Paralysis – reflection and reminiscence

I feel as if I have been here before.

Over 10 years ago, I heard words which were to rock my world. The landscape around me shifted seismically and everything I thought was certain, was no longer so. In a state of shock and disbelief, I embarked on a path step by step. Tiny step by tiny step. Mostly forwards but not always. A line in the sand had been drawn – when I heard the surgeon say “this is highly suspicious of cancer“.

I remember in those early days following diagnosis, being astounded that the world continued as normal all around me. As I moved through the treatments and procedures my focus was on survival and on moving from one step to another. I became gradually used to the new landscape, and was able to continue to function.

However, I was aware that as I garnered my emotional, physical and psychological strength and resilience, I felt as if life was on pause. I was completely unable to think beyond the immediate, let alone plan. I counted time in increments through treatments, unable to consider making arrangements for what we all think of as social and personal activities. It was like a paralysis, I was cocooned, unable to move.

And the realisation has dawned on me that the emotional space I am in right now, as the pandemic is taking its hold, is uncannily like that space 10 years ago. This is day 22 of self isolation and shielding. I arrived home from work 22 days ago, having agreed that afternoon that I would work from home from then on to reduce risk while travelling to work on busy buses. I picked up a couple of items from the shop on my way home. Excellent stocking up – a jar of red pesto, a small packet of macaroni and some miso soups. I had no idea when I shut the front door, that I would not be leaving again for the foreseeable future. Family conversations that evening were frank and sobering. We talked through the risks that I faced. Age and underlying health conditions meant that I would not fare well if I contracted COVID-19. Additionally, as the pandemic took hold, the health service would be placed under extreme pressure to accommodate very ill patients. We realised at that point that I should immediately self isolate. And so, on Friday 13 March, I closed my doors to the outside world.

In many ways, life continues. The sun rises, it travels across the sky and taking a little longer each day, it sets again. I work from home, hold meetings and discussions online. Life has been transferred predominantly online. I have FaceTime, Zoom and Skype chats in the evening with friends, sometimes in small groups. Our Book Club and Writing Group now meet online. But even though life is continuing, it has been changed irrevocably. We don’t know when it will settle and resume and in particular, we don’t know what the new world will look like when it does settle. 

The aspect which is so difficult to comprehend, is the enormity of this. This is not a personal or localised crisis. This is a crisis for humanity across the globe. And if the most developed and sophisticated health and social support systems are buckling under the pressure, the challenges which the most vulnerable communities face is terrifying.

This is not an individual trauma, we are in a collective state of shock and I believe that we are just at the start.

So again, I find myself in this strange paralysis. This is not a pause where we can make the most of this new “free time”. I am finding that this is a time for adjustment to this new altered reality we find ourselves in. And I am finding that we are responding and reacting in different ways. This is bringing out the very best in many with heart wrenching accounts of kindness and selflessness, and sadly the worst in a small minority.

As I read more and more from fellow cancer veterans, that they are shaken by how much they are reminded of the times of shock when diagnosed, I have been reflecting back on my own diagnosis time. When I look back over my blog posts from those days, I could quite easily do a “find and replace” exercise, replacing “cancer” with COVID19. Back then, I would lurch from fear and anxiety to grim determination to beat this thing (as if I had any choice in the matter). But through it all, I was bathed in this numbing paralysis. And that is how I find these days, and weeks ahead. I can deal with the immediate. Working from my kitchen table, eating from the contents of my fridge and cupboards, household tasks, working out how to get an online shop, being humbled by the kindness of family, friends, colleagues and neighbours dropping off care and food packages, and even birthday cake on my doorstep. But I cannot shake off this sense of being on hold, paused as we are moved forwards through this evolving crisis.

The sense of deja vu prompted me to re-read an old blog post where I had commented on the extent that my world and landscape had been so drastically altered. And this is what I wrote, over 10 years ago:

There are two things which shape the way I see this diagnosis.  Firstly is the fact that life is less about what happens to us, than how we deal with what happens to us.  I can’t change the diagnosis but I am in charge of how I handle what is coming.  So be prepared for inappropriate humour and oodles of feistiness.  The other thing is hard to describe.  Life changes with such a diagnosis, and you can’t go back to what it was before.  From the day I googled galore and realised that there was a real possibility that this was breast cancer, I realised also that there are many things I can no longer take for granted.  All plans change, in fact all plans are cancelled or put on hold.  It is a bit like the sun rising every morning – you know you can rely on it, you know it will come up and some days are sunnier than others and you can see it clearly, some days cloudier but it is light so you know that the sun did rise again.  But imagine if suddenly, one day the sun doesn’t rise.  Everything changes.  Everything fundamental you take for granted, suddenly shifts.  No daylight, no warmth, no growth and the colours all change.  But, after the shock and with human resilience, the will to survive, creativity and technology, ways are developed of dealing with it and life continues.  But it can never be the same, it can never go back to the way it was before.  All right, that is an extreme and dramatic analogy, but there is something about this diagnosis that feels similar to me.

December 2009

And  I realise that I don’t need to shake off this feeling of paralysis. I need to embrace this as my own way of coping through this. It won’t last for ever. This too shall pass. And life will gradually settle. The cancer experience means that I know that it won’t be the same, and it could be very different. And, as long as COVID19 does not take me, then life will gradually resume in its new formhope

And indeed, life does continue. New shoots, buds and flowers are appearing as spring moves forward towards summer. And the sun rises, it travels across the sky taking a little longer each day, and sets again, in preparation for the new day and days to come.

African sunset

The Blog Tourist!

