Still Alice by Lisa Genova

Alzheimer's disease was an entirely different kind of beast. There were no weapons that could slay it. Taking Aricept and Namenda felt like aiming a couple of leaky squirt guns in the face of a blazing fire....Right now, everyone with Alzheimer's faced the same outcome, whether they were eighty-two or fifty, resident of the Mount Auburn Manor or full professor of psychology at Harvard University. The blazing fire consumed all. No one got out alive.

Dr. Alice Howland is a thoroughly modern, middle-aged professional woman. A brilliant, psycholinguist, she is the William James Professor of Psychology at Harvard University where she studies the mechanism of languages.But something isn't just right.

For Alice it begins with forgotten words during lectures, a moment in Harvard Square where she has no idea where she is nor how to get home, a forgotten trip to the airport to catch a plane to a conference she'd spent the day preparing for, and names on to-do lists that mean nothing to her.

Suspecting that something is seriously wrong, and without the knowledge of her husband, John, Alice goes to see her doctor who refers her to a neurologist. After testing, Alice receives the stunning diagnosis of early-onset Alzheimer's. It is both numbing and terrifying for her. She is 50 years old.

Alice struggles to tell John, who is a cancer cell biologist, because telling him will make it all "real". When she does, his reaction is almost cerebral and clinical.At first reluctant to believe her, John offers Alice no comfort. Instead he tells her he needs to find out more about Alzheimer's.

They decide to have Alice undergo genetic testing, which if positive, would support the clinical diagnosis, but if negative, would not necessarily rule it out. When genetic testing confirms her diagnosis, Alice and John must now come to terms with her disease, what this will mean to them as a couple and individually, and the implications for their three adult children who are at risk. After John and Alice tell their children, two decide to undergo genetic testing.

As part of coming to terms with her illness, Alice must decide what it is that she wants most in the time remaining to her. Alice feels at this point, that her career at Harvard is far down the list and that she would also like to spend more time with her husband and family. She also feels that "...when the burden of her disease exceeded the pleasure of that ice cream, she wanted to die." And so Alice develops a plan to deal with that point in her life.

Told in Alice's voice, Still Alice follows one woman's journey into the world of progressive neurodegenerative disease that is Alzheimer's. It is a journey that at times evokes strong visceral reactions especially when we are shown how painful Alice's loss of memory is to her family. These moments are present enough that they give us a realistic view into the world of Alzheimer's. The heartache of seeing Alice, at times so blissfully unaware of her loss, is countered by the loving response of her family in these moments. But we also experience Alice's confusion and anger when her symptoms flare. Alzheimer's is a disease that won't wait.

The reader also learns a significant amount of information about Alzheimer's disease. Information is sprinkled throughout the book as Alice's family confronts her diagnosis and deals with the many issues that result from her disease - for example, medications and home care. There is much information on current treatments and drug regimens (current to 2008/2009 when the book was written and published). Some readers might find this tiresome,  but I believe that this contributes to the novel's overall success.

Since the two main characters, Alice and John are brilliant scientists and two of their  children are also in the field of medicine, the discussions are naturally cerebral and scientific. These characters allow the author the liberty of doing inserting a great deal of medical information. When Alice goes in for genetic testing we learn that there are three gene mutations that a person can be tested for - APP, PS1 and PS2. Without going into too much detail, the reader is given some essence of the ramifications of genetic testing for Alice and her husband, and their children. The reader is allowed to formulate their own ideas on the usefulness of genetic testing and what having those results might mean for family members.

I feel that one of the main themes the author, Lisa Genova has touched upon in Still Alice, is that of quality of life in terminally ill persons. Still Alice is a novel that presents the lives of those with Alzheimer's as being worthy and having meaning - even when their world narrows and especially when in the present they can't foresee such meaning in the future. In a culture in which preconceived notions of "quality of life" are benchmarks for assisted suicide and euthanasia, Still Alice offers the idea that we just can't know what life will be like and how we will feel until we get to that point. This is theme is explored in the novel through the actions of Alice both before her disease has progressed and when a crisis occurs.

*spoiler alert*


Not long after Alice has been diagnosed with Alzheimer's, she decides that when her disease develops to a certain point, she no longer wants to live. She programs into her Blackberry, five very basic questions which she will answer every morning. She decides that when she can no longer answer these questions she will follow the instructions in a file named "Butterfly" on her computer. The instructions are to take an overdose without telling anyone. So Alice has a preconceived notion of what her life will be like, of what her "quality of life" will be like at this point in time. It is something though that she really can't know until she arrives at that moment in her life.

Instead it is other circumstances that propel her to try to commit suicide. John is offered a job at the University of New York, which he decides to take, despite Alice's worsening health. This will mean moving Alice from everything that is familiar to a strange and new city. When his family challenges him on this, he refuses to back down. Alice realizes that she has made many sacrifices for John and she has made it easy for him to love her,  but when it is time for his love to become sacrificial he is not interested. She decides she must make the "sacrifice". Fortunately, she does not succeed.

Instead, with the help of her daughters, Alice stands up to John, remains in Boston. her youngest daughter, Lydia stays with her. When John who must know about the "butterfly" file which was on her Blackberry and on her personal computer asks her if she still wants to be here she says yes. As Still Alice demonstrates, when Alice is long past her predetermined "criteria" for a happy and worthy life, she is still happy and feels intense love! She can still find things to live for - her daughters, her grandchildren.

She didn't need to go anywhere. She felt lucky  about this. She and the woman she sat with listened to the girl with very long hair play her music and sing. The girl had a lovely voice and big, happy teeth and a lot of skirt with flowers all over it that Alice admired.
Alice hummed along to the music. She liked the sound of her hum blended with the voice of the singing girl.

Genova's use of the butterfly motif both in the naming of the suicide file and in the image of the butterfly on the cover and the butterfly motif on each page of the book is significant to the story and the issue of quality of life. Alice wears a beautiful blue art nouveau butterfly necklace that her mother gave her. When Alice was a small child she cried over the fact that the butterfly, although very beautiful, had such a short lifespan. Her mother however, felt that a short life did not mean a tragic one. The life of the butterfly was still beautiful as it moves from flower to flower. In Alice's mind, she will be like the butterfly - she will have a short life but it will beautiful.

I have to say that I found at first that I liked neither Alice nor John. Alice was too cerebral for me and much too modern. She was a woman whose life work was her passion and who seemed d  and John never seemed to show Alice much comfort. However, as the novel moved forward, Alice's disease made them more human and more compassionate. Lisa Genova was adept at portraying the conflict John experienced when offered an exciting new position at a different university and his responsibilities to Alice as a caregiver and husband. But I felt that he largely abandoned his wife to the care of their daughter Lydia. It was Lydia, Alice and John's youngest child and the one who had a difficult relationship with her mother, who had great compassion and care for her mother. Alice's disease brought their relationship back on track.

Still Alice is fantastic book for book clubs, teens interested in reading adult books dealing with specific issues and for those interested in realistic fiction. There are so many issues, especially identity and loss, that can provide fodder for discussion and debate.  It was Lisa Genova's debut novel. I may partake of her second novel, Left Neglected, despite Publisher's Weekly's snarky review.

Book Details:
Still Alice by Lisa Genova
Toronto: Gallery Books 2011
327 pp.