Monthly Archives: May 2011

The Blank Page

blank page

Photograph courtesy of Tracey Berry. More like this on Instagram. Follow @traceaberry

Plot exists along a continuum. The story has a finite beginning and an end. In this time frame the writer must decide what he wants his reader to see.

 

I’m trying to encapsulate all the things I am learning in my writing class. For five hours once a fortnight I trek from north to east to sit at a table and immerse myself in the craft. I’m an inchoate writer with much to learn, so I embrace the opportunity to ponder words over tea with a great linguist, a journalist, a musician, a film director and our teacher.

We want to write our stories and this is the thread that weaves us together. We dangle like charms, five different stories, experiences and lives. It was awkward at first. Yet as the weeks have unfolded, the boundary lines of polite conversation have been erased. We are no longer strangers separated by culture, or background, or age. Instead we are women with stories, determination and intent.

By week four we know one another’s secrets and are eager to help one another write great books. That is the goal. We all know that stories have a beginning, middle and an end; but how do you know where to begin?

How do you move beyond the blank page?

Why, when there are so many words, is it so hard to write even one?

We write to make sense of our experiences, to come to terms with grief and to plan a way forward. Sometimes the momentum of crisis management hurls us through space and time like a tightly squeezed bar of wet soap. We watch from an aerial view as our life spins and slides around the basin; then when it stops we wonder what just happened and why?

I am trying to plot my beginning on the continuum my teacher has drawn on the white board. Did the story begin at what seemed to me like the end of my life? Did it start with the phone call that every mother fears? Did it begin when the doctor told us she would die without treatment? Did it begin when her silky hair came loose in my fingers as I massaged her scalp in the shower? Did it begin when the MRD came back to confirm that she was in the ‘high risk’ category, when the search for a donor suddenly became desperate. Intense.

I am good at beginnings.

I am an enthusiastic starter.

I like small people and simple concepts.

I am first speaker in debating.

I love impromptu.

I love off-the-cuff.

I love warm-ups at Toastmasters.

I like karaoke.

I like to share my opinion, my experiences and my life.

I like to cook without a recipe.

I like to decorate a house with found objects.

I am a simple girl with a simple life; but cancer changed everything.

Is cancer the beginning? Or did the story begin as I watched people wheeled out under grey blankets on narrow stretchers because, for whatever reason, their donor was never found. Maybe for me, that was the beginning – the reality that not everyone goes through Leukaemia and lives?

We grow up thinking that bad things happen to other people, that doctors have answers for everything, that every problem has a solution. We believe in fairytale endings, enjoying the structure of narratives because eventually everyone lives happily ever after. Somehow, if we keep dancing and never give up hope the prince will come. This works with my methodology. This simple approach has resonated with me for most of my life. I can write great fairytales, oozing emotion, pretty dresses and heroine deeds; but I don’t want to embark on creative writing. What I want more than anything is to save people’s lives.

A friend challenged me recently about the importance of talking facts not opinions, being measured and not getting sucked into emotion. We were not talking about my book, but as she spoke my mind drifted to the Australian Bone Marrow Registry and the lack of donors. After our conversation I drove to writing class with the sound in my memory of the women in the black dresses wailing because Fatima died.

Each time we meet, we do speed writing exercises and usually we must respond to the question, “Why do I write?” Suddenly I realise this book is not just my story and the responsibility to tell it well becomes overwhelming. We talk about this over tea. My journalist friend tells me that when her daughter was born she donated her cord blood; then years later they were contacted so it could be used to treat a Leukaemia patient. With tears in her eyes she tells me of two of her friends who lost their battle; they never found a donor but it never crossed her mind that being a multi-cultural Australian lowered the odds. My writing teacher leans in and tells me she wants to see the raw honesty of my experience in my writing. I drive home thinking about facts.

In Kindergarten maths we learn the facts of ten. We learn how to add and subtract through a variety of skills. We make rainbows and link the numbers by colour, we learn the ‘turn around fact’ to help us see that 6 + 4 = 10 and that 4 + 6 = 10 as well. We learn to think big and add small, holding onto the large reality we know and adding the little bit more until we have a ‘complex’ equation. We have lots of practice moving counters on ten frames. We make groups with bears, we draw circles on mini white boards, and we learn the symbols that can be used to replace the words. In time we are confident about numbers and we see them in our head.

In Year 1 the children tackle more difficult things. Life progresses, we advance, we develop our skills. This week I taught Year 1 and the kids from last year were eager to tell me what they knew. They now know all the stories for ten. One by one they come to the white board and write what they know until the bottom half of the board is covered in numbers and + signs. When I think they have shown me everything one kid at the back puts up his hand.

“There’s another way to do it,” he says.

So I let him come to the front and he piously writes 20 ÷ 2 = 10.

There’s always another way to do it isn’t there? Sometimes it just takes someone thoughtful, someone who’s been sitting silently up the back using their very good brain to work out another way to make you see.

