Every Note Played: My Review

Every Note Played

About the Book:

An accomplished concert pianist, Richard received standing ovations from audiences all over the world in awe of his rare combination of emotional resonance and flawless technique. Every finger of his hands was a finely calibrated instrument, dancing across the keys and striking each note with exacting precision. That was eight months ago.

Richard now has ALS, and his entire right arm is paralyzed. His fingers are impotent, still, devoid of possibility. The loss of his hand feels like a death, a loss of true love, a divorce—his divorce.

He knows his left arm will go next.

Three years ago, Karina removed their framed wedding picture from the living room wall and hung a mirror there instead. But she still hasn’t moved on. Karina is paralyzed by excuses and fear, stuck in an unfulfilling life as a piano teacher, afraid to pursue the path she abandoned as a young woman, blaming Richard and their failed marriage for all of it.

When Richard becomes increasingly paralyzed and is no longer able to live on his own, Karina becomes his reluctant caretaker. As Richard’s muscles, voice, and breath fade, both he and Karina try to reconcile their past before it’s too late.

Poignant and powerful, Every Note Played is a masterful exploration of redemption and what it means to find peace inside of forgiveness.

My Comments:

Last year, my Facebook feed was filled with people doing the "Ice Bucket Challenge"; agreeing to have themselves videoed while pouring ice water on themselves, in exchange for donations for ALS research.  Here in New Orleans a local hero is Steve Gleason, a former player for the Saints, who has lived with ALS since 2011.  Both this book and the story of Steve Gleason's life make it clear that ALS is one nasty disease. 

When Richard is first diagnosed, as many people do, he went through a "denial" stage--his disease would progress slowly, he would manage to be independent, he wouldn't lose his voice but  the losses came anyway.

Richard and Karina had divorced and of course each was well aware of what the other had done to break trust.  Each was still hurting over the break-up of the marriage but since they weren't the one at fault, neither could really move past it either.  Marriage vows are taken "for better for worse, in sickness and in health" and while Richard and Karina were not able to live those vows while healthy, Karina was able to live them when Richard became ill.  By caring for him through his decline and death, she showed that love is a decision, not just an emotion and, in the end, her love was, in some way, returned.

This book deeply moved me, which is unusual in a book where I really didn't like any of the characters.  Richard was way too self-centered.  Karina struck me as one of those people who just didn't know how to be happy--her problems in life before Richard got sick weren't all that much different or greater than many people's problems but she couldn't just relax, focus on the good and be happy.  Rather she spent her time focusing on what she didn't have and refusing to move on with life.  Their daughter was a rather self-centered college student, but I guess that's pretty par for the course at that age.  I did like the primary home health aid and if there was ever a job that is way underpaid, that's it. 

I'd like to thank the publisher for making a review copy available via NetGalley.  Grade:  A.  

Review: Inside the O'Briens

Inside the O'Briens: A Novel

About the Book:

Joe O’Brien is a forty-four-year-old police officer from the Irish Catholic neighborhood of Charlestown, Massachusetts. A devoted husband, proud father of four children in their twenties, and respected officer, Joe begins experiencing bouts of disorganized thinking, uncharacteristic temper outbursts, and strange, involuntary movements. He initially attributes these episodes to the stress of his job, but as these symptoms worsen, he agrees to see a neurologist and is handed a diagnosis that will change his and his family’s lives forever: Huntington’s Disease.

Huntington’s is a lethal neurodegenerative disease with no treatment and no cure. Each of Joe’s four children has a 50 percent chance of inheriting their father’s disease, and a simple blood test can reveal their genetic fate. While watching her potential future in her father’s escalating symptoms, twenty-one-year-old daughter Katie struggles with the questions this test imposes on her young adult life. Does she want to know? What if she’s gene positive? Can she live with the constant anxiety of not knowing?

As Joe’s symptoms worsen and he’s eventually stripped of his badge and more, Joe struggles to maintain hope and a sense of purpose, while Katie and her siblings must find the courage to either live a life “at risk” or learn their fate.

My Comments:

My dear readers, there is something I have to tell you.  I'm sure some of you have guessed, but for those who haven't, I'm going to come right out and say it:  I'm dying.  I don't know exactly how much time I have left, but my day is coming.  Ok, I'm not dying anymore today than the average woman my age is, but none of us make it out of this world alive, and I don't expect to be the exception.  However, there are people, people who feel fine, people who have no symptoms, who know that they are going to die young and who know what will likely kill them.  They have the gene for Huntington's disease, a genetic, progressive neuromuscular disease that manifests itself to most people when they are in their 40's.  Those of us who do not have parents who had Huntington's do not have to worry (providing our parents are old enough, or lived to be old enough, to have manifested the disease); those who have a parent with Huntington's have a 50% chance of developing the illness.  

