Chapter 4
Finding Freedom in Water: Swimming as Liberation
Emily crouched on the edge of the pool platform, preparing for her first dive. Without her glasses, the black lane markers looked like slow-moving caterpillars beneath the rocking water. Her swimming teacher Ann stood coaching her as she balanced on her right leg, the blue flipper squeaking against wet tiles. People stared at her blue one-piece swimsuit and her stump hanging stiffly like a kickstand.
When she finally dived in, the cool water closed over her completely. She felt slippery and slick as the tiny rainbow trout her father taught her to catch and release. Her body felt light and remarkably even, its asymmetry balanced by the softness of the water. Ann's applause echoed against the pool walls as she surfaced. She began to swim-freestyle, then breaststroke-with the fin on her right foot making her feel like a fish cutting gracefully through water. Her stump merely bobbed like a buoy while her right leg compensated, kicking and shearing the blue water.
Swimming was Emily's first experience of her body as capable of powerful, fluid, and beautiful motion. In those moments when she rounded her back, tucked her chin, and tipped gracefully into the accepting water, she felt the beauty of movement when a person is perfectly content with their unique form, as if being any other way were unimaginable.
While visiting her cousins one summer, she left her leg unattended at the public pool to show them how well she could dive. When she resurfaced, she found it had disappeared and became hysterical. Her cousin Sarah tracked down the thief and returned the leg to her. Emily frantically wiped down the socket and hinges with her beach towel, as if removing the mark this foreign handler had left on part of her body. "He does that again," Sarah promised, "and I'll make his nose bleed." Afterward, one of her cousins always stood watch over her leg where it leaned against a plastic chair, completely covered by a towel.
At slumber parties, she clung to the leg inside her sleeping bag with both arms wrapped around it like a favorite stuffed animal. On overnight train trips as an adult, she zipped it into her coat and used it as an uncomfortable headrest. If anyone tried to take her leg, they would have to take her with it.
Water represented a rare space of freedom for Emily-a medium where her body's differences became irrelevant. The buoyancy and flow of swimming allowed her to experience grace and power in movement without the constraints and complications of her prosthesis. Yet even in this liberation, we see the anxiety about her artificial leg-the fear of its loss or theft revealing how integral it had become to her sense of self, despite its limitations. The prosthesis was simultaneously a burden and a necessity, an alien object and an essential part of her identity.
Chapter 5
The Poster Child: Performance and Identity
In 1980, Emily was chosen as the March of Dimes poster child for the Medicine Bow chapter of Albany County, Wyoming. Reporters photographed her playing ball, climbing ropes, doing jumping jacks, strolling in parks, and participating in "Jump Rope for Life." She became a local celebrity, with newspaper headlines celebrating her active lifestyle despite her disability.
For the official March of Dimes publicity photographs, she wore a blue velour outfit with a matching skirt, gold necklace, and her grandmother's silver charm bracelet. Her mother fixed her hair in high pigtails with white ribbon bows. She sat in front of their Christmas tree with her legs stretched out, wearing black Mary Janes and thick white tights, smiling for the camera flashes while trying to keep her back straight.
Throughout that year and into the next, Emily made numerous public appearances as the poster child for the nation's leading organization dedicated to preventing birth defects. She showed off her wooden leg as if it were the latest fashion accessory. Newspaper headlines proclaimed: DISABLED GIRL IS ACTIVE IN SPORTS; ALBANY COUNTY'S RAPP ATTENDS BUILDING DEDICATION; POSTER CHILD BUILDS HEART AND SOUL IN ANNUAL JUMP-A-THON. Her six-year-old grin beamed beneath the March of Dimes motto: "Help Prevent Birth Defects."
At church functions, rodeos, and community events, she spoke to crowds about how normal and happy her life was-all to raise awareness and money for research to prevent congenital birth defects like hers. She made proximal focal femoral deficiency sound attractive and unique. Her speeches began: "I might have one leg, but I'm not disabled." When adults asked how it felt to be disabled, she replied truthfully, "I don't feel different. I'm just like anyone else." Kids asked what she could do with an artificial leg, and she proudly listed: "I can walk and run and ride a bike. All kinds of things. I swim, too." When asked if there was anything she couldn't do, she confidently answered, "No, nothing."
People called her "an inspiration" and "brave," and she believed them. She thought that as long as she was inspiring and fantastic-compensating for her missing leg by being smart, cute, intelligent, and fun-she would have a normal life. She even thought it would be easy.
