I have recently discovered Lisa Genova and am a little obsessed with her books!
My first Genova book was Inside the O'Briens which had been on my shelf for at least a year or two and I just finally got to it. The To Be Read (TBR) struggle is real! This book tells the story of the O'Brien family as the father, Joe, begins to show symptoms of Huntington's disease. Each of his four children have a 50% chance of inheriting the disease from their father and each struggle through the ethical dilemma of whether or not to find out through genetic testing. The book is divided into sections and focuses quite a bit on Joe as his symptoms become more and more prominent and he must alter his expectations for himself physically, and his plans for the rest of his life. The other character who is prominent is the youngest daughter Katie. She is 21 and just starting to find herself and make plans in life and whether or not she has Huntington's could have a huge affect on where her life takes her. Her sections really focus on the ethics around genetic testing and both the positives and negatives of finding out what your DNA really holds.
I didn't know very much about Huntington's when I started reading this book and while I'm sure there would be a lot more that I could learn about it, I do feel that this book is an excellent opportunity for readers to learn about a genetic, neurological disorder that may not be commonly spoken about. I love that Lisa Genova is a doctor and that she has the ability to explain these really complex diseases in a way that readers will not only understand, but will form connections with and appreciate the challenges each character faces. I also think that the exploration of genetic testing is a hugely important part of this book and is expertly discussed by Genova through each of her character's own decisions, thought processes and journeys through grief towards acceptance for both themselves and their family members. It reminds us that science and knowledge are powerful gifts, but it really is your choice whether or not you want to open them. I definitely recommend this book!
While still on a high after reading Inside the O'Briens I quickly grabbed a copy of Still Alice. This book tells the story of a 50ish psychology professor at Harvard who is diagnosed with early-onset Alzheimers. When Alice starts to forget the meaning of important things on her to do list and gets disoriented and lost in her own neighbourhood she begins to think that something might be wrong. As she begins the cognitive testing and other elements involved in a diagnosis of Alzheimers, her husband is very much in denial. Alice moves to acceptance quite quickly, but we can see that her husband is not ready for such a huge life change. Much like the O'Briens, Alice's children also decide whether or not to get tested and face similar ethical dilemmas.
Again, Genova does a fantastic job showing all sides of a difficult diagnosis and explains the challenges people with Alzheimers face in a way that makes readers truly connect with the characters. My mom had episodes of dementia, often related to medications or as part of symptom of her primary diagnosis, and this book really made me appreciate how hard it must have been for her and also made me feel for Alice's family members too. It can be frustrating when someone who has always been relatively competent suddenly starts making "silly mistakes" or when you have to remind someone of something for the millionth time and you know they will forget anyway. You can also feel almost an "embarrassed by association" type feeling when you watch them do something unexpected in public. I think that even if I had no connection to Alzheimers I still would have found this book very touching and informative, but having that personal connection definitely made this book so much more than just a good story. I would highly recommend this book!
My next Lisa Genova book was Love Anthony, and while I didn't love it quite as much as the first two of Genova's books I've read, I do think that it was a great book. This one follows two women, Olivia and Beth. Olivia is a recently divorced parent whose 8 year old son passed away. She moves to a small beach house in Nantucket to grieve her son and her failed marriage and find a way to start fresh. Beth is a mother of three (pre)teen girls who is going through a trial separation after finding out her husband cheated on her with a younger woman. Both women are struggling to find their roles in their families and careers and after a few chance encounters discover a common connection that will prove to be very powerful for both of them.
Love Anthony is a little different in that the neurological disease discussed is autism, and none of the characters are grappling directly with their own diagnosis. Olivia's son Anthony was autistic and through journal entries we learn about the challenges this diagnosis and his symptoms caused Olivia and her family, but it was not nearly as prominent as the diagnoses in the first two Genova books I read. Still, Genova did a fantastic job explaining things in a way that non-medical readers can easily understand but that is also interesting and educational! I also love that Genova explores an almost psychic/spiritual/paranormal theme as she connects these two women, without being reality-tv-medium-level weird. It definitely added an element that the other books did not have. I don't think Love Anthony is a front runner for my favourite Genova book, but still a great read!!
I think that Left Neglected is my favourite Genova book so far! It tells the story of a woman named Sarah who works for a prestigious company as the vice president of human resources. She loves her busy life with her husband and three children even though she is constantly scheduling, multitasking and running from one thing to the next leaving her Nanny to watch the soccer games and essentially raise her kids. After a car accident caused by her own distracted driving, Sarah wakes up from a coma to find out she has a traumatic brain injury that has caused a disorder called Left Neglect. Because of the damage to her right side of her brain, she sees and experiences only the right side of things, when someone stands on her left side, when she tries to apply make up, when she needs to do anything with her left hand, the left side of things just doesn't seem to exist.
This book is completely enthralling. It is very easy to get completely sucked in to the story because it is just such an unusual disorder and yet affects (half of) everything she does. One thing that I absolutely love about Genova's books is that she gives readers a full perspective of what it is like to have these neurological disorders. The way that her characters describe their world allows you to fully picture what it would be like and the feelings, frustrations and challenges they experience as if you were experiencing them yourself. It is a really interesting way to learn about a disorder while also feeling completely consumed by the story. I found myself wanting to tell people about this book in random conversations and considering what my life would be like if I couldn't dress myself, drive or even notice things around me. Because Genova created a character who was so independent and successful, this loss of independence is extremely profound and something that anyone, no matter how independent and capable they are, can relate to this loss.