This is the story of the O'Brien family.  They are Irish-Catholics who live in the Charleston area of Boston.  Joe O'Brien is a Boston police officer and the father of four adult children.  Gradually, he and his wife, especially his wife, come to the realization that something is wrong.  After being diagnosed with Huntington's Disease, he realizes that his mother, who he had been told was institutionalized due to alcoholism, actually died of Huntington's Disease.  As we follow the O'Brien family through the first years after Joe's diagnosis, we see how this awful disease changes their lives.  The now-adult children have to decide whether to have genetic testing that could reveal whether they will follow in their father's jerky footsteps.  While we learn something about all the family members, the main characters are Joe and his youngest daughter, Katie.

Katie has always felt like she lived in her sister's shadow, but now she has a boyfriend and a job she likes.  She has dreams for the future.  But does she have Huntington's Disease?  Does she want to know?  What difference will knowing make?  Those are the thoughts that run through her mind.  Two of her siblings have chosen to know; one adamantly claims he does not want to know.  She isn't sure. In order to undergo testing, Katie has to visit a genetic counsellor.  The protocol then calls for her to return for another appointment, if she wants the test.  Finally, once the results come in she has to return to the counsellor, who will open the envelope in her presence, and, perhaps, predict the type of death she will die.

While certainly not religious fiction, this was a book about faith.  The O'Briens are Catholic and, unfortunately, not so unlike many Catholic families today.  After baby number four, Joe refused intimacy with his wife until she went on the pill, It took his devout wife several months to give in, but she did give in--and then got a dog that she named Yaz.  She want to Mass regularly; he didn't, and now the kids don't go.  Even in his illness, Joe does not return to Mass, but he does start going to the church after daily Mass and sits in the pew in which he sat as a child.  One day he comes home and finds his wife in despair and sees that she has removed the many religious items from their home, and he convinces her that God is there and cares.

This book had me in tears and praying for families that face this disease.  I don't know what I'd do in Katie's place.  What do you do if the test is positive?  Do you get married?  Have kids?  Seek experiences now since you know you don't have a long future ahead of you?  Wallow in self-pity?  Worry that every forgetful moment, every muscle twitch, every bit of clumsiness is the beginning of the end?

I'd like to thank the publisher for making a review copy available via NetGalley  Grade:  A.  

Love Anthony--My Review

Love Anthony

About the Book:

Olivia Donatelli’s dream of a “normal” life shattered when her son, Anthony, was diagnosed with autism at age three. Understanding the world from his perspective felt bewildering, nearly impossible. He didn’t speak. He hated to be touched. He almost never made eye contact. And just as Olivia was starting to realize that happiness and autism could coexist, Anthony died.

Now she’s alone in a cottage on Nantucket, separated from her husband, desperate to understand the meaning of her son’s short life, when a chance encounter with another woman facing her own loss brings Anthony alive again for Olivia in a most unexpected way.

Beth Ellis’s entire life changed with a simple note: “I’m sleeping with Jimmy.” Fourteen years of marriage. Three beautiful daughters. Yet even before her husband’s affair, she had never felt so alone. Heartbroken, she finds the pieces of the vivacious, creative person she used to be packed away in a box in her attic. For the first time in years, she uncaps her pen, takes a deep breath, and begins to write. The young but exuberant voice that emerges onto the page is a balm to the turmoil within her, a new beginning, and an astonishing bridge back to herself.

In a piercing story about motherhood, autism, and love, New York Times bestselling author Lisa Genova offers us two unforgettable women on the verge of change and the irrepressible young boy whose unique wisdom helps them both find the courage to move on.

My Comments:

My regular readers know that I have an autistic son.   Luckily, my son is verbal, and was a physically affectionate as a young child. However, I have seen many handicapped kids in my day and have given thanks  many times that my problems are not as serious as those kids' parents' problems.  Olivia was not so lucky.  Her son's autism was severe--and then he died, and with him, her marriage, her life as she knew it.  Her divorce settlement called for her to get the Nantucket cottage so she heads there, after tourist season is over, to recover.  

Beth used to write.  She has been a wife and mother for years, but she just learned that her husband was having an affair.  In cleaning out her attic she remembers that she used to write and decided to start again. Somehow she ends up telling Olivia's son's story.  The two women's lives come together and each learns to live, and hope again.

I really enjoyed the story and found the characters to be well developed and the story line a little different.  The ending was hopeful but realistic.   

I'd like to thank the publisher for making a review copy available via Edelweiss.  Grade:  B+