IT TOOK ME 85 minutes to read Irish filmmaker Simon Fitzmaurice’s 165-page memoir of living with ALS. His story was especially powerful because in 2012 our best man Paul died of ALS. It’s Not Yet Dark reminds us all that a death sentence can teach a person to live.
ALS, a motor neuron disease also known as Lou Gehrig’s Disease, is the gradual loss of all muscle control. What does it feel like to get that diagnosis? Fitzmaurice describes the moment. “Light leaves the room. And air. And sound. And time. I sit on the chair opposite but I am far away. Deep inside. Looking up through a tunnel of myself, as he speaks on past those words. “Three to four years to live.’
Years later, when medical personnel want to pull Fitzmaurice’s ventilator, he fights to live and to breathe and ultimately—survive. He fathers twins, writes, and direct movies with the use of the Tobii eye gaze computer which translates eye movement into words and audio. His film “My Name is Emily” opened in 2017. (Film buffs may remember his award-winning “Full Circle” or his 2008 “The Sound of People”). His memoir, now a documentary narrated by Colin Farrell, will be released in theaters August 2017 and Netflix in December.
It’s Not Yet Dark is also the love story of Simon and his wife Ruth broken up into bite size moments of remembrances. The end of the novel retraces Simon’s childhood and teen years (this part was confusing and unnecessary at times). And though the first-person stream of consciousness can result in choppy sentences and bumpy reading, it’s fascinating to get in the head of a man who’s a prisoner in his own body. Though I consider ALS the worst death sentence ever, after listening to him, I realize it does teach you to live. We’re all dying but do we stop and recognize we are living and appreciate every little thing we are able to do? Death brought Fitzmaurice to that realization.
My husband’s best friend Paul died of Lou Gehrig’s Disease. Paul lost motor function from his toes to his head, eventually unable to speak, chew, swallow, or breathe. His wife Laurie was his hands, moving his legs so they wouldn’t cramp, rotating him to prevent bedsores, and scratching the itches he felt but couldn’t relieve. Theirs was another love story as she patiently cared for Paul, explaining, “Each day is a gift.”
Paul only questioned his doctors’ depressed attitude, “I could have been hit by a bus!” he pointed out. Paul was thankful it was sunny and beautiful the one day he got out that week. When a family of little kids dropped by, Paul explained, “They come to cheer me up. They don’t get it that I’ve never had an unhappy day in my life.” Paul made choices to be positive.
ALS also caused Fitzmaurice to make choices. “ALS does not let you rest. It does not let you adapt. It does not give you space. ALS takes and keeps taking. Or rather, I keep losing more and more of my life … I realise that I have a simple choice: I can accept that I have ALS or I can give up. …I realize I have a choice. I can let this life crush me. Bearing down on me until I am dead. Or I can bear the weight. And live. There is no surviving. There is living and dying. There are no gates to this suffering. No liberator will come. I must decide. To live or die.”
Fitzmaurice chose to live again even when others questioned why he would want to ventilate since his condition would only worsen. “To them it is inconceivable that I would want to live. But not for me. For me it’s not about how long you live but about how you live.”
“ALS is a killer. But so is life. Everybody dies. But just because you will die at some point in the future, does that mean you should kill yourself now? For me, they were asking me to commit suicide. Or to endorse euthanasia. I refused.”
Why does a man who cannot eat, drink, walk, talk or breathe without a machine, have such a will to live when so many today do not? I am deeply troubled by the number of teen suicides in Northern Virginia. Where is their hope? What can we learn from a man living with dying?
“I am not a tragedy. I neither want nor need pity. I am full of hope. The word hope and ALS do not go together in this country. Hope is not about looking for a cure to a disease. Hope is a way of living. We often think we are entitled to a long and fruitful Coca-Cola life. But life is a privilege, not a right. I feel privileged to be alive. That’s hope.”
Spoiler Alert: the memoir and documentary do not end with his death, because after nine years, It’s Not Yet Dark.