More myself for being less myself
Sophie and Gabriella, 2015
Having had radiotherapy to my fifth round of brain tumours in September 2020, I have now received my latest scan results. I could just share the facts with you but want to be open about the complexities and related challenges – for which I seek understanding not sympathy.
I still have four brain tumours. Three are the same size as they were in the previous scan and one has shrunk a small amount. This means the cancer is ‘stable’. And stable rocks if you are walking in my shoes. I am always grateful for another day of life, especially as I hear about people dying of the exact same cancer that I have. It is sobering and humbling and heart breaking every time.
Equally and as importantly, this is also my reality…
I’ve had 60-70 brain tumours in the past six years, maybe more, as well as three rounds of targeted radiotherapy to my brain, which is also bathed in a very high dose of the cancer drug I take daily. In addition I’ve had brain surgery and leptomeningeal disease (when cancer enters the fluid pathways) twice. I’m told my level of functioning is remarkable given the damage all this has done to my beautiful brain.
But damaged it is. I lose details and memories and promises I’ve made. Sometimes John tells me stories of ‘that-time-when-we’ and I simply can’t recall them. I miss messages. I write a lot of lists to remember things I need to do. I don’t reply to all emails because I can’t keep up with them. Instead, I do my best to discern the priorities and respond to those. I need support for simple, practical things like tidying my room and making a healthy meal. I have become fragile.
Yet there is a silver thread of amazing grace running through all of this. I continue to retain these parts of myself:
The wisdoms I have gathered down the years and my ability to see what others cannot see in themselves, often the one thing that will shift many things in their lives.
Access to my innate creativity, especially in crisis situations, and to the creativity that flows through me from Source.
My eloquence and ability to articulate what many people experience but are unable or too afraid to say.
My generosity of spirit and determination to play my part in creating a truly inheritable world for future generations.
In other words, I retain my essence, my capacity for service and the gifts that make life worth living when part of me wants to let go.
I am wonder-full, but I am not Wonder Woman. Sometimes people expect me to function entirely normally and become judgy or impatient when I don’t. Much more is sought from than offered to me, which is not a whine. I get it. To whom much is given much is asked. I am simply seeking awareness of my true limits as well as my gifts.
If I don’t respond to a message or forget you in any way, it is not personal. I am human. I have my own fears to transform on a regular basis. Uncertainty is my normal. I experience self-doubt, sadness, depression sometimes. I am ready for bed at 8pm. I may forget your name or where I met you. I live with a disease that continually reminds me of my humanity and teaches me humility - part of which is self-forgiveness when I miss the mark. This is one of its great gifts - which doesn’t mean it isn’t hard.
At the start of this year, I was asked to create a digital programme for a major brand that wants to support its customers through this challenging time (deets to follow in March). With a bow to one of Glennon Doyle’s mantras, the course is called, “You Can Do Hard Things”. I was perfectly qualified to teach it and it was my privilege so to do. Because I CAN do hard things. I am doing hard things. And while I am very agile at releasing the ways we make those things unnecessarily harder than they need to be, they really are hard sometimes. We are all facing hard things at this time and we can do them dear ones. This is how we evolve.
I think I just wanted to share a few of my hard things today. Somehow, I am more myself for being less myself. I will continue creating as long as I have breath in my body and the capacity to find the possible in the impossible. This is my art. Today I bow to myself from the waist for that artistry while being transparent about my frailties, which I’m told I don’t make it easy for people to see. I assume they are obvious.
A couple of days after my recent scans I was being really snappy with my 10-year-old dyslexic daughter. After a while she stopped me, placed her hand on my heart and said, “Mummy, take a deep breath. You are scared about your brain scan and you’re taking it out on me. Me and Dad are scared too. We prayed for you last night. Let’s just wait to see what happens”. My state shifted in seconds.
Just yesterday, she had been hounding me to give her a water bottle for a game, but I kept telling her to wait until I had drunk all the water. Before long, I cratered and said in a resigned voice, “Oh go on then, take it”.
“No,” she responded instantly. “I don’t want to win that way”.
And my favourite? “Mummy, when I lie my heart hurts at night.”
She will never be benchmarked or given a GCSE for this brilliance, this light, this ability to see beneath the surface.
As an only child with learning differences, she is also doing hard things. Academic expectations weigh heavy on her shoulders along with the government’s obsession with kids ‘catching up’. There is even a ‘Catch Up Tsar’ for this agenda ffs. Meantime, this remarkable chapter in history, which our children have a profound need to understand, is being missed. They will be the keepers of COVID19 stories for decades to come. This is a time to help them express their own experiences through whatever medium brings them alive - dancing themselves out of anguish, painting their bewilderment at not be allowed to hug Granny, singing their wonder when the sky groans just before a deluge of rain thunders on the windows, cartwheeling through a plane-free silence that soothes their bones, writing words that roar with laughter, pulling sorrow out of clay and shaping it into hope.
Sometimes I can’t sleep for worrying about how Gabriella will stay herself in world that wasn’t designed for one such as she. Then she sees beneath the surface again. She tells mum why Dad is upset and Dad why mum is upset, then orders us to ‘hug and make up’. In these moments my worries dissolve, and my own hard things become bearable again. I unhook myself from all the fear that runs the world so much of the time, that clings to ‘normality’ even as our norms topple like dominoes because maybe, just maybe, they don’t serve us anymore. I remember that one of cancer’s gifts to me is the knowledge that going back to ‘normal’, to my life before it came, is one of the worst mistakes I could make – even if I got my memories back and didn’t need to write longs lists every day. Perhaps this is a lesson we could all learn at this time.