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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22 Comments

Filed under Life

22 responses to “The Blank Page

  1. Berni

    So well put Clare and a privilege to be working with someone with such a talent for writing- your words are so well put and speak to the point to tug at all our hearts to make a difference. Here’s to being the change – bx

  2. Clare Froggatt

    Thanks Berni. Go team!

  3. This post spoke to me so much. Connection is everything. Change is an amazing aim to have. Life is so strange and intertwined and sad and interesting and full. I often think about writing more than a blog but I know I will never find the courage, as you are. Your writing is perfectly you.

    • Clare Froggatt

      Thanks Tiff, maybe that is because you are still in the middle of it all and we are edging our way out…slow but sure. I just want to be able to tell someone I found them a donor. Too many lives are cut short by leukaemia and this is now why I write. But before this, I wrote to communicate the journey and to survive it myself, a bit like you perhaps? Blogs are amzing builders of community and support. Clare xxx

  4. Terrific post and beautifully written.

    • Clare Froggatt

      Thankyou! I think they need donors in the UK (is that where you are?) as well. Thanks for commenting 🙂

  5. Hi Clare, great writing once again and so very informative. I heard you can only be on the bone marrow register if you are between certain ages? Is that correct? If so, I guess the next best thing is to donate blood.

    • Clare Froggatt

      That’s right, after 40 we are too old! But men aged between 18 and 35 are the best donors. I would love to start something in the universities. I have lots to learn about how! But I have some ideas and lots of wise friends. So the journey begins!

  6. John Peacock

    Just a’meme-oir’ to your Blank Page.
    The word ‘ meme’ was coined by Richard Dawkins in his book’ The Selfish Gene’ Dawkins said ” the meme for blind faith secures its own perpetuation by the simple unconscious expedient of discouraging rational inquiry.”Clare, as you have well illustrated you encourage “inquiry based education.” What I truly value is that you do not go simply on highly charged emotional ‘blind faith ‘ but on considerd and thoughtful inquiry-once again continuing ‘The Rational Middle” Love you Dad xxxxxx

    • Clare Froggatt

      Thanks Dad, I am impressed with your ICT skills (and mums) and your thoughful consideration of my post. Much love Clare xxx

  7. Big Sis - Kim

    Some info on Bone Marrow transplants for Donors.

    I spoke to my Ben who is a perfect candidate for donation and of course the first question was “What does the procedure involve for him ? – So here it is ( He is going to spread the word at his Uni – UTS am sure there would be many readers of this blog who know similar candidates and can do the same ) Love Kim

    Collection of your bone marrow/blood stem cells
    There are two ways you can donate your bone marrow/blood stem cells. The actual donation method best for you will be assessed by a medical specialist prior to your blood stem cell donation but ultimately
    you will be able to choose the method of collection.
    1. Peripheral blood stem cell donation
    Normally the number of stem cells circulating in the blood is low. To increase the number of blood stem cells, a hormone-like substance called Granulocyte Colony Stimulating Factor (G-CSF) is injected under the skin daily for 4 days prior to the collection. The stem cells are then collected by a procedure called leukapheresis. During this procedure a needle is inserted into a vein in your arm and your blood passes into a cell separator machine, which selectively removes the stem cells.
    The remaining blood components are immediately returned to your body.
    This procedure is performed at a hospital or blood donor centre, does not require a general anaesthetic and takes approximately 3 to 4 hours. After the procedure you may leave but another donation the following day may be necessary if not enough cells are collected.
    What are the risks? G-CSF is usually well tolerated, although during the course of the injections, you may have bone pain and some flu-like symptoms, which usually respond to paracetamol.
    G-CSF is also used to treat patients. As yet no significant long term
    side effects have been observed with prolonged administration of
    G-CSF to patients, but the long term effects of short treatments in donors is unknown. There have been some rare side effects which
    have been reported and these will be discussed in more detail if you match a recipient.
    2. Bone marrow donation
    Blood stem cells found in the bone marrow can be collected under general anaesthetic. Using a needle and syringe, the marrow is extracted from the pelvic bone cavity. This procedure can take up to two hours. In the month before the collection you may be asked to donate one or two units of blood. This blood is stored and may be returned to you after the collection.
    The time needed for complete recovery varies, but generally you can go home the same or next day, and resume your normal activities after two or three days. Normal bone marrow will re-grow rapidly to replace the collected bone marrow.
    What are the risks? The risks for donating stem cells by this method are the same as those with any procedure involving a general anaesthetic. The chance of a serious complication is very low.
    Some people may experience nausea and/or local pain and discomfort
    for several days.

