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Synopsis

The book “It’s Not Yet Dark” by Simon Fitzmaurice is a memoir in which he depicts his path through ALS, a progressive disease that affects the nervous system. In the book, the author emphasizes the difficulties and changes that made him feel different, but also portrays his family and friends as key elements that help him fight the disease. His love and dedication for writing and film-editing provides hope and something to look forward to. Simon was able to write with an eye-gazing computer and he described this technology as an incredible method for communication. It is also expressed in the book how other patients with ALS should also have the opportunity to live and be provided with the necessary aid. Finally, his optimism allowed him to live a long happy life by his family’s side.

About the Author

• Simon Fitzmaurice was an Irish filmmaker
• Born in 1973
• Died at age 43 in October 2017.
• Known for his book "Its Not Yet Dark" and Film "My Name is Emily"

Awards

Number 1 best seller in Ireland at the time

Themes

• Hope
• Perseverance
• Illness and Disease
• Family
• Desire to Live
• Optimism
• Love

Characters

Simon Fitzmaurice is the author of this book, and throughout the book describes his journey with ALS. Ruth Fitzmaurice is the wife of Simon Fitzmaurice and is by Simon’s side throughout his journey from they very beginning to the end. Together they have five children. Some other characters that come up through the novel include: Shoe Salesman, doctors, nurses who he grows close with at his time in the hospital and who he becomes dependent on as ALS begins to take more of a toll on his body, his friends (Phil), Sister Kate, parents, uncle Bobby.

Background

The author of this book and the main character in the book, Simon Fitzmaurice, wrote this book through the use of eye-gazing technology. This is an autobiographical memoir about Fitzmaurice’s battle with amyotrophic lateral sclerosis (ALS). It’s Not yet dark was released in 2014 and was the #1 best seller in Ireland at the time. The film adaptation was then released in 2016.

Summary

The author begins the book with the chapter called “The Brave” in which he describes himself as an outsider and a different breed. The comparison between Simon and the rest of the people show how his identity shifted once he was diagnosed with ALS. It is also explained how individuals on the streets were afraid of him which they try to avoid. The second chapter “Holding my Breath” shifts the pessimistic view into the challenges and new opportunities that are offered to Simon, such as screening his new film which he is nervous about. Here, it is also shown the first symptom of the disease, the foot drop. While trying to search for better shoes at a store, Simon started to worry when the shoe salesman told him that he had never seen something like his experience, causing his stomach to twinge in fear. In the following chapters, Simon explains how he met Ruth and the impact that she had in his life. Descriptions such as dates, traveling and working together are shown as the loved ones continue with their lives, without knowing what’s yet to come. When they both go to New York to work on the films, Simon decides to propose to Ruth at the top of the Empire State Building and she said yes.

After the marriage, they move to a house in Greystones and a few months after, their first son, Jack, is born after difficulties with his breathing and the mother’s pain. Then, their second son, Raife is born, but this time the process was smoother. The house is then sold so that the couple can focus on film and writing. While setting up the new house and painting, Simon starts to develop other symptoms such as arm weakness. While Simon is at a party, he calls his mother and tells her that his foot is hurting and without much worrying, he return to town. Ruth has a miscarriage and it causes to couple to feel devastated. Simon goes to a neurologist for tests and he hopes that the procedure hurts, but regrets during the painful experience of inserting long needles into the nerves. Simon starts worrying about death and he feels lonely since he is expecting unfortunate news. While at a restaurant, Ruth starts crying and tells him that they are expecting their third child. The news bring him happiness and hope, he states that he is happy and where he wants to be with the people he loves. Death is now portrayed as his companion since there is nothing he can do to prevent it.

As the disease starts to progress, Simon notices how distances are longer than he thought since it took more effort than before. The battle between life and death is shown as Simon tries to fight the disease, but it keeps progressing and leaving him helpless. Ruth decides to take her family to Australia and Simon is placed on a wheelchair. This trip was planned for six weeks but ends up being for six months. Simon states how the experience was incredible and made him cope with the illness. During this trip he realizes his two choices, one, accept that he has ALS or two, give up. Simon keeps getting weaker and he cannot even leave the car, he sits in the darkness. He starts to notice similar characteristics on people’s faces as they enter the pizza restaurant and it is human ease, something that he lacks. Distance from his wife and children scares him and so he keeps battling. He is struck with pneumonia in September and the illness starts affecting his breathing so he spends a week at the hospital. The family sells the house in North Cottage and move to Greystones while saying goodbye to their library, studio and trees. Simon starts having breathing trouble again and has a double pneumonia as he goes to the Beacon Hospital.

