ENTRY 6

A REBEL ON WHEELS

Juanita  Randall. The only person  I had ever known who'd traveled the world. She had even ridden a camel in Egypt. I was impressed.  I could not wait to be in high school. I could have her as a teacher. (Well, there was another reason. A high school girl was always given the role of  Mary in my school's  Christmas play. By the time I got to high school, the nativity scene had been removed from the play. I am not bitter or anything.)

Miss Randal was a no-nonsense teacher. Her curriculum was like any other high school. Her students learned Spanish and read Charles Dickens and Shakespeare.  A requirement for graduation was that all seniors submit a term paper. If a student's paper did not meet her standards the student did not graduate. That never happened. it motivated students to do their best. 

My school began accepting students at all different levels of cognitive development. Miss Randall  did not adapt to the school changes. One day she walked out.

Adios Español.  So long, term papers. Cheerio Shakespeare. When Miss Randall walked out those courses left with her. I was crushed

Enter Penny. Penny was a hip, kind of kooky young woman who was our teacher but wanted to be our friend. "Call me Penny," she told us. It took us a while. Scratch that. It took me a while to get over the disrespectful feeling I got every time I called her by her first name.

Because of the cognitively diverse group of students we now were, I knew that I wasn't learning what I needed for college. I'd had enough. "You're not teaching us anything!" I yelled at Penny What happened to the journalism class? Our heated conversation was the talk of the school for a day or two. Nothing changed. I realized that Penny was doing the best she could under the circumstances.

I wanted Miss Randall to speak at my graduation.  I was not alone in wanting her as our speaker. One of the teachers assured me that she would not accept the invitation. None of the teachers had heard from her since she'd walked out. Miss Randall and I spoke on the phone occasionally. She would accept my invitation if I told her how much it would mean to our class.  I refused to back down. My class threatened to go on strike. I was told if we didn't drop the issue none of us would graduate. I dropped the issue. The former principal was our graduation speaker.

Thank you, Miss Randall. wherever you are, I hope you know that the semester I had you as a teacher left a big impression on me. You were the best teacher Elias Michael ever had. You believed we would succeed, and you prepared us to do so. You were not as tough as you wanted us to think you were. You were completely different outside of your classroom. You were relaxed, not tough as nails. You were cool.

That was the first time I rebelled against the norm. Against authority/ I shocked everyone. A kid with a disability in the 1970s wasn't supposed to have opinions.  Hmm, How do you think I'd look in a black leather jacket?

ENTRY 5

OH XMAS TREE, DARN XMAS TREE

When I started elementary school, drawing, painting, and being creative in any way, shape, or form,  was a big deal. I  went to a public school for children with physical disabilities. I was struggling with learning to print my name on the blackboard. Draw? No way. There weren't any Special Ed. classes for teachers in the sixties.  My first-grade teacher was clueless.

Gone were my carefree days of preschool. (It was called nursery school in the sixties.)  UCP's nursery school was held in Cardinal Glennon Children's  Hospital. I went three mornings a week from age three to age six. My teachers did not care how my finger-painted picture looked. They did not care if I simply rolled the cool modeling clay around in my hands without trying to make anything. And, blowing soap bubbles was about who could make their glasses overflow with bubbles first.  It was fun with a dose of learning mixed in. 

I was too little to realize that one of my nursery school teachers also had cerebral palsy. She could not use one of her arms very well. She walked with a limp. She was a role in us whether we knew it or not I have fond memories of both teachers. I stayed an extra year. The extra year allowed me to go from nursery school right into first grade. 

I don't remember much about my attempt to paint a picture that day in first grade.   All  I remember are the colors blue, and green, and a big glob of light pink running down the page. My teacher was not happy with my effort.  

Learning to use an electric typewriter changed my life. I didn't have to be ashamed of my chicken scratch printing anymore. I could do my assignments. I could keep up with my classmates. All was right in my world. Until...

I was told to draw a Christmas tree using my typewriter. UGH. Would it ever end?  A high school girl, who was at least ten years older than I was, could not use her hands, but she was able to type using a headpiece with a pencil turned upside sticking out of the end of it.  Her typed drawings were featured in the school's newspaper. If she could draw, then so could I.

My typed drawing was the front of a Christmas card for my parents.

X backspace X  Oops. How did that X get out of line?  Oops. that X is out of line too. Start over. A fresh piece of paper  I am ready. I turn on my typewriter. It begins to hum. X backspace X

X backspace, Backspace X. Oops.  It was no use.No matter what I did my drawing was full of mistakes.  My teacher affixed my mistake-riddled tree to red and green construction paper. It was a card only parents could love.

