"So tell us, Dad, tell us what we don't know," said the crying woman, her voice shaking and threatening.
The threat silenced him for a moment.
"I don't have time for this now, I have a meeting."
He got up and abandoned the argument, leaving the women and babies alone. He slammed the front door as he left the house, startling the baby in blue, which had just fallen asleep in the mother's arms. It wailed. As if it were contagious, the other woman began crying, too. Maybe she just felt left out. Now, everyone was crying--the pink baby, the blue baby, the mother, and the woman next to the mother. Everyone except Alice. She wasn't sad or angry or defeated or scared. She was hungry.
"What are we having for dinner?"
MAY 2005
They reached the counter after waiting a long time in a long line.
"All right, Alice, what do you want?" asked John.
"I'll have whatever you're having."
"I'm getting vanilla."
"That's fine, I'll have that."
"You don't want vanilla, you want something chocolate."
"Okay then, I'll have something chocolate."
It seemed simple and unproblematic enough to her, but he became visibly stressed by the exchange.
"I'll have a vanilla in a cone, and she'll have a chocolate fudge brownie in a cone, both large."
Away from the stores and crowded lines of people, they sat on a graffiti-covered bench on the edge of a river and ate their ice creams. Several geese nibbled in the grass just a few feet away. The geese kept their heads down, consumed in the business of nibbling, completely unbothered by Alice and John's presence. Alice giggled, wondering if the geese thought the same thing about them.
"Alice, do you know what month it is?"
It had rained earlier, but the sky was clear now, and the heat from the sun and the dry bench warmed her bones. It felt so good to be warm. Many of the pink and white blossoms from the crab apple tree next to them were scattered across the ground like party confetti.
"It's spring."
"What month of spring?"
Alice licked her something chocolate ice cream and carefully considered his question. She couldn't remember the last time she'd looked at a calendar. It had been a long time it seemed since she needed to be at a certain place at a certain time. Or if she did need to be somewhere on a certain day at a certain time, John knew about it for her and made sure she got there when she was supposed to. She didn't use an appointment machine, and she no longer wore a wrist clock.
Well, let's see. The months of the year.
"I don't know, what is it?"
"May."
"Oh."
"Do you know when Anna's birthday is?"
"Is it in May?"
"No."
"Well, I think Anne's birthday is in the spring."
"No, not Anne, Anna."
A yellow truck groaned loudly over the bridge near them and startled Alice. One of the geese spread its wings and honked at the truck, defending them. Alice wondered whether it was brave or a hothead, looking for a fight. She giggled, thinking about the feisty goose.
She licked her something chocolate ice cream and studied the architecture of the red-brick building across the river. It had many windows and a clock with old-fashioned numbers on a gold dome on its top. It looked important and familiar.
"What's that building over there?" asked Alice.
"That's the business school. It's part of Harvard."
"Oh. Did I teach in that building?"
"No, you taught in a different building on this side of the river."
"Oh."
"Alice, where's your office?"
"My office? It's at Harvard."
"Yes, but where at Harvard?"
"In a building on this side of the river."
"Which building?"
"It's in a hall, I think. You know, I don't go there anymore."
"I know."
"Then it really doesn't matter where it is, right? Why don't we focus on the things that really matter?"
"I'm trying."
He held her hand. His was warmer than hers. Her hand felt so good in his hand. Two of the geese waddled into the calm water. There were no people swimming in the river. It was probably too cold for people.
"Alice, do you still want to be here?"
His eyebrows bent into a serious shape, and the creases next to his eyes deepened. This question was important to him. She smiled, pleased with herself for finally having a confident answer for him.
"Yes. I like sitting here with you. And I'm not done yet."
She held up her something chocolate ice cream to show him. It had started to melt and drip down the sides of the cone onto her hand.
"Why, do we need to leave now?" she asked.
"No. Take your time."
JUNE 2005
Alice sat at her computer waiting for the screen to come to life. Cathy had just called, checking in, concerned. She said that Alice hadn't returned her emails in a while, that she hadn't been to the dementia chat room in weeks, and that she'd missed support group again yesterday. It wasn't until Cathy talked about support group that Alice knew who the concerned Cathy on the phone was. Cathy said that two new people had joined their support group, and that it had been recommended to them by people who'd attended the Dementia Care Conference and had heard Alice's speech. Alice told her that was wonderful news. She apologized to Cathy for worrying her and told her to let everyone know that she was okay.
But to tell the truth, she was very far from okay. She could still read and comprehend small amounts of text, but the computer keyboard had become an undecipherable jumble of letters. In truth, she'd lost the ability to compose words out of the alphabet letters on the keys. Her ability to use language, that thing that most separates humans from animals, was leaving her, and she was feeling less and less human as it departed. She'd said a tearful good-bye to okay some time ago.
She clicked on her mailbox. Seventy-three new emails. Overwhelmed and powerless to respond, she closed out of her email application without opening anything. She stared at the screen she'd spent much of her professional life in front of. Three folders sat on the desktop arranged in a vertical row: "Hard Drive," "Alice," "Butterfly." She clicked on the "Alice" folder.
Inside were more folders with different titles: "Abstracts," "Administrative," "Classes," "Conferences," "Figures," "Grant Proposals," "Home," "John," "Kids," "Lunch Seminars," "Molecules to Mind," "Papers," "Presentations," "Students." Her entire life organized into neat little icons. She couldn't bear to look inside, afraid she wouldn't remember or understand her entire life. She clicked on "Butterfly" instead.
Dear Alice,You wrote this letter to yourself when you were of sound mind. If you are reading this, and you are unable to answer one or more of the following questions, then you are no longer of sound mind: 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?
You have Alzheimer's disease. You have lost too much of yourself, too much of what you love, and you are not living the life you want to live. There is no good outcome to this disease, but you have chosen an outcome that is the most dignified, fair, and respectful to you and your family. You can no longer trust your own judgment, but you can trust mine, your former self, you before Alzheimer's took too much of you away.You lived an extraordinary and worthwhile life. You and your husband, John, have three healthy and amazing children, who are all loved and doing well in the world, and you had a remarkable career at Harvard filled with challenge, creativity, passion, and accomplishment.This last part of your life, the part with Alzheimer's, and this end that you've carefully chosen, is tragic, but you did not live a tragic life. I love you, and I'm proud of you, of how you've lived and all that you've done while you could.Now, go to your bedroom. Go to the black table next to the bed, the one with the blue lamp on it. Open the drawer to that table. In the back of the drawer is a bottle of pills. The bottle has a white label on it that says FOR ALICE in black letters. There are a lot of pills in that bottle. Swallow all of them with a big glass of water. Make sure you swallow all of them. Then, get in the bed and go to sleep.Go now, before you forget. And do not tell anyone what you're doing. Please trust me.Love,Alice Howland She read it again. She didn't remember writing it. She didn't know the answers to any of the questions but the one asking the number of children she had. But then, she probably knew that because she'd provided the answer in the letter. She couldn't be sure of their names. Anna and Charlie, maybe. She couldn't remember the other one.
