Lisa Genova
Still Alice
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 (c) 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 diseaseDr. 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 compassionDr. Doug Cole and Dr. Martin Samuels for additional understanding of the diagnosis and treatment of Alzheimer'sSara Smith for allowing me to sit in on neuropsychological testingBarbara Hawley Maxam for explaining the role of the social worker and Mass General's Caregivers' Support GroupErin 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?"
"Good."
"I can't believe you're still there after all these years. You ever get too bored over there, you should consider coming here."
"I'll let you know. How are things with you?"
"Fantastic. You should come by my office after the talk, see our latest modeling data. It'll really knock your socks off."
"Sorry, I can't, I have to catch a flight to L.A. right after this," she said, grateful to have a ready excuse.
"Oh, too bad. Last time I saw you I think was last year at the psychonomic conference. I unfortunately missed your presentation."
"Well, you'll get to hear a good portion of it today."
"Recycling your talks these days, huh?"
Before she could answer, Gordon Miller, head of the department and her new superhero, swooped in and saved her by asking Josh to help pass out the champagne. As at Harvard, a champagne toast was a tradition in the psychology department at Stanford for all faculty who reached the coveted career milestone of tenure. There weren't many trumpets that heralded the advancement from point to point in the career of a professor, but tenure was a big one, loud and clear.
When everyone was holding a cup, Gordon stood at the podium and tapped the microphone. "Can I have everyone's attention for a moment?"
Josh's excessively loud, punctuated laugh reverberated alone through the auditorium just before Gordon continued.
"Today, we congratulate Mark on receiving tenure. I'm sure he's thrilled to have this particular accomplishment behind him. Here's to the many exciting accomplishments still ahead. To Mark!"
"To Mark!"
Alice tapped her cup with her neighbors', and everyone quickly resumed the business of drinking, eating, and discussing. When all of the food had been claimed from the serving trays and the last drops of champagne emptied from the last bottle, Gordon took the floor once again.
"If everyone would take a seat, we can begin today's talk."
He waited a few moments for the crowd of about seventy-five to settle and quiet down.
"Today, I have the honor of introducing you to our first colloquium speaker of the year. Dr. Alice Howland is the eminent William James Professor of Psychology at Harvard University. Over the last twenty-five years, her distinguished career has produced many of the flagship touchstones in psycholinguistics. She pioneered and continues to lead an interdisciplinary and integrated approach to the study of the mechanisms of language. We are privileged to have her here today to talk to us about the conceptual and neural organization of language."
Alice switched places with Gordon and looked out at her audience looking at her. As she waited for the applause to subside, she thought of the statistic that said people feared public speaking more than they feared death. She loved it. She enjoyed all of the concatenated moments of presenting in front of a listening audience--teaching, performing, telling a story, teeing up a heated debate. She also loved the adrenaline rush. The bigger the stakes, the more sophisticated or hostile the audience, the more the whole experience thrilled her. John was an excellent teacher, but public speaking often pained and terrified him, and he marveled at Alice's verve for it. He probably didn't prefer death, but spiders and snakes, sure.
"Thank you, Gordon. Today, I'm going to talk about some of the mental processes that underlie the acquisition, organization, and use of language."
Alice had given the guts of this particular talk innumerable times, but she wouldn't call it recycling. The crux of the talk did focus on the main tenets of linguistics, many of which she'd discovered, and she'd been using a number of the same slides for years. But she felt proud, and not ashamed or lazy, that this part of her talk, these discoveries of hers, continued to hold true, withstanding the test of time. Her contributions mattered and propelled future discovery. Plus, she certainly included those future discoveries.
She talked without needing to look down at her notes, relaxed and animated, the words effortless. Then, about forty minutes into the fifty-minute presentation, she became suddenly stuck.
"The data reveal that irregular verbs require access to the mental..."
She simply couldn't find the word. She had a loose sense for what she wanted to say, but the word itself eluded her. Gone. She didn't know the first letter or what the word sounded like or how many syllables it had. It wasn't on the tip of her tongue.
Maybe it was the champagne. She normally didn't drink any alcohol before speaking. Even if she knew the talk cold, even in the most casual setting, she always wanted to be as mentally sharp as possible, especially for the question-and-answer session at the end, which could be confrontational and full of rich, unscripted debate. But she hadn't wanted to offend anyone, and she'd drunk a little more than she probably should have when she became trapped again in passive-aggressive conversation with Josh.
Maybe it was jet lag. As her mind scoured its corners for the word and a rational reason for why she'd lost it, her heart pounded and her face grew hot. She'd never lost a word in front of an audience before. But she'd never panicked in front of an audience either, and she'd stood before many far larger and more intimidating than this. She told herself to breathe, forget about it, and move on.
She replaced the still blocked word with a vague and inappropriate "thing," abandoned whatever point she'd been in the middle of making, and continued on to the next slide. The pause had seemed like an obvious and awkward eternity to her, but as she checked the faces in the audience to see if anyone had noticed her mental hiccup, no one appeared alarmed, embarrassed, or ruffled in any way. Then, she saw Josh whispering to the woman next to him, his eyebrows furrowed and a slight smile on his face.
She was on the plane, descending into LAX, when it finally came to her.
Lexicon.
LYDIA HAD BEEN LIVING IN Los Angeles for three years now. If she'd gone to college right after high school, she would've graduated this past spring. Alice would've been so proud. Lydia was probably smarter than both of her older siblings, and they had gone to college. And law school. And medical school.
Instead of college, Lydia first went to Europe. Alice had hoped she'd come home with a clearer sense of what she wanted to study and what kind of school she wanted to go to. Instead, upon her return, she'd told her parents that she'd done a little acting while in Dublin and had fallen in love. She was moving to Los Angeles immediately.
Alice nearly lost her mind. Much to her maddening frustration, she recognized her own contribution to this problem. Because Lydia was the youngest of three, the daughter of parents who worked a lot and traveled regularly, and had always been a good student, Alice and John had ignored her to a large extent. They'd granted her a lot of room to run in her world, free to think for herself and free from the kind of micromanagement placed on a lot of children her age. Her parents' professional lives served as shining examples of what could be gained from setting lofty and individually unique goals and pursuing them with passion and hard work. Lydia understood her mother's advice about the importance of getting a college education, but she had the confidence and audacity to reject it.
Plus, she didn't stand entirely alone. The most explosive fight Alice had ever had with John had followed his two cents on the subject: I think it's wonderful, she can always go to college later, if she decides she even wants to.
Alice checked her BlackBerry for the address, rang the doorbell to apartment number seven, and waited. She was just about to press it again when Lydia opened the door.
"Mom, you're early," said Lydia.
Alice checked her watch.
"I'm right on time."
"You said your flight was coming in at eight."
"I said five."
"I have eight o'clock written down in my book."
"Lydia, it's five forty-five, I'm here."
Lydia looked indecisive and panicky, like a squirrel caught facing an oncoming car in the road.
"Sorry, come in."
They each hesitated before they hugged, as if they were about to practice a newly learned dance and weren't quite confident of the first step or who should lead. Or it was an old dance, but they hadn't performed it together in so long that each felt unsure of the choreography.
Alice could feel the contours of Lydia's spine and ribs through her shirt. She looked too skinny, a good ten pounds lighter than Alice remembered. She hoped it was more a result of being busy than of conscious dieting. Blond and five foot six, three inches taller than Alice, Lydia stood out among the predominance of short Italian and Asian women in Cambridge, but in Los Angeles, the waiting rooms at every audition were apparently full of women who looked just like her.
"I made reservations for nine. Wait here, I'll be right back."
Craning her neck, Alice inspected the kitchen and living room from the hallway. The furnishings, most likely yard sale finds and parent hand-me-downs, looked rather hip together--an orange sectional couch, retro-inspired coffee table, Brady Bunch-style kitchen table and chairs. The white walls were bare except for a poster of Marlon Brando taped above the couch. The air smelled strongly of Windex, as if Lydia had taken last-second measures to clean the place before Alice's arrival.
In fact, it was a little too clean. No DVDs or CDs lying around, no books or magazines thrown on the coffee table, no pictures on the refrigerator, no hint of Lydia's interests or aesthetic anywhere. Anyone could be living here. Then, Alice noticed the pile of men's shoes on the floor to the left of the door behind her.
"Tell me about your roommates," she said as Lydia returned from her room, cell phone in hand.
"They're at work."
"What kind of work?"
"One's bartending and the other delivers food."
"I thought they were both actors."
"They are."
"I see. What are their names again?"
"Doug and Malcolm."
It flashed only for a moment, but Alice saw it and Lydia saw her see it. Lydia's face flushed when she said Malcolm's name, and her eyes darted nervously away from her mother's.
"Why don't we get going? They said they can take us early," said Lydia.
"Okay, I just need to use the bathroom first."
As Alice washed her hands, she looked over the products sitting on the table next to the sink--Neutrogena facial cleanser and moisturizer, Tom's of Maine mint toothpaste, men's deodorant, a box of Playtex tampons. She thought for a moment. She hadn't had her period all summer. Did she have it in May? She'd be turning fifty next month, so she wasn't alarmed. She hadn't yet experienced any hot flashes or night sweats, but not all menopausal women did. That would be just fine with her.
As she dried her hands, she noticed the box of Trojan condoms behind Lydia's hairstyling products. She was going to have to find out more about these roommates. Malcolm, in particular.
They sat at a table outside on the patio at Ivy, a trendy restaurant in downtown Los Angeles, and ordered two drinks, an espresso martini for Lydia and a merlot for Alice.
"So how's Dad's Science paper coming?" asked Lydia.
She must've talked recently with her father. Alice hadn't heard from her since a phone call on Mother's Day.
"It's done. He's very proud of it."
"How's Anna and Tom?"
"Good, busy, working hard. So how did you meet Doug and Malcolm?"
"They came into Starbucks one night while I was working."
The waiter appeared, and each of them ordered dinner and another drink. Alice hoped the alcohol would dilute the tension between them, which felt heavy and thick and just beneath the tracing-paper-thin conversation.
"So how did you meet Doug and Malcolm?" she asked.
"I just told you. Why don't you ever listen to anything I say? They came into Starbucks one night talking about looking for a roommate while I was working."
"I thought you were waitressing at a restaurant."
"I am. I work at Starbucks during the week and waitress on Saturday nights."
"Doesn't sound like that leaves a lot of time for acting."
"I'm not cast in anything right now, but I'm taking workshop classes, and I'm auditioning a lot."
"What kind of classes?"
"Meisner technique."
"And what've you been auditioning for?"
"Television and print."
Alice swirled her wine, drank the last, big gulp, and licked her lips. "Lydia, what exactly is your plan here?"
"I'm not planning on stopping, if that's what you're asking."
The drinks were taking effect, but not in the direction Alice had hoped for. Instead, they served as the fuel that burned that little piece of tracing paper, leaving the tension between them fully exposed and at the helm of a dangerously familiar conversation.
"You can't live like this forever. Are you still going to work at Starbucks when you're thirty?"
"That's eight years away! Do you know what you'll be doing in eight years?"
"Yes, I do. At some point, you need to be responsible, you need to be able to afford things like health insurance, a mortgage, savings for retirement--"
"I have health insurance. And I might make it as an actor. There are people who do, you know. And they make a hell of a lot more money than you and Dad combined."
"This isn't just about money."
"Then what? That I didn't become you?"
"Lower your voice."
"Don't tell me what to do."
"I don't want you to become me, Lydia. I just don't want you to limit your choices."
"You want to make my choices."
"No."
"This is who I am, this is what I want to do."
"What, serving up Venti lattes? You should be in college. You should be spending this time in your life learning something."
"I am learning something! I'm just not sitting in a Harvard classroom killing myself trying to get an A in political science. I'm in a serious acting class for fifteen hours a week. How many hours of class a week do your students take, twelve?"
"It's not the same thing."
"Well, Dad thinks it is. He's paying for it."
Alice clenched the sides of her skirt and pressed her lips together. What she wanted to say next wasn't meant for Lydia.
"You've never even seen me act."
John had. He'd flown out alone last winter to see her perform in a play. Swamped with too many urgent things at the time, Alice couldn't free up to go. As she looked at Lydia's pained eyes, she couldn't remember now what those urgent things had been. She didn't have anything against an acting career itself, but she believed her daughter's singular pursuit of it, without an education, bordered on reckless. If she didn't go to college now, acquire a knowledge base or formal training in some field, if she didn't get a degree, what would she do if acting didn't pan out?
Alice thought about those condoms in the bathroom. What if Lydia got pregnant? Alice worried that Lydia might someday find herself trapped in a life that was unfulfilled, full of regret. She looked at her daughter and saw so much wasted potential, so much wasted time.
"You're not getting any younger, Lydia. Life goes by too fast."
"I agree."
The food came, but neither of them picked up a fork. Lydia dabbed her eyes with her hand-embroidered linen napkin. They always fell into the same battle, and it felt to Alice like trying to knock down a concrete wall with their heads. It was never going to be productive and only resulted in hurting them, causing lasting damage. She wished Lydia could see the love and wisdom in what she wanted for her. She wished she could just reach across the table and hug her daughter, but there were too many dishes, glasses, and years of distance between them.
A sudden flurry of activity a few tables away pulled their attention from themselves. Several camera flashes popped, and a small crowd of patrons and waitstaff gathered, all focused on a woman who looked a bit like Lydia.
"Who's that?" asked Alice.
"Mom," said Lydia in a tone both embarrassed and superior, perfected at the age of thirteen. "That's Jennifer Aniston."
They ate their dinner and talked only of safe things, like the food and the weather. Alice wanted to discover more about Lydia's relationship with Malcolm, but the embers of Lydia's emotions still glowed hot, and Alice feared igniting another fight. She paid the bill and they left the restaurant, full but dissatisfied.
"Excuse me, ma'am!"
Their waiter caught up to them on the sidewalk.
"You left this."
Alice paused, trying to comprehend how their waiter might come to possess her BlackBerry. She hadn't checked her email or calendar in the restaurant. She felt inside her bag. No BlackBerry. She must've removed it when she fished her wallet out to pay.
"Thank you."
Lydia looked at her quizzically, as if she wanted to say something about something other than food or weather, but then didn't. They walked back to her apartment in silence.
"JOHN?"
Alice waited, suspended in the front hallway, holding the handle of her suitcase. Harvard Magazine lay on the top of a pile of unclaimed mail strewn on the floor in front of her. The clock in the living room ticked and the refrigerator hummed. A warm, sunny late afternoon at her back, the air inside felt chilly, dim, and stale. Uninhabited.
She picked up the mail and walked into the kitchen, her suitcase on wheels accompanying her like a loyal pet. Her flight had been delayed, and she was late getting in, even according to the microwave. He'd had a whole day, a whole Saturday, to work.
The red voice-mail light on their answering machine stared her down, unblinking. She checked the refrigerator. No note on the door. Nothing.
Still clutching the handle of her suitcase, she stood in the dark kitchen and watched several minutes advance on the microwave. The disappointed but forgiving voice in her head faded to a whisper as the volume of a more primal one began to build and spread out. She thought about calling him, but the expanding voice rejected the suggestion outright and refused all excuses. She thought about deciding not to care, but the voice, now seeping down into her body, echoing in her belly, vibrating in each of her fingertips, was too powerful and pervasive to ignore.
Why did it bother her so much? He was in the middle of an experiment and couldn't leave it to come home. She'd certainly been in his shoes innumerable times. This was what they did. This was who they were. The voice called her a stupid fool.
She spotted her running shoes on the floor next to the back door. A run would make her feel better. That was what she needed.
Ideally, she ran every day. For many years now, she'd treated running like eating or sleeping, as a vital daily necessity, and she'd been known to squeeze in a jog at midnight or in the middle of a blinding snowstorm. But she'd neglected this basic need over the last several months. She'd been so busy. As she laced her shoes, she told herself she hadn't bothered bringing them with her to California because she'd known she wouldn't have the time. In truth, she'd simply forgotten to pack them.
When starting from her house on Poplar Street, she invariably followed the same route--down Massachusetts Avenue, through Harvard Square to Memorial Drive, along the Charles River to the Harvard Bridge over by MIT, and back--a little over five miles, a forty-five-minute round trip. She had long been attracted to the idea of running in the Boston Marathon but each year decided that she realistically didn't have the time to train for that kind of distance. Maybe someday she would. In excellent physical condition for a woman her age, she imagined running strong well into her sixties.
Clustered pedestrian traffic on the sidewalks and intermittent negotiations with car traffic in street intersections littered the first part of her run through Harvard Square. It was crowded and ripe with anticipation at that time of day on a Saturday, with crowds forming and milling around on street corners waiting for walk signals, outside restaurants waiting for tables, in movie theater lines waiting for tickets, and in double-parked cars waiting for an unlikely opening in a metered space. The first ten minutes of her run required a good deal of conscious external concentration to navigate through it all, but once she crossed Memorial Drive to the Charles River, she was free to run in full stride and completely in the zone.
A comfortable and cloudless evening invited a lot of activity along the Charles, yet the grassy area beside the river felt less congested than the streets of Cambridge. Despite a steady stream of joggers, dogs and their owners, walkers, Rollerbladers, cyclists, and women pushing babies in jogger strollers, like an experienced driver on a regularly traveled stretch of road, Alice retained only a vague sense for what went on around her now. As she ran along the river, she became mindful of nothing but the sounds of her Nikes hitting the pavement in syncopated rhythm with the pace of her breath. She didn't replay her argument with Lydia. She didn't acknowledge her growling stomach. She didn't think about John. She just ran.
