At present, I am utterly overwhelmed by the reality of M.E.

Sorry for not having been in touch as promised during my Puppet Travels.

Póilin looking out at the birds
(just like me)

To my astonishment, I did not even write one word in my personal diary/journal/notebook what ever one wants to call it. I came back with a completely blank (brand new- gorgeous leather bound) notebook.

When I think about it, maybe it is not so 'astounishing' as although I managed to do my talks and meetings - most of the remainder of my time I was resting. And tried very hard to stay as well as well could be.
I did it.
I am proud I did my talks. Honoured to have received such lovely responses. Grateful for the time I was given by other puppet makers/designers/performers to explore new skills and to find way to incorporate puppets in my journey with M.E. Touched by the kindness of strangers, who wanted to hear my story and by those who so kindly gave their time to support me.

But.

I am so utterly overwhelmed by the reality of M.E. By the onslaught this adventure had on my body. On my mind. On my conviction that I can rise above the challenges of my body. 

I can't.

And that is another reason why I still have not written one word in my diary. Because I know that if I start writing about the amazing people I met, the joy of 'all things puppet', the kindness, the opportunities, I will also have to fact that I feel utterly at a loss. That I am out of sorts. That I am so aware of the reality of even more limiting mobility, of needing more practical support, of the fight we - as people with M.E- have to fight in order to be heard and seen. To be accepted. To be understood. To be valued. To have our very real and honest experiences taken seriously by the HSE and the Government. To not be told that we are not ill.
Oh my goodness, do I want to be well!

I want to be able to follow up on the puppet and writing opportunities coming my way.
I want to 'go out and play'.
I want to write for journals. For news papers.
To go back into my studio and explore new ways of making puppets.
I long to go out and walk. To just leave my house - alone- and go to the supermarket - the bank- a cafe.
Go for walk outside my gate to the river I know is there.
Take a drive to the beach. A walk in the woods. To touch and smell the forest.
To see spring/summer arrive. To see the forest carpet of blue bells and wild garlic.

(of boy - this writing is taking a very different leap to what I thought when I turned on the computer...)

Anyway. If anyone dares to tell me that I am ill because of a lack of 'want', 

Well, as one of my puppets said:

'The next dr. who tells me 'it's all in my head

and that happy thoughts will cure me'

Well, I'd better NOT say what

I will do to them ...

MEAI

One of "The Girls" ready for the Protest in Dublin

Yes, I am utterly sad at the moment. 

I am sad because I am ill.
I am not ill because I am sad.

I am sad as I know of so many others with M.E. who are fighting all the time to be heard, to get support. Who are stuck at home and are doing their best to find ways to live well.

As you might know, I am a member of M.E. Advocates Ireland- a groups of 7 women, all living with or caring for someone with M.E. On our blog there are some harrowing, sad, powerful stories about the reality of life with M.E. And how wee see what needs to be - and can- change.

We campaign from our beds and homes.

We are campaigning for change - through the media - social media  - radio interview and a Visibility Protest on Thursday A 10th May at our Government Buildings  

I won't be there myself, but am doing my bit through the media. Travel, or staying overnight in a hotel is way beyond me at the moment. Even the thought of it is too much. 

Read article HERE 

Uprooting- and grounding 

To find me again, within the reality of M.E., I have been resting. Watching movies. Watching the birds. And been reconnecting with the earth. Every day I go out and clear a tiny patch in my garden. 5 minutes. Ten minutes when I am brave - or foolish. 

Feeling the earth. Smelling the earth. Touching base. Grounding myself, are hugely important.

 ... and funny enough I seem to have done the exact same last year when I felt 'out of sorts'  

after time away from all I know...

Slowly, I hope to gaining ground again.

Clearing my garden also creates a sense of space. Physical space in my garden, mental space in my head.

I hope that by having been brave enough to face my blog again, maybe I will truly pick up my pen and start writing. Start facing the daemons. Find that level of acceptance again and move on.

When the time is right, I will look at the photos of my puppet adventures. Listen to the talks I gave, and try to bring the experiences into focus, for myself and for anyone who want to hear/read it.

Thank you again to all who made the journey possible. 

In time I will understand the essence of this adventure. Learn from it and find ways to incorporate puppets and travel into my life.

Much love.

Corina

How hard does one have to fight to be heard

Beware this is a post about disappointment.
About the feeling to always have to fight for support.
About feeling gutted, and NOT be heard by an arts organization.
About always trying to find ways to live the best live I can.
Regardless of M.E.

I don't give up.
But I need support 
to live
to survive
to progress creatively.

Throughout twenty years of illness/disability 
I continue to learn.
And share my experiences.
Creatively.

I love life.
Even though I have to plan every single day 
in the tiniest segments 
to make my (creative) life happen.
And am digging SO deep (mentally and physically) 
to follow up on the amazing opportunities 
which have been presented to me.