She read it again, more slowly this time, if that was even possible. Reading on a computer screen was difficult, more difficult than reading on paper, where she could use a pen and highlighter. And paper she could take with her to her bedroom and read it there. She wanted to print it out but couldn't figure out how to make that happen. She wished her former self, she before Alzheimer's took too much of her away, had known to include instructions for printing it out.
She read it again. It was fascinating and surreal, like reading a diary that had been hers when she was a teenager, secret and heartfelt words written by a girl she only vaguely remembered. She wished she'd written more. Her words made her feel sad and proud, powerful and relieved. She took a deep breath, exhaled, and went upstairs.
She got to the top of the stairs and forgot what she had gone up there to do. It carried a sense of importance and urgency, but nothing else. She went back downstairs and looked for evidence of where she'd just been. She found the computer on with a letter to her displayed on the screen. She read it and went back upstairs.
She opened the drawer in a table next to the bed. She pulled out packets of tissues, pens, a stack of sticky paper, a bottle of lotion, a couple of cough candies, dental floss, and some coins. She spread everything out on the bed and touched each item, one at a time. Tissues, pen, pen, pen, sticky paper, coins, candy, candy, floss, lotion.
"Alice?"
"What?"
She spun around. John stood in the doorway.
"What are you doing up here?" he asked.
She looked at the items on the bed.
"Looking for something."
"I have to run back to the office to pick up a paper I forgot. I'm going to drive, so I'll only be gone for a few minutes."
"Okay."
"Here, it's time, take these before I forget."
He handed her a glass of water and a handful of pills. She swallowed each one.
"Thank you," she said.
"You're welcome. I'll be right back."
He took the empty glass from her and left the room. She lay down on the bed next to the former contents of the drawer and closed her eyes, feeling sad and proud, powerful and relieved as she waited.
"ALICE, PLEASE, PUT YOUR ROBE, hood, and cap on, we need to leave."
"Where are we going?" asked Alice.
"Harvard Commencement."
She inspected the costume again. She still didn't get it.
"What does commencement mean?"
"It's Harvard graduation day. Commencement means beginning."
Commencement. Graduation from Harvard. A beginning. She turned the word over in her mind. Graduation from Harvard marked a beginning, the beginning of adulthood, the beginning of professional life, the beginning of life after Harvard. Commencement. She liked the word and wanted to remember it.
They walked along a busy sidewalk wearing their dark pink costumes and plush black hats. She felt conspicuously ridiculous and entirely untrusting of John's wardrobe decision for the first several minutes of their walk. Then, suddenly, they were everywhere. Masses of people in similar costumes and hats but in a variety of colors funneled from every direction onto the sidewalk with them, and soon they were all walking in a rainbow costume parade.
They entered a grassy yard shaded by big, old trees and surrounded by big, old buildings to the slow, ceremonial sounds of bagpipes. Alice shivered with goose bumps. I've done this before. The procession led them to a row of chairs where they sat down.
"This is Harvard graduation," said Alice.
"Yes," said John.
"Commencement."
"Yes."
After some time, the speakers began. Harvard graduations past had featured many famous and powerful people, mostly political leaders.
"The king of Spain spoke here one year," said Alice.
"Yes," said John. He laughed a little, amused.
"Who is this man?" asked Alice, referring to the man at the podium.
"He's an actor," said John.
Now, Alice laughed, amused.
"I guess they couldn't get a king this year," said Alice.
"You know, your daughter is an actress. She could be up there someday," said John.
Alice listened to the actor. He was an easy and dynamic speaker. He kept talking about a picaresque.
"What's a picaresque?" asked Alice.
"It's a long adventure that teaches the hero lessons."
The actor talked about his life's adventure. He told them he was here today to pass on to them, the graduating classes, the people about to begin their own picaresques, the lessons he'd learned along his way. He gave them five: Be creative, be useful, be practical, be generous, and finish big.
I've been all those things, I think. Except, I haven't finished yet. I haven't finished big.
"That's good advice," said Alice.
"Yes, it is," said John.
They sat and listened and clapped and listened and clapped for longer than Alice cared to. Then, everyone stood and walked slowly in a less orderly parade. Alice and John and some of the others entered a nearby building. The magnificent entryway, with its staggeringly high, dark wooden ceiling and towering wall of sunlit stained glass, awed Alice. Huge, old, and heavy-looking chandeliers loomed over them.
"What is this?" asked Alice.
"This is Memorial Hall, it's part of Harvard."
To her disappointment, they spent no time in the magnificent entryway and moved immediately into a smaller, relatively unimpressive theater room, where they sat down.
"What's happening now?" asked Alice.
"The Graduate School of Arts and Sciences students are getting their Ph.D.s. We're here to see Dan graduate. He's your student."
She looked around the room at the faces of the people in the dark pink costumes. She didn't know which one was Dan. She didn't, in fact, recognize any of the faces, but she did recognize the emotion and the energy in the room. They were happy and hopeful, proud and relieved. They were ready and eager for new challenges, to discover and create and teach, to be the heroes in their own adventures.
What she saw in them, she recognized in herself. This was something she knew, this place, this excitement and readiness, this beginning. This had been the beginning of her adventure, too, and although she couldn't remember the details, she had an implicit knowing that it had been rich and worthwhile.
"There he is, on the stage," said John.
"Who?"
"Dan, your student."
"Which one?"
"The blond."
"Daniel Maloney," someone announced.
Dan stepped forward and shook hands with the man on the stage in exchange for a red folder. Dan then raised the red folder high over his head and smiled in glorious victory. For his joy, for all that he had surely achieved to be here, for the adventure that he would embark upon, Alice applauded him, this student of hers whom she had no memory of.
ALICE AND JOHN STOOD OUTSIDE under a big white tent among the students in dark pink costumes and the people who were happy for them and waited. A young, blond man approached Alice, grinning broadly. Unhesitating, he hugged her and kissed her on the cheek.
"I'm Dan Maloney, your student."
"Congratulations, Dan, I'm so happy for you," said Alice.
"Thank you so much. I'm so glad you were able to come and see me graduate. I feel so lucky to have been your student. I want you to know, you were the reason I chose linguistics as my field of study. Your passion for understanding how language works, your rigorous and collaborative approach to research, your love of teaching, you've inspired me in so many ways. Thank you for all your guidance and wisdom, for setting the bar so much higher than I thought I could reach, and for giving me plenty of room to run with my own ideas. You've been the best teacher I've ever had. If I achieve in my life a fraction of what you've accomplished in yours, I'll consider my life a success."
"You're welcome. Thank you for saying that. You know, I don't remember so well these days. I'm glad to know that you'll remember these things about me."
He handed her a white envelope.
"Here, I wrote it all down for you, everything I just said, so you can read it whenever you want and know what you gave to me even if you can't remember."
"Thank you."
They each held their envelopes, hers white and his red, with deep pride and reverence.
