March 22, 2009
Still Alice by Lisa Genova
2009 Pocket Books
Finished on 3/16/09
Rating: 5/5 (Outstanding!)
An extraordinary debut novel about an accomplished woman who slowly loses her thoughts and memories to a harrowing disease—only to discover that each day brings a new way of living and loving.
Alice Howland is proud of the life she worked so hard to build. At fifty years old, she's a cognitive psychology professor at Harvard and a world-renowned expert in linguistics with a successful husband and three grown children. When she becomes increasingly disoriented and forgetful, a tragic diagnosis changes her life—and her relationship with her family and the world—forever.
At once beautiful and terrifying, Still Alice is a moving and vivid depiction of life with early-onset Alzheimer's disease that is as compelling as A Beautiful Mind and as unforgettable as Ordinary People.
I come from a long line of incredibly good genes. My maternal grandmother was 88 years old when she died, and up until her last few months, she was one of the most active and vivacious people I've ever known. She walked every day, entertained friends and family, was an avid gardener, a voracious reader, and even went white-water rafting with my godmother (they were both in their eighties!). Her mother was just as spry, living a long and healthy life of 96 years. My mother (who turns 76 in May) is following in their footsteps. She has inherited their joie de vivre, cooking and entertaining visitors and neighbors, volunteering at her local library (she's also a voracious reader), and traveling hither and yon with my stepfather. I hope to be at least half as active when I'm in my 70's!
The paternal side of my family could have been cut from the same cloth. My grandfather led a busy and active life (also one to walk every day) until succumbing to prostate cancer at the age of 92. My father turned 76 in January, and up until a year ago February, he and my stepmother had lived aboard their 1957 Richardson motor yacht for 15 years! As some of you may know, living aboard a boat is both physically and mentally demanding, but my father is more than up to the task.
My husband likes to joke about marrying a woman of "good stock." And yet, he's right. Lucky or blessed, I'm very fortunate to have been born into a family of such good genes and longevity. None of my grandparents or parents have any history of Alzheimer's. So I shouldn't worry, right? After reading Lisa Genova's incredibly powerful novel, I can't help it. I'm terrified! Still Alice puts a frightening face on this fatal disease. As Alice claims:
She wished she had cancer instead. She'd trade Alzheimer's for cancer in a heartbeat. She felt ashamed for wishing this and it was certainly a pointless bargaining, but she permitted the fantasy anyway. With cancer, she'd have something that she could fight. There was surgery, radiation, and chemotherapy. There was the chance that she could win. Her family and the community at Harvard would rally behind her battle and consider it noble. And even if defeated in the end, she'd be able to look them knowingly in the eye and say good-bye before she left.
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 to the face of a blazing fire. John continued to probe into the drugs in clinical development, but she doubted that any of them were ready and capable of making a significant difference for her, else he would already have been on the phone with Dr. Davis, insisting on a way to get her on them. Right now, everyone with Alzheimer's faced the same outcome, whether they were eighty-two or fifty, resident of the Mount Auburn Manor or a full professor of psychology at Harvard University. The blazing fire consumed all. No one got out alive.
And while a bald head and a looped ribbon were seen as badges of courage and hope, her reluctant vocabulary and vanishing memories advertised mental instability and impending insanity. 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.
Alice is a professor of psychology at Harvard University. Her expertise lies in psycholinguistics. She is one of the ten percent of those afflicted with Alzheimer's who are under the age of sixty-five. Alice is fifty years old and she has early-onset Alzheimer's.
On the annoying frustration of early symptoms:
"Come on," she urged, wishing she could attach a couple of jumper cables to her head and give herself a good, strong zap.
She didn't have time for Alzheimer's today. She had emails to return, a grant proposal to write, a class to teach, and a seminar to attend. And at the end of the day, a run. Maybe a run would give her some clarity.
Cued by the hanging rise in her inflection and the silence that followed, Alice knew it was her turn to speak but was still catching up to all that Lydia had just said. Without the aid of the visual cues of the person she talked to, conversations on the phone often baffled her. Words sometimes ran together, abrupt changes in topic were difficult for her to anticipate and follow, and her comprehension suffered. Although writing presented its own set of problems, she could keep them hidden from discovery because she wasn't restricted to real-time responding.
