Read my story about family estrangement and
growing up with a rare form of congenital lymphoedema

…the veil of secrecy surrounding lymphoedema is stripped away… – William Repicci, CEO of the Lymphatic and Education Research Network (LE&RN).

…an extraordinary story, vividly told… – Angela Savage, author of Mother of Pearl

…candid and compelling – Hazel Edwards, OAM, author of There’s a Hippopotamus on Our Roof Eating Cake, and many other books

Are you one of the 250 million people worldwide living with lymphoedema  – and yet who feels utterly alone? 

Today (March 6) is World Lymphoedema Day, but few people understand the daily struggle of living with this incurable, progressive and often misdiagnosed swelling disease.

I was born with Milroy’s Disease (MD), a rare form of congenital lymphoedema, which wasn’t diagnosed until I was 18. There was no name for it, and no cure. My right leg, a bigger version of my left, was just known as my “big leg”.

Growing up, I thought I was the only one. I never saw anyone like me.

It was accepted that nothing could be done, so it was largely ignored. I barely acknowledged it myself. I spent most of my adult life hiding under long dresses and baggy pants. I didn’t talk about it. Nor did I write about it.

My lymphoedema story was always just part of a much bigger story about family estrangement. My sister Juliana and I each grew up allied to a different parent in the family war. It took decades for me to work out what happened, and for us to find each other again.

It was my editor, Virginia Lloyd, who urged me to include my lymphoedema story in my story of family estrangement.

In writing my family story – Cleaved, a story of a loss, legs and finding family –  I finally understood how growing up with my “big leg” had shaped me.

So in a way, I am now, finally, “coming out” – with the support of the leading global organisation for research and advocacy into lymphatic disease, the USA-based Lymphatic Education and Research Network, which I am proud to say has endorsed my book. See CEO William Repicci’s full review HERE.

LE&RN spokesperson is actress Kathy Bates, who suffers from lymphoedema in both arms due to mastectomy. (See Kathy tell her story and talk about LE&RN’s work below).

Cleaved has not been traditionally published. Although I had several “warm declines” from publishers (as my editor put it) all said memoir from an “unknown” was a “hard sell”. By comparison, all who’ve read it so far have had the same reaction: they couldn’t put it down. See reviews HERE.

As far as I know, there is no other account of what it’s really like to live with lymphoedema from birth to old(er) age.

READ AN EXCERPT HERE

So instead, I’ve made it available as digital download for just $3.99 (AUD) with $1 from every download donated to LE&RN to help fund its mission to finally find a cure for this debilitating and disfiguring disease.

How to download:

1. Click the download button above and follow the prompts to pay.
2. Check your email (and spam) for your receipt. Click the word “download” on the receipt.
3. The PDF will appear in your “downloads” file on your computer.
4. Save it to the file of your choice – e.g. documents. If you leave it in “downloads”, when you open it again, it will regard it as another download and ask you to pay, as there is a download limit of one copy per purchase. If this happens, don’t pay again! Email me at jane.cafarella@gmail.com and I will help you.

In Cleaved, you won’t find an “against the odds” story of extraordinary physical achievement. I’ve always hated those “heroic” stories of super-human people with a disability running marathons or climbing mountains.

Stories like that always make me feel like the mountains that people like me (and possibly you) climb every day feel so much higher.

My lymphoedema story is just part of my life story, because having lymphoedema from birth meant that it was just part of my life.  Just like losing my sister was part of my life.

In the end, there was no miracle cure for my lymphoedema, but by some miracle, I found my sister.

I hope you enjoy my story of loss, legs and finding family, and that you’ll reach out to tell me what you think. (jane.cafarella@gmail.com)

(If you usually come to this website for free theatre monologues, this post may be a surprise. I hope you’ll consider reading my book, which is full of family drama!)

If you have lymphoedema, I hope you’ll tell your own story on the LE&RN website and help others understand that they – and we – are not alone after all.

Watch KATHY BATES talk about why people like you matter – introduced by LE&RN CEO William Repicci:

Here’s what LE&RN CEO William Repicci says about Cleaved.

