American Horror Stories: Part III

The best day (Friday) of the week is almost here.

Over the last few days I have posted books by Lisa Genova. As much as I love her books, if I think too much about them for extended periods of time, they really do scare me.

Health, or lack of it can be frightening. So many advancements have and are being made in the medical world, but there is still so far to go. Too many people are suffering from incurable diseases.

Today brings the spotlight to the fifth and most recently published book by Genova.

Every Note Played

Although I can relate more personally to Still Alice, which was featured in yesterday’s post, Every Note Played is not only her best book to date, but also her most terrifying.

I first received this book from Overdrive on my Kindle during the summer of 2018. I began reading it and about 20% in I had to stop.

I had no personal tie to this story and the disease it is about, but it was just too heavy for me at the time. Skip ahead to just a few months ago. I came across this book and thought, ok, I’m going to try again.

I finished it in record time and was horrified.

Every Note Played is about Amyotrophic Lateral Sclerosis (ALS), otherwise known as Lou Gehrig’s Disease. After reading this, there are no words to describe how disgustingly terrible this disease is.

This story follows Richard, who is a concert pianist who has performed the world over. His fingers are, “finely calibrated instruments” (book flap) that allow him to play with incredible deft and precision.

Richard’s right arm begins to feel weird and then his fingers, hand, and arm become paralyzed.

He is diagnosed with ALS.

After this he begins playing music written for just one hand, although knowing his left arm will follow the same suit as his right.

During the beginning of this story you learn that Richard wasn’t/isn’t necessarily the most likable person. Since his divorce (way prior to the diagnosis)he has become a very arrogant womanizer. He and his ex-wife Karina have a grown daughter who is away at college.

As Richard’s illness progresses, his doctor attempts to prepare him for what the future holds. ALS takes away all muscle control, putting a person in to a completely paralyzed state from head to toe. ALS even takes your voice. His doctor recommends making voice recordings for those he holds dear. Initially he sort of brushes it off. Even with his right arm paralyzed, the realty of what he is ultimately going to face takes time to set in-yet time is what he doesn’t have.

He has to order a specialized wheelchair that he can control with his mouth way before he needs it, his home which has stairs has to be sold. His career is gone. The things he held dear are slipping away at record speed.

While this is going on you learn more about Karina, and although she holds a lot of anger towards Richard, she is also still heartbroken over the divorce.

When Richard’s condition worsens he can no longer live alone. He has a home care worker who comes every day (this character is amazing and brings another layer of wonder and amazingness to this story), but is still in need of someone to live with him full-time. This is when Karina, despite her anger steps in and moves in with Richard.

Their relationship is intense and is a beautiful part of this, at many times, ugly story. Moving in and helping Richard is not something Karina wants to do even though she feels sorry that he has ALS. It’s a rocky combination to say the least, but Richard and Katrina grow incredibly alongside each other and also within themselves despite this terrible disease. Their story, along with the other characters make this one incredible book.

This story, if I could only pick one of Genova’s books, is the one I would recommend most to you. I think what bothers me most about ALS is that the mind is still aware of everything versus something like Alzheimer’s where the mind goes first (usually).

This book will break your heart, I promise. But I also promise you will learn (if you didn’t already know) so much about ALS and that knowledge cannot help but make you a more compassionate human being.

This world needs many things, and of kindness and compassion, there will never be enough.

“Every note played is a life and a death.” – Lisa Genova, Every Note Played

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American Horror Stories : Part II

Yesterday I began my week-long theme about books that terrify me.

This first week of October is dedicated to books by Lisa Genova. On Friday, (since I will have covered all of Genova’s books) I will post a book by another author who writes in a similar vein to Genova.

I’m not featuring the books in any particular order, but I am featuring the one that I liked/scared me the most on Thursday. Yesterday’s post featured Left Neglected and Love Anthony.

Leading off today is:

Inside the O’Briens

This story follows an Irish Catholic family living in Massachusetts. The father, Joe, is a policeman and is diagnosed with Huntington’s Disease.

HD is a neurodegenerative disease. It has no treatment and no cure.

Joe begins having random outbursts, flares of temper, and random movements. He associates these to getting older and the stress of his job, but they are actually symptoms of HD.

Joe and his wife have four children. Two boys and two girls. Because Joe has HD, there is a 50% chance that each of his children will develop this disease. As if having the disease isn’t terrible enough, Joe struggles greatly knowing he is the source of where his children would acquire this disease from.

He struggles greatly with telling them. Upon knowing, each child has the choice to be tested to find out whether they carry this gene. Do you think you would want to find out if you has the choice? I feel like there are reasons for both.

Although this isn’t her most recent book, it’s the one I read most recently.

Genova writes with insight and great compassion. In the afterward section she talks about the individuals and families she worked along side with that were dealing with HD. Their lives and deaths allowed her writing and subsequently our reading to be only that much more of an authentic experience.

Next up:

Still Alice

Still Alice is one of Genova’s most popular books and was my introduction to her. She self-published this book in 2007 and after gaining such popularity it was picked up by Simon and Schuster.

This is the story of Harvard Professor Alice Howland, who is diagnosed with early-onset Alzheimer’s.

This story hit very close to home at a time when I needed to read it most. I do plan to write and share more with you all about this at a later date.

This is the the only book that has brought tears to my eyes in as long as I can remember. I highly recommend this book. If you have dealt at all with Alzheimer’s up close and personal, the very last part of this book cuts like a knife.

I could say a million cliched things about the horrors of Alzheimer’s, but the simple fact is that it robs people of ultimately everything they ever held dear. The only reprise (if it can be called that) is that the surrounding loved ones still know the soul who is tangled beneath this disease.

