Review by Veronica Tomasic.
“For me, it’s not about how long you live but about how you live” (83).
In end-of-life discussions, we sometimes let our personal ideas about “quality-of-life” and “suffering” dictate when considering whether a patient should forgo medical treatment and begin hospice care. Reading It’s Not Yet Dark (Houghton Mifflin Harcourt, 2017) may challenge the reader to re-evaluate her or his thoughts on these matters. Written by Simon Fitzmaurice, the Irish filmmaker, the book is a portrayal of his life before a diagnosis of amyotrophic lateral sclerosis (ALS), and after. Importantly, it is an account of his tremendous desire to live and to experience living as fully as possible, despite the limitations imposed on him by his body.
Fitzmaurice was from a large, happy, and supportive family. He was married the love of his life, Ruth, and was just beginning to have success as a filmmaker when he noticed that his foot went limp at times. Because he had been climbing in the Himalayas, he assumed the problem was the result of climbing with shoes that had no support. He asked a shoe salesman about it — the concerned look in his eyes was Fitzmaurice’s first intimation that something profoundly life-changing lay ahead for him.
Fitzmaurice was thirty-four years old when a neurologist diagnosed the disease and told him that he had three to four years to live. Gradually, he became confined to a wheelchair and eventually he lost the use of his arms and his ability to breathe on his own. In Ireland at the time, ALS patients were not routinely ventilated. One physician advised him that only two, very wealthy people had been able to afford home ventilators. Another physician asked why he would want to ventilate, since he was “only going to get worse” (83). Rather than accept the physicians’ suggestion that Fitzmaurice, essentially, prepare to die, his family rallied and discovered that the Irish health services would in fact pay for a home ventilator. He was subsequently outfitted not only with a ventilator that enabled him to live at home, but also with computer eye-gaze technology that allowed him to write, drive his wheelchair, email, and even direct his films. He lived until October of 2017, nine years after he was first diagnosed with ALS.
Fitzmaurice does not recount his life story before and after his diagnosis in a traditional chronological narrative. Instead, he describes his past in a series of seemingly random memories and impressions. As a young man, Peter Weir’s Dead Poets Society had been the film that inspired him, with its English literature teacher’s rallying cry to his students to “carpe diem” — seize the day. This was the spirit with which Fitzmaurice lived before his diagnosis. We read about the jobs that revealed life in its myriad aspects to him, the girls he had crushes on and kissed, the trips he took with money he had earned at summer jobs, his burgeoning career as a filmmaker. His youthful passion for life becomes his post-diagnosis determination to continue to fully experience living, even as his body fails him.
The title of the book, It’s Not Yet Dark, derives from the title of the penultimate chapter of the book, and refers of course to the fact that Fitzmaurice is still alive when it ends. He weaves throughout his account a theme of a thin and fragile line: the thin line between life and death, physicality and physical limitation, creativity and inability, before and after knowing his diagnosis. In his case, the thin line between light and darkness, or death, is as fragile as having a functioning machine that enables him to breath. I was struck by the similarity of his book’s title with the title of Bob Dylan’s hauntingly beautiful song, “Not Dark Yet.” But Dylan’s ballad is a testament to the disappointments and pain of living. Like Jean-Dominique Bauby’s The Diving Bell and the Butterfly, another intensely creative man’s testament to his need to express himself despite having a body that does not function, It’s Not Yet Dark’s focus is on the joys of a fully lived life and the drive that allows the author to continue it.
Anyone contemplating entering the medical profession or medical professionals, anyone interested in end-of-life studies or in the creative life, would benefit from and be moved by this book.
Veronica Tomasic (PhD, JD) practices community law in the New Haven, CT, area. She is a scholar of literature, painting, psychoanalytic theory, and end-of-life issues.