As was her routine, she stopped running once she made it back to the John Fitzgerald Kennedy Park, a pocket of manicured lawns abutting Memorial Drive. Her head cleared, her body relaxed and rejuvenated, she began walking home. The JFK Park funneled into Harvard Square through a pleasant, bench-lined corridor between the Charles Hotel and the Kennedy School of Government.
At the other end of the corridor, she stood at the intersection of Eliot Street and Brattle, ready to cross, when a woman grabbed her forearm with startling force and said, "Have you thought about heaven today?"
The woman fixed Alice with a penetrating, unwavering stare. She had long hair the color and texture of a teased Brillo pad and wore a handmade placard hung over her chest that read AMERICA REPENT, TURN TO JESUS FROM SIN. There was always someone selling God in Harvard Square, but Alice had never been singled out so directly and intimately before.
"Sorry," she said and, noticing a break in the flow of traffic, escaped to the other side of the street.
She wanted to continue walking but stood frozen instead. She didn't know where she was. She looked back across the street. The Brillo-haired woman pursued another sinner down the corridor. The corridor, the hotel, the stores, the illogically meandering streets. She knew she was in Harvard Square, but she didn't know which way was home.
She tried again, more specifically. The Harvard Square Hotel, Eastern Mountain Sports, Dickson Bros. Hardware, Mount Auburn Street. She knew all of these places--this square had been her stomping ground for over twenty-five years--but they somehow didn't fit into a mental map that told her where she lived relative to them. A black-and-white circular "T" sign directly in front of her marked an entrance to the Red Line trains and buses underground, but there were three such entrances in Harvard Square, and she couldn't piece together which one of the three this was.
Her heart began to race. She started sweating. She told herself that an accelerated heart rate and perspiration were part of an orchestrated and appropriate response to running. But as she stood on the sidewalk, it felt like panic.
She willed herself to walk another block and then another, her rubbery legs feeling like they might give way with each bewildered step. The Coop, Cardullo's, the magazines on the corner, the Cambridge visitors' center across the street, and Harvard Yard beyond that. She told herself she could still read and recognize. None of it helped. It all lacked a context.
People, cars, buses, and all kinds of unbearable noise rushed and wove around and past her. She closed her eyes. She listened to her own blood whoosh and pulse behind her ears.
"Please stop this," she whispered.
She opened her eyes. Just as suddenly as it had left her, the landscape snapped snugly back into place. The Coop, Cardullo's, Nini's Corner, Harvard Yard. She automatically understood that she should turn left at the corner and head west on Mass Ave. She began to breathe easier, no longer bizarrely lost within a mile of home. But she'd just been bizarrely lost within a mile of home. She walked as fast as she could without running.
She turned onto her street, a quiet, tree-lined, residential road a couple of blocks removed from Mass Ave. With both feet on her road and her house in sight, she felt much safer, but not yet safe. She kept her eyes on her front door and her legs moving and promised herself that the sea of anxiety swelling furiously inside her would drain when she walked in the front hallway and saw John. If he was home.
"John?"
He appeared in the threshold of the kitchen, unshaven, his glasses sitting on top of his mad-scientist hair, sucking on a red Popsicle and sporting his lucky gray T-shirt. He'd been up all night. As she'd promised herself, her anxiety began to drain. But her energy and bravery seemed to leak out with it, leaving her fragile and wanting to collapse into his arms.
"Hey, I was wondering where you were, just about to leave you a note on the fridge. How'd it go?" he asked.
"What?"
"Stanford."
"Oh, good."
"And how's Lydia?"
The betrayal and hurt over Lydia, over him not being home when she got there, exorcised by the run and displaced by her terror at being inexplicably lost, reclaimed its priority in the pecking order.
"You tell me," she said.
"You guys fought."
"You're paying for her acting classes?" she accused.
"Oh," he said, sucking the last of the Popsicle into his red-stained mouth. "Look, can we talk about this later? I don't have time to get into it right now."
"Make the time, John. You're keeping her afloat out there without telling me, and you're not here when I get home, and--"
"And you weren't here when I got home. How was your run?"
She heard the simple reasoning in his veiled question. If she had waited for him, if she had called, if she hadn't done exactly what she'd wanted and gone for a run, she could've spent the last hour with him. She had to agree.
"Fine."
"I'm sorry, I waited as long as I could, but I've really got to get back to the lab. I've had an incredible day so far, gorgeous results, but we're not done, and I've got to analyze the numbers before we get started again in the morning. I only came home to see you."
"I need to talk about this with you now."
"This really isn't new information, Ali. We disagree about Lydia. Can't it wait until I get back?"
"No."
"You want to walk over with me, talk about it on the way?"
"I'm not going to the office, I need to be home."
"You need to talk now, you need to be home, you're awfully needy all of a sudden. Is something else going on?"
The word needy smacked a vulnerable nerve. Needy equaled weak, dependent, pathological. Her father. She'd made a lifelong point of never being like that, like him.
"I'm just exhausted."
"You look it, you need to slow down."
"That's not what I need."
He waited for her to elaborate, but she took too long.
"Look, the sooner I go, the sooner I'll be back. Get some rest, I'll be home later tonight."
He kissed her sweat-drenched head and walked out the door.
Standing in the hallway where he'd left her, with no one to confess to or confide in, she felt the full emotional impact of what she'd just experienced in Harvard Square flood over her. She sat down on the floor and leaned against the cool wall, watching her hands shake in her lap as if they couldn't be hers. She tried to focus on steadying her breath as she did when she ran.
After minutes of breathing in and breathing out, she was finally calm enough to attempt to assemble some sense out of what had just happened. She thought about the missing word during her talk at Stanford and her missing period. She got up, turned on her laptop, and Googled "menopause symptoms."
An appalling list filled the screen--hot flashes, night sweats, insomnia, crashing fatigue, anxiety, dizziness, irregular heartbeat, depression, irritability, mood swings, disorientation, mental confusion, memory lapses.
Disorientation, mental confusion, memory lapses. Check, check, and check. She leaned back in her chair and raked her fingers through her curly black hair. She looked over at the pictures displayed on the shelves of the floor-to-ceiling bookcase--her Harvard graduation day, she and John dancing on their wedding day, family portraits from when the kids were little, a family portrait from Anna's wedding. She returned to the list on her computer screen. This was just the natural, next phase in her life as a woman. Millions of women coped with it every day. Nothing life-threatening. Nothing abnormal.
She wrote herself a note to make an appointment with her doctor for a checkup. Maybe she should go on estrogen replacement therapy. She read through the list of symptoms one last time. Irritability. Mood swings. Her recent shrinking fuse with John. It all added up. Satisfied, she shut down her computer.
She sat in the darkening study awhile longer, listening to her quiet house and the sounds of neighborhood barbecues. She inhaled the smell of hamburger grilling. For some reason, she wasn't hungry anymore. She took a multivitamin with water, unpacked, read several articles from The Journal of Cognition, and went to bed.
Sometime after midnight, John finally came home. His weight in their bed woke her, but only slightly. She remained still and pretended to stay asleep. He had to be exhausted from being up all night and working all day. They could talk about Lydia in the morning. And she'd apologize for being so sensitive and moody lately. His warm hand on her hip brought her into the curve of his body. With his breath on her neck, she fell into a deep sleep, convinced that she was safe.
OCTOBER 2003
That was a lot to digest," said Alice, opening the door to her office.
"Yah, those enchiladas were huge," said Dan, grinning behind her.
Alice smacked him lightly on the arm with her notepad. They'd just sat through an hour-long lunch seminar. A fourth-year graduate student, Dan had an overall J. Crew appearance--muscular and lean with clean-cut, short blond hair, and a toothy, cocky smile. Physically, he looked nothing like John, but he possessed a confidence and sense of humor that often reminded Alice of John when he was that age.
After several false starts, Dan's thesis research had finally taken off, and he was experiencing an intoxication that Alice fondly recognized and hoped would develop into a sustainable passion. Anyone could be seduced by research when the results poured in. The trick was to love it when the results weren't forthcoming, and the reasons why were elusive.
"When do you leave for Atlanta?" she asked as she rifled through the papers on her desk, looking for the draft of his research paper that she'd edited.
"Next week."
"You can probably have it submitted by then; it's in good shape."
"I can't believe I'm getting married. God, I'm old."
She found it and handed it to him. "Please, you're hardly old. You're at the beginning of it all."
He sat down and flipped through the pages, furrowing his brows at the red scrawls in the margins. The introduction and discussion sections were the areas where Alice, with her deep and ready knowledge, contributed the most to rounding out Dan's work, filling in the holes in his narrative, creating a more contiguous picture of where and how this new piece fit into the historical and current linguistics puzzle as a whole.
"What does this say?" asked Dan, showing her a specific set of red scribbles with his finger.
"Differential effects of narrow versus distributed attention."
"What's the reference for that?" he asked.
"Oh, oh, what is it?" she asked herself, squeezing her eyes shut, waiting for the name of the first author and the year of the work to bubble to the surface. "See, this is what happens when you're old."
"Please, you're hardly old either. Don't worry, I can look it up."
One of the big memory burdens for anyone with a serious career in the sciences was knowing the years of the published studies, the details of the experiments, and who did them. Alice frequently awed her students and postdocs by offhandedly rattling off the seven studies relevant to a certain phenomenon, along with their respective authors and years of publication. Most of the senior faculty in her department had this skill at their fingertips. In fact, there existed an unspoken competition among them to see who possessed the most complete, readily accessible mental catalog of their discipline's library. Alice wore the imaginary blue ribbon more than anyone.
"Nye, MBB, 2000!" she exclaimed.
"It always amazes me that you can do that. Seriously, how do you hold all that information in your head?"
She smiled, accepting his admiration. "You'll see, like I said, you're just at the beginning."
He browsed through the rest of the pages, his eyebrows relaxed. "Okay, I'm psyched, this looks good. Thanks so much. I'll get it back to you tomorrow!"
And he bounded out of her office. That task completed, Alice referred to her to-do list, written on a yellow Post-it note stuck to the hanging cabinet just above her desktop screen.
Cognition class
Lunch seminar
Dan's paper
Eric
Birthday dinner
She placed a satisfying check mark next to "Dan's paper."
Eric? What does that mean?
Eric Wellman was the head of the psychology department at Harvard. Did she intend to tell him something, show him something, ask him something? Did she have a meeting with him? She consulted her calendar. October eleventh, her birthday. Nothing about Eric. Eric. It was too cryptic. She opened her inbox. Nothing from Eric. She hoped it wasn't time-sensitive. Irritated, but confident that she'd recover whatever it was about Eric eventually, she threw the reminder list, her fourth one that day, in the trash and pulled off a new Post-it.
Eric?
Call doctor
Memory disturbances like these were rearing their ugly little heads with a frequency that ruffled her. She'd been putting off calling her primary-care physician because she assumed that these kinds of forgetting episodes would simply resolve with time. She hoped she might learn something reassuring about the natural transience of this phase casually from someone she knew, possibly avoiding a visit to the doctor entirely. This was unlikely ever to happen, however, as all of her friends and Harvard colleagues of menopausal age were men. She admitted it was probably time that she sought some real medical advice.
ALICE AND JOHN WALKED TOGETHER from campus to Epulae in Inman Square. Inside, Alice spotted their older daughter, Anna, already sitting at the copper bar with her husband, Charlie. They both wore impressive blue suits, his accessorized with a solid gold tie and hers with a single strand of pearls. They'd been working for a couple of years at the third biggest corporate law firm in Massachusetts, Anna practicing in the area of intellectual property and Charlie working in litigation.
From the martini glass in her hand and the unchanged B-cup size of her chest, Alice knew that Anna wasn't pregnant. She'd been trying without success or secrecy to conceive for six months now. Like everything with Anna, the harder it was to obtain, the more she wanted it. Alice had advised her to wait, not to be in such a rush to check off this next major milestone in her life's to-do list. Anna was only twenty-seven, she'd just married Charlie last year, and she worked eighty to ninety hours a week. But Anna countered with the point that every professional woman considering children realized eventually: There's never going to be a good time to do this.
Alice worried about how having a family would affect Anna's career. It had been an arduous journey to tenured full professorship for Alice, not because the responsibilities became too daunting or because she didn't produce an outstanding body of work in linguistics along the way, but essentially because she was a woman who had children. The vomiting, anemia, and preeclampsia she'd experienced during the two and a half cumulative years of pregnancy had certainly distracted her and slowed her down. And the demands of the three little human beings born out of those pregnancies were more constant and time-consuming than those of any hard-ass department head or type A student she'd ever come across.
Time and again she'd watched with dread as the most promising careers of her reproductively active female colleagues slowed to a crawl or simply jumped the track entirely. Watching John, her male counterpart and intellectual equal, accelerate past her had been tough. She often wondered whether his career would have survived three episiotomies, breast-feeding, potty training, mind-numbingly endless days of singing "The wheels on the bus go round and round," and even more nights of getting only two to three hours of uninterrupted sleep. She seriously doubted it.
As they all exchanged hugs, kisses, pleasantries, and birthday greetings, a woman with severely bleached hair and dressed entirely in black approached them at the bar.
"Is everyone in your party here now?" she asked, smiling pleasantly, but a little too long to be sincere.
"No. We're still waiting for one," said Anna.
"I'm here!" said Tom, entering behind them. "Happy birthday, Mom."
Alice hugged and kissed him and then realized that he'd come in alone.
"Do we need to wait for...?"
"Jill? No, Mom, we broke up last month."
"You go through so many girlfriends, we're having a hard time keeping track of their names," said Anna. "Is there a new one we should be saving a seat for?"
"Not yet," said Tom to Anna, and "We're all here," to the woman in black.
The period of time that Tom was between girlfriends came with a regular frequency of about six to nine months but never lasted long. He was smart, intense, the spitting image of his father, in his third year at Harvard Medical School, and planning on a career as a cardiothoracic surgeon. He looked like he could use a good meal. He admitted, with irony, that every medical student and surgeon he knew ate like shit and on the fly--donuts, bags of chips, vending machine and hospital cafeteria food. None of them had the time to exercise, unless they counted taking the stairs instead of the elevator. He joked that at least they'd be qualified to treat each other for heart disease in a few years.
Once they were all settled in a semicircular booth with drinks and appetizers, the topic of conversation turned to the missing family member.
"When was the last time Lydia came to one of the birthday dinners?" asked Anna.
"She was here for my twenty-first," said Tom.
"That was almost five years ago! Was that the last one?" Anna asked.
"No, it couldn't be," said John, without offering anything more specific.
"I'm pretty sure it was," Tom insisted.
"It wasn't. She was here for your father's fiftieth on the Cape, three years ago," said Alice.
"How's she doing, Mom?" asked Anna.
Anna took transparent pleasure in the fact that Lydia didn't go to college; Lydia's abbreviated education somehow secured Anna's position as the smartest, most successful Howland daughter. The oldest, Anna had been the first to demonstrate her intelligence to her delighted parents, the first to hold the status of being their brilliant daughter. Although Tom was also very bright, Anna had never paid much attention to him, maybe because he was a boy. Then, Lydia came along. Both girls were smart, but Anna suffered to get straight A's, whereas Lydia's unblemished report cards came with little noticeable effort. Anna paid attention to that. They were both competitive and fiercely independent, but Anna wasn't a risk taker. She tended to pursue goals that were safe and conventional, and that were sure to be accompanied by tangible accolades.
"She's good," said Alice.
"I can't believe she's still out there. Has she been in anything yet?" Anna asked.
"She was fantastic in that play last year," said John.
"She's taking classes," said Alice.
Only as the words left her mouth did she remember that John had been bankrolling Lydia's nondegree curriculum behind her back. How could she have forgotten to talk to him about that? She shot him an outraged look. It landed squarely on his face, and he felt the impact. He shook his head subtly and rubbed her back. Now wasn't the time or place. She'd get into it with him later. If she could remember.
"Well, at least she's doing something," said Anna, seemingly satisfied that everyone was aware of the current Howland daughter standing.
"So Dad, how'd that tagging experiment go?" asked Tom.
John leaned in and launched into the specifics of his latest study. Alice watched her husband and son, both biologists, absorbed in analytical conversation, each trying to impress the other with what he knew. The branches of laugh lines growing out from the corners of John's eyes, visible even when he was in the most serious of moods, became deep and lively when he talked about his research, and his hands joined in like puppets on a stage.
She loved to watch him like this. He didn't talk to her about his research with such detail and enthusiasm. He used to. She still always knew enough about what he was working on to give a decent cocktail party summary, but nothing beyond the barest skeleton. She recognized these meaty conversations he used to have with her when they spent time with Tom or John's colleagues. He used to tell her everything, and she used to listen in rapt attention. She wondered when that had changed and who'd lost interest first, he in the telling or she in the listening.
The calamari, the Maine crab-crusted oysters, the arugula salad, and the pumpkin ravioli were all impeccable. After dinner, everyone sang "Happy Birthday" loudly and off-key, attracting generous and amused applause from patrons at other tables. Alice blew out the single candle in her slice of warm chocolate cake. As everyone held their flutes of Veuve Clicquot, John raised his a bit higher.
"Happy birthday to my beautiful and brilliant wife. To your next fifty years!"
They all clinked glasses and drank.
In the ladies' room, Alice studied her image in the mirror. The reflected older woman's face didn't quite match the picture that she had of herself in her mind's eye. Her golden brown eyes appeared tired even though she was fully rested, and the texture of her skin appeared duller, looser. She was clearly older than forty, but she wouldn't say she looked old. She didn't feel old, although she knew that she was aging. Her recent entry into an older demographic announced itself regularly with the unwelcome intrusion of menopausal forgetting. Otherwise, she felt young, strong, and healthy.
