First off, full disclosure: I have not finished reading “Still Alice” by Lisa Genova. I’m probably only about a third of the way through. But after a weekend absent of culture (I’ve been marathoning Season 14 of Big Brother — not exactly thematically fulfilling, but still oddly compelling) I can’t comment on any new tv show, movie, or completed novel.
The book has a simple premise: it’s the story of a woman in her early fifties. There’s nothing particularly compelling about Alice: she’s happily married with three children. There are the normal family issues: she doesn’t agree with her youngest daughter’s decision to go into acting, and she wishes that she and her husband spent more time together, but overall she’s content. She’s a tenured professor at Harvard, and defines herself by her independence and intelligence. Both of which are, unfortunately, among the first things to deteriorate when she is diagnosed with early-onset Alzheimer’s.
It’s not the first book to be written about the struggles that Alzheimer’s sufferers face: it is, however, the first that I’ve read, and perhaps the first to be written by somehow holding a doctorate in neuroscience who regularly writes on the disease. That science and understanding permeates the book, which feels incredibly grounded in reality. As of page 100, Alice has yet to tell her children of her diagnosis, or to inform them of its genetic basis — which may very well have passed on to all or some of them. She hasn’t told her colleagues at Harvard. She’s told only her husband, who is clearly in over his head and doesn’t know how to deal.
Any story about disease and deterioration is heart-breaking, as the reader is forced to watch from afar the horrors that it wreaks not only on patient’s health and well-being, but also on their families and friends. Most of us can empathize with the loss, and the helplessness of watching a loved one slowly leave us. But makes Still Alice so incredibly compelling is the fact that this woman, more than most characters in these tales, prides herself strictly on her intelligence and independence, and watching her realize that these traits by which she self-identifies are being taken away from her is incredibly hard to do.
I’ve recently been dealing with some health issues of my own, which is hopefully nothing more than a lingering virus that just refuses to go away. It doesn’t affect the way that I think, or feel, or perceive the world. It doesn’t alter the way that I act, or what I can do in a regular day (admittedly, it may take a bit longer to climb the stairs, and running may be painful). It doesn’t take away the essential core of “me” and it made me wonder. . .what would be that point?
We all self-define. When I was younger, it was outwardly manifested: which Power Ranger were you (I was Red, because I always considered myself to be a leader): which Hogwarts House would you be sorted into (If there were a House Slytherpuff or Hufflerin, that would be me): it was manifested by sports teams, and clubs in school, by afterschool jobs and what major you pursued in college.
Now, as I’m older, all of those manifestations have been stripped away, and I’m left with the barebones: How do I define myself, without comparing myself to others?
When it comes down to it, I’m a lot like Alice. I’m incredibly proud of my independence — almost to the point of arrogance sometimes, to the point of stupidity. And I’m proud of my intelligence. There are other facets, too, of course — I consider myself creative, consider myself loyal, and still, after all these years, prefer the position of leadership to one in the background. But if I were given one word to self-define, it would be independence.
I think that’s why “Still Alice” has struck me so hard — because I understand Alice, in a way that I have rarely understood literary characters before. I don’t just admire her, I’m not just amused by her, I don’t just want to be like her, but in a very real sense she is me. And watching her lose herself awakens a kind of terror and fear in myself. Is it enough to survive on the way that other people perceive and see us? Or do we survive on that core of strength within, based on our own self-definitions?