funding for Snapshots
• The plan for digging up the strawberries
• Apples on The Wall, last autumn

Greenhousing ...or having to face one's vulnerability

" ... just to be able to stop and, instead of catastrophizing what might happen, 

to say, "I'm just so grateful, because to feel this vulnerable means I'm alive."

Brené Brown: The power of vulnerability 

'greenhousing'

Last week I underwent minor surgery to remove a Lipoma from my mid back. It had been there for a few years and it had given me a lot of grieve. Most movements with my (left) arm turned quickly into pain in my back. Bad pain. Over the years I had to limit all activities to not get to this point of pain.

For years I had asked doctors to look at it, to remove it. I pleaded with them. Please remove it.

In January 2015 my neurologist took me serious and asked me to come into hospital for a 5 day stay to look at this part of my back, and my whole spine, as I have other issues to.

This happened in June 2015.

But. He was on holidays so someone from his team took over my care. 

It was like I was a completely new patient. Plans for MRI, Heart scan, physio etc were only made on the second day. But for most of the week I sat up in bed. Frustrated, as nothing was happening. What a waste of HSE money. To occupy a bed, with very ill patients on trolleys downstairs. Anyway, My biggest overall goal was to Get That Lump Out!

On the third night, I was woken up at half 9, and was taken to the MRI department. 

On Friday- my last day - I was told that the lump was "just" a lipoma. And in order for it to be looked at I had to be seen by a surgeon .... THROUGH OUTPATIENTS... his blew my mind, as I was IN the hospital. The surgeon or his team were probably walking past my ward every day, and could look at me, and my scan...

And I was given a lecture about 'happy hormones' ie. In other words: The pain is in your head...

I waited for over a year to get an outpatient appointment with the surgeon. I was on a waiting list.

"Yes. We can remove it, but can't guarantee that it will solve your back pain." He was a kind man.

Anyway. I ended up on a new list.

The surgical waiting list.

7th April 2017. I got a call if I can come in and have the lump removed on the 12th April. Sure!

(Help.... be careful what you ask for as it might just happen...)

I got worried about the surgery. But mostly about the anaesthetic. ME and Anesthetic are not greatly compatible.

Yes, I was very nervous.

But the doctors (3) and a nurse, were extremely kind and understanding. They used a non-adrenal-local anaesthetic, as requested. The nurse held my hand and coordinated deep breathing with the moments of excruciating pain.

The lump was much bigger, and deeper than anyone had expected, and not the neath little domed piece of fatty tissue just under the skin, as expected by the medical team. Seeing the extend of this lump, they concluded that it had been there for a while - and was thus harder to remove- that it had a weird shape and that it must have given a lot of pain... YES! But nobody had believed me.

They had great difficulty cutting and pulling it out of my back... It was horrible...

So, roll on one week. Or ten days by now.

The pain was and is bad.

But I am hopeful it will eventually will solve the problems I was having. If I can be patient right now.

Emotionally. It is painful too.

That is where Vulnerability come in : the quality or state of being exposed to the possibility of being attacked or harmed, either physically or emotionally.

Over all these years of living with ME, I had to greatly adapt my way of living. Of how I conduct my activities. Look after myself. Ask of help. Find way to do what I like or need to do. I am pretty good at this (if I may say so myself).

But.

After surgery, I needed soo much more rest.

It turned out I could not use my left arm for anything. Not even having it lie on my desk and use the keyboard of my computer. My arm had to be immobilized.

I had to immobilized.

But did not want to.

I wanted to go out and pull a few weeds from my garden. It makes me happy. Or empty a box with delivery from health food store. I wanted to re-pot the bean seedlings, cut a piece of bread. Go into my studio. Finish the Snapshots book edits.

None.

and when I did it anyway. All gave me grief.

views during 'my greenhousing'

Yesterday I finally gave in. Fully gave in. 

And did Greenhousing. This is not getting my hands dirty in the greenhouse, but putting myself on the bench. To rest.

Wrapped in a blanket. Pot of tea beside me. 

Basking in the goodness of the warmth of the sun.

Hearing the birds.

Watching Sally Cat find a place in the raised flowerbed to have her snooze in.

I did let a friend know that I was feeling pretty miserable.

