Still Alice

227 Pages·2009·0.86 MB·English

by  Genova Lisa

MORE PRAISE FOR LISA GENOVA’S POIGNANT AND
ILLUMINATING DEBUT NOVEL,
STILL ALICE
“After I read Still Alice, I wanted to stand up and tell a train full of strangers,
‘You have to get this book.’…I couldn’t put it down…. Still Alice is written not
from the outside looking in, but from the inside looking out…. [It] isn’t only
about dementia. It’s about Alice, a woman beloved by her family and respected
by her colleagues, who in the end, is still Alice, not just her disease.”
—Beverly Beckham, The Boston Globe
“Still Alice is a heartbreakingly real depiction of a woman’s descent into early
Alzheimer’s, so real, in fact, that it kept me from sleeping for several nights. I
couldn’t put it down. As a part-time caregiver to a parent with dementia, I can
say that Dr. Genova’s depiction seems spot-on, from the subtle changes in
everyday life to the ultimate changes in both patient and family. Still Alice is a
story that must be told.”
—Brunonia Barry, New York Times bestselling author of The Lace Reader
“At once agonizing and engrossing, this tale of brilliant Harvard psychology
professor Alice Howland’s descent into dementia grabs you from the first
misfired neuron. With the clinician’s precision of language and the master
storyteller’s easy eloquence, Lisa Genova shines a searing spotlight on this
Alice’s surreal wonderland. You owe it to yourself and your loved ones to read
this book. It will inform you. It will scare you. It will change you.”
—Julia Fox Garrison, author of Don’t Leave Me This Way
“I wish I could have read Lisa Genova’s masterpiece before my dad passed away
following a ten-year struggle with Alzheimer’s. I would have better understood
and appreciated what was unfolding in his confused and ravaged mind…. This
book is as important as it is impressive and will grace the lives of those affected
by this dread disease for generations to come.”
—Phil Bolsta, author of Sixty Seconds
“An intensely intimate portrait of Alzheimer’s seasoned with highly accurate and
useful information about this insidious and devastating disease.”
—Dr. Rudolph E. Tanzi, coauthor of Decoding Darkness: The Search for the
Genetic Causes of Alzheimer’s Disease
“Genova has brilliantly captured the subjective experience in this intimate
story…. Touching and informative.”
—Daniel Kuhn, author of Alzheimer’s Early Stages: First Steps for Families,
Friends, and Caregivers
“An ironic look at complicated family relationships, our hopes for future
generations, and the essence of life…. Whether or not you or someone in your
family has dementia, Still Alice is a great read.”
—The Tangled Neuron
“Powerful, insightful, tragic, inspirational…and all too true. Genova has the
great gift of insight, imagination, and expression that allows her to pry open the
fortress door and tell a story from a perspective seldom spoken…. Her revealing
insights into these deeply personal experiences show true empathy and
understanding not only of cognitive neuroscience and dementia, but also of the
human condition.”
—Alireza Atri, M.D., Ph.D., Neurologist, Massachusetts General Hospital,
Memory Disorders Unit
“The experience of Alzheimer’s disease is a process of discovery. Readers, along
with Alice, are artfully and realistically led through this process, moving from
the questions and concerns that accompany unexplained memory difficulties to
the experience of diagnosis and the impact of Alice’s changing needs on
relationships with her family and colleagues.”
—Peter Reed, Ph.D., Senior Director of Programs, Alzheimer’s Association
“Dementia is dark and ugly. Only a writer with a mastery of neuroscience and
the grit, the empathy, of an actor with Meisner training could get both the facts
and the feelings right—the way I live it daily. Still Alice is a laser precise light
into the lives of people with dementia and the people who love them.”
—Carole Mulliken, cofounder of DementiaUSA
Pocket Books
A Division of Simon & Schuster, Inc.
1230 Avenue of the Americas
New York, NY 10020
This book is a work of fiction. Names, characters, places, and incidents either
are products of the author’s imagination or are used fictitiously. Any
resemblance to actual events or locales or persons, living or dead, is entirely
coincidental.
Copyright © 2007, 2009 by Lisa Genova
All rights reserved, including the right to reproduce this book or portions thereof
in any form whatsoever. For information address Pocket Books Subsidiary
Rights Department, 1230 Avenue of the Americas, New York, NY 10020
POCKET and colophon are registered trademarks of Simon & Schuster, Inc.
Information from the Activities of Daily Living Questionnaire was taken with
permission from “The Record of Independent Living” by Sandra Weintraub,
Ph.D., in the American Journal of Alzheimer’s Disease and Other Dementia, Vol.
