‘All the Colours of the Dark’

There are things that are hard to articulate about this process of attempting to save one’s own life. The major one is the slip slide of reality. If you can be bothered to read on, this is going to be pretty trippy and you will probably abandon me, dear Reader, thinking I have slipped off the rails. Or lost my grip or some other sort of poor metaphor for losing my shit. I’m writing a book around this blog with the working title of ‘This Might Kill Me: 7 Ways to Save your Own Life or Die Trying’…but I’m trying to think of something snappier like ‘Being Mortal’. It’s intended as a series of short essays that you could read in a waiting room. In it I want to explore all the mental and actual side journeys that terminal illness sends you on. Dare I say it? But attempting to enact every crazy suggestion that is made to me and writing about it is proving quite fun.

I have never had a totally firm grip on reality in the way I imagine other people do. I had a charmed childhood mainly spent in my head, obsessed with the garden and nature or making things. This in itself seemed quite grounded unless observed closely. I’d take flowers and dead bees apart with a scalpel to ‘investigate’ them. I’d spend a lot of time touching the silver birch trees in our garden to see if they were really silver and examining catkins for evidence of their link to cats. Nature, colour and light fascinated me as a dreamy child. I could spend hours watching dust motes swirl in sunlight trying to figure out the pattern. When I was 7 I remember an afternoon burying my face in our black cat’s fur because I could see blues and greens reflecting off the shiny surface of her glossy coat and I thought she must be magic. I recall trying to describe this to a rather unimaginative witch of a teacher who closed down my enchanted vision saying it didn’t really happen.

At the weekend I’d go walking through the woods with my dad. That sounds normal doesn’t it? Actually my job was to be the lookout while he pulled trees up by the roots to pinch them and turn them into bonsais (don’t tell the forestry commission, they’ll probably raid the family bonsai farm to reclaim their wares!) I took my job as lookout seriously, more for fear of the embarrassment if we got caught because my dad would put on a fake Chinese accent and do his whole ‘me no speaky Engrish’ routine when he got caught out by authorities. Particularly traffic wardens. His two perfectly spoken English children knew to keep their mouths shut so as not to ruin his show.

And so I share what I am about to share with some hesitation. Most of you have already come with me on the energy healer journey, you’ve stayed with me through the visions of Chinese ancestors who got me through my wisdom tooth extraction but actually this stuff happens to me all the time. After my last round of cancer treatment something opened that I can’t put back. A bit like when you take magic mushrooms or other psychedelics I imagine. In the intervening six years I lost touch with this ability a bit but the new reality it awakened for me at the time meant a great deal and was part of my healing process. I began to see intense colours when I closed my eyes, so vivid they overwhelmed me summoning such intense feelings. Beauty and awe. I began to think I could sense the distress of people around me very strongly when walking down the street like they were silently calling out to me or sharing their pain or anxiety. I would feel it like noise. I sometimes felt like light was pouring out of my palms like white heat. I’d play a game with my kids in the woods where I would guess where they were by the energy coming out of my hands. To be fair they are crap at keeping quiet but they played along. Delusional? Maybe. But it felt extraordinarily open. An opening up. Not always welcome or comfortable.

It started with the adjunct therapies offered at the BUPA Cromwell. The massage therapist asked me if I saw colours as she was working, really doing reiki not massage. She was like a secret shaman. She asked about the colours and if they were changing. I had a vision of parched cracked earth and they began to change from muddy greeny brown to bright forest green. I noticed that around certain healers and health practitioners this exact tone of intense green would come to me. I suppose you might call it an aura but I started to feel colours coming off other people if I closed my eyes around them. Not seeing it with my eyes but with inner vision. Gentler doctors carried it and I felt reassured around them. They were often the ones who would later spot something in a scan that others hadn’t. A sensitivity. My cancer had been diagnosed about a year after my mum died from breast cancer. I remember thinking it was some sort of joke or mistake and I wanted to say ‘I think you’ll find there’s been a mix up. It’s my mother who had cancer, not me.’ I was still grieving. The rawness and the open wound that comes with losing your mother was a wound that had not healed yet. I was open to anything that brought me closer to answers. Like a very thin veil lay between this world and the next. So thin I might put my hand out and break through it like a cobweb. Maybe this is what loss does. What your mind does to help you cope.

