Cerebral Palsy · Sisters

Operation

Operation – 1966

I used tiny tweezers to remove the sick man’s spare ribs.  The procedure ran smoothly until Kelly leaned over my shoulder and nudged me. “Brizzit!” sounded and the patient’s red nose lit up.  

“My turn,” said Gayle, so Kelly leaned back and looked down at her folded legs. I had no desire to scold Kelly because tomorrow was my for real operation.

Momma and I would drive to a Baton Rouge hospital where doctors would perform corrective surgery on my skinny left arm. This time they planned to give me supination – the ability to make my wrist muscles move and allow me to turn my left hand over and face palm up. This would be the third operation on my crippled hand.  The first surgery put a straight pin in my left thumb at the second knuckle to give me better fine motor control.  The second took three incisions and gave me the power to bend my wrist up and down.  Before then my stupid left hand stayed bent and locked downwards. 

The doctors predicted the supination surgery had a 64% success rate.  I felt nervous. The worst part of surgery was throwing up after the operations; however, Momma would be there to wipe my mouth and face with a cold rag and hold back my hair while I vomited in a metal container.  The pas bon feeling lasted less than two hours, and then I ate popsicles, opened presents, and read get well cards. My left arm would be in a plaster cast for weeks, but I was used to keeping my left arm in a supporting role.  The big difference with this operation was I would miss a week of school.

Sister B. had embarrassed me in front of my fifth grade class on Friday.  Right before we lined up for mass Sister said, “All of you need to pray for Ginger today.  She is having surgery on Monday to fix her crippled arm. We want God and the Blessed Virgin to watch over her.”  I had stared at carvings on my wooden desk and allowed myself two quick blinks before I realized a third blink would leave wet drops on my desk’s “Scools dum” proclamation.

“You’re lucky to miss so much school,” a friend told me at recess, and a popular girl who rarely noticed me, said,”You scared about them cutting up your arm?”

“I don’t wake up until it’s over,” I said. 

“Does it still hurt?” she said as her index finger touched the wrist scar where you could count the six stitches from my second surgery.

“Nah,” I said and followed my friend towards the playground.

At home in our living room I now watched Gayle remove the Adam’s Apple, funny bone, and wish bone from the electrically-charged Operation patient on the floor between us. 

“My turn!” said Kelly. 

“Wait!” said Gayle as she focused on removing the Broken Heart. 

“No! No!” said Kelly as her sister’s tweezer made the game go “Brizzit!” Kelly readied herself to win the game, so I left my sisters without a word. I went to my room to read away my consternation. 

Pippi Longstocking

When I began reading chapter books at age ten, I looked forward to being alone – on my bed against my flowered bed rest. Books about talking animals, strange gardens, or brave kids took me to cool places like movies did.  I enjoyed conflicts that sent characters in crazy directions before returning them to clever, satisfying resolutions. This afternoon I had Pippi Longstocking to laugh with and admire. However, I read only four pages before Kelly burst into my room with Gayle in hot pursuit. Kelly locked the door just before Gayle pounded the wood with her palms and moved the door knob back and forth. 

“You chicken cheat! Open up!” yelled Gayle.

Kelly stared at me with her dark eyes, gave me a small smile, and then backed against the door like the peyank she was.

“Come on, Ginger! She cheated!” said Gayle through the door as she pounded. 

“Quiet it down! Don’t y’all make me get up!” said Dad from his bedroom across the hall. We knew better than to rouse a napping Dad, so Gayle had two choices: to tattle to Momma or to find other amusement.

After Gayle gave up, Kelly jumped on the bed a few times and claimed the pillow to my right. “Pippi is my favorite,” she said, waiting for me to read aloud. 

“She and Mr. Nilsson headed to the South Seas to find her sea captain father,” I explained. 

“Show me the pictures,” said Kelly who flipped the pages backwards.  I read with different voices and appropriate animation for over two chapters before I felt Kelly’s head fall slack on my shoulder. Kelly settled in and opened her left fist to release a tiny plastic heart.

I touched the scar between my own elbow and wrist. I heard Momma vacuuming the big living room and the back and forth appliance sounds took on a zydeco…zydeco…zydeco rhythm.