The role of poster child created a profound contradiction in Emily's life. On one hand, it gave her a sense of purpose and specialness that helped her cope with being different. On the other hand, it established a pattern of performance-of proving her worth through extraordinary achievement-that would eventually become exhausting and unsustainable. The irony wasn't lost on her: she was the face of an organization dedicated to preventing people like her from being born, while simultaneously being celebrated for overcoming the very condition the organization sought to eliminate. This contradiction planted seeds of identity confusion that would flower later in her life.
Chapter 6
Faith and Doubt: Wrestling with God and Body
Growing up, Emily lived in a world where God was good. She was taught to believe this, and she did. She loved the ritualistic elements of worship services, especially the sing-and-response psalms that felt like magical spells cast in the dark sanctuary. She enjoyed the slow, meditative hymns during Communion and watched her mother pray, sometimes catching her opening one eye to glare at her when Emily would stare or try to distract her.
At church, Emily felt loved. When hospitalized, older ladies from quilting circles and prayer groups sent her cards with little girls, bunnies, and flowers. "Get well soon! Love, Edith; Love, Dorothy; Love, Velma, Alma, and Ruth." Coming home, she'd find piles of gifts and cards waiting, some from people she hardly knew.
She was always chosen for glamorous roles in church musicals. After reaching a certain age, she played Mary, the pure virgin and model of perfect womanhood-a role she cherished above all others. Her thick glasses, wooden leg, and buckteeth seemed to disappear when she put on the blue robe and white headdress. She became the focus of everyone's admiration on the most important night in Christian religion, singing lullabies with shepherds and angels. People often told her, "We're always praying for you," and sometimes, "God loves you best of all."
People had been praying for Emily her entire life, yet she had an uneasy relationship with prayer. If you didn't get the answer you asked for, how could you know it was really God's answer and not just something random? She didn't like the mystery of prayer or the ambiguity of possible answers.
As she prepared for her first Communion in fourth grade, she was convinced it would be the moment of her healing. She had memorized the appropriate creeds and prayers and believed that taking the body and blood of Christ would finally transform her. Before the ceremony, Brian Tanner taunted her: "Peg leg! Emily has a wooden leg!" She shouted back, "Piece of shit!" which horrified her mother.
In Matthew and Mark, there are stories about faith the size of a mustard seed being able to move mountains. Emily wore a necklace with a tiny seed in a glass ball, believing that if she had enough faith, God would give her a new body. But when she took Communion, nothing changed-her artificial leg remained attached. Her faith had failed her.
After the ceremony, Brian was made to apologize. He gave her a drawing of herself with two perfect legs, wearing an evening gown, surrounded by flowers. But he'd drawn her with blue eyes and without glasses or a wooden leg-a perfect little girl. She felt mocked by both Brian and God. "Anyway, you were right," she told him. "I do have a wooden leg." Saying this truth gave her a strange power.
Emily's relationship with faith reveals another layer of her complex identity formation. Religion offered both comfort and disappointment-a community that embraced her, but also a theology that implied her body needed fixing. Her expectation that faith would heal her physical "defect" reflects how deeply she had internalized the idea that her body was wrong and needed correction. When divine intervention failed to materialize, she began the long process of questioning not just her faith, but the fundamental premise that her body was something to be fixed rather than accepted.
Chapter 7
The Prosthetist's Art: Creating a Body Part
Instead of marking her growth on a kitchen wall, Emily has a collection of wooden legs documenting not just her height increases since her amputation at age four, but also the evolution of prosthetic technology. Her early prostheses featured feet designed for men, while later versions included more feminine feet with delicate toes and veins. At twenty-six, she finally received a foot with adjustable heel height, allowing her to wear heels for the first time.
After years of struggling with an ill-fitting prosthesis made by Schmidt, Dr. Elliot recommended a new prosthetist named Larry Gibbons. Though excited about walking comfortably again, she felt guilty about leaving Schmidt. He had supported her dance dreams and made a leg that allowed her to twirl and leap. Their relationship was odd-transactional yet tender. Because he had made a part of her body, his care was with her; his mark was on her.
Larry's office was in a run-down brick building behind a used-car lot in Denver. The car salesmen would stare as they walked in, making Emily uncomfortable. Unlike Schmidt's office, Larry's waiting room was filled with friendly older men-mostly war veterans-who smoked cigarettes and flirted with Tanya, the receptionist with bright coral lipstick and permed blonde hair.