This time is different. I’m less vulnerable and much quicker to adapt to bad news. Shocking news but I can process it as iterative updates now and not think too much about the long term or the existential dread. I feel like a prize fighter who keeps taking body blows. You won’t knock me down for long. I’ll just keep getting up. Hit me again. I think this is the meaning of resilience. Some of the worst news, the broadsides like the random discovery of a congenital heart defect, are almost comic. And I just think ‘I’ll deal with that later when it’s a problem’. It’s not a little problem by any stretch of the imagination as my research tells me it tends to end in major heart surgery. You don’t know about it for 50 years and then the valve starts to crap out and pump blood back the wrong way and and and…Even that level of ‘this might kill me’ I can park for now as it is not a problem that’s right in front of me.

Yesterday I was with the senior oncologist who I have only met once. She is rather formidable and slightly brusque and intimidating. I’m not easily intimidated so I was curious to spend time with her. She is matter of fact and brutally direct but she listens and when I told her my trips to A&E were not just for a funny tummy but total system reactions which put me on my knees she reduced my dose again. I protested that I could handle it but she made the point that health economics mean they have to get my drug and my dose right in the next few months. After that, NICE guidelines dictate !the rules and you can’t change or go backwards. And then in the middle of all the tough talk, she read my notes and she noticed my mother had died of breast cancer. She sort of gasped and became gentle. I said yes she had it 34 years and was the first patient in the UK to have an intrathecal pump. We are old pros at this, my family. That explains a lot she says knowingly. I suddenly got the urge to ask her how she was and said I noticed she’d been off for a few weeks. She said ‘actually my mother died’ . I nodded and said ‘It doesn’t matter how old you are or how ready you think you are, it knocks you off your feet doesn’t it’. And we had a silent moment of acknowledgement of that shared very adult pain. I told her that when she was away the whole waiting room was asking if she was alright and when she’d be back and she welled up a bit. At which point I thought I’d stop poking the bear.

Sometimes now on waking, in that brief wonderful state of not being quite asleep or conscious, I see the most beautiful three dimensional tessellations of swirling shapes in the darkness. All the parts move in every direction at once but fit perfectly, moving in sync. Like an Escher drawing mechanically moving on every axis. Out of this perfectly coordinated dance, letters, shapes, numbers and things appear like flashes or signs. I pay attention to these and look up the dates. Last time it was May 1889. Google tells me this was the start of the Asiatic flu pandemic. I wonder if my ancestors died in it. I see leaf shapes and objects from nature like horticultural diagrams, equations and ancient symbols. I have perhaps gone mad.

At the moment, to cope perhaps, I am allowing all that rawness and wonder back in to avoid being flooded by sorrow. And slowly, slowly I am coaxing the colours return. Finding my way back to tuning into people and energy. I get strong instincts when I should get in touch with people and often find something major has occurred. I feel what is going on with them when I sit quetly with my senses. This is not a vain boast but it makes me curious about our greater potential. Maybe I am just tuning in to the innate ability we all have to hear and sense our fellow humans in a much much deeper and more profound way and to connect to the fibrous web that sustains us. The intense wonder and beauty and awe I feel when these things happens also has the benefit of making me unafraid of death. I think, in a non religious way, it will be an amazing reconnection with what we came from and have always been part of. Of the whole. Modern life is merely a process of separation from this. We have become so scattered and disconnected that we have forgotten who we are and what we are.

I want to share more thoughts on how this inner journey connects with the artistic process but life intrudes and my spidey sense tells me my husband is kind of huffing and puffing because I appear to just be lying around in bed on my phone as usual and not helping unload the dishwasher or put the washing away. 😂. How is he to know I am having profound thoughts? At least, that’s my excuse. C’est la vie. Time for this space cadet to bump back down to earth. Over and out.

NB. the title of this blog is consciously stolen from the rather wonderful book of the same name by Chris Whitaker. Read it. It’s marvellous.