All of us share "the task of making meaning out of life's ambiguous bounty," Nancy Mairs writes in the introduction to this collection of essays and one short story.
Mairs' bounty has been limited by multiple sclerosis, "a chronic incurable degenerative disease," she writes, which "limits physical freedom and satisfaction--without turning either to jelly or to stone."
Her greatest adversary in these pages, however, is society, which, she writes, fails to acknowledge the presence of the disabled much as it has eclipsed the value of women.
In TV sitcoms, for example, a problem is presented and resolved "in no more than half an hour. . . . No show depicts the same problem week after week. The audience would get bored and switch to another channel."
In real life, of course, problems can go on, and on, and on, and sometimes (as is true for Mairs' physical condition since her MS was diagnosed 17 years ago) worsen.
Mairs believes fear of physical vulnerability is the reason why the disabled are not accurately or adequately portrayed. "To depict disabled people in the ordinary activities of daily life is to admit that there is something ordinary about disability itself, that it may enter anybody's life," she theorizes, so that advertisers, "who determine nowadays who will get represented publicly and who will not, deny the existence of me and my kind absolutely."
Even the language currently in vogue to describe her state strikes Mairs as a dangerous effacement of reality. In the essay "Challenge: An Exploration," Mairs calls the new phrase "physically challenged" "pure bellywash," adding "I don't see how that phrase distinguishes me from . . . say, the latest climber struggling up the face of Mount Everest." So, Mairs says, "I call myself a cripple. I do so because the word is the most accurate and precise I've found, meaning that I no longer have full use of my limbs."
In different essays, she addresses the need to be a "polite cripple" and a polite woman. As a writer firmly committed to the truthful, often blunt exploration of her life as both, Mairs can therefore be considered rude indeed. For example, she writes: "My self-esteem diminishes further as age and illness strip from me the features that made me, for a brief while anyway, a good-looking, even sexy, young woman. . . . No more lithe, girlish figure: My belly sags from the loss of muscle tone, which also creates all kinds of intestinal disruptions. . . . No more sex either, if society had its way . . . . Cripples simply aren't supposed to Want It, much less Do It. Fortunately, I've got a husband with a strong libido and a weak sense of social propriety."
Mairs states that her relentless examination of her self and her relationship to society has caused "mentors and editors (to wonder) aloud when I'll get around to some 'real work,' by which they seem to mean something perhaps less personal and certainly less 'limited' by feminist perspective." But, she says, the reality is that much more still needs to be written by women and by the disabled about their lives. They need, she states, to continue "uttering the unspeakable. Women must go on simply and without apology saying aloud what it is like to be who they are."
It's difficult, though, Mairs says, to find a market for such utterances. I know she's right. A year ago, my father lapsed into a coma. And, when two months into it, I wrote an essay about how it felt to be a woman turning 40 and confronting her mortality as well as her father's, the editor of the first magazine to which I sent it wrote me a letter calling the piece touching but "personal and unresolved"--as if by those words alone he'd established its unpublishable nature.
The danger then, for Mairs as for me, is that two, three or four pieces about the issues she is confronting can seem redundant in a way that the umpteenth article about the latest hot celebrity does not. Because we are reluctant to confront issues of disability at all, someone who does so twice may be perceived as having done so at least once too often.
And, in truth, there is some redundancy to these previously published essays. But there is also much variety. Mairs describes her trip to Zaire to visit a daughter in the Peace Corps. She details her participation in a protest at the Nevada Nuclear Test Site. In each case, her disability complicated but did not prevent her from living the life she wished to lead.
Yet Mairs disclaims heroism. "I'm only as brave as I have to be," she says, and titles a later essay "I'm Afraid. I'm Afraid I'm Afraid." In it, she states, "Radical terror . . . now grounds my life . . . any day now I'll be bedridden and unable to take care of even my most basic needs." At an earlier point, she says of her physical condition, "I am the woman I thought I could never bear to be."
Mairs writes of all this with scrupulous, sometimes discomforting honesty--and often with an unruly wit. She has already done so in her prior collection of essays, "Plaintext," and in her memoir "Remembering the Bone House."
Let us hope she will do so again.