I’ve spent a little over four years learning to navigate the world in a new body. In that time, I’ve survived two brain surgeries, thirty-six days of radiation treatment, four life-threatening hospitalisations, and they’re just the headlines. Life, however, happens in between the big, bold writing. It’s smaller. Quieter. But no less complex.
This new body is not like my old one. The expectations of friends and the pressures of work are in a constant state of conflict with this body that behaves differently. This body that does not conform.
The structures and services of society were not built for her. I need my fingers and toes to count how many times I’ve been stuck in the CBD on a hot, sticky day and wondered why there aren’t beds on public transport. Sometimes sitting upright on a lurid-coloured tram seat is simply too much. Sometimes you must be horizontal.
My six-year-old son understands that Mum’s body is complicated. He knows where the emergency cortisol injection is kept and how to call Daddy or the ambulance for help. But the days when such knowledge is required are thankfully few. More often, it is his compassion and flexibility that are required. Qualities not generally abundant in a kid who hasn’t learnt his multiplication tables yet. A kid who regularly forgets to dress himself in the mornings because he’s been distracted by a Transformer, a rubber band or his own fingernails.
When Mum is feeling sick, my boy proves he is no longer a baby. He clambers onto the bed, with his enormously gangly limbs, and pats my legs. His eyes are full of emotion, checking to see if I am too hot or too cold or if I need a glass of water. He holds my hand and strokes my hair. ‘Do you want company, Mum? Or privacy?’
Company. Always company.
I grit my teeth through the pain which comes from deep inside my bones. I breathe deeply until the nausea abates. I silently recite lyrics from my favourite musicals to distract from the headaches. And I remind myself that this too shall pass. That this is a tiny price to pay for being alive to watch my kid grow up.
On the rare days, my frustrations spill over, my child is quick to forgive. While I try never to speak ill of my body in front of him, even the best efforts fail occasionally. In those moments of despair, I berate the loss of function, ability, beauty and agility I once possessed. But my son is as protective of the vessel which carries my soul as he is of the soul within. ‘Don’t talk about your body like that, Mummy. It’s a beautiful body.’
I am both cared for and care-giver. A combination for which I have so far failed to find words.
But, finally, here is a collection of stories just for me.
We’ve Got This: Stories by Disabled Parents, the first major anthology by parents with disabilities, is edited by Eliza Hull and published by Black Inc. Out now at all good bookstores.