There is nothing to say except to love and hug harder those who you have been blessed to spend this life with.

Until tomorrow.

I had multiple favorite quotes from Still Alice:

“You’re so beautiful,” said Alice. “I’m afraid of looking at you and not knowing who you are.”
“I think that even if you don’t know who I am someday, you’ll still know that I love you.”
“What if I see you, and I don’t know that you’re my daughter, and I don’t know that you love me?”
“Then, I’ll tell you that I do, and you’ll believe me. –Still Alice

“And I have no control over which yesterdays I keep and which ones get deleted. This disease will not be bargained with.” –Still Alice

“My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. Some tomorrow soon, I’ll forget that I stood before you and gave this speech. But just because I’ll forget it some tomorrow doesn’t mean that I didn’t live every second of it today. I will forget today, but that doesn’t mean that today didn’t matter.” – Still Alice

American Horror Stories: Part I

Happy October 1st!

When I began thinking about what I wanted to post for the month of October, my mind of course thought of creepy books.

I enjoy the strange and mysterious. If a story gets a little (or a lot) dark along the way, count me in. I do like books like Frankenstein or Dracula- but those do not scare me. Nor do witches, werewolves, or anything typically bloody and gruesome.

What gets under my skin and makes it crawl is the seemingly normal and ordinary. The everyday nuances that when twisted can terrorize the mind. When a story about the normal neighbor who has been keeping people locked in a basement, yet cheerily says hello every morning- that’s what creeps me out.

The majority of books that I plan to post about this month will have those types of characteristics. Subjects and stories that are true or could very likely take place are way scarier than fiction (usually). Stories that grab you on a psychological level are so much scarier than ghosts and goblin types. Our brains are often the biggest source of what we fear.

The mind can be a scary place, remember that and tread carefully.

On the complete flip side of books that scare me on a psychological level are the books I am going to talk about this week.

These books scare me on such a profound level that at times I had to stop reading and return months later to them. It took me several years to read all five of these books because they terrify me and I needed to space them apart.

Lisa Genova has written five fiction novels. All of her books center around disease, sickness, and loss. Another author, Jodi Picoult also writes novels with medical issues front center. However, Picoult’s novels also usually present a medical-ethical dilemma as well. Her books are good and I recommend her as an author. Genova, on the other hand, presents each of her books (centering on an ailment) as open and raw as I feel is possible. The disease or sickness in question is just right there staring you in the face.

Her books are true horror stories.

Watching a disease ravage the body and/or mind of someone you love is sickening.

Aside from being an author, Lisa Genova is a neuroscientist. She researches and works with those who are afflicted with the particular diseases she has written about. Her knowledge on these subjects is vast, yet her books are written for the layman, which only makes them more frightening in my opinion.

In this post I am going to write about two of her books. Over the next few days I will cover all five. On Thursday, I will feature the one that scared me out the most. On Friday, since I will have covered all of her books, I am going to feature a book (also of the medical horror variety) by another author.

Left Neglected :

This story follows Sarah Nickerson.

Sarah is a mom like any other. Multi-tasking, trying to be as efficient as possible, all while driving her kids from one place to the next.

During one such drive she is distracted by her cell phone, looks away a second too long, and poof, her life and all of the million details it entails abruptly comes to a stop.

She isn’t killed. Instead she suffers a traumatic brain injury resulting in a diagnosis of Left Neglect.

Left Neglect means nothing in your left hemisphere exists to you. It’s a hard scenario to grasp. Although logically Sarah knows what she’s been through and what the doctors have told her, she struggles with it.

There’s a part that stands out in my mind that quickly put it in to perspective for me. Sarah, thinking she’s doing ok wants to go for a drive. Someone is with her in the car and they slowly begin to head down the street. After a minute, her friend asks her why she is driving with her (left side) door open? That door no longer exists to Sarah and she had no idea it was open.

I can’t imagine.

Just as the brain can be a scary place psychologically speaking, it can also be scary due to its size and capabilities. When those capability’s are lost, there are no prerequisites for specific healing times, if in fact they ever completely heal.

Sarah’s story is one I have thought about so much over the years since I have read it. Cell phones are everywhere and we all have used them at times when we shouldn’t have. I’m not judging because I am including myself.

I highly recommend this scary book to you. Just another reminder to be safe while you and your loved ones are in cars -surrounded by a million other people in cars who might be texting that quick little note to grab an extra gallon of milk on the way home.

Love Anthony :

This story follows two women and the power of friendship in light of horrific tragedy.

Beth and Jimmy’s fourteen year marriage ends when he has an affair. Olivia and David have a non-verbal son with Autism named Anthony. Just when they are learning to to navigate the often rough waters of his diagnosis, Anthony dies at the age of eight.

Instead of drawing closer together in the time of tragedy, Olivia and David divorce.

Both women take up different hobbies to try and understand their recent life upheavals. Beth begins to write and Olivia turns to photography. These two women and their stories do tie together.

I don’t want to write much about this story, because I want you to read it.

I cannot imagine the loss of child and I hope to God I never have to know that pain and suffering.

The books of today’s post are scary and heavy. I’ve not meant to write gratuitously, but rather to make you think. Genova writes about subjects that 100% scare the socks off me. But- at the same time I feel after reading her stories I have become a little more educated in those areas. Knowledge can be scary, but it can also be the force that propels us to push forward and advance rather than living in fear.

“Have you lost your mind?”

“No,” I say, insulted. Well, I actually have lost some of my right mind, but now’s probably not the best time to be literal.

Lisa Genova, Left Neglected