Case study: What Campbell knows about atypical parkinsonism and corticobasal degeneration
Julie Campbell’s heartfelt new memoir tells the story of how a devastating disease destroyed her beloved husband and the adored father of their two children.
The Butcherbird Sings: A memoir of hope and help born from a neurodegenerative disease was custom published last year by Bad Apple Press and is a revealing and moving read.
Certainly Campbell is passionate about the value of sharing stories as a tool to learn and to connect with others.
She caught up with Forever Young Autobiographies to tell us more about her memoir, the creative process and share suggestions with fellow writers …
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Julie Campbell’s memoir The Butcherbird Sings
A life of surprises
I’m now happily retired in the beautiful coastal paradise of Yamba, northern New South Wales, Australia, at peace with life, accepting of ‘what is’ and grateful for each and every day.
However, it hasn’t always been that way and my memoir tells the story of the nightmare our family lived in daylight.
In short, The Butcherbird Sings spans my early development from teenage years to early 60s, with some quite ill-suited relationships.
It’s a bit revealing as I laid myself bare, but you know, we can all make mistakes in life.
But thankfully I learned from them and went on to meet Steve, be blessed with a daughter and son and enjoyed a beautiful family life together.
A tale of two parts
That was until the diagnosis none of us saw coming – a rare neurodegenerative disease that turned our lives upside down.
Importantly The Butcherbird Sings also contains lots of positives, helpful information, alternative measures you may not have heard about, and it’s a love story.
First my gorgeous Steve turned my life around so many years ago when he said: “I would have had you and your baby.”
And then he turned my life around again when he died in my arms, sending me on a soul-searching journey for answers to why such a good man should die from such a cruel disease.
Indeed it is this latter search that is featured in Part Two of my book – about my recovery and how my spiritual beginnings really took shape.
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Why write The Butcherbird Sings?
Firstly I chose to write my story to help others with degenerative diseases and their carers and families.
Certainly neurodegenerative diseases are not rare these days.
I’m sure most people would be familiar with someone affected by Alzheimer’s, motor neurone disease, multiple sclerosis, Parkinson’s or one lesser-known.
However, life stories about these conditions are not often told in such depth.
During our six-year journey of living with corticobasal degeneration, a disease classed as atypical parkinsonism, I researched and followed every lead possible to find a cure.
So I was determined to never ever give up hope, despite being told there was no known cause or cure.
And I was blessed with meeting some extraordinary people from various professions in my pursuit.
Messages of hope and help
Also, I gained an enormous amount of knowledge on the nutritional, physical, electronic and environmental fronts.
Importantly these measures made such a difference to Steve’s quality of life and are embedded throughout The Butcherbird Sings.
Therefore to me, it would have seemed such a waste to have all the research and successes we’d had to die with Steve.
In short, I have written the book I would have loved to have had when first faced with a diagnosis that was rare and little known, even by the medical profession.
Perhaps even more importantly, it would have afforded me connections with other human souls going through this harrowing journey. And I would have known I was not alone.
Finally, it is my tribute to Steve, to find some purpose out of the soul-destroying journey that saw him lose every semblance of dignity and robbed him of all he treasured in life.
Support for the memoir
My daughter and son were key to my decision to continue writing The Butcherbird Sings.
They read the first draft, gave me feedback and encouragement.
And it was my daughter Alana who helped me see my way to write this memoir rather than the manual-style support book I first began.
While the rest of my family and friends were aware I was working on my book, no one really knew how much time I invested in this project.
Indeed it was largely a solitary process but one that had me totally engrossed.
My story is sad and confronting, and more so for family.
For example, I’m not actually sure if all of Steve’s siblings and nieces have been able to complete reading it.
Positive feedback for The Butcherbird Sings
Losing Steve was devastating to everyone.
But I know some have read it and are grateful Steve’s memory lives on, and in a helpful way for others.
Thankfully the finished product, The Butcherbird Sings, has been really well received by friends and the wider community.
Also by several worldwide support groups I belong to for atypical parkinsonism.