The children and I make our way to the car park with chalk. My goal is to see what they can do using the facts of ten to work out what to do with more complex numbers. Instinctively I draw a giant number line on the bitumen, numbering the squares from 32 to 45. The children take turns to stand on the line I have drawn and jump through the sums I dictate. When they have worked out the answer I give them chalk and tell them to record it as a number sentence. In Year 1 these numbers and equations are challenging, but the line in front of them and the facts they already know can be applied to help them make sense of these complexities. As I watch the children jumping and recording answers, I find myself thinking about my book.

We often have no control over the things that are placed in front of us. We look at the new concept. It is huge and overwhelming. Sometimes there are no obvious answers. We need to look at the problem from as many angles as we can think up, recording everything we know and then we need to ask lots of questions. We must gather the minds of the great thinkers. We need to search out the facts and discover that though emotion is powerful in moving people, without the facts no one knows that people are dying because there simply are not enough donors on the registry.

The story begins when we discover that our life and our experiences are not ours alone. We search for points of connection because we were not created to do life alone.

Plot exists along a continuum. The story has a finite beginning and an end. In this time frame the writer must decide what he wants his reader to see.

Like a story, a life is finite. It can be cut short before it has even begun. The Bible tells us that people die due to a lack of knowledge. (Hosea 4:6). This is certainly the case in our nation when it comes to the need for donors for bone marrow transplants. I guess for me its time to start applying the facts that I do know to more complex equations. I don’t know much but I do know that my daughter is one of the lucky ones. For us it took 8 months to find a donor match but countless others will not be this fortunate, for so many there will never be a match. The reason for this is that people don’t know how easy it is to become a donor, or maybe until it affects your life you don’t give it any thought.

In my simplicity I am also wise. I gather with people who know more than me. One of my wise friends is helping me now with research. With a PhD in pharmacy I think she may be well qualified to help. She tells me:

“To treat one patient with acute Leukaemia for one month needs 45 people to donate blood.

 

We need more donors.

 

Of 25000 cases of BMT a year – 5200 from unrelated donors and 76% (3900) of these via blood extracted stem cells…1 in 1000 donors are usually used.

 

If every donor was one person that means 3,900,000 – donors needed for these cases each year in order to find a match from non-family. Very often there isn’t a match.

 

We need more donors as statistics show cases of Leukaemia arising the reasons are unknown.

 

We need more donors available to match with increasing inter- families, alleles of parents combine – so a child of chino-American would need the same type of donor to avoid massive mismatch.

 

We need more donors to meet increasing usage of stem cells to treat other diseases such as MS, and previously untreated illnesses.

 

We need more donors.

 

Australia has 70,000 on register for its population of 22 million.

 

1000 cases in NSW in 2008 – this would require – approx 200 transplants from unknown source -and thus 200,000 donors to source these transplants. (1 in 1000)  There are not the numbers in Australia total to even support NSW!

 

The gap emerges already before we look elsewhere interstate and then look into Asia Pacific and beyond.

 

We need more donors.” Berni Morris-Smith


The real story begins when we see how our lives are interconnected, when we discover new facts, when we help people see. I am a simple girl but one thing I do well every single day is to break down complex ideas for small children. I believe in ‘inquiry-based education.’ And I’m not afraid to ask questions. I am also eager to start a revolution that might save lives. If you would like to be involved in anyway at all, please let me know.

I’m going to need lots of help. If you can’t help me…Give Blood.

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Shifting Clouds

Sometime over the course of the day, my mother’s engagement ring had slipped off my finger. The realisation dawned on me, transporting me out of real time and into the thousand little moments that preceded that moment. I was no longer where I was. Instead I was searching for that ring, replaying my movements in my head. How could it have gone? How had I failed to notice? Why had I not felt it slip away? Why was I not able to hold on?

“My ring’s gone,” I said, looking all around me, scouting the floor in the hope that it had just happened.

I loved that ring. My mum knew I loved it and said I should have it to enjoy even though she is still very much ‘alive and kicking.’ “What’s the point in waiting until I am gone and not seeing you have the pleasure of it,” she said. So for years I’ve worn her dainty little diamond with pride, enjoying the simplicity of the design.

Dad never seems to mind that I wear mum’s ring. “You should have it,” he would say nodding in agreement with my mum. That’s my parents for you. They don’t have much and everything they have they give away.

In the night I stirred, feeling the naked space on my hand. Again the reality of the missing ring clutched at my heart and I thought how foolish I had been to begin wearing mum’s engagement ring with my wedding ring when the diamond had fallen out of mine. It was only the slightest little bit too big and it didn’t slide off too easily. I had tested it a few times to make sure.

It’s just a ring, I consoled myself. It’s not a life; it’s just a piece of jewellery that can be replaced. I rolled over, desperate for sleep but sleep would not come. Instead I found myself thinking about life, about decisions, about letting go and about holding on.

