Writing is my life-line

Part one: navigating illness with words | honouring the brain tumour community

kunanyi / Mount Wellington on the tenth anniversary of my diagnosis

Welcome to a very special edition of Wild and Wonderful.

May is Brain Tumour Awareness Month¹ here in Australia (and also New Zealand, Canada, and United States). Today, I am honouring those living with a brain tumour, their loved ones and carers, by sharing a little of my story.

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Writing is my life-line

I’m not yet comfortable with the word survivor, its soft slur announcing the return of my life.² It feels too brash, when nothing here is evermore. And besides, I don’t want to declare a victory, hang a medal around my neck, say the battle is over, my wounds are healed. That’s too neat, for a life.

But what other words do I have? Girl who had a brain tumour, or girl with a special head? Now I like that one (who wouldn’t want to be special?).

And besides, it was all so long ago — the headaches and dizziness, collapsing in the hallway, brain scan, surgery, and treatment.

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When I was ill I kept a diary. I wrote a little everyday in a red leather-bound notebook. My writing was large and scrawly in the beginning, like a child’s hand — my pen running away from my mind.

I remember it being hard to focus on the unlined pages. A complication of my brain surgery was double vision. I wore an eye patch, swapping it between my eyes during the day.

Diary writing with my kitten Snowball

Sometimes I wrote about what was worrying me, and other times a dot by dot account of what I ate through the night —

12th February 2013

I woke feeling so weak and hungry I couldn’t go back to sleep. I chewed on my white bed sheet, thinking it was a piece of toast.

Such was the joy of living under a ‘dex haze’ — the unwanted side effects of a steroid prescribed to relieve the swelling in my brain.³ The adjectives unhinged, hungry, and irrational come to mind. I wonder what my husband remembers, or perhaps I shouldn’t ask?

Sometimes I wrote postcards and letters to friends. And they would reply with quirky cards and stickers left over from our traveling days. I remember running my fingers over the envelopes, feeling the grooves and bumps on the paper like braille, their words hanging in my ears like tiny jewels.

Writing gave me a way to connect with the people that I loved when my energy to socialise was low and my sutured head was still so sensitive to the world.

One day my sister-in-law sent me a beautiful card. On the front was a quote —

In the midst of winter, I finally found that there was in me an invincible summer.

I wrote it many times in my diary. The words seemed to lift me, on my hardest of days. But mostly, I wrote it because I wanted to believe that it was true. I wanted to believe that my time wasn’t up, that I would endure.

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In 2015, Australian writer Georgia Blaine collapsed in her garden, blood frothing at her mouth. She had suffered a seizure and was rushed to hospital. Later she was diagnosed with brain cancer, a tumour sitting right in the language centre of her brain. Georgia was given a bleak prognosis and a challenging treatment schedule soon followed.

She wrote about her illness in a column for the Saturday Paper entitled The Unwelcome Guest, and in her memoir The Museum of Words, a memoir of language, writing and mortality. Throughout her illness, writing was her way of holding onto life —

Time and time again, writing is my lifeline, the rope that I use, inch by inch, word by word. It is the way in which I forget myself, even though I am writing about myself. Some days, I feel it is the means by which I am keeping myself alive, escaping the death sentence of this illness for another day.

In December 2016, just 13 months after her diagnosis and two days before her 50th birthday, Georgia died, leaving behind a husband and daughter, friends and family, and her words — novels, essays, memoirs, and short stories.

Last year, just before the tenth anniversary of my diagnosis, I wrote a story about my brain tumour journey. I wrote about the passing of time and the gifts of surviving, what it means to love, and the importance of wild places for healing.

I am not an accomplished writer by any means, but by writing this story I had discovered what mattered most in my life.

Why ten years, I hear you ask? Perhaps, I had needed the time to reflect on what I had learnt, or to write uninterrupted — away from our four children, on a computer, in full sentences.

As I look back at this story, and the other writing I have shared about my illness, I feel awkward, afraid even. I can see the edges of myself. And I notice things I would have written differently now. Perhaps, time has a role to play. After all, our stories reflect where we are in our lives.

Then I let the years go and they slipped under my skin, beneath the scar on the back of my neck. The one my hairdresser found before Christmas — my story of grief dissolved in flesh. And I wonder, does the body remember? Does it keep track of the years, buried in the space where the tumour once lived?

You can read the full version here, if you like. And another here on loss and gratitude.

But this is not the only story I want to write.

There are others, jostling for space on the page. And I want to escape that familiar illness narrative arc — fall ill, battle like a hero, recover, be at peace with your journey, and share what you have learned.⁴

I’m ready to write the next chapter of my life. And I’m hoping you’ll come along with me, dear readers. For I think I have found the thing that makes me want to live a little longer, love a little harder. A line to grab onto and wrap around my life, holding it close, so I can see just how gorgeous it is.

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There is something powerful about putting an experience into language — committing words to your tongue, story to pen and paper.

Can you feel it?

Words rising like a hot flush under your skin, trembling in the air, rattling the trees, willing you to believe. We could launch love around the world with that energy; stop the glaciers melting; grow our trees fat and tall.

This is not to say that language is always a positive force. It can mislead, mistreat, destroy and divide, just as easily. But what all stories have in common — the small or large, exciting or ordinary, devastating or joyful — is their impact on us.

And I’m thinking of the opening line of a poem by Ada limòn⁵ —

What is it about words that make the world 
fit easier? Air and time.

After all, language is just breath passing through the body,⁶ squashed by gravity, sucked into the ear of another. But it is an exchange that nurtures meaning and connection. And it reminds us that we are not alone, that illness and loss, joy and love, are universal conditions experienced as a community.

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A few weeks ago, I attended a brain cancer event in Sydney. The room was full of stories — a husband searching for a miracle, a parent holding on to something like hope — the shoulder of an esteemed neurosurgeon, the name of a trial in the United States.

My skin prickled as I listened to the familiar rhythm of illness and loss. I shared my story too, always a little uneasy with my wounds, the word survivor thick on my tongue. But I said it over and over, until there was only the air and the most tender sound — a heart wanting to know how to live, just a little longer.

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And you?

Do you have a story to share?⁷

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This is part one of a very special edition of Wild and Wonderful.

Tomorrow, I will be sharing part two. It will feature a poem that I wrote about living with a brain tumour, along with a few other wild and wonderful things.

Wishing you health and happiness

with a sprinkling of magic,

Kate x

1. If you’d like to read more about brain tumour support in Australia, Brain Tumour Alliance Australia is a great place to start. Help is available here. You are not alone.

2. After Ada Limòn’s poem Wife.

3. Brain tumours and their treatments can cause swelling in the brain. Steroids, such as dexamethasone, are given to relieve and reduce this swelling. Unfortunately, steroids also cause a number of unwanted side effects.

4. 2021, Clare Doughty, Kill your darlings, How Memoir Writers are Reframing Illness

5. Ada Limòn’s poem Sway, from her collection entitled The Carrying

6. Thank you

Summer Brennan

for this lovely image

7. If this article has raised concerns for you, please call your local mental health team or if in Australia contact Lifeline 13 11 14 or www.lifeline.org.au. If you feel in immediate danger please go to your local hospital.