1, No. 2, 35–39 (1986), a SAGE publication.
Library of Congress Cataloging-in-Publication Data
Genova, Lisa.
Still Alice / Lisa Genova.
p. c.m.
1. Alzheimer’s disease—Fiction. 2. Women college teachers—Fiction. I. Title.
PS3607.E55S75 2008
813'.6—dc22 2008030986
ISBN-13: 978-1-4391-5703-9
ISBN-10: 1-4391-5703-0
Visit us on the World Wide Web:
http://www.SimonSays.com
In Memory of Angie
For Alena
Acknowledgments
I’m deeply grateful to the many people I’ve come to know through the Dementia
Advocacy and Support Network International and DementiaUSA, especially
Peter Ashley, Alan Benson, Christine Bryden, Bill Carey, Lynne Culipher,
Morris Friedell, Shirley Garnett, Candy Harrison, Chuck Jackson, Lynn Jackson,
Sylvia Johnston, Jenny Knauss, Jaye Lander, Jeanne Lee, Mary Lockhart, Mary
McKinlay, Tracey Mobley, Don Moyer, Carole Mulliken, Jean Opalka, Charley
Schneider, James Smith, Jay Smith, Ben Stevens, Richard Taylor, Diane
Thornton, and John Willis. Your intelligence, courage, humor, empathy, and
willingness to share what was individually vulnerable, scary, hopeful, and
informative have taught me so much. My portrayal of Alice is richer and more
human because of your stories.
I’d especially like to thank James and Jay, who have given me so much
beyond the boundaries of Alzheimer’s and this book. I am truly blessed to know
you.
I’d also like to thank the following medical professionals, who generously
shared their time, knowledge, and imaginations, helping me to gain a true and
specific sense for how events might unfold as Alice’s dementia is discovered and
progresses: Dr. Rudy Tanzi and Dr. Dennis Selkoe for an in-depth understanding
of the molecular biology of this disease Dr. Alireza Atri for allowing me to
shadow him for two days in the Memory Disorders Unit at Massachusetts
General Hospital, for showing me your brilliance and compassion Dr. Doug Cole
and Dr. Martin Samuels for additional understanding of the diagnosis and
treatment of Alzheimer’s Sara Smith for allowing me to sit in on
neuropsychological testing
Barbara Hawley Maxam for explaining the role of the social worker and
Mass General’s Caregivers’ Support Group Erin Linnenbringer for being
Alice’s genetic counselor Dr. Joe Maloney and Dr. Jessica Wieselquist
for role-playing as Alice’s general practice physician
Thank you to Dr. Steven Pinker for giving me a look inside life as a Harvard
psychology professor and to Dr. Ned Sahin and Dr. Elizabeth Chua for similar
views from the student’s seat.
Thank you to Dr. Steve Hyman, Dr. John Kelsey, and Dr. Todd Kahan for
answering questions about Harvard and life as a professor.
Thank you to Doug Coupe for sharing some specifics about acting and Los
Angeles.
Thank you to Martha Brown, Anne Carey, Laurel Daly, Kim Howland, Mary
MacGregor, and Chris O’Connor for reading each chapter, for your comments,
encouragement, and wild enthusiasm.
Thank you to Diane Bartoli, Lyralen Kaye, Rose O’Donnell, and Richard
Pepp for editorial feedback.
Thank you to Jocelyn Kelley at Kelley & Hall for being a phenomenal
publicist.
An enormous thank-you to Beverly Beckham, who wrote the best review
any self-published author could dream of. And you pointed the way to Julia Fox
Garrison.
Julia, I cannot thank you enough. Your generosity has changed my life.
Thank you to Vicky Bijur for representing me and for insisting that I change
the ending. You’re brilliant.
Thank you to Louise Burke, John Hardy, Kathy Sagan, and Anthony
Ziccardi for believing in this story.
I need to thank the very large and loud Genova family for shamelessly
telling everyone you know to buy your daughter’s/niece’s/cousin’s/sister’s book.
You’re the best guerrilla marketers in the world!
I also need to thank the not as large but arguably just as loud Seufert family
for spreading the word.
Last, I’d like to thank Christopher Seufert for technical and web support, for
the original cover design, for helping me make the abstract tangible, and so
much more, but mostly, for giving me butterflies.
CONTENTS
Acknowledgments
SEPTEMBER 2003
OCTOBER 2003
NOVEMBER 2003
DECEMBER 2003
JANUARY 2004
FEBRUARY 2004
MARCH 2004
APRIL 2004
MAY 2004
JUNE 2004
JULY 2004
AUGUST 2004
SEPTEMBER 2004
OCTOBER 2004
NOVEMBER 2004
DECEMBER 2004
JANUARY 2005
FEBRUARY 2005
MARCH 2005
APRIL 2005
MAY 2005
JUNE 2005
SUMMER 2005
SEPTEMBER 2005
EPILOGUE
POSTSCRIPT
Readers Club Guide for Still Alice
Even then, more than a year earlier, there were neurons in her head, not far from
her ears, that were being strangled to death, too quietly for her to hear them.
Some would argue that things were going so insidiously wrong that the neurons
themselves initiated events that would lead to their own destruction. Whether it
was molecular murder or cellular suicide, they were unable to warn her of what
was happening before they died.