    • Clare Froggatt

      You are fantastic Kim. Thanks for this (see Berni’s comment too) I might have to get Berni a sign in password so she can comment directly. Thanks Ben…you are a legend. Start a revoluton!

  8. Big Sis - Kim

    Ps On Blood Donation

    The criteria for blood donors is much simpler:-
    Over 16 , Under 70 , not pregnant or recently given birth , not had a recent tattoo, not low in iron and don’t have mad cows disease.

    If you are low in iron simply eat more spinach , get those levels up and then donate . Cheers

    • Clare Froggatt

      I think if you were in the UK during mad cow you can’t donate blood either. You have wasted your childhood watching Popeye the Sailor Man! Thanks Sis…I probably did too!

  9. Berni

    Great info Kim on donation… These days thru blood donation it has opened doors to have more available donors – more public awareness could make a global difference – the key is to start with those we know to sow the seed of awareness. Great article Clare… 🙂 let’s get the ball rolling 🙂

  10. I met a little guy (well, not so little, he’s 14 now) when I started working in haem/onc. He’s of mixed heritage, partially south American, part Asian, & also has some super funky antigens going on. He needs a BMT. He has severe aplastic anaemia, which is basically bone marrow failure. He is transfusion dependent, & is having life threatening complications from iron overload. There are no donors. It’s now been four years of searching. I am watching him die. He’s mildly retarded, & so asks the most heart breaking questions. “Will you give me your bone marrow?” he asked me the other day. Oh if only I could, Julian, if only I could.

    Over half of the children I look after are being treated with cord blood. The bigger kids often are infused with two different cords, in order to get an adequate cell dose. They take longer to engraft (which gets scary, but when they do engraft it’s good), but in general cause less GVH. I learned the other day that many more mums are saving their cord blood than were years ago, but the majority are storing the cord in private banks. These cannot be used – or at least cannot be found – by the international bone marrow donor registry. I actually went & had a tour of the Sydney Cord Blood Bank earlier this year….it’s incredible. With informed consent, cord blood can be collected from babies post delivery at a handful of hospitals in Sydney. I think they are the Royal Hospital for Women, RPA, POW Private, & St George Private.

    I’m rambling. But if you want to get it touch with anyone at SCH, let me know & I can try to help….

    Lots of love,
    x

    • Clare Froggatt

      Thanks Katie, it is heart breaking. If only people knew to give I am sure more people would. I don’t know how you manage working in the kids haemotology/oncology ward. I pray that together we can make a difference. They found cord blood for Sam but it feel through. We waited a few more months and two donors came through and the doctors were able to chose the most compatible one.

      It makes me realise, more and more, how lucky we are. Sam has some problems with iron overload too. I think it is because she needed so many blood transfusion while she waited for a donor. But I am not really sure…time to gather more facts.

      Clare xxx

  11. Lisa Mills

    Only yesterday I was having a conversation with girls in my mothers group about saving cord blood. One of the mums gave birth to her third child on Monday and the other one is ten weeks pregnant with her second bub. We live on the central coast and unfortunately do not have the facilities to donate cord blood. Our topic of discussion was ..Why isn’t there/could there be a way to safely transport and utilize this valuable assest,it doesn’t seem right to let it go to waste, any one of us would have loved to donate our babies cord blood- and between us that would be cord blood from 6 babies. I would love to help u
    on this journey Clare. You are an inspiration.

    • Clare Froggatt

      Hey Lisa, It seems that there needs to be a lot more promotion and organisation surrounding the cord blood issue. Thanks for helping me spread the word. The Australian Bone Marrow Donor Registry has some information http://www.abmdr.com.au
      Thanks for your support and encouragement. I am determined to figure out how to be an advocate on a much grander scale 🙂
      Clare

  12. Hi Clare,
    It’s a long time since I sat across from you at Parent-Teacher interviews but I read your blog and pray for you and yours.
    One thing about cord blood donation (both in Aus and here in the UK) is that public hospitals don’t seem to have the resources for it – for both my babies we weren’t offered it as an option. I’ve since found out about private companies who will harvest it, but the costs are high.
    I think anything you can do to raise awareness of the need for cord blood is fantastic.
    Love,
    Hailey

    • Clare Froggatt

      Oh Hailey, I did SO love that you taught my daughter. How I delighted in your love of words and regretted not studying English at uni myself so that I could do what you did. Maybe I will. Maybe that is next. Yes I agree, we need to raise awareness for cord blood and stem cell donation. I guess, even in starting the conversation in some small ways we are. I would be interested to research the English bone marrow donor registry and see what they do. It doesn’t seem that many people know about it here in Oz. I love your blog by the way. So love seeing you with a family! xxx

  13. Pingback: Why does your story matter? | Girl on a swing

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