All I had left in me were tears. There was no need to talk, but sharing my feeling via a text message gave me permission to just be. To be tired. To be in pain. To be sad. To give in to rest. To feel the fear- what if my back does not improve, what if surgery made it worse... 

To allow myself to be vulnerable. To feel those horrible feelings, that nobody wants to deal with.

I thought I had a good knowledge of my body, and my mind. 

But each new challenge requires to yet again visit those feelings of vulnerability. 

Knowing that if I do not delve into those feelings of vulnerability I also would not feel the joy and gratitude in my life.

views during 'my greenhousing'

I feel the better for my day of greenhousing and extended rest.

I learned to be a one handed computer writer. To take out two bits of shopping out of the box at the time. To fold one pair of socks at the time. To not want to go out on the scooter. To leave the weeds enrich my garden in their own ways.

To be.

To let it all be.

To let me be.

Links and further reading

• If you have a little time, I can highly recommend this very entertaining Ted Talk: The Power of Vulnerability by Brené Brown: about our ability to empathize, belong, love. In a poignant, funny talk, she shares a deep insight from her research, one that sent her on a personal quest to know herself as well as to understand humanity.  

Millions Missing Event in Dublin

Reference Page with post links about the Millions Missing Protest 

at Government Buildings, Dublin, Ireland

11th May 2017. 11 am- 3 pm

(will be updated regularly, so please call back)

General information about the Event

• Brief details about the event and list of politicians who agreed to meet us Website page (sorry, no longer available)

• What it takes to organise an event when most of us are ill

• Flyer with information about M.E.

• A comprehensive document compiled on behalf of The #MillionsMissingDublin Event Campaign about the situation of people living with M.E. in today's Ireland.

• For this Information leaflet in PDF format, please contact Corina
• Photos from the Event 

• Reflections on the Protest by Joan Byrne I have some hope, finaly

Personal stories by Irish people living with M.E., or their carers

• Camilla Cruise: from my bed to the Dail Gates
• MEme is ready for battle

Some other related ME. and ME awareness Stories on this blog

• We need to tell our story A response to false information on national radio

• M.E. What is that? A question about the lack of knowledge of young doctors in our hospitals

• M.E. to be highlighted at the next Intern tutorial A response from a hospital

• Click on the "tag" ME for blog posts by Corina Duyn

The joy of seedlings

Don't they just look so happy, and joyful to emerge?
'Arms' spread wide.
'Heads' up high.

A lesson from nature
A lesson from French Bean Seedlings.

Organising the Dublin Millions Missing Protest

People will not know anything about this world unless we tell them.

Havi Carel - Illness 

I'd like to share a few thoughts with you, that are playing through my head the past few weeks and especially this morning.

A few days ago I posted the first post about the Millions Missing Protest at Government Buildings in Dublin, on the 11th May. It was a post (see link below) about how everyone can get involved to highlight this event. To highlight the plight of people living with M.E. in this country.

Over the next few weeks I will give this Blog Post Space over to some of the voices of my fellow ME'ers in Ireland. Or the carers of teenagers, or other family members.

Today though, my thoughts are with the organizers.

Organizing any event can be a struggle.

Organizing an event without being able to meet face to face is even a bigger struggle.

All of the organizers of the Event are ill, or are carers of those who are ill.

My hat off to all of them, for putting in their valuable energy for the greater good.

I am not going to name names, as I might forget someone.

But 

• Posters have been created and printed. 
• They have to be mounted
• Politicians have been contacted
• A draft letter and contact details were shared
• leaflets to hand out to the public have been designed
• comprehensive brochure has been compiled with information for the HSE and Government
• This information was shared and read, suggestions made by many over the course of a few weeks
• The final edit of this was made available (contact me if you like to receive PDF)
• Social media pages, on several platforms have been created
• and promoted
• and managed, and images edited
• Radio shows have been contacted
• TV shows are being approached

Remember- all not done by sitting around a table and dividing tasks- This is ALL done via Facebook

(OK. I was never a fan of facebook, but can see it's uses...)

