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 Alic
e 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 cafés. 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 comf
ortable 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.