MEme is ready for the Dublin Protest

MEme M.E. me is ready for action

MEme and the Dublin Protest

In 1998 I got suddenly very ill with suspected meningitis. This was luckily not the correct diagnosis. However, this sudden onset of extreme fatigue, terribly headaches, the inability to coordinate my movements, to sit up for any length of time, or to have a conversation was the start of a now 18 year long journey with M.E. (Myalgic Encephalomyelitis).

My life changed within weeks from being a self-employed artist to needing care with even the most mundane of actions, like opening a tube of toothpaste. The ability to create detailed sculptures vanished. My love of reading became a task no longer available to me.

The first few years I was more or less housebound. After begging with the HSE, I was given home-help every day of the week, twice a day. At first I was told this was not available to me, as I was only 36 years old. You needed to be over 65... But I got it. Maybe as I otherwise needed to be taken into full time care? In today’s world getting home help for so many hours seems like an absolute miracle. 

Times have changed.

What has not changed that in all these years there is still not an absolute diagnosis of M.E. given by any doctor in Ireland. The term Chronic Fatigue Syndrome is more often used, but is in no way correct.
There is no consultant in Irish hospitals who deals specifically with M.E.

It is not unlikely to end up in hospital and meeting a doctor who would ask: “M.E., What is that?”

Often M.E. is written about in the media with a notion that “It is all in your head”. A purely psychological illness. Trust me, it is not. I wish. I wish I could get my body to function properly again through talk-therapy, or through anti-depressants. I wish.

Throughout the years I have found ways to make my life the best it can be, within all the limitations I still experience. Mainly through creativity, pacing and silence. This is not a cure, by any means, but a positive halfway point. A place in which I can escape the reality of illness.

There is no proper interest from the HSE to deal with estimated 14,000 people living with M.E. in today’s Ireland. To bring this injustice to the attention of politicians and the HSE, a group of inspiring (mostly) women have come together to see if this can be changed.

On Thursday 11^th May there will be a demonstration at the gates of Leinster House, between 11am and 3 pm, under the Millions Missing Banner. We have asked politicians to come and talk to us. To our representatives. 

All the millions of people living with M.E. world-wide who are missing from schools, work places, family events… from life as we know it.

MEme M.E. me is ready for action

I won’t be able to travel there myself. But MEme (a little stuffed penguin: M.E. me) who is my alter-ego, and has traveled for many, many years to places and people I could not get to, will be taken my place. 

And hopefully will help in our bid to change the lives for the better of all of us living with this most challenging of illnesses. MEme will be there with some of the people who live with M.E. and their carers, and among 250 pairs of shoes of those who can not attend. Accompanied by a few words on where they are missing from.

We would like to ask you for your support. Many of us will not be able to travel to Dublin and will be protesting from our beds, couches and homes through social media. Please be at Leinster House instead of us?

Thank you!

Contact Corina Duyn

MEme M.E. me is ready for action

Further Reading:

• M.E. information Pack
• Millions Missing links page 

Gert Roos

Gert Roos 

24 December 1953 - 29 March 2017

Today is for my dear friend Gert Roos.

I am honoured to have had the friendship of this beautiful man for 33 years.

Gert Roos 

24 December 1953 - 29 March 2017

Gert is being laid to rest today in Bloemdaal (Holland)

Peace be with you and with your family, 

especially Marga, Guus and Hanna

and all your friends.

Much love

Corina

poem by Lao Tse
on Gert's card

Drawing made in memory of Gert by SNAB

I met Gert in 1984 when we both started working at a newly establised group home for people with leanring difficulties, then called 'Het Wad', in Haarlem (Holland). Our close connection was quickly established, and never faded. Even though I left Holland five years later.

We remained in touch via letters, phone calls, and visits at their house or here in Ireland. But there was also a connecting which did not need normal forms of communication. A spiritual connection. 

Which I feel is still here, even after his untimely passing last week.

Some memories of Gert Roos
with his daughter Hanna, and wife Marga in their garden last September;
Eating the Dutch 'kroket' in Haarlem;
A photo from ten years ago, when Gert and Marga got dressed up
for a seventies party- large glasses over his own;
We were getting ready for the group-home cycle holiday and Gert
took out the broken bicycles on the day we were to leave,
'scaring' the parents;
And Gert and myself at a campsite, the last day I spend time with him
and day of our last hug.

Over the past two years since Gert became ill, Mariela and I travelled to Holland to spend time with Gert and Marga. I am so glad that it was possible to make these journeys. It saddends me to no end, that I am not there today to share his last journey with all those who love him.

For the last visit I had gathered some images of the time we worked together. These always made us laugh. There are so many stories. They bring a smile to my face even when I write on this sad day.
And yet my heart is crying. That same day we shared the sadness of his ailing health. A mixed bag of emotions.
Since that last visit we stayed in touch via the phone, and via many messages, sharing funny memories, beautiful memories, music we like at this moment, photographs, stories, sadness, heartbreak, encouragements, understanding and gratitude.

I am so pleased that Gert decided to ring me on my birthday, 19 days before he passed away. I had not heard his voice for a few months. I am glad that he rang when he did, as I was almost out the door for my hospital appointment. I would have missed his call.

For the past while, but especially since the news of his passing last week, a piece of music, a word on the radio, an add on the telly, a plant on my garden,...  all bring stories in my mind of the friendship we shared.

Today Mariela and I will be at the funeral, but here in Ireland. We will go to the cathedral, which I know had a special place in Gert's heart, and celebrate his life well lived during a lunch afterwards.

MEme, my little penguin will be my 'aide-de-camp'.  My brother Hans, and friend Christine will be at the funeral in Holland too.

A sad day.
But I am grateful to have had his companisonship, his guidance, his frienships, support, encouragement and love for all those years.