The World Health Organization estimates that up to 250 million people worldwide live with the incurable, disfiguring, progressive, and little-known disease called lymphedema. In Jane Cafarella’s new memoir, Cleaved, the veil of secrecy surrounding lymphedema is stripped away as we meet a young girl in Australia living with an undiagnosed deformity. Ms. Cafarella weaves a stirring and universal coming-of-age story where the audience gets a rare glimpse of the impact of living with a disability while traversing the many roads on life’s journey.

Here’s what readers like YOU are saying about Cleaved

… I am transfixed. I think it might reach into my heart. I can’t put it down – Marie McNamara, Newstead

Fabulous!….Reluctantly putting your book aside to help with dinner – Denise Wheelan, Castlemaine

 Shamefully, I’ve been lying around all day finishing it, cause I couldn’t put it down. – Suzanne Walshe, Maldon

 …an incredible story. Beautifully written, … Personally, I found it hard to put down… – Bronnie Dean, Harcourt.

…a courageous search for a truth that reads like a compelling mystery. – Angela Ryan, South Melbourne

I cried reading it today. I think it’s just beautiful writing and honesty. It was such a joy to read. – Bradley Dawson, Castlemaine

An intriguing family story – read it in two days. I couldn’t put it down…will resonate with anyone living with lymphoedema.– Susanne Ellis, Occupational Therapist, Hand, Lymphoedema and Wound Clinics, Bendigo Health.

…Very relatable and unputdownable…– Cate Mercer, Castlemaine

A page turner! – Kathy O’Keefe, Castlemaine

Want to find out more? See how LE&RN is offering hope to people like you and me:

Tell your story

Tell your story here on the LE&RN website, and join the patient registry.

https://lymphaticnetwork.org/living-with-lymphedema/your-stories/

What is lymphoedema?

https://lymphaticnetwork.org/living-with-lymphedema/lymphedema

With grateful thanks

My grateful thanks to LE&RN CEO William Repicci for his support and to Professor Peter Mortimer, Professor of Dermatological Medicine, Molecular and Clinical Sciences Institute (Dermatology Unit) St. George’s, University of London, and Honorary Visiting Professor, Kings College, London, for introducing us via email. Peter has developed the area of Lymphovascular Medicine, and has more than 280 publications cited on PubMed. He provides an advisory service for patients via the LE&RN website:

https://lymphaticnetwork.org/ask-experts/e/peter-mortimer

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What do we really leave behind as authors?

This was the question I chose to discuss last month when I had the honour of delivering the keynote speech for the 2023 Nance Donkin Award for Children’s Literature, presented biennially by the Society of Women’s Writers’ Victoria. (Scroll down to read the speech).

Although I am not a children’s author, like Nance Donkin I was a journalist who championed women’s rights, so in many ways I was a kindred spirit.

It was a privilege to hear about the wonderful work of all five nominees, Teena Raffa-Mulligan from Western Australia, Susanne Gervay OAM, from New South Wales, Pamela Rushby from Queensland, Alison Lester from Victoria and Sharon Booth from Tasmania, many of whom were familiar to me from the books I’d read to my own children.

Congratulations to the winner, PAMELA RUSHBY.

Pamela is the author of more than 200 books and has won many awards. Like the stories Nance Donkin, many of Pamela’s stories are inspired by history.

For more about Pamela, click here:

https://pamelarushby.com/

For the judges’ report and information about the other nominees, Nance Donkin and The Society of Women Writers Victoria click here: https://www.swwvic.org.au/competition/nance-donkin-award-for-childrens-literature/

Read on for the keynote speech…

Many years ago, while fossicking in a rambling second-hand bookshop in Guildford, near Castlemaine, I came across a children’s book called  A Peep Behind the Scenes by Mrs O. F. Walton.

Seeing this book was like greeting an old friend. When I was about 10, my sister and cousin and I spent one particular wet September holiday together, weeping over it.

I immediately bought it to read with my eight-year-old daughter.

A Peep Behind the Scenes is about poor little Rosalie, forced to travel from fair to fair in England with her cruel father and dying mother in a travelling theatre.

