Retreat

... from Latin retrahere ‘pull back’ 

For the past few days

I had the great need, 

to retreat 

from the world.

To clear space

in my mind.

I found solace

in my front garden

Connecting with the earth

clearing weeds

cutting back

making space.

A few minutes at the time.

Taking plenty of time

to watch the snails 'moving house'

as I unintentionally 

disrupted their world.

My apologies.

Today, I was grateful

to connect
with the earth
when a bizarre telephone conversation
with a hospital staff member
brought my sanity

into question.

Sitting on my small crate

under the apple trees

pulling weeds

brought my mind back to

trusting my own thoughts.

Nature is healing.

Thank you for your kindness

We may decide that a puma is worth more to us than a caterpillar, 

but surely we can agree that the habitat is all the better for being able to sustain each.

Stephen Fry - The Fry Chronicles

A big thank you to my readers far and wide who responded with such kindness towards yesterday's post, about making sense of living life with illness.
You responded with sharing your own stories and experiences, which I know will be of support to many others.

"... Since I came to accept my condition (accepting doesn't mean I'm happy with it!), kinda made 'friends' with it, seeing it as a part of me (not 'me'), I feel much more content and can actually enjoy life within all my limitations..."

So many of you responded on my Facebook page, via personal messages and emails.

Thank you all, for keeping me and others who live with their own challenges, in your hearts and minds.

Also thank you for helping me to see again that perhaps my life is not as 'bizarre' as I thought it was/is. My life is just different.

"You are a true artist, and in remaining true to yourself and your art and what you create from your own intimate self you are then whole as a person as a spiritual and human being..."


There is little point in comparing my life with those living in a different world. I just got a little confused for the past while.

I leave you with some words I wrote in my Into the Light book, which also has the above quote by Stephen Fry in it.
We are all different, thank goodness for that...

Be well my friends, and thank you again for your company and opening your hearts.



my words on the page from Into the Light read:

Bodies come in all shapes colours and sizes
White bodies and black Tall bodies and little ones Female, and male Healthy ones and ill ones
The right body and the other

Throughout the history of western civilization emphasis has been placed on achieving the perfect body 
Great value is put on physical ability

We are all different thank goodness
What a boring world we would have if we were all perfect Whatever that might be 

Making sense of life with illness

... 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

I thought I felt challenged these past few days because of the reality of pain and pretty extreme fatigue as aftermath from my marathon weeks of hospital and travel. But there is something else at play. 

I read this question on facebook yesterday from another person living with M.E.: [abstract] ... I am thinking a lot about purpose and meaning at the moment, especially because I am feeling unmotivated, depressed and *useless*.
While writing a response, I realised why I feel vulnerable at the moment: I am out of my comfort zone and realised how bizarre my life really is, in terms of the "norm".

stepping into the real world

Having had my 'toe in the real world' during the Holland adventures, seemed to have unsettled me. A world in which I am surrounded by people who live normal lives. Who have jobs, family, kids, and go about their activities at will. (most likely a generalization, and not always true, but that is what is looks and feels like from my point of view.)

Maybe, I find it easier to stay in my own created world. 
A world that I understand and can function in. If that makes sense. 
No, it is not what I have hoped for in my life, but within my life with illness I have created a good life. I do truly believe that. 

These views are just a little askew at the moment. 
I have to find ways to find my own life again. To reconnect with my creativity, my garden, and my writing. To start doing things a few minutes at the time again, to reestablish a routine.

But also to give myself the time to feel what is really feels like to live with a body which does not conform. A body which is painful, and has many demands. To look at how I have a tendency to look at the good things, and to laugh away something that in all honesty is not funny at all. 

My dear friend Chris, whom I had the pleasure of spending a few days with in Holland, mentioned this too, during our last night's dinner. I asked her at the time 'not to go there, as I would start to cry.'

My animation project cocoon.
Nothing is a coincidence

So it really is important to now, in the comfort of my own home, in my own cocoon, to truly look at this. And to look at what the family reunion, and the making of Snapshots, means for me. 
Nothing is a coincidence...

Life. Creativity. Writing. Meeting people. 
Nothing is a coincidence...

Be well my dear friends, and I gladly hear or read your own thoughts on vulnerability, and how you finds ways to make sense of it all.

Fragile

Today I aspire to be like the fragile, and yet strong poppy flower

poppy flower

While I try to hang on to those amazing moments of my trip to my country of birth, there are so many thoughts swirling through my painful and tired body. Too many to relate in the one post. 

While I re-arrange them into order in my head, and make sense of them all, the one overriding word for today is: 

FRAGILE: 

(of a person) not strong or sturdy; delicate and vulnerable.

Synonyms: weak, delicate, frail, debilitated, shaky, ill, unwell, ailing, poorly, infirm, feeble...

Origin: late 15th century (in the sense ‘morally weak’): from Latin fragilis, from frangere ‘to break’. The sense ‘liable to break’ dates from the mid 16th century. (and an interesting graft of the use of the word Fragile over time - became popular since the 60's)

Taking back the power

This morning I decided to stay in bed for a while and watch a movie. Sunday morning luxury.

In the movie there was a scene in an airport, where travellers were transported on the airport-caddy.

I thought "That is me." I am that kind of person. "old", or "disabled".

It shook me.

I got upset.

I don't get upset that easily... What is going on?

Later on, I spoke to my wise friend Dolores. 

She asked about my week in hospital. I told her of the beautiful moments, and the more challenging. (see post of the past 5 days - if you like to read them.)

This is the jest of what we talked about:

When you are called into hospital, it is a kind of contract. The stay has a purpose. It did not work. This lack of fulfilling the 'contract' can be compared to a betraying of trust.

Through the experience of the positive but challenging detailed probing into my symptoms by the physiotherapist, the waiting for MRI, the not talking with the neurologist before heading home (as tests were not completed), they robbed me of my power.

It left me vulnerable.

I think I am pretty good at managing my illness. How to deal with it on a day to day basis. How to work around the symptoms. How to work with the symptoms. How to make my day- my life- good. Maybe it is a brilliant case of sticking my head in the sand (or in my garden and my art and writing). I am well. I live well.

But being in hospital and being subjected to an ill-system makes me upset.

I go in happy and with an open mind. And come out upset, with a frazzled mind.

So, today, I am going to take back the power, as I have a busy few weeks ahead of me. 

My journey to Holland starts tomorrow with a trip to the airport hotel. And then a Very Early start on Tuesday.

I will try to stay in touch here on my blog. ... if there is anyone who can tell me how to add images to the blog if writing on the iPad, please, please let me know!

Taking back the power started with a walk around me garden. And I like to ask you to join me.

Much love

Corina

Taking back the power

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.