She thought about her mother. They looked alike. Her memory of her mother's face, serious and intent, freckles sprinkled on her nose and cheekbones, didn't contain a single sag or wrinkle. She hadn't lived long enough to earn them. Alice's mother had died when she was forty-one. Alice's sister, Anne, would've been forty-eight now. Alice tried to visualize what Anne might look like, sitting in the booth with them tonight, with her own husband and children, but couldn't imagine her.
As she sat to pee, she saw the blood. Her period. Of course, she understood that menstruation at the beginning of menopause was often irregular, that it didn't always disappear all at once. But the possibility that she wasn't actually in menopause snuck in, grabbed on tight, and wouldn't let go.
Her resolve, softened by the champagne and blood, caved in on her completely. She started crying, hard. She was having trouble taking in enough air. She was fifty years old, and she felt like she might be losing her mind.
Someone knocked on the door.
"Mom?" asked Anna. "Are you okay?"
NOVEMBER 2003
Dr. Tamara Moyer's office was located on the third floor of a five-story professional office building a few blocks west of Harvard Square, not far from where Alice had momentarily lost herself. The waiting and examining rooms, still decorated with framed Ansel Adams prints and pharmaceutical advertisement posters on the high-school-locker-gray walls, held no negative associations for her. In the twenty-two years that Dr. Moyer had been Alice's physician, she'd only ever been to see her for preventative checkups--physical exams, immunization boosters, and more recently, mammograms.
"What brings you here today, Alice?" asked Dr. Moyer.
"I'm having a lot of memory problems lately that I've been attributing to symptoms of menopause. I stopped getting my period about six months ago, but it came back last month, so maybe I'm not in menopause, and then, well, I thought I should come in and see you."
"What are the specific kinds of things that you're forgetting?" Dr. Moyer asked while writing and without looking up.
"Names, words in conversation, where I put my BlackBerry, why something is on my to-do list."
"Okay."
Alice watched her doctor closely. Her confession didn't seem to grab her in any way. Dr. Moyer received the information like a priest listening to a teenage boy's admission of impure thoughts about a girl. She probably heard this type of complaint from perfectly healthy people countless times a day. Alice almost apologized for being so alarmist, silly even, for wasting her doctor's time. Everyone forgot these sorts of things, especially as they got older. Add menopause and that she was always doing three things at once and thinking of twelve, and these kinds of memory lapses suddenly seemed small, ordinary, harmless, and even reasonably expected. Everyone's stressed. Everyone's tired. Everyone forgets things.
"I also became disoriented in Harvard Square. I didn't know where I was for at least a couple of minutes before it all came back to me."
Dr. Moyer ceased documenting symptoms on her evaluation sheet and looked directly at Alice. That grabbed her.
"Did you have any tightness in your chest?"
"No."
"Did you have any numbness or tingling?"
"No."
"Did you have a headache or were you dizzy?"
"No."
"Did you notice any heart palpitations?"
"My heart was pounding, but that was after I became confused, more like an adrenaline response to being scared. I remember feeling great, actually, just before it happened."
"Did anything else unusual happen that day?"
"No, I'd just come home from Los Angeles."
"Are you having any hot flashes?"
"No. Well, I felt what could've been one while I was disoriented, but again, I think I was just scared."
"Okay. How are you sleeping?"
"Fine."
"How many hours are you getting each night?"
"Five to six."
"Is this a change from what it's been in the past?"
"No."
"Any difficulty falling asleep?"
"No."
"How many times do you typically wake up during the night?"
"I don't think I do."
"Do you go to bed at the same time every night?"
"Usually. Except when I travel, which has been a lot lately."
"Where have you traveled?"
"In the last few months, California, Italy, New Orleans, Florida, New Jersey."
"Were you sick after any of these trips? Any fevers?"
"No."
"Are you taking any medications, anything for allergies, supplements, anything that you might not normally think of as a medicine?"
"Just a multivitamin."
"Any heartburn?"
"No."
"Any weight changes?"
"No."
"Any bleeding in your urine or bowel movements?"
"No."
She asked each question rapidly on the heels of each answer, and the topics jumped from one to the next before Alice had time to follow the reasoning behind them. As if she were riding a roller coaster with her eyes shut, she couldn't predict which way she was being turned next.
"Are you feeling more anxious or stressed than typical?"
"Just about not being able to remember things. Otherwise, no."
"How are things with your husband?"
"Fine."
"Do you think your mood is pretty good?"
"Yes."
"Do you think you could be depressed?"
"No."
Alice knew depression. Following the deaths of her mother and sister when she was eighteen, she'd lost her appetite, she'd been unable to sleep for more than a couple of hours at a time despite being endlessly tired, and she'd lost an interest in enjoying anything. It had lasted a little over a year, and she'd never experienced anything like it since. This was entirely different. This wasn't a job for Prozac.
"Do you drink alcohol?"
"Just socially."
"How much?"
"One or two glasses of wine with dinner, maybe a little more on a special occasion."
"Any drug use?"
"No."
Dr. Moyer looked at her, thinking. She tapped her pen on her notes as she read them. Alice suspected the answer wasn't anywhere on that piece of paper.
"So am I in menopause?" she asked as she gripped her parchment-papered seat with both hands.
"Yes. We can run an FSH, but everything you tell me is completely consistent with menopause. The average age of onset is forty-eight to fifty-two, so you're right in there. You may continue to get a couple of periods a year for a while. That's perfectly normal."
"Can estrogen replacement help with the memory problems?"
"We don't put women on estrogen replacement anymore, unless they're having sleep disturbances, really awful hot flashes, or they're already osteoporotic. I don't think your memory problems are due to menopause."
The blood rushed from Alice's head. Precisely the words she'd dreaded and only recently dared to consider. With that one, professionally uttered opinion, her tidy and safe explanation shattered. Something was wrong with her, and she wasn't sure that she was ready to hear what it was. She fought the impulses growing louder inside her, begging her to either lie down or get the hell out of that examining room immediately.
"Why not?"
"The symptoms of memory disturbances and disorientation listed for menopause are secondary to poor sleep hygiene. Those women aren't coping well cognitively because they aren't sleeping. It's possible that you're not sleeping as well as you think you are. Perhaps your schedule and jet lag are taking a toll, perhaps you're worrying about things throughout the night."
Alice thought about the times she'd suffered from fuzzy thinking caused by bouts of sleep deprivation. She certainly hadn't played at the top of her mental game during the last weeks of each pregnancy, following the birth of each child, and at times, when she was up against a grant deadline. In none of those circumstances, however, did she get lost in Harvard Square.
"Maybe. Could I suddenly need more sleep because I'm older or because I'm in menopause?"
"No. I don't usually see that."
"If it's not lack of sleep, what are you thinking?" she asked, the clarity and confidence now completely absent from her voice.
"Well, I'm concerned about the disorientation in particular. I don't think it was a vascular event. I think we should do some tests. I'm going to send you for blood work, a mammogram, and bone density because it's time, and a brain MRI."
A brain tumor. She hadn't even considered that. A new predator loomed in her imagination, and she felt the ingredients of panic once again brewing in her gut.
"If you don't think it was a stroke, what are you looking for in the MRI?"
"It's always good to definitively rule these things out. Make the appointment for the MRI and then one to see me right after, and we'll go over everything."
Dr. Moyer had avoided answering the question directly, but Alice didn't push her to reveal her suspicions. And Alice didn't share her tumor theory. They would both just have to wait and see.
WILLIAM JAMES HALL HOUSED THE departments of psychology, sociology, and social anthropology and was located just beyond the gates of Harvard Yard on Kirkland Street, a region referred to by students as Siberia. Geography, however, was not the most prominent factor that alienated it from the main campus. William James Hall could never be mistaken for any of the stately, classically collegiate structures that adorned the prestigious Yard and housed the freshman dormitories and classes in mathematics, history, and English. It could, however, be mistaken for a parking garage. It possessed no Doric or Corinthian columns, no red brick, no Tiffany stained glass, no spires, no grand atrium, no physical detail whatsoever that might obviously or subtly affiliate it with its parent institution. It was a 210-foot, unimaginative beige block, quite possibly the inspiration for B. F. Skinner's box. Not surprisingly, it had never been featured in the student walking tour or the Harvard calendar, spring, summer, winter, or fall.
Although the view of William James Hall was inarguably abysmal, the view from it, in particular from many of the offices and conference rooms on the upper floors, was nothing short of splendid. As Alice drank her tea at her desk in her office on the tenth floor, she relaxed in the beauty of the Charles River and Boston's Back Bay framed before her by the enormous southeast-facing window. It captured a scene that many artists and photographers have reproduced in oil, watercolor, and film, and that could be found matted and framed on the walls of office buildings all over the Boston area.
Alice appreciated the glorious advantages available to those fortunate enough to regularly observe the live version of this landscape. With the changes in the time of day or year, the quality and movement within the picture in her window altered in tirelessly interesting ways. On this sunny morning in November, Alice's View of Boston from WJH: Fall displayed the sunlight sparkling like champagne fizz off the pale blue glass of the John Hancock building and several sculls steadily sliding along a smooth and silvery Charles toward the Museum of Science as if being pulled by a string in a motion experiment.
The view also provided her with a healthy awareness of life outside Harvard. A glimpse of the red-and-white neon CITGO sign flashing against a darkening sky over Fenway Park fired her nervous system like the sudden ring of an alarm clock, awakening her from the daily trance of her ambitions and obligations and triggering thoughts of heading home. Years ago, before she was tenured, her office had been in a small, windowless room within the interior of William James Hall. Lacking visual access to the world beyond its solid beige walls, Alice had regularly worked late into the night without even realizing it. On more than one occasion, she'd been stunned at the end of the day to discover that a nor'easter had buried Cambridge in more than a foot of snow and that the less focused and /or window-owning faculty had all wisely abandoned William James Hall in search of bread, milk, toilet paper, and home.
But now she needed to stop staring out the window. She was leaving later that afternoon for the annual Psychonomic Society meeting in Chicago, and she had a ton to accomplish before then. She looked over her to-do list.
Review Nature Neuroscience paper
Department meeting
Meet with TA's
Cognition class
Finalize conference poster and itinerary
Run
Airport
She drank the last watery sip of her iced tea and began to study her lecture notes. Today's lecture focused on semantics, the meaning of language, the third of six classes on linguistics, her favorite series of classes for this course. Even after twenty-five years of teaching, Alice still set aside an hour before class to prepare. Of course, at this point in her career, she could meticulously deliver 75 percent of any given lecture without consciously thinking about it. The other 25 percent, however, contained insights, innovative techniques, or points for discussion from current findings in the field, and she used the time immediately before class to refine the organization and presentation of this newer material. The inclusion of this constantly evolving information kept her passionate about her course subjects and mentally present in each class.
Emphasis for the faculty at Harvard tipped heavily toward research performance, and so a lot of less than optimal teaching was tolerated, by both the students and the administration. The emphasis Alice placed on teaching was in part motivated by the belief that she had both a duty and the opportunity to inspire the next generation in the field, or at the very least not to be the reason that the next would-be great thought leader in cognition abandoned psychology to major in political science instead. Plus, she simply loved teaching.
Ready for class, she checked her email.
Alice,We're still waiting on you for 3 slides to be included in Michael's talk: 1 word retrieval graph, 1 model of language cartoon, and 1 text slide. His talk isn't until Thursday at 1:00, but it would be a good idea for him to drop your slides into the presentation as soon as possible, make sure he's comfortable with it all, and that it still falls within the allotted time. You can email them to either me or Michael.We're staying at the Hyatt. See you in Chicago.Kind regards,
Eric Greenberg A cold and dusty lightbulb flickered on inside Alice's head. That was what the mysterious "Eric" had meant on one of her to-do lists last month. It didn't refer to Eric Wellman at all. It was meant to remind her to email those slides to Eric Greenberg, a former colleague at Harvard, now a professor in the psychology department at Princeton. Alice and Dan had put together three slides describing a quick and dirty experiment Dan had run as part of a collaboration with Eric's postdoc Michael, to be included in Michael's talk at the psychonomic meeting. Before doing anything else that might distract her, Alice emailed the slides, along with sincerest apologies, to Eric. Fortunately, he'd get them in plenty of time. No harm done.
AS WITH MOST EVERYTHING AT Harvard, the lecture auditorium used for Alice's cognition course was grander than necessary. The blue upholstered chairs arranged in stadium seating numbered several hundred more than the students enrolled in the class. An impressive, state-of-the-art audiovisual center stood at the back of the room, and a projection screen as big as those in any movie cinema hung at the front. While three men busily hooked up various cables to Alice's computer and checked the lighting and sound, students wandered in, and Alice opened her "Linguistics Classes" folder on her laptop.
It contained six files: "Acquisition," "Syntax," "Semantics," "Comprehension," "Modeling," and "Pathologies." Alice read the titles again. She couldn't remember which lecture she was supposed to give today. She'd just spent the last hour looking over one of these subjects but couldn't remember which one. Was it "Syntax"? They all looked familiar to her, but none more salient than the others.
Ever since her visit with Dr. Moyer, each time Alice forgot something, her foreboding intensified. This wasn't like forgetting where she left her BlackBerry charger or where John left his glasses. This wasn't normal. She'd begun telling herself, in a tortured and paranoid voice, that she probably had a brain tumor. She also told herself not to freak out or worry John until she heard the more informed voice of Dr. Moyer, which unfortunately wouldn't be until next week, after the psychonomic conference.
Determined to get through the next hour, she took a deep, frustrated breath. Although she didn't remember the topic of today's lecture, she did remember who her audience was.
"Can someone please tell me what it says on your syllabus for today?" Alice asked the class.
Several students called out in a staggered, collective voice, "Semantics."
She had gambled correctly that at least a few of her students would pounce on the opportunity to be visibly helpful and knowledgeable. She didn't worry for a second that any of them would think it grievous or strange that she didn't know the subject of today's class. There existed a great metaphysical distance in age, knowledge, and power between undergraduate students and professors.
Plus, over the course of the semester, they'd witnessed specific demonstrations of her competence in class and had been wowed by her dominant presence in the course literature. If any of them gave it any consideration whatsoever, they probably assumed that she was so distracted with other obligations more important than Psychology 256 that she didn't have time even to glance at the syllabus before class. Little did they know that she'd just spent the last hour concentrating almost exclusively on semantics.
THE SUNNY DAY HAD TURNED cloudy and raw by evening, the first real flirtation with winter. A hard rain the night before had knocked most of the remaining leaves off their branches, leaving the trees nearly naked, underdressed for the coming weather. Comfortably warm in her fleece, Alice took her time walking home, enjoying the cold autumn air smell and the crunchy swishing sound her feet made as they strolled through the piles of grounded leaves.
The lights were on inside her house, and John's bag and shoes rested next to the table by the door.
"Hello? I'm home," said Alice.
John walked out from the study and stared at her, looking confused and at a loss for words. Alice stared back and waited, nervously sensing that something was dreadfully wrong. Her mind raced straight to her children. She stood frozen in the doorway, braced for horrible news.
"Aren't you supposed to be in Chicago?"
"WELL, ALICE, ALL OF YOUR blood work came back normal, and your MRI is clean," said Dr. Moyer. "We can do one of two things. We can wait, see how things go, see how you're sleeping and how you're doing in three months, or--"
"I want to see a neurologist."
DECEMBER 2003
On the night of Eric Wellman's holiday party, the sky felt low and thick, like it was going to snow. Alice hoped it would. Like most New Englanders, she'd never outgrown a childlike anticipation of the season's first snow. Of course, also like most New Englanders, what she wished for in December she'd come to loathe by February, cursing her shovel and boots, desperate to replace the frigid, monochromatic tedium of winter with the milder pinks and yellow-greens of spring. But for tonight, snow would be lovely.
Each year, Eric and his wife, Marjorie, hosted a holiday party at their home for the entire psychology department. Nothing extraordinary ever happened at this event, but there were always small moments that Alice wouldn't dream of missing--Eric sitting comfortably on the floor in a living room full of students and junior faculty on couches and chairs, Kevin and Glen wrestling for ownership of a Yankee-swapped Grinch doll, the race to get a slice of Marty's legendary cheesecake.
Her colleagues were all brilliant and odd, quick to help and argue, ambitious and humble. They were family. Maybe she felt this way because she didn't have living siblings or parents. Maybe the time of year made her sentimental, searching for meaning and belonging. Maybe that was part of it, but it was also much more.
They were more than colleagues. Triumphs of discovery, promotion, and publication were celebrated, but so were weddings and births and the accomplishments of their children and grandchildren. They traveled together to conferences all over the world, and many meetings were piggybacked with family vacations. And like in any family, it wasn't always good times and yummy cheesecake. They supported one another through slumps of negative data and grant rejection, through waves of crippling self-doubt, through illness and divorce.
But most of all, they shared a passionate quest to understand the mind, to know the mechanisms driving human behavior and language, emotion and appetite. While the holy grail of this quest carried individual power and prestige, at its core it was a collaborative effort to know something valuable and give it to the world. It was socialism powered by capitalism. It was a strange, competitive, cerebral, and privileged life. And they were in it together.
The cheesecake gone, Alice snatched the last hot-fudge-drenched cream puff and looked for John. She found him in the living room in conversation with Eric and Marjorie just as Dan arrived.
