Still Alice (26 page)

T
he 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.

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 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 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.