“They talked about her as if she weren’t sitting in the wing chair, a few feet away. They talked about her, in front of her, as if she was deaf. They talked about her, without including her …”
There have been many non-fiction books and articles written on the impact of Alzheimer’s disease. But sometimes it takes a work of fiction to really connect. Still Alice, by Lisa Genova, published in 2007, is such a book. It captures the slow disintegration and dismantling of memory experienced by Alice Howland, a professor of psychology at Harvard University, diagnosed in her early fifties with early onset Alzheimer’s disease.
At first, Alice’s memory lapses are not uncommon among older people: a struggle to remember names or where keys have been left. But she begins to realize something else – something bigger, frightening – is happening when she becomes disorientated when out jogging. For a terrifying few moments she has no idea where she is; the familiar terrain becomes an alien landscape.
Her memory lapses worsen. She forgets she should have gone to a conference; forgets that she needs to deliver a lecture – and sits bewildered among her students in the lecture theatre waiting for an imagined ‘guest speaker’ to arrive.
The diagnosis of Alzheimer’s disease, when it finally comes, is a profound shock – resisted, fought against, denied by her – but the slow, insidious chip, chip, chip away of memory moves Alice inevitably towards dependency on others.
On route, Alice fights hard against the disintegration of self, triumphant in perceived small victories over the disease. She holds her own in a faculty discussion about a student’s research, even makes an important contribution to the discussion on methodology and is congratulated for this. But then, a few minutes later, she repeats the same point, to the embarrassment of her colleagues. This scene highlights the stigma of the disease and how sufferers can be avoided by others. As a professor of psychology, she understands the reaction, but the knowledge does not make it any easier:
‘Those with cancer could expect to be supported by their community. Alice expected to be outcast. Even the well-intentioned and educated tended to keep a fearful distance from the mentally ill. She didn’t want to become someone people avoided and feared’.
The novel, written from Alice’s perspective, is memorable in the way it depicts the reactions of family members. Alice’s husband, John, seeks desperately for the latest Alzheimer research information and drugs to slow the process. At the same time, he struggles with his emotions, by turns angry, impatient, taking refuge in his work. But his reaction is underlined by his love for his wife. Alice says to him:
“I miss myself.”
“I miss you, too Ali, so much.”
“I never planned to get like this.”
Alice’s relationships with her children change. She becomes less controlling, particularly with Lydia, her daughter, who rejected, against Alice’s wishes, an academic career for acting. Gradually their relationship becomes more equal, as Alice listens more and admonishes less. And Lydia becomes Alice’s protector – presenting her point of view to other family members, helping Alice to remember, drawing out her instincts. In a touching final scene in the book, Lydia rehearses a scene in front of her mother. Unsure whether she has communicated the essence of the presented character, she asks Alice:
“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.”
This scene captures the main theme in the book: what makes us a person. When memory is stripped away, are we still Joe or Clare or Alice?
The answer is yes. The memory recedes, but the impact of a life remains. This may be for ill. But a person, like Alice, who can show genuine care for those around them, leave in their wake a significant legacy: the indelible patina of love on the lives of others.