I adjusted a tan tunic as I followed the odd old man walking quickly through the stone streets of ancient Rome. The large sweaty man wore a tomato-colored toga and talked fast on his way to meet someone important.  His round face smiled like a snake or frowned like an ogre. He stopped by a group of men around a small wooden table and pulled out a container of dice. “Who feels lucky?” he said. I leaned in to watch because I needed as much luck as I could find. Tomato Red shook out two dice that equaled seven and the men watching him groaned; Red shook and released the dice again.  He rolled another seven and got more complaints.  Then a short curly haired man twitching with anxiety came up and glared at Red who grabbed some coins and his dice.  Curly turned and stormed off with Red with me close behind. The men huddled together and exchanged hurried, urgent words. I believed these two knew where I could find mule sweat. I needed this potent ingredient for tomorrow’s ceremony. I would become an elegant princess if I drank the soothsayer’s  prescribed potion.   A short, sad faced man wearing a purple hat and tunic approached me from behind, “Excuse me, but are you my long lost daughter?”  Before I could answer, Red and Curly showed up and led us all to a comedy parade.  Red burst into song and people in the street danced:  “Something appealing/ Something appalling/ Something for everyone – a comedy tonight!” Folks with bongos beat out the rythmn of the song.

opening scene in A Funny Thing Happened on the Way to the Forum

Pad. Pound. Pad. Pound. “Ginger, come on,” said Gayle in a low voice.  “Let me in. Please, please.”   And she continued the soft door pads.  I left the bed, careful not to wake my youngest sister, and let in the middle sister.  “I got nothin’ to do,” said Gayle. She sat on the edge of the bed and pulled out a deck of cards.  She divided the cards into two stacks. “Wanna play?”  

I sat next to her.  “Just don’t wake Kelly.” 

Gayle made the stacks equal and we began a game of battle. I let the face cards and numbers distract me until I amassed a much larger pile than Gayle’s.  I relaxed inside and believed this lucky streak could follow me all the way to Baton Rouge General Hospital tomorrow.

Birthday party from 1966. Kelly & Gayle in center. I’m behind them.
Cerebral Palsy

Truth Hurts

 1964 -Truth Hurts  (West Side Story)

Going to the camp on Good Friday epitomized “Lassiez les bon temps rouler!” for me.  A  pre-Easter family reunion meant cousins running all around Grandma Keller’s camp, fresh fried catfish, a softball game in the afternoon, and Stations of the Cross led by Monsignor Jeanmard in the morning, plus the main attraction: about 200 pounds of hot boiled crawfish! The relatives all fought for good standing room when fresh batches were poured over newspaper-covered tables.

Grandma closed the picture show to celebrate with her large family on this special holiday.  I wondered why Catholic considered eating seafood on Fridays a penance. Were not shrimp, crab, and crawfish three of the best delicacies on earth?  On this Good Friday in 1964, I did not consider the rationale or rules of being a Catholic. Everyone I loved went to mass every Sunday and various holy days of obligation, accepted the necessity of confession, prayed to the Virgin Mary, gave up something they liked during Lent, and went without beef, pork, or chicken on Fridays. And thank you, Jesus, they had crawfish boils on Good Friday!

About 6:30 p.m. I was in the car with Momma, Gayle, and Kelly driving back home. Kelly was fast asleep on the backseat next to me, and Gayle sat in the front seat, as usual. Dad was driving back later with Claude Emile since the males helped clean up all the outdoor cooking mess.  

I stared out the back window and Gayle bounced a bit on the front seat.  “She’ll be coming around the mountain, when she comes,” she sang, and Momma half-heartedly joined in.  I mouthed the words as if the lyrics were a secret.  

The day had been 82% favorable.  The softball game made insecurity settle in my eight- year-old heart. When the team captains were choosing kids, I heard a third cousin tell a first cousin, “Don’t pick the crippled one.” 

I was used to being last picked at school, but some of my cousins did not know I ran fast despite my weak left side.  These kids had known me all my life, and I usually felt at ease with them. Plus, the camp was my favorite place to be. 

A few minutes earlier Gina, my closest cousin, had pulled me by my right arm over to the crowd of cousins waiting to be picked.  The tallest leader picked Gina early on since she and her eight siblings were known for their athletic skills.  