I also really appreciate the elements of disability advocacy within this book. In University one of my courses in inclusive education focused on something called Social Role Valourization (SRV), which means that the roles we fill in our lives affect how we see the world and how we are perceived. For example, prior to the accident Sarah's roles included: mom, wife, VP of HR, Athlete (skier), colleague, boss and other roles she saw as important and part of her identity. After the accident almost all of these roles disappeared, in fact you could almost argue all of them did because she wasn't able to fully perform her normal duties as mother and wife. This is devastating for anyone. Additionally, SRV theory also explains that people with disabilities are often placed in lower valued roles in society as a result of how we perceive them. Some examples you might be familiar with are: group homes for those with cognitive disabilities being decorated with childish characters, job opportunities being only in degrading or unnecessary positions such as "greeter" or "shredder" and assumptions related to someone's abilities without asking. Aside from older adults who gradually have disabilities affect them as they age (going blind, deaf, needing a walker etc in old age) those disabilities are often co-founded with agism and other issues related to the elderly, many other people with disabilities are born with them and thus do not know what it is like to live an abled life. This third category, of people who are disabled by an accident or illness have the opportunity to see the world through both lenses. By writing a story where the main character starts with her own assumptions and negative perspectives of disability, and eventually becomes an advocate for people with physical disabilities, Genova was able to demonstrate the importance of eliminating those assumptions.
I would highly recommend this book for fans of Genova's other books, people with an interest in disability advocacy and anyone looking for a really interesting and gripping story.
Ok so remember how I said "I think that Left Neglected is my favourite Genova book so far"? Well. I was wrong. Every Note Played is the most amazing Genova book by far and also one of my top contenders for favourite book of the year, and (GASP) I almost didn't finish it!
You read that correctly. I had a hard time getting into Every Note Played... I don't think there was a real risk of DNF'ing it, but the thought was there in the back of my mind...but let's deal with the synopsis first.
Every Note Played tells the story of Richard, a famous pianist who learns that he has ALS and that it is progressing very rapidly and about to make some major impacts on his life. The story starts by introducing readers to his ex-wife, Karina, a piano teacher, who is adjusting to both life as a single woman and an empty nester now that their teenage daughter, Grace, has recently gone away to college. Genova spends time describing Karina's upbringing in Poland and the idea of "what if's" related to a variety of potential life choices Karina could have chosen. I was a little thrown off at first because I didn't realize we were talking about Poland, and also Genova portrayed present-day Karina as very closed off and bitter about her difficult marriage. I had a hard time connecting with her in the beginning.
Genova also introduces Richard who is just starting to experience some difficulties with his hands which he first thought might be tendinitis or a similar issue, but ALS quickly paralyzed his right hand and then moved on to his left. Richard's life was changed almost immediately after his diagnosis because, being a pianist kind of required his hands... Richard, by nature, is a bit hard to connect with, both in the story, and as a reader. He is very confident and also quite closed off. Karina's descriptions of her feelings towards him don't help either. So I think this was where I struggled a bit. But once Richard started to accept his diagnosis and his way of life began to rapidly deteriorate, connecting with both him and Karina became much easier and I really struggled to put the book down!
Without giving away too much, the majority of the book explores Richard's challenges with losing independence, coming to terms with the mistakes or regrets of his past and Karina's changing role as her partner of 20+ years suddenly needs the kind of care only a very close family member or spouse could provide. As with many of Genova's other novels, the book follows the progression of the illness from beginning to end, which in this case, led to a very emotional last few chapters. I don't cry often when reading books (I save my tears for the opening of Up! and anything that involves a dog potentially dying, apparently), but this one really got to me.
He's sorry he didn't give enough of his time to her. He's sorry he's running out of it. He's afraid he doesn't have much left. He's sorry he wasn't a better father to her. He's sorry she didn't feel loved by him. It's now or never." Genova, p. 234
I think that anyone who has lost a close family member can relate to this. Death (and terminal illnesses) often leaves people with that hindsight and feelings of regret, as well as that fear that time is running out and fear of leaving important words left unsaid. Even if Richard could properly apologize for all of those things, he can't go back and change them, but figuring out how to make peace with your past is definitely a part of death and grieving.
Just before the quote above, Genova described Richard falling and Grace not hearing him right away. Grace apologizes for not being there for her father and decides to sleep on the floor beside him to keep a closer eye on him for the rest of the night. I couldn't help but think back on my own memories of my mom's illness, of wishing I could have been a better caregiver and of camping out near by her in the hospital so she wouldn't be alone. I was also around Grace's age when my mom passed away, and I am only now (ten years later) coming to terms with the realization that I just did the best I could, as any caregiver does, and that sometimes it's not even to save them, but it is enough to show them you care.
Near the end of the story there are some pretty difficult decisions to be made along the lines of removing life support. Any book describing the decisions you never want to think you might have to make is bound to tug at a reader's emotions, but Genova's writing is so beautiful and breathtaking that it goes so far beyond surface emotions to somewhere deep in your heart. Those final chapters are sad and painful and hard to read but at the same time, Genova draws readers in, I couldn't put it down (partly because I was trying to use the book cover my ugly crying, but mostly because it was so completely enthralling. I had no idea what I was getting into with this book and I am just so glad I read it. Genova did it again.
Now, go grab your kleenex box and a copy of this book and start reading it already!
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