Dan introduced them to his new wife, Beth, and they offered hearty congratulations and exchanged handshakes. Marjorie took their coats. Dan had on a suit and tie, and Beth wore a floor-length red dress. Late and much too formal for this party, they'd probably gone to another one first. Eric offered to get them drinks.
"I'll have another one, too," said Alice, the glass of wine in her hand still half full.
John asked Beth how she liked married life so far. Although they'd never met, Alice knew a little about her from Dan. She and Dan had been living together in Atlanta when Dan was accepted at Harvard. She'd stayed in Atlanta, originally content with a long-distance relationship and the promise of marriage after he graduated. Three years later, Dan had carelessly mentioned that it could easily take five to six, maybe even seven years for him to finish. They had married last month.
Alice excused herself to use the ladies' room. On the way, she lingered in the long hallway that connected the newer front of the house to the older back, finishing her wine and cream puff as she admired the happy faces of Eric's grandchildren pictured on the walls. After she found and used the bathroom, she wandered into the kitchen, poured herself another glass of wine, and fell captive to a boisterous conversation among several of the faculty wives.
The wives touched elbows and shoulders as they moved about the kitchen, they knew the characters in each other's stories, they praised and teased each other, they laughed easily. These women all shopped and lunched and attended book clubs together. These women were close. Alice was close with their husbands, and it set her apart. She mostly listened and drank her wine, nodding and smiling as she followed along, her interest not truly engaged, like running on a treadmill instead of on an actual road.
She filled her wineglass again, slipped unnoticed out of the kitchen, and found John in the living room in conversation with Eric, Dan, and a young woman in a red dress. Alice stood next to Eric's grand piano and strummed the top of it with her fingers while she listened to them talk. Each year, Alice hoped that someone would offer to play it, but no one ever did. She and Anne had taken lessons for several years as children, but now she could remember only "Baby Elephant Walk" and "Turkey in the Straw" without sheet music, and only the right hand. Maybe this woman in the fancy red dress knew how to play.
At a pause in the conversation, Alice and the woman in red made eye contact.
"I'm sorry, I'm Alice Howland. I don't believe we've met."
The woman looked nervously at Dan before she answered. "I'm Beth."
She seemed young enough to be a graduate student, but by December, Alice would have at least recognized even a first-year student. She remembered Marty mentioning that he'd hired a new postdoctoral fellow, a woman.
"Are you Marty's new postdoc?" asked Alice.
The woman checked with Dan again. "I'm Dan's wife."
"Oh, so nice to finally meet you, congratulations!"
No one spoke. Eric's gaze bounced from John's eyes to Alice's wineglass and back to John, carrying a silent secret. Alice wasn't in on it.
"What?" asked Alice.
"You know what? It's getting late, and I've got to get up early. You mind if we get going?" asked John.
Once they were outside, she meant to ask John what that awkward saccade was about, but she became distracted by the gentle beauty of the cotton-candy snow that had begun to fall while they were inside, and she forgot.
THREE DAYS BEFORE CHRISTMAS, ALICE sat in the waiting room of the Memory Disorders Unit at Massachusetts General Hospital in Boston pretending to read Health magazine. Instead, she observed the others who waited. They were all in pairs. A woman who looked twenty years older than Alice sat next to a woman who looked at least twenty years older than her--most likely her mother. A woman with big, unnaturally black hair and big gold jewelry talked loudly and slowly in a thick Boston accent to her father, who sat in a wheelchair and never looked up from his perfectly white shoes. A bony, silver-haired woman flipped pages of a magazine too quickly to be reading anything next to an overweight man with matching hair and a resting tremor in his right hand. Probably husband and wife.
The wait to hear her name took forever and seemed longer. Dr. Davis had a young, hairless face. He wore black-rimmed glasses and a white lab coat, unbuttoned. He looked like he used to be thin, but his lower torso slumped a bit beyond the outline of his open coat, reminding Alice of Tom's comments about the poor health habits of physicians. He sat in a chair behind his desk and invited her to have a seat across from him.
"So Alice, tell me what's been going on."
"I've been having lots of problems remembering, and it doesn't feel normal. I'm forgetting words in lectures and conversation, I need to put 'cognition class' on my to-do list or I might forget to go teach it, I completely forgot to go to the airport for a conference in Chicago and missed my flight. I also didn't know where I was for a couple of minutes once in Harvard Square, and I'm a professor at Harvard, I'm there every day."
"How long have these things been going on?"
"Since September, maybe this summer."
"Alice, did anyone come here with you?"
"No."
"Okay. In the future, you're going to have to bring a family member or someone who sees you regularly in with you. You're complaining about a problem with your memory; you may not be the most reliable source of what's been going on."
She felt embarrassed, like a child. And his words "in the future" harassed her every thought, commanding obsessive attention, like water dripping from a faucet.
"Okay," she said.
"Are you taking any kind of medicine?"
"No, just a multivitamin."
"Any sleeping pills, diet pills, drugs of any kind?"
"No."
"How much do you drink?"
"Not a lot. One or two glasses of wine with dinner."
"Are you a vegan?"
"No."
"Have you had any sort of past injury to your head?"
"No."
"Have you had any surgeries?"
"No."
"How are you sleeping?"
"Perfectly fine."
"Have you ever been depressed?"
"Not since I was a teenager."
"How's your stress level?"
"The usual, I thrive under stress."
"Tell me about your parents. How's their health?"
"My mother and sister died in a car accident when I was eighteen. My father died of liver failure last year."
"Hepatitis?"
"Cirrhosis. He was an alcoholic."
"How old was he?"
"Seventy-one."
"Did he have any other problems with his health?"
"Not that I know of. I didn't really see much of him over the last several years."
And when she did, he was incoherent, drunk.
"What about other family?"
She relayed her limited knowledge of her extended family's medical history.
"Okay, I'm going to tell you a name and address, and you're going to repeat it back to me. Then, we're going to do some other things, and I'm going to ask you to repeat the same name and address again later. Ready, here it is--John Black, 42 West Street, Brighton. Can you repeat that for me?"
She did.
"How old are you?"
"Fifty."
"What is today's date?"
"December twenty-second, 2003."
"What season is it?"
"Winter."
"Where are we right now?"
"Eighth floor, MGH."
"Can you name some of the streets near here?"
"Cambridge, Fruit, Storrow Drive."
"Okay, what time of day is it?"
"Late morning."
"Name the months backward from December."
She did.
"Count backward from one hundred by six."
He stopped her at seventy-six.
"Name these objects."
He showed her a series of six cards with pencil drawings on them.
"Hammock, feather, key, chair, cactus, glove."
"Okay, before pointing to the window, touch your right cheek with your left hand."
She did.
"Can you write a sentence about today's weather on this piece of paper?"
She wrote, "It is a sunny but cold winter morning."
"Now, draw a clock and show the time as twenty minutes to four."
She did.
"And copy this design."
He showed her a picture of two intersecting pentagons. She copied them.
"Okay, Alice, hop up on the table. We're going to do a neurological exam."
She followed his penlight with her eyes, she tapped her thumbs and pointer fingers together rapidly, she walked heel to toe in a straight line across the room. She did everything easily and quickly.
"Okay, what was that name and address I told you earlier?"
"John Black..."
She stopped and searched Dr. Davis's face. She couldn't remember the address. What did that mean? Maybe she just hadn't paid close enough attention.
"It's Brighton, but I can't remember the street address."
"Okay, is it twenty-four, twenty-eight, forty-two, or forty-eight?"
She didn't know.
"Take a guess."
"Forty-eight."
"Was it North Street, South Street, East Street, or West Street?"
"South Street?"
His face and body language didn't expose whether she'd guessed right, but if she had to guess again, that wasn't it.
"Okay, Alice, we have your recent blood work and MRI. I want you to go for some additional blood work and a lumbar puncture. You're going to come back in four to five weeks, and you'll have an appointment for neuropsychological testing on that same day, before you see me."
"What do you think is going on? Is this just normal forgetting?"
"I don't think it is, Alice, but we need to investigate it further."
She looked him directly in the eye. A colleague of hers had once told her that eye contact with another person for more than six seconds without looking away or blinking revealed a desire for either sex or murder. She reflexively hadn't believed this, but it had intrigued her enough to test it out on various friends and strangers. To her surprise, with the exception of John, one of them always looked away before the six seconds was up.
Dr. Davis looked down at his desk after four seconds. Arguably, this meant only that he wanted neither to kill her nor tear her clothes off, but she worried that it meant more. She would get prodded and assayed, scanned and tested, but she guessed that he didn't need to investigate anything further. She'd told him her story, and she couldn't remember John Black's address. He already knew exactly what was wrong with her.
ALICE SPENT THE EARLIEST PART of Christmas Eve morning on the couch, sipping tea and browsing through photo albums. Over the years, she had transferred any newly developed pictures to the next available slots beneath the clear plastic sleeves. Her diligence had preserved their chronology, but she'd labeled nothing. It didn't matter. She still knew it all cold.
Lydia, age two; Tom, age six; and Anna, seven, at Hardings Beach in June of their first summer at the Cape house. Anna at a youth soccer game on Pequossette Field. She and John on Seven Mile Beach on Grand Cayman Island.
Not only could she place the ages and setting in each snapshot but she could also elaborate in great detail on most of them. Each print prompted other, unphotographed memories from that day, of who else had been there, and of the larger context of her life at the time that the image was captured.
Lydia in her itchy, powder blue costume at her first dance recital. That was pretenure, Anna was in junior high and in braces, Tom was lovesick over a girl on his baseball team, and John lived in Bethesda, on sabbatical for the year.
The only ones she had any real trouble with were the baby pictures of Anna and Lydia, their flawless, pudgy faces often indistinguishable. She could usually find clues, however, that revealed their identities. John's muttonchop sideburns placed him solidly in the 1970s. The baby in his lap had to be Anna.
"John, who's this?" she asked, holding up a picture of a baby.
He looked up from the journal he'd been reading, slid his glasses down his nose, and squinted.
"Is that Tom?"
"Honey, she's in a pink onesie. It's Lydia."
She checked the Kodak-printed date on the back to be sure. May 29, 1982. Lydia.
"Oh."
He pushed his glasses back up onto the bridge of his nose and resumed reading.
"John, I've been meaning to talk to you about Lydia's acting classes."
He looked up, dog-eared the page, set the journal on the table, folded his glasses, and settled back in the chair. He knew this wouldn't be quick.
"All right."
"I don't think we should be supporting her out there in any way, and I certainly don't think you should be paying for her classes behind my back."
"I'm sorry, you're right, I meant to tell you, but then I got busy and forgot, you know how it gets. But I disagree with you on this, you know I do. We supported the other two."
"That's different."
"It's not. You just don't like what she picked."
"It's not the acting. It's the not going to college. The window of time she's likely to ever go is rapidly closing, John, and you're making it easier for her to stay out."
"She doesn't want to go to college."
"I think she's just rebelling against who we are."
"I don't think it has anything to do with what we want or don't want or who we are."
"I want more for her."
"She's working hard, she's excited and serious about what she's doing, she's happy. That's what we want for her."
"It's our job to pass on our wisdom about life to our kids. I'm really afraid she's missing out on something essential. The exposure to different subjects, different ways of thinking, the challenges, opportunities, the people you meet. We met in college."
"She's getting all that."
"It's not the same."
"So it's different. I think paying for her classes is more than fair. I'm sorry I didn't tell you, but you're hard to talk to about this. You don't ever budge."
"Neither do you."
He glanced at the clock on the fireplace mantel, reached for his glasses, and placed them on top of his head.
"I've got to go to lab for about an hour, then I'll pick her up at the airport. You need anything while I'm out?" he asked as he stood to leave.
"No."
They locked eyes.
"She's going to be fine, Ali, don't worry."
She raised her eyebrows but didn't say anything. What else could she say? They'd played this scene out together before, and this was how it ended. John argued the logical path of least resistance, always maintaining his status as the favorite parent, never convincing Alice to switch over to the popular side. And nothing she said swayed him.
John left the house. Relaxed in his absence, she returned to the pictures in her lap. Her adorable children as babies, toddlers, teenagers. Where did the time go? She held the baby picture of Lydia that John had guessed was Tom. She felt a renewed and reassuring confidence in the strength of her memory. But of course, these pictures only opened the doors to histories housed in long-term memories.
John Black's address would have lived in recent memory. Attention, rehearsal, elaboration, or emotional significance was needed if perceived information was to be pushed beyond the recent memory space into longer-term storage, else it would be quickly and naturally discarded with the passage of time. Focusing on Dr. Davis's questions and instructions had divided her attention and prevented her from rehearsing or elaborating on the address. And although his name elicited a bit of fear and anger now, the fictitious John Black had meant nothing to her in Dr. Davis's examining room. Under these circumstances, the average brain would be quite susceptible to forgetting. Then again, she didn't have an average brain.
She heard the mail drop through the slot in the front door and had an idea. She looked at each item once--a baby wearing a Santa hat pictured on a holiday greeting card from a former graduate student, an advertisement for a fitness club, the phone bill, the gas bill, yet another L.L.Bean catalog. She returned to the couch, drank her tea, stacked the photo albums back on the shelf, and then sat very still. The ticking clock and brief eruptions of steam from various radiators made the only sounds in the house. She stared at the clock. Five minutes passed. Long enough.
Without looking at the mail, she said aloud, "Baby in Santa hat card, gym membership offering, phone bill, gas bill, another L.L.Bean catalog."
Piece of cake. But to be fair, the time between being presented with John Black's address and being asked to recall it had been much longer than five minutes. She needed an extended delay interval.
She grabbed the dictionary off the shelf and devised two rules for picking a word. It had to be low frequency, one she didn't use every day, and it had to be a word that she already knew. She was testing her recent memory, not learning acquisition. She opened the dictionary to an arbitrary page and put her finger down on the word "berserk." She wrote it on a piece of paper, folded it, put it in her pants pocket, and set the timer on the microwave for fifteen minutes.
One of Lydia's favorite books when she was a toddler was Hippos Go Berserk! Alice went about the business of readying for Christmas Eve dinner. The timer beeped.
"Berserk," without hesitation or needing to consult the piece of paper.
She continued playing this game throughout the day, increasing the number of words to remember to three and the delay period to forty-five minutes. Despite this added degree of difficulty and the added likelihood of interference from the distraction of dinner preparation, she remained error-free. Stethoscope, millennium, hedgehog. She made the ricotta raviolis and the red sauce. Cathode, pomegranate, trellis. She tossed the salad and marinated the vegetables. Snapdragon, documentary, vanish. She put the roast in the oven and set the dining room table.
Anna, Charlie, Tom, and John sat in the living room. Alice could hear Anna and John arguing. She couldn't make out the topic from the kitchen, but she could tell it was an argument by the emphasis and volume of the back-and-forth. Probably politics. Charlie and Tom were staying out of it.
Lydia stirred the hot mulled cider on the stove and talked about her acting classes. Between concentrating on making dinner, the words she needed to remember, and Lydia, Alice didn't have the mental reserve to protest or disapprove. Uninterrupted, Lydia spoke in a free and passionate monologue about her craft, and despite Alice's strong bias against it, she found she couldn't resist being interested.
"After the imagery, you layer on the Elijah question, 'Why this night rather than any other?'" said Lydia.
The timer beeped. Lydia stepped aside without being asked, and Alice peeked in the oven. She waited for an explanation from the undercooked roast long enough for her face to become uncomfortably hot. Oh. It was time to recall the three words in her pocket. Tambourine, serpent...
"You're never playing everyday life as usual, the stakes are always life and death," said Lydia.
"Mom, where's the wine opener?" Anna hollered from the living room.
Alice struggled to ignore her daughters' voices, the ones her mind had been trained to hear above all other sounds on the planet, and to concentrate on her own inner voice, the one repeating the same two words like a mantra.
Tambourine, serpent, tambourine, serpent, tambourine, serpent.
"Mom?" asked Anna.
"I don't know where it is, Anna! I'm busy, look for it yourself."
Tambourine, serpent, tambourine, serpent, tambourine, serpent.
"It's always about survival when you boil it down. What does my character need to survive and what will happen to me if I don't get it?" said Lydia.
"Lydia, please, I don't want to hear about this right now," Alice snapped, holding her sweaty temples.
"Fine," said Lydia. She turned herself squarely toward the stove and stirred vigorously, obviously hurt.
Tambourine, serpent.
"I still can't find it!" yelled Anna.
"I'll go help her," said Lydia.
Compass! Tambourine, serpent, compass.
Relieved, Alice took out the ingredients for the white-chocolate bread pudding and placed them on the counter--vanilla extract, a pint of heavy cream, milk, sugar, white chocolate, a loaf of challah bread, and two half-dozen cartons of eggs. A dozen eggs? If the piece of notebook paper with her mother's recipe on it still existed, Alice didn't know where it was. She hadn't needed to refer to it in years. It was a simple recipe, arguably better than Marty's cheesecake, and she'd made it every Christmas Eve since she was a young girl. How many eggs? It had to be more than six, or she would've taken out only one carton. Was it seven, eight, nine?
She tried skipping over the eggs for a moment, but the other ingredients looked just as foreign. Was she supposed to use all of the cream or measure out only some of it? How much sugar? Was she supposed to combine everything all at once or in a particular sequence? What pan did she use? At what temperature did she bake it and for how long? No possibility rang true. The information just wasn't there.
What the hell is wrong with me?
She revisited the eggs. Still nothing. She hated those fucking eggs. She held one in her hand and threw it as hard as she could into the sink. One by one, she destroyed them all. It was marginally satisfying, but not enough. She needed to break something else, something that required more muscle, something that would exhaust her. She scanned the kitchen. Her eyes were furious and wild when they met Lydia's in the doorway.
