I also became an active cancer patient advocate with CanSpeak Queensland, the voice of the cancer community, which led to a position on the Community Board Advisory Group (CBAG) for the Metro North Hospital and Health Service – the largest one in Australia. CBAG provides advice to the Metro North Hospital Board on consumer and community engagement to improve health outcomes for communities in Metro North Brisbane.
My mother’s campaigns for equal rights for women and an adoptee’s legal right to know their mother’s information stood behind me as a reminder that ‘turning up’ to contribute in public life makes a difference. My survival was one legacy of my mother’s premature death; another was my own mission to try and reduce the chances of other mothers dying young.
Celso’s diagnosis and hope
But if I’m not the same, the next question is, ‘Who in the world am I?’ Ah, that’s the great puzzle!
Alice talking to The Rabbit
Lewis Carroll, Alice’s Adventures in Wonderland
I have no qualms diagnosing your son as having autistic behaviours, so now you can apply for government funding, said the developmental paediatrician. He was South African, wore a pink-striped shirt and aligned his desk’s writing pad so it sat square to the tabletop.
Great! I said and meant it. Celso’s exclusive activities, like reading book after book about birds while avoiding all eye contact, were clues that he tended towards an Autism Spectrum Disorder.
A label was helpful to tell others, but mostly useful for B and me. When strangers asked with raised eyebrows and upwards inflections, And how old is your son?
He’s three, I’d say, then feel a need to explain him.
When we first started Celso on the Son-Rise Program around his fourth birthday, it felt like convincing a child from Atlantis to break the watery surface between us and enter my world. We set his bedroom up with high shelves, mirrors and padded floor, so I could run the play-based therapy in his bedroom. The high shelves were for getting distractions, like toys, off the floor and up high, and if he wanted something he needed to communicate with someone to get it (this sounds punitive, but it wasn’t). This basic-sounding idea for communication was very effective. Celso’s eye contact improved remarkably as he was so keen to get his Schleich toys or his books.
The mirrors were for communication too. It was less demanding on Celso to look at you via the mirror – like being at one remove from direct eye contact, something most people with autism feel acutely. The padded floor was for comfort in play.
Celso was squirming his way to the middle of a springy child’s tunnel. I grabbed the reinforced circles and picked up the tunnel and him, held him up in the air, then lowered him gently down. His end-of-the-broomstick sharp little feet punched out through the fabric.
I’m hungry! Yum, yum, yum. I pretended to bite his feet.
He was squealing, excited, a bit frightened – happy.
I pulled down the lip of one end of the tunnel and Celso stared with his pearl teeth exposed with bright-eyed laughter into my face.
I love it when you look at me! I pointed to my eyes.
He was maintaining eye contact. Should I milk the moment with positive reinforcement? Instead, I smiled back at him and continued bite-play.
Since we’d started therapy he had gone off all medication and started eating, drinking water, spelling up to 50 words like echidna with his wooden blocks, or typing them out on our computer. His eye contact had improved considerably, he sought us out for cuddles and kisses, he gestured and expressed wants and needs. And most noticeably his receptive language had turned on. He understood and responded to everything we said. We were on our way. I didn’t know how far Celso would swim up to the surface of our world from his Atlantis, but he was swimming – I could make out the clear lines of his face now.
As the year drew to a close I received my Master of Arts (Research). I had written that novel in the end, a young adult fantasy. It wasn’t published, but it existed out of my mind and on the page.
I’d spent my 30s wrestling myself back from the jump into the unrecoverable: grief, madness, death. I held the image of myself like a hand mirror. Up until my mother’s death I’d have said, You’re the stable one. I didn’t know if that was so true anymore. Mainly I glimpsed the bright, real rays of hope in a life – the life I was given. The exquisite working mind and working heart of a healthy body. Every day I had a daily Oh gods thank you when I caught myself throwing Celso into the air with the strength of my non-cancerous body. Fingers crossed, may it last as long as humanly possible.
The word heaven kept popping into my mind. I said this often. I had no desire to reach the Christian version, but rather the children’s author Philip Pullman’s idea of a republic of heaven on earth. It wasn’t always pretty and kind but four years on from breast cancer I’d reached my own republic.
My life had been saved three times. The first by a surgeon’s hands after the birth of my son. The second was by my mother’s death and its education of the better medical choices to make on my diagnosis. The third: by writing. I needed it to access a language of grief, buried ambition and hopes for a future I wanted, but didn’t know how to reach. Writing my life was the second helix coil twisting and turning inside me rebuilding my body.
My mother and I in November 2005, one month before her death
Acknowledgements
To my partner, B, and our son, Celso, thank you. To the family and friends that flocked around us