Emily envied these veterans in a strange way. They knew exactly how they'd lost their limbs-land mines, shrapnel, bullets. They had medals and uniforms that explained their bodies. They were heroes who had survived. Her own story felt vague in comparison-she had no dramatic moment of loss, just a birth defect with no explanation.
One veteran named Hal became her favorite. With virtually no stump at all, he was "the most one-legged person" she'd ever seen. He didn't mind taking his leg off in the waiting room when she asked. They compared stumps-his resembled "a bed skirt" or "a curtain for a little window," while hers was long and steady with scars like delicate leaf veins.
Larry's son Vince worked as his apprentice. Though physically attractive with curly blond hair and blue eyes, there was something disturbing about him. During all the years Emily knew him, he never spoke, just listened to his father and wrote on a clipboard. His palms were always sweaty and his hands often shook.
While waiting for appointments, she'd spend time with Tanya, who would file her nails or apply makeup, calling it "face decoration." She'd braid Emily's hair or apply bright-colored eye shadow and lipstick, beauty rituals that made her feel included. Unlike her mother who was naturally beautiful in a traditional way, Tanya was "too made-up" and "trying too hard," but Emily thought she looked great.
The prosthetic limb represents a unique intersection of body and technology-a custom-made extension of self created by another person's hands. Emily's relationship with her prosthetists highlights the intimate yet commercial nature of this connection. These men literally crafted parts of her body, yet the relationship remained fundamentally transactional. The contrast between her congenital amputation and the veterans' traumatic losses reveals her search for narrative-a clear story about her body that could make sense of her difference. Without a dramatic moment of loss or heroic survival, she struggled to place her experience within a recognizable framework, contributing to her sense of isolation and otherness.
Chapter 8
Phantom Player: The Struggle for Belonging
As the student manager of the seventh-grade girls' volleyball, basketball, and track teams, Emily became an integral part of the athletic world despite not being able to play. She got up at four A.M. during summer and stayed late after school to throw balls at practices and manage equipment. She kept score at games, timed races, and maintained detailed files on each player. She was the gatekeeper of secrets and gear, traveling with the team to tournaments and celebrating victories as if she'd scored the winning points herself. As her friend Sidney said, "You're totally one of us, even though you can't play on the team." Being a phantom player was good enough; managing was the next best thing to being a real athlete.
At home, she secretly performed her own versions of the team's exercises-jump rope, wall sits, running drills-working out in the basement with furious determination. Though she could never match their abilities, she persisted, driven by an irrational hope.
Despite successfully passing as "normal," she continued to nurture a secret belief in transformation. She was convinced that somewhere out there existed the perfect prosthesis-a suction socket leg that would change everything. She had rejected a surgery that would have shortened her stump to align her knees better, remembering Hal's difficult-to-manage "flaplike" stump. When she tried Vince's version of a suction socket leg, it made embarrassing farting noises when she walked. "Hey, you can just say, 'Excuse me, I had a big lunch,'" he joked insensitively, suggesting she point her finger like the male veterans did.
She felt humiliated. As a girl becoming a woman, she didn't want to be treated like "half-man" or "almost-person." The leg was also heavy, ill-fitting, and uncomfortable. Vince claimed her stump's unique shape with its natural heel and ankle bone made a better fit "impossible"-a limitation she'd heard before and one that makes her prosthetics exceptionally expensive.
Emily clung to the hope of transformation because she believed something should level the playing field, restoring what amputees had lost. Her religious upbringing taught her that in a rightly ordered world characterized by God's grace and fairness, there should be compensation for suffering. If Jesus died horribly but saved the world, surely there should be remarkable events to compensate for lost limbs.
The concept of being a "phantom player" perfectly captures Emily's adolescent experience-present but not fully participating, belonging yet separate. Her role as team manager allowed her to be part of the group without having to confront the limitations of her body in direct competition. It was a compromise that offered inclusion while avoiding potential failure or embarrassment. Her private exercises reveal both her determination and her denial-a refusal to accept physical limitations that no amount of practice could overcome.
The persistent belief in a transformative prosthesis reflects a deeper hope that technology could erase her difference and make her "whole" again. This hope was continually frustrated by the reality of available devices and the unique characteristics of her body. The religious undertones of her thinking-the belief that suffering should be compensated by grace-show how deeply her Christian upbringing influenced her understanding of her body and its challenges.
