The Body I Bargained Away
The first time I realized my surgery had failed was when my foot was dragging across the floor. My leg was going forward, but my foot wanted to stay behind. I stood in the hallway, gripping onto my walker for life, trying not to fall. My left leg felt numb, unresponsive, like it didn’t belong to me anymore. My foot slid against the floor with a dull, humiliating drag.
I had thought this surgery was going to fix my body to become more acceptable, but it broke my identity.
This surgery was my plan to improve my body in a way that made my disability less noticeable. For me, this would be a total reinvention after being in extreme pain, and feeling different about the way I walked my entire life.
The doctors had been pushing this surgery since I was fourteen, and they diagnosed me with Charcot Marie Tooth disease. They call CMT the most common rare disease in the world, yet it’s a mystery to most doctors. Because it is under researched, many will never be able to name their pain. If my surgeon had more information on Charcot Marie Tooth, I would not have bargained my body away.
The surgeon would reorient my hip socket so it better covered the ball of my femur. Having only 25% of my socket, my joints were grinding on each other. I was hopeful this would fix the extreme stabbing pain in my left hip.
I was informed the surgery would be three hours. I woke up eight hours later, disoriented and numb. The first thing I heard was that there were complications. Once they repositioned my hip, they realized my femur was severely twisted, a common issue with my condition. Once the surgery was completed and everything was pinned, my leg was sticking out to the side 90 degrees. The doctor had to detach it, reposition, and reattach my leg.
I remember the words “saw” and “detach.” I was panicking while trying to process what happened while I was unconscious. Chills went through me as I pictured what my leg looked like sticking out 90 degrees. I thought about what it looked like to have my leg removed, and that image made me hold my breath and try not to gag.
There was a pit of dread in my stomach that feared what truly happened while I was unconscious. I thought about my dad’s and mom’s reaction when the doctors informed them of the thigh twisting while I was under operation. How helpless they must have felt. I felt guilty for putting them through this. Maybe this was part of the process, I hoped. I held onto strength and kept an optimistic attitude for a full recovery.
I stayed in the hospital for three days. The first time I tried to leave the bed, it took three people to help me into my wheelchair. It took us ten minutes to move me, until I finally gained the mental strength to push through it. The pain of moving my surgical leg after being sedentary was blinding. I thought my leg was going to collapse. My dad drove me home, and I cried on the way there. I felt every turn we made in my body. I was trapped in a position I couldn’t adjust.
They told me I would be walking in three months. At three months, I was still using a wheelchair.
My mom stayed home the first six weeks to take care of me. She brought me food, helped me walk to the bathroom, handed me my medication. I had a stack of books on my bed to shuffle through every day, trying to find a new world where my body wasn’t in a cage.
But immediately, the medical failure was obvious. My foot dragged every step. My heel pulled tight, my ankle was weak and unstable. When I used a walker, I couldn’t move my leg forward without help. My mom would help me scoot my foot forward every step I took.
The dread I felt then brought back a memory of my final meeting before the surgery. The last meeting out of many, after I had already been warned about the complications, on the way out the door, my doctor said, “And the surgery might make your foot drop permanent, but probably not.” She smiled, waved the air and shook her head, physically waving it off as no big deal. She made it seem unlikely, like it was nothing to worry about.
I returned to the hospital to get a cast on my foot to keep my foot from tightening up even more. Even though I was doing stretches and physical therapy, it just wasn’t working. I followed every instruction.
By November, I went back to work at an after-school care program for YMCA, still in a wheelchair. My grandfather drove me and helped me in and out of the car. At work, I practiced walking short distances with my walker down the halls. I was trying to convince my body to remember something it no longer knew how to do.
But everything was different. I was walking uneven, disconnected from my body. I was learning to live in a body that had been rearranged without my consent. My left leg was weaker, shorter, and numb. The alignment had shifted my body so drastically that all the pain I once felt on that side had transferred over to my right. My custom brace for my foot drop no longer fits.