An older, heavier version of Dan and two women, one much older than the other, came over to them. The older, heavier version of Dan carried a tray of bubbly white wine in skinny glasses. The young woman handed a glass to each of them.
"To Dan," said the older, heavier version of Dan, holding up his glass.
"To Dan," said everyone, clinking the skinny glasses and taking sips.
"To auspicious beginnings," added Alice, "and finishing big."
THEY BEGAN WALKING AWAY FROM the tents and the old, brick buildings and the people in costumes and hats to where it was less populated and noisy. Someone in a black costume yelled and ran over to John. John stopped and let go of Alice's hand to shake hands with the person who'd yelled. Caught in her own forward momentum, Alice kept walking.
For a stretched-out second, Alice paused and made eye contact with a woman. She was sure she didn't know the woman, but there was meaning in the exchange. The woman had blond hair, a phone by her ear, and glasses over her big, blue, startled eyes. The woman was driving in a car.
Then, Alice's hood pulled suddenly tight around her throat, and she was jerked backward. She landed hard and unsuspecting on her back and banged her head on the ground. Her costume and plush hat offered little protection against the pavement.
"I'm sorry, Ali, are you okay?" asked a man in a dark pink robe, kneeling beside her.
"No," she said, sitting up and rubbing the back of her head. She expected to see blood on her hand but didn't.
"I'm sorry, you walked right into the street. That car almost hit you."
"Is she okay?"
It was the woman from the car, her eyes still big and startled.
"I think so," said the man.
"Oh my god, I could've killed her. If you didn't pull her out of the way, I might've killed her."
"It's okay, you didn't kill her, I think she's okay."
The man helped Alice stand. He felt and looked at her head.
"I think you're all right. You're probably going to be really sore. Can you walk?" he asked.
"Yes."
"Can I give you a ride somewhere?" asked the woman.
"No, no, that's all right, we're fine," said the man.
He put his arm around Alice's waist and his hand under her elbow, and she walked home with the kind stranger who had saved her life.
SUMMER 2005
Alice sat in a big, comfortable, white chair and puzzled over the clock on the wall. It was the kind with hands and numbers, which was much harder to read than the kind with just numbers. Five maybe?
"What time is it?" she asked the man sitting in the other big, white chair.
He looked at his wrist.
"Almost three thirty."
"I think it's time for me to go home."
"You are home. This is your home on the Cape."
She looked around the room--the white furniture, the pictures of lighthouses and beaches on the walls, the giant windows, the spindly little trees outside the windows.
"No, this isn't my house. I don't live here. I want to go home now."
"We're going back to Cambridge in a couple of weeks. We're here on vacation. You like it here."
The man in the chair continued reading his book and drinking his drink. The book was thick and the drink was yellowish brown, like the color of her eyes, with ice in it. He was enjoying and absorbed in both, the book and the drink.
The white furniture, the pictures of lighthouses and beaches on the walls, the giant windows, and the spindly little trees outside the windows didn't look at all familiar to her. The sounds here weren't familiar to her either. She heard birds, the kinds that live at the ocean, the sound of the ice swirling and clinking in the glass when the man in the chair drank his drink, the sound of the man breathing through his nose as he read his book, and the ticking of the clock.
"I think I've been here long enough. I'd like to go home now."
"You are home. This is your vacation home. This is where we come to relax and unwind."
This place didn't look like her home or sound like her home, and she didn't feel relaxed. The man reading and drinking in the big, white chair didn't know what he was talking about. Maybe he was drunk.
The man breathed and read and drank, and the clock ticked. Alice sat in the big, white chair and listened to the time go by, wishing someone would take her home.
SHE SAT IN ONE OF the white, wooden chairs on a deck drinking iced tea and listening to the shrill cross talk of unseen frogs and twilight bugs.
"Hey, Alice, I found your butterfly necklace," said the man who owned the house.
He dangled a jeweled butterfly by a silver chain in front of her.
"That's not my necklace, that's my mother's. And it's special, so you'd better put it back, we're not supposed to play with it."
"I talked to your mom, and she said that you could have it. She's giving it to you."
She studied his eyes and mouth and body language, looking for some sign that would give away his motive. But before she could get a proper read on his sincerity, the beauty of the sparkling blue butterfly seduced her, overriding her rule-abiding concerns.
"She said I could have it?"
"Uh-huh."
He leaned over her from behind and fastened it around her neck. She ran her fingers over the blue gems on the wings, the silver body, and the diamond-studded antennae. She felt a smug thrill rush through her. Anne's going to be so jealous.
SHE SAT ON THE FLOOR in front of the full-length mirror in the bedroom she slept in and examined her reflection. The girl in the mirror had sunken, darkened circles under her eyes. Her skin looked loose and spotty all over and wrinkled at the corners of her eyes and along her forehead. Her thick, scraggly eyebrows needed to be tweezed. Her curly hair was mostly black, but it was also noticeably gray. The girl in the mirror looked ugly and old.
She ran her fingers over her cheeks and forehead, feeling her face on her fingers and her fingers on her face. That can't be me. What's wrong with my face? The girl in the mirror sickened her.
She found the bathroom and flicked on the light. She met the same image in the mirror over the sink. There were her golden brown eyes, her serious nose, her heart-shaped lips, but everything else, the composition around her features, was grotesquely wrong. She ran her fingers over the smooth, cool glass. What's wrong with these mirrors?
The bathroom didn't smell right either. Two shiny, white step stools, a brush, and a bucket sat on sheets of newspaper on the floor behind her. She squatted down and breathed in through her serious nose. She pried the lid off the bucket, dipped the brush in, and watched creamy white paint dribble down.
She started with the ones she knew were defective, the one in the bathroom and the one in the bedroom she slept in. She found four more before she was finished and painted them all white.
SHE SAT IN A BIG, white chair, and the man who owned the house sat in the other one. The man who owned the house was reading a book and drinking a drink. The book was thick and the drink was yellowish brown with ice in it.
She picked up an even thicker book than the one the man was reading from the coffee table and thumbed through it. Her eyes paused on diagrams of words and letters connected to other words and letters by arrows, dashes, and little lollipops. She landed on individual words as she browsed through the pages--disinhibition, phosphorylation, genes, acetylcholine, priming, transience, demons, morphemes, phonological.
"I think I've read this book before," said Alice.
The man looked over at the book she held and then at her.
"You've done more than that. You wrote it. You and I wrote that book together."
Hesitant to take him at his word, she closed the book and read the shiny blue cover. From Molecules to Mind by John Howland, Ph.D. and Alice Howland, Ph.D. She looked up at the man in the chair. He's John. She flipped to the front pages. "Table of Contents. Mood and Emotion, Motivation, Arousal and Attention, Memory, Language." Language.
She opened the book to somewhere near the end. "An infinite possibility of expression, learned yet instinctive, semanticity, syntax, case grammar, irregular verbs, effortless and automatic, universal." The words she read seemed to push past the choking weeds and sludge in her mind to a place that was pristine and still intact, hanging on.