One day, a visiting preacher hands her a picture of the Good Shepherd holding a lamb, with the text underneath: “Rejoice with me, for I have found my sheep which was lost. There is joy in the presence of the angels of God over one sinner that Repenteth”. 

By the time Rosalie had converted her fifth sinner, my daughter was asking “When are we were going to get the fourth Harry Potter book?”

Despite this, I persevered the next night, but when we came to the sermon about how only the spotlessly white can enter heaven, my daughter said, “This is a load of bull, isn’t?”

 I later discovered that the book was first published in 1877 as part of the 19^th Century Lamplighter Rare Collectors’ Series – Christian books often given as Sunday School prizes. 

The book was said to be an excellent tool for teaching discernment. But it didn’t work for my daughter, as she and her brother are now both in show business.

I make this point because amazingly, A Peep Behind the Scenes is still in print  – and is available on Kindle.

It’s been made into a film and there’s a Wikipedia page about it,  and another one about the author, Amy Catherine Deck, a preacher’s daughter (1849- 1939) who wrote under her married name of Mrs O. F. Walton and specialised in Christian books.

A Peep Behind the Scenes is also immortalised on Project Gutenberg. Mrs O. F. Walton also has 21 books on Goodreads, with an average rating  of 4.19 out of five stars, 1,830 ratings in total,  211 reviews and has been shelved 4,003 times. So far.

“Shelved” means you have added a book to your library by placing it on one of the exclusive shelves on Goodreads, such as, Read, Want to Read or Currently Reading.

Nance Donkin, (1915-2008), who received an Order of Australia in 1986 and this society’s prestigious Alice award in 1990, also has a Wikipedia page and 21 books on Goodreads.

Average rating 3.38 out of five stars, 16 ratings, two reviews – shelved 53 times.

One reason for this disappointing comparison is that the works of Amy Catherine Walton live on, while those of Nance Donkin do not, as all are out of print, although some are available on Amazon second-hand.

It’s easy to assume that works that don’t live on are undeserving – just as it’s easy to assume that work that doesn’t find a publisher is undeserving.

But the questions of whose work lives on and whose gets published are as complex as they are interesting.

On January 5 1951, in her Bookworm Corner column published in The Argus Weekend Magazine,  Nance Donkin offered her own definition of a  “good children’s book”.

“One of the real tests of a good children’s book, is that adults should be able to read it right through and find it holds their interest,” she said.

If the opinion of Dr John Hughes, retired Senior Lecturer in  Education at Deakin University in Melbourne is any indication, Nance Donkin’s books do more than just hold interest.

In his paper titled Convicts and Settlers: Nance Donkin’s Novels of early Sydney and More, published on Academia, Dr Hughes describes Donkin as “a popular and prolific author” in her day, whose work has fallen into “unwarranted neglect”. 

To examine why, Hughes analyses the plots and characters of Donkin’s main works, comparing them to her contemporaries and the popular children’s authors who came after her, and concludes:

“Nance Donkin is not a children’s author with the power, or range, for example, of Ivan Southall (arguably Australia’s greatest children’s novelist), or Patricia Wrightson, Morris Gleitzman, Nan Chauncey, Christabel Mattingley, or John Marsden.

“But Donkin presents interesting characters and intriguing narratives, and deserves to be read.”

Hughes suggests a new audience might be found by those interested in our national past.

“Deserves to be read” is an interesting phrase. It implies a right to legacy.

In Ancient Greece, as exemplified in Homer’s Iliad, legacy is defined as “time”, spelled like our word time – which is honour,  and as “kleos”, which is glory.

And, of course, “kudos”, which was the physical manifestation of glory – the prizes and goodies you amass throughout life – such as the Nance Donkin Award for Children’s Literature.

The “time” or honour is the fame we collect during our lifetime and the glory is what we leave so that the “esomino”  – those who live after us – are going to know about us, because that is the way we continue to live.

(These days, thanks to social media, the esomino are going know about us whether they like it or not.)

Historically, it’s been much harder for women to achieve this “time”, “kudos” and “kleos” –  firstly because historically women were mostly denied education and status – and are still denied these in many countries today.

