This was my introduction to 1989. I was three and about to be made famous by these two men with steady hands.
I was embarking on an adventure—an experimental procedure called a dorsal rhizotomy, where groupings of spinal nerve roots are cut to reduce the effects of interference, or the reduction of contradictory messages to and from the brain which contributed to my spasticity. Due to having cerebral palsy, literally meaning, “paralysis of the brain,” my body was in constant mutiny against me. The messages sent to and from my brain misfired. The dorsal rhizotomy was an attempt to restore order.
It worked for a little while. I became ambidextrous. My range of motion improved because my brain wasn’t the party line that it had been before the surgery. My balance was more centered. My body could finally relax.
After frolicking in strawberry fields, my parents told me I was famous. I had made it into the medical books after being one of the first in Georgia to have the surgery. Other than the staples in my back and a scar that spanned the whole of it, I was received like a queen. Sushi from August Moon during exercises. A whole troop of new friends: Felix the Cat, the multicolored Turkey with the warbler who said, “Gobble, Gobble!” when I squeezed him, Ballerina Bear in her pink lace tutu with pink roses on it, P.J. Sparkles who, as her name implied, sparkled in her pink pajamas when you squeezed her, and finally, Schmutzy, I suppose because of his dirty brown, scraggly fur and Rocky Raccoon, named in honor of my favorite ice cream flavor, Rocky Road. There were gummy bears and cards and chocolate, and I had a special bed that moved up and down.
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Surgery #2 involved pink. A body cast. A metal plate with screws. And six weeks out of school. My left hip bone came out of its socket. They broke my femur. I was the only one I knew who had her bones professionally broken. I was nine.
I reacted differently to this procedure. We went to Florida for winter break, and on the way there, we stopped at a restaurant for a pit-stop. Sitting on the toilet made me cry, not from peeing, but simply sitting. The pressure on my hip was too much. It was stiff and heavy, with a structure not made of bone.
There was something else, too: I began to realize that the seemingly lifetime supply of gummy worms and stuffed animals, even the expensive ones you could draw on, or the ones that lit up, didn’t keep me from concentrating on the newness of something else: the scars. There was more than one by this point, spanning the entirety of whatever body part they were splayed upon, purple and rubbery like raw chicken livers. And my body hacked into pieces and sewn up again in line segments. Not even lines, but segments, disconnected, no longer intact. I played Connect-the-Dots with myself regularly. Who I used to be only became clear when I reached the last knot of purply-black flesh.
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Surgery #3: Exactly like #2, but six years later, and with a couple of additions. This time there was no cast, and my six-foot-five Mormon surgeon decided to slice my abductor and adductor. My abductor was the most fun to recover from. He sliced on my right side, my hamstring for better range of motion, so the fifteen year old could better spread her legs. An unsteady diagonal appeared, scribbled inches from my groin. Like #2, despite the increased range of motion, I still couldn’t sit Indian-style. My hopes were dashed, hoping to add to my repertoire of positions—one I lost at nine, especially since the Doc told me I’d be able to.
Something odd happened, and I’m sure it was because of the groin gash. It was closest to the affected part. I’m convinced that the groin gash actually caused my crotch to be bruised: my vagina was the color of healthy looking excrement after I awoke from surgery.
At fifteen, I was still getting my period under control, especially since having CP makes it more difficult to handle. “Mom,” I said, walking around Kroger in one of the old-people walkers with only two wheels. “Yeah.” “I haven’t had my period since before the surgery, and that was over a month ago.”
“Do you think you’re pregnant?” She looked at me, brows furrowed. Her voice was raised. I actually considered the question, not realizing that she was being sarcastic. This had never happened before, how was I to know that being pregnant wasn’t the only way to miss a period? I didn’t have my period for three months: the body experiences blows and then prohibits itself from feeling anymore unpleasantness. Surgery: birth control, au naturel.
My adductor procedure still mystifies me somewhat because it’s in this neutral category. I never thought there was anything wrong with the range of motion in my ankle until later. My medical Mormon cut vertically down the left ankle. I know that the muscle was tight, but how loose does it actually need to be to move up, down, and side-to-side? I do know that my mom told me I had to rub it out—to lather the leathery segment—with vitamin E oil, Q-tip in hand, like I was brushing barbecue sauce onto a chicken.
I did her one better. I held my ankle with my right hand, the left index finger pre-dipped with the oil the color of concentrated urine, and with the back of my nail was careful not to touch the skin with ridges in it, now Frito Lay-esque. Using the back of my nail was intentional. It was the least sensitive part of my finger, tactilely unaware.