"John," she said.
"Yes."
He put his book down and sat up straight at the edge of his big, white chair.
"I wrote this book with you," she said.
"Yes."
"I remember. I remember you. I remember I used to be very smart."
"Yes, you were, you were the smartest person I've ever known."
This thick book with the shiny blue cover represented so much of what she used to be. I used to know how the mind handled language, and I could communicate what I knew. I used to be someone who knew a lot. No one asks for my opinion or advice anymore. I miss that. I used to be curious and independent and confident. I miss being sure of things. There's no peace in being unsure of everything all the time. I miss doing everything easily. I miss being a part of what's happening. I miss feeling wanted. I miss my life and my family. I loved my life and family.
She wanted to tell him everything she remembered and thought, but she couldn't send all those memories and thoughts, composed of so many words, phrases, and sentences, past the choking weeds and sludge into audible sound. She boiled it down and put all her effort into what was most essential. The rest would have to remain in the pristine place, hanging on.
"I miss myself."
"I miss you, too, Ali, so much."
"I never planned to get like this."
"I know."
SEPTEMBER 2005
John sat at the end of a long table and took a large sip from his black coffee. It tasted extremely strong and bitter, but he didn't care. He didn't drink it for its taste. He'd drink it faster if he could, but it was scalding hot. He'd need two or three more large cups before he'd become fully alert and functional.
Most of the people who came in bought their caffeine to go and hurried on their way. John didn't have lab meeting for another hour, and he felt no compelling pressure to get to his office early today. He was content to take his time, eat his cinnamon scone, drink his coffee, and read the New York Times.
He opened to the "Health" section first, as he'd done with every newspaper he'd read for over a year now, a habit that had long ago replaced most of the hope that originally inspired the behavior. He read the first article on the page and cried openly as his coffee cooled.
AMYLIX FAILS TRIALAccording to the results of Synapson's Phase III study, patients with mild to moderate Alzheimer's disease who took Amylix during the fifteen-month trial failed to show a significant stabilization of dementia symptoms compared with placebo.Amylix is a selective amyloid-beta-lowering agent. By binding soluble Abeta 42, this experimental drug's aim is to stop progression of the disease, and it is unlike the drugs currently available to patients with Alzheimer's, which can at best only delay the disease's ultimate course.The drug was well tolerated and sailed through Phases I and II with much clinical promise and Wall Street expectation. But after a little over a year on the medication, the cognitive functioning of the patients receiving even the highest dose of Amylix failed to show improvement or stabilization as measured by the Alzheimer's Disease Assessment Scale and scores on Activities of Daily Living, and they declined at a rate that was significant and expected.
EPILOGUE
Alice sat on a bench with the woman and watched the children walking by them. Not really children. They weren't the kind of small children who lived at home with their mothers. What were they? Medium children.
She studied the faces of the medium children as they walked. Serious, busy. Heavy-headed. Headed on their way somewhere. There were other benches nearby, but none of the medium children stopped to sit. Everyone walked, busy on their way to where they must go.
She didn't need to go anywhere. She felt lucky about this. She and the woman she sat with listened to the girl with very long hair play her music and sing. The girl had a lovely voice and big, happy teeth and a lot of skirt with flowers all over it that Alice admired.
Alice hummed along to the music. She liked the sound of her hum blended with the voice of the singing girl.
"Okay, Alice, Lydia will be home any minute. You want to pay Sonya before we go?" asked the woman.
The woman was standing, smiling, and holding money. Alice felt invited to join her. She got up, and the woman handed her the money. Alice dropped it in the black hat on the brick ground by the singing girl's feet. The singing girl kept playing her music but stopped singing for a moment to talk to them.
"Thanks, Alice, thanks, Carole, see you soon!"
As Alice walked with the woman among the medium children, the music became quieter behind them. Alice didn't really want to leave, but the woman was going, and Alice knew she should stay with her. The woman was cheerful and kind and always knew what to do, which Alice appreciated because she often didn't.
After walking for some time, Alice spotted the red clown car and the big nail polish car parked in the driveway.
"They're both here," said the woman, seeing the same cars.
Alice felt excited and hurried into the house. The mother was in the hallway.
"My meeting ended quicker than I thought it would so I came back. Thanks for filling in," said the mother.
"No problem. I stripped her bed but didn't have a chance to remake it. Everything's still in the dryer," said the woman.
"Okay, thanks, I'll get it."
"She had another good day."
"No wandering?"
"Nope. She's my trusty shadow now. My partner in crime. Right, Alice?"
The woman smiled, nodding enthusiastically. Alice smiled and nodded back. She had no idea what she was agreeing to, but it was probably fine with her if the woman thought so.
The woman began collecting books and bags by the front door.
"Is John coming up tomorrow?" asked the woman.
A baby they couldn't see started crying, and the mother disappeared into another room.
"No, but we've got it covered," said the mother's voice.
The mother came back carrying a baby dressed in blue, kissing him repeatedly on the neck. The baby still cried, but his heart really wasn't in it anymore. The mother's fast kisses were working. The mother plugged a sucking thing into the baby's mouth.
"You're okay, little goose. Thanks, Carole, so much. You're a godsend. Have a great weekend, see you Monday."
"See you Monday. Bye, Lydia!" the woman yelled.
"Bye, thanks, Carole!" a voice yelled from somewhere in the house.
The baby's big, round eyes met Alice's, and he smiled in recognition behind his sucking thing. Alice smiled back, and the baby responded with a wide-mouthed laugh. The sucking thing fell to the floor. The mother squatted down and picked it up.
"Mom, you want to hold him for me?"
The mother passed the baby to Alice, and he slid comfortably into her arms and on her hip. He began pawing at her face with one of his wet hands. He liked doing this, and Alice liked letting him. He grabbed her bottom lip. She pretended to bite it and eat it while making wild animal noises. He laughed and moved on to her nose. She sniffed and sniffed and pretended to sneeze. He moved up to her eyes. She squinted so she wouldn't get poked and blinked to try to tickle his hand with her eyelashes. He moved his hand up her forehead to her hair, tightened his little fist, and pulled. She gently unclenched his hand and replaced her hair with her index finger. He found her necklace.
"See the pretty butterfly?"
"Don't let him put that in his mouth!" called the mother, who was in another room but within eyeshot.
Alice wasn't about to let the baby mouth her necklace, and she felt wrongly accused. She walked into the room where the mother was. It was crowded with all kinds of birthday party-colored baby-seat things that beeped and buzzed and talked when the babies banged on them. Alice had forgotten that this was the room with all the loud seats. She wanted to leave before the mother suggested she put the baby in one of them. But the actress was in here, too, and Alice wanted to be in their company.
"Is Dad coming this weekend?" asked the actress.
"No, he can't, he said next week. Can I leave them with you and Mom for a little while? I need to go to the store. Allison should sleep another hour."
"Sure."
"I'll be quick. Need anything?" the mother asked as she walked out of the room.
