Brand building through storytelling

What remains when the intellect is gone

It happens at least once a week. I’ll sit down to e-mail someone whose face is vivid in my mind—and I won’t remember her name. I’ll start recounting a story to my husband—and he’ll remind me that he heard it yesterday. Or I’ll find myself reaching for a word I just know I know. So why has it plummeted through yet another crack in my middle-aged memory?

The health gurus tell me not to worry. Tip-of-tongue moments, they say, are just part of life in the wisdom years. But still I ask myself: is this how it starts? I have good reason to fear the great unraveling known as Alzheimer’s disease. It runs in my family. It struck my mother’s sister, beautiful and generous, in what should have been her prime. By the time she reached the age I am now, my aunt was already far gone.

Still Alice FinalSo I was in no hurry to read Still Alice, the best-selling novel in which the disease overtakes a dynamic, accomplished and forward-looking woman of—God help me!—50. I didn’t want to care about Alice Howland—wife, mother and Harvard neuroscientist—only to see her erased. But I had a long flight ahead, and a little more room in my carry-on bag. By the time we landed in Hong Kong, I had finished the book with mingled grief and exhilaration. I had underlined so many spot-on details that I wondered how the next vacation read could enthrall me as this one had. I missed Alice. Far more than the achiever she had been on page one, confident and a little complacent, I missed the tenacious patient she became, striving for a sense of wholeness as her brain begins to fail.

I returned to page one. I started over. And now here I am to say, “You’ve got to read this book.”

First time novelist Lisa Genova isn’t one of those authors who enchant you with word craft. A Harvard PhD in neuroscience, she employs a crisp documentary style, no more intrinsically dramatic than a family photo album. Domestic shot: Alice the take-charge wife, tracking down her husband’s lost keys with the efficiency that she’s about to lose. Workplace shot: Alice the acclaimed psycholinguist, unaccountably stuck for a word in mid-lecture. Neighbourhood shot: Alice the jogger, panicked to find herself lost within a few blocks of home. What’s going wrong with these pictures? Alice goes to her family doctor, whose talk of stress and sleep deprivation will seem eerily familiar to any mid-life woman with a health complaint that eludes the standard tests. Perhaps Alice would like to wait and see?

Lisa Genova records the entire conversation (and the subsequent ones with specialists). In less assured hands, this clinical precision would make tiresome reading. Yet here it underscores the Twilight Zone quality of Alice’s mounting terror, her still-unspoken awareness that the world as she has known it is already irreparably broken.

Mid-life is supposed to be a time for second chances, for recovering the pieces of oneself that get pushed aside in the rush to get the kids off to school, the mortgage paid down and the next promotion secured. Like many ambitious women of her generation (and mine), Alice has allowed career to trump family. She has told herself that someday she’ll patch things up with a rebellious daughter; someday she and her husband, a driven fellow scientist, will restore the spark to their neglected marriage.  (“You can have it all,” the saying goes, “just not at the same time.”) As an Alzheimer patient, she has only a fading here and now. She says to her husband, “I don’t know how much longer I have to know you.”

When Alice first learns her diagnosis, she makes a plan to kill herself before she forgets who she is (a typical reaction among early-onset patients, according to Genova). She struggles to continue her work: in one subtly devastating scene she’s puzzled by the absence of students in the hallways, then goes home and catches sight of her reflection in the window. She’s wearing her nightgown and it’s past 4 a.m.

Alice wants to be more than “a cognitive psychologist with a broken cognitive psyche.” But who is that person? She summons the resolve to find out.

In the process, she starts a support group for people with early-onset Alzheimer’s. She softens toward the rebel daughter and lambastes her husband for proposing that to put a new job (and move to another city) ahead of a sabbatical year with her: “You’re losing me. I’m losing me. But if you don’t take next year off with me, well, then, we lost you first. I have Alzheimer’s. What’s your fucking excuse?”

What I’ve always feared most about Alzheimer’s is the constant, accelerating humiliations. Being spoken about, not spoken to, as if you’re no longer human. Wondering who these people are who seem to think you’re part of their lives, and being ashamed to let on (no wonder Alzheimer’s patients speak less and less). Coming up with a sharp observation that holds everyone’s attention, only to destroy your golden moment by repeating it a few minutes later while faces freeze in polite embarrassment. Lisa Genova took me by the hand and made me feel the sting of mental diminution. More surprisingly, she showed me what remains when the intellect is in tatters.

We all know it takes courage to fight cancer. Lately I’ve argued in speeches that standing up to mental illness takes just as much gumption. But until I read Still Alice, it hadn’t occurred to me that Alzheimer’s can also reveal moral fibre and passion for life. “My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for?” Alice says in an awareness-raising speech that made me want to cheer for her. “I live each day. I live in the moment. Some tomorrow soon, I’ll forget that I stood before you and gave this speech. But just because I’ll forget it some tomorrow doesn’t mean that I didn’t live every second of it today. I will forget today, but that doesn’t mean today doesn’t matter.”

 

Posted by Rona

Leave a Reply

Stay up-to-date with Rona.

To see what’s on my mind these days, friend me on Facebook.

Miss my old site?

Visit the archive to find your favorite blog posts and Chatelaine editorials or browse my published articles. Sorry, I’m not blogging anymore.