Affecting memoir by Irish filmmaker/writer Fitzmaurice on living under the death sentence of amyotrophic lateral sclerosis, or Lou Gehrig’s disease.
“I frighten you. I am a totem of fear. Sickness, madness, death. I am a touchstone to be avoided.” Ireland’s No. 1 bestseller on its 2014 release, the author’s unblinking look at his life and the devastating illness that overwhelmed him charts a familiar arc of surprise and sorrow, resolution and helplessness. The narrative moves swiftly. We’re just a few pages in when Fitzmaurice, having just learned that one of his films will be screened at Sundance, notices that his foot is flopping. Having injured it while climbing in the Himalayas the year before, he went to buy a pair of running shoes for support only to see the widening eyes of the shoe salesman become “a twinge in my stomach.” Deeply in love with his wife and with a small army of children in the house and on the way (“my willy works. It’s that simple”), he was given only three or four years to live. The disease notwithstanding, he protests, “I am about the healthiest person with ALS you are ever likely to meet.” That the disease follows its own logic did not dissuade him from deciding to live with a ventilator and with technology that allows him to communicate. Though the writing is occasionally facile—“we are orphans of the universe. Our species is defined by asking questions, out into the dark, without anyone to guide us except each other”—Fitzmaurice communicates well, making his own case and advocating for the right of the afflicted to make their own choices in how they will live and die.
A fine and heartfelt memoir from an author hopeful in his determination to endure against the odds: “What remains is desire.”