I’d used the lingo many times, openly, in front of my then, eight-year-old little girl who has had two brain tumours.
“Yeah, she’s a fighter,” I’d say when my words run out at the school gates. “She’s still battling…” or, how about this, “We’re going to win this darling, keep up the fight!”
It’s what everyone says when they talk about cancer, the enemy to be overcome – it’s the jargon, it’s THE thing to say.
Last year, three years into our own ‘battle’ I began to see that it’s not, or at least, I don’t think it should be.
After finally reaching some stabilisation after the catastrophic fallout from her first tumour, my daughter’s tumour grew back silently last year. She had endured two years of tremendous bodily and emotional torment as a result of her first tumour resection, life certainly felt like a battleground. It was a battle to keep her in school for the day, a battle to get through to meals because her brain injury made her hungry all the time. It was a battle to keep her awake because she was so exhausted and it was a battle to get her back to sleep at 4am because her circadian rhythm was wrecked. It was a battle to get her to push through pain with every step just because I needed to go to Woolworths. Her body was morbidly obese, pained and pushed to the very limit. Life was very, very hard.
But this time, when the tumour grew back I witnessed how wrong it was for my little girl to feel that her body was harbouring an enemy that put her under constant threat, an invisible enemy that she was obliged to fight – and my whole outlook on how we use language to help children cope with serious medical conditions became radically transformed in an instant; and as cliché as it may sound, I learnt to teach her about love, not hate.
This is what happened:
She is crying, it’s not time for morning tea, but she wants morning tea. Her tummy is telling her it’s hungry even though the clock says, No! Not yet!
My heart has been shattered so many times over the last two years, I don’t think it will ever go back together again. Yet it shatters one more time and I feel desolate loneliness as I stroke her forehead, her frustrated sobs filling my ears as we sit on the couch, hunger consumes her.
“It’s not your fault,” I murmur automatically, “It’s your condition, because of your tumour.”
Listen: How Samuel Johnson dealt with his sister Connie’s cancer.
She nods miserably, she knows this.
“It’s NOT your fault.”
Then the world stops spinning because for the first time, she screams those words that will change everything:
“I WISH I DIDN’T HAVE A BRAIN TUMOUR!”
Her voice is raw, coming from a dark place where shocking memories are stored but never accessed; it is frightening to hear it.
Rationally I think, but of course she wishes she doesn’t have a brain tumour but then I see the picture in pristine clarity, I can’t believe I haven’t thought of this before. She does have a brain tumour and there is a chance she could get more regrowths over the period of her life time – even if she doesn’t, she is still left with the body she now has as a result of her first, tennis-ball-sized growth. For the time being at least, this is life as we know it.
But now, hearing her roar, I realise how completely wrong I’d been, at such a tender age my daughter wasn’t happy with her life, she wished it was different and I knew in my heart that I had been a key player in that.
I couldn’t bear being a passive bystander to her suffering, I had publicly declared war on her conditions and I’d been fighting to keep her alive ever since. There is an energy to battling and war that is resistance, attack and defence – when there is war there can be no peace. Now my daughter had taken on the energy I’d set up around her – the enemy we were trying to defeat was inside her own head. I had taught her resistance, what had I done?
How could I possibly turn this around? How could I put a halt to the slow growth of resentment, sorrow and sadness that unregulated cellular growth – cancer - chose her?
By love… I thought, incredulous as a cool wave of realisation washed over me, my own eyes wide with surprise as I took a step forwards into a new world, a new timeline and new way of Be-ing. The only way I could help her come to terms with cancer, her body, her life, was the complete opposite of war: It would be with love.
"But you do have a brain tumour."
I say softly, unsure of where my words would go but acutely aware they would flow anyway and that they would even surprise me as I was saying them.
"Right now – this is who you are."
Her face then twists with agony! Oh, an eight-year-old should never have to face so squarely a realisation like this, but she knows, she understands exactly what I’m saying.
Her voice is pinched with adult ‘knowing’, acceptance and her throat has closed tightly.
"And we love you for who you are. And we will deal with this. We love you, and we love your body and your brain tumour because this is YOU right now. Your tumour is your body telling you 'Hey, something’s not quite right in here, so I’m growing!' This is how things are right now and it’s… OK."
That day, a sense of peace rained down on our house, it was palpable, the first rain in nearly three years. If we stopped fighting, everything would be OK.
Language of War
We try and teach our children that violence isn’t the answer, that war is wrong, and love and forgiveness are superior to battling, revenge and killing. Yet, at a time when our children need these values more than ever we use the language of war and hate in attempt to propel them through. Maybe being a ‘warrior’ works for some, and I do not judge anyone for choosing their own coping mechanisms during serious illness – but war and warrior talk ultimately didn’t work for me, and it didn’t work for my little girl. I am a Registered Nurse, but it took three years of watching my daughter suffer to realise that true ‘healing’ would not come from pills and interventions that may fix her damaged brain, true healing would come from falling in love with all that we faced – relinquishing fear and living in peace.
I will remember that day for the rest of my life, I call it the “Love Shift” because after it, everything changed for the better. Soon after, for the first time in nearly three years I witnessed my daughter’s soul smiling in her eyes, her eyes had been flat and empty since her first surgery.
Love yourself, and that includes your cancer…
Now her eyes were sparking as my little girl began to take tentative steps back to me, she felt safer now the battles were over, loving and peaceful acceptance in their places:
"I see happiness in there," I muse as I draw her into a bear hug, my own eyes filling with tears.
"Do you feel happy right now?"
She nods and I look into her eyes again: It is the most beautiful thing I have ever seen.
Naomi Cook has recently released her memoir ‘How She Healed Me’, documenting her journey with her daughter’s brain tumours, the devastating fallout and how her suffering took her on a journey to healing and transformation.
Watch the moving trailer here.