“Alive and Alert”: Lisa Genova on Writing, Research, and Alzheimer’s

by: Bruno Gegenhuber, Claire Pillsbury, and Sally Wies      


It’s hard to imagine author Lisa Genova sitting behind a sticky, laminate table in a grocery store Starbucks, scribbling down the next smash-hit New York Times bestseller. Yet for a year and a half, Genova did just that. She spent four hours every morning writing Still Alice – winner of the 2008 Bronte Prize and the 2011 Bexley Book of the Year. A novel that currently has 2.1 million copies in print, has been translated into 31 languages, and is now a major motion picture starring Julianne Moore. Believing this atmosphere devoid of distractions, Genova put pen to paper and created her absorbing tale of Harvard cognitive psychology professor, Alice Howland, navigating through life after being diagnosed with early-onset Alzheimer’s disease.

The question arises: How does one find inspiration for a novel written in a grocery store?

“The universe supplies what you need,” says Genova, a firm believer in extracting meaning from all corners of life. For Still Alice, she drew inspiration from her involvement in improvisational acting. “People don’t know how to be emotionally honest anymore,” she explains. When we act, we are forced to think on the spot, forced to remove the barriers and allow honest emotion to emerge – the kind of honesty needed for tackling such sensitive topics as Alzheimer’s. Acting develops reactivity, spontaneity, and flow of thought, skills which Genova states are indispensable for any aspiring writer.

The spontaneity fosters a determination to not get “precious” about our writing. It shifts the focus onto the completion of a draft and away from the constant fear and paranoia of mediocrity that all writers experience. Genova advises writers to just put the pen down and not lift it up until the draft is finished. Often, she herself does not even approach writing with any set plan. In fact, most of the time she does not know where the story is coming from or in which direction it will go, allowing the words to take on a life of their own.

But the trick to Genova’s success in writing encompasses far more than just her ventures into acting.

“Any art form is cross-training,” she says. It’s about “keeping your senses alive and alert” to many different streams of inspiration. In preparing for writing Still Alice, Genova found motivation in everything, from the physician’s guide to ALS to spiritual texts, from ballet to statements from Alzheimer’s patients in an online support group. This openness to the surrounding world increases your creative capacity as a writer, she states. It heightens your awareness of different perspectives and allows for more honest reflections on the state of the world.

Since the publication of Still Alice in 2007, Genova has written three more novels. Her most recent work released this spring from Simon & Schuster, Inside the O’Briens, tells the story of a 44 year-old police officer suffering from Huntington’s disease. While Genova has surely become a strong contributor to modern literature, it was not always this way. The author started out in the field of biology, receiving a PhD in neuroscience from Harvard University in 1998. She was set on a career in research until reflecting on her life and relationship with her grandmother, who also suffered from Alzheimer’s disease.

Two years after receiving the terminal degree in her field, Genova asked herself the question: “If I could do anything I wanted, and didn’t care what people thought, what would I do?” In that moment, she realized she wanted to write the novel that had been brewing within her since her grandmother’s diagnosis with the neurodegenerative disease. She wanted to bring a voice to someone who was slowly losing their ability to convey thoughts and feelings. Genova wanted to show the world something it had never seen before: the incredible strength and persistence of those struggling to survive a slipping grasp on reality. The millions of warriors, fighting for a solid foothold in society without a voice.

Several years would pass before Genova was able begin writing the story inside her. She wanted to show these people on the page as accurately as possible. Due to the connections formed in her previous career, her Harvard background and experience in the neuroscience field, she started the writing process with a major advantage in terms of research, yet she needed more. She needed personal insight into the disease. To achieve this, Genova communicated with numerous people from the medical community, patients and doctors alike. Some of her more unique experiences included having phone calls and private conferences with neurologists at notable hospitals, learning the details of the neuropsychological tests involved in diagnosis, and even role playing as an Alzheimer’s patient during a typical medical examination with experienced doctors. From this, she was able to gather information of incredible depth and intimacy, both on the textbook, medical level and the personal, experiential level.

She was especially interested in the latter: what does living with Alzheimer’s feel like? Genova made contact with an online support group for people who had dementia or related neurodegenerative diseases such as Alzheimer’s. She explained her desire to give them faces and voices the public could see and hear, and the group agreed to help her gain insight into the nature of living with the disease. By the time Genova had concluded her research and begun writing the novel, she was in correspondence with over 27 people in the early to middle stages of Alzheimer’s.

She was also more inspired than ever. The stories Genova received from the people she spoke to were awe-inspiring. They were fighters. The fact that they were so willing to share their experiences, despite their unfortunate circumstances, was something that amazed her. “They are choosing to live heroically with their Alzheimer’s,” she states. She felt an intimate connection grow between them – a connection she wished she would have had with her grandmother.

While Genova was distraught about her grandmother’s condition, she felt distanced from her and recognized this as a very real representation of our society’s treatment of people suffering from mental conditions. We tend to feel uncomfortable around these people as they are a direct reminder of our own vulnerability and mortality. Patients suffering from Alzheimer’s or other similar conditions can seem beyond our comprehension, and it is only human to avoid what we do not understand.

The distance she felt from her grandmother motivated Genova to tell this novel from Alice’s point of view.  In doing so, readers across the world have come to more fully understand and accept Alzheimer’s patients and to realize that while those who suffer from the disease may lose memory and knowledge, they do not lose themselves. They remain “alive and alert.”

Until we understand Alzheimer’s, we can never accept and sympathize with those who suffer from it. Best-selling author Lisa Genova has taken a great leap forward in increasing awareness by giving a voice to those considered voiceless and showing us the true nature of a heartbreaking disease.