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.

Sisters

Dig It

The camp sand box
Ginger, Emile, Kelly, & Gayle at the Camp

Dig It  1962-  (Breakfast at Tiffanys)

Only my right hand had dark brown sand stains. A rainy afternoon at Grandma’s camp near south Louisiana’s Calcasieu River meant coloring and playing cards on the front porch or digging in the sand box off the side porch.  My sisters and I had dug holes and shallow moats and created lopsided sand castles for over an hour. The rain pelted the tin roof as Grandma, Stella Parrot, and Momma sat and talked over Salty Dogs on the front porch. 

We had kitchen spoons for shovels and two empty plastic gallon ice cream containers for buckets. My hair was in high pigtails and most of my curls stayed in their rubber bands.  Gayle had a new pixie cut just below her ears, and less hair made her look more confident.  Two-year-old Kelly had hair that barely reached her shoulders and bangs that made her large brown eyes look soulful. 

When her firecracker temper stayed contained, she watched her sisters with a focused stare unusual for a toddler.  Any activity the older girls got involved in had to include her. During sand castle construction, Kelly tried filling one of the buckets until that bored her. But this baby sister would not be left out.  She threw Gayle’s spoon into the rain-soaked grass and stepped into my half-filled bucket of sand.  After many, “Stop that’s” and “No, Kelly’s” Gayle and I took turns burying the two-year-old’s feet while the other sister tended to sand castles. 

Once the main buildings looked decent and Gayle was building a moat, I taught Kelly about tunnels. I dug two three-inch holes with her spoon about a foot from each other.

“This is your hole,” I told Kelly.  “Now use your hands to dig sideways to me.” And I demonstrated how to dig. 

“Dig,” said Kelly, and we worked together.

“You dig my way,” I said, “to make a tunnel.”

“OK,” said Kelly.

After a minute of digging, I moved to Kelly’s hole and saw she was digging down, not across.  “Dig my way,” I repeated.  “Make a tunnel sideways,” and I tried to show her.

“My way,” said Kelly and pushed me aside.

“That’s not a tunnel.”

“Mine!”

So I made the tunnel myself with my right hand, using my fingernails to scrape sand out of my hole and dig to reach Kelly’s hole.  My left wrist hung bent and useless at my side. I wiped loose hair from my face with the back of my good hand. I felt like the tunnel was almost done. Kelly stopped digging and looked over at Gayle’s moat progress. I guessed the two-year old’s thoughts. 

“Hey, Kelly, put your hand in your hole.”  She looked at her boring hole and back at Gayle’s interesting project.  I dug faster.  Kelly stood up.

“Hey! Lookit your hole,” I said. “We made a tunnel! Stick your hand in!”

Kelly reconsidered and knelt by her hole. 

I raised my voice gave her my best smile. “Wow! We made a tunnel! You’ll see when you stick your hand in!” I said. 

And like a miracle, just as Kelly reached in, my fingers broke through the sand, wiggling and reaching for the toddler’s hand.  We both smiled as fingers touched and I strained to shake the small hand. Kelly squealed at the success of the sand tunnel. 

“G.!  G.! Lookit me!” Kelly told the moat maker.  Gayle kept working.

“We did it!  You and me!” I said, and Kelly’s excitement got her up and dancing.  She stomped our sister tunnel collapsing it.

Then she danced toward the unimpressed Gayle. “I did it! My tunl!” she said and her jump destroyed half of the moat. 

“No! Kelly! No!” said Gayle, but Kelly jumped toward the rest of the moat.  Gayle stood and pushed Kelly backwards and her fall destroyed the fancy half of the sand castle where her sister had added rocks and leaves as adornments.  “Stupid Kelly!” said Gayle and threw double fists of sand at the kid.  Kelly kicked with both legs to bring down the other half of the castle.  Gayle tossed half a bucket of sand at Kelly with most of it landing in her eyes.  Kelly screamed and lunged for Gayle, but since the long black hair had been cut off, the toddler had nothing to grab.  The girls tumbled around in the sand. 

I walked to a wooden sand box swing, sat, and used my toes to move it back and forth even though raindrops peppered my back. The swing creaked back and forth, and I listened to zydeco…zydeco…zydeco rhythms coming from the adults’ radio on camp’s front porch.