And secondly because children’s literature has historically been undervalued.

I recently heard a story about a children’s author who was dating a paediatrician.

One day, as they were driving, he turned to her and said, “When are you going to write a book for grown-ups?”

It was at that moment she knew the relationship was doomed. 

Later when she thought about it, she regretted not saying “When are you going to start treating grown-ups?”

I don’t think anyone ever said that to Alan Marshall after he wrote I Can Jump Puddles, his childhood memoir, now considered a “Australian Children’s Classic” although he did also write for adults later.

Interestingly, I Can Jump Puddles, first published in 1955, is still in print, published as a Popular Penguin and an audio book.

My own experience as a reader, suggests the reason for this.

 I was 12 when I read I Can Jump Puddles and like Alan Marshall, who was crippled with polio as a child, I had a leg problem.

I was born with Milroy’s Disease, a form of lymphoedema –  a progressive swelling disease that meant my right leg was twice the size of my left.

Nothing was known about lymphoedema then, so it was ignored.

Besides, I had other more pressing problems, including petit mal, a form of childhood epilepsy.

Despite this, I was very “well adjusted” – my mother saw to that.

But in Alan’s story, I saw a kindred spirit – someone who understood my daily struggles that were keenly felt but never articulated.

Seeing my interest, my mother encouraged me to write to him and I became one of the many children with whom he corresponded.

When I was 14, I visited him in his home in Eltham and when I eventually became a journalist, I interviewed him several times.

As Philip Nel, the author of Was the Cat in the Hat Black? – The Hidden Racism of Children’s Literature, says “Children’s books shape us more profoundly than almost anything else we read…because we encounter these when we are very much in the process of becoming…” 

Children’s books, he says, tell us whose stories matter and whose don’t.

I Can Jump Puddles told me that people like me mattered.

But children don’t get to decide what matters.

Today in the USA, 19 states have banned children’s books that still matter to millions of readers.

Dr Seuss’s picture book Hop on Pop is banned because it encourages disrespect for fathers.

Charlotte’s Webb because talking animals are disrespectful to God.

And Anne Frank’s diary (Diary of a Young Girl) because it’s too sad, although we may guess at the real  reasons.

It’s clear that these bans are a battle of ideologies, and have nothing to do with literary merit.

Australia isn’t banning books, but it is changing them – deleting content that’s considered outdated, offensive or inappropriate –  and rewriting it in more acceptable language.

In The Guardian (Australia) in February this year, in the debate about Roald Dahl’s books, Rosemary Johnston, Professor of Education at the University of Technology Sydney, noted that racist depictions of Aboriginal people and Chinese and Irish immigrants had been deleted from the Billabong books by Australian author Mary Grant Bruce (1878-1958).

“It’s really nuanced,” she said. “We want that freedom of expression and to maintain the integrity, but we don’t want to publish anything dangerous that would impact a child’s life.”

I wish they’d thought of that when I was 13 and was given a book with a story about a boy called Joseph whose jealous brothers plotted to murder him, and who eventually threw him into a pit to rot. 

That story came from The Children’s Bible, the scariest book I ever read.

Don’t get me wrong. My family wasn’t the least bit religious – otherwise they would have known what was in that book.

The trouble with changing books is that the world is constantly changing culturally and socially.

 What are we going to do – keep changing every book with outdated and inappropriate language?

The Iliad does not fit with contemporary sensibilities, with its horrifying depictions of battle and its treatment of women as war prizes. But should we rewrite it?

Personally, I think books should be left alone, as cultural and historical icons of their time. Rather than being banned or changed, the should be used for discussion and learning.

There is also an inherent assumption here that children approach books in the same way as adults.

In a discussion on YouTube with Daniel Hahn editor of The Oxford Companion to Children’s Literature, award-winning UK children’s author Gillian Cross says children read in a different way from adults –  “a very immersed way”.

Daniel Hahn adds that the books you read as a child “shape your mental furniture in a way that books we read as adults seldom do”.

