Still Alice

"Picking up anything written by LISA GENOVA is quickly becoming a no-brainer."

—USA Today

STILL ALICE

Reads like a gripping memoir of a woman in her prime watching the life she once knew fade away.

—USA Today

Vivid, well-informed, and deeply sympathetic.

—San Francisco Chronicle

I couldn’t put it down.’

—The Boston Globe

Full of heartbreaking believability.

—The Globe and Mail

A masterpiece that will touch lives in ways none of us can even imagine. This book is the best portrayal of the Alzheimer’s journey that I have read.

—Mark Warner, Alzheimer’s Daily News

LEFT NEGLECTED

"Remember how you couldn’t put down Still Alice? Well, clear your schedule—because you’re going to feel the same way."

—Jodi Picoult, #1 New York Times bestselling author of Sing You Home

Genova is the master of getting into the heads of her characters, relating from the inside out what it’s like to suffer from a debilitating disease . . . brilliantly.

—USA Today

Engaging, sympathetic.

—San Francisco Chronicle

Equal parts Jennifer Weiner and Merck Manual, Bridget Jones meets Oliver Sacks.

—Montreal Gazette

LOVE ANTHONY

Lisa Genova’s novels ring true. . . . Try not to weep.

—USA Today

Compassionately yet honestly depicts the reality of being the parent of an autistic child. . . . Riveting, brilliantly written.

—Shelf Awareness

Readers will find comfort in the beauty of Genova’s prose and ability to create profound emotional moments.

—Winnipeg Free Press

INSIDE THE O’BRIENS

This is Genova’s genius. A bold, skillful writer at the height of her narrative powers, she makes us long to hope for the hopeless and comfort the condemned.

—Jacquelyn Mitchard, author of The Deep End of the Ocean

Brimming with candor, pathos, and deeply human characters.

—Vanessa Diffenbaugh, author of The Language of Flowers

[Genova’s] very human novel teaches us to keep living, to lean on each other, and be there to be leaned on.

—Matthew Thomas, author of We Are Not Ourselves

Genova . . . compassionately details how an illness—this time Huntington’s disease—can destroy not only the afflicted, but those who love them as well.

—People, a People pick

"Inside the O’Briens . . . promises to do for Huntington’s disease what Still Alice did for Alzheimer’s."

—The Huffington Post

EVERY NOTE PLAYED

Only Lisa Genova could bring such honesty and grace to the war against ALS. Searing writing and a must-read.

—Helen Simonson, New York Times bestselling author of Major Pettigrew’s Last Stand

Sometimes it’s easier to tell truth in fiction. . . . And she tells it with heart and hope.

–NPR

"Genova is far more serious and readable, concerned as much with depicting the clinical realities of ALS as in wringing it for emotional catharsis. You might drop a few tears reading Every Note Played but you won’t feel bullied into doing so."

—The Wall Street Journal

Genova captivates. Gut-wrenching but suspenseful reading. . . . Both substantively informative about ALS and an emotionally wrenching psychological portrait.

—Publishers Weekly

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Dearest Reader,

When I was twenty-eight years old, my grandmother was diagnosed with Alzheimer’s. As the neuroscientist in my family, I did everything I could to understand this beast of a disease. I learned the anatomy, the clinical presentation, and the molecular neurobiology. I read about disease management and caregiving. I learned a lot, but even armed with all of this education, I still didn’t know how to simply be with my grandmother. I could relate to her as a neuroscientist. I had no idea how to relate to her as her granddaughter. I felt sad, upset, scared, embarrassed, frustrated, uncomfortable, powerless, and disconnected. I felt bad for her and bad for us, her family.

But I didn’t know how to feel WITH her. This is the distinction between sympathy and empathy. Sympathy is feeling for someone and keeps us emotionally detached, our experiences separate. Empathy is feeling with someone. It’s the imaginative leap we make when we take on the perspective of another person, when I imagine what it feels like to be you.

I soon realized that everything I’d read about Alzheimer’s was written from the perspective of an outsider looking in—scientists, physicians, caregivers, social workers. My education lacked the point of view of the person with Alzheimer’s and an answer to this question: What does it feel like to have Alzheimer’s?

I remember my AHA moment, the idea that fiction would be the place to find the answer. Stories give us the chance to feel what someone else is feeling, to walk in someone else’s shoes, to see ourselves in the other.

Still Alice was my quest for empathy, for understanding what it feels like to have Alzheimer’s. In doing the research for this book, in addition to shadowing neurologists, interviewing general practice doctors and genetic counselors and scientists, I came to know the real experts in this disease—twenty-seven people living with younger onset and/or early stage Alzheimer’s, people who felt stigmatized and alienated, people who bravely and generously shared with me what it feels like to live with this disease.