I sat on a sofa in my New York City apartment with handsome Fred. I wore a sleek black dress, and my long dark hair was arranged in a fancy twirled bun to accentuate my dangling diamond earrings. I went to the table and from a large hat box pulled out a dramatic black hat with a prominent white sash. As I put on the hat, an orange cat jumped on the table and then out the window even though it was raining.  “Hey, Cat!” I said. 

Fred moved next to me and said, “You don’t have to leave.” 

I said, “But of course I do, Fred, darling,”and I donned a pair of cool sunglasses. “Please help me find Cat.”  I pulled on a beige rain coat, walked out the apartment and down the stairs. 

Fred followed with, “Wait. You know I love you.” I stayed focused on finding Cat and rushed down the busy sidewalk and turned into an alley when I heard meows.  Cat was behind a trash can and I reached down, rescued him, kissed his wet head, and tucked him into my rain coat.  Fred ran to meet us and hugged and kissed both me and Cat.

“You’re getting all wet,” said Gayle as she watched me swinging into the rain. 

“Gingah!” said Kelly.  The sisters had stopped fighting – more interested in my strange behavior than throwing sand.

I jumped off the swing, approached my sisters, and brushed sand from Kelly’s yellow romper.  “Look at you, my darling, you are such a mess.”  I picked up my youngest sister and rested her on my hip.  “Let’s go have a coloring contest.” 

“OK,” said Gayle and kicked the ruins of her sand castle world.  “I want a popsicle!” 

“What an absolutely marvelous idea!” I said, and Kelly smiled and rested her sandy head on my shoulder.

Movies

Red Lobby Benches

Red Lobby Benches -1962 (The Magnificent 7)

Liberty 1
Liberty Theater now

Gayle and I slipped back and forth and up and down the long red plether lobby benches as we waited for the 8:00 pm showing of Music Man at the Liberty Theater. The line for tickets wound around the corner, but we had just waved to Miss Pearl as we strolled past the line and into the lobby.  Being grandkids of the owner of Eunice, Louisiana’s picture show had its perks.  Normally we watched the six p.m. feature, but this Saturday our parents had their annual “progressive supper” where five couples went to five houses for a multi-coursed dinner.  Two-year-old Kelly was staying with Grandma and Stella, so the picture show served as a babysitter for the older kids, with Big Jim and Miss Pearl as overseers.

We played in the crowded lobby as patrons waited for the early feature to “let out.”  Since the carpeted area right past the concession stand inclined up towards the entrance into the theater, the two long red lobby benches held interesting dimensions for games. The beginning of each bench was high above the carpeted floor, and at ages four and six  we struggled to climb up to the seats. As one bench got closer to the usher’s chair and the other ended at the theater entrance, the distance from floor to bench was shorter and no problem to climb up on. 

We had created the Swimming Across the Lobby game for the times we had to wait for the show to start.  The lobby’s carpet was the Calcasieu River; the lobby bench on the right side was the sand bar line while the left side bench represented tall pine woods. The mostly grown-up theater audience in the middle were alligators, and kids were snapping turtles. If you touched any of these, you drowned. On the sand bar side of the bench you could sit and plot how to cross the river.  On the tree-lined side, you had to stand and hold on to the walls or risk tumbling into the dangerous waters. You could not stay on either side longer than ten Mississippis. If you did, your sister was allowed to push you into the Calcasieu.

Since we had arrived twenty-six minutes before the eight o’clock feature, the lobby had few alligators to avoid.  We went across the lobby with big confident swimming strokes. Only once did Big Jim say, “No running,” (to G. of course).  Claude Emile sat on the tall end of the sand bar side reading a Superman comic. He pushed Gayle off the bench because she got too close to him, so she fell into the river and had to avoid four alligators that had just bought popcorn and sodas. 

I did not relish swimming across the lobby.  What I enjoyed was scooting up and down the long length of the red benches as I counted in my head.  I’d start at low end of the pine woods next to Big Jim where my toes reached the floor and then slide towards the concession stand and watch the floor get farther and farther away.  On a less crowded night the benches would be free of people and I would move up and down as fast as my uneven arms would allow. I could pretend I rode a horse clippity-clop up a mountain. My horse would be the world’s smartest and fastest animal, but he let only me ride him. We’d trot up the mountain to get a bag of gold as a reward for saving a baby from the outlaws who had kidnapped it.

I  had forgotten about my sister, who had left the tree side bench and was swimming over to force me into the river.