This point is exemplified in a 2011 Goodreads review of Nance Donkin’s book Johnny Neptune by Australian poet Janelle Bailey.

Bailey writes: “I first read Johnny Neptune as a child, and with it falling into obscurity since, I thought I would never be able to read it again. But thanks to the blessing of an interlibrary loan, I have at last been able to revisit this story after all these years.”

At first, based on her recollections of reading it as a child, Bailey gave Johny Neptune three-stars.

After rereading it as an adult, she gave it five stars for historical detail and three stars for plot and character, because Johnny was a bit unrealistic.

But, more interestingly, she added:

“I can’t honestly remember what impact these issues had on me when I read this as a ten or eleven year old.

For this reason I would still recommend Johnny Neptune to any young reader who is interested in the history of Colonial Australia.”

In other words, as a child, she didn’t read it with the critical eye of an adult, but in the immersive way that Gillian Cross suggested.

This doesn’t mean that children aren’t discerning.

I was eight when I read The Toy Princess a story by Mary De Morgan in a collection called A Book of Princesses, selected by Sally Patrick Johnson and published by Puffin Books in 1965.

I still have this book, and its description on the front page is strangely apt for our times.

It begins, “There is a time to read stories about people like yourself and a time to read about people who are different.”

The Toy Princess is about a princess who is different. Born into a kingdom where it was frowned upon to say anything more than necessary (boiled down to four phrases: “Just so”, “Yes, indeed”, “Thank you” and “If you please”) the joyous and expressive young Princess Ursula is always transgressing.

Eventually, her fairy godmother removes her to the home of a kindly fisherman and his family – leaving a toy princess in her place.

When Ursula turns 18,  she is reunited her with her father, the King, only to discover that the he and his subjects prefer the toy princess.

Princess Ursula gladly returns home to the fisherman’s cottage and marries his son, living happily ever after.

 I wish Lady Diana Spencer had read this book.

Not surprisingly, the author, Mary De Morgan, was writing in the time of Queen Victoria and the story was a response to the Victorian requirement for extreme politeness.

The message I took from this book was not to be less polite to my parents, as the book banners might fear.

The message I took away was to value freedom over status – especially as a girl – a lesson that has stayed with me.

As you see, legacy isn’t always the result of prizes, although prizes are still very nice.

In closing, I would like to congratulate all nominees for this year’s Nance Donkin Award, for your courage and talent, and remind you that “legacy” – often fickle and elusive – comes from the moment a child picks up your book and finds something that she can use to “furnish her mind”, or perhaps even change her life.

Click here to view plays and monologues

Members Only, a short play about password dilemmas, will feature in the Acting Out Troupe’s debut performance, Senior Moments, in Mt Barker, South Australia, and will also be performed by students at Butler University in Indianapolis, and Bismarck High School in Arkansas, USA.

What do Mt Barker in South Australia, Waiheke Island in New Zealand and Indianapolis, Florida and Arkansas in the USA and have in common?

ALL will be staging my FREE short plays in the coming months.  

Hannah Luciani, a theatre major at Butler University, Indianapolis, USA, Emily Golden, a sponsor for the Drama Club at Bismarck High School in Arkansas, USA and Anne Marie Serrano at the Acting Out Troupe in Mt Barker, South Australia, will all be producing Members Only, my short play about the problem of passwords.

William Glenn, theatre instructor at the Pasco-Hernando State College in Wesley Chapel, Florida, will be producing and directing Oliver with a Twist, an absurdist play about modern food culture, with his Theatre Appreciation Class for their final end-of-term project.

And Linda Savage will be producing and directing Advice to Young Lovers on Valentine’s Day, about a much-married florist, for the Artworks Community Theatre in Waiheke Island, New Zealand, as part of the company’s Short ‘Solo’ Play Show.

Meanwhile, Lorri Alexander, from Cape Code, Massachusetts, will be producing the monologue Flowers, about a rebel social worker, at the Academy Playhouse in Orleans.

‘The Last Minute’ a winner at World Monologue Games

I’m also thrilled to report that Clare Martin-Reed in Northhamptonshire in the Midlands, UK, came third in the Regional Finals of the World Monologue Games with my monologue The Last Minute, about a woman who is fed up with Christmas.

