I'll TAKE CEREBRAL PALSY, PLEASE

 

I didn't choose to have cerebral palsy.

 It's not as though before I was born God said to me, "I am giving you a disability. That may sound bad. The good news is you get to choose the disability I give you." 

Then God pulled out His Menu of Disabilities. (Writing this is making me laugh. I ask for your indulgence.). He began to read my choices to me. When I heard him say spastic cerebral palsy. I didn't squeal with joy. I didn't say, "Oboh, that disability sounds cool. I'll take cerebral palsy, please. What's that? Spastic quadriplegia is the most severe diagnosis of CP? Cool. Sign me up. I am up for the challenge."  

If God gave me this gift because I needed to learn a lesson, I wish he would give me a hint about what that lesson is, a hint about my purpose. 

If I was chosen to be given CP because God was confident that I'd be able to handle it God had more faith in me than I deserve. There are days when everyone with CP is taking it much better than I am. Of this, I am sure.

It would be awesome if there was a CP handbook titled Congratulations. You Have Cerebral Palsy. (A Guide for A Happy and Productive Life) This handbook begins when a child is diagnosed with CP and ends with a chapter on aging and CP. (I read on the internet that individuals with CP only lived to the age of forty-five. I'd like to meet the idiot with that statistic.)

Chapter titles might include:

Wheelchairs, walkers, and doctors oh my!

There will be stairs and stares

Why special schools/classes aren't special

Date me. I am a fun spaz

College = freedom

Hi, I'm your new staff member it's time for your shower.

Look out world. Here I come

It's not you.  Society is the problem

Not a member of the wedding

Who says elderly CPers aren't cool?

This handbook would serve as a humorous reminder to parents, children, and adults with CP that they are not alone. Whatever challenges they are facing someone else is facing those same challenges.

I didn't choose to have CP. I often wonder what my life would have been like without it.

 Cerebral palsy taught me to be compassionate, to understand empathy, and to believe that we all contribute, no matter how severe our disability is. We matter.

I got my answer.

THE THREE P'S

When will  I ever learn? No, you don't need to have your eyes checked. I deleted my previous post. One stint as a public relations nightmare was enough for me. I don't want history to repeat itself. Hit the erase button on your memory if you read it. This organization did not deserve such a negative and hateful post.

I am the problem. I do not know how to get along with the staff. The staff has difficulty getting along with me. (See a pattern?)  Upon approval, I am going to start behavioral therapy. First alone, then with the staff here in hopes of all of us gaining a better understanding of one another and working out our issues.

The staff here are people with their own lives and struggles. They are not bad people. They show up every day no matter how their feeling. They make sure we are happy they make sure we are fed and safe. (You don't bite the hand that literally feeds you.)

I want to get better. I want to have a better working relationship with the staff here.

I might check out a couple of nursing homes too. Cuz hey, you never know. For now, I am committed to making things work here. I don't want to be a three-time loser.

I am excited about behavioral therapy. Until it starts all of us will be working on the three p's. Positivity, politeness, and patience. I will try not to be so set in my ways. No guarantees though. I am old. It goes with the territory. Ha. I am so witty,

A while ago I emailed the director some questions for an interview. I hope she's still up for it. She is an amazing woman. She makes sure all of us have what we need. I can't wait to read her responses.

  

UGLY LAWS

Between 1867 and 1974, various cities in the United States had unsightly beggar ordinances, which were retrospectively also dubbed ugly laws. 

For instance, in San Francisco, a law of 1867 deemed it illegal for "any person, who is diseased, maimed, mutilated or deformed in any way, to be an unsightly or disgusting object, to expose himself or herself to public view." 

Exceptions to public exposure were acceptable only if the people were subjects of demonstration, (They put us on display.) to illustrate the separation of the disabled from the nondisabled and their need for reformation.  Source: Wikipedia 

I found out about the ugly laws via an Instagram post. I was shocked. Surely, the person who posted about these laws was misinformed. I googled. I felt sick to my stomach. It was true. Ugly laws had existed in some cities in the U.S. until 1974. 

I want you to imagine being forced to stay in your house, being fined, jailed, or sent to a workhouse because the sight of you made people uncomfortable. People called you disgusting. 

These laws were not repealed until 1974.

The ramifications of these laws speak volumes.  The ripple effects of these laws are still being felt today.