Chapter 9
Adolescence and Identity: The Struggle for Self-Acceptance
Emily's cruelty peaked in eighth grade when Dean, a boy with severe acne who sat behind her in prealgebra, slipped her a love note. Despite his kindness in helping her with math, she read his private note aloud in the hallway for cheap laughs. People teased him all year, and they worked in silence afterward. Her cruelty elevated her status, attracting the most popular boy in school, but she remained ashamed of how she'd treated Dean.
As her friends began intimate relationships with boys, she feared they saw her as she saw herself-in unfavorable comparison to fashion magazine models. At slumber parties, they'd pore over Seventeen and YM, watch Dirty Dancing repeatedly, and practice kissing on pillows. While her friends slept, she'd lie awake with indistinct fears about her future, wondering if she could ever have the normal life with a husband and children that seemed so effortless for others.
Her fears crystallized after an incident while babysitting four-year-old Sophie. While chasing her, something caught in her ankle with a soft crack, and her prosthetic foot began spinning freely. Unable to fix it, she confined them to the couch and let her trash the house to distract her. When her parents returned, she had to explain her situation-they hadn't even known she had an artificial leg. Sophie's father offered to carry her to her parents' car.
Being held against this man's chest-feeling its unexpected solidity, smelling his aftershave, seeing the patch of hair on his shoulder-was the closest she'd ever been to a non-family male. Her foot dangled awkwardly, and she felt ugly and broken. This wasn't the romantic carrying she'd imagined from movies like An Officer and a Gentleman-she was being carried like a wounded bird, a broken doll. The artificial limb only intensified her awareness of what was missing, what could never be restored.
She cried for hours afterward, unable to explain her feelings of isolation and violation. She felt inappropriate desire for the man who had held her, while believing no man could ever desire her with her damaged body. The stage of romance seemed one where she would never belong-forever behind the curtain, invisible and ashamed.
Adolescence represents a critical period in identity formation for all young people, but for Emily, the normal challenges of this stage were magnified by her disability. Her treatment of Dean reveals a common but troubling pattern-the bullied becoming the bully. By targeting someone else's physical difference (acne), she could temporarily deflect attention from her own difference and gain social capital. This behavior, while cruel, was a survival strategy in the harsh social ecosystem of middle school.
The babysitting incident marks a pivotal moment in her self-perception. The romantic and sexual implications of being carried by an adult man collided with the reality of her prosthesis's mechanical failure, creating a perfect storm of shame, desire, and fear. The experience forced her to confront the question she had been avoiding: Could she be both disabled and desirable? The cultural messages she had internalized suggested these categories were mutually exclusive, leading to profound anxiety about her future romantic prospects.
Chapter 10
The Body as Battlefield: Control and Rebellion
Sitting in Melissa's car, Emily felt momentarily seduced by the possibility of a new identity when her friend offered her an expensive black miniskirt. "You have such a tiny waist," she'd said, making Emily feel special. But as they headed to the bonfire party, panic set in. Alone in the backseat while her friends went into the Gas N' Shop, she stared at her mismatched legs-her wooden prosthesis with its metal hinges fully exposed, contrasting with her pale white right leg.
She squeezed her right thigh, disgusted with herself. "I'm fat and strangely proportioned," she thought. "My thigh is too big, my calf not muscular enough." She resolved to return to calorie counting and intense workouts. If she couldn't have two real legs, she'd make the rest of her body perfect.
As they approached the party, seeing the bonfire's flames in the distance, her anxiety peaked. She imagined herself suddenly legless, forced to hop into that crowd of whole bodies with her scarred stump exposed. The thought was so horrifying that she threw up in her lap.
"Oh my God! Gross out!" Ashley screamed, but Melissa quickly pulled over and commanded her to help. Ashley cleaned her up while Melissa retrieved her jeans from the trunk. She felt strangely victorious-she had found a way to hide her leg after all.
At the party, she stayed in one spot, barely sipping beer while watching others. Melissa got drunk, Ashley flirted with popular boys, and Emily was content to remain invisible in her jeans, protected from exposure.
Later that night, she resolved never to let anyone-especially boys-see her artificial leg or her real body. She would go on punishing diets like her mother had, work harder than anyone, and maintain perfect control. If God couldn't give her the body she wanted, she would remake it herself through vigilance and self-denial. By joining the trend of girls' obsessions with their bodies, she was ironically making herself more normal than she'd ever been before.