Here’s a video (below) of Clare’s wonderful performance (she’s the fourth actor). Congratulations, Clare!

Thank you so much to all those who have chosen to use my work and who have reached out to let me know.

It’s great to feel connected to the international theatre community from way “down under” in my little rural town of Castlemaine in Victoria, Australia.

My FREE monologues and short plays are available on the condition that I am fully credited and you let me know when and how they will be used, and send photos and feedback. I love hearing from you!

Here’s what those who are using my work are saying about it:

“I looked online , happily came upon your monologues and this one really stood out . It’s lovely,”

• Lorri , Cape Cod, MA, writing about Flowers.

I had some terrific feedback from those who watched it – they loved the piece.

• Clare Martin-Reed (Northhamptonshire, UK), afe about The Last Minute

Finding interesting and challenging monologues for women to assist with auditions can be a difficult task, especially for amateur theatre. It was such a pleasure for me to find a number of your monologues that I would like to use to assist the actors who bravely come out to audition for our local theatre group.

•  Douglas  J. Avram, Elgin Theatre Guild,  St Thomas, Ontario Canada.

I absolutely loved it.

Linda Savage, Waiheke Island, NZ, writing about Advice to Young Lovers on Valentine’s Day.

….the kids LOVE this play! I think it is by far their favorite.

• Emily Golden, Sponsor for Short Play Festival producing Members Only at Bismarck High school, USA.

Looking for MORE MONOLOGUES FOR WOMEN?

See links below to the individual TURNING POINTS monologues about key moments in the lives of women, or go to the full collection)  

Choose for women over 40

• Popping the Question – 3 (Drama)
• Something Different (Drama)
• Advice to Young Lovers on Valentine’s Day (Comedy)
• The Glad Goodbye (Drama)
• The Tidy Grave (Drama)
• The Gift (Comedy)
• For When She Comes (Drama)
• The Last Minute (Short version – Drama)
• The Addict – 2 (Drama)
• The Lesson (Comedy)
• Gone (Drama)
• Peachy (Comedy)
• The Secret Sin (Drama)
• Hungry (Drama)
• Foolish (Drama)
• Unbearable (Drama)
• Imperfect Match (Drama)
• The Hardest Decision (Drama)
• Worth It (Drama)
• Inheritance (Drama)
• The Grassy Hill (Drama)
• Fault Lines (Drama)
• Snapped! (Drama)
  

Choose by length

One minute 

1. Imperfect Match (Drama)
2. Gone (Drama)
3. Peachy (Comedy)
4. Foolish (Drama)
5. The Last Time (Drama)
6. Quiet (Drama)

 90 seconds 

1. Popping the Question 2 (Drama)
2. The Addict 1 – (Comedy)
3. The Addict 2 (Drama)
4. The Gift (Comedy)
5. Becky’s Mum (Drama)
6. The Right to Choose (Drama)
7. The Hardest Decision (Drama)
8. Grateful (Drama)
9. Hungry (Drama)
10. Snapped! (Drama)
11. Unbearable (Drama)
12. The Secret Sin (Drama)

  Two minutes 

1. Popping the Question – 1 (Drama)
2. Popping the Question – 3 (Drama)
3. The Perfect Dress – (Comedy)
4. The Tidy Grave (Drama)
5. Fake Tears (Drama)
6. Later (Drama)
7. The Lesson (Comedy)
8. Ungrateful  (Drama)
9. Not Too Late (Drama)
10. Worth It (Drama)
11. The Grassy Hill (Drama)
12. Fault Lines (Drama)
13. The First Time (Drama)

 Three minutes 

1. Advice to Young Lovers on Valentine’s Day (Comedy)
2. Soggy (Drama/Comedy)
3. The Glad Goodbye (Drama)
4. Perfect Match (Comedy)
5. Inheritance  (Drama)
6. Something Different (Drama)
7. The Last Minute (Drama)

 Four minutes 

1. Mr Right (Comedy)
2. For When She Comes (Drama)