All of us have (or will have) a dementia story. Here's mine: Ten years ago, my father was diagnosed with Alzheimer's at age 80. His wife of 20 years began divorce proceedings that month.
My wife, Katherine, and I invited Dad to move from Arizona to Virginia to live near us, and fortunately he accepted. For a few years, we all enjoyed each other's company, but over time, Katherine and I agonized as he lost his ability to think, talk, comprehend his environment and care for himself. A retired physician and hospital president, he knew what his prognosis meant.
"I hope to God I die of something else," he wrote in a journal.
Though Dad handled the situation with impressive grace and humor, I found the experience—including his death two years ago (from Alzheimer's, alas)—to be exhausting and traumatic. Last year, my mother's sister died of Alzheimer's. With dementia on both sides of my family, I face the terrifying prospect that I may have a higher-than-average chance of developing it. Unfortunately, anyone who grows old is somewhat likely to get it.
Sandra Bem, my favorite Stanford professor and a woman who in the '70s fundamentally changed the way I understand myself and the world, approached the disease in a way that shocked but also inspired me. I learned of her death last May via Facebook. Her obituary in the Pittsburgh Post-Gazette said it was suicide.
"When she was diagnosed four years ago with Alzheimer's," it read, "she said she would end her life while she still could when the disease became too debilitating to continue."
When I was in my 20s, I became fascinated by the ethical, personal, physical and spiritual issues related to death and dying. I volunteered at hospices and trained other volunteers there. Along the way, I became adamantly opposed to suicide. People who felt that desperate or hopeless needed better therapy, better drugs, better spiritual guidance or more love, I argued with any who would listen.
But Bem has had a way of affecting my life choices over the years.
When I arrived at Stanford in 1974, I was a 6-foot-2-inch basketball player who preferred pants to skirts and girls to boys. My theme song was Meg Christian's catchy "Ode to a Gym Teacher," which describes a girl's crush on "a big, tough woman, the first to come along, who showed me being female meant you still could be strong."
Bem, who taught psychology at Stanford from 1969 to 1978, offered a concept that then was radical: Human beings behave in stereotypically feminine or masculine ways because of social pressure to do so. When we resist that pressure, we free ourselves to choose behaviors, interests, attire and even sexual partners based on preferences that have nothing to do with whether we happen to be female or male.
Before Bem came along, measures of femininity and masculinity were constructed as polarities. But through an influential tool Bem created in 1974, the Bem Sex Role Inventory (BSRI), people could score feminine, masculine, both or neither. Those who scored both were called androgynous, a term she popularized. Her 1975 research suggested that androgynous people—those who are comfortably, adaptably human—were the most mentally healthy of all.
Imagine my delight at learning how I fit into the schema—I was androgynous, and that was a good way to be, as confirmed by the latest Stanford research! Yet I struggled with the gender-derived roots of that word. I remember discussing that aversion in class. "Shouldn't the word itself transcend gender?" I asked one day.
"Yes," was her immediate reply. "Androgyny is simply the best we can do right now."
As Bem's research assistant (we all called her Sandy), I'd show up at her office after practice, my hair sweaty, a workout bag dangling from my shoulder. I towered over this compact, 4-foot-9 professor. We would joke about our heights, and she pretended to be upset about her limited prospects for basketball stardom. Under her tutelage I blossomed, feeling increasingly free to be all of who I am: compassionate and competitive, tender and tenacious.
Photo: Jonathan TimmesLike Bem, my central passion has been to challenge long-standing cultural beliefs. Using her work as a springboard, I created a unique career writing about sports as a feminist issue. I explored such topics as competition; coed sports; cheerleading; homophobia; and rape and domestic violence by male athletes in hyper-masculine sports. I encouraged girls and women to discover and develop their own strength; to compete openly with anyone; to call themselves athletes.
Bem—in her characteristically outspoken fashion—reminded her loved ones periodically about her plans to carry out the suicide. Last May, her family held a memorial service for her and with her, reminiscing about all she had accomplished. "She just listened . . . and . . . would say, 'Wow, I did that? Amazing!'" her daughter Emily told an NPR reporter in a show broadcast the following month.
"It was just so obvious that this is about as good as it gets for a human exit," Emily said. "She was surrounded by everyone who loved her; they were telling her how and why they loved her. This was not a bad way to go."
As planned, Bem ingested pentobarbital (as prescribed in The Peaceful Pill Handbook) two days after the memorial service. With her husband, Daryl, by her side, she lay down in bed and died.
I feel less afraid of dementia now. Like Dad, I hope to God I die of something else, but I now see suicide—if preceded by frank discussions with loved ones—as potentially empowering.
Little did Sandy Bem realize in 1974 the degree to which she was affirming my life choices and launching my career. Nor could she have known, in 2014, that her carefully reasoned suicide would arm me (and perhaps others) with death choices, too. Emboldened by my brave professor, I'm facing my future with more courage.
I sure hope I thanked her.
Mariah (Maggie) Burton Nelson, '78, a former professional basketball player and sportswriter, is vice president of innovation and planning at ASAE: The Center for Association Leadership.
