“In examining disease, we gain wisdom about anatomy and physiology and biology. In examining the person with disease, we gain wisdom about life.” – Oliver Sacks
What does a disease do to you? It changes your body and attacks your energy reserves. It changes your psychological makeup, changing forever who you are (or who you were meant to become). The landscape is forever altered. It is foolhardy to think that it’s possible to go back to being the person you once were. And with time you realize, like with everything in life, you have to do the best with what you have got (left).
During my student days I was interested in the chapter on neurodegenerative disorders and was particularly curious about Alzheimer’s (I wonder if it was because of Sanjay Leela Bhansali’s Black) because of what it does to a person. I had often prided myself on having a great memory, remembering stuff that mattered (obviously I am not talking about textbooks) easily but things change with time.
I had wanted to read Lisa Genova’s Still Alice for a while and I was excited when I found a copy in the book fair last year. I read the author interview at the end of the book but found that I would not be able to handle such a topic then. I couldn’t bring myself to read it sooner fearing what I would find and, more importantly, how the dots would connect.
Losing your mind is a big deal. Memories are integral to how we remember the past, and connect it with the present. It is through the prism of memories we see ourselves and others. Armed with memories we navigate the choppy waters of future certain of at least where we come from, if not who we are. What if the sense of self you have built over years is taken from you suddenly?
Still Alice deals with the struggles of Alice Howland, a brilliant linguistic professor. when her life is torn apart by early onset Alzheimer’s and how she and her family learn to cope with the ravages of the illness – with a person left with a mind, not as sharp as she used to be but deep down still remains the same person. How caregivers deal with the altered circumstances, the ugly reality, the frustration and helplessness at not being able to find a way out from the messy tangles is hard to read about. The ravages of the disease diminishing a person slowly and seeing a much loved person vanish before their very own eyes almost becoming a stranger is heartbreaking.
Will people still see Alice or see through her?
When will I no longer be me? Is the part of my brain that is responsible for my unique ‘me-ness’ 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?
Still Alice is compulsively readable and I love the author for putting a compelling narrative of Alzheimer’s on the map but some characters weren’t fully realized and were shown only as good or bad whereas people are far more complex than that. Her family was supportive almost to the point of being angelic when in reality it might be far from the truth. Illness takes a huge toll on the caregiver and the family’s happiness frays around the edges. Reality is a bitter pill that unfortunately cannot be swallowed in one go.
The book was engrossing and I felt for Alice but I wanted more depth (because I hadn’t seen the film then) and also, how the medical industry (my experience tells me it’s the correct word to use) views the disease, to get the complete picture.
I recently saw the movie nearly a year later so I don’t remember how the book ended. The movie ends with the following lines by Lydia, Alice’s daughter, played with an intensity that only Kristen Stewart could have brought to the part. Along with Julianne Moore who plays Alice, she is the beating heart of the movie.
“Nothing’s lost forever. In this world, there’s a kind of painful progress. Longing for what we’ve left behind, and dreaming ahead.” – Angels of America.