In listening to them, I soon realized that this book was bigger than a personal quest. Much like the social reaction to cancer fifty years ago, the general public was too afraid of this monster of a disease to openly look at it or talk about it. And I thought, maybe this story I’m writing can give a human face and voice to this disease. Maybe it can give readers access to what might otherwise be too scary and overwhelming to consider. Maybe it can reveal the humanity behind this illness. In answering my question What does it feel like to have Alzheimer’s? through story, I might change the world’s perception of this disease.

My query letter seeking representation for Still Alice was rejected or ignored by 100 literary agents. The few who asked to read the manuscript ultimately felt that Alzheimer’s was too scary, heavy, and dark, and that readers would shy away from the subject. It was too big of a risk, and they passed on it. I pressed on and self-published Still Alice, selling copies from the trunk of my car for almost a year. Word of mouth eventually led me to an agent and Simon & Schuster.

Still Alice went on to spend 59 weeks on the New York Times bestseller list and has been translated into 37 languages. In considering the possibility of Still Alice being adapted for the screen, my film agent told me, You have a drama starring a fifty-year-old woman who has Alzheimer’s with no triumphant ending. Hollywood is never going to make that movie. Perseverance paid off again, and Julianne Moore won an Oscar for Best Actress in the film. Still Alice has also been adapted for the stage and just finished a tour of the UK.

So I want to thank you—the reader, the moviegoer, and the theater patron—for having the courage to read this book, to watch the film, and see the play. I hope this story has given you the chance to understand what it feels like to have Alzheimer’s, to walk in Alice’s shoes, to experience empathy. I hope this knowledge helps you stay connected to your loved ones with Alzheimer’s and be a better caregiver. And I hope it has given you the understanding, the language, and the familiarity to talk about this previously unspeakable subject.

Why is talking about Alzheimer’s important? Conversation fuels social change. Talking about Alzheimer’s is crucial for bringing your excluded, alienated neighbors with Alzheimer’s and their families back into community, for eradicating the stigma and shame people with Alzheimer’s have endured for too long, for creating the advocacy and urgency needed to fund the research that will lead to treatments and survivors.

Maria Shriver once said that she hopes Still Alice will do for Alzheimer’s what Philadelphia did for HIV and AIDS. I think we’re partway there, Maria. Someday, hopefully and optimistically soon, we’ll have a preventative medicine and a cure. And I’d like to think that this story—and everyone who has read or seen and talked about it—will have played a role in getting us there.

My grandmother died in 2002, two years before I began writing Still Alice. I wish I knew then what I understand now. I pass this baton to you.

With love,

Lisa Genova

January 5, 2019

Still Alice:

THE FIRST DECADE

JULY 2007

Still Alice was self-published through iUniverse. Copies could be purchased at amazon, bn.com, a handful of independent bookstores, and out of the trunk of my car.

MARCH 2008

I spoke about Still Alice, Alzheimer’s, and empathy at the first early stage summit at the Alzheimer’s Association Advocacy Forum in Washington, DC.

MAY 2008

Simon & Schuster acquired Still Alice. I stopped selling copies from the trunk of my car.

JULY 2008

The drug Flurizan failed to significantly improve cognition in patients with mild Alzheimer’s disease in its Phase 3 clinical trial. It was hoped that Flurizan would reduce levels of amyloid-β and thereby slow or stop disease progression. The fictional clinical trial drug Amylix in Still Alice was modeled after Flurizan.

2008

The Dominantly Inherited Alzheimer Network (DIAN) Observational Study was launched by Washington University School of Medicine in St. Louis. This study was designed to discover and track changes that occur in the brains of people with dominantly inherited Alzheimer’s disease, a rare form of Alzheimer’s caused by gene mutations in presenilin 1, presenilin 2, or amyloid precursor protein. This form of early-onset Alzheimer’s affects less than 1% of people with the disease and typically causes dementia symptoms to begin when people are young, in their 30s, 40s, and 50s. I gave Alice Howland in Still Alice the presenilin 1 mutation. The aim of DIAN is to find biomarkers that will lead to earlier diagnostics, treatments, and prevention for all forms of Alzheimer’s.

JANUARY 2009

The Simon & Schuster trade paperback original edition of Still Alice was published. It debuted at #5 on the New York Times list.

SEPTEMBER 2009

I spoke about Alzheimer’s and empathy in Copenhagen on World Alzheimer’s Day.

OCTOBER 2010

Maria Shriver and the nonprofit organization she founded, A Woman’s Nation, released The Shriver Report: A Woman’s Nation Takes on Alzheimer’s in partnership with the Alzheimer’s Association. This was the first public report showing that women are disproportionately impacted by Alzheimer’s.

JANUARY 2011

The National Alzheimer’s Project Act (NAPA), legislation developed by the Alzheimer’s Association with Congressional champions to address the Alzheimer’s crisis, was signed into law.

