36. Still Alice
by Lisa Genova
I'm quite sure it was Marcia who first brought this book to my attention. And then I read reviews from Les and Kay. I knew I wanted to read it but didn't pick it up until this summer.
Tom's father has Alzheimer's. For a while it was quite slow in manifesting itself, but lately the changes are coming quicker and stronger. The other day Tom was to bring his father for a haircut at 9 am. When Tom arrived to pick him up, he wasn't dressed. His landlord said that the previous evening he came down his outside stairs, all dressed and ready for his haircut. The solution that day was to make a later appointment, but we know that there are going to be events and situations for which there are no solutions.
At present he lives alone but in a house owned by a wonderful man who keeps track of him. He still recognizes everyone. He still goes down the hill to his part-time job as a proofreader at the weekly hometown newspaper. Don't ask. We can't imagine how he does it, but they may just keep him on because everyone there is so fond of him. Yet, this very job has created a couple disturbing Alzheimer's situations. One evening he went down at 8 o'clock, thinking it was the morning. Another time he called here just before midnight all upset because he had to get the paper ready for publication the next day. Tom talked him out of this, saying it wasn't his job; that someone else would be doing that work and he could go to sleep.
The difficulty dealing with a person who has mental issues, whether Alzheimer's or anything else, is when they look you in the eye and speak rationally. We all tend to take people at face value. If someone says they're out of orange juice, the listener assumes it is true. But we are fast learning it isn't necessarily true. Tom has jumped into the car to go buy medicine his father said he was out of, only to bring it to the apartment and see bottles of it sitting on the shelf. For a while we thought it would be good for Tom to call each morning just to check in, but even if he does so, whatever his father says at 9 am may be entirely different at 9.05. That's just how this disease works. There are no rules. There is no map. Every sufferer is both the same and different, one from another.
But there is a guidepost. Still Alice is a most helpful way to get inside the head of one with this disease. The reader meets Alice, a woman who has it all - a family and a very successful career as a Harvard professor. Both husband and wife are acclaimed in their fields and spend much time working. The children are grown and living their own lives. She begins to quietly, slowly feel a little odd. The book in fact begins with her husband John racing around looking for his keys, a typical situation in their household. It is a moment of levity; a moment of familiarity for the reader because this is something we all know. If not ourselves, then our partners or children cannot find things that are right in plain sight. The sense I got was that this is a problem John has, but not Alice, at least not until recently. She hasn't told John about the little episodes of forgetting she has experienced, like not being able to find the charger for her BlackBerry, and after a search bought a new one only to find the original plugged in next to her bed, 'where she should have known to look.' The book is fiction but reads as if it were really happening. Sometimes it felt like a thriller in the way it built up. What now? we wonder. After that beginning, the narrative slips into a regular tale of life with concerns about a daughter and annoyance that her husband is away so much. And isn't this like all mystery/thriller books? Normalcy with a little something strange, and then the strange begins ever so slowly to take over the normal. It is a very gripping story which I read at two sittings. The characters and the situations have stayed with me. When things come up with Tom's father, I am reminded of an event in the book. I've told Tom how very, very helpful Still Alice is in understanding how the disease can work. Sometimes Alice seems almost 'normal' and then does something so unexpected that I was stunned and shaken. Later in the book, as her Alzheimer's has gotten worse, but she is still functioning, she attends a seminar. After someone gives a presentation, Alice makes a comment which is received with respect until … she says the whole thing over again though in fewer words. What a mysterious disease that causes someone a few moments of brilliance which she can't recall saying but can repeat.
The confusing thing for those of us on the outside is that sometimes the person with Alzheimer's does indeed seem so normal. Tom will say something to his father and it seems as if he understands. And he well might for that instant, but then it is lost. This has been the hardest thing for Tom to grasp so far. Tom says he has to stop looking at his father's words in a 'logical' manner.
