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(I’ve been asked these questions several times since blogging, & now I like to take the opportunity to answer them)

 

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STILL ALICE, INTERVIEW WITH LISA GENOVA

 

~~If you haven’t read Still Alice yet, you absolutely, unequivocally should add it to your MUST READS for 2010.  Quite frankly, I’ve read hundreds of disurbing books, but this one literally moved me off my oh-so-comfortable recliner into the reality of Alzheimer’s disease.  And I did not like it.

 After reading this book, I wandered around the house in a dizzy daze for a week.  I wrote to the author declaring, “ Hey, Lisa Genova, your book has caused me to lose sleep! Your book has made me wonder if I’m losing pieces of my mind!!”

 I called all of my girlfriends and marveled, “I just read a book that blew my freaking skirt over my head”! 

You see, for a busy girl like me with a full-time job, kids, and commitments, I don’t have time for a mediocre book.  I desire a book with depth, substance, meat, messages, and muscle.

“Still Alice” offered me all of those things.

Synopsis:   Imagine yourself jogging in your own neighborhood and quite suddenly- not being able to find your way home.  Imagine pulling your underwear over your head rather than your bra. Imagine not recognizing your own face in the mirror.

   Now imagine this person is YOU.

“Still Alice” is a daunting narrative about a highly respected 49- year-old Harvard Professor, Alice Howland, whom was diagnosed with early onset Alzheimer’s disease. 

Believe me when I say, you will never feel the same about this disease.

    Read my interview with the author, Lisa Genova-below.  She is amazingly inspiring, interesting, and innovative. 
 
K.—Lisa, after reading “Still Alice” I actually lost sleep; recalling the events in my mind: thinking about Alice not being able to find her way home, thinking about Alice not remembering her daughter’s name, thinking about Alice screaming to her husband “I can’t even put on my own fucking bra!” Are the “Alzheimer Associations” and others responding positively to your book?
 
      LISA GENOVA—Oh, Yes.

I’ve given keynote speeches at Alzheimer’s Association chapter conferences (New York City and Minnesota), and I gave a keynote at the National Alzheimer’s Association’s Public Policy Forum in Washington, D.C. last March. We’ve also designed a Still Alice discussion guide specifically to help families dealing with Alzheimer’s.
 
K.— Can you tell us about the title: Still Alice? Does this mean she is “Still” Alice in spite of her disease? 
 
     LISA GENOVA—That’s exactly what it means.
 
K.—Your grandma was your inspiration to write this book. Tell us a bit about her.
 
     LISA GENOVA—My grandmother was diagnosed with Alzheimer’s when she was 85, but she had likely been living with the disease for many years before this. Like a lot of families, we expected a certain amount of forgetting to be a normal part of normal aging. So we brushed off a lot of symptoms to “Nana’s getting old.” And she was a smart, independent, and active woman who never complained. I’m sure she was coping with symptoms of dementia without bothering anyone for as long as she could.
 
It was heartbreaking to watch this disease disassemble her—to watch her forget who we were, to see her not recognize her own home, her own reflection in the mirror. I did a lot of reading to better understand what she was going through, to better understand what it must feel like to have this. But everything I read, from highly scientific research articles to self-help books, was written by a scientist, a health care professional, or a caregiver. They were all views from the outside looking in. I wanted to understand this disease from the inside out.
 
K—My book club recently had a fierce discussion about the “Alzheimer Gene.” Half of the group stated adamantly that they’d want to know if they had it, and the other half absolutely didn’t want to know. Would you want to know, Lisa? What could the benefits possibly be of knowing this beforehand? 
 
     LISA GENOVA—For people who get Alzheimer’s after the age of 65, there isn’t a single gene that causes the disease. For these people, their Alzheimer’s is caused by a complex combination of genetic and environmental influences on gene expression, not yet entirely understood. But, for people who get Alzheimer’s much younger, say 50 like Alice, and if it’s running in the family, then there’s a higher chance that you’re looking at familial Alzheimer’s—Alzheimer’s caused by a single gene mutation.
 
If my grandmother had Alzheimer’s at the age of 50, and she carried one of the three mutations that have been identified to cause Alzheimer’s, then I think I would get tested. Like Tom, in Still Alice, I think the anxiety of not knowing and wondering all the time would be worse for my health than knowing and dealing with it. Plus, there are things that can be done. Exercise, a Mediterranean diet, good sleep, low stress, low blood pressure—these are all measures shown to reduce levels of amyloid beta, and so they combat the expression of the disease. I would also probably become an even more active advocate, helping to raise awareness and funds that might lead to a cure. And I’d be sure to live a full life that matters, keeping perspective, not sweating the small stuff.
 
