I’ve been mulling over how to tackle this piece for some time now. Procrastination has been easy and finding excuses not to start writing has afforded me some distance from the intensity of feelings that I was experiencing when the notion of writing first appeared in my thoughts.
And then, one evening, at a small gathering of friends over supper, I was entertained/enthralled/appalled (in equal measure) to hear the views espoused by one of the guests (a new acquaintance) who talked at length and with great enthusiasm, about his very real intention to have his head cryogenically preserved immediately after his death, to upload the contents of his brain to some future supercomputer or AI system.
When I asked him ‘why?’ he couldn’t believe that everyone wouldn’t want to live forever in this way – if they could. (This currently costs £100K, so not exactly accessible to all!) He was also hugely animated and excited at the prospect of advances in medicine that would prevent ageing, rid the world of chronic disease and prolong the human lifespan by many decades.
I found myself wanting to mention minor details like the climate change emergency and looming nuclear war but that felt a bit churlish so I just listened. in that space, I found myself wondering why we humans can’t seem to help ourselves becoming attached to just about anything and everything. The idea of loss, leaving, giving something up or surrendering is often an anathema to us and yet, in so many philosophies and faith traditions, the ability to do just that, let go and simply be, is the key to bliss, to heaven on earth, to enlightenment.
My personal journey with loss is a constantly evolving one and I have come to regard loss as part of the ebb and flow of life; a process that bestows as much as it takes. This insight doesn’t make it any less painful but somehow easier to live with. I have learned that there can be layers of loss – from the catastrophic and life-changing, through the intensely personal landscape of relationships and love, to the shared sense of loss of control that (for me) came with the global pandemic.
My own experience of life-changing loss came with me being diagnosed with a rare autoimmune disease at 51 after months of increasingly failing health. I was shocked at how quickly my body could go from being strong and resilient (able to run marathons, take on endurance races, scuba dive, look after a family and hold down a high octane career) to hardly being able to get out of bed each day and struggling to walk down the road. There was a strong sense of relief when the diagnosis (vasculitis) was eventually made and I finally had a recognised label rather than a troublesome set of symptoms. Surprisingly (to me), being acutely ill was the easy part. I have a background in nursing and I know how the system works, what good medical care is capable of achieving and that advances in science usually mean that what is tricky to treat now may well be mainstream within a decade.
And so it was. I adopted a project management approach to making myself as well as I could be whilst getting to grips with living with a long-term condition. I negotiated a change of work, moving into a part-time role facilitating the development of an education strategy and coaching the teams that would deliver it – pretty much all of it doable from my bedroom office via WebEx (this was pre-pandemic, pre-zoom).
I spent the next ten years surfing the waves of being well and on top of things, dealing with the impact the condition was having on myself and my family and friends (they too had to learn the new normal, they had lost the old Nadia, the woman with never-ending energy and they had to get to know the new, slower, tamed version) and coping with bouts of severe relapse caused by minor infections.
I was hospitalised with sepsis three times and each time I focused on what had worked before: rest, diet, building mental resilience, some work, some exercise and being with my family. After the third episode of sepsis (I nearly died this time) I decided to take the early retirement option that came with my NHS pension and I started to do some occasional teaching with my local university on the nursing degree programme.
I used myself as a living case study to illustrate the journey of someone with a long-term condition. I hadn’t anticipated how much I would learn from this experience and, at the same time, how painful it would be to regularly revisit my recent past and relive the feelings of loss that accompanied the changes in my life. I often found that I came away from one of my lectures exhausted, pulse racing, heart-thumping, needing to find a quiet place to decompress and let the sense of panic inside me recede enough for me to be able to drive home. I suspected that I may have PTSD and I decided to stop working altogether. It was such a huge relief.
When the pandemic hit, I had already spent several months in wind-down mode – dog walking, baking, gardening and visiting my family and grandson as often as possible. I loved this new way of being. I felt relaxed and able to breathe. My health was (relatively) good, and I felt fit, certainly fit enough to take on lockdown. And then I found myself waking in the middle of the night with an overwhelming sense of impending doom and loss of control.
It didn’t matter how well I looked after myself, if I caught this virus I would at best lose my kidneys (vasculitis having caused chronic kidney disease) and at worst not survive at all. The sense of loss was immense and engulfed me (it makes me tearful to remember it). Suddenly the things I had taken for granted were no longer certain, medicine and science were struggling to deal with the unknown, we couldn’t go to see our family and simple pleasures like sharing a meal with friends or going to the cinema simply ceased to be.
I had to find an anchor, something to help me recalibrate and gain some much-needed perspective. This came in the form of sea swimming and practising gratitude. The sea swimming was easy, a no brainer for me. It gave me the chance to be outdoors in nature with one close friend and to simply be. In that being, my mind started to be still and a space opened up in which I could see things to be grateful for – and there were many. I didn’t beat myself up for having felt such a sense of loss, I acknowledged it and was grateful to be able to feel it and still be safe, housed, warm and well-fed and not be suffering financially.
I realised how lucky I was, I am, I have been and how much harder life is for so many people. This isn’t to say that if you’re fortunate you somehow give up the right to feel the pain of loss. It isn’t a competition. Each of us will experience the impact of loss during our lives, whatever our circumstances. I believe that our ability to navigate loss is not necessarily dictated by those circumstances. It is more to do with learning to surrender and, in doing so, becoming aware of some innate wisdom that is hidden in plain sight – the wisdom of the annual cycle of nature; the dying down and wintering in order to rebuild and rebirth in spring and grow in summer through to harvest; the wisdom of your body, especially your gut – when it is telling you to stop. Even if you just stop for a bit it makes a difference. I became aware of the wisdom in rediscovering old joys and discovering new ones – who knew that there is so much to see on a walk to the shops or a busy commute.
My most recent relapse has taken me down some deep holes and involved another layer of loss because it coincided with a family trauma. I have done my best to hone my navigational skills and to learn some new ones. I have found myself drawn to and interested in the power of prayer and incantation, I have gained huge comfort from practising the universal loving-kindness meditation and I have surrendered to the process of a new treatment regime and the possibility of needing a kidney transplant in the not too distant future. I have learned that I will never really know what ‘living with covid’ is actually supposed to mean for someone like me.
Each layer of loss has bought with it a new gain, and so it goes. I tend my garden, I write, I walk much more than I run and I am still swimming.
The link to the Universal Loving Kindness meditation