Beautiful Monsters: Living with a Prosthetic Limb

Ruminating on life with a prosthetic limb.

Prosthetic Leg

We are easily reduced to the sum of our parts, and sometimes we are reduced to only our parts. As a woman who wears a permanent machine, I felt and still feel this reduction acutely.

Photo by Australia Department of Foreign Affairs and Trade/www.flickr.com/Photos/dfataustralianaid/technowannabe

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Ever since there have been wars, physical anomalies, accidents, aging, and bodily improvisation, there have been cyborgs — people who are half machine, half body. When one part of the organic organism does not function the way it should, someone crafts a part to fill its place, to accomplish the needed task. Artificial legs made of iron. Wooden-wheeled wheelchairs. In the last century, the definition of a cyborg has of course deepened and broadened. Prosthetic limbs now contain computers that work with the living person’s brain, signaling the parts to move. Humans — part human, part machine — have always existed: imago dei sprung from human invention and creativity.

Since the time I learned to walk, I have worn a machine. Made of disparate parts, I have, like Frankenstein’s monster, moved as a hybrid person through the world, an amalgamation of mechanical parts that enable me to live and thrive. The correct functioning of my artificial part was as essential to me as food or drink, safety and shelter. Without it, I could not be at home in the world.

Born with a congenital birth defect that required the amputation of left foot at the age of four, I began my toddler life in a metal brace secured to the body by Velcro straps and a foam “bump” under the left foot that made my legs even, or “line up,” as we said (“Is it lined up? Do you feel lined up?” the brace outfitter would ask). The brace helped me learn to walk and then kept me walking. For years, whenever I had an art assignment in school, I would look at the lines on my drawing of a flower or a bear’s two paws together, holding a pot of honey, and think of the lines of the human body and how both were meant to be even and symmetrical. My first brace was a primitive creation, all metal and easily soiled cloth, with a clickety-clanking noise, a literal cage for the smaller left leg that kept it straight and allowed it to swing through after the right leg, the “lead leg,” took a step forward. One step, two step, three step. The dance of a broken doll.

After the amputation of my foot, I had subsequent “modification” operations to the hip and other areas of the femur, and I graduated to another leg made of a light wood the color of the cabinets in my childhood kitchen. This wooden shell fit over my residual limb and attached with a cloth waist belt that frayed at the edges and rubbed against my hips when I walked, often creating rashes and sores that my mom rubbed with ointment. Secured along the sides, like two metal eyes, were the hinges that swung the leg through to its next-step destination. My dad had hung a rope swing in our garage in Wyoming, and I loved to swing, charging the right leg forward and then watching the bottom half of the left leg move on its own, back and forth, like a door closing shut against the body, a door opening and closing in the strength of a breeze, the leg both a part of me and also separate from me, mindless in a way that inanimate objects are, and yet also possessed of a mind of its own. I accepted this cyborgian body as mine, and at night I tore off the leg and let it rest next to my bed, an off-body talisman that, in the morning, just like in some kind of modern fairy tale, would be reintegrated — although not always easily — into my body. Helpless without it, my body was made active and mobile with the presence and assistance of this human-made device.

As a child, I imagined my body was put together by elves, beavering away in the back rooms of the Denver offices where we traveled for any leg-related activities. Denver was the closest city to oru our small town in rural Wyoming. The drives felt long to me then, the station wagon and then the minivan traversing miles of flat and desolate plains, with a hint of mountains in the distance as approached Colorado. The prosthetist’s rooms were coated in sawdust, dirt, and metal parts. Like a fairy-tale princess, I was blessed (and this part I imagined with glitter) by a small group of people who were dedicated only to the crafting and welfare of my body. Instead of magical dresses and shoes, I was given magical body parts. As a child, I initially took great pride in being distinctive.

The prosthetist’s office in Denver was located on the nondescript corner of a rundown block in a sketchy neighborhood, the floors coated in dust, the rickety side tables in the waiting room littered with old magazines. The traffic moving by on Colfax Avenue was often barely visible through the windows, which hadn’t been cleaned for some time. I liked to rub a hole in the dirt with my sleeve and check for it when I returned; it was never wiped away. As an adult, looking back and thinking of this office — of its waiting room, the back room, and the “walking” runway where we tested the adjustments to the leg — I consider it as a place where objects of shame were manufactured: for the incompletes, the outcasts, the abnormal, the “disabled” as we were then (and still are) called, as if we constituted some beastly barbarian horde. Later, I would think about how those of us in these rooms were part of my strange fairy tale — instead of frogs turned into princes, we were people with misshapen bodies made acceptable (at least in part) to live and move in the world. As a child, however, I did not think of these things, but simply filled that dusty space with my constant chatter and genuine curiosity.

“What kind of leg do you have?” I’d ask the other amputees. In those days, the early 1980s, before the United States entered more wars from which men (and then women) would return in need of reconstructed body parts, the amputees I knew were Vietnam vets. They, too, were disabled, although the circumstances of them becoming so were far different from mine. These men, the war veterans — who seemed to me ancient and slightly edgy, with their smell of cigarette smoke and their sleeve tattoos — would chat to me about which legs they had, their ailments, their various aches and pains. As I thought later when I first heard the phrase, were the definition of the “walking wounded.” In another century or another country or another time, we might have been made beggars or literal outcasts, so we converged here, at this place where body parts were made, to collect the mechanical pieces that would make us mobile and animate and at least partially human.

