Joe is a Boston cop who learns he has Huntington's Disease, a hereditary disease that can be passed on to his children. This is how they deal with it.

 

I enjoyed this story. While the disease is serious, there is humor here as well. Joe and Rosie, his wife, do their best to raise their children to be responsible adults but there are bumps along the way. The family works together to learn about this disease and the aftermath of it. The kids do their best to help but they have to live their lives and make decisions made more difficult by Huntington's. I really like Katie, their youngest. She seems more involved than the rest of the kids.

 

Joe also thinks back on his mother and realizes what he was told and what he believed about her were not true and he has to reorganize his thoughts about her. His memories come as he works out his truth about her.

 

Skipp Sudduth does a fantastic job narrating this book. I felt like I was there in that home and family. I want to get more of his narrations. I also want to read more of Lisa Genova. She makes you feel that you are part of the story.

 

Every Note Played, Lisa Genova, author; Dennis Boutsikaris, Dagmara Dominczyk, narrators

This is a brilliant book about a devastating illness. It is about relationships that sometimes grow destructive and about the effort to move beyond that pain and suffering. It is about the healing or inability to heal, emotionally and physically, of all those involved.

When the book begins, the reader learns that Richard, a celebrated concert pianist, and Karina, a piano teacher, are divorced. They have one child, Grace, who is in her first year of college. Her relationship with her father, however, has been non-existent for more than a year since her devotion lies on the side of her mother when it comes to the reasons that ended their marriage.

When Karina discovers that her ex-husband, Richard, has cancelled his concert tour, at first she believes it is a publicity stunt. Richard is a self-important man, however, she visits him and learns that he is indeed suffering from a very debilitating illness which has robbed him of his ability to play the piano and will slowly deprive him of all his bodily functions, although his mind will remain alert until his inevitable death. Who will tell Grace?

Perhaps because the author is in the medical field, she was able to write a clinical, descriptive narrative that will take the reader into the characters’ lives as they work through this dreadful news. She has managed to draw a picture of the gradual degradation of this illness and at the same time to create a love story which illustrates great courage and endurance, devotion and loyalty. The characters will rise to the occasion as the occasion warrants as all different types of relationships are explored and examined minutely. The book not only describes the involuntary breakdown of the body, it also illuminates the way couples voluntarily cause the breakdown of their own relationships with secrets and lies. The need to be right overtakes the need to do what is right. As the characters relate to each other, sibling to sibling, husband to wife, parent to child, doctor to patient, a wide variety of emotions and reactions are illustrated.

Although both Richard and Karina profess to hate each other, his enormous need and the lack of finances to engage full time care, forces them back together again. Karina volunteers to care for him and becomes his major caregiver. It is often a thankless, time consuming, emotionally draining and physically exhausting job, a job that is not pretty. As Richard’s disease advances, and as he grows more and more paralyzed, Karina is required to maintain his body and his appearance in all its phases of failure. Richard, on the other hand, has little to do, but he has much time to think. He begins to realize what he has given up by living the life of a rogue, cheating and traveling and neglecting his family, always putting his own needs first. Karina realizes that he was not completely in the wrong, and that she bears a great share of the burden of guilt. She was not honest with him and betrayed him in serious ways. However, she did give up her career as a jazz pianist, for his career, moving to Boston from New York City for him. He has played piano for audiences on many of the great stages of the world, and so her resentment and anger grew steadily as years passed and she no longer followed her own dream.

As the author traces the awful decline of Richard’s body, while his mind remains always alert, she makes the reader bear witness to the steady erosion of his independence and arrogance. With the loss of mobility, he rethinks his past decisions and the accomplishments and shortcomings of his brief life, although he is unable to verbalize these thoughts. He reminisces about his life with his mother and his siblings and with the father who rejected him for not being manly enough. Karina, a Polish immigrant, rethinks her deceptions and realizes her guilt. She remembers her mother. She knows that she has been cruel, pretending that she was unable to have more children, but she hoped to have her own career someday, and wanted to stop sacrificing her future for his. Now that he no longer has a future, she realizes that she used her resentment and anger as an excuse. In reality, it was her flight from success, not Richard’s race toward success that caused her to make her decisions.

I am not sure that this book is for everyone. It is painful to read, actually, it is a tear-jerker of the first order. Still, I am glad I read it because the author did an excellent job of illustrating what a family goes through when faced with devastating illness in the real world, medically, financially and emotionally. Options are not always available and the hardship is massive. For me, the book was particularly difficult since like one of the men who wrote and directed “Still Alice”, Richard Glatzer, my very dear friend suffered and died from Bulbar ALS, which begins in the neck and throat. Watching her decline and losing her great friendship was difficult for me, but of course, was far more difficult for her. Although she was brave and refused to allow anyone to even discuss the fact that she was ill, as the disease progressed, there was no way to escape from it. I missed the sound of her voice and her easy camaraderie. I thought about the time when she was well, and we would meet at 6AM to walk and talk before she went to work. Bulbar ALS is cruel, and it robs the victim of voice and communication first; our conversations soon stopped. We did email as long as she was able, but soon, even that was impossible and my only contact was with her children who would describe her decline and her anxiety.

Another emotional moment for me, in the book, was the mention of the musical piece, Fur Elise, a favorite of Richard’s. I always loved that piece and another dear friend, from early childhood, who was robbed of life early, always played it for me. So I cried a lot during the reading, and others will surely also identify with many of the emotions exposed. Also, though, as I did, I think readers will begin to better understand the courage and suffering of the victims and the enormous sacrifice of the caregivers. Keep tissues handy when you read this novel, but it is well worth the stress and distress you will experience.

I never really knew a lot about ALS before this book. I had only heard of it - connected to Lou Gehrig and Stephen Hawking. Also, there was an episode on "Suits" about it. I only knew it was a disease that could cause paralysis and death. 

Through this book, I learned a lot more about this dreadful disease and the ways that it takes over your body and what will eventually happen to you. Although the time frame is different for all who have the disease.

This book tells it all through a story about a very egotistical classical pianist who has enjoyed the fortune and fame of being famous. It has definitely gone to his head. All he can think about is himself, music, his piano and other women. He leaves his family, including his daughter, who he has left right alongside his wife.

An eye opening, very sad story about ALS, divorce and family.

I recall my first tear while reading this book. It was near the beginning of the book, when the pianist discovered his plight. This one phrase "Could that be the last embrace of his life?" really hit me hard.

Excellent read!

Thanks to Gallery, Threshold and Pocket Books and Net Galley for providing me with a free e-galley in exchange for an honest, unbiased review.

I think this book will be one of my best reads for 2018. It is a very quick read, but it is likely you will experience a post-reading haunting. It will stay with you.

We all know what the outcome is for ALS sufferers, but Genova takes us on a journey traversing not just the passage of an illness, but also that of a relationship.

With ALS, you don’t have the opportunity of a ‘do-over’. So if you want to make it right then you have to enter the realm of acceptance, forgiveness and taking responsibility. Genova paints a beautiful picture of a family clumsily navigating this and facing up to all their daft decisions made at a time when they thought there was plenty of it left.

In making the telling of the passage of ALS so heartbreakingly real, she beautifully skewers the whole concept of ‘fighting’ degenerative diseases and shows that the real fight is with ourselves to ensure we live well right to the end.

This is a truly wonderful book.