Still Alice

Title: Still Alice

Author: Lisa Genova

Genre: Fiction, Contemporary

Time: 3.9 hours

2015 Book Challenge: a book that became a movie

This is one of those books that got me to feel the “what-will-I-do-with-me-life-now?” emotion after finishing it.  Yes, that’s how much it spoke to me.  It’s the combination of having Alzheimer’s Disease in my family (although not early onset) + this book’s different take on it + it’s very well written = book hangover.

 

I have so many things to say and a lot of feelings to process about this book that I don’t even know where and how to begin!  So this might be a very long entry…

 

I’ll start with this book’s different approach on Alzheimer’s Disease (AD).  Most materials I’ve encountered in AD is usually about how it affects the families/love ones—like how much it hurts when your spouse or parent no longer recognizes them anymore and worse when person with AD freaks out about it, how hard it is to take care of them, etc.. this book is from the perspective of the person having AD.  In this case, it’s early onset so it has its own set of dilemmas.  It takes you along this person’s journey as she “loses” her mind, you get to feel what it’s like—the confusion, the frustrations, anxiety and isolation. 

 

When you think AD, you think it’s only about losing memories.  But it’s so much more than that.  Yes, you forget names, people and events.  But as the disease progresses, you also forget words, how to do simple things like eating, putting on clothes and even how to breathe!  There’s also vision and auditory hallucinations, loss of spatial comprehension (meaning you misjudge space and distance) and losing the ability to understand and string together words or letters (so reading or even follow conversations would be difficult for you).  It’s a very isolating and scary thing to go thru.  Imagine getting lost in your own home.  You really need to pee, so you open the door to the bathroom only to find out it’s the closet, you try another door but it leads to the outside, and a few other doors but you’re still wrong.. the whole time, you know this is your house, you recognize the contents, you can attach memories each rooms and items but for the love of god, you cannot recall where the bathroom is.. so you freak out because you can’t remember where in your house the bathroom is but while you’re panicking, you totally forget why you were looking for it in the first place.. and a few minutes later, the body overrules the mind and reminds it the need to pee, by then, it’s too late to hold it in that you pee right then and there.  What’s maddening is not loosing chunks of memories but remembering enough but losing pieces of it.  Like when Alice was in Harvard Square (just a mile from their house).  She knew where she was, she can identify the buildings/stores and she knew she has been passing thru this place going home for the last 25 years but on this day, she cannot tell which way or which road leads to home.  For me, it would have been more comforting to know I was totally lost than to know where you are but forgetting how to find your way and knowing you were supposed to remember this.  This is a cruel aspect to the disease coz it kinda taunts you—it let’s you remember just enough for you to know that you forgot something significant but you brain won’t let you access that information so it’s very frustrating.  I can go on and on about this, it’s all in the book.

 

At one point, Alice wished she could trade AD for cancer.  At least with cancer, you can try to fight it with surgeries, radiations and chemos.  And if that doesn’t work, you friends will rally behind you, praising how you’ve went out fighting till the end.  With early onset AD, people just don’t know how to deal.  You don’t look sick but you mind is destroyed.  They don’t know how to interact with you, so they would try to avoid you, avoid talking to you.  It’s like you’re there but not there.  This really got to me.  There’s cancer in my family.  It’s always at the back of my mind, hovering, kinda like waiting to pounce.  I’ve always been scared of it, afraid I won’t be brave it enough to fight it if may come.  But AD… it’s something else… especially early onset because it progresses really fast but it could take years before you reach your “end.” 

 

Your body may be perfectly healthy, it’s just that your mind isn’t.  There’s nothing wrong with your vision yet you stumble a lot because your spatial comprehension is off.  Alice used to jog everyday, she did yoga, she walked to work… You can be as healthy as horse physically but your mind is betraying you.  And this is a major blow for Alice.  She kinda reminds me of the mom in Grey’s Anatomy who was this brilliant surgeon but had early onset AD.  Like the mom, Alice was this brilliant Harvard professor with a PhD, did lectures worldwide, an expert in her field, a smart person, a person who relied on her “brain.”  Her remarkable mind was who she was.  But AD is like losing your mind, so it was like slowly her identity—her sense of self.  If she wasn’t this brilliant, smart person anymore, then who was she?  And as the disease progresses, Alice will eventually lose her self-awareness, as in, she will no longer know her name, who she is.  I wonder which is more merciful, literally not knowing who you are (name, age, spouse, kids, personal history, etc) or still knowing these but you know you have lost your “identity” (as an accomplished, brilliant Harvard professor).  Makes me also ask: would you cling on to the little snippets left of your memory (yet it would remind you just how much you’ve lost) or would you rather just lose it all (but live in a constant state of confusion)?

 

I have to confess, while reading this book, it kinda made me paranoid.  Little things like mistyping things, being a bit clumsy—it made me ask myself the question, “is this a symptom of AD?” a lot.  And I’m still doing it till now… ugh! I need to move on.  Anyways, this is a book that I would recommend to others, especially if they have Alzheimer’s in their family.  And I might just look for this author’s second book.