When I, and many Dutch viewers with me, was in shock watching the NTR documentary Levenseindekliniek*, I had coincidentally just finished reading the book Still Alice. A book about an intellectual 50 year old woman who is diagnosed with early onset Alzheimer’s disease. Seeing Mrs. Goudriaan, prisoner in her own body, but still enjoying the little things, I was worried about her genuine feelings. The feelings she could no longer put into words, that part of her mind which she lost control over.
Reality is that people suffering from Alzheimer’s in small steps basically become a different version of themselves. For instance they can suddenly develop a different taste in food or music and adopt new interests. At the same time they are losing more and more of their former me; their memories, natural and trained talents and their personalities. It does not mean though that this newborn personality instantly makes them unhappy. After a difficult first phase of frustration and the knowledge of loss, at a certain stage patients reach a plateau where they remember very little about the person they used to be. This small and simple world is now their new reality. For their loved ones this process is much harder to accept though because they miss the former person and often refuse to accept that that side is lost for the most part. So for them the situation looks much more hopeless.
She now lives from day to day, and some days she knows that she has three children, but other days she thinks she is still living with her mother and sister.
In Still Alice main character Alice shortly after her diagnosis decides that she doesn’t want to go on living when she is no longer able to answer a checklist of five personal questions. Once she cannot answer questions like ‘where do you live?’ or ‘how many children do you have?’ any more, she will get a notification on her phone to open a letter with instructions and take sleeping pills. But when she gets worse and loses her phone, those five questions are not important anymore. She now lives from day to day, and some days she knows that she has three children, but other days she thinks she is still living with her mother and sister. One day she opens the instruction letter on her computer by accident, but because she cannot understand the directions and gets distracted she ultimately does not take the pills. While reading this passage I felt an overwhelming sense of relief, because while a year ago she was certain she wouldn’t want to live on in this state, now that this understanding is gone you do not get the impression that she still wants to die. Sometime later her husband asks her if she still wants to be here, to which she answers confused; how could she be ready to leave, when she hasn’t finished her ice-cream yet?
Author Lisa Genova has a neuropsychological background and has done a lot additional research and interviews with patients and their loved ones. And that stands out. The most gripping fact is the gradual process of forgetting. No one gets fatally ill overnight and that is the same with Alzheimer’s; it starts with little clues. Everyone forgets things from time to time; a name, a word, an appointment and often we dismiss this as a result of our busy lives; stress, fatigue, worry and in most cases that is a correct assumption. For Alice it also starts with similar moments, but the point of no return is when during her daily run she can’t remember the way home; that information is suddenly gone. These incidents get worse and more frequent and noticeable for outsiders. She introduces herself twice at a party, she often repeats the exact same question and indicates more and more objects and persons as ‘thingie’.
The movie lacks the voice of Alice and the connection with her psyche.
The most powerful element of Still Alice is that you experience everything from within herself, including all the gaps and fog. This makes it extra intense when piece by piece more of her mind is crumbling away. It is pervasive that as a reader you often realize she is missing something, while she herself is completely unaware. You almost feel the urge to warn her; ‘you already said that’ or ‘you know her’. You also read a lot about what isn’t visible on the outside, like when she views her husband as ‘the man who owns the house’ and keeps her two daughters apart as ‘the mother’ and ‘the actress’.
Despite the strong performance of Julianne Moore, the above is precisely what is missing in the movie adaptation; the introspective aspect. The movie lacks the voice of Alice and the connection with her psyche. And this sadly makes the movie very flat. Also too many details have been changed or omitted which makes some scenes feel very rushed. The movie would have been better when it could have been an hour longer. It is now set to fast forward and that is a shame, because the book builds up perfectly. I am also disappointed in the execution of the majority of the characters, which lack emotional depth. Oldest daughter Anna in the movie comes across as an ice queen, while in the book she is the main advocate for keeping her mother at home. Also husband John lacks in depth, who in the book clearly struggles with a lot of contradictive and partly egocentric issues.
Still Alice is a compelling book that everyone in my opinion should read, especially before watching the mediocre movie adaptation. It helps you remember how vulnerable human beings are and how we take our mental health for granted. In spite of the hardships Alice gets dealt, she is not a character to pity; because she preserves the essence of what defines a person: being able to love.
*Levenseindekliniek is a Dutch documentary, aired 15-2-2016 by public broadcaster NTR, about a clinic that specialises in euthanasia. Of the three featured cases, one in particular about Hannie Goudriaan suffering from Alzheimer’s, stirred a lot of negative response in the Netherlands.
Check the official site of the book by Lisa Genova.
Originally published on www.kimsomberg.nl on February 21st 2016
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