Each year, when my mom got her Christmas cards out, I'd see the card I had made. She'd kept it. Cheesy red and green construction paper boasting a crooked tree made with Xs.  My mom kept it because I had done the best I could. That's all that mattered to her

 

ENTRY 4

WONDER WOMAN

Teenage girls with disabilities always stick together. They always have each other's backs. They would never be catty or mean to one another. Gag me. Teen girls with disabilities, in the seventies, were just as catty, selfish, and mean as their non-disabled peers.

Mary was two years older than I was. She also had CP. It was difficult for her to talk. She'd throw her head back. take a deep breath and struggle to get her words out. It was painful to watch. I can only imagine how painful it was for Mary. In high school, she was given a communication board. Mary refused to use it. My guess is that even though talking was difficult for her using d a communication board made her feel weird. She probably did not want to appear more disabled than she already was.

Mary's mom pushed for us to be friends. Mary and I had little in common except for our shared diagnosis of cerebral palsy. Mary hated school/I knew from an early age that I wanted to go to college. Mary faked being sick as much as she could. (I tried it once. My mom was no dummy. She knew I wasn't sick. She let me stay home but made it clear I was never to try it again)  Marty told me no one was going to make her do anything she did not want to do. No one ever did.

When I was still able to push myself in a manual wheelchair our moms took us to the mall. Mary held on to my chair while I pulled her along. She got a free ride. I got blisters. Mary knew how to get what she wanted that's for sure.

In the eighth grade through high school, I was teased and called names (Virgin Ears, was a favorite.) The kids in my class thought it was hilarious when they dropped heavy books on the to watch me startle.

I brought my lunch from home. If I had chips in my lunch   Mary would grab them, hold them out of my reach, then smash them into potato chip dust while the kids who saw what she was doing laughed their heads off.

This went on for a while until the day I had had enough. I do not know what possessed me. I had never fought back or lashed out at my classmates before What happened after lunch makes me sound like a terrible person, but I was thirteen. and fed up. I had to stand up for myself. I did. I started scratching her. I drew a little blood. My teacher stopped me.

Mary never touched my lunch again The other kids eased up on me a bit too

My mom lectured me on how lucky I would be if none of the scratches got infected. That was the end of it.  Mary was fine.

I am both embarrassed and proud of my actions that day in 1970.

Would you believe her mom still tried to get us to be friends?

THE CURE FOR THE QUARANTINE BLUES

Image is from the Prays to God Facebook Page

This quarantine thing sucks
I have the blues.
What?
You do too?
Compassion is the cure.

Cursing won't cure them.
Yelling won't cure them./.
Name-calling makes them worse
Compassion is the cure.

People are hurting.
Frustrated
Lonely.
Start a conversation.
Listen.
Learn.
Compassion is the cure.

.
The SC at Jaywood went out of her way to make sure I had all the foods that I love on my birthday.
I will never be able to repay her for all things she has done for me.
She does then anyway.
Compassion is the cure.

Happy Hour at NHC is still going strong.
During quarantine, if a resident can't make it to Happy Hour, the Booze Caboose will come to them.
I have seen the videos.
They made me smile.
Compassion is the cure.

To all the essential workers a million thank you's are not enough to show appreciation for your service.
Compassion is the cure.

To the Jaywood staff who is caring for me and keeping me safe.
You're doing an amazing job.
You've put your lives on hold.
Moved in.
Thank you.
That is the ultimate example of compassion.

Compassion. The perfect cure for your quarantine blues./.

ENTRY 3

MY HEART SKIPS A BEAT

Do you have a memory that you know you couldn't possibly remember because you were too little, but you swear that you do?  Or do you remember it simply because you've heard it so many times it's become an urban legend in your family? Here is mine
 
I was sitting in my highchair in the kitchen with my family. The pressure cooker was on the stove. The stopper .popped off. The pressure cooker exploded with a loud hissing sound. I am sure that I was startled, and looked around confused as my family ran out of the kitchen and out of the house leaving me in the kitchen thinking to myself, "Hey, what about me?" Don't worry my family came right back in when they realized they'd. forgotten me.

The Moro Reflex, also known as The Infant Startle Response disappears in babies by six months of age. If it does not it's an indication that a child has some kind of developmental delay. Characteristics of the response in infants are Jumping at loud noises and flailing their arms. It's an infant's fight/flight response. The baby's adrenaline kicks in.

In adults the response is characterized by jumping at sudden loud noises, people moving suddenly, flashes of light, tapping someone on the shoulder, or just looking at someone.

I have all these characteristics I hated flash photography. I would wait for that blinding flash of light. close my eyes and contort my face This made for some memorable photos I can assure you. I do much better now. With cell phones, the flash can be turned off and the photo still turns out great. I am vain. I actually like having my photo taken Who knew?