Rest Easy Gert

our shared love of music
I have this note in the CD case for
maybe 15 years?
I listened to this often over the past while,
and after hearing the sad news.
("Dear Corien, Enjoy the Fado from Misia. I am entralled by it.
I experience it as a positive melancholy.
I wonder what you think of it.
Kis, Gert)

MEme, my alter ego M.E. (CFS) & me

A meme is "an idea, behavior, or style that spreads from person to person within a culture". 

A memeacts as a unit for carrying cultural ideas, symbols, ...

But, my MEme is my alter ego who travelled the world for me to friends, family and strangers when I was housebound in the early years of illness (ME/CFS). She started her --- our--- travels in 2001. Long before the meme's becoming a trend!

She travelled by post, armed with a diary and disposable camera. This was years before digital cameras, smart phones and social media. Whoever had Meme would write in the dairy what "we" had done, and took photos.

When the diaries returned to me, I remember lying in bed, and REALLY feeling that I was looking back at my own adventures.
It was powerful.
It still is.

MEme has her own blog where a few of her adventures are documented. Travels to Holland, Israel, Eirtrea, Ireland and Canada, that I can add more of her diary pages there, now it is easier to take a photo with my smart phone and upload the images. In the past I had to scan, and edit the images. I ran out of steam to do that. Other travels were to Chile, Australia, Morocco, UK, Yugoslavia ...

MEme having a bath before travelling to Holland

MEme is on the road again.
She visited Eimear in Loughrea, Ireland during February, and she took off for a visit to my childhood friend Henneke in Holland a few days ago.

Corina and Henneke in 2011

Henneke and I met up again in 2011, after decades of not having seen each other. I had moved to Ireland in 1989. But we probably saw each other last in the late 70's.
We met in secondary school and we suggested to our classmates that we were twins but brought up in different families...

Anyway. We made contact again after Henneke found me on the Internet. We started writing letter- the ones that arrive in the post- and during one visit to Holland in 2011, we met in a seaside town not far from where we grew up.
For years afterward I was not able to visit Holland again, and so have not visit my friend in her house.

Now "I" can.
MEme will go in my place, and I am very much looking forward to it!

MEme ready for travel

Further reading and links

• MEme's Blog

MEme

Ever heard of a Penguin, having it's own Blog... well, you have now!

A decade after I send my "Alter Ego" MEme (M.E. - me) into the world, I have finally found a way to bring her most entertaining and at times educational diaries to other readers. 

A blog! See MEme's Travel Blog

In 1998 I became ill with the chronic and debilitating illness M.E. (in the US called CFS). 

Within a very short space of time, I became more or less housebound.

Stuck in bed and wishing to visit my friends in their homes, I came up with the idea to send a 'representative' to them. First I thought to use one of my Artist Dolls, but these would be to big and to fragile to send by post. As I liked penguins at the time and had this cute little one, I settled to have her as my 'alter-ego'. (I did check with my friends if sending my alter-ego into the world would be a good thing to do, or had I truly lost my mind at this stage....)

Well the rest is history, as they say.

MEme started her travels on the 8-8-2001 and travelled for many years, (and has great plans for more adventures). On her blog I will share with you abstracts of pages written, and photographs taken, by very brave and creative friends and family.

Thank you all of you who participated. 

When the diaries landed in my house again, I truly felt that I DID go on a holiday and that I was looking at my holiday snapshots.

Hours of fun!

If you'd like to read the updates of her travels, please be sure to sign up as a follower on her MEme's very own Travel Blog

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... (am not on FB at present). 

Many thanks & Lots of love Corina

Inspiring Doll Artists

Who rules the moon and the stars © Marlaine Verhelst             

To continue, what looks like to be a series-in-the-making, I would like to share with you the work by two Doll Artists- Marlaine Verhelst and Hennie Koffrie, both Dutch, who greatly inspire me to continue to create and to be as imaginative as one can be with design and the use of materials.

I have worked with Marlaine on a three occasions, twice during a workshop in France and once in her home studio. I very much admire her work. Marlaine teaches all over the world. If you like to read  more, please visit  Marlaine Verhelst's blog. or here for a bio

To me, her fantasy figures are beyond imagination.

"Fly like a Bird" © Marlaine Verhelst  

Hennie Koffrie is a friend and colleague of Marlaine. They travel together to various Doll Events all over the world. I haven't yet had the pleasure to meet Hennie, but someone/something did in my place (see below).

Hennie's work is wonderful. Looking at her images gives me the freedom to create whatever is in my head- to use whatever materials will come my way; to tell a story. I can't wait to get started.
(Studio nearly ready!)

"Last Mile" © Hennie Koffrie

MEme:

Years ago, when 'travelling' to my bathroom or kitchen was an event in itself, I sent a tiny stuffed penguin out into the world beyond- she became my alter ego. MEme (M.E.- me) travelled by post to many many countries and visited friends and family, but she was also introduced to people I've never met, and places I've never been.

MEme's carers wrote in her diary and took photos of the adventures. When the diaries came back to me, I really DID feel I had been away on a break. They have given me hours and years of comfort, laughter and gratitude.

During the time MEme spend with Marlaine ('02) she was brought along to a Doll Event in Washington. MEme shared a room with Marlaine and Hennie. I have this wonderful photo of MEme getting a kiss from Hennie! When I looked for a web-link to Hennie's work I couldn't stop laughing when I saw MEme in the hands of Hennie! 

Hennie with MEme- my alter ergo

I keep meaning to scan the pages of MEme's diaries and put them up on my website- so you can all enjoy the adventures and funny images.... but it is such a big job. Anybody offering their services to do this....? 

I can ask, can't I :-)

For some of my own Artist Dolls of the past see here