Still Alice
by Lisa Genova
292 pages
I grabbed this book on a whim when I saw it on an endcap at Target. A quick glance at the inside cover told me it was something that was going to be painful to read, but that I must get through. The story is the diagnosis, consequences, and changed life of Alice, a 50 year old Harvard professor with a family and a career, who discovers after a series of memory lapses and disorientations, that she is suffering from early-onset Alzheimers disease.
My grandmother has been suffering from Alzheimer's for several years. She's no longer the grandmother I remember from my childhood and adolescence. The toll on her is of course tremendous, but the mental and emotional toll on her family is equally horrific. Most books written about Alzheimer's are told from that perspective - the viewpoint of the victim's family or caregiver. Stories of decline and watching a loved one forget who you are; the burden of caring for a person who can be extremely volatile and whose personality and essence can change by the hour.
What makes Still Alice special is that it's not told from the outside - it is told from the inside... from the viewpoint of the Alzheimer's patient. Genova tells the course of Alice's battle with the disease through her mindset, and it's equally fascinating and terrifying. I'm going to highlight a few passages; thinking about them through Alice's eyes allows me to see my grandma's life and actions in the last few years in a different light.
(A discussion between Alice and her daughter Lydia post-diagnosis)
"Mom, what does it feel like?"
"What does what feel like?"
"Having Alzheimer's. Can you feel that you have it right now?"
"Well I know I'm not confused or repeating myself right now, but just a few minutes ago, I couldn't find [the word] 'cream cheese,' and I was having a hard time participating in the conversation with you and your dad. I know it's only a matter of time before those types of things happen again, and the times between when it happens are getting shorter. And the things that are happening are getting bigger. So even when I feel completely normal, I know I'm not. It's not over, it's just a rest. I don't trust myself."...
Lydia didn't flinch and stayed interested, and Alice relaxed.
"So you know when it's happening?"
"Most of the time."
"Like what was happening when you couldn't think of the name for cream cheese?"
"I know what I'm looking for, my brain just can't get to it. It's like if you decided you wanted that glass of water, only your hand won't pick it up. You ask it nicely, you threaten it, but it just won't budge. You might finally get it to move, but then you grab the saltshaker instead, or you knock the glass and spill the water all over the table. Or by the time you get your hand to hold the glass and bring it to your lips, the itch in your throat has cleared, and you don't need a drink anymore. The moment of need has passed."
"That sounds like torture, Mom."
"It is."
It's incredibly frustrating when there's a word on the tip of your tongue, and you can't spit it out. From the book's descriptions, it seems like that's one of the most common problems initially for Alzheimer's patients; looking, staring at an object that you want, or trying to tell someone what you need, and the word just won't appear.
This was another scene in the book that hit home...
She sat up in bed and wondered what to do. It was dark, still middle of the night. She wasn't confused. She knew she should be sleeping... She'd been having a lot of trouble sleeping through the night lately, probably because she was napping a lot during the day. Or was she napping a lot during the day because she wasn't sleeping well at night? She was caught in a vicious cycle, a positive feedback loop, a dizzying ride that she didn't know how to step off. Maybe, if she fought the urge to nap during the day, she'd sleep through the night and break the pattern. But every day, she felt so exhausted by late afternoon that she always succumbed to a rest on the couch. And the rest always seduced her to sleep...
With all the pills I'm taking, you'd think at least one would have drowsiness as a side effect. Oh, wait. I have that sleeping pill prescription.
She got out of bed and walked downstairs. Although fairly confident it wasn't in there, she emptied her baby blue bag first. Wallet, BlackBerry, cell phone, keys. She opened her wallet. Credit card, bank card, license, Harvard ID, health insurance card, twenty dollars, a handful of change.
She rifled through the white mushroom bowl where they kept the mail. Light bill, gas bill, phone bill, mortgage statement, something from Harvard, receipts. She opened and emptied the contents of the drawers to the desk and the file cabinet in the study... She opened the junk drawer... This drawer probably hadn't been organized in years. She pulled the drawer completely off its tracks and dumped the entirety of its contents onto the kitchen table.
"Ali, what are you doing?" asked John.
Can you remember what she's looking for? When John asks Alice this question, she can't remember and therefore can't answer him. He yells at her to go back to bed, that they'll look for it in the morning. So Alice goes back to bed. She lies there not able to fall asleep again. And she thinks about how she's napping a lot in the afternoons... and how her pills ought to make her drowsy... and how she has a prescription for sleeping pills... The scene ends with Alice walking back downstairs to look for her prescription.
I have seen and heard about this countless times at my grandparent's house. Grandma gets it in her mind that she needs to find something - a receipt, a photo, a specific piece of jewelry that she wants to give one of the granddaughters. Her confusion over looking for it can last days, with some version of the above scene's cycle repeating over and over again. It's unbelievably frustrating for those around her; I don't know if it's worse for her or if it's slightly better because at least she doesn't remember that she's attempted to look for the same postcard for two days.
The book is heartbreaking.
I finished it in two days.
The effects on
Alice’s relationship with her husband are also addressed, and as a girl set to take vows of “in sickness and in health” a short time from now, it gave me pause.
How would I survive if NavyGuy had a degenerative disease?
What if I had to watch him change from the man I love, my partner, my companion, and my best friend, to a man I no longer recognize?
What if the tables were turned?
How would we move forward?
How will he survive if I’m not able to help him find his lost jacket or the extra box of razor blades in the bathroom?
I’m forcing NavyGuy to read this book next, and I’d be willing to lend it out to anyone who requests it after he’s done.
It’s that good, and that important.
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