K.—You brought your readers into Alice’s world little by little, step by step—even repeating words and sentences. Was this deliberate? In the end, I felt as if not only Alice had the disease, but I did too! 
 
     LISA GENOVA—Yes, that was deliberate. I wanted the reader to experience her repetition of thought and confusion. I’m glad it worked!
 
K.—I feel a bit guilty admitting this, but when Alice was going to swallow the pills to end her life, I found myself saying aloud- “Do it. Do it. Do it.” Why didn’t she do it?
 
     LISA GENOVA—Well, the practical reason is that the disease prevented her from doing it. She forgot about her plan and then when she stumbled upon it, she couldn’t remember the steps to execute it.
 
I think all of the people I’ve met with young onset Alzheimer’s have considered their own suicide. These are people in their 40’s, 50’s, and 60’s. That’s extraordinary. Most people who are these ages aren’t sitting around considering whether or not they’ll take their own life in the coming years, and yet everyone with this disease thinks about this. So I knew that Alice had to go there. And I knew that she would want to do it. But I also knew that I’d never let her go through with it.
 
Alice placed all of her worth in her ability to think. Before she had Alzheimer’s, she was convinced that if she couldn’t remember her own address, then she’d be too far gone. Her life wouldn’t be worth living. As her Alzheimer’s worsened, and she was forced to live less in her head, Alice learned to live more from her heart. And I believe she discovered meaning in life beyond her ability to remember her own address.
 
K.—Several of my friends thought Alice’s husband was having an affair and found him quite unpleasant. Was he in denial or just an ass?
 
        LISA GENOVA—No, no, no. John did not have an affair.
 
Everyone diagnosed with Alzheimer’s and their loved ones go through the stages of grief—denial, anger, bargaining, and ultimately hopefully, acceptance. I think Alice and her children managed to accept Alice’s illness fairly quickly, but John couldn’t move past denial. So you put John and Alice in the same room, and it’s hard for them to connect. I also think their marriage had long ago lost the intimacy they once had. They’d been living side by side, on autopilot, not really connecting for a while. And then this crisis hit, and Alice asked for connection. I believe John loved Alice and tried to give her what she needed, especially in the summer when the ambitions of his career weren’t calling. But he’s a flawed man (aren’t they all?) faced with a tragic situation. I have great empathy for John.
 
K.—”Still Alice” is a New York Times best seller. Did you expect all of this recognition? 
 
     LISA GENOVA—Not at all. I’d never written anything beyond scientific research articles before Still Alice. My hope was for the book to be published. And I had every reason to believe that this might never happen. The manuscript was initially rejected by everyone, and I had to self-publish it and sell copies out of the trunk of my car for almost a year. There are now over a million copies in print in the US, and it’s been translated into 20 foreign languages. I’m humbled and thrilled by all that has happened.
 
K.—Who would you like to portray Alice when the film comes out? Damn, Meryl Streep may be too old!
 
     LISA GENOVA—Right now, I’m rooting for Diane Lane.
 
K.—Tell us about a day in your life. Has your world changed after writing this book? Has Oprah called yet? 
 
     LISA GENOVA—Oprah hasn’t called yet, and we’re running out of time!!
In some ways, my days and world have dramatically changed. In the past year, I’ve given talks all over the country (and abroad) about Still Alice and Alzheimer’s. I’ve signed a contract for my next two novels, so I’m officially a writer and am busy working on my next book, Left Neglected.
 
But in other ways, it’s the same. I have a nine-year-old daughter and a two-year-old son, and they don’t care one bit that I’m a NY Times bestselling author with a book deadline. I spend 3-4 hours per day writing, but most of my days are spent with my family.
 
K.—What is the next goal you’d like to accomplish? 
 
       LISA GENOVA—I’d like to get more sleep! I’d like to get back to acting! And I’d love to go see Still Alice, the movie.
 
K.—Finish this sentence: The most important thing that Alzheimer’s has taught me is….
 
     LISA GENOVA—You are more than what you can remember.

—–More interesting information about Lisa Genova:  

~~~~~~~Lisa Genova was born in 1970.  She is a Harvard-trained Neuroscientist, a Meisner trained actress, and an untrained writer (Shut up! I don’t believe this, Lisa).  Her first novel, Still Alice, is the winner of the 2008 Bronte Prize and has debuted at #5 on the New York Times Bestseller list.  Lisa lives in Massachusetts with her husband, documentary film maker, Christopher Seufer, and her two beautiful children.  Her next novel, “Left Neglected” will be out in 2011.  Love this photo, Lisa!!!!

~