Every Note Played

A big thanks to Netgalley for providing me with a copy of Lisa Genova's newest novel set to be released in the next couple of months.

Lisa Genova is one of my favourite authors and I have read all of her other works. I love the empathy and care she takes in crafting her stories and I love her determination to allow readers to emotionally engage with difficult topics in life.

This book focuses on our main characters, Richard and Karina, who are divorced. The story is about Richard, a world famous pianist, who is diagnosed with ALS (Amyotrophic lateral sclerosis) which is a form of motor neurone disease. You can read more about ALS here.
https://www.medicalnewstoday.com/articles/281472.php

The story revolves around the shifting dynamic of both Richard and Karina's life and the lives of individuals around them, as they have to adapt to Richard's diagnosis and condition.

Personally, having read Genova's novels, reading the author's note for this book and reading about the work she has done in the medical field, I believe she has done the best job she can in telling this story. It is a story about human endurance, passion and how life can change in an instant.

I hope everyone takes something from this novel. It had a real focus on forgiveness and on a renewed or changed perspective on life and what we prioritise.

I highly recommend this novel, especially if you have read Lisa Genova's other works such as Still Alice. It is emotional, carefully created and sensitive to the content it explores.

I'm a big fan of Lisa Genova, with her books 'Still Alice' and 'Inside the O'Briens' being two of my favourite books, so I was very much looking forward, but also a bit wary, to read 'Every Note Played'. I'm pleased to say I wasn't disappointed!

'Every Note Played' follows, Richard, a successful, world renowned, classical pianist and his demise after receiving a diagnosis of ALS. We also see the effects of his diagnosis on his ex-wife, Karina, and daughter, Grace.

Lisa Genova has an amazing ability of combining her scientific knowledge with her beautiful writing, resulting in outstanding novels. In Every Note Played, she doesn't hold back in describing this debilitating disease making the story so much more authentic. Not only does she impart her extensive knowledge of ALS but also her grasp of classical and jazz piano. She had me hooked from the very first page with lines like 'Location matters in destiny as much as it does in real estate' and a very apt one later in the book 'Every note played has a beginning and an ending'. An absolutely wonderful book which will open your eyes to the devastating world of ALS. A must read. Genova's TED talk is also worth watching.

This was such a sad book, but it was told so well. I read it within a few days, and even after I finished it, I kept thinking of the book. I made a donation to MND Australia as I felt compelled to help in some small way.
I thought that this was a brilliant book. Lisa brings characters to life so well; I felt so sorry for Richard and for his family too.
A simply beautiful novel that I won't forget in a hurry

Thanks to #Netgalley for giving me the chance to read this amazing story. If you have read any of Lisa Genova’s books you will know she picks a medical condition that is often misunderstood and equally tragic as it at times can be uplifting. Still Alice is perhaps her most well known story as it was made into a movie, but this book moved me to tears.
Richard is a world famous concert pianist. When he starts having trouble with his fingers whilst playing he is sent for tests which confirm he has ALS, a debilitating condition that leads to the paralysis of muscles and limbs and the outcome is death, usually by asphyxiation. Stephen Hawking one of the very few people who have survived for some length of time. This time frame for Richard is around three years. His ex wife ends up moving him in with her to help with his care. The chapters jump forward in increments so his decline is fast moving.
It’s a heart wrenching look at what it is like to have ALS and only a cold hearted person would not cry at the end.

My sister-in-law had MND (that’s the name used in Australia and not ALS). She was an artist who had just opened her own art gallery in a regional Victorian town. While her health hadn’t been very good for a couple of years it was only about 8 months after the opening of the gallery that she found she was unable to continue with it, shortly after that the diagnosis came in - MND!! From then it was only 18 months until she died of this awful and terminal disease. My brother and her son were her main carers but along side professional assistance, the community also rallied to support her and them. Recently my neighbour informed us that he too has MND!

While there are people like Stephen Hawking who survived an long time there are many many more who don’t and die within 5 years of the first symptoms.

This is a dreadful disease and in ‘Every Note Played’ the author Lisa Genova gives incredible details and insight into everything about MND and its impact on the person and the family.

This wasn’t an easy book for me to read but it’s certainly worth everyone reading. The more people who know and have some understanding of this dreadful disease the better. Also importantly is to support the fund raising to find a cure of MND - the organisation in Australia is called FightMND.

A well written and emotionally charged story. Highly recommended.

Thank you to Netgalley and publisher Simon & Schuster (Australia) for an ARC ebook to read and review.

I loved Lisa's book Still Alice,and was keen to read her latest offering. Every Note Played tells the story of Richard who, as an acclaimed and successful concert pianist, has always put himself first. His success in his work and life triumphed over everything else including his wife and daughter.
Karina and Richard divorced many years ago, Karina met Richard when they were both studying music, and although it is said that Karina was a better pianist than Richard, they married and she took a back seat for him to go on and be successful. After having their daughter Grace, she felt like a single mother. After Richard's many indiscretions, Karina left and has had little to do with him since.

After Richard's diagnosis of ALS, his health declines at a rapid rate and Karina becomes his carer - something that was not planned, she is resentful to Richard for putting her in this position. She sacrificed everything for him once, and now she is doing it again.

The author's description of this horrific disease was an eye-opener, and something you would not wish upon anyone. She gave a realistic view on a day to day basis of the help required, equipment used and prognosis, which some may find disturbing, but I found quite interesting despite the terminal nature of this disease.