I hate jetlag.  It makes my head fuzzy, my stomach confused, my sleep patterns unpredictable and I feel as if I am walking on cotton wool surfaces for the first days of jetlaggery. I also find it unsettling when I am back in the UK as my cultural references become more and more disconnected the longer I live on the other side of the world.  I think it is even harder for those around me when I am back as what should be familiar is confusing and I forget or do not know things which are routine and mundane to most but a mystery to me.

While I have been challenged by physical and geographical displacement in recent weeks, travelling across the planet and back again and enduring double jetlag, the blog has recently been on its own wanderings and dislocations.  Last week, it had one foot in China, one in the US, one firmly planted here and one spare! It is fortunate that geckoes have four feet!

In late July, just before my own feet trundled through Yangon airport and a variety of departure and arrivals gates, I received a message from my blogging friend Beth on Calling the Shots.  Beth asked me if I would like to join the Blog Tour on writing process.  This was an invitation I was unable to accept unfortunately.  The reason for this was because back in March I had been invited on this Blog Tour by a Yangon blogging friend, Cliff.  This was the same writing process tour and it resulted in a long process of luxuriating and reflecting in my own writing process and a very long post flitting from butterflies and backstories and a great deal in between!

The way the Blog Tour works, if you accept the “baton” is to use the following four questions which prompt reflection and discussion of our writing process:

1) What am I working on?

2) How does my work differ from others of its genre?

3) Why do I write what I do?

4) How does my writing process work?

As well as being a very interesting process, it is also very helpful to step back a little and work through these questions.  And then the deal is to pass the baton on to another blogger or two, or even three.  Now, I am sure there would be no repercussions if you were to take the baton a second time and I am sure that  I could have happily hopped on board again.  However,  having thoroughly enjoyed working through the question prompts at great length the first time round, a second run would undoubtedly have resulted in a very boring post! I declined Beth’s offer but looked forward to reading Beth’s post.

Although I would not be rising to the challenge again, in true butterfly style, my mind wandered off as it tends to do………… I wondered, where the Blog Tour had been and what its journey had been before it reached Beth.  Following my own post, I had followed its path for a few weeks until the various strands became complicated to follow and I found myself unable to keep track of the different directions it had headed in.

I had passed the baton on to Catherine and Marie who both wrote their posts the week after my post, in Australia and Canada. This was fascinating and I was delighted to watch as the baton moved forward.  From their posts, the Blog continued its tour to Audrey in Scotland and Francoise in France. Around the world it continued as a mix of blogging friends and new acquaintances took up the Tour Challenge.  It continued in different directions, and was already becoming hard to track.  I wanted to comment on all posts but I couldn’t quite keep up as it moved on to Jan and Ellen, who in turn sent it off again to Ronnie in Liverpool, and Renn on the other side of the world! In addition to zipping around so many different places, it morphed into different topics, some breast cancery blogs and others not.  But it disappeared from my view and I was left wondering where it had gone, and intrigued to learn.So I was delighted to see the Blog Tour had reached Beth and eagerly followed its path through Beth’s post on Calling the Shots, which directed me to  Booby and the beast, Joanna of Hello mo jo and Ann Marie of Chemobrainfog.

I was fascinated by the Blog Tourist wanderings and I started to try and trace its steps back, naively believing that I might find that it led back to one of the strands I had seen.  So  I started to look backwards, to the post which had introduced Beth and found  My decade of running, and   http://www.corbininthedell.com/  here.  These had travelled  from  Jill Cooks, via Just Biscuits who had accepted the baton from Mademoiselle Gourmande talking about Rhubarb tartlets and a Blog Tour.  I then landed on My simple delights – a blog by a Singaporean who has moved to Spain and i nearly headed off on a tandem (tangents are far less fun 😉 ) on a travelling blog, and when I traced further back was directed me to my part of the world with Life to the Fullest…………………

Indeed, I had been taken back on paths around breast cancer, and then into a world around running, gardening, growing fresh foods for and creative cookery in a whole world of food blogging which I had not know existed eventually even landing on a few blogs from very near my own front door.

The wonderful part of the Blog Tour is that the route is not linear.  If we pass the baton on to more than one bloggerista, then it heads off in so many different directions, multiplying and laughing as it lands in unexpected places. I was no nearer to finding if there was a joining point between my post and Beth’s and I realised that it was probably impossible (or at least very time consuming in a land of limited internet) to find out.

It was a journey which suits my butterfly mind so well.  My attention is taken, I float off in an unexpected direction and am intrigued and excited by what I learn before I tootle off in another direction.  Eventually though, I have to settle back and focus again on the here and now.  But for now, I have a mind which has been infused with a fresh zest and a bundle of treasures which I have newly learned.

lux 8

Thank you, Beth for providing the ticket which took me off on this unexpected journey, especially one which has involved no jet lag!

A simple, timely reminder

A simple, timely reminder

 

Picking heavy steps

towards the gate.

A soul bereft,

eyes blinking rapidly,

dragging threadbare scraps of sorrow.

A heart ambushed

by an unbidden, unexpected memory.

 

How can life

be there

one day,

and not the next?

 

A flutter of softened taffeta

a glimpse of black and yellow

distracts,

catches

the edge of my vision.

 

Flickering,

dusky velveteen wings

tipped with sunshine yellow.

 

A gathering of butterflies

dancing

dithering

flitting leaf to leaf,

amidst rainbow crystals,

glinting droplets,

called to this

butterfly gathering hibiscus bush.

 

Brushing the layers

of crushed cotton pink petals,

their delight

penetrates the moleskin cloak,

veiled around me

designed by grief

woven by mourning.

 

A gathering of butterflies.

Capering

amidst

frayed sunshine

remnants of gladness.

 

A simple

timely

reminder

 

 

Remembering my father, who died one year ago today.

 

A gathering of butterflies

A gathering of butterflies