"More ice cream, something chocolate!" yelled the actress.
Alice found a soft toy with no noisy buttons and sat down while the baby explored it in her lap. She smelled the top of his almost-bald head and watched the actress read. The actress looked up at her.
"Hey, Mom, will you listen to me do this monologue I'm working on for class and tell me what you think it's about? Not the story, it's kind of long. You don't have to remember the words, just tell me what you think it's about emotionally. When I'm done, tell me how I made you feel, okay?"
Alice nodded, and the actress began. Alice watched and listened and focused beyond the words the actress spoke. She saw her eyes become desperate, searching, pleading for truth. She saw them land softly and gratefully on it. Her voice felt at first tentative and scared. Slowly, and without getting louder, it grew more confident and then joyful, playing sometimes like a song. Her eyebrows and shoulders and hands softened and opened, asking for acceptance and offering forgiveness. Her voice and body created an energy that filled Alice and moved her to tears. She squeezed the beautiful baby in her lap and kissed his sweet-smelling head.
The actress stopped and came back into herself. She looked at Alice and waited.
"Okay, what do you feel?"
"I feel love. It's about love."
The actress squealed, rushed over to Alice, kissed her on the cheek, and smiled, every crease of her face delighted.
"Did I get it right?" asked Alice.
"You did, Mom. You got it exactly right."
POSTSCRIPT
The clinical trial drug Amylix, described in this book, is fictional. It is, however, similar to real compounds in clinical development that aim to selectively lower levels of amyloid-beta 42. Unlike the currently available drugs, which can only delay the disease's ultimate progression, it is hoped that these drugs will stop the progression of Alzheimer's. All other drugs mentioned are real, and the depiction of their use and efficacy in the treatment of Alzheimer's disease is accurate as of the writing of this story.
For more information about Alzheimer's disease and clinical trials, go to http://www.alz.org/alzheimers_disease_clinical_studies.asp.
Readers Club Guide for
Still Alice
by Lisa Genova
Discussion Questions
1. When Alice becomes disoriented in Harvard Square, a place she's visited daily for twenty-five years, why doesn't she tell John? Is she too afraid to face a possible illness, worried about his possible reaction, or some other reason?
2. After Alice first learns she has Alzheimer's disease, "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". What do you think of Alice's reaction to the diagnosis? Why does she disassociate herself to the extent that she feels she's having an out-of-body experience?
3. Do you find irony in the fact that Alice, a Harvard professor and researcher, suffers from a disease that causes her brain to atrophy? Why do you think the author, Lisa Genova, chose this profession? How does her past academic success affect Alice's ability, and that of her family, to cope with Alzheimer's?
4. "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". Is John's reaction understandable? What might be the significance of his frequently fiddling with his wedding ring when Alice's health is discussed?
5. When Alice's three children, Anna, Tom, and Lydia, find out they can be tested for the genetic mutation that causes Alzheimer's, only Lydia decides she doesn't want to know. Why does she decline? Would you want to know if you had the gene?
6. Why is her mother's butterfly necklace so important to Alice? Is it only because she misses her mother? Does Alice feel a connection to butterflies beyond the necklace?
7. Alice decides she wants to spend her remaining time with her family and her books. Considering her devotion and passion for her work, why doesn't her research make the list of priorities? Does Alice most identify herself as a mother, wife, or scholar?
8. Were you surprised at Alice's plan to overdose on sleeping pills once her disease progressed to an advanced stage? Is this decision in character? Why does she make this difficult choice? If they found out, would her family approve?
9. As the symptoms worsen, Alice begins to feel as if she's living in one of Lydia's plays: "(Interior of Doctor's Office. The neurologist left the room. The husband spun his ring. The woman hoped for a cure.)". Is this thought process a sign of the disease, or does pretending it's not happening to her make it easier for Alice to deal with reality?
10. Do Alice's relationships with her children differ? Why does she read Lydia's diary? And does Lydia decide to attend college only to honor her mother?
11. Alice's mother and sister died when she was only a freshman in college, and yet Alice has to keep reminding herself they're not about to walk through the door. As the symptoms worsen, why does Alice think more about her mother and sister? Is it because her older memories are more accessible, she's thinking of happier times, or she's worried about her own mortality?
12. Alice and the members of her support group, Mary, Cathy, and Dan, all discuss how their reputations suffered prior to their diagnoses because people thought they were being difficult or possibly had substance abuse problems. Is preserving their legacies one of the biggest obstacles to people suffering from Alzheimer's disease? What examples are there of people still respecting Alice's wishes, and at what times is she ignored?
13. "One last sabbatical year together. She wouldn't trade that in for anything. Apparently, he would". Why does John decide to keep working? Is it fair for him to seek the job in New York considering Alice probably won't know her whereabouts by the time they move? Is he correct when he tells the children she would not want him to sacrifice his work?
14. Why does Lisa Genova choose to end the novel with John reading that Amylix, the medicine that Alice was taking, failed to stabilize Alzheimer's patients? Why does this news cause John to cry?
15. Alice's doctor tells her, "...you may not be the most reliable source of what's been going on". Yet, Lisa Genova chose to tell the story from Alice's point of view. As Alice's disease worsens, her perceptions indeed get less reliable. Why would the author choose to stay in Alice's perspective? What do we gain, and what do we lose?
Enhance Your Book Club
1. If you'd like to learn more about Alzheimer's or help those suffering from the disease, please visit www.actionalz.org or www.alz.org.
2. The Harvard University setting plays an important role in Still Alice. If you live in the Cambridge area, hold your meeting in one of the Harvard Square cafes. If not, you can take a virtual tour of the university at www.hno.harvard.edu/tour/guide.html.
3. In order to help her mother, Lydia makes a documentary of the Howlands' lives. Make one of your own family and then share the videos with the group.
4. To learn more about Still Alice or to get in touch with Lisa Genova, visit www.StillAlice.com.
A Conversation with Lisa Genova
What is Still Alice about?
Still Alice is about a young woman's descent into dementia through early-onset Alzheimer's disease. Alice is a fifty-year-old psychology professor at Harvard when she starts experiencing moments of forgetting and confusion. But, like most busy, professional people her age would, she at first attributes these signs to normal aging, too much stress, not enough sleep, and so on. But as things get worse, as things do with this disease, she eventually sees a neurologist and learns that she has early-onset Alzheimer's.
As Alice loses her ability to rely on her own thoughts and memories, as she loses her cerebral life at Harvard, where she'd placed all her worth and identity, she is forced to search for answers to questions like "Who am I now?" and "How do I matter?" As the disease worsens and continues to steal pieces of what she'd always thought of as her self, we see her discover that she is more than what she can remember.
What inspired you to write Still Alice?