Ginger and Gayle 1961 or 1962
Me and Gayle, 1961

 

Black Beauty and I were halfway down the mountain when Gayle grabbed my right leg to climb up on shore. I kicked her like a reflex move and she fell backwards.  The four-year-old landed with a thud and startled an unsteady grandma and her toddler grandson.

“My lord, cher! Why you on the floor?” she said.

“Oh, yi, yi! I’m gonna die,” said Gayle as she struggled to stand up.

I jumped off the red bench and stood up her dramatic sister.

“Sorry, ma’am,” I said.

“Find your momma,” said the grandma and she led her grandson up past the theater’s entrance and into the Cry Room/ Smoking Area.

“You’re drownded,” said Gayle.

“Give me your nickel. I’ll get us some popcorn.”

“I want Dots.”

“You don’t have enough money. A nickel only can get you a Tootsie roll or Pixie Sticks.”

“Dots.”

“They cost two nickels,” I said as I led my sister to the concession line. “Let’s get popcorn with both our nickels; it lasts longer.”

“No. Dots.”

“I want popcorn.”

Gayle shook her pageboy bob back and forth. “Dots!”

“Let’s flip for it,” I said and took out my nickel and tried to hold it on my curved index finger and use my thumb to flick it in the air the way Dad did. The nickel plopped to the floor and rolled away. Gayle got on her hands and knees to follow the coin, but it rolled its way behind the glass candy display case. She stood and pushed a short wooden flap door that separated customers from concession workers and her from the nickel she needed to get Dots.

“Hold on, kid! You can’t come back here,” said a teenager with braces and over-sized glasses. Her brown eyes were magnified by her thick lenses.

“Dots,” said Gayle.

“Get in line,” said the teen.

“Nickel?” tried Gayle.

“Dots cost a dime.”

I grabbed my sister’s hand as the teen pushed her to her designated area, and said, “Sorry” for the second time.

“Ginger! I want Dots.”

“All we have money for now is a Tootsie Roll. Give me your nickel.”

“ No. Dots!” And she stomped away.

“Get back here,” I said and watched Gayle walk up toward the main lobby and get in everyone’s way. A man wearing overalls and a sweat-stained cap took a step backwards to make way for the black-haired, blue-eyed child who walked with both hands balled into tight fists. I stopped to sit on the red bench on the tree side. The lobby had filled with young couples and families and rowdy teens. The popcorn machine was overflowing with the hot, buttery kernels I craved. The popping sounds slowed and spaced out until I heard a staccato zydeco…zydeco…zydeco.

The steady clop of horses in a line through the brown world of mountains, sand, and scrub grass kept me confident.  The six gunfighters followed the man dressed in all black.  Their combined gun, knife, rifle, and tracking skills made them ready to defeat the outlaws that tormented the village of farmers all dressed in white.  Working together, we seven sharpshooters would be magnificent!  As the youngest gunslinger in the bunch, I brought up the rear. Being the only girl, I fought for acceptance with more action and less talk.  None of the other six men were blabbers. Their tight-fitting cowboy hats and their swift hands gave them taciturn demeanors and bold movements.  During that day’s siesta, I could sneak off to catch a few fish or snare some rabbits to add to their supper. I knew my six-shooter’s aim had improved after riding with these men. A sharp jab to my shooting arm startled me.

“Take care of Gayle,” said Claude and he pointed to a tall guy with his short date talking to the four-year-old.  The guy looked annoyed while his girlfriend was all smiles. I walked over to them.

“You shouldn’t kick strangers,” said the tall one to Gayle.

“ You’re lost, aren’t you, honey?” said his petite date who was not that much taller than me.  Gayle gave the teen the once over and caught sight of the box of Dots in her right hand.

“Dots!” said Gayle.

The girl laughed. “You like Dots?”

Gayle returned the laugh and nodded.

“I’ll give you some and then you tell us where your momma is, ok?”

Gayle cupped both hands and held them up to receive some of her favorite candy. I watched the generous girl fill both my sister’s hands.

I approached and said, “There you are, G. Let’s go find our seats.” I put my right hand on Gayle’s left shoulder to steer her away.

“Keep better watch of your sister,” said the tall guy and his date winked and waved at Gayle.

Gayle put most of the Dots in her pockets and popped two in her mouth. She then handed her nickel to me and said, “Tootsie Roll.”

 

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