A Testimony on Life with Scoliosis: Scoli Girl by Cindy Heidel
Introducing "Back Stories", our TOPS Guest Blog Series. Our first guest blog is this incredible raw and moving story by Cindy Heidel from Florida, USA.
*****
I was born, a stick with a head on it. People loved to point out how skinny I was. By thirteen, I knew I was abnormally tall, flat chested, and had two buck teeth that could open a soda bottle. Some brat in the neighborhood nicknamed me Fang. But I also knew that something was wrong with me. It was the end of summer 1971. In September I would enter 10th grade at Catholic High. I was lying on my stomach, on the floor, watching TV. Mom was stretched out on the vinyl slip covered sofa.
”Lie straight!” she yelled.
“I am lying straight.” I was wearing a skinny ribbed top and hip hugger jeans.
“Lie straight.”
Again, I yelled back, “I am! Leave me alone!”
At 6:30 my dad came home, looking like the hero I imagined him to be, in his Baltimore City Police uniform. Before he could even change clothes my mother said in her agitated voice, ”Look at her back, her ribs, do you see that hump? Something’s wrong with her.”
Like I never heard that before.
“Are you listening to me, Herman?”
“Woman dog!”, my dad replied. Mom hated being called that. Something must really be wrong. Dad joked to ignore her.
A few weeks later, there was a note on the table saying we were going to a doctor at a special hospital. No one spoke much, except to argue, so notes were the main form of communication.
We sat at a red light on the corner of Lombard and Haven. The bar on the corner had their door propped open with a stool. I could see a mural of a naked woman on the wall behind the bar. Right before the light turned green, I saw a topless woman walk across the bar! Mesmerized, my mind was not on the journey ahead of me. I would see that image many times over the next three years.
We finally arrived at Children's Hospital where I was told that I was going to be fitted for a Milwaukee Back Brace. The room was sterile and bright but looked more like a workshop than a hospital. There were some odd-looking tools and fake hands and legs lying around.
“Take off all your clothes except your underpants.” A man in a white coat came up behind me and pulled the harness down, slipped it over my head and around my neck. It reminded me of a noose hanging from a tree, like in the civil rights movement down south.
“Stand up on your tip toes, then we’ll tighten the pulley as much as we can,” he said. The tears started to pour from my eyes. I was overwhelmed with fear. I had stopped breathing. I felt the rig pulling me upward, tighter and tighter. My lips were quivering. I started sobbing, trying to catch my breathe. They swiftly wrapped my torso in wet plaster bandages from my chest down to my crotch. They said it would harden fast. FAST? What was fast? Five minutes? An hour? An Eternity.
I don’t know how much time passed, but when they turned on the electric saw, if the noose wasn't still around my neck, I would've surely fallen to the floor. I shut my eyes, tears streaming onto the dry white plaster. The noise was deafening. I was sure they were gonna saw me in half or at least make me bleed. The image of a magician sawing his assistant in half came to mind. Maybe I would just disappear. The hard plaster torso hit the floor.
We drove back across town the same way we came, in silence. No one said a word about what had just happened. We stopped at the same traffic light.
“They should keep that door closed,” my mom said.
“I hope not. Something to look forward to,” I mumbled.
Thank god I attended an all girls school. Little did I know just how grateful I would be for this, when school started and I was trapped in this monstrosity of a brace twenty three hours a day for the next three years.
It was called scoliosis. They gave my parents a choice between putting me in the back brace or surgery to screw two 17” long rods into my spine with various screws, cages and hooks, and six months in a body cast, lying in bed. They chose the brace. Yay, public humiliation! And so began my confinement in a full torso, metal and fiberglass brace that extended from the top of my neck to the bottom of my pelvis. It looked like a torture device from medieval times. Once a month we would go get it adjusted. Dad would walk me through the burn unit.
“See how good you got it?” as we passed bed after bed of disfigured kids. Always looking at the bright side of things, my dad.
“Humph,” I grunted.
I hated taking two city buses to school every day. It was bad enough that we had to wear knee-hi’s and skirts in sub zero temperatures. To freeze the goods, no doubt! But standing at the same bus stop as public school kids was hell. Wearing the back brace, braces on my teeth, and wire framed glasses, I looked like the poster child for Bethlehem Steel. I was a freak. I would sit on the bus staring at fashion magazines. Why were the models so beautiful? There was something behind their eyes that I didn’t see when I looked into a mirror. So I sat, erasing the fashion model’s eyes until they were just white orbs of nothingness.
I made two new friends that year, alcohol and drugs. I was self-conscious and just wanted to disappear. My other new friends were the stoners and the future lesbians. If not for them, I would not have survived high school. The brace retarded me socially and warped me emotionally.
I remember very little about those years of imprisonment, mostly crying myself to sleep and some occasions of escape. Whenever I stayed over at Gina’s or Mary’s house we would hide the brace under the bed, wrap a thousand scarves around my neck and run off to an Alice Cooper concert or something. Smoking flakes, driving to dances at UAW hall in Dundalk, all of us holding onto the steering wheel because we were so high. They treated me like one of them. Gina used to call my brace Screw.
“What would Screw like to do tonight?” she’d say.
“Screw would like to get high,” I’d respond. We would drive around drinking and yelling out the window at girls.
”She’s gay, she likes you,” then ducking, so no one saw us. Trying to escape. And trying to find myself. I was getting into more and more trouble at school. There was the life size statue of Saint Francis. I put a cigarette in his fingers. The cleaning lady ratted on me. I got a bunch of us to boycott the cafeteria. Holding hands blocking the door singing, “We Shall Overcome”, because the nuns refused to give me my money back for a bag of chips with ‘pizzy' ants in it. I liked hearing my name over the loud speaker.
“Would Cindy Heidel please come to the disciplinarians office?”
I was still forced to attend mass on Sundays.
“May I please sit in the crying room?” I’d ask the usher.
“No, that’s only for the babies who cry during mass.”
“But sir, I can’t lean back, it pinches my bottom.”
“No.”
That was the end of God in my life. From that Sunday on, 7-Eleven became my place of worship and my offering got me a coke flavored Slurpee.
In senior year, they started to ween me out of the brace. I wore it one hour less each day. By senior prom, I was only sleeping in it. Somehow, I got a guy to go to prom. His name was Chester. He had acne and coke bottle glasses. I had to fill in the tuxedo rental form for him. He was either blind or brain dead from smoking so much PCP. The end was near.
Looking back, I find it odd that my family never talked with me about it. How did you sleep? My body was in a cage. Are you OK? No one ever asked. My grades were poor, and I partied a lot. It was as if nothing was wrong. Just ignore it and it will go away.
We all did the best we could back then. I learned how to make fun of everything. Thanks dad! No matter how scary things seemed at first, my sense of humor got me through it.
Two surgeries later with two broken 17” rods, 26 screws, three cages and two hooks, my mind has finally accepted my body. I still have the brace. It’s hanging on my bedroom wall. Today it’s a lamp with a 25 watt bulb in it. It’s retired, to its true purpose, to illuminate.
Stay tuned for more Back Stories: TOPS Guest Blog Series.