On the Couch 7
Borrowed time
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Dear friends
This time around, I’m putting myself on the couch so that I can invite you all to contribute your reflections as well as your experiences – if you have experience of these issues I’m writing about. At our most recent Myth & Fairy Tale Salon, and during a conversation about grief in the context of the beautiful old Irish story of Mis and Dubh Ruis, the very lovely Patricia (who always gets right to the heart of an issue) asked me whether my own experience of almost-death back in 2021 had changed me. I did my best to answer in the session, but the question itself was revelatory and I’ve been thinking about it ever since. (Spoiler alert: yes!) And so I wanted to offer some additional responses here, and then to invite you all to share your thoughts and (please) your wisdom.
A note to those of you who’ve read Hagitude and are already familiar with this part of my story: do skip the next three paragraphs and head on down to the new stuff.
In early 2020, we had an especially stressful time as the COVID pandemic began to gather speed around the world, because we were just about to complete a lengthy process of relocation back to Britain from Ireland. It looked for a while as if we wouldn’t make it and might be stranded, with four dogs and a cat, in between homes (with the old house sold but the new purchase not yet completed) and at a time when all transactions had been halted and it was suddenly forbidden to view property in order to buy or rent it. Well, we made it by the skin of our teeth, leaving a trail of gibbering solicitors, estate agents and sellers behind us. We arrived in an unfamiliar and decidedly shambolic old house in Wales on the first day of the first complete lockdown. Albeit with only what we had in the car (mostly dogs!) without a scrap of furniture, clothes or other necessary possessions for the next six weeks, because just as we arrived, the movers decided they weren’t allowed to deliver to us the things they’d just picked up from Ireland. I’m a neuroscientist and psychologist, and I know very well that this period of intense stress, along with some really shocking unpleasantness around a couple of events I’d had to cancel because of the legal restrictions on travel and gatherings that were rapidly imposed, precipitated the sudden-onset, debilitating inflammatory arthritis which left me hardly able to walk or to use my hands with wrist supports for several months.
You’ll remember how it was at the beginning of the pandemic. I couldn’t see a doctor; the NHS was swamped; anyone with any kind of medical condition felt frightened and alone – and it’s become increasingly clear since that many died as a consequence. A couple of months after we’d moved I noticed a small lump on the side of my neck; the lump continued to grow. I was told not to worry, it was just a swollen lymph node. It still continued to grow and medical professionals still continued to say ‘Whatever’. Eventually, several months later and unable to get anyone in the NHS to take what was happening seriously, and after the world had opened up just a tiny bit so that such things were now possible again, I decided to take matters into my own hands, raid my savings and pay for a set of private scans. To cut a long story short, it turned out not to be a swollen lymph node, but (by now) stage two diffuse large B-cell non-Hodgkin lymphoma – one of the most aggressive (but happily most treatable) blood cancers. I was told that if it hadn’t been diagnosed when it was, it would rapidly have become untreatable and I would have died within four to six months.
Thanks to the angels at Bronglais Hospital in Aberystwyth, chemotherapy began just two weeks later. It was, I was warned, a particularly intensive and brutal chemotherapy regime, since surgery in systemic cancers like this one clearly isn’t an option. The treatment would last (assuming that my body held up; often they don’t) for almost six months, during which time all my hair would fall out and I would be facing a smorgasbord of damage and debilitating side effects, some of them lifelong. If I were lucky, the consultant calmly announced, I might just get through the six months without having to be admitted to hospital with some potentially lethal infection or other, due to the systematic demolition of my immune system by the potent cytotoxic drugs they’d be pouring into my bloodstream. But most people weren’t lucky. I would be tested for COVID three days before every chemotherapy session and if I had COVID I wouldn’t be able to go for treatment, so I mustn’t catch COVID because I really, really needed this treatment.
Reader, the short version of this story is that although I can testify with all my heart that not a scrap of it was edifying and that most of it was terrifying, I was in the end extremely lucky. I responded quickly to the treatment and made it through without landing in hospital with an infection or bone marrow meltdown, without getting COVID, and without any of the debilitating lasting side effects that had been predicted. I’ve been in full remission for four years. I still have a dodgy immune system and a shiny new autoimmune disease as a sort of consolation prize, but I’m aware that it looks from the outside as if I’ve just taken it all in my stride, picked up and carried on where I left off. That’s what I do; it’s what I’ve always done.
Nevertheless, it’s taken me that full four years to understand the effect the experience has had on me. And now I’m fascinated to know how those of you with similar stories to tell, as well as those who feel as if you’re now in the very final stages of life, experience the texture of your everyday and navigate your life while living in close companionship with Death. I’ve spoken and written from time to time about the necessity of befriending Death. But like all deep and true friendships, it has consequences and it creates change. And so I’d like to share with you some brief reflections on the consequences it’s brought for me, and to pose one or two questions that are almost certainly unanswerable – and then turn the floor over to you.
N.B. This is not going to be one of those posts in which I try to persuade you all that I have some deep insight into the meaning of life. It’s rather more rambling and very much more ‘WTF???’ than that!
1. For clarity, I wasn’t ever afraid of dying, even though dying at 60 would certainly have pissed me off. Indeed, it seemed inevitable, for a while after diagnosis, that the lymphoma was going to kill me. Dying isn’t my problem; cliché alert: it’s going to happen one day! My question is how you live when dying is very present in your life. I know a lot of great writers and philosophers have written about this, and I know that a lot of others on the verge of death have written about what it is to be on the verge of death. I’m not on the verge of death any more (as far as I know!) and I’m not pretending to have anything hugely original to say. But there are some things that, no matter how well addressed they’ve been by others, you have to work through for yourself. I guess that’s what I’m trying to do here; thank you all for humouring me.