• Letters are written to go to the newspapers 
• The Shoe Aspect of the Event has been organised and someone has offered her house as collection point
• The Garda was contacted to see if permission to protest was required
• Thoughts were put in about health and safety (we are ill after all...)
• The HSE was contacted and progress made to amend the wrong information about ME on their website
• etc.
• etc.
• I am sure I have forgotten half the jobs that were done...

And with all that comes pressure.
Pressure and expectations. And worry.

• Will the article be accepted
• Will the poster be ok
• Will the brochure be good.
• Will the approach of TV program bring forth a favorable response
• What if it does not
• What will others think.
• I don't want to step on someone else's toes...
• I hope others don't get the wrong idea and that my article will definitely be printed in the paper.
• etc
• etc

My thoughts are with ALL those who have put in a lot, or a little of their time. 

According to their own capabilities and expertise.

I commend you all.

You are a Great Army of Warriors!!

Keep up the amazing work you are doing!

Further reading and Links

• We need to tell our story A response to false information on national radio
• M.E. What is that? A question about the lack of knowledge of young doctors in our hospitals
• M.E. to be highlighted at the next Intern tutorial A response from a hospital
• How to get involved in the Protest in Dublin social and mainstream media links
• Brief details about the event and list of politicians who agreed to meet us Website page

Snapshots of Jan & Miep Duyn

Since last summer I have been working on a book about my parents. 

It started of with just a translation of my dad's diary written during the first days of WWII. But it turned into a book... A book with images and short stories, observations written by both my parents and their 6 children. A snapshot of one family, but ultimately a story which would resonate with many families.

As we grew up in Holland and a lot of my family now lives in English speaking countries, Snapshots is in both English and Dutch. So the rest of this blog is also in English and in Dutch.

Cover of Snapshots Edited by Corina Duyn

The compiling of Snapshots was like an Archaeological Dig. Unearthing the stories of my parents Jan and Miep Duyn. 

It is filled with anecdotes and images about their lives. Although it is a book about one family, it has many universal elements: Anecdotes written by Miep about her childhood in The Netherlands of the 1930’s. Experiences of life during the WWII, written by Jan and Miep.

 Some stories are funny; others will take your breath away. It concludes with memories written by their six children. 

Snapshots is a book about the challenges of life, but also about resilience, creativity, and joy.

Available from the SHOP

A5, landscape, paperback. 96 pages. Black and white. ISBN 978-0-9563589-5-0

Het opmaak van Snapshots was als een archeologische opgraving. Het tot licht brengen van de verhalen van mijn ouders Jan en Miep Duyn.

Het is gevuld met anekdotes en foto's over hun leven. Hoewel het een boek over één familie, het heeft vele universele elementen: Anekdotes geschreven door Miep over haar jeugd in 1930’s Nederland. Ervaringen van het leven tijdens de Tweede Wereldoorlog, geschreven door Jan en Miep. 

Sommige verhalen zijn grappig; anderen zullen je de adem benemen. Het eindigt met herinneringen geschreven door hun zes kinderen.

Snapshots is een boek over de uitdagingen van het leven, maar ook over veerkracht, creativiteit en vreugde.

diary page from my mother Miep Duijn (Duyn)

Sample page from the book-
Text in both Dutch and English

Introduction

A few years ago plans were hatched to gather the whole Duyn family in Holland on the 4th June 2017, to celebrate the centenary of the birth of our dad, granddad and great-granddad Jan Duyn. He passed away in 1977 aged 59. Our family has not been together since the passing of Miep Duyn-Kleijne in 2007. 

Two of my 5 siblings, Ina and Hans live in Holland, our country of birth. (Ina lived on two occasions in Ireland. Hans travelled the world during his twenties). Peter emigrated to Canada in 1971, but made Chile his home. Kees lives in Canada. Joop, and myself, Corina, live in Ireland. 

For this reunion I was asked to translate the small diary written by our dad at the start of WWII. Some stories are funny. Others difficult to imagine: For hours and hours we ploughed through a damp and impassable forest path in a foggy, dark night, with nothing more than the pure reality of war to carry with us. Others are beautifully descriptive ... And then we had our finest moment: lying under the apple trees, smoking, happily telling each other of our experiences ...

But as I worked on transcribing and translating the very small handwriting, with the help of brothers Hans and Joop, this task turned into a much deeper project.

