By Margaret Walker, NPHR Editor
It’s only important that you remember that behind every disease is a person. – Simon Fitzmaurice
Humans are extraordinary creatures, capable of enduring great pain and suffering but also extreme joy and elation. When faced with adversity, individuals will rise to the challenge. Simon Fitzmaurice’s memoir “It’s Not Yet Dark” is a story of perseverance and an unwavering desire to live.
In a style of writing heavy in simple and fragmented sentences akin to poetry, Fitzmaurice describes his journey with amyotrophic lateral sclerosis or ALS, a degenerative neuromuscular disorder that renders its victims motionless and voiceless due to progressive muscle weakness. This book, written with eye-gaze technology, moves quickly and pulls the reader into Fitzmaurice’s head. Jumping around in time, the author sews together a narrative of a creative young man discovering his mysterious and ominous disease while carving out a vibrant and unique life for himself and his family. The jumps in time may leave the reader disoriented, but rest assured, Fitzmaurice will pull him or her back into his story. While many books about death, dying, disease, and disability focus on the medical experience, Fitzmaurice focuses on the more human aspects such as desperation, despair, optimism, and love. In fact, much of the book feels like a love letter to his wife, five children, art, and life.
Beyond his desire to live, Fitzmaurice comments on many interesting and relevant elements of medicine and healing. He details his search for a cure in experimental and alternative therapies. He tries reiki (a form of alternative medicine in which a healer attempts to manipulate energy through their palms towards the patient), clinical trials, and psychotherapy. While none of the experiences cure him, they do help him to feel a bit of acceptance. As an individual living and working outside of the medical field, he frames alternative therapies in such a way that he is both grateful and critical. On the side of modern medicine, he comments on the ethics of ventilation for ALS patients as well as the role of patient autonomy. In Ireland, it is not common practice to place ALS patients on ventilators to extend their lives due to the pervasive thought that a life with ALS is not a life worth living and invasive ventilation is expensive. Instead patients were and are allowed to pass away. Other countries, such as the US allow for more choice (and insurance reimbursement) for home mechanical ventilators. Fitzmaurice had the unique experience of being placed on a ventilator due to an emergency. As he says, “I’m alive by mistake. They gave me my life and I wouldn’t give it up. I believe that everyone should be given that choice.” This sentiment underlines another key theme of the story: personal choice. He chose to stay on the ventilator and continue to live his life. He continued to choose his own path in life that included writing a book and directing films. While one person may not want a life with ALS, another will hold on to every moment; each should be given the right to choose with all of the information.
This book explores the reality of living with a terminal and debilitating disease. It is honest and filled with both little and big moments of sadness and hope. While Fitzmaurice confronts his mortality on a regular basis, he continues to live and express his creativity. He is a strong advocate for ALS patients and others living with disabilities and believes that all people are entitled to the dignity of choice with regards to how they live their life.
A documentary about Simon Fitzmaurice will be released on Netflix in December.
Photos courtesy of Simon Fitzmaurice.