What my fingers don’t know, I do. My half-ass lube jobs didn’t do any good. When I touch that scar, just like I touched it then, I have the same reaction: hurt. The scar tissue beneath the incision congealed. It hardened. The rub-downs were meant to deter that—to stop the sticking—to break up the inelastic linear crust that was my scar, mushroom-colored in all of its glory. It became the straightest bruise I have ever had. The permanent black and blue of error, tender to the touch.
Surgery #4 was the deep breath before the jump. I was sixteen. It was a year after surgery #3, and my body was in no mood to be cut deli-style thin again. There was a new man with happy hands, who was not my six-foot-five surgeon with a smile. The Mormon who molded went off to Utah to become a park ranger. This surgeon was about five-foot-eight and lectured me on being responsible. Balanced. I am unequivocally, undeniably unbalanced. Balance was something I never had, so why did he, of all people—someone who knew that a lack of balance came with CP’s vast, wondrous territory due to the location of the bleed in the brain—expect it now? It was a moot point that with him was not. My disproportionate being was a perpetual disappointment to him, seemingly more important to him than my actual disability. I don’t remember the music. There was no talk of becoming famous.
Dr. Balance reopened my left femur scar to remove the metal plate there as one would remove hardware from a computer. Ever since the left plate was put in to keep my left femur in its socket, I buzzed. From nine on, I tingled and burned, having become a perfect conductor of electricity. Electricity was attracted to my scars like a magnet, streaming along the fleshy cords like TV in HiDef.
Post-op was grand. I vomited Exorcist-style on the nurse. She smiled. I was becoming more and more sensitive to the anesthesia. It left me with a heaviness particular to a migraine. I cried for the AC to be turned up and for my gown to be taken off. My gown wasn’t removed. My headache remained, but I felt a little lighter. Orifices are blessings. They get the bad out.
They sewed me up and shipped me off. The new scar went a little beyond the old scar. I wondered why. They should have been able to cut in between the lines. The scar was covered with sticky tape, exposing the brown of brand new blood before it has become ripe with air. I welcomed recovery.
The stitches in the scar were self-dissolving, but about a week later there were a few stitches that still hadn’t dissolved. Mom took out the pliers and played nurse. I was wearing the blue nylon shorts that dried quickly and sitting on the green suede couch. She pulled my pants down and saw it. My shorts were stained with a brown yellowish discharge, the color of scab before it hardens.
“What is that?” Mom asked. “Stand up!”
Since the bones hadn’t fused yet, standing took longer than usual, and by the time I got to my feet, the pre-scab had gotten on the couch.
“Kelley, it’s on the couch! Robert, what is that?” My father peered at the scar. “She’s leaking.”
Excellent. Cutting outside the lines, an exorcism, and now something entirely new: I had sprung a leak.
We went to my surgeon’s office, but not before sushi at Sakana-Ya. When I was finally seen, the on-call doctor who attended to me said it wasn’t pus like we thought. She said it was drainage—that I was draining. My body was expelling what it needed to better heal itself—extraneous material. She squeezed my scar like a Ziploc bag, the juice seething to the very end of the fleshy zipper, a knot at the end of the scar. She zipped me up. “I’m sorry this happened,” she said. So was I. This was a delayed reaction. I didn’t want to think about the fact that if my body was responding so oddly to a plate removal, in what other ways I was being affected.
###
Surgery #5 was also a plate removal on the right hip. It was supposed to be a relatively simple procedure, just like the last one. Reopened, removed, prefix-infused, but my body knew better. The older, the wiser, and that, it was. This surgery ushered in a new era: I had the power. No longer a minor, I was now the one signing consent forms. With the power came awareness. I had been conditioned to be expectant, I was expected to undergo surgery.
“Could I please have something to keep from throwing up after surgery?” I asked the nurse. “The anesthesia makes me nauseous.” The wait before entering the operating room was intolerable, in spite of her adhesive strip grin and pink scrubs with bunnies on them.
“Kelley, honey,” she said while looking my chart over, “you’ve been through this before.” I hadn’t yet introduced myself to her.
I finally convinced her to give me the anti-nausea medicine. It was really my mother’s request. She was tired of me throwing up repeatedly after surgery, missing the trash can from the convulsing brought on by my spasticity. It turns out I had some more important technical difficulties to deal with other than vomit.
The first words I spoke, while still very much under the anesthesia’s spell were, “I can’t pee! I have to go to the bathroom! I can’t pee!” I was screaming. It came out like a whine. Everything said when under sedatives comes out as a whine. The only thing that signals to others that what you are saying is not intended to be a whine is the pitch at which you say it. My whine was a shrill one. If others don’t catch this, though, you’re out of luck.
They fixed my malfunctioning bladder. Sleep was but a distant memory by the time I saw it: a catheter to be inserted into my vagina. Mom wasn’t there: it was early morning, and Dad had stayed overnight because her back was hurting from sleeping on the hard couch in my room. The catheter was translucent, plastic, and angular.