That night, cleaning her prosthesis with her mother's lemon-scented body splash and Avon powder, she felt both protective and resentful of her leg. They had weathered a trial together, and it had become more than just an expensive artificial device.
The miniskirt incident illustrates how Emily's relationship with her body evolved into a battlefield where control became paramount. Unable to change her fundamental physical difference, she redirected her energy toward controlling the aspects of her appearance that were within her power-weight, muscle tone, clothing choices. This pattern of compensatory control is common among people with disabilities, but it's particularly potent when combined with the gendered body pressures that affect all young women.
The development of an eating disorder represents both a rebellion against her uncontrollable physical difference and a paradoxical attempt to achieve normalcy through an abnormal relationship with food. By participating in the culturally sanctioned female pursuit of thinness, she could feel connected to other girls while simultaneously punishing her body for its perceived failures. The ritual cleaning of her prosthesis reveals the complex emotional relationship she had developed with this object-it was both part of her and separate, both necessary and resented, both enabling and limiting.
Chapter 11
Finding Community: The Path to Self-Acceptance
After her transformative experience in Geneva, Emily embraced the call to connect with disabled women worldwide. She organized a meeting with six women from different regions of the Lutheran World Federation, including her theological hero Nancy Eiesland. On their first night together, Nancy asked them to draw timelines of their lives. Despite her instinct to present herself as the "most normal" of the group, she chose honesty instead. As each woman shared her story-Ana from Argentina with her theological perspective, Martha from Ethiopia who defied shame, Yumiko from Japan with her humor, and Lizbet from Norway with her denied dreams of ministry-Emily felt a profound connection forming.
When her turn came, she drew her body's transformations through surgeries rather than listing achievements. For the first time, she spoke about her disability without mentioning being a poster child. "I think my life is about running," she admitted, and "I have always hated my body"-truths that took her breath away. The women's understanding eyes offered a sisterhood she'd never known before. That night, she slept peacefully without her usual fear of darkness, windows open to the breeze, remembering Psalm 139 about being "fearfully and wonderfully made."
Their week together produced practical recommendations for the Lutheran World Federation and created a palpable shift in the office environment. People's perceptions about disability changed simply because they told the truth about their bodies without shame or apology.
After returning home, while helping her parents pack for their move, her father brought out a box containing all her old prosthetic limbs. They laid them out chronologically-from her tiny metal brace to wooden legs of increasing size, each with its own story and nickname. Each prosthesis marked a chapter of her journey-the "clunker," the leg Brian called "peg leg," Schmidt's troublesome creation, Larry's first leg, and the one she'd worn during her obsessive exercise phase in college.
Looking at these legs in her parents' garage, she was struck by their physical history. The frayed waist strap on her high school leg showed evidence of grueling workouts and rapid weight loss. This was "Creaky Malone," which made cracking sounds in Minnesota winters. There was also the failed suction socket leg that made embarrassing farting noises, its toenails still painted from when she'd tried to personalize it.
When Emily called Dr. Elliot for clarity about her condition, he revealed something she'd never known: her disability was a spontaneous mutation in her DNA. This discovery left her angry and speechless. She'd always presented her disability as a random accident, but learning it was literally written into her genetic code felt unfair and permanent.
As she prepared to box up her legs for the final time, she realized she may never find complete peace with her body, but she had discovered ownership and voice. The body isn't meant to be solved-it's meant to tell its own story. Standing on one leg before the pieces of her past, she felt sadness mixed with quiet resignation. The only claim she can make with certainty is this: It is mine.
The Geneva meeting represents a turning point in Emily's relationship with her disability-a shift from isolation to community, from performance to authenticity. For perhaps the first time, she found herself in a space where her disability was neither something to overcome nor something that defined her entirely. Instead, it was simply one aspect of a shared human experience of embodiment, with all its complexities and challenges.
The chronological display of prosthetic limbs serves as a powerful visual metaphor for her journey through life. Each leg tells a story not just of physical growth but of emotional and psychological development-the poster child's leg, the athlete's leg, the college student's leg. Together, they form a tangible timeline of her evolving relationship with her body and her identity.
The revelation about her genetic mutation forces a final reckoning with the nature of her difference. Rather than something that happened to her, her disability is revealed as something that is fundamentally part of her-written into her very DNA. This knowledge challenges her to move beyond narratives of overcoming or compensation toward a more radical acceptance: that her body, exactly as it is, is not a problem to be solved but a reality to be embraced.