When I startle my heart jumps. The older I have gotten the more I have noticed this. It is an uncomfortable feeling.  A doctor put me on Valium when I was in high school. That made me so tired I could not function. I refused to take it after several days.

On the Fourth of July, my fight/flight response kicks in. I understand fireworks, but all I want to do is run away from the noise.  I can't believe I  admitted that to all of you.

I learned there was a legitimate name for my jumpiness in college when I took a child psych class. Yay. It had a name. It was a part of my CP. I was not just weird

If you see me startle just ignore it. Don't apologize You have not done anything. Please don't laugh or try to make me startle on purpose because you think it's funny. It's not. It just is  My startle response is one piece of the unique puzzle that is me.

ENTRY 2

WELCOME HOME

I came home around the time of my original due date. I am sure my mom dressed me in a pink girly outfit. I am positive of this because I remember all the smocked Polly Flinders dresses and black patent leather shoes. and little white socks with lace trim My name was monogrammed on my socks by my aunt.

 I came home to three older brothers. My maternal grandparents lived next door.  I was surrounded by love.

The first summer after I came home my family did not get much sleep. I was hot at night. I cried. By the next summer, we had central air conditioning in our house. Much to the relief of my family.

I imagine there were subtle signs of my CP early on. Maybe it was difficult to dress me or change my diaper. My spasticity makes my limbs tight,. My mom pushed any questions she may have had out of her mind.

But when I was eighteen months old, and not able to sit up on my own, not making an attempt to crawl or walk my family knew something was wrong. They took me to a doctor

I was a happy baby. Smiling and laughing. My mom told me that when the doctor examined me I did not react in any way. Not even when he ran his fingers down my side trying to tickle me. I have my own theories about why I did not respond.

A. The exam table was cold.
B. I sensed he was about to deliver news that would upset my parents,

"See how her mouth droops?  She's paralyzed on her left side. (I'm not)  She has cerebral palsy. There were other things discussed. The fact is that I would most likely be mentally challenged and not expect me to achieve very much. Did I mention that I knew the doctor was mean? He obviously failed bedside manner in med school.

My parents left the doctor's office devastated and confused, as to why I had not responded to the doctor in any way, but they were more confused about what the diagnosis of CP meant for me.

We were about to embark on a journey A rabbit hole of PT/OT and doctor's appointments. Leg braces, night braces, standing tables, parallel bars, walkers, and more.




.

ENTRY 1

DEDICATION 

My memoir is dedicated to my family. Thank you for your encouragement. and the sacrifices you've made on my behalf. I would not be the person I am today without your guidance and support.

FASTEN YOUR SEATBELTS...IT'S A GIRL

I was born in April. Two and a half months ahead of schedule. I wasn't supposed to make my appearance until July. I couldn't wait. I wanted to see the world. Okay, St Louis, was not the world, but It was a beginning. I had things to do. Or, and this is probably more accurate, God knew I would not enjoy celebrating my birthday in July. Nope. Fireworks on my birthday? The way I  startle? Not happening.

Cerebral palsy can occur shortly before, during the birthing process, or shortly after. The cerebral cortex of the brain is either damaged or underdeveloped. My mom had been bleeding for eight days before I was born. I can only imagine how frightened she must have been. Today she would have undergone a C-section. I would have been. rushed to the NICU.  Maybe I would not have been as severely disabled as I am if these options had been available. I will never know. My mom told me she was pretty sure the doctor suspected something was wrong with me, but he didn't want to tell her.

In 1957, April 19th fell on Good Friday. When I was little I would sometimes tell people I had two birthdays because well technically I do. Hey, I was a kid looking for more presents what can I say? You know you'd have done the same thing. I think I was born in the late afternoon around five o'clock. My mom said I looked like a tiny spider monkey, all arms and legs with a mass of black hair. She didn't get to hold me when I was born. I was placed in an incubator immediately  I was not weighed when I was born. Two days later, on Easter Sunday, I weighed in at a whopping two pounds nine ounces.

The windowed box would be my home for the next two and a half months. I saw the photos. I did not look happy in my temporary home.  I blame living in the windowed box for two and a half months for my fear of being alone For my first months of life no one held me. I was cared for by medical professionals. My parents could not touch me. They could only look at me through a window.  No wonder I have issues!!

And my mom? I can't begin to imagine how she must have felt being discharged from the hospital, but leaving me behind. She came to see me every day I imagined her looking at me through the window trying to connect with me in some way. As for me, I  believe I knew she was there. We'd meet soon. I would meet all of my family soon. I just had to be patient