Every Note Played

Every Note Played by Lisa Genova

     Lisa Genova has the expertise as a neuroscientist and the ability as a writer to take us behind the scenes and deeply into some of the scariest neurological diseases we can imagine.  Alzheimer’s, Huntingtons, brain injury, autism and now ALS.  It’s hard to imagine that each book can describe a world scarier than the last but it’s not hard to look in the mirror and say, “Thank you, God!” for sparing us.

      Richard is a concert pianist who loves that the world pays homage to his ability, his talent, to bring them to tears with his playing.  Concert halls are filled with people paying attention to him.  He’s travelled the world, affaired with many women, and it’s all good. Except when it isn’t.

     During a performance he notices his right hand isn’t quite there, not quite obeying. His hands are his life. But now, too, so is ALS.

     It doesn’t take much time for the disease to progress to the point he loses the use of both arms and he needs help. Without close family his ex-wife Karina volunteers to bring him back into her home and care for him.  The disease progresses and takes Richard’s muscle control away from him. He can’t lift his hands, then walk, swallow, then hold his head up, then breathe and the author takes us through these losses one by one by one until we are quite sure it can’t get any worse. And then it does.

     Richard is in denial even as each stage takes something else away from him.  Karina is the primary caretaker, with paid help for the heavy lifting, and not sure why she is doing this for him and neither does their daughter, Grace, who sided with Karina in the divorce. There was plenty of blame on both sides for their divorce and we do come to know what happened but it really seems not important anymore. And yet, it IS important because soon Richard will be gone and here’s Karina caring for him, again giving, giving, giving to Richard.  Guilt is powerful and a hard thing to live with and all through this book I saw Karina’s decision to care for Richard as answering to guilt. Penance for her part in their life together.

     There is no cure for this disease, there is just technology that makes living possible with machines. An ALS patient still has their brain and it still works and so that’s life, right? The patient can still participate if they ultimately have an eyebrow to raise or lower.  So that’s life, right?

     There is only one outcome for ALS so what does the patient do when they need constant and permanent, expensive care?  Richard and Karina aren’t elderly, they are just 45 years old. Ultimately, Richard and Karina are faced with this decision. It really is Richard’s decision to make but what he decides will affect Karina 100%.  So, what is life?  What is living? What would we do? 

     I talked to three friends about this book since I finished reading it because we are all familiar with Lisa Genova’s book Still Alice and we all say that Alzheimer’s scares us to death.  Is it scarier to be realtively healthy and NOT have your brain or have your brain and be completely helpless in every other way? And when is life not living?  To be or not to be - these are things that can only be answered by each one of us.