The root of sorrow is craving, but there is always hope to see the bigger picture

The root of sorrow is craving.

Antony de Mello - Awareness 

potbound Aloe Vera

Three weeks of recovery from the 'hospital-Holland-marathon', and I seem to be finally completing the road to re-connect with the person that I thought was me.  Both the hospital and travel had a rather big impact on my mind. On my beliefs. On my physical, but also mental well being.
I became aware of a sense of loss. I realize that the sorrow, the sense of loss, were based on what I perceive I do not have.

"Ghosts of lives you might have lived ... If not becoming ill ..."

Hilary Mantell. Learning to talk.

I wanted to be like my siblings, who are walking, cycling, working, able to stay up late and rely on their working brain, be sociable, and not having to go to bed at the same time as the 4-years-olds... I became much more aware of my life with illness.  Of course they have their challenges too. Everybody has. I just needed a little time to make sense of it all again. To put 'everything' back into perspective. I needed to hope again. And to see the bigger picture.

"Waiting with a resilience of spirit, in the certain knowledge that, 

if we wait long enough and if we are true to ourselves 

then things will make sense, is waiting in hope."

Sister Stanislaus Kennedy. Gardening the Soul 

The happiest place I could be these past few weeks was in my garden. Touching the earth. Grounding myself. Clearing, re-arranging my garden and my thoughts.

"If we lose touch with our sources, we are in danger of losing hope. 

That is why it is so important to stay close to nature, to listen to the trees and flowers, 

potatoes and hedges, shrubs and bulbs grow in silence.”

Sister Stanislaus Kennedy. Gardening the Soul 

Although yesterday was mainly spend recovering from outstaying the welcome in my garden the day before (weeds are more difficult to remove from gravel than it is from soil... trust me... ) I also had the great fortune to have a lovely meeting with an other creative being.

A creative meeting about possibilities for my work. Where to go from here.
To see the bigger picture of years of creating, and learning. A meeting in which minds were aligned, and experienced support, from a clear, open and honest mind. A chat which gave me hope and direction, and in which I saw my work through someone else's eyes and experiences. It also brought a possible new meaning of the project I have been working on for over a year. I am so glad I did not cancel that meeting because of the challnges of my body that day!

Life-Dance - work in progress

I might not be able to walk much, or cycle, or stay up late, or garden to my heart's content, but I have hope. Hope with a capital H. Which is ultimately linked with Trust.
Trust that all is well. And that I can see the biger picture of my life as it is.

I am grateful to have spend so much time in my garden these past few weeks. To reconnect with nature, with Mother Earth.
And to have taken the time at making sense of own little world again.
To observe what I value most. And... where I don't want to be. And where I can possibly go from here. To have reconnected - even it is just through talking about- and not quite doing- with my creative life.

Grateful to have taken time to reconnect with me again, not just with the capital letters M.E.


I truly hope that you, my dear readers, are well. 
And are finding hope, with a capital H, in your lives.
Thank you so much for your continued interest in my musing.
Be well.

Dog with Bone

This is a slightly edited  email conversation with a young woman who is dealing with the realities of living with M.E. and wants- understandably- recovery.

…. You are such a soldier, you inspire me! Corina I hope u don’t mind me asking but do you hope that u will recover from ME, do u think it might be possible that some day your health could be even partially restored. Or do u believe u will have it for life. What are your rational thoughts? …

… I know I can be annoying sometimes with my questions. My husband said to me only today I was like a dog with a bone going on about raising money for ME research. I have 90 blue ribbons to sell for the month of May. So I know I am obsessed with ME research and the hope of getting well again some day. ... I know you are a straight talker and thinker whereas I am a bit of a dreamer and I get carried away! ...

Dear, dear friend,

…

For years I kept up the hope to buy my beloved bicycle in Holland as I know I would recover. It was the dream. The goal. But as there were so many disappointments along the way, in terms of full recovery, I suppose I stayed more with what is Now rather than what Might Be.

In 2006, seven years after becoming ill, I bought a car again. Driving! Me. After years of only mobility scooter use. Funny enough a friend sent me a picture today of that time.

I was 'well'. I functioned, but still had ME.

I still had a lot of support at home, but I felt a little more part of society again. Even if I only drove a few minutes, a few times a month.

Driving along in my automobile (2006)

In 2012, a few days after my 50th birthday I seems to have picked up another viral infection. I was very ill. And I think menopause has played a part in my not recovering well. (that is a different story all together)

In 2012 I also understood that I might not fully recover. In a strange way it gave me relief. I could stop looking and trying and get back to living. Of course if recovery is possible some day. Great! But research is not there yet. And even if it was, we are all so different in our experience and symptoms.

