July is #DisabilityPrideMonth which, dispiritingly but not unexpectedly, doesn’t get quite the attention in the media it deserves.
To mark the month, I read two very different memoirs, both of which explore the experiences of living with life-changing and life-ending disabilities. Both are written from very different perspectives and in very different styles, but both emphasise the power of the human spirit and the expansive nature of love.
It’s Not Yet Dark by Simon Fitzmaurice
In 2008 Simon Fitzmaurice appeared to have it all. A fledgling filmmaker, he had just had his second short film accepted to Sundance. He was renovating a beautiful house in the country with his wife, the writer Ruth Fitzmaurice, who was pregnant with their second child. While in Utah at the screening of his film, he developed a nagging pain in his foot and following a series of tests was diagnosed with Motor Neurone Disease and given three to four years to live. He was 34. In 2010, Simon’s lungs collapsed and against the advice of doctors, he was home ventilated and lived for another seven years. During that time, despite the loss of almost all motor function, he embraced innovative technology, which allowed him to complete his feature length film My Name is Emily, have three more children and write this astonishing memoir.
I’ve lost so much. And yet I’m still here.
I feel everything. The slightest feather touch anywhere on my body. And my heart is alive. To meaning. To value. To love. Which is all it’s ever been about.
Written using an eye-gaze computer, It’s Not Yet Dark is a moving and unapologetic account of living with a disease that you know will end your life. Yet, ironically, Fitzmaurice does not allow MND to define him. He writes of his childhood, his teenage years, now he met his wife and his enduring love of film, particularly Wim Wender’s Wings of Desire. He also writes vividly of the toll that MND takes on his body, realising all the ‘last times’ that he has experienced – the last time he danced with Ruth, the last time he walked on his own, the last time he drank a cup of coffee and heartbreakingly, the last time he held his son.
It’s tough to read, but necessarily so, yet Fitzmaurice doesn’t wallow. He is clear-eyed when describing the consultant who effectively tells him that he would be better off dying than opting for home ventilation or when he talks about the difficulty of being seen no longer as a man, but as a man in a wheelchair. Yet mostly he details the moments of happiness that carry him on and through, mostly centred around his family and his love of art, and he creates a fierce and tender manifesto for living, for the strength of will and for the simple power or hope against all the odds.
When I die, don’t say, Simon loved films, say, Simon had as much love in him as blood. That’s all.
It’s Not Yet Dark was made into a documentary the year before Simon Fitzmaurice’s death and is narrated by Colin Farrell and his wife Ruth has also written a beautiful memoir entitled I Found My Tribe.
I Live A Life Like Yours by Jan Grue , translated by B.L Crook
I Live A Life Like Yours is less urgent than It’s Not Yet Dark, but is no less affecting. When he was 3 years old, Norwegian writer Grue was diagnosed with spinal muscular atrophy, a degenerative disease that compromised his ability to walk, requiring him to use a wheelchair, with the prognosis that his condition would only get worse and drastically shorten his life. In this frank and thoughtful memoir, Grue reflects on disability, identity, and difference, by drawing on philosophy and literature to examine what it means to be different in this world. Blessed with parents who were determined to allow their son to flourish, Grue examines his path to academia, a successful writing career and life as a husband and father.
I would like to think myself away from my body, away from my injured, worn ankles. But there is no me that exists apart from this body, in some unmarked form. That body would have lived an entirely different sort of life.
What hits home the most about this book, is the marginalisation that Grue experiences throughout his life and how society really doesn’t cater for anyone with a physical difference. He notes that two-thirds of most cities are inaccessible to him. An avid traveller, he is often treated with indifference, or outright disdain by transport staff. His attempts to secure accommodation for a year studying in Berkeley have a Kafka-esque quality to them and would be amusing if his experience wasn’t so frustrating. Worse still, he is unable to be present for the birth of his son because the hospital cannot source a protective covering for his wheelchair.
Yet, like Simon Fitzmaurice, this is no pity party. I Live a Life Like Yours is not simply an account of the trials Grue has had to face, nor is it a jaunty redemptive tale of a life lived to the full against the odds. It is a discreet, fiercely intelligent and self-aware appraisal of what it means to be physically disabled and denied a ‘normal’ life. Through an examination of his childhood medical records and his the obstacles he has since overcome, Grue fashions a thoughtful mediation on what makes us human, and like Fitzmaurice, what that is centred upon is love, hope and an indomitable will.
I am a 40 something book buying addict trying to reduce the backlog one book at a time!