There were a few things, but the main one was my grandmother had Alzheimer's in her eighties. Looking back, I'm sure she'd had it for years before our family finally opened our eyes to it. There's a level of forgetting that's considered normal for aging grandparents, so you let a lot go by. By the time we were caring for her, she was pretty far along into the disease. And it hit us hard. She'd always been an intelligent, independent, vibrant, and active woman. And we watched this disease systematically disassemble her. She didn't know her kids' names, that she'd even had them (she had nine), where she lived, to go to the bathroom when she needed to, she didn't recognize her own face in the mirror. I used to watch her fuss over these plastic baby dolls as if they were real babies. It was heartbreaking. And yet, I also found it oddly fascinating. I was in graduate school at the time, getting my Ph.D. in neuroscience at Harvard. And so the neuroscientist in me wondered what was going on in her brain. We could see the results of the destruction on the outside. I wondered about the chains of events that were causing the destruction on the inside. And I wondered what it must be like when those parts of the brain that are responsible for your own awareness and identity are no longer accessible. I kept wondering: What is having Alzheimer's disease like from the point of view of the person with Alzheimer's? My grandmother was too far along to communicate an answer to this question, but someone with early-onset, in the early stages, would be able to. This was the seed for Still Alice.
Did your professional background help in the writing of Still Alice?
Yes, it did. I think the most important way it helped was, over and over again, it gave me access to the right people to talk to. The Ph.D. in neuroscience from Harvard was like a golden, all-access pass. From the clinical side--the chief of neurology at Brigham and Women's Hospital in Boston, neuropsychological testing at Mass General, genetic counselors, caregiver support group leaders, and the world's thought leaders in Alzheimer's research, to the patient side--people living with disease and their caregivers, my professional background and credentials gave people the assurance they needed to feel comfortable letting me in and revealing what they know.
And, in my conversations with physicians and scientists, having an understanding of the molecular biology of this disease certainly gave me the knowledge and the vocabulary to ask the right kinds of questions and the ability to understand the implications of their answers.
How did you get involved with the National Alzheimer's Association?
Before Still Alice was even published, it seemed to me that I'd created a story that, although fictional, was in fact a truthful and respectful depiction of life with Alzheimer's. And it was unique in that it presented this depiction from the point of view of the person with Alzheimer's, rather than the caregiver. The lion's share of information written about Alzheimer's is from the point of view of the caregiver.
So I thought the Alzheimer's Association might be interested in the book in some way, perhaps endorsing it or providing a link to it from their website. I contacted their marketing department and gave them the link to the book's website, which I'd also created before the book was published. They responded by saying that they don't normally consider "partnering" with books, but they asked for a copy of the manuscript. Soon after that, their marketing rep contacted me, saying they loved the book. They wanted to give it their stamp of approval and asked if I would write the blog for the nationwide Voice Open Move campaign they were launching at the end of that month.
That really forced me to make a decision about the book. Still Alice wasn't published yet. It could take years for it to find a publishing house and become available to readers. Realizing that I'd created something that the Alzheimer's Association thought was valuable, that could help educate and reassure the millions of people trying to navigate a world with Alzheimer's, I felt an urgent responsibility to get the book out immediately. So I said yes to the blog and yes to the affiliation. I then self-published Still Alice. It was an opportunity I couldn't pass up.
How did you decide what information was crucial to include in Still Alice?
I knew I'd never be able to capture everyone's experience with Alzheimer's. But I knew I could capture the essence of it. And I checked in regularly with people who have early-onset Alzheimer's to make sure it all rang true. They were my litmus test. The earliest symptoms were important to portray, to show how they are deflected and denied. I felt a duty to show what the diagnosis process should look like. For so many people with early-onset, the road to a diagnosis of Alzheimer's is long and incredibly arduous, the symptoms often mistaken for other potential culprits, like depression, for years. This is probably the only place in the book I deviated from representing the truth as it plays out for most people. I gave Alice a straight-and-narrow shot to diagnosis, both in the interest of providing an example of what should happen and of creating a story that wasn't five hundred pages long. I also felt it was important for Alice to consider suicide. I thought long and hard about the decision to include this. As with the death penalty or abortion, people have very strong opinions about the right to end your own life when faced with a terminal illness, and I didn't want to alienate any readers. But I found that everyone I knew diagnosed with Alzheimer's under the age of sixty-five had considered suicide. That's extraordinary. The average fifty-year-old doesn't think about killing himself, but every fifty-year-old with Alzheimer's does. This is where this disease forces you to go. So I felt Alice had to go there as well.
Are you working on any current writing projects?
I've begun writing my next novel, Left Neglected. This is a story about a woman in her midthirties who is like so many women I know today--multitasking all day long, trying to be everything to everyone at work and at home, spread extremely thin. One typical morning, late for work, racing in her car after dropping her kids off at school and day care, she tries to phone in to a meeting she should already be at when she takes her eyes off the road for one second too long. And in that blink of an eye, all the rapidly moving parts of her overscheduled life come to a screeching halt. She suffers a traumatic head injury. Her memory and intellect are intact. She can still talk and count. But she has lost all interest in and the ability to perceive information coming from the left side of space.
The left side of the world is gone. She has Unilateral Neglect.
She finds herself living in a bizarre hemi-existence, where she eats food only on the right side of her plate, reads only the right half of a page, and can easily forget that her left arm and hand even belong to her. Through rehabilitation, she struggles not only to recover the very idea of left, but also to recover her life, the one she had always meant to live.
While working with the Dementia Advocacy and Support Network, you spoke daily with people suffering from Alzheimer's. What was that experience like for you? What were the most common struggles that these people faced?
It's been an amazing experience. These people aren't there to be superficial or beat around the bush. They don't have the time to waste. We support each other and talk about the stuff that matters, so our conversations are often filled with vulnerability and bravery, love and humor, frustration and excitement. And when you share yourself like that, it leads to deep and intimate friendship. I truly love and admire the friends I've made through this group. Many I still know only through email. I've come to meet some in person at Alzheimer's conferences, and it's a great experience. We're colleagues in our Advocacy pursuits.
People with Alzheimer's stand on ground that is constantly shifting beneath their feet. Familiar symptoms get worse (more frequent or intensified) or new symptoms emerge, so just when people think they've adapted to it all, made all the adjustments and accommodations needed, there's more work to do. This can be frustrating, exhausting, demoralizing. I see all that.
I think the most common struggle I see people face, though, is the alienation and loneliness. Because this disease takes people out of their formerly fast-paced, personally fulfilling careers; because everyone else stays busy in their busy lives and people with this disease have to slow down; and because of the enormous stigma placed on having Alzheimer's, people with early-stage Alzheimer's find themselves extremely alone. That's why these online groups are so invaluable. They bring these people from all parts of the country together to share their common experience and break the isolation.
Do you believe we need to be more educated on Alzheimer's?
I do, especially about early-onset and the early stages of Alzheimer's. There are over a half million people in the United States alone under the age of sixty-five diagnosed with dementia, and they're not included in what gets talked about when people talk about Alzheimer's. The general public knows what the eighty-five-year-old grandparent in end stages of the disease looks and sounds like, but they have little idea what the fifty-year-old parent with Alzheimer's looks and sounds like. It's high time this group had a face and a voice.