"Mom, what are you doing?"
The massacre had not been confined to the sink. Empty shards of shell and yolk were splattered all over the wall and counter, and the faces of the cabinets were streaked with tears of albumen.
"The eggs were past the expiration date. There's no pudding this year."
"Aw, we have to have the pudding, it's Christmas Eve."
"Well, there aren't any more eggs, and I'm tired of being in this hot kitchen."
"I'll go to the store. Go into the living room and relax, I'll make the pudding."
Alice walked into the living room, shaking but no longer riding that powerful wave of anger, not sure whether she was feeling deprived or thankful. John, Tom, Anna, and Charlie were all seated and in conversation, holding glasses of red wine. Apparently, someone had found the opener. With her coat and hat on, Lydia poked her head into the room.
"Mom, how many eggs do I need?"
JANUARY 2004
She had good reasons to cancel her appointments on the morning of January nineteenth with the neuropsychologist and Dr. Davis. Harvard's exam week for the fall semester fell in January, after the students returned from Winter Break, and the final exam for Alice's cognition class was scheduled for that morning. Her attendance wasn't crucial, but she liked the sense of closure that being there provided, of seeing her students through the course from start to finish. With some reluctance, she arranged for a teaching fellow to proctor the exam. The bigger good reason was that her mother and sister had died on January nineteenth, thirty-two years ago. She didn't consider herself superstitious like John, but she'd never received good news on that day. She'd asked the receptionist for another date, but it was either then or four weeks from then. So she took it, and she didn't cancel. The idea of waiting another month was that unappealing.
She imagined her students back at Harvard, nervous about what questions they would be asked, hurrying a semester's worth of knowledge onto the pages of their blue exam books, hoping their heavily crammed short-term memories wouldn't fail them. She understood exactly how they felt. Most of the neuropsychological tests administered to her that morning--Stroop, Raven's Colored Progressive Matrices, Luria Mental Rotation, Boston Naming, WAIS-R Picture Arrangement, Benton Visual Retention, NYU Story Recall--were familiar to her. They were designed to tease out any subtle weakness in the integrity of language fluency, recent memory, and reasoning processes. She had, in fact, taken many of them before, serving as a negative control in the cognition studies of various graduate students. But today, she wasn't a control. She was the subject being tested.
The copying, recalling, arranging, and naming took almost two hours to complete. Like the students she imagined, she felt relieved to be done and fairly confident in her performance. Escorted by the neuropsychologist, Alice entered Dr. Davis's office and sat in one of the two chairs arranged side by side, facing him. He acknowledged the empty chair next to her with a disappointed sigh. Even before he spoke, she knew she was in trouble.
"Alice, didn't we talk about you coming here with someone last time?"
"We did."
"Okay, it's a requirement of this unit that every patient comes in with someone who knows them. I won't be able to treat you properly unless I have an accurate picture of what's going on, and I can't be sure I have that information without this person present. Next time, Alice, no excuses. Do you agree to this?"
"Yes."
Next time. Any solid relief and confidence generated from her self-evaluated competence in the neuropsychological exams evaporated.
"I have the results of all of your tests now, so we can go over everything. I don't see anything abnormal in your MRI. No cerebral vascular disease, no evidence of any small, silent strokes, no hydrocephalus or masses. Everything there looks fine. And your blood work and lumbar puncture all came back negative as well. I was as aggressive here as we can be and looked for every condition that could sensibly account for the kinds of symptoms you're experiencing. So we know you don't have HIV, cancer, a vitamin deficiency, mitochondrial disease, or a number of other rare conditions."
His speech was well constructed, obviously not his first delivery of its kind. The "what she did have" would come at the end. She nodded, letting him know that she followed him and that he should continue.
"You scored in the ninety-ninth percentile in your ability to attend, in things like abstract reasoning, spatial skills, and language fluency. But unfortunately, here's what I do see. You have a recent memory impairment that is out of proportion to your age and is a significant decline in your previous level of functioning. I know this from your own account of the problems you've been having and from your description of the degree to which they've been interfering with your professional life. I also personally witnessed it when you couldn't retrieve the address I'd asked you to remember the last time you were here. And although you were perfect in most of the cognitive domains today, you showed a lot of variability in two of the tasks that were related to recent memory. In fact, you were down to the sixtieth percentile in one.
"When I put all of this information together, Alice, what it tells me is that you fit the criteria of having probable Alzheimer's disease."
Alzheimer's disease.
The words knocked the wind out of her. What exactly did he just tell her? She repeated his words in her head. Probable. It gave her the will to inhale, the ability to speak.
"So 'probable' means that I might not fit the criteria."
"No, we use the word 'probable' because the only definitive diagnosis for Alzheimer's right now is by examining the histology of the brain tissue, which requires either an autopsy or a biopsy, neither of which is a good option for you. It's a clinical diagnosis. There's no dementia protein in your blood that can tell us you have it, and we wouldn't expect to see any brain atrophy on an MRI until much later stages in the disease."
Brain atrophy.
"But this can't be possible, I'm only fifty."
"You have early-onset Alzheimer's. You're right, we typically think of Alzheimer's as a disease that affects the elderly, but ten percent of people with Alzheimer's have this early-onset form and are under the age of sixty-five."
"How is that different from the older form?"
"It's not, except that its cause usually has a strong genetic linkage, and it manifests much earlier."
Strong genetic linkage. Anna, Tom, Lydia.
"But if you only know for sure what I don't have, how can you say with any certainty that this is Alzheimer's?"
"After listening to you describe what's been happening and to your medical history, after testing your orientation, registration, attention, language, and recall, I was ninety-five percent sure. With no other explanation turning up in your neurological exam, blood, cerebral spinal fluid, or MRI, the other five percent goes away. I'm sure, Alice."
Alice.
The sound of her name penetrated her every cell and seemed to scatter her molecules beyond the boundaries of her own skin. She watched herself from the far corner of the room.
"So what does this mean?" she heard herself ask.
"We have a couple of drugs for treating Alzheimer's now that I want to put you on. The first is Aricept. It boosts cholinergic functioning. The second is Namenda. It was just approved this fall and has shown a lot of promise. Neither of these is a cure, but they can slow the progression of symptoms, and we want to buy you as much time as possible."
Time. How much time?
"I also want you to take vitamin E twice a day and vitamin C, baby aspirin, and a statin once a day. You don't show any clear risk factors for cardiovascular disease, but anything that's good for the heart is going to be good for the brain, and we want to preserve every neuron and synapse we can."
He wrote this information down on a prescription pad.
"Alice, does anyone in your family know that you're here?"
"No," she heard herself say.
"Okay, you're going to have to tell someone. We can slow the rate of cognitive decline that you've been experiencing, but we can't stop it or reverse it. It's important to your safety that someone who sees you regularly knows what's going on. Will you tell your husband?"
She saw herself nod.
"Okay, good. Then fill these prescriptions, take everything as directed, call me if you have any problems with side effects, and make an appointment to come back in six months. Between now and then, you can call or email me if you have any questions, and I would also encourage you to contact Denise Daddario. She's the social worker here and can help you with resources and support. I'll see you and your husband together then in six months, and we'll look at how you're doing."
She searched his intelligent eyes for something else. She waited. She became strangely aware of her hands clenching the cold metal arms of the chair she sat in. Her hands. She hadn't become an ethereal collection of molecules hovering in the corner of the room. She, Alice Howland, was sitting on a cold, hard chair next to an empty chair in a neurologist's office in the Memory Disorders Unit on the eighth floor of Massachusetts General Hospital. And she'd just been diagnosed with Alzheimer's disease. She searched her doctor's eyes for something else, but could find only truth and regret.
January nineteenth. Nothing good ever happened on that day.
IN HER OFFICE WITH THE door shut, she read through the Activities of Daily Living questionnaire that Dr. Davis had told her to give to John. This should be filled out by an informant, NOT the patient was typed in bold at the top of the first page. The word informant, the closed door, and her pounding heart all contributed to a feeling of conspicuous guilt, like she was hiding in some Eastern European city, in possession of illegal documents, and the police were on their way, sirens blaring.
The rating scale for each activity ranged from 0 (no problems, same as always) to 3 (severely impaired, totally dependent on others). She scanned down the descriptions next to the 3s and assumed they represented the end stages of this disease, the end of this straight and short road that she'd been suddenly forced onto in a car with no brakes and no steering.
Number 3 was a humiliating list: Must be fed most foods. Has no control over bowel or bladder. Must be given medication by others. Resists efforts of caretaker to clean or groom. No longer works. Home or hospital bound. No longer handles money. No longer goes out unaccompanied. Humiliating, but her analytical mind became instantly skeptical of the actual relevance of this list to her individual outcome. How much of this list was due to the progression of Alzheimer's disease and how much was confounded by the overwhelmingly elderly population it described? Were the eighty-year-olds incontinent because they had Alzheimer's or because they had eighty-year-old bladders? Perhaps these 3s wouldn't apply to someone like her, someone so young and physically fit.
The worst of it came under the heading "Communications." Speech is almost unintelligible. Does not understand what people are saying. Has given up reading. Never writes. No more language. Other than misdiagnosis, she couldn't formulate a hypothesis that would render her immune to this list of 3s. It could all apply to someone like her. Someone with Alzheimer's.
She looked at the rows of books and periodicals on her bookcase, the stack of final exams to be corrected on her desk, the emails in her inbox, the red, flashing voice-mail light on her phone. She thought about the books she'd always wanted to read, the ones adorning the top shelf in her bedroom, the ones she figured she'd have time for later. Moby-Dick. She had experiments to perform, papers to write, and lectures to give and attend. Everything she did and loved, everything she was, required language.
The last pages of the questionnaire asked the informant to rate the severity of the following symptoms experienced by the patient in the past month: delusions, hallucinations, agitation, depression, anxiety, euphoria, apathy, disinhibition, irritability, repetitive motor disturbances, sleep disruptions, changes in eating. She felt tempted to fill in the answers herself, to demonstrate that she was actually perfectly fine and that Dr. Davis must be wrong. Then she remembered his words: You may not be the most reliable source of what's been going on. Maybe, but then she still remembered he'd said that. She wondered when the time would come that she wouldn't.
Her knowledge of Alzheimer's disease admittedly swept the surface only lightly. She knew that the brains of Alzheimer's patients had reduced levels of acetylcholine, a neurotransmitter important in learning and memory. She also knew that the hippocampus, a sea-horse-shaped structure in the brain critical for the formation of new memories, became mired in plaques and tangles, although she didn't really understand what plaques and tangles were exactly. She knew that anomia, a pathological tip of the tongue, was another hallmark symptom. And she knew that someday, she'd look at her husband, her children, her colleagues, faces she'd known and loved forever, and she wouldn't recognize them.
And she knew there was more. There were layers of disturbing filth to uncover. She typed the words "Alzheimer's disease" into Google. Her middle finger was poised over the return key when two jolting knocks caused her to abort the mission with the speed of an involuntary reflex and hide the evidence. Without further warning or waiting for an answer, the door opened.
She feared her face read stunned, anxious, devious.
"Are you ready?" asked John.
No, she wasn't. If she confessed to John what Dr. Davis had told her, if she gave him the Activities of Daily Living questionnaire, it would all become real. John would become the informant, and Alice would become the dying, incompetent patient. She wasn't ready to turn herself in. Not yet.
"Come on, the gates close in an hour," said John.
"Okay," said Alice. "I'm ready."
FOUNDED IN 1831 AS AMERICA'S first nonsectarian garden cemetery, Mount Auburn was now a National Historic Landmark, a world-renowned arboretum and horticultural landscape, and the final resting place for Alice's sister, mother, and father.
This was the first time that her father would be present on the anniversary of that fateful car accident, dead or otherwise, and it irritated her. This had always been a private visit between her and her mother and sister. Now, he would be there, too. He didn't deserve to be.
They walked down Yew Avenue, an older section of the cemetery. Her eyes and pace lingered as they passed the familiar headstones of the Shelton family. Charles and Elizabeth had buried all three of their children--Susie, just a baby, maybe a stillbirth, in 1866; Walter, age two, in 1868; and Carolyn, age five, in 1874. Alice dared to imagine Elizabeth's grief by superimposing her own children's names on the gravestones. She could never hold the macabre images for long--Anna blue and silent at birth; Tom dead, probably following an illness, in his yellow feetie pajamas; and Lydia, rigid and lifeless after a day of coloring in kindergarten. The circuits of her imagination always rejected this sort of gruesome specificity, and all three of her children animated quickly back to the way they were.
Elizabeth was thirty-eight when her last child died. Alice wondered whether she tried to have more children but could no longer conceive, or whether she and Charles started sleeping in separate beds, too scarred to risk the purchase of another tiny headstone. She wondered whether Elizabeth, who lived twenty years longer than Charles, ever found comfort or peace in her life.
They continued in silence to her family's plot. Their gravestones were simple, like granite Brobdingnagian shoe boxes, and stood in a discrete row under the branches of a purple-leaf beech tree. Anne Lydia Daly, 1955-1972; Sarah Louise Daly, 1931-1972; Peter Lucas Daly, 1932-2003. The low-branched beech tree towered at least one hundred feet above them and wore beautiful, glossy deep purplish green leaves in the spring, summer, and fall. But now, in January, its leafless, black branches cast long, distorted shadows on her family's graves, and it looked perfectly creepy. Any horror movie director would love that tree in January.
John held her gloved hand as they stood under the tree. Neither of them spoke. In the warmer months, they'd hear the sounds of birds, sprinklers, grounds crew vehicles, and music from car radios. Today, the cemetery was silent but for the distant tide of traffic beyond the gates.
What did John think about while they stood there? She never asked him. He had never met her mother or sister, so he'd be hard-pressed to entertain thoughts of them for very long. Did he think about his own mortality or spirituality? About hers? Did he think about his parents and sisters, who were all still alive? Or was he in a different place entirely, going over the details of his research or classes or fantasizing about dinner?
How could she possibly have Alzheimer's disease? Strong genetic linkage. Would her mother have developed this if she had lived to be fifty? Or was it her father?
When he was younger, he drank obscene volumes of alcohol without ever appearing overtly drunk. He grew increasingly quiet and introverted but always retained enough communication skills to order the next whiskey or to insist that he was okay to drive. Like the night he drove the Buick off Route 93 and into a tree, killing his wife and younger daughter.
His drinking habits never changed, but his demeanor did, probably about fifteen years ago. The nonsensical, belligerent rants, a disgusting lack of hygiene, not knowing who she was--Alice had assumed it was the liquor, finally taking its toll on his pickled liver and marinated mind. Was it possible that he had been living with Alzheimer's disease and was never diagnosed? She didn't need an autopsy. It fit too precisely not to be true, and it provided her with the ideal target to throw her blame.
Well, Dad, are you happy? I've got your lousy DNA. You're going to get to kill us all. How does it feel to murder your entire family?
Her crying, explosive and anguished, would have seemed appropriate to any stranger observing the scene--her dead parents and sister buried in the ground, the darkening graveyard, the eerie beech tree. To John, it must've come completely unexpected. She hadn't shed a single tear over her father's death last February, and the sorrow and loss she felt for her mother and sister had long been tempered by time.
He held her without coaxing her to stop and without hinting that he'd do anything but hold her for as long as she cried. She realized the cemetery was closing any minute. She realized she was probably worrying John. She realized no amount of crying would cleanse her contaminated brain. She pressed her face harder into his wool peacoat and cried until she was exhausted.
He held her head in his hands and kissed the wet outside corner of each of her eyes.
"Ali, are you okay?"
I'm not okay, John. I have Alzheimer's disease.
She almost thought she'd said the words aloud, but she hadn't. They remained trapped in her head, but not because they were barricaded by plaques and tangles. She just couldn't say them aloud.
She pictured her own name on a matching headstone next to Anne's. She'd rather die than lose her mind. She looked up at John, his eyes patient, waiting for an answer. How could she tell him she had Alzheimer's disease? He loved her mind. How could he love her with this? She looked back at Anne's name carved in stone.
"I'm just having a really bad day."
She'd rather die than tell him.
SHE WANTED TO KILL HERSELF. Impulsive thoughts of suicide came at her with speed and brawn, outmaneuvering and muscling out all other ideas, trapping her in a dark and desperate corner for days. But they lacked stamina and withered into a flimsy flirtation. She didn't want to die yet. She was still a well-respected professor of psychology at Harvard University. She could still read and write and use the bathroom properly. She had time. And she had to tell John.
She sat on the couch with a gray blanket on her lap, hugging her knees, feeling like she might throw up. He sat on the edge of the wing chair opposite her, his body utterly still.
"Who told you this?" asked John.
"Dr. Davis, he's a neurologist at Mass General."
"A neurologist. When?"
"Ten days ago."
He turned his head and spun his wedding band while he seemed to examine the paint on the wall. She held her breath as she waited for him to look at her again. Maybe he'd never look at her the same way. Maybe she'd never breathe again. She hugged herself a little tighter.
"He's wrong, Ali."
"He's not."
"There's nothing wrong with you."
"Yes, there is. I've been forgetting things."
"Everyone forgets things. I can never remember where I put my glasses. Should this doctor diagnose me with Alzheimer's, too?"
"The kinds of problems I've been having aren't normal. It's not just misplacing glasses."
"All right, so you've been forgetting things, but you're menopausal, you're stressed, and your father's death probably brought back all sorts of feelings around losing your mom and Anne. You're probably depressed."
