Published: August 5th, 2021
Publisher: Head of Zeus
Genre: Humour, Holiday Fiction
Format: Hardcover, Kindle, Audio
Welcome to my stop on the blog tour for this phenomenal debut. Thank you to Head of Zeus for the invitation to take part and gifted ARC.
If you were offered a chance to cure your child’s disease, would you take it?
‘A thought-provoking, compelling and entertaining read. I could barely put the book down until its equally heart-wrenching and heart-warming ending. A wonderful, smart and funny book – I know readers will absolutely love it’ Louise Fein, bestselling author of People Like Us
The Willows have been through a lot. Louise has devoted her life to caring for her disabled youngest daughter. Pete works abroad, almost never seeing his loved ones. And their eldest, Eliza, is burdened by all the secrets she’s trying to keep from her overloaded family.
Meanwhile, Patience observes the world while trapped in her own body. She laughs, she cries, she has opinions and knows what she wants. But those who love her most – and make every decision about her life – will never know.
Or will they? When the Willows are offered the opportunity for Patience to take part in a new gene therapy trial to cure her Rett syndrome, they face an impossible dilemma. Are the very real risks worth the chance of the reward, no matter how small?
Normal doesn’t exist. We are all extraordinary.
Patience is a truly remarkable debut. Heartbreaking, harrowing, honest and hopeful, this
is a thought-provoking, no-holds-barred look at what life is like for those with severe disabilities, how it affects their families, and challenges our concept of what a good life actually looks like.
Thirty-year-old Patience Willow has Rett Syndrome. She is unable to walk or talk and requires twenty-four hour care. When a new gene therapy offers the hope of reversing the condition, her family find themselves in an impossible dilemma. Is the chance of giving Patience the life they dreamed of for her worth the risks? And is it what she would want?
“She realised she had spent almost all of Patience’s life waiting for a miracle.”
The author tells the story from the points of view of each of the Willow family: Louise, Pete, Eliza and Patience. This allows us an intimate glimpse at the ripple effect of disability on those around them. We see the strain it has put on all of their relationships, especially Louise and Pete’s marriage, the financial strain, the pressure Eliza feels to fulfill her parents dreams and be everything her sister can’t, how caring for another person can slowly wear you down and the guilt and anger they all feel.
The decision to give Patience a voice is my favourite part of this book. And what a loud and memorable voice she has! By giving her the voice life has denied her, the author makes Patience visible and reminds the reader that she is a three-dimensional character who is as nuanced and complex as any other person. That she is someone who has her own thoughts, feelings, desires and dreams, despite her inability to communicate them. We get an insight into how she feels having to watch her sister have the things she can never have, how it feels knowing she is the ‘cause’ of her family’s struggles, and what life is really like for her. We are the only ones who get to see the woman she is inside, that she is an intelligent and funny person that understands everything. And I absolutely adored her.
“Over the years I’ve heard many doctors, carers, nurses and social workers debate whether I have a decent quality of life or not. So I’d like to state here, for the record, that I do. I don’t have anything to compare my life to, of course, but then, who does?”
Through this story the author challenges the concept of what a fulfilling and happy life actually is. As someone with a disability myself, albeit a much milder one than Patience, this is something I love and appreciate. Life doesn’t have to look a certain way to be valuable. A life with limits can be happy and meaningful and, as Patience herself observes, being able-bodied does not necessarily equal happiness and contentmentin life. This is what is at the heart of the family’s dilemma over whether to enter Patience into the gene therapy. She seems happy, so is it worth risking that to give her a life they consider more ‘normal’? Personally, I would cure my own illnesses in a heartbeat and would love a better quality of life. But there are some risks I wouldn’t take to achieve that and it doesn’t make my life any less joyful or meaningful as it stands.
“But the thing was, he didn’t see her as broken. He saw her as whole, as a person in her own right, her own special variety of normal.”
Victoria Scott is a spectacular talent. She writes with heart, humour, compassion and raw honesty, managing to educate while also entertaining. I was completely invested in the lives of this family and they felt so real to me, like I could go to Oxford and pay them a visit. The Author’s Note at the end of the book is a must-read as she talks about her inspiration for the story. It was no surprise to learn that she has intimate knowledge of living alongside someone with Rett Syndrome and I believe this book will not only educate people like myself who knew nothing about the illness, but offer comfort to those who have a loved one with the illness.
An extraordinary story about family, love and hope, this is a book that will linger long after reading and hold a special place in my heart. Read this book. I can’t recommend it enough.
MEET THE AUTHOR:
Victoria Scott is a British novelist, journalist, lecturer, copywriter and media trainer with two decades of experience working for online, print, TV and radio outlets around the world.
Currently, Victoria is lead tutor of the NCTJ Journalism Diploma at Sutton College, South London, and a lecturer in journalism at Kingston University.
She is also a novelist, represented by agent Hannah Weatherill at Northbank Talent Management. Her debut novel Patience will be published in 2021 by Head of Zeus, and in German translation by Droemer Knaur.
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Please check out the reviews from the other bloggers taking part in the tour.
Thanks for reading Bibliophiles😊 Emma xxx