A year after the surgery, I went back to my doctor hoping for answers or some kind of plan.
“So the surgery had not produced the results we expected, and you would have been better off not getting it.” She was very matter of fact, treating me like a statistic in the medical system. I sat there in silence, trying to process the weight of that sentence. I was so shocked, it was right then I finally realized, this was it. My body was frozen still. The room was silent. Then she suggested another surgery for my foot drop. A tendon transplant that would leave my foot flexed forever. It was an option I had to seriously consider. Before we left, almost as an afterthought, she asked,
“When did you want to schedule a procedure to remove that plate in your hip?” Taking out the plate in my hip was something she had never mentioned before, even after our three surgery follow-up visits. If we hadn’t scheduled this appointment on our own, we would never have known I needed to have the plate removed. I felt like I was fighting a battle without a sword. I had been defeated, not just by the outcome but by the entire process. To this day, the plate remains in my hip and I refuse to be operated on.
I remember the empty feeling of giving up when I used duct tape as a makeshift ankle brace. It was the moment when I realized I had no other options.
I would snip a foot long piece of tape, anchoring it from the back of my ankle to under the pads of my toes in a jagged criss cross pattern. I would layer the tape back and forth a few times, then attach more pieces of tape around both ends to secure it. It was the only ankle support that fit my shoes. It crunched and swished when I walked. I still had visible foot drop with the duct tape brace, but it was better than nothing.
Every night, the scissors pressed a chill into my skin. The tape was so snug and tight I had to pry the edges up with my fingernail and peel it gently off my skin. My skin turned red as I pulled off the tape. It left me raw and angry.
I lived in a cycle of waking and sleeping regret. I traded the body I knew how to navigate imperfectly, for something even harder to live in. I thought about the life I had before, walking across campus, feeling desirable, and blending in just enough. Now everything was visible. My limp was worse and my limitations were absolute. I couldn’t pretend anymore.
But slowly something began to shift. I accepted that I was recovering, and that recovery is an everyday thing. I stopped trying to force my old life back. I started to listen to my pain instead of shutting it out. My life is different now, but still I continued to try and create something new for myself with my circumstances. I enrolled in community college and I started to use a cane, something I resisted for years because I didn’t want to look disabled.
I stopped feeling shame around my cane when I decided I was going to use it to mythologize myself into a new character. I got the idea to play on the mystery and whimsy of a woman with a cane. Someone who was unique, powerful, and memorable. I’d wear corsets, hats, and funky prints and take myself out for coffee every day to practice a new identity.
I used to think expressing my fashion sense would call too much attention to myself. I turned that fear into expressing my inner beauty by wearing it on the outside. Trying on different looks gave me different feelings. A big black hat made me feel mysterious and elegant. A bold red lip made me feel like I had a way to show my inner courageousness on the outside.
I began to ask myself about the kind of life I could build now with a new body. If I couldn’t move through the world the way I wanted to, maybe I could create something that didn’t require me to. I engaged deeply with this question and for the first time in my life I had potential in my hands. I imagined myself surrounded by new, healthy friendships with unique and creative people. If I had my own business, no one could make me stand when I couldn’t.
I began to start a candle business and found a small creative community in my town. I set up a booth at a local art fair, and, for the first time in my life, I had a real purpose. The surgery didn’t make me less visible. It made it impossible to hide. And in that visibility I was forced to confront something I had spent my whole life avoiding. I didn’t need to be “fixed’ to be worthy of a full life.
I got this surgery hoping for a reinvention, and in a cruel, beautiful way, that is exactly what was delivered. I am still living in the body I bargained away. I am still learning what, exactly, I am receiving in return.
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About the Author
Rachel Daigle is a writer exploring disability, identity, and the body through creative nonfiction. Her work examines the psychological and emotional terrain of living with Charcot Marie Tooth disease, particularly the ways medical intervention can reshape one’s sense of self. She is interested in narratives that resist resolution and instead linger in complexity, loss, and transformation.