Our book club read ‘Still Alice’ by Lisa Genova this last month. This isn’t a book review though. This is a feelings review – chock full of spoilers – so be warned. Feelings review – because with this book, you could like it, you could hate it – but you will find it really difficult to be indifferent to it. It will definitely make you feel and think.
Still Alice is about a bright Harvard neuroscientist who finds out she has Alzheimer’s disease at the age of 50. It is a fictional novel – but inspired by true stories of real patients with early onset of Alzheimer’s. And the fact that it is from a patient’s point of view makes it unique. There is so much about the book that made me stop for a beat and think and feel. But there is one aspect of it that resonated with me for reasons so immensely close to my heart.
Alice is a list maker plowing through life one checked off task at a time. When she starts to come to terms with the progressive nature of her diagnosis, she soon realizes that she doesn’t want the end that this diagnosis foretells. So she sets up some insurance – in her usual organized manner. She formulates a list of basic factual questions that she has to answer. She then sets up a reminder to herself to try answering these questions periodically. And if she were to fail to answer it, she gives herself instructions on how to end her life using sleeping pills she had stocked up on.
When the time comes, that she finds herself unable to get through the list of questions she had set for herself, she starts on the steps that will lead her to end her life, only to forget what she was doing and to come back to the start. One day her blackberry where she had set the alarm stops working and with that her fail safe, to avoid the ending the diagnosis will bring, is gone.
In a strange twist though, her husband had at some point stumbled on her plans for her end of life. He tries to get through the list of questions that she had set up for herself, and realizes that she is past the stage of life where she wanted to be. When he asks her, “Do you still want to be here?”, she thinks he is asking about the here and now and says “Yes. I like sitting here with you. And I’m not done. Why do we need to leave now?”
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This, for me, was the part that gave me the most pause. A woman who has been an overachiever in all aspects of her life, decides not to live to see the slow death that awaits her. A woman who has lost so much of her memories, forgets that decision and finds some semblance of happiness in the here and now.
Which of these versions of Alice should have had the say? Which of these versions of Alice do we value more?
This doesn’t feel like just a theoretical question. Not for families who have with kids with complex conditions, like ours.
In the most difficult phase of our journey, we found ourselves sitting across from two doctors. Two doctors who tried to be as delicate as possible as they asked us if we really wanted a life saving intervention for Aadya – an intervention that would also prolong her life. They tried to ask us if knowing the progressive nature of Leigh’s syndrome, it’d still be worth it to do this intervention, if it’d be right by Aadya to do this intervention. Even when we knew we’d have to one day face up to this question, for a second, this took my breath away. How do you explain to two strangers that your 5 year old lying sedated and sleepy on a hospital bed, who has disabilities and challenges that even most adults cannot fathom, still has life in her lungs. That her sleeping face hides a smile that could light up a room. That she is smart and following every conversation happening around her – in three different languages. That when the crazy noise of a sickness fades away and life settles into its rhythm, there is a quiet happiness, a being. That she is crazy excited about a little sister in her mother’s stomach. That she’ll then love that little sister with her fierce little heart sharing with her all the best parts of her life. That there is value and meaning in this life.
This was of course back when I didn’t know that there are calculations out there in the world that assign a value to a life. Did you know this? A dollar figure tied to a life. How do I know about this? I know about this because I was reading about a life-saving drug for Spinal Muscular Atrophy called Zolgensma. While the drug pricing structure isn’t shared, we know that life saving drugs like these are priced based on how many years it adds to a child’s life and what the expected economic output of this action will be. So that is one approximation of the value of a life. Some cite it as high as 7 million. Some cite it lower.
In life, as in this book, there isn’t a right or wrong answer. I’ll never know the counterfactuals and the what-ifs. In the book, John clearly decided that this is what Alice wanted. Or maybe he just couldn’t find it in himself to give her the ending that she had wanted when she was still “old” Alice. We’ll just never know.
This is where this blog ends too. I didn’t say I’ve any answers. I said I had feelings. If you have feelings too, let me know.