Still Alice Page 0,92

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