"I'm not depressed."
"How do you know? Are you a clinician? You should see your own doctor, not this neurologist."
"I did."
"Tell me exactly what she said."
"She didn't think it was depression or menopause. She didn't really have an explanation. She thought I might not be getting enough sleep. She wanted to wait and see me in a couple of months."
"See, you're just not taking care of yourself."
"She's not a neurologist, John. I get plenty of sleep. And that was in November. It's been a couple of months, and it's not getting any better. It's getting worse."
She was asking him to believe in a single conversation what she had denied for months. She started with an example he already knew.
"Remember I didn't go to Chicago?"
"That could happen to me or anyone we know. We have insane schedules."
"We've always had insane schedules, but I've never forgotten to get on a plane. It's not like I just missed my flight, I completely forgot about the conference altogether, and I'd been preparing for it all day."
He waited. There were giant secrets he didn't know about.
"I forget words. I completely forgot the topic of the lecture I was supposed to give in the time it took to walk from my office to class, I can't decipher the intention behind words I write in the morning on my to-do list by the middle of the afternoon."
She could read his unconvinced mind. Overtired, stress, anxiety. Normal, normal, normal.
"I didn't make the pudding on Christmas Eve because I couldn't. I couldn't remember a single step of the recipe. It was just gone, and I've made that dessert from memory every year since I was a kid."
She presented a surprisingly solid case against herself. A jury of her peers might've heard enough. But John loved her.
"I was standing in front of Nini's in Harvard Square and had absolutely no idea how to get home. I couldn't figure out where I was."
"When was this?"
"September."
She broke his silence, but not his determination to defend the integrity of her mental health.
"That's only some of it. I'm terrified to think about what I'm forgetting that I'm not even aware of."
His expression shifted, as if he identified something potentially meaningful in the Rorschach-like smudges on one of his RNA films.
"Dan's wife." He said it more to himself than to her.
"What?" she asked.
Something cracked. She saw it. The possibility of it seeped in, diluting his conviction.
"I need to do some reading, and then I want to talk to your neurologist."
Without looking at her, he got up and went straight into the study, leaving her alone on the couch, hugging her knees, feeling like she needed to throw up.
FEBRUARY 2004
Friday:
Take your morning medications
Department meeting, 9:00, room 545
Return emails
Teach Motivation & Emotion Class, 1:00, Science Center,
Auditorium B ("Homeostasis and Drives" lecture)
Genetic counselor appointment (John has info)
Take your evening medications
Stephanie Aaron was the genetic counselor affiliated with Mass General Hospital's Memory Disorders Unit. She had shoulder-length black hair and arched eyebrows that suggested a curious openness. She greeted them with a warm smile.
"So, tell me why you're here today," Stephanie said.
"My wife was recently told she has Alzheimer's disease, and we want her screened for the APP, PS1, and PS2 mutations."
John had done his homework. He'd spent the last several weeks buried in literature on the molecular etiology of Alzheimer's. Errant proteins born from any of these three mutated genes were the known villains for the early-onset cases.
"Alice, tell me, what are you hoping to learn from the testing?" Stephanie asked.
"Well, it seems like a reasonable way to try to confirm my diagnosis. Certainly more so than a brain biopsy or an autopsy."
"Are you concerned that your diagnosis might be inaccurate?"
"We think it's a real possibility," said John.
"Okay, first, let's walk through what a positive versus a negative mutation screen would mean for you. These mutations are fully penetrant. If you're mutation positive for APP, PS1, or PS2, I would say that's a solid confirmation of your diagnosis. Things get a bit tricky, though, if your results come back negative. We can't really interpret with any certainty what that would mean. About fifty percent of people with early-onset Alzheimer's don't show a mutation in any of these three genes. This isn't to say that they don't actually have Alzheimer's or that their disease isn't genetically based, it's just that we don't yet know the gene in which their mutation resides."
"Isn't that number more like ten percent for someone her age?" asked John.
"The numbers are a bit more skewed for someone her age, that's true. But if Alice's screen comes back negative, we unfortunately can't say for sure that she doesn't have the disease. She may just happen to fall in the smaller percent of people that age with Alzheimer's who have a mutation in a gene not yet identified."
It was just as plausible, if not more so when coupled with Dr. Davis's medical opinion. Alice knew that John understood this, but his interpretation fit the null hypothesis of "Alice does not have Alzheimer's disease, our lives aren't ruined," whereas Stephanie's did not.
"Alice, does this all make sense to you?" Stephanie asked.
Although the context made the question legitimate, Alice resented it and glimpsed the subtext of conversations in her future. Was she competent enough to understand what was being said? Was she too brain-damaged and confused to consent to this? She'd always been addressed with great respect. If her mental prowess became increasingly replaced with mental illness, what would replace that great respect? Pity? Condescension? Embarrassment?
"Yes," said Alice.
"I also want to make it clear that if your screening comes back with a positive mutation, a genetic diagnosis isn't going to change anything about your treatment or prognosis."
"I understand."
"Good. Let's get some information on your family, then. Alice, are your parents living?"
"No. My mother died in a car accident when she was forty-one, and my father died last year at seventy-one of liver failure."
"How were their memories while they were alive? Did either of them show signs of dementia or personality changes?"
"My mother was perfectly fine. My father was a lifelong alcoholic. He'd always been a calm man, but he got extremely volatile as he got older, and it became impossible to have a coherent conversation with him. I don't think he recognized me at all for the last several years."
"Was he ever brought in to see a neurologist?"
"No. I'd assumed it was the drinking."
"When would you say these changes began?"
"Around his early fifties."
"He was blind drunk, every day. He died of cirrhosis, not Alzheimer's," said John.
Alice and Stephanie paused and silently agreed to let him think what he wanted and move on.
"Do you have any brothers or sisters?"
"My only sister died in that car accident with my mother when she was sixteen. I don't have any brothers."
"How about aunts, uncles, cousins, grandparents?"
Alice relayed her incomplete knowledge of the health and death histories of her grandparents and other relatives.
"Okay, if you don't have any other questions, a nurse is going to come in and draw a sample of blood. We'll send it off to be sequenced and should have the results within a couple of weeks."
Alice stared out the window as they drove down Storrow Drive. It was frigid outside, already dark at 5:30, and she didn't see anyone braving the elements along the edges of the Charles. No signs of life. John had the stereo turned off. There was nothing to distract her from thoughts of damaged DNA and necrotic brain tissue.
"It's going to be negative, Ali."
"But that wouldn't change anything. It wouldn't mean I don't have it."
"Not technically, but it creates a whole lot more room for thinking this is something else."
"Like what? You talked to Dr. Davis. He already tested me for every cause of dementia you could come up with."
"Look, I think you jumped the gun going to see a neurologist. He looks at your set of symptoms and sees Alzheimer's, but that's what he's trained to see, it doesn't mean he's right. Remember when you hurt your knee last year? If you'd gone to see an orthopedic surgeon, he would've seen a torn ligament or worn cartilage, and he would've wanted to cut you open. He's a surgeon, so he sees surgery as the solution. But you just stopped running for a couple of weeks, you rested it, took ibuprofen, and you were fine.
"I think you're exhausted and stressed, I think the hormonal changes from menopause are wreaking havoc on your physiology, and I think you're depressed. We can handle all of these, Ali, we just have to address each one."
He sounded right. It wasn't likely that someone her age would have Alzheimer's disease. She was menopausal, and she was exhausted. And maybe she was depressed. That would explain why she didn't push back on her diagnosis harder, why she didn't fight to the teeth against even the suggestion of this doomed fate. It certainly wasn't characteristic of her. Maybe she was stressed, tired, menopausal, and depressed. Maybe she didn't have Alzheimer's disease.
Thursday:
7:00, Take your morning medications
Complete Psychonomic review
11:00, meeting with Dan, my office
12:00, Lunch Seminar, room 700
3:00, Genetic counselor appointment (John has info)
8:00, Take your evening medications
Stephanie was sitting behind her desk when they came in, but this time, she didn't smile.
"Before we talk about your results, is there anything you'd like to review about any of the information we went over last time?" she asked.
"No," said Alice.
"Do you still want the results?"
"Yes."
"I'm sorry to tell you, Alice, you're positive for the PS1 mutation."
Well, there it was, absolute proof, served straight up, no sugar, no salt, no chaser. And it burned all the way down. She could go on a cocktail of estrogen replacement, Xanax, and Prozac and spend the next six months sleeping twelve hours a day at Canyon Ranch, and it wouldn't change a thing. She had Alzheimer's disease. She wanted to look at John, but she couldn't will herself to turn her head.
"As we talked about, this mutation is autosomal dominant; it's associated with certain development of Alzheimer's, so this result fits with the diagnosis you've already received."
"What's the lab's false positive rate? What's the name of the lab?" asked John.
"It's Athena Diagnostics, and they cite a greater than ninety-nine-percent accuracy level of detection for this mutation."
"John, it's positive," said Alice.
She looked at him now. His face, normally angular and determined, appeared slack and unfamiliar to her.
"I'm sorry, I know you were both searching for a way out of this diagnosis."
"What does this mean for our children?" asked Alice.
"Yes, there's a lot to think about there. How old are they?"
"They're all in their twenties."
"So we wouldn't expect any of them to be symptomatic yet. Each of your children has a fifty percent chance of inheriting this mutation, which has a one hundred percent chance of causing the disease. Presymptomatic genetic testing is possible, but there's a lot to consider. Is this something they'll want to live with knowing? How would it change their lives? What if one of them is positive and one is negative, how will that affect their relationship with each other? Alice, do they even know about your diagnosis?"
"No."
"You might want to think about telling them soon. I know it's a lot to unload all at once, especially since I know you're both still absorbing it yourselves. But with a progressive illness like this, you can lay out plans to tell them later, but then you may not be able to in the way you originally wanted. Or maybe this is something you're going to leave to John to do?"
"No, we'll tell them," said Alice.
"Do any of your children have children?"
Anna and Charlie.
"Not yet," said Alice.
"If they're planning to, this might be really important information for them to have. Here's some written information I gathered that you can give them if you want. Also, here's my card and the card of a therapist who's wonderful with talking to families who've gone through genetic screening and diagnosis. Are there any other questions that I can answer for you now?"
"No, none that I can think of."
"I'm sorry I couldn't give you the results you were hoping for."
"Me, too."
Neither of them spoke. They got in the car, John paid the garage attendant, and they made their way onto Storrow Drive in silence. For the second week in a row, temperatures were well below zero with the windchill. Runners were forced indoors to either jog on treadmills or simply wait for slightly more habitable weather. Alice hated treadmills. She sat in the passenger seat and waited for John to say something. But he didn't. He cried the whole way home.
MARCH 2004
Alice popped open the Monday lid of her plastic days-of-the-week pill dispenser and poured the seven little tablets into her cupped hand. John marched into the kitchen with purpose, but seeing what she held, he spun on his heels and left the room, as if he'd walked in on his mother naked. He refused to watch her take her medications. He could be midsentence, midconversation, but if she got out her plastic days-of-the-week pill dispenser, he left the room. Conversation over.
She swallowed the pills with three gulps of very hot tea and burned her throat. The experience wasn't exactly pleasant for her either. She sat down at the kitchen table, blew on her tea, and listened to John stomping through the bedroom above her.
"What are you looking for?" she yelled.
"Nothing," he hollered.
Probably his glasses. In the month since their visit to the genetic counselor, he'd stopped asking her for help finding his glasses and keys, even though she knew he still struggled to keep track of them.
He entered the kitchen with quick, impatient steps.
"Can I help?" she asked.
"No, I'm good."
She wondered about the source of this newfound stubborn independence. Was he trying to spare her the mental burden of tracking his own misplaced things? Was he practicing for his future without her? Was he just too embarrassed to ask for help from an Alzheimer's patient? She sipped her tea, engrossed in a painting of an apple and a pear that had been on the wall for at least a decade, and listened to him sift through the mail and papers on the counter behind her.
He walked past her into the front hallway. She heard the hall closet door open. She heard the hall closet door shut. She heard the drawers in the hall table open and close.
"You ready?" he called.
She finished her tea and met him in the hallway. He had his coat on, glasses perched on his ruffled hair, and his keys in his hand.
"Yes," said Alice, and she followed him outside.
The beginning of spring in Cambridge was an untrustworthy and ugly liar. There were no buds yet on the trees, no tulips brave or stupid enough to have emerged through the now month-old layer of crusted snow, and no spring peeper audio track playing in the background. The streets remained narrowed by blackened, polluted snowbanks. Any melting that occurred during the relative warmth of midday froze with the plummeting temperatures of late afternoon, turning the paths in Harvard Yard and the sidewalks of the city into treacherous lanes of black ice. The date on the calendar only made everyone feel offended or cheated, aware that it was already spring elsewhere, and there people wore short-sleeve shirts and awoke to the sounds of robins chirping. Here, the cold and misery showed no signs of relenting, and the only birds Alice heard as they walked to campus were crows.
John had agreed to walk with her to Harvard every morning. She'd told him she didn't want to risk getting lost. In truth, she simply wanted that time back with him, to rekindle their former morning tradition. Unfortunately, having deemed the risk of being run over by a car less than that of being injured from slipping on the icy sidewalks, they walked single file in the street, and they didn't talk.
Gravel kicked up into her right boot. She debated whether to stop in the road to empty it out or wait until they reached Jerri's. To empty it, she'd have to balance in the road on one foot while exposing the other to the frigid air. She decided to endure the discomfort for the remaining two blocks.
Located on Mass Ave about halfway between Porter and Harvard squares, Jerri's had become a Cambridge institution for the chronically caffeinated long before the invasion of Starbucks. The menu of coffee, tea, pastries, and sandwiches written in chalk capital lettering on the board behind the counter had remained unaltered since Alice's graduate student days. Only the prices next to the items showed signs of recent attention, outlined with chalk dust in the shape of a rectangular school eraser and printed in a penmanship belonging to someone other than the author of the offerings to their left. Alice studied the board, perplexed.
"Good morning, Jess, a coffee and a cinnamon scone, please," said John.
"I'll have the same," said Alice.
"You don't like coffee," said John.
"Yes, I do."
"No, you don't. She'll have a tea with lemon."
"I want a coffee and a scone."
Jess looked to John to see if there would be a return, but the volley was dead.
"Okay, two coffees and two scones," said Jess.
Outside, Alice took a sip. It tasted acrid and unpleasant and poorly reflected its delicious smell.
"So how's your coffee?" asked John.
"Wonderful."
As they walked to campus, Alice drank the coffee she hated to spite him. She couldn't wait to be alone in her office, where she could throw away what was left of the wretched beverage. Plus, she desperately wanted to empty the gravel out of her boot.
BOOTS OFF AND COFFEE IN the trash, she tackled her inbox first. She opened an email from Anna.
Hi Mom,We'd love to go to dinner, but this week is kind of tough with Charlie's trial. How about next week? What days are good for you and Dad? We're free any night but Thursday and Friday.Anna She stared down the tauntingly ready, blinking cursor on her computer screen and tried to imagine the words she wanted to use in her reply. The conversion of her thoughts to voice, pen, or computer keys often required conscious effort and calm coaxing. And she held little confidence in the spelling of words she'd long ago been rewarded for her mastery of with gold stars and teachers' praise.
The phone rang.
"Hi, Mom."
"Oh good, I was just about to return your email."
"I didn't send you an email."
Unsure of herself, Alice reread the message on her screen.
"I just read it. Charlie has a trial this week--"
"Mom, this is Lydia."
"Oh, what are you doing up so early?"
"I'm always up now. I wanted to call you and Dad last night, but it was too late your time. I just got an incredible part in a play called The Memory of Water. It's with this phenomenal director, and it's going up for six shows in May. I think it's going to be really good, and with this director it should get a lot of attention. I was hoping maybe you and Dad could come out to see me in it?"
Cued by the hanging rise in her inflection and the silence that followed, Alice knew it was her turn to speak but was still catching up to all that Lydia had just said. Without the aid of the visual cues of the person she talked to, conversations on the phone often baffled her. Words sometimes ran together, abrupt changes in topic were difficult for her to anticipate and follow, and her comprehension suffered. Although writing presented its own set of problems, she could keep them hidden from discovery because she wasn't restricted to real-time responding.
"If you don't want to, you can just say it," said Lydia.
"No, I do, but--"
"Or you're too busy, whatever. I knew I should've called Dad."
"Lydia--"
"Never mind, I gotta go."
She hung up. Alice had been about to say that she needed to check with John, that if he could break away from the lab, she'd love to come. If he couldn't go, however, she wouldn't fly across the country without him, and she'd have to make up some excuse. Fearful of getting lost or confused far from home, she'd been avoiding travel. She'd declined an offer to speak at Duke University next month and thrown out the registration material for a language conference she'd attended every year since she was a graduate student. She wanted to see Lydia's play, but this time, her attendance would be at the mercy of John's availability.
She held the phone, thinking about trying to call Lydia back. She hung up, thinking better of it. She closed her unwritten reply to Anna and opened a new email to send to Lydia. She stared at the blinking cursor, her fingers frozen on the keyboard. The battery in her brain was running low today.
"Come on," she urged, wishing she could attach a couple of jumper cables to her head and give herself a good, strong zap.
She didn't have time for Alzheimer's today. She had emails to return, a grant proposal to write, a class to teach, and a seminar to attend. And at the end of the day, a run. Maybe a run would give her some clarity.
ALICE TUCKED A PIECE OF paper with her name, address, and phone number in her sock. Of course, if she became so confused that she didn't know her way home, she might not have the presence of mind to remember that she carried this piece of helpful information on her person. But it was a precaution she took anyway.