The third cousin’s comment made me hold my stupid left arm behind my back. After several minutes of tense team choosing, I stepped to the side of the other two unpicked kids: a nose-picker and a crew cut cousin who had just then decided to join the game.  Third Cousin picked the crew cut latecomer, and one of my popular first cousins chose the nose picker.

I  walked head down to third cousin’s side and hid behind the tallest cousins.  First cousin’s team was first at bat, and cousin Chickie began arranging the batters from youngest to oldest. Gina took my good hand and led me out toward third base. My team’s captain was the third baseman, and Gina walked past him and pointed to a distant pine tree, “You go play left field for us,” she said and gave me a pat on the back and a soft shoulder nudge.  

I kicked pine cones and  needles on my way to where the ball never went. I could barely make out my little sister Gayle getting ready to bat at home plate. Overhead, a woodpecker did what it does and the lonesome sound of a fiddler playing mixed with the bird’s taps in a zydeco…zydeco…zydeco way.

I walked down a city street toward a fence-enclosed playground. I wore new navy jeans and a cool red jacket. As I walked, I snapped the fingers of my left hand. My feet kept the beat of a song in the background.  My short black hair was slicked back to stay in place.  Two boys with similar hair joined me on the street and picked up the rhythm of my snaps and steps. In unison V  the Sharks and I kicked, twirled, and jumped to the band’s expectant music.  My left leg extended high at hip level and I spun like a ballet performer while my crew and I approached a basketball court. Some kids shot baskets, but the guy with the ball froze when my crew came close. The Shark on my right grabbed the ball and passed it to me. I completed a perfect pirouette and made a basket!  The Sharks continued their snapping, side kicks, and twirls towards an alley.  

“Look out!” said the guy to my left.

I saw the softball fly over two cousins’ heads and head straight towards me. I held out my ungloved right hand but closed my eyes.  The ball plopped a yard to my right. 

“Get it! Throw it!” yelled voices.  I picked it up and aimed it at jumping Gina, but it landed a few feet from where I stood as the batter headed to third base. I felt every player stare at me and I silently cursed my stupid left arm.  

Gina ran to get the ball and threw it towards home plate. I went back to my position and took a knee to pretend to tie my shoe.  

Three hours later driving home, I relived my dismal first and last time to join the Good  Friday softball game. At bat I struck out both times I was up, and another ball never came close to my outfield area.  “I will never ever in a  hundred million years play that game,” I promised myself.

“Your turn,” said Gayle. “Pick a song.”  My usual optimism brought me back to our car ride home. At least singing didn’t require two good hands, so I choose my favorite song: “You Are My Sunshine.” Gayle and Momma joined me for what I believed was a rousing rendition.

The crawfish boil had disappointed my momma in different ways than it did me. Kelly did not keep still for a second, and Momma had time for maybe five crawfish for herself after peeling several for her youngest daughter and having to help the other mothers with organizing the dessert table. Dad stood around with other crawfish boilers and laughed and talked sports. Momma could hear him entertaining his crowd of men with long jokes that included both Cajun and British accents. When Momma finally got a reprieve from two teenagers who scooped up Kelly to play in the sand box,  she had hightailed it to the fried catfish spot where Lee Esther was already cleaning out the cast iron Dutch oven. “You missed the last of it,” Aunt Fanny told her.  And the skinny widow walked off with a paper plate full of catfish.  Once home she would face a kitchen full of dirty breakfast dishes, baths for three overtired girls, and a load of laundry to fold. Her own mother’s words “It never ends” echoed in her head.

Now driving home the girls’ off-key singing added to Momma’s hunger headache.  She made a right turn onto the road that led to Eunice and sighed.  

“Ginger, you can’t carry a tune in a bucket,” she told me. She did not notice my quivering  bottom lip when I slumped back on the seat and stared out at the pine trees that lined the ditches of the highway.

Gerry and Reginald, 1982, The Calcasieu River

Cerebral Palsy

Lost in Space

 Lost in Space – 1964  (Mary Poppins)

“Danger, Will Robinson! Danger!” yelled a third grader as she got into the robot’s part, waving her arms around like a frantic parent. I  got stuck playing a bad guy alien and walked mummy-like toward the girl who had nabbed the prime role of Penny Robinson. I added head jerks and let out,“Beep! Boop! Ding!” in the way an alien would do as I chased the Robinson family.  “Run!” yelled the good guys as I followed the retreating kids and raised my arms to seem scarier.   