NOVEMBER 2011

James Brown and Lex Lutzus, two young and relatively unknown producers from London, optioned the film rights to Still Alice. Richard Glatzer and Wash Westmoreland signed on to write the script and direct the film.

MAY 2012

As required by NAPA, the Department of Health and Human Services (HHS) released the first National Plan to Address Alzheimer’s Disease, with the goal of preventing and effectively treating Alzheimer’s by 2025.

AUGUST 2012

Julianne Moore signed on to play Alice in the film adaption. (!!!)

SEPTEMBER 2012

Maria Shriver and Elizabeth Gelfand Stearns attached to the film as executive producers. Maria lost her father, Sargent Shriver (January 2011), and Elizabeth lost her mother, Judy (2004), to Alzheimer’s.

APRIL 2013

Still Alice was chosen as one of thirty titles for World Book Night.

MAY 2013

Still Alice the PLAY, adapted by Christine Mary Dunford, premiered at the Lookingglass Theatre in Chicago.

2014

The first Alzheimer’s prevention trial targeting amyloid, the A4 Study, began. It enrolled more than 1,100 clinically normal people aged 65–85 who have biomarker evidence of elevated amyloid plaque levels in their brains, which may be an indicator of future cognitive decline years before dementia symptoms appear. The study is testing the efficacy of the anti-amyloid anti body solanezumab in reducing amyloid levels and preserving cognitive function. Results won’t be ready until 2022.

MARCH 2014

Still Alice the MOVIE was shot over five weeks in New York City and Long Island. Diagnosed with ALS, unable to speak and partially paralyzed, Richard Glatzer codirected the film by typing with one finger on an iPad.

SEPTEMBER 2014

Still Alice the MOVIE premiered at the Toronto International Film Festival. Two days later, Sony Pictures Classics acquired North American distribution rights amid Oscar buzz.

DECEMBER 2014

Dr. Rudy Tanzi and Dr. Doo Yeon Kim developed Alzheimer’sin-a-Dish, a 3-D gel model of Alzheimer’s in a tissue culture dish. Amyloid plaques and tangles appear in this 3-D model in just six weeks, compared to the one year that it takes for plaques alone to form in a mouse model. Alzheimer’s-in-a-Dish may greatly accelerate screening for potential drug therapies.

JANUARY 2015

New York City held the US premiere of Still Alice the MOVIE. When asked by a journalist what attracted her to the role of Lydia, Kristen Stewart told him that if this movie was done well, she’d have the chance to be in a film that would say something important. I’ve loved Kristen’s open heart and old-soul wisdom since the day I met her, and this comment made me love her even more.

FEBRUARY 2015

Julianne Moore won Best Actress Oscar for Still Alice. I was there, in the audience—thrilled, grateful, and weeping.

MARCH 10, 2015

Richard Glatzer died of ALS.

SUMMER 2015

Maria Shriver refined the mission of A Woman’s Nation and launched the Women’s Alzheimer’s Movement (WAM). Two thirds of people with Alzheimer’s are women. Through education and funding gender-based Alzheimer’s research, WAM is determined to find out why this disease disproportionally affects women’s brains.

FEBRUARY 2016

I gave the closing address about Alzheimer’s and empathy at the Perth International Arts Festival.

MAY 2016

The Alzheimer’s Association Rita Hayworth Gala raised more than $1 million for Alzheimer’s research, care, and support programs and honored Still Alice for its contribution to Alzheimer’s awareness.

APRIL 2017

I gave a TED Talk on the main stage in Vancouver: What You Can Do to Prevent Alzheimer’s. As of January 2019, it has been viewed almost 4 million times.

OCTOBER 2017

Along with Ken Dychtwald of Age Wave and George Vradenburg of UsAgainstAlzheimer’s, I served as senior advisor on the XPRIZE Alzheimer’s team. We designed a competition that, beginning late 2019, will globally crowdsource the discovery of an early diagnostic for Alzheimer’s that informs intervention or prevention.

JANUARY 2018

Bill Gates announced that he’s donating $100 million to Alzheimer’s research. Half will go to the Dementia Discovery Fund, an organization focusing on innovative research. The other half will fund a national patient registry in an effort to speed up recruitment for clinical trials and an international shared database to facilitate research and collaboration. Bill’s father has Alzheimer’s.

SEPTEMBER 2018

Congress approved the largest increase in federal funding for Alzheimer’s research at the National Institutes of Health for the fourth year in a row, bringing annual federal Alzheimer’s research funding to $2.3 billion.

FALL 2018

Still Alice the PLAY toured the UK.

2018

Naklada Ljevak publishing house purchased the rights to translate Still Alice in Croatian. Still Alice has now been translated into 37 languages.

In Memory of Angie

For Alena

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