In the past few years I’ve allowed myself to let go of so many things. I remember way back in the beginning, just after Sam was diagnosed, I thought I could do it all. I like to think that I am high capacity, that I can juggle, keep all the plates spinning like Lumiere in Walt Disney’s Beauty and the Beast. I can sing, do tricks, and keep a smile on my face, never letting anything crash to the floor or break. Of course this mindset is nothing more than an illusion, ‘smoke and mirrors,’ my friend would say. The truth is, I can’t balance everything. My whole world is up for review. Slowly, carefully, consciously, I am editing my life.

“Sometimes there are way too many words on the page. The reader needs to breathe, to pause in the white spaces, to find a place in the story for their own context and refection.” My writing teacher coaches me with my book in the same way I feel the whisper of God on my shoulder, coaching me with my life. He speaks to me in pictures, making me laugh. He shows me a magnificently built house but the scaffolding still surrounds it. “No need for that stuff now,” He prods me, “that was just to get you to where you are today.”

We get so used to the scaffolding don’t we? It makes us feel safe. We worry that life may all fall apart if we remove the construction around us, all those pipes and boards, so we let them stay.  We’ve got so used to living with ugly that we’ve forgotten the vision we once had for our life. Down deep, tucked under grief, there’s a little girl with grand dreams.

As I feel for the lost ring, I also feel deep regret over the latest prognosis. I am grappling to come to terms with the fact that Sam may lose her hearing as well. “I can’t keep getting back up,” I say to myself knowing that God might be listening. Hoping He decides to intervene. Then He takes me to another place beyond the house with the scaffolding to a wide open space on the headland. “Lie down,” He says. “Feel the firm soil and the soft grass beneath your back. Let the warmth of the sun caress your face. Watch the clouds roll by. Come like a child at play.”

It’s so long now since I rested. I’ve been in battle mode and I’ve forgotten how. Resting is not responsible; action produces a result, that’s my mindset. Yet I am too weary to fight and the scene before me draws me. There is blue sky and cumulus tinted with light from the sun. I give in, I stretch back, I warm to the idea.

“What do you see?” He asks.

“Fat baby arms, healthy body, fiesty Sam.” It’s the way she was and my heart breaks.

“Now what do you see?” He asks again as the clouds change form, stretch out, become thin.

“My daughter now.” I cry.

“What do you want to see?”

And between my tears I see the scene repeated in the room of the ENT specialist, and I see him lean in to look through the tiny black funnel he has wedged in her ear. I see him reach above his head and pull down the special glasses and I watch as he pushes back his chair. “There’s no scar tissue there,” he tells me and it feels like a dream.

So I look into the clouds again, settling in to this lesson with my Father, grateful He knows I’m a visual learner. I wait. I wonder if it might be possible to hear those words when we go to see the doctor again. The clouds roll back ever so slowly until the sky is only blue and the sun has changed position. I have been there a long time watching and waiting. I drift off to sleep. For the next few days I began to speak what I saw.

“Next time we see him the scar tissue will be gone,” I tell my daughter. “I think that’s what God showed me.” I tread carefully hoping this isn’t hyper-faith, hoping I really did see and hear.

Then the day comes and I hold my breath as he starts the regular routine of the check up. I watch. I am silent.

“Well, its much better.” I hear him say.

“How much better?” I ask. “Would you say 60%?”

“Much better,” he says acting calm, like it happens all the time. “There’s no scar tissue there.”

I pay the bill, I make the next appointment and I press the button for the lift.

“Its amazing, Sam!” I remark but I’m not really surprised. Delighted, elated but already informed. Like my Father is teaching me to listen to secrets, to know His ways, to hear His voice. Out on Victoria St, I look up. The sky is blue and full of puffy clouds. Adrenaline rushes through me. I can’t wait to be back on the Northern Beaches, to lie on my back on the headland. To give thanks.

When we arrive home I change quickly into walking gear. I stride up the hill with such fervour, getting to the corner store just in time to buy an iceblock before they end trading for the day. It’s mid-afternoon and the sun hasn’t got long left. It waits for me as if we have an appointment and when I find the best spot, I sit for a while. I suck my iceblock and contemplate Moses. For the last few weeks I’ve been studying the prayers of the Bible but found myself returning again and again to Exodus 33. I study it out and God shows me that the tent of meeting is not a place filled with people. It’s a place to which few want to go. “It was often just Moses and my Spirit in that tent. The rest of the people stood in their doorways, not eager to venture out of comfort and security.”

I ponder this; thinking how much I too crave comfort now. Why is the road so long and so hard? I don’t really have answers or hear a response. Sometimes God doesn’t speak. Somehow I get the sense that His heart might be breaking too, wishing we would come. Wishing we would wait and give Him time so He could show us how to live.  I lie back; I listen to the waves crash and the L85 bus straining to get up the hill. I look up and it was just how he showed me the other night. Fat cumulus changing shape until the sky is a sea of blue and the warmth of the sun is gone for another day.

I return home to the mundane of folding laundry and there by the sink something glistens in a pool of water that has settled in the plug. It’s my mum’s ring and I remember hand washing all my woollens. It must have slipped off in the water. It’s not lost after all. Sometimes it’s not the end, it’s just God’s way of getting our attention.

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