I found myself imagining my father in those moments. Wondered why he calculated the days and even seconds he was in the army. What was the story behind the Leipzig address? 

I started to re-read stories in my mother diary, compiled while she was in her late 70’s: Snapshots and funny anecdotes of her childhood; experiences during the war; meeting her future husband Jan; starting a family. 

And thus this project turned into an archaeological dig. 

I unearthed stories, and photographs. Found the links between my dad and mothers’ words. Came across information in other notebooks, and explanations online.  I bombarded my siblings with questions. I asked them for their memories. Many others were enlisted (see last page) during this dig.

This became a book of Snapshots. About family. About Challenges. Resilience. Creativity, and fun.

My dad suddenly died when I was 14. Through creating this book I became much more aware of his life, their lives, our lives. And of their influence on my (creative) life. All I can say is: ‘Thank You both’.

Corina April 2017

1939 Mobilisation. The Dam. Amsterdam

Diary page from my father Jan Duijn (Duyn)'s diary

My mother Miep, the year before she passed away.

Introduktie

Een paar jaar geleden werden er plannen gemaakt om de hele familie Duyn te verzamelen in Nederland op 4 juni 2017, ter ere van de honderdste geboorte dag van onze vader, opa, and overgroot-opa Jan Duijn (Duyn). Hij overleed in 1977, op 59 jarige leeftijd. Onze familie is sinds het overlijden van Miep Duyn-Kleijne in 2007 niet meer samen geweest.

Twee van mijn 5 broers en zussen, Ina en Hans wonen in Nederland, ons geboorteland. (Ina heeft twee maal in Ierland gewoond. Hans heeft veel gereisd tijdens zijn twintiger haren) Peter emigreerde naar Canada in 1971, maar woont nu in Chili. Kees woont in Canada. Joop en ikzelf, Corina, wonen in Ierland.

Voor deze reünie werd ik gevraagd om het dagboekje geschreven door onze vader aan het begin van de Tweede Wereldoorlog te vertalen. Sommige verhalen zijn grappig. Anderen moeilijk voor te stellen: Uren achtereen trokken we voort door een mul en onbegaanbaar bospad in een mistige, donkere nacht met niets meer dan de pure werkelijkheid van de oorlog mee te dragen.

Sommigen met prachtige beschrijving... En toen beleefden en we ons mooiste moment: het liggen onder de appelbomen, roken, gelukkig elkaar van onze ervaringen te kunnen vertellen ...

Maar gedurende het  overschrijven en vertalen van het zeer kleine handschrift, met de hulp van de broers Hans en Joop veranderde deze taak in een veel dieper project.

Ik werd me er van bewust dat ik inbeeldde hoe mijn vader op die momenten was. Ik vroeg me af waarom hij de dagen en zelfs seconden die hij in het leger was had berekend. Wat was het verhaal achter het adres in Leipzig?

Ik begon de verhalen in mijn moeder’s dagboek weer te lezen, verhaaltjes samengesteld terwijl zij in haar zeventiger jaren was: knipsels en grappige anekdotes uit haar jeugd; ervaringen tijdens de oorlog; ontmoeting met haar toekomstige echtgenoot Jan; het starten van een gezin.

En zo werd dit project omgezet in een archeologische opgraving.

Ik graafde verhalen en foto's op. Vond de connectie tussen mijn vader’s en moeder’s woorden. Kwam informatie tegen in andere schriftjes, en vond uitleg online. Ik bombardeerde mijn broers en zussen met vragen. Ik vroeg naar hun herinneringen. Menig ander werd aangesproken (zie laatste pagina) tijdens deze opgraving.

Dit werd een boek van Snapshots. Over familie. Over Moeilijkheden. Veerkracht. Creativiteit en plezier.

Mijn vader stierf plotseling toen ik 14 was. Door het maken van dit boek ben ik me veel bewuster geworden van zijn leven, hun leven, ons leven. En ook van hun invloed op mijn (creatieve) leven. Alles wat ik kan zeggen is: ‘Dank u beiden’.

 Further reading and links

• Purchase the book HERE . Thank you
• Creative Source
• Jan Duyn
• Miep Duyn