(I sold my car again as it had been more a symbol what I could not do, and not a symbol of independence.)

I actually ended up doing a night class in Disability studies that year. It almost 'killed' me, but it set me up on a new road. Understanding long terms illness and disability from a much wider perspective. I wrote Into the Light as a result. As a result of not recovering and as a result of the year in college.

So, do I hope I recover? Yes. With emphasis on hope.

Do I think I recover? No.

But I will keep looking after my physical and mental wellbeing. Meditation. Easy movement. Joy. Good people around.

What is recovery anyway?

I am happy. 

I have my days of misery. But they usually come from wanting things I can not have. Or comparing myself with someone else. Or some else's life.

While I was writing to you a friend who is a chiropractic practitioner stopped by with a book. The Way of Healing, by Chi Kung. There are some extremely gentle exercises in the book to restore energy. Some are even just lying down with your hands on your belly. It is wonderfully simple. Here is a video link he gave me with sitting exercises. 

I will explore these kind of methods to enhance my life.

And, in terms of my bicycle. Well, who knows. It won't be today. It won't be next week. So in the meantime I am not using my precious energy to achieve that.

I don't know if that answered your question...

There are many, many thoughts on the subject...

I know you want recovery. Understandable. But please my dear friend, for your health, and the support around you, let go of that Bone! Research will happen without you looking at it. The magic will unfold some day. In the meantime. Live. Live the best life you can, with the people who love you around you. 

Stop researching the research ... it will come to you.

I promise. Healing will come to you. But maybe not in the way you expect it.

Let it happen.

Give the Bone to someone else.

Much love!

Your travel companion - Corina

PS, if you have a few words about your experience, I love to read them.

 ... 

Corina thank you for your lovely answer. I could honestly read your words all day. Thank you.

I would write something Corina but it would take me at least a week to get it together, loss and hope would be my theme. Plenty to write on that. I had let go of constantly researching the research a while ago, there was nothing left!!! 

I have signed up to Health Rising and Open Medicine, so if there are any updates they will come through to my email. I totally get living in the now, appreciating what I have. I do but at times I get lost in worry, grief and 'what will happen'. And get into a tizzy as u well know!!!

I have to hold onto hope though so I have to see that bone now and again, just not obsessively. I believe answers will come in time but as to when that will be, nobody knows, that part is hard to swallow. 

Not knowing. I compare it to jail, if you knew when u were getting out or getting sent to a prison with more concessions and freedom, it would make the hard days easier. 

I trust in God too that he will take care of me. 

I believe too that all the ME sufferers worldwide rightfully deserve treatment, it is a disgrace that so many have been left abandoned for so long, especially the severe cases. Funding is necessary. That is why I will sell my 90 ribbons no matter what, I will do fundraisers, not just for me but for those that cant fund raise. I will do what I can, that's all I can do.

Gosh I have written loads, I should be able to do a piece for you, once I start I am off!! Thanks for giving me the opportunity.

xxx

To see the bigger picture

There is always hope.

But it is acceptance that gives me peace, and reminds me of the Bigger Picture.

Morning thoughts.

When I come here to Dzogchen Beara, to the Care Centre, I have the secret hope to experience healing. Physical recovery. To find that one as yet unexplained nugget of information which complete my recovery. Which makes it possible to walk further than a few minutes. Which makes it possible to go a day without pain. To dance. Which makes it possible to have a brain which stays alert and able to communicate for 'normal lengths of time'. To create my sculptures to my hearts content. To write as much as I like. When I like.

What I find however is that acceptance of my reality is what gives me peace. And Hope.

Hope with the Capital H.
Hope to see the bigger picture.

Being so close to nature, my great guide, and being close to my inner being through silence, meditation, writing and creativity, I can see the bigger picture more clearly again.

I won't as yet dance with my body. A pain free body. But my mind is free. My mind is free to dance with the wind. To cry with the rain. To start life afresh with each dawn. To be the light on the ever changing reflection on the ocean. To share the warmth of beautiful simple moments with people I only meet for a short period of time.

Last night I spend a little time with a nun from Korea while having a cup of tea in the kitchen. One of the things she told me is that she contracted polio as a one year old. Her colleagues and family are worried for her, that she can't travel and function well. We had this 'Yes we can' moment. We shared the Bigger Picture of Hope. Of resilience.