A greater awareness of the early symptoms and experiences matters because people need to recognize the symptoms so they can get diagnosed and on proper medication sooner. It matters because people with early-onset need resources (like access to support groups) that are now primarily given to caregivers. It matters because drug companies need to start to recognize this as a sizable group worthy of inclusion in their clinical trials. Right now, many people with early-onset Alzheimer's cannot enroll in clinical trials because they are too young. It matters because families deserve to plan properly for the future, both financially and emotionally. It matters because awareness will reduce the stigma placed on people still living their lives with this disease.
Which writers inspire you?
Oliver Sacks is my biggest inspiration. In fact, The Man Who Mistook His Wife for a Hat was really the spark that ignited my interest in neuroscience to begin with. There's this quote from him:
"In examining disease, we gain wisdom about anatomy and physiology and biology. In examining the person with disease, we gain wisdom about life." That's everything right there. That's what I hope to do with my writing, both fiction and nonfiction.
What are you currently reading?
Oddly enough, I'm reading A New Earth by Eckhart Tolle, but not because Oprah told me to. It was recommended to me last August by a friend of mine with Alzheimer's. I was interviewing him for my next book, and he was excitedly telling me about all the incredible new discoveries he'd made, from meditation to diet and exercise to self-awareness. He told me I absolutely had to read A New Earth and that it would change my life. He was right.
I'm also reading The Lace Reader by Brunonia Barry. Amazing!
Do you have any advice for aspiring writers?
I know so many aspiring writers who are sitting in a holding pattern, with a work completed, waiting to find a literary agent. They're stuck, unable to give themselves permission to write the next book because they're waiting to find out if their work is "good enough," waiting to find out if they're a "real writer." This state of waiting, of not writing and self-doubt, is the worst state any writer can be in. My advice is this: If you don't find a literary agent falling into your lap quickly enough, if you feel like your work is done and is ready to be shared with the world, self-publish. Give your work to the world. Let it go. And keep writing. Freedom! I was recently in my car listening to Diablo Cody, who wrote the screenplay for Juno, on NPR and when asked what advice she had for aspiring screen-writers, she said, "Self-publish." I yelled alone in my car, "Woohoo! See?! Diablo Cody agrees with me, and she's just been nominated for an Academy Award!"
Explain your writing schedule.
I have a newborn baby boy, so these days it's catch as you can. But for Still Alice, I wrote in Starbucks every day while my then six-year-old daughter was in school. I found writing from home too difficult. There were too many distractions--phone calls to return, food to eat in the fridge, laundry to do, bills to pay. You know you're procrastinating when you're paying bills instead of writing the next scene! At Starbucks, there were no excuses. Nothing else to do but write. You can't even daydream there for long without looking crazy. So you just put your head down and do it. And I found I always had to stop short to go pick up my daughter from school. I'd be right in the middle of a great scene, right in the zone, and it would be time to get my daughter. And that would be it for the day. I wouldn't get back to it until the next morning. I stuck to that. My time to write was my time to write, and my time with my daughter belonged to us. I think having a limited number of hours each day to write kept me hungry to get back to it. I never dreaded it or experienced writer's block. Every day, I couldn't wait to get back to Starbucks, drink chai tea lattes, and write.
What advancements do you see being made in the fight against Alzheimer's?
Awareness leading to earlier diagnosis is important. Although the current drugs available for treating Alzheimer's do not change the ultimate course of this disease, they can stave off its progression for a significant amount of time, allowing the person with Alzheimer's to live on a sort of plateau, to enjoy the capabilities they still have for a longer time. And the sooner someone is diagnosed and put on medication that keeps them on that plateau, the more likely they'll be able to reap the benefits of a better treatment when one becomes available.
The other advancement I see is that the next generation of drugs for Alzheimer's will be disease altering--they will stop the progression of the disease. It used to be the standard thought that amyloid plaques and/or neurofibrillary tangles got deposited in the brain, and these things "gunked" up the neurons and caused them to die. And this neuronal death caused Alzheimer's.
Here's the new thinking.
The cognitive deficits--the symptoms of dementia--occur before the plaques form, before the neurons die. In the brain of someone with Alzheimer's, there is too much of a soluble protein called amyloid-beta 42. Either too much is made or not enough is cleared away. When too much is present, these individual little peptides stick together and form small oligomers. These gluey oligomers of amyloid-beta 42 lodge in synapses--the spaces between neurons--and interfere with synaptic transmission, the ability of neuron number one to "talk" to neuron number two. And when this happens, new information isn't learned. Or old information can't be accessed. Synaptic plasticity suffers. Over time, because this synapse isn't working properly and because of inflammation and other problems, that nerve axon terminal will retract. Eventually, unable to function, the neuron will die, leaving behind empty space (the atrophy seen on an MRI) and possibly a heap of amyloid-beta 42 in an amyloid plaque.
So it all starts as an attack on the synapses. The degree of dementia correlates only with synapse dysfunction, not with neuronal loss, not with number of plaques, not with atrophy on an MRI.
The cure for dementia, then, the kind of treatments that will be disease altering, will
impede production of amyloid-beta 42,
increase clearance of already produced amyloid-beta 42,
prevent amyloid-beta 42 from sticking to itself so it can't form oligomers, or
rip these already formed oligomers apart.
The beauty and the hope in all of these treatments is that people suffering from symptoms of dementia can be treated before they've experienced any neuron death. If the synapses are fixed, neurotransmission can work again. Function can be restored!
In choosing to tell a story about a woman with Alzheimer's disease, why did you make Alice a fifty-year-old Harvard professor rather than an eighty-year-old retired grandmother?
Well, one is that the fifty-year-old will notice and be alarmed by this disease in its earliest moments. Because we as a culture expect eighty-five-year-olds to be forgetful, because retired grandparents are no longer accountable to corporate bosses, because they don't have to produce a certain number and quality of widgets each day, because they might be widowed and living alone with no one to regularly witness the full extent of what is happening, because it is far easier to deny what is happening well after we suspect it or even trip over it, we don't usually see Alzheimer's in its beginning. In someone who is fifty, who is at the peak of her career, whose status in life and identity depends on a highly functioning brain, you'll see the beginning. And when the rug is pulled out, it's a long and terrifying fall.
There is a line in the book where Alice's doctor tells her, "...you may not be the most reliable source of what's been going on." Yet you chose to tell the story from Alice's point of view. Doesn't that get difficult to do as Alice's disease worsens and her perceptions indeed get less reliable?
It sure does, but I thought it was the most powerful choice. In telling the story through Alice's lens, I sit the reader right up against her Alzheimer's. It should feel uncomfortably close at times. You should feel her confusions and frustrations and terror right along with her. And yes, this choice forces us to lose what's going on inside the thoughts of her husband and the other characters, but we get an insider's perspective into the mind of someone slipping further and further into Alzheimer's. Most people without Alzheimer's never get to sit in that seat.
What is your favorite scene in the book?