Furthermore, reviews give an indication of how much my book has been appreciated. And I have many personal emails and messages that melt my heart.
To hear readers say they couldn’t put it down gives me enormous satisfaction.
But to hear of those who have benefitted by following up on different helpful measures truly warms my heart.
Writing and finishing The Butcherbird Sings
Getting started
My initial planning began with a mindmap or what I call a spider with legs: the body being the book and the legs with key points at each end.
So this was my outline and I worked from there, adding to it where necessary.
Next Alana assisted with editing my early drafts and by draft No. 8 I knew I needed to seek professional help to polish my work.
After reading Patti Miller’s Writing True Stories I attended her Life Writing workshop in Sydney.
And in the intervening week spent my time at the Happy Buddha retreat in the Blue Mountains.
Finally I sought honest feedback from others, a friend in a writers’ group, a professional manuscript assessor, an editor, another editor and a proofreader.
In short, from the start of my writing to the time I submitted The Butcherbird Sings for publishing took three years.
And then another six months before I held my book in my hands.
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Overcoming writing and emotional challenges
The most difficult part of writing The Butcherbird Sings came when I got to the parts of my story describing Steve’s deteriorating condition.
Certainly it had been harrowing to witness at the time but then to relive it was shattering all over again.
However, it was essential to truly reconstruct situations to be able to portray what it was really like and in language that was sensitive and authentic.
I would be emotionally drained and my grief would take a new beating.
But in time I became able to sit with the situation and emotions. And ultimately it helped with my grieving and healing.
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Discovering writing rewards
There were several rewarding parts to writing The Butcherbird Sings.
Firstly, pressing the ‘send’ button for the final submission of my manuscript.
Second, holding my book in my hands for the first time, with its beautiful cover.
Also my daughter’s ‘thank you’ comment to me. And saying how much it had helped her cry and release a lot of grief.
Likewise having my son sit beside me as he read my book and I read another. This felt surreal and his comments were special.
Another reward was receiving amazing reviews from readers who said they couldn’t put it down.
And special feedback from individuals telling me how it helped them.
Finally, raising awareness of atypical parkinsonism and funds towards research for a cure.
Favourite parts of The Butcherbird Sings
However, the happiest parts of my story for me are the early chapters of The Butcherbird Sings.
In short, these develop our joyous, love-filled family life up until the last innocent year and are untouched by any inkling of the darker times ahead.
Also, I am really happy to have included references to some of the Facebook support groups for atypical parkinsonism: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), multiple system atrophy (MSA).
These angel groups were not around when we were going through our trials and trauma.
Tip for new writers
First, be prepared to do many drafts of your book.
Indeed I did more than 20 for The Butcherbird Sings.
Second, if you are a first-time writer, as I was, seek help in the form of writing workshops, books and writing websites like this one.
Also, get feedback from others and not just friends and family.
For example, involve a good manuscript assessor and editor.
Finally, an amazing tip I was given by my editor Irina Dunn.
This was to print the whole manuscript out when I was ready to submit and read it aloud in one session with a red pen handy.
Certainly this is a major undertaking but is also very revealing.
Because somehow reading aloud enables you to pick up on flaws in your work you don’t notice just by reading silently.
So repetitions, clumsy sentences and other poor choices stand out!
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Final say: The Butcherbird Sings
The Butcherbird Sings: A memoir of hope and help born from a neurodegenerative disease by Julie Campbell is a poignant read.
However, it’s also a story of love, emotional trauma and recovery.
You can buy a copy from Bad Apple Press, via Kindle or locally from newsXpress Yamba Fair and The Book Warehouse Grafton.
Also connect with Campbell on Facebook and Instagram.
Happy writing!
*Please note: I am not a doctor and the advice in this article is general in nature. Please contact your doctor or health professional for help that suits your specific circumstances. Further resources: Beyondblue, Lifeline Australia.
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Your say
Does your life-story project focus on a health condition like The Butcherbird Sings? I always love hearing from different people. Drop me an email or leave a reply in the comments section at the end of this article.
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