Running was becoming less and less effective at clearing her thoughts. In fact, these days, she felt more like she was physically chasing down the answers to an interminable stream of runaway questions. And no matter how hard she kicked, she could never catch them.
What should I be doing? She took her medications, slept for six to seven hours a night, and clung to the normalcy of day-to-day life at Harvard. She felt like a fraud, posing as a Harvard professor without a progressive neurodegenerative disease, working every day as if everything were just fine and would continue that way.
There weren't a lot of metrics for performance or day-today accountability in the life of a professor. She didn't have books to balance, a certain quota of widgets to make, or written reports to hand in. There was room for error, but how much? Ultimately, her functioning would deteriorate to a level that would be noticed and not tolerated. She wanted to leave Harvard before then, before the gossip and pity, but had no way of even guessing when that would be.
And although the thought of staying on too long terrified her, the thought of leaving Harvard terrified her much, much more. Who was she if she wasn't a Harvard psychology professor?
Should she try to spend as much time as possible with John and her children? What would that mean practically? Sit with Anna while she typed her briefs, shadow Tom on his rounds, observe Lydia in acting class? How was she supposed to tell them that they each had a 50 percent chance of going through this? What if they blamed and hated her like she blamed and hated her father?
It was too soon for John to retire. How much time could he realistically take off without killing his own career? How much time did she have? Two years? Twenty?
Although Alzheimer's tended to progress more quickly in the early-onset versus late-onset form, people with early-onset usually lived with the disease for many years longer, this disease of the mind residing in relatively young and healthy bodies. She could stick around all the way to the brutal end. She'd be unable to feed herself, unable to talk, unable to recognize John and her children. She'd be curled up in the fetal position, and because she'd forget how to swallow, she'd develop pneumonia. And John, Anna, Tom, and Lydia would agree not to treat it with a simple course of antibiotics, riddled with guilt over feeling grateful that something had finally come along that would kill her body.
She stopped running, bent over, and threw up the lasagna she'd eaten for lunch. It would be several more weeks before the snow melted enough to wash it away.
SHE KNEW EXACTLY WHERE SHE was. She was on her way home, in front of the All Saints' Episcopal Church, only a few blocks from her house. She knew exactly where she was but had never felt more lost in her life. The bells of the church began to chime to a tune that reminded her of her grandparents' clock. She turned the round, iron knob on the tomato red door and followed her impulse inside.
She was relieved to find no one there, because she hadn't formulated a coherent story as to why she was. Her mother was Jewish, but her father had insisted that she and Anne be raised Catholic. So she went to mass every Sunday as a child, received communion, went to confession, and was confirmed, but because her mother never participated in any of this, Alice began questioning the validity of these beliefs at a young age. And without a satisfying answer from either her father or the Catholic Church, she never developed a true faith.
Light from the streetlamps outside streamed in through the Gothic stained-glass windows and provided almost enough illumination for her to see the entire church. In each of the stained-glass windows, Jesus, clad in robes of red and white, was pictured as a shepherd or a healer performing a miracle. A banner to the right of the altar read GOD IS OUR REFUGE AND STRENGTH, A VERY PRESENT HELP IN TROUBLE.
She couldn't be in more trouble and wanted so much to ask for help. But she felt like a trespasser, undeserving, unfaithful. Who was she to ask for help from a God she wasn't sure she believed in, in a church she knew nothing about?
She closed her eyes, listened to the calming, oceanlike waves of distant traffic, and tried to open her mind. She couldn't say how long she sat in the velvet-cushioned pew in that cold, darkened church, waiting for an answer. It didn't come. She stayed longer, hoping a priest or parishioner would wander in and ask her why she was there. Now, she had her explanation. But no one came.
She thought about the business cards she'd been given from Dr. Davis and Stephanie Aaron. Maybe she should talk to the social worker or a therapist. Maybe they could help her. Then, with complete and simple lucidity, the answer came to her.
Talk to John.
SHE FOUND HERSELF UNARMED FOR the attack she faced when she walked through the front door.
"Where have you been?" asked John.
"I went for a run."
"You've been running, this whole time?"
"I also went to church."
"Church? I can't take this, Ali. Look, you don't drink coffee, and you don't go to church."
She smelled the booze on his breath.
"Well, I did today."
"We were supposed to have dinner with Bob and Sarah. I had to call and cancel, didn't you remember?"
Dinner with their friends Bob and Sarah. It was on her calendar.
"I forgot. I have Alzheimer's."
"I had absolutely no idea where you were, if you were lost. You have to start carrying your cell phone with you at all times."
"I can't bring it with me when I run, I don't have any pockets."
"Then duct tape it to your head, I don't care, I'm not going through this every time you forget you're supposed to show up somewhere."
She followed him into the living room. He sat down on the couch, held his drink in his hand, and wouldn't look up at her. The beads of sweat on his forehead matched those on his sweaty glass of scotch. She hesitated, then sat on his lap, hugged him hard around his shoulders with her hands touching her own elbows, her ear against his, and let it all out.
"I'm so sorry I have this. I can't stand the thought of how much worse this is going to get. I can't stand the thought of looking at you someday, this face I love, and not knowing who you are."
She traced the outline of his jaw and chin and the creases of his sorely out of practice laugh lines with her hands. She wiped the sweat from his forehead and the tears from his eyes.
"I can barely breathe when I think about it. But we have to think about it. I don't know how much longer I have to know you. We need to talk about what's going to happen."
He tipped his glass back, swallowed until there was nothing left, and then sucked a little more from the ice. Then he looked at her with a scared and profound sorrow in his eyes that she'd never seen there before.
"I don't know if I can."
APRIL 2004
As smart as they were, they couldn't cobble together a definitive, long-term plan. There were too many unknowns to simply solve for x, the most crucial of those being, How fast will this progress? They'd taken a year's sabbatical together six years ago to write From Molecules to Mind, and so they were each a year away from being eligible for taking another. Could she make it that long? So far, they'd decided that she'd finish out the semester, avoid travel whenever possible, and they'd spend the entire summer at the Cape. They could only imagine as far as August.
And they agreed to tell no one yet, except for their children. That unavoidable disclosure, the conversation they had agonized over the most, would unfold that very morning over bagels, fruit salad, Mexican frittata, mimosas, and chocolate eggs.
They hadn't all been together for Easter in a number of years. Anna sometimes spent that weekend with Charlie's family in Pennsylvania, Lydia had stayed in L.A. the last several years and was somewhere in Europe before that, and John had attended a conference in Boulder a few years back. It had taken some work to persuade Lydia to come home this year. In the middle of rehearsals for her play, she'd claimed she couldn't afford the interruption or the flight, but John had convinced her that she could spare two days and paid for her airfare.
Anna declined a mimosa and a Bloody Mary and instead washed down the caramel eggs she'd been eating like popcorn with a glass of iced water. But before anyone could harbor suspicions of pregnancy, she launched into the details of her impending intrauterine insemination procedure.
"We saw a fertility specialist over at the Brigham, and he can't figure it out. My eggs are healthy, and I'm ovulating each month, and Charlie's sperm are fine."
"Anna, really, I don't think they want to hear about my sperm," said Charlie.
"Well, it's true, and it's so frustrating. I even tried acupuncture, and nothing. Except my migraines are gone. So at least we know that I should be able to get pregnant. I start FSH injections on Tuesday, and next week I inject myself with something that will release my eggs, and then they'll inseminate me with Charlie's sperm."
"Anna," said Charlie.
"Well, they will, and so hopefully, I'll be pregnant next week!"
Alice forced a supportive smile, caging her dread behind her clenched teeth. The symptoms of Alzheimer's disease didn't manifest until after the reproductive years, after the deformed gene had unwittingly been passed on to the next generation. What if she'd known that she carried this gene, this fate, in every cell of her body? Would she have conceived these children or taken precautions to prevent them? Would she have been willing to risk the random roll of meiosis? Her amber eyes, John's aquiline nose, and her presenilin-1. Of course, now, she couldn't imagine her life without them. But before she had children, before the experience of that primal and previously inconceivable kind of love that came with them, would she have decided it would be better for everyone not to? Would Anna?
Tom walked in, with apologies for being late and without his new girlfriend. It was just as well. Today should be just the family. And Alice couldn't remember her name. He made a beeline for the dining room, likely worried that he'd missed out on the food, then returned to the living room with a grin on his face and a plate heaping with some of everything. He sat on the couch next to Lydia, who had her script in her hand and her eyes closed, silently mouthing her lines. They were all there. It was time.
"Your dad and I have something important we need to talk to you about, and we wanted to wait until we had all three of you together."
She looked to John. He nodded and squeezed her hand.
"I've been experiencing some difficulties with my memory for some time now, and in January, I was diagnosed with early-onset Alzheimer's disease."
The clock on the fireplace mantel ticked loudly, like someone had turned its volume up, the way it sounded when no one else was in the house. Tom sat frozen with a forkful of frittata midway between his plate and mouth. She should have waited until he'd finished eating his brunch.
"Are they sure it's Alzheimer's? Did you get a second opinion?" he asked.
"She had genetic screening. She has the presenilin-1 mutation," said John.
"Is it autosomal dominant?" asked Tom.
"Yes."
He said more to Tom, but only with his eyes.
"What does that mean? Dad, what did you just tell him?" Anna asked.
"It means we have a fifty percent chance of getting Alzheimer's disease," said Tom.
"What about my baby?"
"You're not even pregnant," said Lydia.
"Anna, if you have the mutation, it's the same for your children. Each child you have would have a fifty percent chance of inheriting it, too," said Alice.
"So what do we do? Do we go get tested?" asked Anna.
"You can," said Alice.
"Oh my god, what if I have it? And then my baby could have it," said Anna.
"There'll probably be a cure by the time any of our kids would need it," said Tom.
"But not in time for us, is that what you're saying? So my kids will be fine, but I'll be a mindless zombie?"
"Anna, that's enough!" John snapped.
His jaw clenched, and his face flushed. A decade ago, he would've sent Anna to her room. Instead, he gave Alice's hand a hard squeeze and jiggled his leg. In so many ways, he'd become powerless.
"Sorry," said Anna.
"It's very likely that there'll be a preventative treatment by the time you're my age. That's one of the reasons to know if you have the mutation. If you do, you might be able to go on a medication well before you're symptomatic and, hopefully, you never will be," said Alice.
"Mom, what kind of treatment do they have now, for you?" asked Lydia.
"Well, they have me on antioxidant vitamins and aspirin, a statin, and two neurotransmitter drugs."
"Are those going to keep the Alzheimer's from getting any worse?" asked Lydia.
"Maybe, for a little while, they don't really know for sure."
"What about what's in clinical trials?" asked Tom.
"I'm looking into that now," said John.
John had begun talking to clinicians and scientists in Boston who researched the molecular etiology of Alzheimer's, getting their perspectives on the relative promise of the therapies in the clinical pipeline. John was a cancer cell biologist, not a neuroscientist, but it wasn't a huge leap for him to understand the cast of molecular criminals run amok in another system. They all spoke the same language--receptor binding, phosphorylation, transcriptional regulation, clathrin-coated pits, secretases. Like owning a membership card to the most exclusive club, being from Harvard gave him instant credibility with and access to the most respected thought leaders in Boston's Alzheimer's research community. If a better treatment existed or might exist soon, John would find it for her.
"But Mom, you seem perfectly fine. You must've caught this really early on, I wouldn't even know anything was wrong," said Tom.
"I knew," said Lydia. "Not that she had Alzheimer's, but that something was wrong."
"How?" asked Anna.
"Like sometimes she doesn't make any sense on the phone, and she repeats herself a lot. Or she doesn't remember something I said five minutes ago. And she didn't remember how to make the pudding at Christmas."
"How long have you noticed this?" asked John.
"At least a year now."
Alice couldn't trace it quite that far back herself, but she believed her. And she sensed John's humiliation.
"I have to know if I have this. I want to get tested. Don't you guys want to get tested?" asked Anna.
"I think living with the anxiety of not knowing would be worse for me than knowing, even if I have it," said Tom.
Lydia closed her eyes. Everyone waited. Alice entertained the absurd idea that she had either resumed memorizing her lines or fallen asleep. After an uncomfortable silence, she opened her eyes and took her turn.
"I don't want to know."
Lydia always did things differently.
IT WAS ODDLY QUIET IN William James Hall. The usual chatter of students in the hallways--asking, arguing, joking, complaining, bragging, flirting--was missing. Spring Reading Period typically precipitated the sudden sequestering of students from the campus at large into dormitory rooms and library cubicles, but that didn't begin for another week. Many of the cognitive psychology students were scheduled to spend an entire day observing functional MRI studies in Charlestown. Maybe that was today.
Whatever the reason, Alice relished the opportunity to get a lot of work done without interruption. She had opted not to stop at Jerri's for tea on the way to her office and wished now that she had. She could use the caffeine. She read through the articles in the current Linguistics Journal, she put together this year's version of the final exam for her motivation and emotion class, and she answered all previously neglected emails. All without the phone ringing or a knock on the door.
She was home before she realized that she'd forgotten to go to Jerri's. She still wanted that tea. She walked into the kitchen and put the kettle on the stove. The microwave clock read 4:22 a.m.
She looked out the window. She saw darkness and her reflection in the glass. She was wearing her nightgown.
Hi Mom,The IUI didn't work. I'm not pregnant. I'm not as upset as I thought I'd be (and Charlie seems almost relieved). Let's hope my other test comes back negative as well. Our appointment for that is tomorrow. Tom and I will come over after and let you and Dad know the results.Love,
Anna THE ODDS OF THEM BOTH being negative for the mutation descended from unlikely to remote when they still weren't home an hour after Alice had anticipated their arrival. If they were both negative, it would have been a quick appointment, a "you're both fine," "thank you very much," and out-the-door appointment. Maybe Stephanie was just running late today. Maybe Anna and Tom had sat in the waiting room much longer than Alice had allowed for in her mind.
The odds crashed from remote to infinitesimal when they finally walked through the front door. If they were both negative, they would have just blurted it out or it would have sprung, wild and jubilant, from their facial expressions. Instead, they muscled what they knew beneath the surface as they moved into the living room, stretching out the time of Life Before This Happened as long as possible, the time before they'd have to unleash the hideous information they so obviously held.
They sat side by side on the couch, Tom on the left and Anna on the right, like they had in the backseat of the car when they were kids. Tom was a lefty and liked the window, and Anna didn't mind the middle. They sat closer now than they ever did then, and when Tom reached over and held her hand, she didn't shriek, "Mommm, Tommy's touching me!"
"I don't have the mutation," said Tom.
"But I do," said Anna.
After Tom was born, Alice remembered feeling so blessed, that she had the ideal--one of each. It took twenty-six years for that blessing to deform into a curse. Alice's facade of stoic parental strength crumbled, and she started to cry.
"I'm sorry," she said.
"It's going to be okay, Mom. Like you said, they're going to find a preventative treatment," said Anna.
When Alice thought about it later, the irony was striking. Outwardly, at least, Anna appeared to be the strongest. She did most of the consoling. And yet, it didn't surprise her. Anna was the child who most mirrored their mother. She had Alice's hair, coloring, and temperament. And her mother's presenilin-1.
"I'm going to go ahead with the in vitro. I already talked with my doctor, and they're going to do a preimplantation genetic diagnosis on the embryos. They're going to test a single cell from each of the embryos for the mutation and only implant ones that are mutation-free. So we'll know for sure that my kids won't ever get this."
It was a solid piece of good news. But while everyone else continued to savor it, the taste turned slightly bitter for Alice. Despite her self-reproach, she envied Anna, that she could do what Alice couldn't--keep her children safe from harm. Anna would never have to sit opposite her daughter, her firstborn, and watch her struggle to comprehend the news that she would someday develop Alzheimer's. She wished that these kinds of advances in reproductive medicine had been available to her. But then the embryo that had developed into Anna would've been discarded.
According to Stephanie Aaron, Tom was okay, but he didn't look it. He looked pale, shaken, fragile. Alice had imagined that a negative result for any of them would be a relief, clean and simple. But they were a family, yoked by history and DNA and love. Anna was his older sister. She'd taught him how to snap and blow gum bubbles, and she always gave him her Halloween candy.
"Who's going to tell Lydia?" asked Tom.
"I will," said Anna.
MAY 2004
Alice first thought of peeking inside the week after she was diagnosed, but she didn't. Fortune cookies, horoscopes, tarot cards, and assisted living homes couldn't tempt her interest. Although closer to it every day, she was in no hurry to glimpse her future. Nothing in particular happened that morning to fuel her curiosity or the courage to go have a look inside the Mount Auburn Manor Nursing Center. But today, she did.
The lobby did nothing to intimidate her. An ocean scene watercolor hung on the wall, a faded Oriental carpet lay on the floor, and a woman with heavily made up eyes and short, licorice black hair sat behind a desk angled toward the front door. The lobby could almost be mistaken for that of a hotel, but the slight medicinal smell and the lack of luggage, concierge, and general coming and going weren't right. The people staying here were residents, not guests.
"Can I help you?" the woman asked.
"Um, yes. Do you care for Alzheimer's patients here?"
"Yes, we have a unit specifically dedicated to patients with Alzheimer's. Would you like to have a look at it?"
"Yes."
She followed the woman to the elevators.
"Are you looking for a parent?"
"I am," Alice lied.
They waited. Like most of the people they ferried, the elevators were old and slow to respond.
"That's a lovely necklace," said the woman.
