Playing Hide and Seek
Rune Woodman
‘Stay here, you’re my prisoner.’ The door is closed. I’m left on my own.
I’m not concerned. My captor is a 14-year-old boy, and I’m at the Wesley Hospital in Brisbane.
I’m here to visit my niece, Amber, and her family, but they’re running late. We don’t often get the chance to spend time together. I live in Sydney. Amber lives on a farm in western Queensland with her three children, her husband, the red dust, brown cattle and long sunsets. When it turned out we would be in Brisbane at the same time I jumped at the chance to catch up.
Amber’s youngest, Matilda, has a condition called Ataxia Telangiectasia, or A-T. Every three months they go to Lady Cilento Children’s hospital for an infusion, then they come to The Wesley to see their doctors. Occasionally at The Wesley there’s a talk in the boardroom from specialists or researchers about A-T. Of the thirty or so people waiting at the hospital today there are eight children who have the condition, the rest are parents, siblings, carers. The condition is rare; those eight children represent around one third of the known A-T patients in Australia.
Everyone, it seems, is running late. Amber and her family are caught up at Lady Cilento, the researchers have not arrived, and all the children are bored. Their play has spread out beyond the boardroom into the hallways and waiting rooms nearby.
My “prison” has large windows that overlook a park, and I know the door’s not locked, so I spend a few minutes enjoying the view, then the door opens again. My captor has returned, but he is not alone. With him are his sister, a friend and her mother, who I met earlier in the afternoon – she’s on the board of the charity BrAshAT, which aims to raise awareness and funds for research into a cure for the condition.
‘Can I come out now?’ I ask the boy.
‘No,’ he states firmly, then playfully tells his friend’s mother, ‘You’re my prisoner, too.’ She steps obediently into the room as the children then race off, forgetting to close the door as they go.
I shrug my shoulders and say to my fellow jailbird, ‘I don’t know what I did to deserve this.’
She smiles. ‘They love these catch-ups; the kids with A-T and their brothers and sisters. My daughter doesn’t get out much so it’s a treat to come here and muck about.’
‘How is it you’re involved with the charity?’ I ask.
‘I want to help my daughter and be part of finding a cure, and the charity can help do that. I know A-T can be cured, it’s just a matter of time.’
I want to believe her, but A-T is a complex condition that presents with a multitude of problems and risks.
As a child with A-T you are born with all the attributes your parents expect – you have the correct number of fingers and toes, you cry, you eat, you poop. But you can’t always breathe well, and you tire easily. When you swallow food it often goes down the wrong way. This can lead to pneumonia, which, in-turn leaves your lungs scarred. Later in life the scars reduce your lung capacity and increase your risk of lung cancer.
When you do have the energy to play you can’t go outside because your skin cancer risk is too high. You might eventually develop cancer anyway, but it’s possible you won’t be treated for it because the treatment can be more dangerous to you than the disease.
For you, life threatening colds are common, and you spend more time in hospital than with your friends.
As a toddler, when you’re learning to walk, everyone thinks you’re a bit of a stumbler, and you fall down a few times, or a lot. You have more bruises than other kids, and well-meaning strangers who see you at the supermarket, or at play-group are concerned so they contact the authorities, fearful that your parents are negligent or abusive.
It’s been about 10 minutes and the door to our prison is still open. ‘Do you think they’re coming back?’ I wonder out loud.
‘Oh, you know kids,’ my new friend says. ‘They’ve probably forgotten about us.’
I don’t know kids, but I nod with pretend expertise. We decide to escape from our prison and make our way back to the boardroom.
My captor is there. He gives me a dirty look, ‘What are you doing? You’re supposed to be in prison.’
‘You left the door open,’ I say playfully, ‘I thought you’d set me free.’
‘Noooooooo!’ He grabs me by the hand and says, ‘Come on.’
This time I’m led to the reception area. ‘Stay here,’ the boy demands. ‘I’m going to get people to come and find you.’
‘Okay,’ I realise we’re playing hide and seek now. ‘But this is a bad spot to hide me,’ I say. ‘I can see the boardroom from here.’
‘Just stay there,’ I’m told.
I take out my phone and play a game.
When you’re ten years old you are just like any other ten-year-old, except that you have to use crutches to help you walk, and soon, because your arms become too weak for the crutches you will need an electric wheelchair to get around. You see this change as a good thing because you will finally be able to keep up with your older brother, who has the same condition, and has been in a wheelchair for some time.
There are also problems with your speech. Strangers, and sometimes friends, have trouble understanding you because your lips, tongue and soft pallet don’t coordinate so well, and the sounds that come out of your mouth aren’t always clear. People used to be able to understand you, but not anymore.
A few minutes after leaving me at reception the boy and his entourage are back.
‘We found you,’ his sister says with little enthusiasm.
‘Aargh,’ says the boy. ‘This was too easy.’
‘I told you,’ I say with a smile.
