So I still have Stage Four cancer and all that jazz, but I am officially terminating the word ‘terminal’ when describing my condition. It’s got to go.
See. Gone is my original ‘journey of wellness with terminal illness’ blog title, sexy as the paradox sounded and gloriously as it served me in the first year since my diagnosis. Gone is the trouble-maker that trips up my hope when it is skipping down the corridor. And gone is the label that predicts the unpredictable, abducts my future like a sneak thief and carves my ending in stone.
In the early days it was important for me to embrace this word wholeheartedly. At first I couldn’t hear it without blanching or say it out loud. I didn’t want to entertain it or contemplate its implications. I wanted to banish it without justice or mercy. Return to sender. Leave the envelope sealed.
So embracing it was part of my passage from ‘no’ to ‘yes’, denial to acceptance, delusion to reality, terror to grief. Each time I said the word I diluted its power, inch by inch, and slowly reclaimed my own. I began to come to terms with my situation until I could say it easily, have my picture taken under the ‘Terminal 5’ sign at Heathrow airport and flaunt it across the home page of my blog like a banner at a festival. I didn’t give in to it or buckle under its conviction. Quite the opposite. I winded it by wearing it in public and, in so doing, began to breathe again.
As I wrote in my book recently, “Denial is a deeply disempowering force. It rips you from the truth of things and paralyses your capacity to respond. It is a temporary shock absorber, a way to keep your horror and sorrow at arm’s length while you try to compute the mortality cancer makes you face.” So I feel very tender towards my friend ‘terminal’. It took my hand and marched me into the truth of what was happening to me – not my inevitable ending so much as the sobering gravity of my dangerously diseased body and the imperatives it implored me to face. Ironically, it might even have had a small hand in saving my wondrous life.
But now it has to go. It has served its purpose. There comes a time when the labels we wear become the skin we inhabit. Their meanings permeate our consciousness and create narratives we live by. The story becomes the reality. The fiction becomes the fact. My primary purpose on this remarkable ride is to change the narrative – the narrative about cancer, the narrative about dis-ease, the narrative about being a patient, the narrative about vulnerability, the narrative about suffering, the narratives about living and loving and evolving and creating and transforming and marvelling and witnessing and thanking and praying and grieving and dying. The narrative about the awesomeness of human being-ness.
We are all terminal my friends. Terminal is another word for mortal. Such is the human condition. I don’t know my future now that I am feeling unexpectedly well any more than I knew it when I was feeling gravely ill. But I know the power of changing the narrative, of shedding the cloak of unverified conviction, of toppling the cardboard mental constructions that blacken our landscapes, of refusing to believe that what happened to them will happen to me and what happened before will happen again. Of being present only to here, to now, to this.
There is a gossamer line between scaring ourselves and kidding ourselves, between disappearing under reality’s surface and spinning off the top of it. I am floating on it today, skinny arse just below the water line, indefatigable boobs beaming at the skyline and ski-jump nose pointing at the sun. Said nose has been bleeding for a week because the drug I take is shredding its lining. My primary tumour is still nestled in my lung just beneath my right shoulder blade. My next scans are just around the corner. My daughter is doing one-handed cartwheels. My husband has started playing his guitar again. Our puppy is chewing the living room carpet. And my first book is being published exactly a year after my diagnosis. Who ever could have predicted such a thing?
Seems like a fine day to terminate the word ‘terminal’ and give it decent burial.
Thank you for your service.