What am I talking about?

Well, as you might have read/heard my puppetry work 

has taken me out of twenty years of (almost) creative solitude. 

It is hugely exciting.

I requested funding through an arts funding organization, 

to support me during this four week long opportunity.

To be able to 

Share and Learn.

But,

have just heard that I have been unsuccessful. 

A very generic letter was forwarded to me:

...

I was invited to talk at the Broken Puppet Symposium last year. This has lead to the opportunities in the UK starting in a few weeks.  In brief, I have been invited to give talks about puppetry, disability & health  at the Nottingham Puppet Festival. The Broken Puppet has their second symposium in Bath, where I have been invited as keynote speaker. In between these two opportunities I get to meet other artists and puppeteers. See more HERE. 

Don't get me wrong. 

I am not looking for easy hand outs here.

And, I have been unsuccessful with applications in the past. And with some I was successful.

The rejections this time however is hitting me deeply.

VERY deeply.

I feel (maybe unjustified, I don't know) that this is a rejection on the very journey I have undertaken to make life with M.E. bearable, and even fun. 

A rejection as an artist with a disability. 

A rejection as an artist who lives with M.E., which is so often still not seen as real. 

I have learned so much and have taken the opportunity to share what I have learned via my books, my art and this very blog. And recently sharing my work in a more hands-on way. Through facilitating puppet making workshops. 

Which is a beautiful journey. 

But is a huge challenge on my physical wellbeing. But my mental state is as important as my physical well-being.  And that is Also the experience I hope to share during my talks in the UK...

A few of the notes from my application:

• At this pivotal junction in my artistic career as a disabled artist, writer, puppet maker and facilitator, I have been invited as Keynote speaker at the 'Broken Puppet' (2) Symposium on Puppetry & Disability, and give lectures & and workshops at Nottingham Trent University during the Nottingham Puppet Festival, and Bath Spa University. 
• •'Puppet Place' in Bristol, whom is developing a knowledge base within applied puppetry, invited me to exchange knowledge and practical skills with their artists.
• All explore the intersection of the art of puppetry and disability;  how this can produce innovative art forms, and bring disability into the minds of a wider audience through the creative arts. 
• Throughout this month of talks, festival, symposium, research and training, I will have the opportunity to network and learn from other puppet makers and puppeteers, to greatly enhance my own puppet making practice.  
• Due to illness/disability I require a PA to support me throughout this month-long opportunity.

Abstract of support letters:

Nottingham Trent University

o   “Nottingham Trent University, in partnership with the Theatre Royal & Royal Concert Hall and City Arts Nottingham, is producing the first Puppet Festival for Nottingham in March 2018. As part of the Festival, we are promoting the craft of Puppetry through a series of talks and workshops. Your expertise, in both writing and disability arts would be empowering to both students and professionals. We would be delighted to extend an invitation for you to present the following: Puppetry- Health and wellbeing.  & Writing for puppetry.”

§  Sean Myatt, Senior LecturerDesign for Performance,School of Art & Design, Nottingham Trent University

 Puppet Place, Bristol:

o   “Puppet Place is developing a programme strand – Interchange –specifically to look at how to develop puppetry as an innovative art-form for disabled and diverse communities and we would love to share this research and our findings with you to develop both your practice and ours in the future. We would like to invite you to deliver a talk at Puppet Place to our community of artists and partner organisations regarding your experiences. We can also facilitate meetings with other artists and organisations in the city as you may wish to further your own practice.”

§  Rachel McNally, Puppet Place Executive Producer

 Broken Puppet (2) Symposium on Puppetry and Disability & Bath Spa University:

o   “I am delighted to invite you to be keynote speaker. The symposium is a collaboration between Bath Spa University’s Arts and Social Change Research Group, the UNIMA Research Commission, and Puppet Place. It will bring together artists, ¨scholars¨, and members of the public to reflect on ¨analyse¨ and further develop work in the field of puppetry and disability performance through exploring the ways puppetry and disability intersect to produce innovative art forms.”

o   “Guest lecture for the Bath Spa University Arts and Social Change Research Group. & Conducting a workshop with Level 5 Drama undergraduates.” 

§  Dr. Laura Purcell Gates, Reader in Drama. Director Arts and Social Change Research Group, Bath Spa University

I will go.

I will prepare for my talks.

I will learn and share.

And come home exhausted but I can imagine, happy. And fulfilled. And filled with material for another book. For more facilitating work. Filled with ideas for my own development.

I will get paid for the Nottingham talks, and for my travel. I will get paid for the lecture at Bath University.  But I still have to finance much of the accommodation and cost of sustenance for myself and the kind friends whom are staying with me during the month.