He saw it, and headed for the door. “Please, Daddy! Please, stay!” My scream could be a scream now. I held his hand with the grip of death. A grip acquired after years and years of using my hands to move. I held things sure of their surety. My worldview didn’t grant me the relief of believing that people were inherently good, but I had come to learn that things, objects, were presumed stable. I refused to have my own father refute this logic.
He didn’t listen. He let go of my hand, opened the door, and stepped out of the room, right outside. I saw him through the glass. I banged on it, and refused to let the nurse proceed. I wailed, and my teeth chattered without stopping. “Dad, please! Come back in! Come back in!” I continued screaming, knowing that whatever amount of pain was typical that my experience would bypass it, surpass it. I am spastic. My muscles would automatically and immediately attempt to reject the foreign object. I would move in spite of my grip of death. I think my father realized that successive traumas require a buffer. Perhaps he also remembered that Mom wouldn’t have left me. As I screamed for him through the glass, I realized some things, too: it isn’t that people aren’t inherently good. It’s that anything inherent isn’t inherent at all. It’s a misnomer—inherent is like everything else, arrived at by process, but simply devoid of kinks—a theory finally proven to be sound. It must have been extremely uncomfortable for him having to watch something being slid into the genitals of his fertile, post-pubescent nineteen year old daughter.
I was surprised by what an ironic contraption the catheter was. As much as it hurt going in, causing my vagina to swell like a fig and become so blue that it turned violet, once it was in, it was like the claim made by the tampon companies: so comfortable you couldn’t even feel it. It was so comfortable that my bladder had to be retrained. There were three false alarms before I urinated on my own. They let me out of the hospital when I could relieve myself normally.
That evening I vomited multiple times. The sheets had to be changed. Mom yelled. She obviously had more faith in medicine than I did.
###
The latest surgery, #6, was minor in comparison. In January 2008, they straightened my toes. They had always been curled from the spasticity. Always became too painful. I jerked long after my shoes were off, and my feet were out of the plastic orthotics I wore. I jerked after I had stopped wearing my orthotics altogether. I jerked sitting with toes in the air. I even jerked after I manually straightened them.
I was twenty-two, and this was my sixth surgery, which came at the worst possible time. I was miserable being back at home. I didn’t go anywhere unless it was scheduled. I was hoarding granola bars, plastic cutlery, and canned chicken and fish in my room because every time I went downstairs, there was a fight. My father called me Chairman Mao-Che Guevara while asking if I was happy. He told me Jesus loved me. I taped it on an audio cassette and made copies. We’re Jewish. We don’t believe in Jesus, and even if we did, at that point, I didn’t think Jesus loved me very much at all. Dad spit paper balls at me through a black plastic pipe, and succeeded in breaking the lock on my door. I still don’t have one on the door to my bedroom. He threatened to break my toes. How ironic. I hid under the bed and peed on the floor. A day later, I called my friend to come get me. Before I left, Mom asked me if anything was wrong. What could be wrong? After all, according to my father, Jesus loved me.
My parents were almost entirely uninvolved in this one. They said I needed to handle everything myself. I had scheduled the surgery date, was briefed on post-op care. Recovery in this instance was also six weeks, separated into three weeks with a cast which was blue, and three weeks without one.
My friend Katie, who is a nurse, took me to the hospital the date of the surgery. Somehow, my parents figured out the date of the surgery, and showed up paces behind us, smiles on. If this is what being supportive meant, count me out.
Three years earlier it was anti-nausea medicine that I had asked for. This time it was anti-anxiety medicine, and the request was entirely mine. I asked my team of surgeons not to kill me on the operating table. Just like that. They didn’t understand why I would ask such a thing as many times as I had gone through this. Interestingly enough, the one time that I asked not to be killed, they almost did the opposite.
Straightening my toes caused me to stop breathing. My surgical team had to bag me because I wasn’t breathing on my own. Katie told me. She was upset when I said half-awake that I didn’t want to go home with my parents. I told her in my sleep, and she was yelling when I awoke.
My parents refused to help with post-op care. The aide I was supposed have didn’t come until two weeks later. I broke my cast trying to shower myself and another one had to be put on. Mom and Dad’s Doomsday smiles didn’t mean anything. They were accessories to the roles my parents played.
Later, Mom suggested that the two casts be turned into bookends. They’re still sitting in my closet.
DEDICATION
For Katie,
for being such a good friend,
back then and now.
Kelley A Pasmanick is a twenty-nine year old woman with cerebral palsy, living in Atlanta, Georgia. She holds a Bachelor of Arts in English from the University of Denver, having graduated in 2007. She also holds a Master of Fine Arts in Creative Writing from Georgia College & State University, having graduated in 2011. Pasmanick’s story, “Capped” has been published in the June 2015 issue of Wordgathering.