We talked about religion. About Buddhism, Catholicism. And nature as a guide. (I wondered is there an -ism for nature. For Mother Nature. For Gaia. Gaia-ism?)
I told her how I pick and choose elements of all religions-and-none to make my life whole.

I value those little moments of time possibly more than being able to function fully as a 'normal' human being. 'Fully' as in, being completely recovered.
Maybe, just maybe, I would not experience these minutes of wisdom, of sharing, of understanding as I would be out running, walking, driving, being busy... busy with that life we think we all want or need.

I have good life.
I have a beautiful life.
I just forget sometimes to see the bigger picture.

Hope: Finding courage within the weakness

Quote from
Into the Light by Corina Duyn

Keeping the thoughts on Hope. And Trust. And finding the space in one's head for the beautiful and the challenging...

It always takes me a while to be brave enough to listen back to my own words spoken during an interview or talk ... But today I finally found this courage and the head-space to listen to podcast of the interview, or more precisely, a leisurely talk, recorded on the 24th November with Bernadette and Stan Philips on 'World in View' -Tramore Community Radio.
See MixCloud link at bottom of page.

The chat was a beautiful exchange of thoughts about art, life, illness, disability, nature, (Zen) poetry, ability, boxes and getting out of them, eggs, presence, puppets, the importance of Fun, strength, transition into disability, new beginnings, and changing attitudes...

The chat flowed freely and I think we could have chatted for a lot longer, given the time. The view of the sea from this radio station made it all the more special.

Towards the end Bernadette read out a quote from my Into the Light  book-  about finding yourself in those moments where you know what you are doing is exactly right for you... and thoughts about Hope. (see quote in image).
... Hope with the capital H, where one sees the bigger picture of one's role in life - I was told, and I can see it now, that yes, I have found that place of Trust - of knowing my role in this world of illness and disability, and being an advocate about Ability.

The experience of the Dis-ability ... This Ability exhibition has - for me personally- been an experience of growth. Thank you Grace O'Sullivan for your words at the opening talk, and Bernadette and Stan for the amazing and easy chat, for helping me to Trust. 
I will endeavour to remind myself of this in times when I am a bit 'rattled' by circumstances, and unsure on how to handle them.

One such challenge came a week after the radio chat.

...  a display in disarray.

When I arrived at the Cultural centre to pack up the exhibition on the 1st December I was rather shocked (to say it mildly) by the state of the show. The exhibition had changed from an exhibit of 'stories' to what looked like a badly organised store-room.

I became aware that the puppets and tables with our books had been moved to accommodate a gig on Friday 25th.
Which is fine...
But...
Although the puppets were returned to their previous location, they seemed to have been handled in an unkindly and thoughtless manner. They were thrown into, or on, their boxes.  The tables with books, prints etc were left in the back of the gallery. Open boxes with plastic wrapping flowing out of them on the floor where our book displays had been.

Seeing our exhibition in this way made me so incredibly sad. And I am embarrassed that people who came to see the exhibition, which had received such great publicity and kindness, would have seen a place in disarray.

For the past week I have tried hard to make sense of it all. To not let this strange event blithe the overall beautiful, positive and empowering experience.
To keep seeing the Bigger Picture.
To Trust.
Trust that all is well.
To still see the Hope with the Capital H. To find my courage within this weakness. Or perhaps also seeing someone else's weakness in their inability to see that, for the last 5 days of the exhibition, that there was something seriously wrong with the display...

After writing to the art centre, I have received an apology, and am assured that this will never happen again, and that they can learn from the experience.


I suppose the most challenging to get my head around was (is) that the whole point of the exhibition was  about Ability - about stepping out of boxes - and yet this exhibition ending had a visual aspect of being thrown in the boxes again.
I know this was not a deliberate act, but an unfortunate result.

To finish on a lighter note... two of the puppets - my own: The Reporter, and Miriam's Monk had their string completely entangled. An interesting side effect.

Reporting and Mindfulness all tangled up.

Seeing the bigger picture.

Trust and Hope.
Finding Courage within the weakness.



Thank you to all of you who have visited the exhibition, who have encouraged me through social media, through email, messages and phonecalls. For practical support and for believing in the thoughts behind this exhibition. My deepest gratitude.

Now, please make yourself a cup of tea and join us for a chat!

My interview proper starts at about 9.30 minutes in, but if you have the time, please listen to the whole program as it is all related and interesting.

Links:

My books mentioned in the interview.

Talk by Grace O'Sullivan