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
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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:
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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.
SEPTEMBER 2003
Alice sat at her desk in their bedroom distracted by the sounds of John racing through each of the rooms on the first floor. She needed to finish her peer review of a paper submitted to the Journal of Cognitive Psychology before her flight, and she’d just read the same sentence three times without comprehending it. It was 7:30 according to their alarm clock, which she guessed was about ten minutes fast. She knew from the approximate time and the escalating volume of his racing that he was trying to leave, but he’d forgotten something and couldn’t find it. She tapped her red pen on her bottom lip as she watched the digital numbers on the clock and listened for what she knew was coming.
“Ali?”
She tossed her pen onto the desk and sighed. Downstairs, she found him in the living room on his knees, feeling under the couch cushions.
“Keys?” she asked.
“Glasses. Please don’t lecture me, I’m late.”
She followed his frantic glance to the fireplace mantel, where the antique Waltham clock, valued for its precision, declared 8:00. He should have known better than to trust it. The clocks in their home rarely knew the real time of day. Alice had been duped too often in the past by their seemingly honest faces and had learned long ago to rely on her watch. Sure enough, she lapsed back in time as she entered the kitchen, where the microwave insisted that it was only 6:52.
She looked across the smooth, uncluttered surface of the granite countertop, and there they were, next to the mushroom bowl heaping with unopened mail. Not under something, not behind something, not obstructed in any way from plain view. How could he, someone so smart, a scientist, not see what was right in front of him?
Of course, many of her own things had taken to hiding in mischievous little places as well. But she didn’t admit this to him, and she didn’t involve him in the hunt. Just the other day, John blissfully unaware, she’d spent a crazed morning looking first all over the house and then in her office for her BlackBerry charger. Stumped, she’d surrendered, gone to the store, and bought a new one, only to discover the old one later that night plugged in the socket next to her side of the bed, where she should have known to look. She could probably chalk it all up for both of them to excessive multitasking and being way too busy. And to getting older.
He stood in the doorway, looking at the glasses in her hand but not at her.
“Next time, try pretending you’re a woman while you look,” said Alice, smiling.
“I’ll wear one of your skirts. Ali, please, I’m really late.”
“The microwave says you have tons of time,” she said, handing them to him.
“Thanks.”
He grabbed them like a relay runner taking a baton in a race and headed for the front door.
“Will you be here when I get home on Saturday?” she asked his back as she followed him down the hallway.
“I don’t know, I’ve got a huge day in lab on Saturday.”
He collected his briefcase, phone, and keys from the hall table.
“Have a good trip, give Lydia a hug and kiss for me. And try not to battle with her,” said John.
She caught their reflection in the hallway mirror—a distinguished-looking, tall man with white-flecked brown hair and glasses; a petite, curly-haired woman, her arms crossed over her chest, each readying to leap into that same, bottomless argument. She gritted her teeth and swallowed, choosing not to jump.
“We haven’t seen each other in a while. Please try to be home?” she asked.
“I know, I’ll try.”
He kissed her, and although desperate to leave, he lingered in that kiss for an almost imperceptible moment. If she didn’t know him better, she might’ve romanticized his kiss. She might’ve stood there, hopeful, thinking it said, I love you, I’ll miss you. But as she watched him hustle down the street alone, she felt pretty certain he’d just told her, I love you, but please don’t be pissed when I’m not home on Saturday.
They used to walk together over to Harvard Yard every morning. Of the many things she loved about working within a mile from home and at the same school, their shared commute was the thing she loved most. They always stopped at Jerri’s—a black coffee for him, a tea with lemon for her, iced or hot, depending on the season—and continued on to Harvard Yard, chatting about their research and classes, issues in their respective departments, their children, or plans for that evening. When they were first married, they even held hands. She savored the relaxed intimacy of these morning walks with him, before the daily demands of their jobs and ambitions rendered them each stressed and exhausted.
But for some time now, they’d been walking over to Harvard separately. Alice had been living out of her suitcase all summer, attending psychology conferences in Rome, New Orleans, and Miami, and serving on an exam committee for a thesis defense at Princeton. Back in the spring, John’s cell cultures had needed some sort of rinsing attention at an obscene hour each morning, but he didn’t trust any of his students to show up consistently. So he did. She couldn’t remember the reasons that predated spring, but she knew that each time they’d seemed reasonable and only temporary.
She returned to the paper at her desk, still distracted, now by a craving for that fight she hadn’t had with John about their younger daughter, Lydia. Would it kill him to stand behind her for once? She gave the rest of the paper a cursory effort, not her typical standard of excellence, but it would have to
do, given her fragmented state of mind and lack of time. Her comments and suggestions for revision finished, she packaged and sealed the envelope, guiltily aware that she might’ve missed an error in the study’s design or interpretation, cursing John for compromising the integrity of her work.
She repacked her suitcase, not even emptied yet from her last trip. She looked forward to traveling less in the coming months. There were only a handful of invited lectures penciled in her fall semester calendar, and she’d scheduled most of those on Fridays, a day she didn’t teach. Like tomorrow. Tomorrow she would be the guest speaker to kick off Stanford’s cognitive psychology fall colloquium series. And afterward, she’d see Lydia. She’d try not to battle with her, but she wasn’t making any promises.
ALICE FOUND HER WAY EASILY to Stanford’s Cordura Hall on the corner of Campus Drive West and Panama Drive. Its white stucco exterior, terra-cotta roof, and lush landscaping looked to her East Coast eyes more like a Caribbean beach resort than an academic building. She arrived quite early but ventured inside anyway, figuring she could use the extra time to sit in the quiet auditorium and look over her talk.
Much to her surprise, she walked into an already packed room. A zealous crowd surrounded and circled a buffet table, aggressively diving in for food like seagulls at a city beach. Before she could sneak in unnoticed, she noticed Josh, a former Harvard classmate and respected egomaniac, standing in her path, his legs planted firmly and a little too wide, as if he was ready to dive at her.
“All this, for me?” asked Alice, smiling playfully.
“What, we eat like this every day. It’s for one of our developmental psychologists, he was tenured yesterday. So how’s Harvard treating you?”