At St. Edmund’s School my classmates and I recreated scenes from hit tv shows at recess. This week’s television obsession was “Lost in Space.” We girls vied for roles each day and half-imitated/ half-made up episodes about the Robinsons in outer space. During this Tuesday’s recess, I did not see the skinny new girl right behind me. Skinny Girl mimicked my spastic left arm movements and limping left leg.  A group of first graders giggled and encouraged the newcomer’s accurate imitation of my cerebral palsy crookedness. When I turned to see who was laughing, a popular seventh grader had cut across the playground on her way to the school’s front office and noticed Skinny Girl’s shenanigans.  

She yanked the performer by her fake-crippled left arm. “What are you doing?” she demanded. Before the child could answer, Seventh Grader lit into her. “How dare you? Don’t you see she’s crippled? How would you like to have to walk lopsided?  You think it’s funny?  Funny to be born with a birth defect – to be slower and weaker than everyone else?  Wait until I tell Sister Joan what you did!” And all during her lecture Seventh Grader shook the girl’s arm as other kids gathered around. First, they stared at Skinny Girl looking like a dish rag someone was twisting the water out of. Then they looked at me. Pity and sadness shone on each kid’s face. Had they always looked at me that way?   

Next Seventh Grader yanked whimpering Skinny Girl to stand in front of me.  “Apologize right now!”  

The younger girl’s navy blue skirt had a safety pin holding it up at her waist, and all that shaking had pulled the white blouse out of its tucked-in position. I noticed that her hem was frayed and stained. Also, the girl’s thin black hair was half-in rubber band pigtails and half-out. I thought that I should be apologizing to her for the mess of the way she looked. 

“Go ahead. Say you’re sorry,” Seventh Grader told her. 

The young girl stared at her untied, dirty saddle oxfords and whispered, “Sorry.”  

“Louder! So she can hear you.” 

“I can hear her,” I said, looking down at my own ugly, scuffed brown corrective shoes. 

“You ok?” Seventh Grader asked me, and I nodded without looking up. I knew if I said anything else, I’d be crying through the rest of recess. Skinny Girl was half-dragged towards the front office.

An empathic third grader put her arm around my shoulder, and the whole “Lost in Space” game was shot to shit. “That kid is just a stupid Yankee from Shreveport,” my friend said. I heaved a sigh and felt even sorrier for Skinny Girl. 

“Gotta pee,” I said before turning to run to the bathroom. Once safe inside a stall, I felt fortunate that I’d chosen one with a lock that actually worked. The words “crippled” and “birth defect” bounced around my brain over and over: “crippled…defect…defect…defect…crip…crip…defect…defect.”   I turned the words into a type of music I heard on KVPI.  “defect, defect, deco, deco, zydeco, zydeco, zydeco.” 

I tapped my black umbrella on the floor a few times and looked around the mess of a nursery.  I removed my neat black hat with white flowers on it and patted my neat brown bun. Two small children looked up at me. “First, we must clean your untidy room,” I said with a confident smile. I snapped the fingers of both hands. Music played, and a robin sang outside the nursery window. As I sang a song about sugar and medicine, I taught the boy and girl how to make their room as neat and sweet as I was. With a whistle here and umbrella taps there, the beds were made, toys were put away, and the room was “practically perfect in every way.”  I even had the robin accompany me in the song. The children loved my magic and we became instant best friends. Without warning, the song ended and a long ringing erupted from the hall.

Recess was over. I flushed the unused toilet, wet my fingers in the sink, ran them through my hair, and looked in the mirror to make sure my eyes were dry before I rushed outside to line up outside Sister Grace’s classroom door.

Cerebral Palsy

Heel, Toe

 Heel, Toe- 1963 (101 Dalmatians)CP clinic

On August 23, 1956 the oxygen in the Eunice hospital’s delivery room was not working, so the doctor who performed the c-section that brought me into this world had to give me mouth-to-mouth resuscitation. My time without oxygen led to a case of cerebral palsy that affected the left side my body, especially my leg and arm. My momma did not notice a problem until I started to walk and a cousin told her, “That child has a problem.” After my CP diagnosis, from ages two to ten I had weekly physical therapy sessions at the Cerebral Palsy Clinic in Opelousas, Louisiana.

