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

After Words

I was astonished by the level of interest and response to my “thanks, but no thanks” rant last week.  I was in part reassured to know that I am not alone in the physical and emotional space and that these “afters” and “sides” of cancer and its treatment are very real and encroaching.  However, at the same time I was saddened and frustrated that so many of us are struggling.  Often silently, because we do not want to appear ungrateful or to upset family, friends and those around us.

From the outset in this cancer experience I have always reminded myself that there are many things which are not in my control, but many which are.  And how I live the cancer deal is one of those in my control.  I would rather be flippant and feisty, and poke fun at cancer than dwell in the doldrums and feel unhappy with my lot.  It just is what it is and I get on with it.  Mostly.

What came across clearly in the comments and conversations prompted by the rant, was the fact that amidst this weariness, we feel compelled to maintain a positive outlook and we feel guilty when we sometimes want to scream and stamp our feet.  Well perhaps not stamp the feet as they hurt too much!  There was a widely shared sense that we do not allow ourselves to have off days, and times of frustration or anguish.

I have been adjusting to these side effects of these meds for some time, and last week reached the point where I lifted my head out of the sand and realised that the pain and discomfort are such that there are many things which physically I can no longer do.  I have had to acknowledge with some resistance, that the break I have booked for next month will be far more physically challenging than I have prepared myself for and that is beyond frustrating.  This is not about inconvenience, this is about debilitating physical effects which are stopping me doing what I have long taken for granted.   For example, one of the favourite parts of my work, visits to our project sites are increasingly difficult – I used to hop on and off of boats, sit on the floor in villages and walk for days in the Himalayas.  Much of that is now too painful, unsafe or, sadly, beyond my capacity now.

That is when I reached that tipping point and this rant took shape.  I feel better for venting, but nothing of course changes the physical deal, the side effects are still there, and I still have difficulty walking. But it is what it is.  I deal with it. I get on with it and adjust as far as possible.  Mostly with a smile, but sometimes, it just gets too much and I weep.  Not often, but sometimes.

These past weeks have been tough ones, and the prospect of more of the same in terms of side effects feels heavy.  But I do work hard to balance this and make the most of what I DO have, and carpe that diem.

Most days I am incredulous that I have been able to realise my dream and ambition to live and work overseas, in such extraordinary places.  I have now been in Asia for 13 years, and am humbled and moved by the incredible experiences I have been through and the wealth of inspiring and amazing people I have known.  I love my life, and I have no significant regrets.  There are of course a heap of things I still would love to do, sitting in my wish bucket.  But, I have so much to be thankful for and if someone called “time” tomorrow, I would not plead for the chance to do that something I have not managed to get round to.

Even as I sit here, looking out onto the lush garden, the wind whispering in the mango tree, frogs croaking as more rains approach, I still have that sense of naïve wonder and fresh enthusiasm at being in such a place.

However, some days it just takes that extra energy and determination to get on with the day to day, and I find that the reserves have run low and it is just out of reach.

It is what it is.

Sometimes even geckoes have to rant.

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