Samantha Wheeler, Everything I’ve Never Said, University of Queensland Press, October 2018, 224 pp., RRP $19.99 (pbk), ISBN 9780702260278
This is a personal story, and although it’s from a place of private family business, author Sam Wheeler never descends into melodrama or sentimentality. Main character Ava is based on Sam’s daughter Charlotte who suffers from Rett Syndrome, a rare genetic brain disorder that predominately affects females, resulting in stagnated growth, and a severe impairment of muscle control, speech and movement.
The narrative is told through Ava’s point of view, and her inability to communicate with her supportive parents, her sometimes hostile older sister, and increasingly inept carers means that we are immediately transported into a world of frustration, invisibility (except when she isn’t) and seemingly insurmountable obstacles. Ava’s voice is just like any other ‘tween. She wants friends, to watch fun movies with them, and wear the colours she likes, and she never stops trying to make her thoughts known. But it’s tough to watch her attempts mostly fail.
Fortunately, finally helps arrives in the shape of Kieran, an inexperienced yet passionate occupational therapist who makes every effort to make positive and significant changes to the quality of Ava’s life. Along the journey to Ava’s increased independence, we also witness a family who has to face other difficulties as well. This strong resilient group of people surprise us, make us laugh, but also ask us to cheer them on through their ups and downs. It’s a story to which anyone can relate because all families suffer crises of many different circumstances—and Sam wants us to know that the most important thing is how we deal with them when they happen to us: with tenacity, and hope and together.
Everything I’ve Never Said is a book that will engender compassion from its readers, and will encourage conversation about diversity and disability and the importance of treating all people with dignity. This is the power of story. Highly recommended for readers aged 10 and older.
Reviewed by Trish Buckley