There are probably two. One is a small scene with Alice and her three children. The kids are all arguing over whether their mother should be trying to remember something or not. Alice asks what time they'll be going to a play the next day. Her son tells her not to worry about it, she doesn't need to try to remember something she doesn't have to because they're not going to go without her. Her oldest daughter thinks she should be exercising her memory whenever possible, the sort of "use it or lose it" philosophy. The youngest thinks they should just let their mom know the information, and she can do with it what she wants. This is pretty common in families where someone has Alzheimer's. There's disagreement and people dig in their heels and take things personally. It's rife with conflict. In this scene, they argue and hurt one another's feelings and never agree, all in front of Alice. People talk about people with Alzheimer's all the time right in front of them, as if they're not there.
The other is the first paragraph. I just love everything about it. It still gives me the chills, and I've probably read it a hundred times.
What has the response been to Still Alice from the Alzheimer's community? How about from the non-Alzheimer's community, from people who have no connection to this disease?
Overwhelmingly positive. I can't tell you how much this means to me. For someone with Alzheimer's, or a caregiver of a loved one with this, to tell me that I got it right, that it's uncanny how true it all was, that they saw themselves all over the book, well, that's the highest compliment I can get. That I told the truth about this disease. This really became an important goal of mine while I was doing the research for the book and I came to know more and more people living with Alzheimer's. And it became a careful line to walk, to not overdramatize or romanticize this disease, yet not minimize it either.
And the National Alzheimer's Association has endorsed it. Of all the books out there on the topic of Alzheimer's, mine is the only one, to my knowledge, to have this stamp from them.
There are people who've read the book who have no personal connection to Alzheimer's and who've given me feedback. It's a moving story, and I think it works because it's about so much more than Alzheimer's. It doesn't lecture or preach or get too clinical. It's about identity and living a life that matters and about what a crisis does to relationships. And it's been incredibly rewarding to know that the book has given these readers a new awareness and sensitivity to the realities of living with Alzheimer's.
Table of Contents
Even then, more than a year earlier, there were neurons in her head, not far from her ears, that
SEPTEMBER 2003 Alice sat at her desk in their bedroom distracted by the sounds of John raci
OCTOBER 2003 That was a lot to digest," said Alice, opening the door to her office. "Yah,
NOVEMBER 2003 Dr. Tamara Moyer's office was located on the third floor of a five-story prof
DECEMBER 2003 On the night of Eric Wellman's holiday party, the sky felt low and thick, lik
JANUARY 2004 She had good reasons to cancel her appointments on the morning of January nine
FEBRUARY 2004 Friday: Take your morning medications Department meeting, 9:00, room 545 R
MARCH 2004 Alice popped open the Monday lid of her plastic days-of-the-week pill dispenser
APRIL 2004 As smart as they were, they couldn't cobble together a definitive, long-term pla
MAY 2004 Alice first thought of peeking inside the week after she was diagnosed, but she di
JUNE 2004 An unmistakably elderly woman with hot pink nails and lips tickled a little girl,
JULY 2004 John? John? Are you home?" She was sure that he wasn't, but being sure of anythi
AUGUST 2004 Her mother and sister had died when she was a freshman in college. No pictures
The well-being of a neuron depends on its ability to communicate with other neurons. Stud
SEPTEMBER 2004 Although it was officially the beginning of fall semester at Harvard, the we
OCTOBER 2004 She sat up in bed and wondered what to do. It was dark, still middle of the ni
NOVEMBER 2004 The movies that John had bought over the summer now fell into the same unfort
DECEMBER 2004 Dan's thesis numbered 142 pages, not including references. Alice hadn't read
JANUARY 2005 Mom, wake up. How long has she been asleep?" "About eighteen hours now." "Ha
FEBRUARY 2005 She slumped into the chair next to John, across from Dr. Davis, emotionally w
MARCH 2005 Alice stood at the podium with her typed speech in her hand and looked out at th
APRIL 2005 The energy required to write her speech, to deliver it well, and to shake hands
MAY 2005 They reached the counter after waiting a long time in a long line. "All right, Al
JUNE 2005 Alice sat at her computer waiting for the screen to come to life. Cathy had just
SUMMER 2005 Alice sat in a big, comfortable, white chair and puzzled over the clock on the
SEPTEMBER 2005 John sat at the end of a long table and took a large sip from his black coff
EPILOGUE Alice sat on a bench with the woman and watched the children walking by them. Not
POSTSCRIPT The clinical trial drug Amylix, described in this book, is fictional. It is, how
Table of Contents
Even then, more than a year earlier, there were neurons in her head, not far from her ears, that
SEPTEMBER 2003 Alice sat at her desk in their bedroom distracted by the sounds of John raci
OCTOBER 2003 That was a lot to digest," said Alice, opening the door to her office. "Yah,
NOVEMBER 2003 Dr. Tamara Moyer's office was located on the third floor of a five-story prof
DECEMBER 2003 On the night of Eric Wellman's holiday party, the sky felt low and thick, lik
JANUARY 2004 She had good reasons to cancel her appointments on the morning of January nine
FEBRUARY 2004 Friday: Take your morning medications Department meeting, 9:00, room 545 R
MARCH 2004 Alice popped open the Monday lid of her plastic days-of-the-week pill dispenser
APRIL 2004 As smart as they were, they couldn't cobble together a definitive, long-term pla
MAY 2004 Alice first thought of peeking inside the week after she was diagnosed, but she di
JUNE 2004 An unmistakably elderly woman with hot pink nails and lips tickled a little girl,
JULY 2004 John? John? Are you home?" She was sure that he wasn't, but being sure of anythi
AUGUST 2004 Her mother and sister had died when she was a freshman in college. No pictures
The well-being of a neuron depends on its ability to communicate with other neurons. Stud
SEPTEMBER 2004 Although it was officially the beginning of fall semester at Harvard, the we
OCTOBER 2004 She sat up in bed and wondered what to do. It was dark, still middle of the ni
NOVEMBER 2004 The movies that John had bought over the summer now fell into the same unfort
DECEMBER 2004 Dan's thesis numbered 142 pages, not including references. Alice hadn't read
JANUARY 2005 Mom, wake up. How long has she been asleep?" "About eighteen hours now." "Ha
FEBRUARY 2005 She slumped into the chair next to John, across from Dr. Davis, emotionally w
MARCH 2005 Alice stood at the podium with her typed speech in her hand and looked out at th
APRIL 2005 The energy required to write her speech, to deliver it well, and to shake hands
MAY 2005 They reached the counter after waiting a long time in a long line. "All right, Al
JUNE 2005 Alice sat at her computer waiting for the screen to come to life. Cathy had just
SUMMER 2005 Alice sat in a big, comfortable, white chair and puzzled over the clock on the
SEPTEMBER 2005 John sat at the end of a long table and took a large sip from his black coff
EPILOGUE Alice sat on a bench with the woman and watched the children walking by them. Not
POSTSCRIPT The clinical trial drug Amylix, described in this book, is fictional. It is, how