This was a really gripping story and had many aspects therein, the relationship between husband and wife, his relationship with his own father, the relationship between Richard and daughter Grace, and the sacrifices one makes for others. A very powerful and sad book. Makes you think how fortunate you are to have good health. Thank you to Net Galley and Simon & Schuster for the opportunity to review this book.

Imagine being a renowned concert pianist at the peak of your career and losing the use of your hands - first one, then the other. Imagine the slow progression of losing every voluntary movement that you have always taken for granted and becoming increasingly dependent on others for the most intimate of daily tasks. Imagine being unable to eat or even manage your own saliva, being unable to call out when you need help, being unable to tell your child that you love her. Imagine being unable to breathe unassisted. Imagine all of this in a man who is perfectly lucid, knows exactly what is happening to him and what he has lost. A man who has the same needs and desires as he had before the onset of the terrible disease that is ALS, but is becoming increasingly locked inside his failing body. This is the what has happened to Richard. Lisa Genova shares the stories of Richard, his ex-wife, Karina, and their daughter, Grace, providing compassionate insights into the terrifying progression of ALS and the extreme toll it takes, not only the person themselves, but also on their family and carers. Highly recommended. Thanks to Simon and Schuster (Australia) and NetGalley for the ARC.

ALS or MND is an awful relentless disease with gradual creeping paralysis that will eventually lead to death in a short time. If you don't know much about ALS, Lisa Genova has created a very accurate picture of every stage of this horrible disease. Her main character, Richard is a famous concert pianist so loss of the use of his hands and then his arms was particularly devastating. Estranged form his father and brothers and divorced from his wife Karina, Richard had no one to help care for him when his disease advanced to his legs and he had to start using a wheelchair. Reluctantly, Karina offers to take him in and help care for him once he can no manage on his own.

Karina and Richard's marriage started to fall apart when he moved the family from New York to Boston, away from the jazz groups and venues that Karina was starting to get involved with in her developing career. When their daughter Grace was born, Karina instead threw herself into raising their child while Richard travelled the world playing to packed concert halls. However she had always resented his success and her failure to have a career in music and eventually her decision to not have another child and Richard's affairs away from home led to the end of their marriage. Now with Richard dying they have a second chance to look at their shared history and relationship in a kinder light.

There is a lot of very clinical detail about what patients with ALS and their families can expect to experience in this book in that the stages of the disease, the medical equipment and assistance from carers required are all carefully discussed. In some ways this overshadows the personal story here and I felt some emotional distance from what Richard, Karina and their daughter Grace. a college student would be experiencing. However, it is still a powerful well written account a man dying of ALS and his family grappling to find forgiveness and love for this man who put his career ahead of being a good husband or father.

I have had this one for a while now and have been putting it off and off and off because I knew it was going to be a big emotional read. ALS is a merciless incurable disease, and Genova has a history of writing a lot of detail about the personal experience of people suffering from terminal conditions, so I knew that it was going to be heavy. And here I am, minutes after finishing it. Raw. Still processing. With tears streaming down my face. But my gosh it was good!

Richard is a talented concert pianist, a prodigy of classical music. And he has Amyotrophic lateral sclerosis (ALS), which is a form of motor neuron disease. His estranged ex wife Karina reluctantly ends up caring for him as his muscles deteriorate, and he is unable to perform basic tasks of daily living. They both know there is no cure for this condition, and that there is little time left. Will they be able to forgive each other for sins of the past before it is too late?

When I first started reading this, I was a little underwhelmed. I was thinking that it was just going to be a bit of a heavy depressing education session about ALS and a step-by-step description of how Richard is deteriorating and fading away. However, as I kept reading I was soon reminded of why Genova is such a well loved and talented author, as she brought the characters and their relationships to life, and created an overwhelmingly moving story that had me absolutely hooked, and a crying mess by the end!

Although it is heavy in the detail, it is a relatively short book, which considering the subject matter - I appreciated. I was able to read it easily in two short sittings. Of course because it is about a personal experience of someone unable to communicate a lot of the time, there were a lot of the characters thoughts. The inner monologues I found a bit too much in some parts of the novel. Overall though her writing is emotive and captivating, and the characters and their relationships were complex and fascinating.

Another thing I really appreciated about this book is the information about ALS that it will bring to the public. Even though I have looked after several people with the condition over the years, I still didn't have a huge understanding of the way that it affects the body, and just how incredibly  fast it progresses. I learned a lot about ALS from this novel, and am excited that it will bring more attention to it, just like her book Still Alice made a whole lot of people more aware about Alzheimer's disease.

I am well into my second decade of being a nurse now, and I have seen a lot of people pass away. I've held the hands of people as they have had their last breath, and felt soft beating pulses gently stop. Genova's description of this particular time I found profoundly moving, and so realistic.

I also loved the description of the music that was so important to the characters. Richard being a world renound pianist and the loss of the use of his hands made the story all that more devastating and the loss and grief that he was suffering was palpable. The way that the music impacted their lives, and the description of the sounds were written so beautifully.

Would I recommend Every Note Played?
Yes, just like in her previous novel "Still Alice", it brings much needed awareness to a debilitating terminal illness. The story and writing were fantastic. Just have your tissues within reach! I don't usually cry when reading a book but this one had me blubbering!

Many thanks to Simon and Schuster Australia and author Lisa Genova via netgalley for a copy of Every Note Played for me to read and review, and to soak my kindle with my tears!