Still Alice is simply brilliant in the way it shows Alice's state of mind. A morning is described when she and her husband are going to go for a run. She felt the cool air and went inside for another layer of clothing. After searching through several drawers, she found a lightweight fleece and put it on. She noticed a book she'd been reading on her nightstand. She grabbed it and walked down the stairs and into the kitchen. She poured herself a glass of iced tea and walked out to the back porch. She settles down to read. Goes and gets a blanket. John finds her and asks, "What are you doing, aren't we going for a run?"
And there is a terrible incident when she can't find the bathroom in her own house.
Every character in this book is well-written, and real. Her husband does not come off as a knight in shining armor, but his actions do seem possible in light of who he is. And really, how do any of us know how we would react if the person we know so well is no longer that person. It's hard enough if the couple is in their 80s, but being thirty years younger creates particular strains on the relationship. We see the impatience of her children, and the great kindness of those same children. They react, when what they are reacting to can change in an instant. Alice remembers the word 'condiments' but can't name that
... tub of white butter. But it wasn't called white butter. What was it called? Not mayonnaise. No, it was too thick, like butter. What was its name?Some people say that they would rather have cancer because it may be able to be cured, while Alzheimer's at this point in time is unstoppable. Even Alice feels this way.
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 herself 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.I understand this view, but it is not my view. Probably it comes from watching two parents die of cancer. I would hate to know I had cancer. I would hate that 'good-bye.' Whereas, if I had Alzheimer's I wouldn't know, at least at some later stage. You know the Alzheimer's joke? The doctor says to the patient. 'I have two bits of news. You have cancer and you have Alzheimer's.' And the patient replies, 'well at least I don't have cancer.' This may seem irreverent and impossible, but it happened to Tom's father. He has had lymphoma for a couple years but it is very slow moving, and the doctor has said outright that this is not what will kill him. When Tom and his father were at a new doctor's office one day, there was a mention of chemotherapy. Tom told the doctor his father hadn't had chemo for his cancer. And Tom's father piped up, 'I have cancer?' So there you are. I would be happy with an illness that let me forget I had cancer. Yes, there are horrific things about it, but if I had my choice of the two that's what I would choose.
One day Tom had to interrupt class because he had to call his father. He asked this group of about 18 junior high kids if they knew anyone with Alzheimer's. Five hands went up, and they proceeded to tell Tom their own personal Alzheimer's stories. This disease is a plague, and is only going to get worse as we baby boomers get older and older. Doing crosswords, using stainless steel cooking pots, running every day - they aren't going to prevent it. The early onset seems to have a genetic component, but most people get it when they are older. The statistics from the Alzheimer's Association are chilling:
One in eight older Americans has Alzheimer’s disease.I am someone who believes in the gifts, even the strengths, that can accompany a dysfunction in the brain, and Still Alice illustrates my belief. Alice's daughter is an actress, and though Alice doesn't 'get' what is going on in a play, she does understand the essence, the truth of a character and what the actress is trying to portray in that character. In a very touching scene near the end, Alice doesn't remember her daughter Lydia's name or that this young woman is even her daughter but when Lydia asks
Alzheimer’s disease is the sixth-leading cause of death in the United States.
Over 15 million Americans provide unpaid care for a person with Alzheimer’s or other dementias.
Payments for care are estimated to be $200 billion in 2012.
"Hey, Mom, will you listen to me do this monologue I'm working on for class and tell me what you think it's about? Not the story, it's kind of long. You don't have to remember the words, just tell me what you think it's about emotionally. When I'm done, tell me how I made you feel, okay?"And Lisa Genova 'got it exactly right.' This is a perfect book. It is real but not completely discouraging. Facts are faced and not faced. People respond well and don't respond well. It is the truest fiction I've ever read. The author has given a great gift to the world.
Alice nodded, and the actress began. Alice watched and listened and focused beyond the words the actress spoke. She saw her eyes become desperate, searching, pleading for truth. She saw them land softly and gratefully on it. Her voice felt at first tentative and scared. Slowly, and without getting louder, it grew more confident and then joyful, playing sometimes like a song. Her eyebrows and shoulders and hands softened and opened, asking for acceptance and offering forgiveness. Her voice and body created an energy that filled Alice and moved her to tears. …
The actress stopped and came back into herself. She looked at Alice and waited.
"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."