"Thank you."
Alice placed her fingers on the top of her sternum and rubbed the blue paste stones on the wings of her mother's art nouveau butterfly necklace. Her mother used to wear it only on her anniversary and to weddings, and like her, Alice had reserved it exclusively for special occasions. But there weren't any formal affairs on her calendar, and she loved that necklace, so she'd tried it on one day last month while wearing a pair of jeans and a T-shirt. It had looked perfect.
Plus, she liked being reminded of butterflies. She remembered being six or seven and crying over the fates of the butterflies in her yard after learning that they lived for only a few days. Her mother had comforted her and told her not to be sad for the butterflies, that just because their lives were short didn't mean they were tragic. Watching them flying in the warm sun among the daisies in their garden, her mother had said to her, See, they have a beautiful life. Alice liked remembering that.
They exited onto the third floor and walked down a long, carpeted hallway through a set of unmarked double doors and stopped. The woman gestured back to the doors as they shut automatically behind them.
"The Alzheimer's Special Care Unit is locked, meaning you can't go beyond these doors without knowing the code."
Alice looked at the keypad on the wall next to the door. The numbers were arranged individually upside down and ordered backward from right to left.
"Why are the numbers like that?"
"Oh, that's to prevent the residents from learning and memorizing the code."
It seemed like an unnecessary precaution. If they could remember the code, they wouldn't need to be here, would they?
"I don't know if you've experienced this yet with your parent, but wandering and nighttime restlessness are very common behaviors with Alzheimer's. Our unit allows the residents to wander about at any time, but safely and without the risk of getting lost. We don't tranquilize them at night or restrict them to their rooms. We try to help them maintain as much freedom and independence as possible. It's something we know is important to them and to their families."
A small, white-haired woman in a pink and green floral housecoat confronted Alice.
"You're not my daughter."
"No, sorry, I'm not."
"Give me back my money!"
"She didn't take your money, Evelyn. Your money's in your room. Check your top dresser drawer, I think you put it there."
The woman eyed Alice with suspicion and disgust, but then followed the advice of authority and shuffled in her dirty white terry-cloth slippers back into her room.
"She has a twenty-dollar bill she keeps hiding because she's worried someone will steal it. Then, of course, she forgets where she put it and accuses everyone of taking it. We've tried to get her to spend it or put it in the bank, but she won't. At some point, she'll forget she owns it, and that'll be the end of it."
Safe from Evelyn's paranoid investigation, they proceeded unimpeded to a common room at the end of the hallway. The room was populated with elderly people eating lunch at round tables. Upon taking a closer look, Alice realized that the room was filled with elderly women.
"There are only three men?"
"Actually, only two out of the thirty-two residents are men. Harold comes every day to eat meals with his wife."
Perhaps reverting to the cootie rules of childhood, the two men with Alzheimer's disease sat together at their own table, apart from the women. Walkers crowded the spaces between the tables. Many of the women sat in wheelchairs. Most everyone had thinning white hair and sunken eyes magnified behind thick glasses, and they all ate in slow motion. There was no socializing, no conversation, not even between Harold and his wife. The only sounds other than the noises of eating came from a woman who sang while she ate, her internal needle skipping on the title line of "By the Light of the Silvery Moon" over and over. No one protested or applauded.
By the light of the silvery moon.
"As you might've guessed, this is our dining and activities room. Residents have breakfast, lunch, and dinner here at the same times every day. Predictable routines are important. Activities are here as well. There's bowling and beanbag toss, trivia, dancing and music, and crafts. They made these adorable birdhouses this morning. And we have someone read the newspaper to them every day to keep them up on current events."
By the light
"There's plenty of opportunity for our residents to keep their bodies and minds as engaged and enriched as possible."
of the silvery moon.
"And family members and friends are always welcome to come and participate in any of the activities and can join their loved one for any of the meals."
Aside from Harold, Alice saw no other loved ones. No other husbands, no wives, no children or grandchildren, no friends.
"We also have a highly trained medical staff should any of our residents require additional care."
By the light of the silvery moon.
"Do you have any residents here under the age of sixty?"
"Oh no, the youngest is I think seventy. The average age is about eighty-two, eighty-three. It's rare to see someone with Alzheimer's younger than sixty."
You're looking at one right now, lady.
By the light of the silvery moon.
"How much does all of this cost?"
"I can give you a packet of information on the way out, but as of January, the Alzheimer's Special Care Unit rate runs at two hundred eighty-five dollars a day."
Alice did the rough math in her head. About a hundred thousand dollars a year. Multiply that by five, ten, twenty years.
"Can I answer anything else for you?"
By the light.
"No, thanks."
She followed her tour guide back to the locked double doors and watched her type in the code.
0791925
She didn't belong here.
IT WAS THE RAREST OF days in Cambridge, the kind of mythical day that New Englanders dreamed about but each year came to doubt the true existence of--a sunny, seventy-degree spring day. A Crayola blue sky, finally-don't-need-a-coat spring day. A day not to be wasted sitting in an office, especially if you had Alzheimer's.
She deviated a couple of blocks southeast of the Yard and walked into Ben & Jerry's with the giddy thrill of a teenager playing hooky.
"I'll have a triple-scoop Peanut Butter Cup in a cone, please."
Hell, I'm on Lipitor.
She beheld her giant, heavy cone as if it were an Oscar, paid with a five-dollar bill, dropped the change in the Tips for College jar, and continued on toward the Charles River.
She'd converted to frozen yogurt, a supposedly healthier alternative, many years ago and had forgotten how thick and creamy and purely enjoyable ice cream was. She thought about what she had just seen at the Mount Auburn Manor Nursing Center as she licked and walked. She needed a better plan, one that didn't include her playing beanbag toss with Evelyn in the Alzheimer's Special Care Unit. One that didn't cost John a fortune to keep alive and safe a woman who no longer recognized him and who, in the most important ways, he didn't recognize either. She didn't want to be here at that point, when the burdens, both emotional and financial, grossly outweighed any benefit of sticking around.
She was making mistakes and struggling to compensate for them, but she felt sure that her IQ still fell at least a standard deviation above the mean. And people with average IQs didn't kill themselves. Well, some did, but not for reasons having to do with IQ.
Despite the escalating erosion of her memory, her brain still served her well in countless ways. For example, at this very moment, she ate her ice cream without dripping any of it onto the cone or her hand by using a lick-and-turn technique that had become automatic to her as a child and was probably stored somewhere near the information for how to ride a bike and how to tie a shoe. Meanwhile, she stepped off the curb and crossed the street, her motor cortex and cerebellum solving the complex mathematical equations necessary to move her body to the other side without falling over or getting hit by a passing car. She recognized the sweet smell of narcissus and a brief waft of curry emanating from the Indian restaurant on the corner. With each lick, she savored the delicious tastes of chocolate and peanut butter, demonstrating the intact activation of her brain's pleasure pathways, the same ones required for enjoying sex or a good bottle of wine.
But at some point, she would forget how to eat an ice-cream cone, how to tie her shoe, and how to walk. At some point, her pleasure neurons would become corrupted by an onslaught of aggregating amyloid, and she'd no longer be capable of enjoying the things she loved. At some point, there would simply be no point.
She wished she had cancer instead. She'd trade Alzheimer's for cancer in a heartbeat. She felt ashamed for wishing this, and it was certainly a pointless bargaining, but she permitted the fantasy anyway. With cancer, she'd have something that she could fight. There was surgery, radiation, and chemotherapy. There was the chance that she could win. Her family and the community at Harvard would rally behind her battle and consider it noble. And even if defeated in the end, she'd be able to look them knowingly in the eye and say good-bye before she left.
Alzheimer's disease was an entirely different kind of beast. There were no weapons that could slay it. Taking Aricept and Namenda felt like aiming a couple of leaky squirt guns in the face of a blazing fire. John continued to probe into the drugs in clinical development, but she doubted that any of them were ready and capable of making a significant difference for her, else he would already have been on the phone with Dr. Davis, insisting on a way to get her on them. Right now, everyone with Alzheimer's faced the same outcome, whether they were eighty-two or fifty, resident of the Mount Auburn Manor or full professor of psychology at Harvard University. The blazing fire consumed all. No one got out alive.
And while a bald head and a looped ribbon were seen as badges of courage and hope, her reluctant vocabulary and vanishing memories advertised mental instability and impending insanity. Those with cancer could expect to be supported by their community. Alice expected to be outcast. Even the well-intentioned and educated tended to keep a fearful distance from the mentally ill. She didn't want to become someone people avoided and feared.
Accepting the fact that she did indeed have Alzheimer's, that she could only bank on two unacceptably effective drugs available to treat it, and that she couldn't trade any of this in for some other, curable disease, what did she want? Assuming the in vitro procedure worked, she wanted to live to hold Anna's baby and know it was her grandchild. She wanted to see Lydia act in something she was proud of. She wanted to see Tom fall in love. She wanted one more sabbatical year with John. She wanted to read every book she could before she could no longer read.
She laughed a little, surprised at what she'd just revealed to herself. Nowhere in that list was there anything about linguistics, teaching, or Harvard. She ate her last bite of cone. She wanted more sunny, seventy-degree days and ice-cream cones.
And when the burden of her disease exceeded the pleasure of that ice cream, she wanted to die. But would she quite literally have the presence of mind to recognize it when those curves crossed? She worried that the future her would be incapable of remembering and executing this kind of plan. Asking John or any of her children to assist her with this in any way was not an option. She'd never put any of them in that position.
She needed a plan that committed the future her to a suicide she arranged for now. She needed to create a simple test, one that she could self-administer every day. She thought about the questions Dr. Davis and the neuropsychologist had asked her, the ones she already couldn't answer last December. She thought about what she still wanted. Intellectual brilliance wasn't required for any of them. She was willing to go on living with some serious holes in short-term memory.
She removed her BlackBerry from her baby blue Anna William bag, a birthday gift from Lydia. She wore it every day, slung over her left shoulder, resting on her right hip. It had become an indispensable accessory, like her platinum wedding ring and running watch. It looked great with her butterfly necklace. It contained her cell phone, her BlackBerry, and her keys. She took it off only to sleep.
She typed:
Alice, answer the following questions:
1. What month is it?
2. Where do you live?
3. Where is your office?
4. When is Anna's birthday?
5. How many children do you have?
If you have trouble answering any of these, go to the file named "Butterfly" on your computer and follow the instructions there immediately. She set the alarm to vibrate and to appear as a recurring reminder every morning on her appointment calendar at 8:00, no end date. She realized that there were a lot of potential problems with this design, that it was by no means foolproof. She just hoped she opened "Butterfly" before she became that fool.
SHE PRACTICALLY RAN TO CLASS, worried that she was most certainly late, but nothing had started without her when she got there. She took an aisle seat, four rows back, left of center. A few students trickled in through the doors at the back of the room, but for the most part, the class was there, ready. She looked at her watch. 10:05. The clock on the wall agreed. This was most unusual. She kept herself busy. She looked over the syllabus and skimmed her notes from last class. She made a to-do list for the rest of the day:
Lab
Seminar
Run
Study for final
Time, 10:10. She tapped her pen to the tune of "My Sharona."
The students stirred, becoming restless. They checked notebooks and the clock on the wall, they flipped through textbooks and shut them, they booted up laptops and clicked and typed. They finished their coffees. They crinkled wrappers belonging to candy bars and chips and various other snacks and ate them. They chewed pen caps and fingernails. They twisted their torsos to search the back of the room, they leaned to consult friends in other rows, they raised eyebrows and shrugged shoulders. They whispered and giggled.
"Maybe it's a guest lecturer," said a girl who sat a couple of rows behind Alice.
Alice unfolded her motivation and emotion syllabus again. Tuesday, May 4: Stress, Helplessness and Control (chapters 12 and 14). Nothing about a guest lecturer. The energy in the room converted from expectant to awkward dissonance. They were like corn kernels on a hot stove. Once that first one popped, the rest would follow, but no one knew which one would be first or when. The formal rule at Harvard stated that students were required to wait twenty minutes for a tardy professor before the class was officially canceled. Unafraid of going first, Alice closed her notebook, capped her pen, and slid everything into her book bag. 10:21. Long enough.
As she turned to leave, she looked at the four girls who sat behind her. They all looked up at her and smiled, probably grateful to her for releasing the pressure and setting them free. She held up her wrist, displaying the time as her irrefutable data.
"I don't know about you guys, but I have better things to do."
She walked up the stairs, exited the auditorium through the back doors, and never looked back.
SHE SAT IN HER OFFICE and watched the shiny rush-hour traffic creep along Memorial Drive. Her hip vibrated. It was 8:00 a.m. She removed her BlackBerry from her baby blue bag.
Alice, answer the following questions:
1. What month is it?
2. Where do you live?
3. Where is your office?
4. When is Anna's birthday?
5. How many children do you have?
If you have trouble answering any of these, go to the file named "Butterfly" on your computer and follow the instructions there immediately. May
34 Poplar Street, Cambridge, MA 02138
William James Hall, room 1002
September 14, 1976
Three
JUNE 2004
An unmistakably elderly woman with hot pink nails and lips tickled a little girl, about five years old, presumably the woman's granddaughter. Both looked to be having a grand old time. The advertisement read: "THE #1 TUMMY TICKLER takes the #1 prescribed Alzheimer's drug." Alice had been flipping through Boston magazine but was unable to move past this page. A hatred of that woman and the ad filled her like a hot liquid. She studied the picture and the words, waiting for her thoughts to catch up to what her gut understood, but before she could figure out why she felt so personally antagonized, Dr. Moyer opened the door to the examining room.
"So Alice, I see you're having some difficulty sleeping. Tell me what's going on."
"It's taking me well over an hour to get to sleep, and then I usually wake up a couple of hours after that and go through the whole thing all over again."
"Are you experiencing any hot flashes or physical discomfort at bedtime?"
"No."
"What medications are you taking?"
"Aricept, Namenda, Lipitor, vitamins C and E, and aspirin."
"Well, unfortunately, insomnia can be a side effect of the Aricept."
"Right, but I'm not going off Aricept."
"Tell me what you do when you can't get to sleep."
"Mostly I lie there and worry. I know this is going to get a lot worse, but I don't know when, and I worry that I might go to sleep and wake up the next morning and not know where I am or who I am or what I do. I know it's irrational, but I have this idea that the Alzheimer's can only kill off my brain cells when I'm asleep, and that as long as I'm awake and sort of on watch, I'll stay the same.
"I know all this anxiety keeps me up, but I can't seem to help it. As soon as I can't fall asleep, I worry, and then I can't sleep because I'm worried. It's exhausting just telling you about it."
Only some of what she'd just said was true. She did worry. But she'd been sleeping like a baby.
"Are you overcome with this kind of anxiety at any other time of the day?" asked Dr. Moyer.
"No."
"I could prescribe you an SSRI."
"I don't want to go on an antidepressant. I'm not depressed."
The truth was, she might be a little depressed. She'd been diagnosed with a fatal, incurable illness. So had her daughter. She'd almost entirely stopped traveling, her once dynamic lectures had become unbearably boring, and even on the rare occasion when he was home with her, John seemed a million miles away. So yes, she was a little sad. But that seemed an appropriate response given the situation and not a reason to add yet another medication, with more side effects, to her daily intake. And it wasn't what she'd come here for.
"We could try you on Restoril, one each night at bedtime. It'll get you to sleep quickly and allow you to stay asleep for about six hours, and you shouldn't wake up groggy in the morning."
"I'd like something stronger."
There was a long pause.
"I think I'd like you to make an appointment to come back in with your husband, and we can talk about prescribing something stronger."
"This doesn't concern my husband. I'm not depressed, and I'm not desperate. I'm aware of what I'm asking for, Tamara."
Dr. Moyer studied her face carefully. Alice studied hers. They were both older than forty, younger than old, both married, highly educated professional women. Alice didn't know her doctor's politics. She'd see another doctor if she had to. Her dementia was going to get worse. She couldn't risk waiting any longer. She might forget.
She had rehearsed additional dialogue but didn't need to use it. Dr. Moyer got out her prescription pad and began to write.
SHE WAS BACK IN THAT tiny testing room with Sarah Something, the neuropsychologist. She'd reintroduced herself to Alice just a moment ago, but Alice had promptly forgotten her last name. Not a good omen. The room, however, was as she remembered it from January--cramped, sterile, and impersonal. It contained one desk with an iMac computer on it, two cafeteria chairs, and a metal file cabinet. Nothing else. No windows, no plants, no pictures or calendar on the walls or desk. No distractions, no possible hints, no chance associations.
Sarah Something began with what felt almost like regular conversation.
"Alice, how old are you?"
"Fifty."
"When did you turn fifty?"
"October eleventh."
"And what time of year is this?"
"Spring, but it already feels like summer."
"I know, it's hot out there today. And where are we right now?"
"In the Memory Disorders Unit at Mass General Hospital, in Boston, Massachusetts."
"Can you name the four things shown in this picture?"
"A book, a phone, a horse, and a car."
"And what is this thing on my shirt?"
"A button."
"And this thing on my finger?"
"A ring."
"Can you spell 'water' backwards for me?"
"R-E-T-A-W."
"And repeat this after me: Who, what, when, where, why."
"Who, what, when, where, why."
"Can you lift your hand, close your eyes, and open your mouth?"
She did.
"Alice, what were those four objects in the picture you named before?"
"A horse, a car, a phone, and a book."
"Great, and write a sentence for me here."
I cannot believe that I won't be able to do this someday. "Great, now name for me as many words as you can in a minute that begin with the letter s."