IT’S NOT YET DARK

Simon Fitzmaurice

A luminous memoir and #1 bestseller upon its release in Ireland, a young filmmaker gives us “a story of courage, of heart, of coming back for more, of love and struggle and the power of both” (Joseph O’Connor).

In 2008, Simon Fitzmaurice was diagnosed with ALS, or Lou Gehrig’s disease. He was given four years to live. In 2010, in a state of lung-function collapse, Simon knew with crystal clarity that now was not his time to die. Against all prevailing medical opinion, he chose to ventilate in order to stay alive.

In It’s Not Yet Dark,

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A luminous memoir and #1 bestseller upon its release in Ireland, a young filmmaker gives us “a story of courage, of heart, of coming back for more, of love and struggle and the power of both” (Joseph O’Connor).

In 2008, Simon Fitzmaurice was diagnosed with ALS, or Lou Gehrig’s disease. He was given four years to live. In 2010, in a state of lung-function collapse, Simon knew with crystal clarity that now was not his time to die. Against all prevailing medical opinion, he chose to ventilate in order to stay alive.

In It’s Not Yet Dark, the young filmmaker, a husband and father of five small children, draws us deeply into his inner world. Told in simply expressed and beautifully stark prose, it is an astonishing journey into a life that, though brutally compromised, is lived more fully than most, revealing at its core the potent power love has to carry us through the days.

Written using an eye-gaze computer, It’s Not Yet Dark is an unforgettable book about relationships and family, about what connects and separates us as people, and, ultimately, about what it means to be alive.

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  • Houghton Mifflin Harcourt
  • Hardcover
  • August 2017
  • 176 Pages
  • 9781328916716

Buy the Book

$23.00

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About Simon Fitzmaurice

Simon Fitzmaurice is an award-winning writer and film director. His films have screened at film festivals all over the world and won prizes at home and abroad. His short film The Sound of People was selected to screen at the prestigious Sundance Film Festival. His first feature film, My Name Is Emily, was just released in both the UK and the United States. He lives in Greystones with his wife, their five children, and their basset hound.

Praise

“Beautifully written. Utterly life-affirming.”Alan Rickman

“Sparsely and beautifully written…the human spirit and will to live shines out of these pages…By the time you reach the end of this book, with tears of admiration, sadness and frustration in your eyes, the question is no longer why would you want to live…but how could you not.”Irish Independent

Discussion Questions

1. “It’s not important that you know everything about where I come from. About who I am. It’s not important you know everything about ALS, about the specifics of the disease, about what it’s like to have it. It’s only important that you remember that behind every disease is a person. Remember that and you have everything you need to travel through my country.” (92) How do these “directions” from Simon affect how you think about him and his situation? How might they change how you interact with people who are ill?

2. “Society is predicated on the idea that we all have the same wants and needs. But that’s only when you reduce us to the same. What’s different about us is just as important. The mystery of each of us.” (100) Why does he think people’s differences are so wonderful and important? Simon writes about his discouragement with the health care system deciding what is right for all people with ALS. How does that frustration relate to this quote?

3. Simon and his family struggle with the varied support they receive within the healthcare system. He believes if he did not have his family as advocates, he would have had a less positive experience too. Why does the role of healthcare affect Simon and patients with ALS in Ireland differently from other countries? What factors do you think influence the different rules and structure of this system? How could the system approach and accommodate people’s differences?

4. Alan Rickman said It’s Not Yet Dark is “beautifully written” and “utterly life-affirming.” Did you find this to be true? Given the subject matter, did you have any concerns or expectations for how you would feel reading the book? After finishing it, were your expectations accurate?

5. Simon does not spend much time sharing his frustration or depression from ALS. On pages 110-111 he provides a brief glimpse at the sadness he feels at times. How did you feel reading this section? How does he turn even this sadness into something positive?

6. What does Simon mean by “seeing yourself” on page 111? How do you think his lifestyle and having ALS might allow him to understand or see himself differently from others?

7. The idea of choice is so important in this book. On page 151, Simon explains: “I can let this life crush me. Bearing down on me until I am dead. Or I can bear the weight. And live…I must decide. To live or die.” On page 156, he says, “But we don’t choose what moves us, what drives us. It chooses us. Just like ALS chose me. You are what you are. It’s up to you what you choose to do about it.” How do you think Simon’s life has effected how he considers his choices? Is his understanding of choice similar to your own?

8. “I’m a filmmaker. A Writer and director. And once you find out what it is that moves and shakes you, you don’t want to do or be anything else” (155) How does the ability to still be a filmmaker help Simon live? How does it change the type of filmmaker he has become?

9. On page 156, Simon describes the moments when he and Ruth realize the “strangeness” of their lives, but then any sadness passes, and they return to their new lives. What does this say about Simon and Ruth, and also about the resiliency of people to adapt in order to live?

10. “There is a certain sickness to always wanting a happy ending, if the desire for it is driven by a fear of seeing things as they are… But there is another impulse, much deeper than fear. The will to live…To not give up.” (160) Do you agree with Simon? Is this specific to Simon’s story or is it a common story?

11. What is the importance of the title appearing on page 161? How does it connect to the overall book?

12. Simon’s writing is poetic at times and direct at others. The structure is linear at times and at other times pieced together. What was your reaction to the different writing styles and structure? How do they relate to story and its message?

13. Share a sentence or scene or moment that stood out to you while you were reading. Why was it so important to you?