There has been kindness from family and friends too, in way of donations:

Kees and Janet ( BIG thank you). Hans and Loes; Mary C.; John E.D.; Mary Q.; Cora F.

Thank you,

 Thank you all who are with me on this journey. 

In spirit or through financial means.

Or by listening to my thoughts today.

If... you like to support me, 

please visit my SHOP for books, cards, bookmarks...

There there is also a DONATE button.

Much gratitude.

Corina

PS  I have asked for feedback on my application, which I hope to receive next week.

Puppetry & Disability. The contradictions of life with M.E.

Dear readers

Sorry for the long absence from writing, from showing up on this blog. 

Time just passed me by. So did the Christmas and New Years celebrations. 

Apologies for the very late wishes for a healthy, fun, contented, creative, and peaceful year ahead. 

Wishing you all that is good!

me, with experimental puppet 'Poilin'
photo by Claire Egan Boyd

Most of the time I write, here, or more likely in my private notebook when there is a lot to process. To figure out. To get my head around. At times I avoid the pen and paper altogether. I go into a void, go into hibernation. Or spend time figuring 'things' out through the more tactile ways of handling clay, or just by looking at the birds, nature, the fire or candles.

Living with M.E. never ceases to amaze me how much of an impact it has on my life. And for a lot of my readers, or their own lives too. I realize I am almost in tears writing this... Almost. As I also see the opportunities that it has given me. 

For the past few months I have spend most of the time at home. Luckily I am content to be in my own environment. The cabin fever did not hit me, as I had plenty of kind friends who visited me, and at times took me out for a short spell into the world beyond. Spent time with students to share my love of 'all things puppet', and stayed in touch with many via social media. 

Grateful to all! Thank you.

During this time of valued (almost) hibernation, I was handed brilliant, amazing opportunities to be part of the real world in months to come.

The absolute, complete contradictions were and are, not lost on me.

Back in November, I received an invitation to speak at the UK Nottingham Trent University on my work on puppetry and disability, during the Nottingham Puppet Festival. 

"Sure! Love to!" 

I was so excited that I nearly packed my bag that very moment. The real moment I was actually recovering on the couch from an hour on my scooter doing some shopping. 

And yet. And yet, I could see, and feel, the absolute possibility of this. That this is a perfect and logical next step in my life lived with illness/disability. My almost 20 year adventure has brought me to this, and I was not going to say no!

When I talked with Sean Myett, I started with "I do come with baggage. I can't travel alone, and I need to travel two days before the talk, and need to stay at least a day after."

"No problem!" 

I figured there was no point in talking in detail about this opportunity and then tell them my needs.

As it happened, this was only the start of it.

Since that day in November, I have also been invited as one of the Keynote speaker at the Broken Puppet 2: A Symposium on Puppetry and Disability Performance in Bath (UK) A  2-day symposium exploring the ways puppetry and disability intersect to produce innovative art forms.

As they are three weeks apart, I looked at the possibility of staying in the UK, and making this a research opportunity. To meet with many other puppeteers. To share experienced with others in the field of puppetry and disability. To visit Puppet Place in Bristol, as Rachel Mc Nally called it, for a knowledge and skills exchange.  Bath Spa University Bath Spa University offered me a guest lecture for their Arts and Social Change Research Group, as well as conducting a workshop with Level 5 Drama undergraduates.

I can not say that I don't worry about this incredible beautiful adventure ahead of me. 

Daily, my mind goes from 'absolutely!', to 'what am I thinking?'.

But I know it is right. 

I know I can do it. With meticulous planning, and having support with me throughout these almost 4 weeks.

How lucky and grateful I am to be invited by these individuals and organisations. To be welcomed into their world. To be taken out of my creative solitude and be among people who speak my other language. The language of puppetry. And filtering in my two decades of life with illness/disability.  To share my creative journey. To higlight the challenges of living with M.E. To bring my previous experience as nurse and social care worker into the package. To share my new puppet designs which are more suited to my ability, not disability.

Life can be strangely beautiful, if not totally confusing!

I know when something is right. My body tells me. My legs tingle.

Also I know when all is well, is when all practical considerations are falling into place. With help, my accessible accommodation has been booked, so are flights and trains. Friends Jane and Marga are spending time with me to 'get me fed, watered, and around the place'. I only have few more support days to fill. Even (most) hotels were helpful in their communications with me. I have been brought shopping to add to my wardrobe. I am thinking and planning ahead, to make this dream come true.

It will. 

Thank you ALL who are making this possible,

and for the support I have alread received. 

(... legs are tingling as I wrote these last few words... )

If you like to support me in this adventure, please buy this pack of ten bookmarks of the Life Outside the Box puppet project, with quotes from their makers. €10 including postage. Every little bit helps! Thank you.

Of course, any purchase from my webshop, will also goes toward my UK - Puppet- trip.