On the future:
Although Alzheimer's tended to progress more quickly in the early-onset versus late-onset form, people with early-onset usually lived with the disease for many years longer, this disease of the mind residing in relatively young and healthy bodies. She could stick around all the way to the brutal end. She'd be unable to feed herself, unable to talk, unable to recognize John and her children. She'd be curled up in the fetal position, and because she'd forget how to swallow, she'd develop pneumonia. And John, Anna, Tom, and Lydia would agree not to treat it with a simple course of antibiotics, riddled with guilt over feeling grateful that something had finally come along that would kill her body.
We all forget names. We find ourselves at a loss for a particular word. We recognize an acquaintance and yet can't for the life of us remember his name (or, for that matter, how we know him). And yet, we don't get lost in our own neighborhood. Or walk into a neighbor's kitchen, mistaking it for our own as we search the cupboards for coffee filters. Or forgot how to put on our underwear. Lisa Genova has written an incredible book that paints a vivid portrait of this progressively fatal disease. Still Alice is not an easy read, and yet I couldn't put it down. I read it in less than two days and I can't stop thinking about it. I've gone on to peruse the Alzheimer's Association's website and discovered the following information:
Today we know that Alzheimer’s:
Is a progressive and fatal brain disease. As many as 5 million Americans are living with Alzheimer’s disease. Alzheimer's destroys brain cells, causing problems with memory, thinking and behavior severe enough to affect work, lifelong hobbies or social life. Alzheimer’s gets worse over time, and it is fatal. Today it is the sixth-leading cause of death in the United States.Is the most common form of dementia, a general term for the loss of memory and other intellectual abilities serious enough to interfere with daily life. Vascular dementia, another common type of dementia, is caused by reduced blood flow to parts of the brain. In mixed dementia, Alzheimer’s and vascular dementia occur together.Has no current cure. But treatments for symptoms, combined with the right services and support, can make life better for the millions of Americans living with Alzheimer’s. We’ve learned most of what we know about Alzheimer’s in the last 15 years. There is an accelerating worldwide effort under way to find better ways to treat the disease, delay its onset, or prevent it from developing.Early-stage is the early part of Alzheimer’s disease when problems with memory, thinking and concentration may begin to appear in a doctor’s interview or medical tests. Individuals in the early-stage typically need minimal assistance with simple daily routines. At the time of a diagnosis, an individual is not necessarily in the early stage of the disease; he or she may have progressed beyond the early stage.
The term younger-onset refers to Alzheimer's that occurs in a person under age 65. Younger-onset individuals may be employed or have children still living at home. Issues facing families include ensuring financial security, obtaining benefits and helping children cope with the disease. People who have younger-onset dementia may be in any stage of dementia – early, middle or late. Experts estimate that some 500,000 people in their 30s, 40s and 50s have Alzheimer's disease or a related dementia. • 10 million baby boomers will develop Alzheimer's in their lifetime.
• Every 71 seconds, someone develops Alzheimer’s.
At this time, there is no treatment to cure, delay or stop the progression of Alzheimer's disease. FDA-approved drugs temporarily slow worsening of symptoms for about 6 to 12 months, on average, for about half of the individuals who take them.
I can do everything right: eat nutritionally healthy meals, drink in moderation, exercise on a regular basis, stimulate my brain by reading and writing, stay socially active, and abstain from smoking -- and yet, I may still wake up one morning and brush my teeth with shaving cream. Or fill Annie's water bowl with orange juice. All in spite of those good genes I inherited.
I'm sure there are some who can't bring themselves to read this poignant story. It's heartbreakingly sad; oh, so real. And yet, I think it helps to serve those of us who may someday have to face the reality of a loved-one looking at us and asking our name. Or asking if we're married or have any children. And to smile back at that curious face and reply, "Yes, sweetie. I'm Lesley. I'm your wife and we have two daughters." I would want to understand the reason for that absent look in his eyes or why he doesn't know who I am or why he can no longer read his books. I don't want to get angry and frustrated. I would hope to be patient and loving. As I would hope he would be with me, if it were me not recognizing him.
Still Alice is more than just a story about a wife and mother. It's an important lesson in compassion and in understanding a fatally progressive disease. I can't recommend it highly enough. This is for anyone who has a grandparent, parent, sibling, spouse or child.
Thank you, Lisa, for your amazing debut novel. You have given the Alzheimer's community a gift of love and awareness.
Go here and here to listen to Lisa speak about her book.
Tune in to HBO's Alzheimer's Project, beginning on May 10th. This four-part documentary is helping to change the way America views Alzheimer's.
Click here for Lisa's website.