In 1982, after graduating, with my MSW degree, United Cerebral Palsy would not hire me because my presence would make parents "feel uncomfortable."  I left the interview confused and defeated. In my mind the exact opposite was true. Hiring me would have given parents of children with Cerebral palsy hope that their children's future would be filled with positivity. My focus would have been on the strengths of the Children with CP. What they could do instead of what they couldn't

Is it so difficult to understand why many of us feel inferior?

Is it so difficult to understand why those of us with disabilities fight so hard to be listened to? 

Is it so difficult to understand why we continue to fight so hard to be heard?

Those of us with disabilities face challenges every day. In my opinion, the biggest challenge we face is getting people to look beyond our disabilities and see us as the people we are.

Ugly Laws.

Google them.

Think about them.

 

EASTER DINNER

"What are we having for dinner on Easter?" the old woman asked.

"Easter is still days away. For someone so concerned about how much they weigh, you sure are fixated on food," came the reply.

The old woman chuckled to herself. It was true she did look forward to meals. Planning in her head what she'd eat. 

Although there were times she did not have much of an appetite 

During those periods, the old woman craved junk food/comfort food. Chocolate, Ben & Jerry's Cherry Garcia Ice cream, mashed potatoes, and Lucky Charms.

The old woman had learned that all the food cliches were true. She'd laughed at them before. She'd never understood why some people ate the way they did.

But now...

Food was a comfort to the old woman and nourishment for her body. 

A bite of warm mashed potatoes is like a hug. Food never judges or yells at you. Food never made you feel inadequate or ashamed. Food is/was there for you.

The old woman closed her eyes. 

She saw herself as a child watching her mother make Easter lamb cakes, sneaking a jellybean, popping it into her mouth when her mother turned her back. She remembered the year her mother had iced one of the lambs with chocolate icing. Omitting the coconut because no one really liked it. That lamb is forever known as The Black Sheep of the Family.

The old woman shut her eyes tighter, willing more memories to return. Her mind is like a movie screen. Her memories are the film. 

She's waiting in the car outside The Honey-Baked Ham Store for her mother to return with their Easter ham.

The old woman remembers celebrating Easter at her brother's house after her mother's death. She tries hard but can't remember what was served. She knows the meal was delicious. She also knows it was not ham. No one really liked eating ham on Easter except her mother. The old woman loved the rum and cokes her brother made for her. 

Two years in a row, her mother had given her a hollow chocolate egg with a yellow marshmallow Peep inside. The old woman loved to see the egg cracked open. One little Peep, so cute, waiting patiently inside the egg. The old woman vowed she would never share this memory with another living soul. She was well over forty when her mother had given her that egg. She feared that people would think that the old woman had lost all of her faculties.

When the old woman opened her eyes, tears were rolling down her cheeks. Happy tears. She'd traveled home for Easter.

She was fixated, but not on food.

The old woman was fixated on memories.

 

 

THE WOMAN IN THE MIRROR

 

I posted the following on Facebook in 2019. It still holds true two years later. I will turn sixty-four next month. I still want pink hair. I have at least six Frida Kahlo tee shirts. I hear you. Mom. ("Oh, for heaven's sake.)

I got a badly needed haircut today. When I looked in the mirror to check out my new 'do. I was taken aback. Who was that woman staring back at me with the salt and pepper (mostly salt, very little pepper) gray hair? 

That couldn't be me. The woman staring back at me would not be contemplating dying a small portion of her hair pink, purple, or blue to celebrate turning 62 next month. 

That woman would be horrified. The woman staring back at me would not be considering spending the last of her Amazon gift card on a Frida Kahlo tee shirt. .That woman would probably buy something practical...Like wool socks. Well, maybe not socks, but she would buy something useful.

The woman who looked back at me was my mom. When did this happen? Wasn't it only a few years ago that I graduated from Washington University with my MSW,?

Not only do I look like my mom. I sound like her too. I hear myself saying things my mom said that I swore would never come out-out of my mouth. Such as," Getting older is no fun. Wait until you're in your sixties."

My mom might not understand me wanting to dye my hair pink or spending money on a Frida Kahlo tee shirt. That is because she worked hard.  She didn't spend money on frivolous things.

I look like my mom. I sound like her too. I am blessed.  My mother was the best example of strength, determination, and independence I could have asked for.

 Every year I say this on the anniversary of her death. 

Rest in peace Mom. I love you. I hope that I have made you proud.

AM I A BURDEN TO YOU?

There is something I've been wondering.

I guess I'll ask you now.

Am I a burden to you?

You dress me, wipe my butt and feed me.

That must get old.

Am I a burden to you? 

I did not choose to have CP.

