I recently finished reading Lisa Genova’s New York Times bestselling novel, Still Alice. I was determined to purchase and finish the book before the movie on which it is based premieres next week. For anyone who reads Still Alice and travels this road personally, the story hits close to home. Get your tissues ready. I think this might be the first time I’ve cried over a fictional story in a book. Next week, I will be volunteering with the Alzheimer’s Association for a private screening of the movie. I will probably need an industrial sized box of tissues to make it through. For anyone who doesn’t have personal experience with this disease, get your tissues ready as well and get ready to learn a lot. Either way, the book is a real tearjerker.
The story in brief: The main character, Alice, is a 50-year-old Harvard cognitive psychology professor and world-renowned linguistics expert at the peak of her career when she begins to suffer from memory loss and confusion. She originally blames her memory issues on menopause, stress, and being overworked. But after getting lost just a couple of blocks from her house and totally forgetting a business trip, she decides that it’s time to see a doctor. She is eventually diagnosed with early-onset Alzheimer’s disease and her life is changed forever.
The story moves really fast. Her disease progresses quickly over the two-year span of the book. I know that every patient is different, but traveling this road with two different patients over the last two years and having heard stories from countless others about how their loved ones battled this disease for 5, 10, 15+ years, Alice’s progression seemed really fast to me. (I know. She’s a fictional character. Just an observation.)
She is married to another Harvard professor, John, and together they have three adult children. As they slowly accept Alice’s disease, the family roles change and their relationships strengthen.
The author holds a Ph.D. in neuroscience from Harvard and has gone through great lengths to include accurate technical terms throughout the story. From early symptoms to diagnosis and specific tests Alice takes, to the medications mentioned, I recognized most every term she used. One thing I didn’t really care for was that Genova tries to cram every Alzheimer’s symptom/behavior into this one patient. For someone like me, who doesn’t know everything, but is pretty well read on the topic, with each new issue she experienced, I found myself saying, “Well damn, that too?”
I will say that reading this story really shined a bright light on one thing for me. At one point in the book, in describing why Alice’s colleagues have started to avoid her she says, “Facing her meant facing her mental frailty and the unavoidable thought that, in the blink of an eye, it could happen to them.” This statement sparked an epiphany for me. This is why certain family members disappear. Fear. This is why they don’t call. They are scared to see what could very possibly one day be a reflection of them. I’ll be honest. I think that’s a cop out. I live and love with that same fear everyday. But I push through it and know that I can’t let fear win or we are all screwed. No, really. But it is what it is. I get it. We all handle challenges differently.
The most moving part of the story comes towards the end when Alice gives a speech at the Dementia Care Conference. I was literally moved to tears. “I am a wife, mother and friend. Worthy of love and and joy in these relationships.” She deserved a church shout for that line. People are often quick to dismiss people with this disease, especially the elderly. I firmly believe that our loved ones still feel joy. They still feel love. Alzheimer’s strips you to your core. And while your logic and reasoning may no longer be there, your emotions still are. I see it everyday in caring for my grandmother. When she still laughs at things she finds funny, and when she thanks me for helping her and when she is sad or offended by the tone of someone’s voice. The feelings are still there. As caregivers and loved ones we have to remember that.
I read on a message board recently that because the story focuses on the lives of an upper middle class family, anyone not truly familiar with the disease does not get to see the raw devastation it can cause. To a certain extent, they are right. Still Alice doesn’t show the story of the lower to middle class family, who has to drain their life savings to qualify for financial and medical assistance. Or the wife who is struggling to take care of her once kind and gentle husband who has turned abusive, and she has no one to turn to for help. Or the family who ultimately has to place their loved one in a facility because they have become a danger to themselves and others.
However, it does tell a story. A story that many would never know exists. In a way the book gives a voice to an often unknown group of Alzheimer’s patients, those with early onset Alzheimer’s. According to the Alzheimer’s Association, over 200,000 Americans under the age of 65 suffer from Alzheimer’s. Most people don’t think of the 29 year old woman, or the 50 year old man when they see the face of this disease. So to that point, it creates a certain level of awareness and I’ll take it.
I have mixed feelings on the long-term effects of stories like these. Will it bring us closer to a cure? Will it bring help to caregivers? Probably not. Until you have up close and personal experience with a disease like this it typically remains a distant possibility for which you would rather turn away and think of as just another tragic part of (someone else’s) life. But I certainly don’t think it hurts the cause.
Have you read Still Alice? What did you think?