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    A Very Personal Book Review: Still Alice by Lisa Genova

    Three nights ago, I started reading a novel that I wasn't sure I'd be able to finish. It caught my eye a while back, when I was browsing the local bookstore. That day, I put it down, but it stayed with me. So, a couple of months ago, I saw it again and bought it. But until last weekend, it remained in my car. I'm not sure what made me finally bring it into my house or what made me finally decide to read it.

    As some of you already know, my mother has been living with Alzheimer's Disease for fifteen years, possibly more. During that time, I have attempted to watch some movies about Alzheimers. I rented Iris, kept it past the due date, and never opened the case. I rented Away from Her, put the DVD in the DVD player, got to the main menu screen, and turned off the TV. I rented The Savages and managed to watch fifteen minutes before I was done.

    I couldn't do it. I'd start to feel a crushing pressure in my chest and I had to stop. A few years back, before I attempted to watch those movies, I promised a family member that I would read The Notebook. I didn't want to, because I anticipated a reaction similar to the one I just described. She thought I would like it though. So, I promised to try.

    Turns out, The Notebook is utterly ridiculous. I know it's supposed to be this epic love story and all, but I found the romanticization of this particular disease to be a cheap way to tug at the reader's heartstrings. It made me incredibly angry. For anyone who has read and loved The Notebook, I'm sorry to burst your bubble, but an Alzheimer's patient who is at the stage where she cannot remember her children will not be able to follow a story for ten minutes, let alone throughout an entire day, complete with a lunch break and an afternoon nap. And she won't be putting on make-up and fancy clothes either. In fact, it's a good bet that she'll smell bad and have crazy hair.

    I was able to finish The Notebook because it is completely detached from the reality. I wasn't able to finish those movies because they are more accurate depictions of the absolute brutality of this disease.

    So, again, I'm not sure what made me want to read a book that was described in the cover notes as "heartbreakingly real" and "powerful, insightful, tragic...and all too true." But I did want to. And so finally, I did. 

    Still Alice portrays the decline of a woman with early onset Alzheimer's Disease. I highly recommend the book to anyone who enjoys well-written, engaging fiction. If you are, or were, close to someone with Alzheimer's, be prepared. I pretty much cried from start to finish, including the three chapters I read in public. 

    Alice, the protaganist, is 50 when the disease starts, or at least when she starts to notice things going wrong in her brain. The story, written from Alice's perspective, gives a straightforward, unromatic account of her diagnosis and her decline, from the little and not so little clues that lead Alice to seek a medical opinion to the ways she tries to continue to act normal even as some of those around her begin to notice that she is changing.

    Through Alice's journey, I personally experienced what it must have been like for my own mother: the fear, the confusion, and the anger. It made me wish that this book had been around fifteen years ago, to help me better understand what was happening to her.

    As for me, early onset Alzheimer's is the form of the disease that is most often hereditary. I am now left wondering whether I only have ten good years left, and if it is better to have the test and find out, or simply wait and hope.  


    No one knows the future. Have hope.


    There is a very large part of me that agrees with that. But, the pragmatist in me says that I should know. If I don't have the genetic mutation, I could still end up with the disease, but if I do have it, I definitely will. Hopefully, medicine will have advanced at that point, and I would be able to receive treatment to stop or dramatically slow it down. But here I am at the point in my life where I need to make some serious decisions. What am I going to do with the next 10 years, especially where it relates to whether or not to have or adopt children? I've always wanted kids, but I can't in good conscience raise a child for ten years only to place such a horrible emotional and physical burden on them for the next twenty.

    On the other hand, if I test positive, then I have a pre-existing condition which, as things stand now, pretty much completely destroys me financially when I can't get any kind of insurance coverage to pay for expensive medication and treatment.

    Mostly, I think I want to make and own a decision. I don't want to fritter away the next ten years, not sure of what I should be doing, and then have regrets either way at the end of them.

    I was going to mention the insurance issue in my original comment. I don't think that you should risk a test without solid insurance. You'd be screwed with a pre-existing condition. Maybe Obama's plan will help. And since there is no treatment right now, finding out right now won't accomplish anything in terms of treatment.

    That said, I think that I would have a hard time resisting if I were you.

    Any child would be blessed to have a parent as selfless as one that would consider putting aside their own desires (especially as one inherent as become a parent) in consideration of what may, or may not, happen down the road. As someone who has been through the adoption process I have done a lot of soul searching myself. There are no guarantees for any of us and I hope if you feel becoming a parent is the path you are supposed to take that you take it.

    Another thing about knowing in advance is that I'd be able to get in on new treatments and trials in the very early stages.

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