"Still Alice"

OPENING LINE
Even then, more than a year earlier, there were neurons in her head, not far from her ears, that were being strangled to death, too quietly for her to hear them.


CLOSING LINE
"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."


I read “Still Alice” while in Europe this summer and I practically devoured it whole, not to mention cried saltwater tears on the beach more than once. It is a quick, yet powerful, read. It is extremely poignant and touching, not to mention eye-opening to a disease that I knew little of beforehand.

The book deals with the story of Alice Howland, diagnosed with early onset Alzheimer’s disease. She is only 50 years old and is at the height of her career as a Harvard professor of linguistics and cognitive psychology. She is a vastly intelligent woman who prides herself on her significant mental abilities, and ironically she is diagnosed with a degenerative disease where she steadily loses those mental abilities.

It is the tale of a heartbreaking illness, one that is normally associated with the elderly. This book tells a different story. It shows the progressive decline and devastation of a woman’s mind and body, an otherwise completely youthful, healthy, and vibrant mind and body. It’s scary to think that everything you are, your very identity, can start to disappear from you. It’s not just the memory lapses and the forgetting where your keys are. It’s forgetting who you yourself are, what defines you. As expressed in the book: “More and more, she was experiencing a growing distance from her self-awareness. Her sense of Alice-what she knew and understood, what she liked and disliked, how she felt and perceived-was also like a soap bubble, ever higher in the sky and more difficult to identify, with nothing but the thinnest lipid membrane protecting it from popping into thinner air".


Everything becomes mush and everything is foreign, even the simplest item as a toothbrush or the simple act of going to the washroom or walking properly up stairs doesn’t make any sense to her. The progression of the disease, the quick descent, is scary to witness, especially from the perspective of Alice herself, the voice of the book. You experience her fear, her confusion, her frustration and her despair. As the book progresses, Alice fades away, a shadow of her former self. You feel like a friend or family member watching her decline from the sidelines, hopeless and helpless to slow the process down, as she is shriveled down to only the simple moment by moment thoughts, child-like, lost. The reader participates in that loss, and loses Alice slowly just like Alice loses herself.

But what the book, or Alice, also makes you realize, is that while outwardly she is fading way and descending into a mental abyss, she is still Alice. She is still there and she is still human, not a shell, not just defined as being an Alzheimer’s patient. Alice does not want people to act as if she isn’t even there, because she is, though buried deep inside herself. She wants you to find her. She is still a wife, a mother, a scholar, a human being… worthy of respect and capable of love. Alice gives a speech at an Alzheimer’s conference earlier on in her progressive mental decline (while she is still able), that really highlights the premise that she is “Still Alice”, they are some of the most moving lines of the book and really drive home the reality of her experience:

“I have no control over which yesterdays I keep and which ones get deleted. This disease will not be bargained with. I often fear tomorrow. What if I wake up and I don’t know who my husband is? What if I don’t know where I am or recognize myself in the mirror? When will I no longer be me? Is the part of my brain that’s responsible for my unique ‘meness’ vulnerable to this disease? Or is my identity something that transcends neurons, proteins, and defective molecules of DNA? Is my soul and spirit immune to the ravages of Alzheimer’s? I believe it is.

Being diagnosed with Alzheimer’s is like being branded with a Scarlet A. This is now who I am, someone with dementia. This was how I would, for a time; define myself and how others continue to define me. But I am not what I say or what I do or what I remember. I am fundamentally more than that.  I am a wife, mother, and friend. I still feel, understand, and am worthy of the love and joy in those relationships.

I am not someone dying. I am someone living with Alzheimer’s. I want to do that as well as I can possibly do. My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. Some tomorrow soon, I’ll forget that I stood before you and gave this speech. But just because I’ll forget it some tomorrow, doesn’t mean that I did not live every second of it today. I will forget today, but that doesn’t mean that today did not matter.”

This idea of living in the moment is also illustrated by Alice and her butterfly necklace. It was a necklace that belonged to her long deceased mother that she took to wearing regularly once diagnosed. For her, butterflies symbolize hope: “She liked being reminded of butterflies. She remembered being six or seven and crying over the fates of the butterflies in her yard after learning that they lived for only a few days. Her mother had comforted her and told her not to be sad for the butterflies, that just because their lives were short didn't mean they were tragic. Watching them flying in the warm sun among the daisies in their garden, her mother had said to her, see, they have a beautiful life. Alice liked remembering that.” I think the butterfly necklace helps Alice to remember that though her life will be short, at least her conscious Alzheimer’s-free life, she is not a tragedy. She lived and she loved and she is still living and loving. I think this is also why she calls her suicide plan ‘butterfly’, because she doesn’t want her short-lived life to become tragic. She doesn’t want to get to that point of tragic non-existence, so that people will remember her struggle more than they do the beauty in it, in her.

Despite all of this sadness, the book is not sappy or sentimental, it is real and raw. One of the most real parts of the book that hit home was when she tells her children of the genetic component to her disease and how they could all be tested, if they choose to be, if they want to know whether or not they will develop the disease later in life. I don’t know if I would want to know that I will develop a deadly degenerative disease. It would affect how I live my life, my day to day, my choices. Two of the children decide to get tested and the youngest does not. In one way I would want to know, in another I wouldn’t. If I knew, I would live my life differently, maybe for the better or maybe for the worse. I would rather live my life on the edge of forever, than the edge of oblivion.

The second very real concept for me was the relationship between Alice and her husband John, and how he responds and deals with her diagnosis and condition. At some points in the book, he comes off as an asshole and selfish, avoids her and the situation because he can’t bear to see her recede into nothingness, without sympathizing that she is the one actually receding into that nothingness. But I couldn’t imagine having my spouse sitting right in front of me and not knowing me, how heart-wrenching that would be, how I would deal with it. To live your life alongside someone for decades, be partners and best friends in every sense of the word, and that to be taken, to disappear, like it never happened in the first place. The person you love to be taken. Not due to cancer, or accident, or other illness. To have the same person you have known and loved for years, lose you. It hits home, and breaks my heart, right here:

Alice : “I miss myself.” John: “I miss you too, Ali, so much.”

Anyway, I’ve blabbed long enough. But point being, amazing book, worth a read. Sad yes, but true, real. And as if we didn’t need another reminder, life is short. Live it, love it.

[image via Lisa Genova]