Over the weekend, I finished the book Still Alice, the novel that was the foundation of the movie for which Julianne Moore won her Best Actress Oscar, in 2015. I have not yet seen the movie, though it’s in my plans.
It’s a difficult thing for me to opt in for a movie about someone suffering a neurodegenerative disease. Though Alzheimer’s and ALS are very different animals (my father didn’t experience any cognitive symptoms. I understand that some ALS patients do), the experience of watching someone go through that is something less than entertainment, for me. Eviscerating, maybe, but not entertaining.
Given that, I can’t really explain why I read the book. I checked a bunch of audiobooks out from the library, and when I finished (don’t judge me) Jon Cryer’s memoir, this was the most appealing of the remaining options. I downloaded it and braced myself.
It’s the story of Alice, told from Alice’s perspective. Alice is a 49-year old Harvard professor of linguistics. She’s married to another Harvard professor, she’s breaking ground in her field, she’s mother of three grown children, and she’s starting to be concerned about some memory lapses.
You take Alice through the course of her realizing there’s a problem, being diagnosed with early-onset Alzheimer’s, tests, treatments, wins and losses with her family, with her spouse, with her job, with the progression of the illness. You feel (some of) her frustration as things that came easily become harder. You see (some of) the shock and grief of her condition.
I don’t want to go too far into spoiler territory, here, because there’s a central question to answer when you grapple with a condition like this. I have a perspective about that central question and about how and to what extent the author resolved it, and if I go too far into that, I think I’ll convince people they don’t need to read a book that I think is eminently worth reading.
With that said, one of the things that has made a lasting impression on me is the extent to which the novelist let me get inside a character who’s grappling with something outside my experience. I am keenly aware that while my life was deeply and profoundly affected by my father’s ALS, only my father knew ALS from the inside. Only he knew the full extent. I could pick up on frustrations, I could see changing social dynamics, I knew or came to understand over time its effect on me, but only he knew the truth of his experience, and in many cases, he didn’t have the blessing of distance from it or time to gain perspective about it. I appreciate this novelist’s window into the patient’s experience, understanding that it’s its own kind of shadow play, compared to the real thing.
It has made me think that I want to find a way to share some of the singular moments of my life. What was it to be me in that moment? I’m not positive that those moments will ever be for unfiltered public consumption, but if there’s a gift in my attempt to convey the truth of those moments for someone else the way there was a gift in Still Alice for me, I’ll try to give it.