Published 5th August 2021 by Head of Zeus.
From the cover of the book:
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?
And what is a 'normal life' anyway? Is Patience about to find out...?
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Patience is a stunning novel that introduces us to the life of the Willow family. Mother Louise has devoted her life to caring for her profoundly disabled youngest daughter Patience, who suffers from Rett Syndrome, a rare degenerative condition that affects only girls; father Pete spends most of his time abroad earning a living to care for the loved ones at home that he rarely sees; eldest daughter Eliza tries to be the perfect daughter, filled with secrets she dare not share with her parents for fear of overwhelming them; and of course, Patience herself who sees and hears all, but is unable to communicate with the people that love her the most.
This is a family that has fallen into following a well trodden path, each of them holding their true feelings close to the chest, coping in their own (often unhealthy) ways, but things come to a head when Patience is offered the chance to take part in an experimental gene-therapy trial that might just offer a cure for Rett Syndrome - or just might make her condition far worse. The family face an impossible dilemma in deciding whether the risks are worth taking to give Patience the chance of a 'normal life', whatever that is? And it is a dilemma that serves to draw battle lines between Louise and Pete - Louise is all for the trial and the benefits to Patience that it might bring, and Pete is firmly against, believing his daughter is content with her life and they should accept that this is who she is meant to be. In the middle stands Eliza, who must make the final decision on Patience's behalf as her advocate. If only Patience could tell her what she wants... or can she?
"They feel all the love given to them. They have a great sensitivity for love. I am sure of this. There are many mysteries, and one of them is the girls' eyes. I tell all the parents to look at their eyes. The eyes are talking to them. I am sure the girls understand everything, but they can do nothing with the information."Professor Andreas Rett
Patience is an incredible debut novel by Victoria Scott, inspired by her own sister Clare, who suffers from Rett Syndrome. It is story full of love, but it does not shy away from addressing painful topics in connection with debilitating illness and the hard knocks life can throw at you - or giving an intriguing insight into medical ethics, and problems with the care system.
The story is told from the points of view of each of the Willow family members and Scott tells their tales honestly and with real sensitivity and feeling, delving deep into how Patience's illness has affected them, their outlook on life, and their relationships with each other. For Louise and Pete the strain on their marriage is obvious, even before the subject of the gene therapy trial comes between them, and for Eliza the weight of expectation she feels has been placed upon her to be all the things Patience cannot be is bringing her to the brink of a breakdown - especially since she has her own relationship problems that she feels unable to share with her parents.
But what makes this story so wonderful is the way Scott puts Patience front and centre throughout. Patience's narrative is the only one told in first person, bringing her vividly alive. As readers, we are the only ones who come to know the person she really is: trapped inside a body that refuses to do her bidding, it is clear she has a rich and engaging personality, with a great sense of humour, and genuine perceptiveness and understanding about the feelings of those around her - particularly since they all have a habit of confiding in her, believing she has no idea what they are telling her. And she loves Take That!
By making Patience a fully-paid-up character Scott is able to delve into a myriad of emotional themes, honestly exploring how they reflect on the lives of them all - the inability to communicate is the central one here, but she also shows their coping strategies, their frustrations, their loneliness, and even they way they acknowledge the sense of loss about the lives they might have led had things been different. Each person here carries their own share of the story, with no bit part players, and even though this tale focuses on the knife-edge dilemma of Patience's future, it is also about the direction and quality of life of every one of the Willow family too.
I have to make a point of saying how much I enjoyed the special relationship between Eliza and Patience in this book. It is the loving bond between them that proves to be the turning point of the course of their story - although I am not going to tell you about the decisions that are made. I think this is where Scott's own experiences really shine through, and it was their moments together that stamped the biggest mark on my heart, and made the tears flow so freely. This is what shapes this book into such a touching tribute from Victoria Scott to her sister Clare, and what makes it such a powerfully affecting read. This is one not to miss, folks!
Patience is available to buy now in hardcover, ebook and audio formats from your favourite book retailer.
Thank you to Head of Zeus for sending me a proof of this book in return for an honest review, and for inviting me to be part of this blog tour.
About the author:
Victoria is a Faber Academy graduate. She has a degree in English from King's College, London and a Postgraduate Diploma in Broadcast Journalism from City University, London. She lives near London with her husband and two children, and works as a freelance journalist, media trainer and journalism tutor.
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