It sucks being dependent.

(Well, except for my power chair.)

God made that choice.

He didn't ask me.

Am I a burden to you?

I apologize for bothering you.

I  ask too many questions.

I don't mean to.

I am human. 

I screw up.

Am I a burden to you?

I can be no one else.

I am me.

Am I a burden to you? 

We are not friends.

You provide my care/

Am I a burden to you?

This is no pity party.

No bid for attention.

Just something I had to mention.

Am I a burden to you?

DID I EVER TELL YOU ABOUT THE TIME?

Did I ever tell you about the time I rolled over a nun's foot?  

It was right after I started taking classes at Fontbonne University. The sister was dressed old school. She looked about one-hundred years old. I was backing up. The whole incident is a horrifying blur.  All I remember is one minute I was backing up with no one behind me (or so I thought.) The next thing I knew I'd run over the scary, stern-faced nun's foot.

I was not Catholic, but I was positive rolling over a nun's foot meant " send her straight to Hell." I heard God giving the order in my head.  When I called one of my friends, later that day, he thought the entire incident was hilarious. He tried to convince me I was not going to end up in Hell. I was not buying it.

Where was that rearview mirror that my cousin had given me and attached to the side of my chair? Oh, I  remember now, I'd sideswiped it off. Don't ask me how. That's a blur too

I kept repeating over and over how sorry I was. The sister, even though I'm sure her foot was throbbing, ended up consoling me. After that, she always smiled whenever she saw me. We had a special connection. Who knew bonding over a foot was possible?

Did I ever tell you about the time I was late for prayer?. 

The secretary in student services assisted me to the bathroom during the day. The restroom was across the hall from her office. There is no other way to say it. Mrs. Crowe( the sweetest, funniest lady on the planet) forgot me. She just got busy. By the time she remembered, I had two minutes to get to class. 

I got to the door of the classroom. Sister Agnes saw me and opened the door. It was clear to me I had missed the prayer. My class in special education had started. I was not getting a teaching degree. I took the class because I wanted to have the experience of having a nun as my instructor. 

I was taught by the best, Sister Anges Cecile. That day when I missed the prayer before class, however, Sister Agnes was not happy with me. She didn't say anything, but the look she gave me told me to never let it happen again. I didn't.

Did I ever tell you about the time?

I went to mass in the chapel with  Mrs.Crowe. No one else was wanted to go with her. I was as always eager to go. The all-marble chapel was calming and peaceful. I received ashes for the first time on Ash Wednesday in the chapel at Fontbonne. It was a beautiful experience. The priest, Father Jack, always took the time to talk to us.

Did I ever tell you about the time?

We partied at Fontbonne the night before graduation. It was after a mass for the graduating class. I did a lot of chair-dancing that night. Kool And The Gang's song Celebration takes me right back to that night in May of 1981. A right celebrating our achievements, friendships, and the beginning of the next chapter of our lives.

Did I ever tell you about the time?

Sister Agnes Cecile and Sister Rose-Genevieve came for lunch. I'd grown very fond of Sister Agnes Cecile. I will always be grateful to her for being the one who told me that if I struggled with math the way I'd described to her I probably had a learning disability. I was not just stupid.

I begged my mom to let me invite Sister Agnes to lunch. She told me we were not Catholic. I told her how cool Sister Agnes was. Mom frantically called a friend who was Catholic. The conversation was something like this./ She wants to have nuns over for lunch. What do I serve? Mom's friend assured her that nuns were just like anyone else. She could serve them whatever she'd serve to anyone coming over for lunch.

The big day arrived. Sister Agness and her friend, Sister Rose Genevieve came. We sat in the living room. My mom served Fritos (We were so classy in the '80s) and wine before lunch. When she asked the sisters if they'd like some wine Sister Anges looked at me and asked, "Are you having wine?' I told her that I was. "Well then, I think we'll have some too." Sister Agness replied.

There was a Nigerian princess in my class at Fontbonne. She was also at GWB with me too. Sister Agnes told stories of when her father came to visit her in all of his "regalia." It was a fun and memorable afternoon.

Sister Agness and I stayed in contact for many years. My time at Fontbonne holds a special place in my heart. The faculty and students accepted me. Nuns weren't to be feared. They were kind, caring people.. Sister Agnes and the rest of the Sisters of St. Joseph of Carondelet taught me our religions were more similar than they were different.

When I think of Fontboone I think of how a home I felt. The friends I made. One word describes Fontbonne University.

Acceptance.