The whole truth

WE toss the phrase “poster child” around with unexamined irony. She’s the poster child for procrastination, we say. He’s the poster child for pharmaceutical abuse. Easy, smug humor. Few of us think about what life might be like for an actual poster child, who helps raise awareness and funds by becoming an ambassador for a charitable organization. The March of Dimes, a venerable group dedicated to preventing premature births and birth defects, is famous for its poster children, and Emily Rapp was perfect for the role.

The redheaded daughter of a nurse and a Lutheran pastor, Rapp was 6 in 1980 when she was chosen to represent the March of Dimes in Wyoming. Smart and cheerful, she basked in all the attention as she was photographed playing, jumping and climbing. “I showed off my sleek wooden leg as if it were the latest fashion accessory,” Rapp reports. She was born with a congenital bone-and-tissue disorder called proximal focal femoral deficiency, and this caused her left leg to be undeveloped. Beginning at age 4, Rapp endured a sequence of traumatic operations, during which much of the leg was amputated in preparation for the fitting of a prosthesis. Each procedure was followed by a long, brutally uncomfortable and foul imprisonment in a body cast. Rapp’s precise and forthright descriptions of her exhausting physical ordeals and complex psychic wounds are simultaneously harrowing and fascinating, and they foster a strong bond between writer and reader.

One drolly macabre aspect of Rapp’s story of the triumph of mind over body is her impeccably matter-of-fact accounts of many frustrating visits to prosthesis shops -- shockingly filthy, oddly disreputable holes-in-the-wall in seedy Denver neighborhoods. Unfazed, at least to the casual eye, young Emily, usually the only female client, works the room, hopping around on one leg and befriending war veterans who lost their legs in combat, men she describes as “regal and honorable: kinglike.” The uninitiated reader will learn more about how artificial legs are made, adjusted and worn than one can imagine and be appalled to discover that the business of prostheses was positively medieval during the Reagan era.

Not only are the wooden legs heavy and fastened crudely and uncomfortably around the waist, but Rapp also can’t find any that are designed for girls or women. The bulky devices creak and rub, and yet Rapp is irrepressibly athletic: She runs, skates, swims and dances; she loves downhill skiing. She is also an outstanding student -- in short, a fervent overachiever, in keeping with her poster-child status. During her reign, bubbly and positive, she makes numerous public appearances, giving peppy speeches. Rapp writes, “I explained myself away with a great deal of youthful zeal and confidence. ‘I was born with a different body,’ I said, ‘but it hasn’t stopped me. If you believe in yourself, you can do anything.’ ” She likes being inspiring and “fantastic.” She feels “special, interesting, extraordinary, and better than the average girl.” She thinks she can more than make up for her missing leg with high energy, charm and accomplishment.

But as Rapp enters the tunnel of adolescence, it becomes clear that her zestfulness won’t cut it. What is needed is physical beauty. After years of denial, she is finally forced to confront what others see when they look at her. Rapp concentrates her teen misery into the tale of one excruciating summer night in 1990. Her family has moved to Nebraska, a place she dislikes. Always careful about concealing her leg, Rapp can’t resist the black miniskirt a glamorous friend casually offers to lend her. Seated in the backseat of the car on the way to a kegger, Rapp realizes with, literally, sickening clarity just how dreadfully wrong her outfit is. She has never felt more hideous and alone.

Microscopically rendered, this wrenching scene will resonate with anyone who has ever felt despair over her appearance, however innocuous her perceived flaws. As Rapp wryly observes, “In joining the trend of girls’ obsessions with their bodies and adopting pathologies around food, I was in fact making myself more normal than I’d ever been before.” Determined to make herself more attractive in an attempt to shift attention away from her artificial leg, Rapp adopts a punishing exercise routine matched by minuscule allotments of food.

Away at college and equipped, finally, with a state-of-the-art prosthetic limb, Rapp bravely opts for a year abroad in Dublin. There she feels liberated and confident. Convinced that travel is key to her happiness, she applies for and receives a Fulbright scholarship, and she chooses to go to Seoul, South Korea. And it is there, so far from home, that “the poster child for strength and determination” comes spectacularly undone.

As a pastor’s daughter, Rapp places religion and faith at the center of her life, and throughout her measured and resonant memoir, she traces her spiritual journey from a child’s simple belief in God’s power and receptivity to fury over her unanswered prayers to her intellectual inquiry into what she calls the “theology of wholeness.” Eventually, Rapp derives strength and comfort from other disabled women within the church community. Then she takes up the healing practice of writing, putting the often maligned yet undeniably effective memoir form to excellent use.

The memoir is often drubbed for its narcissism, its whininess, its suspect mincing across the line between fact and fiction. How can a writer accurately re-create conversations that took place 20 or more years ago? Now memoirists suffer for the sins of James Frey, who became not a poster child but the subject of a Most Wanted poster when his bestselling memoir and Oprah Book Club pick, “A Million Little Pieces,” was debunked on the Smoking Gun, a Court TV-owned website. Frey was pilloried on “The Oprah Winfrey Show” and “Larry King Live,” and people referred to the book as “A Million Little Lies.”

But by and large, Rapp approaches the memoir as a supple, revelatory, involving and generous genre. Who isn’t curious about the private lives and inner thoughts of others? Who doesn’t relate to a writer who tells the story of her or his life in the hope of making sense of experiences and emotions, struggling to extract some scrap of redemptive wisdom from pain, or at least a bit of mordant humor? Memoirs can be poetic, riveting, transforming, sexy, tragic and hilarious, sometimes all at once. Do writers write memoirs as a form of therapy? Absolutely. And the best memoirs are cathartic for the reader too.

Rapp still shoulders the responsibilities of a poster child, offering up her life story to illuminate the truth about disability, its tough day-by-day reality and the often insensitive response of the able-bodied: the recoil, the stare, the patronizing offers of assistance, the intrusive queries. She offers a fresh perspective on our obsession with physical perfection, especially the crushing expectations for women, and she writes delicately about the fears that disability engenders regarding intimacy and sex. Rapp’s insider’s view of the history of prostheses deepens our empathy and admiration for those who depend on artificial limbs, a growing population, once again, in yet another time of war and horrific injuries. Memoir, the conduit from the personal to the universal, is the surest way into the kind of significant psychological, sociological and spiritual truth Rapp is engaged in articulating. And there isn’t one false note here. Not one inauthentic moment. No cheap manipulation. No self-importance.

“Poster Child” brings to mind other incisive memoirs by valiant, thoughtful and talented women who have coped with disability complicated by sexism: Nancy Mairs’ piquantly frank essays, Lucy Grealy’s blazing “Autobiography of a Face” and Katharine Butler Hathaway’s lyrical 1943 memoir, “The Little Locksmith.” In her first book, Rapp isn’t quite as fine a literary stylist, but her cauterizing specificity is compelling, her candor incandescent and her intelligence, courage and spiritual diligence stupendous.

One final note on memoirs. So many expose traumatic childhoods and epically dysfunctional if not downright criminal parents that it is a pleasure to read about Rapp’s extraordinarily loving, generous and steadfast mother and father. *