As much as this early machine mobilized and enabled my life, it often failed me as well. Prosthetists were unaccustomed to constructing limbs for girls, and the height of my leg was often wrong, the fit too tight, the foot too large — made for a man. I was literally mismatched and asymmetrical, the one side slightly withered and incomplete. Slowly, I graduated up through a succession of wooden legs, my feelings of distinctiveness gave way to feelings of shame. The difference I embodied was not a mark of being special; it signaled a freak show. I was a body made in Victor Frankenstein’s workshop. Instead of inhabiting a regular girl’s body that moved freely through the world, I had to be made: a created creature. I was the small girl version of Frankenstein’s monster, weirdly constructed but heartier and stronger than I looked, full of both power and sadness.

Just before I started puberty — during one long, hot day of summer adjustments in the Denver office — I hopped to the back room to have a look at what my prosthetist (we called him a “doctor,” although he had never gone to medical school) was doing with my leg, this precious object. I stood in the doorway in my underwear, leaning against the frame, and watched my leg move back and forth beneath a saw that descended from the ceiling, roaring and raging, spinning angrily and preparing to cut, slice, devour, change. I was part of that galvanized matter that Dr. Frankenstein was endeavoring to create. Flecks of wood flew like sparks and floated through the air, flake-shaped particles, atoms of artificial wood-skin. How strange to be divided from a part of my body, to see it manipulated in the hands of another: treated sawed, handled. I felt queasy and unsettled and out of place, as though I had no place at all, no body at all, no future. What did it mean to have a body that was made by a man with age spots crossing his bald head, with fat hands that adjusted part of me? What was my body? What was its purpose? What was its role? Without this thing being transformed beneath another’s hands, I had no power, no mobility, no chance of being in the world in a way that was significant or, I felt, meaningful.

I reached down and touched the air where the finished prosthesis would go, the place where there was no leg. How could that be, when every other girl I knew so effortlessly embodied a two-legged form? It seemed such a simple thing, just one missing piece from knee to foot, but the absence was everything, even when, in a tactile sense, it was nothing at all.

I stood there for a long time, watching the “doctor” do his work on my body that was also not my body. A cigarette hung from his lips, and bits of bright ash flickered on the table. He cursed at my leg, tugged at it. I ached for the leg. I hated it. I wanted to pluck it from beneath the whirring blades of the saw. I wanted it to be chewed up, incinerated, or disposed of once and for all.

On the way home, I was uncharacteristically quiet. “Are you OK?” my dad asked. “Are you happy with the leg?”

“Sure,” I said, but I couldn’t help thinking that someday I would walk through the doors of the prosthetist’s office with two real legs, as if a real metamorphosis had happened — from monster to princess. Instead of entering Frankenstein’s workshop, I would enter a world where real fairy tales came true: peasants were made queens.

At night I began storing the leg in the closet and shutting the door so I wouldn’t have to look at it or know it was there. I would lie in bed and imagine that a new leg, glorious in flesh and blood, would grow in the empty space beneath the covers. I would awake transformed. Reliance on an artificial leg made my hormonally charged heart spin: to wear the machine, to rely on it so deeply, was to be bound and shackled, but also, oddly free.

“I hate you,” I once said to it, out loud. It was one morning as I was putting the leg on.

My brother walked past my bedroom door. “Who are you talking to?” he asked.

“You,” I said, slamming the door in his face. I did not talk about the leg, and nobody knew how I felt about needing it. I covered it with questionable fashion choices; I tried to put it out of my mind.

In high school, I still prayed to be healed of the problem that required me to use the leg, to be rid of it, although the idea of being parted from it also filled me with a great and terrible dread, like the knowledge of death. It would be like jumping off a building to be seen without it, to be left without it. At slumber parties, I clutched it close in the sleeping bag. At high-school parties, I was careful to hide as much of it as I could, to shroud the difference in long pants or thick tights. I detested it. I relied on it.

As I’ve become an adult, I have cast off one leg after another as my body grew and prosthetic technology advanced. Now, artificial limbs have knees that operate like computers; feet come with intense shock absorbers that allow people to run and leap and participate in competitive sports. I own a running leg, and a leg with an adjustable foot made for wearing high heels. But this relationship I have with a mechanized body has always been contentious, because a women’s body is, in part, her currency in the world, however we might try to deny it. A woman is embodied, and she is judged accordingly. We want to think that we are beyond this, that we are more than our bodies, but in the end, we are not. We are easily reduced to the sum of our parts, and sometimes we are reduced to only our parts. As a woman who wears a permanent machine, I felt and still feel this reduction acutely.