He tells his sister and her friend to go away then turns to me. ‘We’ve got to find somewhere better to hide you.’
He takes me by the hand once more. This time he stops in the lift foyer. ‘They’ll never find you here.’
‘I think you’re right.’
‘Don’t go anywhere,’ he commands as he leaves.
‘I won’t,’ I say, getting comfortable on a sofa, and re-opening the game on my phone.
A few peaceful minutes pass, then the lift doors open. My niece, her mother, husband and three kids barge forth.
‘Where is it?’
‘I don’t know.’
‘What time is it?’
‘I don’t know.’
‘Are we late?’
‘Were late.’
‘Take your bloody hats off kids!’
They steamroll across the room without seeing me and race down the hall.
I could follow, but I figure they need some time to compose themselves, besides, I’ve been told to stay put.
By the time you’re a teenager you’re used to the three-monthly hospital visits, but it still hurts when the needles go into your arm to take blood or deliver infusions. You spend so much time in hospital that you continue conversations with the nurses from one visit to the next. One day you hear a doctor quietly telling your parents, ‘We’re playing hide and seek with this condition, with funding, with his symptoms. All we can do is give him the best care possible.’
My captor returns to my new prison alone. His face is glum. ‘Where is everyone?’ I ask.
‘They didn’t want to come find you. They said it was boring.’
‘Well, they’re wrong. I’ve had lots of fun.’
‘Mmm, maybe.’ He grabs my hand for the third time. ‘We’d better go back. The doctors are going to start talking soon.’
Back in the boardroom I see Amber looking relieved. We catch up, chat about life and the future until the room goes quiet and the doctors start their talk. They confirm that there is still no cure, but they think some information on the use of glucose in the mitochondria, the engines of cells, looks promising. They mention a recent cut in federal funding and the damage it has caused to their research. Then they speak positively about other research projects they’re piggybacking onto, hoping to find useful information in shared data. They talk about finding a viable treatment that will give these children greater life expectancy, and better quality of life. But treatment and a cure are both hidden somewhere in the future.
You’re at High-school and learning about the past to understand the present and to follow your dreams for the future. You learn about fighting. You learn about war. You learn about peace. You learn about gender, sexuality and procreation. You learn about illness, disease and death. You’re curious and clever; you put together everything you’ve learned about A-T, and one day you find the courage to ask your mother, or father, ‘How will I die?’
You know the answer, but you want to hear it from them. You want to hear the truth, ‘Failing lungs, cancer, infections, any one of these could take you.’ You want the adults in your life to be brave, and to confirm that statistically you might not live to be twenty-five, or twenty. It’s their duty, you feel, to ensure you know the facts.
‘You might never get married,’ they should say. ‘You might never have sex. You may not even have time to fall in love, have a career, or get home drunk after an all-night party.’
You want them to be direct, but they stall when giving you an answer. You don’t understand why. You don’t understand how difficult it is for a parent to tell their fourteen-year-old child that they may have already lived more than half their life. You don’t understand the differences between your childhood and theirs. You don’t understand the things that they know, and do, and have that will never be yours. You push harder and ask them, ‘When will I die?’ and you’re confused again when the only answer, the best but most useless answer they can come up with is, ‘Too soon.’
After the talk I spend some more time with Amber and her husband and her Mum and the kids until it’s time for me to leave. Then there are hugs and kisses goodbye with my family at the lift before I head down to the ground floor where I come across my captor and his sister again.
‘Hey,’ the boy says, all smiles. ‘Are you going home?’
‘No, I’ve got a meeting to get to.’
‘We’re going home,’ his sister says.
‘I had a lot of fun today,’ I say.
‘Really?’ the boy looks pleased. ‘I did too, but it would be better if the others played properly.’ He throws a dark look towards his sister.
‘I was playing properly!’ she defends herself.
We chat as we make our way to the exit and I walk out towards the street.
‘Bye-bye,’ the siblings yell and wave.
You’re spending yet another day in hospital having tests. You meet with doctors and nurses in the morning, then after lunch there’s a presentation being given about your condition by specialists and researchers. It’s important. The researchers are late, you’ve got time to kill and you’re bored. You see a stranger, a man, talking to one of the other adults. Mischief crosses your mind, you point your wheel chair in his direction, cross the room and take him by the hand. ‘Come with me,’ you say. ‘You’re my prisoner.’
More information about A-T can be found at brashat.org.au.
© 2020 Rune Woodman
About the Author: rune Woodman
I am an Australian writer, based in Brisbane, Queensland. I have one published children's novel, 'The Ordinary Animals' (2012, Little Steps), and am an occasional content provider for Audible.com.
Fuelled by the desire to be a better writer I have completed a Graduate Certificate in Literary Classics from Griffith University, and will finish my master’s degree in Writing, Editing and Publishing at the University of Queensland in 2020. On weekdays I write fiction – currently three young adult novels about runaways. On weekends I write creative nonfiction – which is mostly about my extended family.