While at Beacon Hospital, Simon goes into respiratory failure and collapsed unconscious and so he was put on a ventilator. He demonstrates his faith and wants to continue living, but is unable to speak due to the tube. A neurologist visits and asks him why he wants to ventilate if he is unable to move. Simon shows many reasons including his love for his wife, children, family and life in general. He also states how ALS is a killer, but life is also difficult. It is here on this chapter where Simon describes how patients in Ireland are not given a choice about their lives like in other countries. During a snowstorm at Ireland, Simon starts to know the nurses and they help him during this lonely time. His sense of smell is gone and he breathes through his neck, his taste is also disappearing. Simon also eats through a small tube in his stomach that allows liquidy foods. Although he has lost two of his senses, the other three: touch, sight and hearing strengthen. Some family members such as his uncle Bobby and sister Kate visit him frequently, his friend Phil also visits almost daily. After four months at the Hospital, Simon finally is sent to his house on a ventilator, the help and support of the nurses is described as exceptional. The themes are also seen during the film in which Simon portrays his willingless to live and his love for his family as well as for writing and film editing.

Simon finally is able to go home and when he is there he is happy to be back in his house and in his bed. Although he is happy to be home, his health still continues to deteriorate. He is now on a ventilator barely able to speak and his hands are weak. This is when he is introduced to eye-gazing technology. Through this chair that also has a computer attached to it he is able to live daily life to the best of his ability. At this time in his journey with ALS he now has a nurse available day and night. As everyday goes on and life continue out of the hospital, Simon is able to recover and becomes stronger using the eye-gazing technology which he is now completely dependent on.

Four years after receiving the prognosis. he has now beat the odds of the prognosis living past what the doctors told him. He was told that he had three to four years to live and is now past the four-year mark. Simon did not let ALS stop him from being like any other person. He continued to write, as he wrote the nativity play for the local church and he continued having children. Ruth and Simon had five children, and Simon said watching his children be happy brought his writing to life. Six months after their twins Sadie and Hunter were born, Simon admitted himself back into the hospital. With each hospital visit and every obstacle within his journey, Simon learns to appreciate ALS even more. Although he can no longer do the simple things that he used to be able to do with his sons, seeing his family happy makes him happy. Simon continues to express himself through his fighting and claims that his writing is his way of fighting.

Simon now begins to reflect on his life, because he likes to see how far he has come. Since before being diagnosed with ALS, Simon always referred to poetry as a form of expression and therapy. Simon wrote about his pain in his poem and only showed his poetry to one friend. The older he gets the more his poetry changes. He no longer chooses to write about his pain, rather the joy and love that surrounds him. Simon also mentions his job at a local video shop and how he watched a movie every day after work. At the University College Dublin where Simon goes to study English, he makes his real group of friends. He then fails his second year of college. Simon now studied constantly in order to pass his repeat exams. He then goes back to school and finishes in his third year with honors.

Once Simon is done with school, he moves to Germany. He now has a new job at a factory and runs into the girl he loved at the age of fourteen. He then has his first job in Germany which is him standing in front of a wall while it is being knocked won from the other side. He then experiences a very traumatizing work day as he almost killed a girl and when explain this to his friends, no one understood him. He then is accepted into a graduate program at the same university he completed his undergraduate education and goes back to school. Before he knows it, he has graduated from the graduate program and is going Edinburgh with a friend. In Edinburgh, he gets a job as a dishwasher. With the first paycheck he earns he buys the biggest dictionary her could get. He then starts school once again to become a qualified secondary school teacher to teach English. In the summers he spends his time travelling and writing.

He then continues his career as a teacher in Ukraine for a year. Before he goes back home he made a trip to France where he met up with his friends. Once Simon got back home, he met the love of his life and his future wife, Ruth. Simon is now back to reality and is no longer looking back on his life. Although Simon can no longer do simple tasks that most humans can he still says that he is still a man. He does not let ALS make him any less of a person than he was before the diagnosis. He can either let ALS take control over him or fight ALS, which is what he decides to do. He now is facing what he describes the hardest things in life which are love and death. He begins to produce films of his writings. Simon then finishes the autobiography by mentioning the last time him in Ruth went to the opera, which is the last time he felt alive. It was in the darkness with the music that he felt a part of humanity and felt the most alive.

Even after his death, Ruth wrote an article about her love towards her husband and admiration. In the article, she states how even after his death, she still believes in magic and buried their wedding delph in the garden. This act of planting allowed her to relieve her pain, she also talks about how he misses him, but their five children still bring home at their home by the sea where it reminds her of Simon.