At my high school graduation, dressing in my room with another amputee friend of mind, pirouetting in front of the mirror, I observed that it would just be so much better with two real legs. She agreed. The “it” was the crucial point. We both wanted to be pretty, to have our bodies be acceptable, normal, noticeable — but in a way that felt special, not strange. We carefully calculated the fine line between these two descriptors. We didn’t want to wear flesh-colored hose to match the flesh-colored paint of the artificial legs we wore, which hardly matched our own skin tones. We didn’t want the leg to make loud noises as we walked. We didn’t want to be stared at. We wanted to be women who didn’t rely on any external, human-made parts to make us whole. We wanted to be whole without assistance.

Sex presented a particular dilemma. What to do with the leg? How to explain it? I worked to hide it, believing that the vulnerability of difference wasn’t sexy or special. During those early years of sexual activity, I felt a deep embarrassment coupled with a furious wildness — a feeling that I need to overcompensate, prove that I was worthy, prove that I could be chosen, and that a so-called normal person would pluck me from the freak show, make me belong to a different group of people, the “right” group of people, the beautiful ones.

As a teenager, I became an expert at “partial sex.” I made sure that everything from the top down — face, arms, breasts — were arranged for maximum beauty, a standard based on what I saw in magazines. I was physically fit to the point of obsession, and I became fastidiously committed to virginity, if only because it bought me more time to avoid being vulnerable in a sexual way.

As an adult, my desires changed, but remained terrified to reveal to others the truth of what I looked like and who I was. I didn’t want to experience the moment in Frankenstein when the doctor realizes the horror of what he has created. Not beauty, but ugliness:

How can I describe my emotions at this catastrophe, or how delineate the wretch whom with such infinite pains and care I had endeavoured to form? … The different accidents of life are not so changeable as the feelings of human nature. I had worked hard for nearly two years, for the sole purpose of infusing life into an inanimate body. … I had desired it with an ardour that far exceeded moderations; but now that I had finished, the beauty of the dream vanished, and breathless horror and disgust filled my heart. Unable to endure the aspect of the being I had created, I rushed out of the room.

How could I know that someone would not, as the doctor had done, run away from me, horrified by what had been revealed? Beautiful face, terrible body. The Sphinx. A harpy. A siren. Samuel Taylor Coleridge’s witch-serpent Geraldine. Who could desire such a monster?

But people did, and do. This is, in fact, another great lesson of Frankenstein’s story: that love is given to all different kinds of human forms. That there is no fairy-tale body, no perfection. But I continue to struggle, finding it hard to walk by any magazine that promises “Your Perfect Body” or “Get a Better Butt” without picking it up and studying it, wanting it, hating the fact that I cannot have it.

When I became a mother, my relationship to my body changed yet again. A different kind of somatic naturalness — all mysterious organs and processes — was activated inside me, and everything worked. I made a beautiful boy, Ronan — flawlessly made, it seemed. But at nine months old, he was diagnosed with a terminal illness — a progressive neurological disease — that would claim his life before the age of three.

At first, I irrationally blamed my hybrid body with its “fake” leg. How dare I think I might actually manage to build something perfect in this body helped along by expensive, human-made parts? But as my son’s condition developed, I developed a more nuanced relationship not only with my leg — which seemed an “easy” problem compared to his many ailments — but with other medical-grade machines that also contributed, for a brief time, to his well-being and quality of life. Because Ronan had trouble swallowing and sometimes breathing, he used a suction machine and an oxygen machine. At the end of his life, he used a nose tube that distributed pain medication. Nothing about his body in the world was easy, and suddenly all the mechanical parts of my own brain that worked together to enable me to speak, walk, type, move, shout, eat — all of them — were miraculous. I wasn’t monstrous; difference can’t be so easily easily understood or misunderstood. Everything, everything, everything was wrong with my son, and yet he was gorgeous and singular. He was my creation, but I would never, as Victor Frankenstein had, leave him.

Now, after my son’s death, I think about what a revelation it is to move food to my mouth, to walk across a room — assisted or not — to have vision, mobility, thoughts, and a chance at a life. I understand that the most powerful machine any of us has is the brain, and I’m grateful for mine. I no longer curse the leg on the floor beside me, although it is true that I have occasionally cursed the world. Instead I am grateful for this complex system of interconnected neural pathways — mysterious pathways that remained unlit or burned to the ground in Ronan’s brain, but that function in me in a way that enabled me to care for my son during his illness, and that continue to help me to survive, however uneasily, his death.

My body is, and will always be, partly mechanical. This fact is a burden, a gift, a risk, an attitude, and a reality that can be shifted in ways that I can control and not control. Like all of us who live and breathe and function in these bodies composed of so many disparate parts and processes, so many beauties and lies, so many conundrums and solutions, we are hybrid beings. We are, all of us, subject to the chaos and unpredictability that are creation, reinvention, and change.

We all live in fairy tale called life. And we humans are, all of us, beautiful monsters.


Emily Rapp is the author of Poster Child: A Memoir (2006) and The Still Point of the Turning World (2013), which was a New York Times bestseller. Reprinted from Curlers to Chainsaws: Women and Their Machines (Michigan State University Press, 2016), a new book of collected essays edited by Joyce Dyer, Jennifer Cognard-Black, and Elizabeth Macleod Walls.