I called my therapist “Uncle” Daly.  He had a pink face and hair cut so close to his head it stood straight up. He smelled like Old Spice and liked to spoil me.  “I got something for you,” he’d say at the end of my exercises as he held out two closed fists. “Which hand you want?” and even if I picked the hand without the treat, Uncle Daly opened the other hand and gave me the Bazooka gum. I hugged his neck when I first got to the clinic and when Momma and I left.

The thirty-minute sessions quickly became routine.  First, I’d climb up wooden steps to lie on a padded brown table so Uncle Daly could stretch my left arm and leg. He’d extend my left arm as far as it could go and open my crooked, sweaty fingers in his large palm. When he tried turning my wrist palm up, it never cooperated, and I would see faint freckles underneath dense yellow curly hairs on his forearms. Then he moved my left leg up and down and side to side. The stretches felt necessary and my appendages enjoyed the forced movements.

But then came the individual exercises that lasted forever. 

Uncle Daly first had me walking the length of a large room in front of a tall mirror. Wearing stiff white corrective shoes, I focused on my left foot. “Heel, toe,” was his directive. My foot had to be reminded how to walk properly since it preferred to drag itself along the floor, leaving my left shoe’s toe scuffed and worn down. I repeated Daly’s “Heel, toe” instructions with each step I took toward and from that full mirror.  Of course, the “heel, toe” mantra could not correct my limp since my left leg was a couple of inches shorter than my right.

Uncle Daly also told me to keep my skinny, crooked left arm down by my side and not up at breast level with a bent wrist like some stroke victim. But my number one concern was my left leg, so my head repeated “Heel, toe” as I walked the length of the linoleum tiled floor. The back and forth monotony and the full mirror image of my uneven self made me yearn to be someplace else. It felt like I walked back and forth seventy-seven times, but it was really twenty times because I had to keep count in her head.  “Don’t drag your left foot; remember heel to toe,” said Uncle Daly. So I did the first two lengths perfectly because my therapist was watching. Halfway through the fourth walk, I focused on the thuds of a kid going up and down the exercise steps and the clanks of metal weights lifting and falling.  Like  zydeco…zydeco…zydeco tunes on the radio, the rhythms took me away from my boredom.

I ran across a field of deep snow with beautiful even strides. My even legs let me keep pace with Pongo, my faithful Dalmatian, who barked his encouragement.  We were guiding ninety-nine puppies towards a large barn in the distance.  I had rescued the pups from the witch lady with two-tone hair right before the bumbling henchmen tried to kill them.  Once inside the barn, the puppies  raced with each other across the hay-scattered floor. Only Rolly had trouble keeping up.  “Not only do we have the cutest puppies in London; we will also have the fittest pups in all of England!” I said.  Pongo yipped approval. Using both of my nimble hands,  I raked hay into neat bedding piles for the puppies after the barn’s generous milk cows fed them.  Rolly preferred sleeping in my lap.  I smiled knowing I had a secret plan to get all the dogs to safety in the morning.  Pongo put his paw on my elegant left hand and gave me a dog smile of gratitude.

“Let’s go,” instructed Uncle Daly. “Time for your stair work.” I turned from the long  mirror and met Darby at my next exercise station.

Now during these COVID19 times I go on early morning walks right after the sun rises. I maneuver the uneven sidewalks of my neighborhood, look down at my sneakers of two different sizes, and recall the “heel, toe” exercises of long ago. These uncertain days require awareness and concentration. Watch your step. Don’t trip. Notice things. Wear your face mask. Wash your hands. Don’t touch your face. Keep social distance.

As a child, I followed my therapist’s directions to strengthen my under-developed leg and to teach my foot the proper way to walk. Today the “heel, toe” reminder keeps me from falling and it makes my unruly, worried brain stay focused and not race into dark rooms of disease and anarchy and hopelessness. I tell myself to think as I move through my day’s routines. Take my time, watch my step, and notice the tiny purple flower between the cracks of the hot concrete.purple flower