0 comments 21 January, 2015
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, overand 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.
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 screenwriters, 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.