WHAT'S IT LIKE?

 "What's it like to walk?" I asked my mom this question out of the blue one day.

I have walked using crutches while someone held onto me. I walked using walkers  I waked in leg braces back and forth between parallel bars. That's not waking. I wanted to know what it felt like to make a conscious decision to get up. Have your brain send a message to your legs to move you from the family room to the kitchen.

My mom looked at me.  I knew she was thinking, "Where did this question come from? How do I answer it?

She thought for a moment."I don't know. I decide I want to do something in another room and I get up and begin walking. I don't think about it. It just happens." She ended with, "I guess I take it for granted."

Her answer has always made me wonder if the abe-bodied community ever stops to think how lucky they are as they go about their day or if they take what they can do without assistance for granted?

I imagine. 

I'm ready to get out of bed in the morning. I swing my legs over the side of my bed and stand up. I brush my teeth.  I wash my face. I get my clothes out of my closet I get dressed. I fix myself a light breakfast. I need to run errands. I am meeting a friend for lunch. I grab my keys, walk out to my car and I am on my way. Effortless. Independant. I feed myself without leaving a mess behind. I  use the toilet in complete privacy.  That evening, after fixing mysef dinner, I watch TV while planning my to-do list for the following day. I take a shower. I crawl into my bed. 

That's what a typical day would be like for me if  I did not have CP. Non-disabled people take so much for granted. What's it like?  Does any other person with a disability ever wonder about this?  Am I the only one?

Having CP taught me patience and compassion. CP taught me that we're more alike than we are different. CP taught me that I have value and was meant to be here. I am not here to inspire you. I am trying to make it through life one day at a time

There is one thing that I would change. I wish I'd had the privilege of being mainstreamed in grade school and high school. I'm sure mainstreaming would have been extremely beneficial for me both academically and socially.  Being mainstreamed.  What's it like?

I will never be a rah, rah look at me I overcame my disability.  Look, at what I've accomplished. I did not overcome anything. My CP gave me the drive and determination to do what I had to do to succeed.  Props to my mom too.

I have CP. I take nothing for granted. I will never stop wondering.

I AM NOT DISABLED

When you look at me what do you see?

My spastic limbs?

My powerchair?

If that's all you see you don't see me.

I am not disabled

CP is not who I am. It is what it is.

I did not choose it.

It chose me.

I am not disabled.

Do you see me as inferior?

Less than you?

Not equal to?

I am not disabled.

I make mistakes.

From them, I learn.

From them, I grow

I am not disabled.

I enjoy the same things you do.

Dinner, drinks, movies.

Bowling. (it's a sport)

Football. 

Scratch that.

I enjoy the Kelce Brothers.

Football, not so much.

I am not disabled. 

You are reading this thinking "She's lost her mind."

Quite the contrary.

My mind is where I shine.

I am not disabled.

Cuz in my head I'm the same as you.

And I've got no reason to be blue.

I am not disabled.

I can think. I create. I write.

That's how I express myself.

I am not disabled.

When you see me as I see you.

Really, truly, when  you do

You'll be so proud.

You'll shout it out loud.

She is not disabled

.

.

 

LAUGH AT ME

 All my life people have laughed at me. The kids in school laughed at my startle response. The girls in high school laughed because I was not boy-crazy One female classmate went as far as calling me a lesbian.

At thirteen I idolized Shirley Jones aka  Mrs Partridge of the Partridge Family. A lesbian? I had never heard the word. At thirteen I had no idea what it meant.

People laugh when they are nervous but  In my case, I believe people laugh out of ignorance because they don't understand something. In my case, that something is my CP. If they laugh at my voice, or my startle response that makes them feel superior to me. Cursing at me has the same effect. It makes them feel as though they are in control and that they have the upper hand

People are always trying to change me. Fix me. The message I get from all this is, "I  am not good enough the way I am." They have not actually said this. Very little happens to the other people. The people who are in control. I know the people who are in control don't care. They've told me many times.

People think it's funny. People think I'm funny. I am glad I gave them a good laugh. I am so happy they can relieve their stress by cursing at me. It does not feel good. It physically hurts. It's starting to affect my health. 

People need to listen. People need to slow down. People need to believe.

Sonny Bono wrote a song called Laugh at Me. He wrote it in the sixties. Sonny wore bobcat vests, a weird hairstyle, and wore bell bottoms. He was kicked out of his favorite restaurant. He had his nose broken in a fight. Because he looked different.  Because people didn't understand.

I wish I'd been a teenager in the sixties. The clothes were cooler. The music was cooler. I may have gotten the chance to tell Sonny Bono thank you. It's his favorite song.  It's mine too.

A CHER FAN WITH A HEART OF GOLD

Photo Credit: Diane May

I told my email buddy, Janet, that when she beat  Cancer I would interview her. I would title the interview The Ultimate Cher Fan. Sadly, what was supposed to be an interview has turned into a tribute. Janet lost her battle on the afternoon of April 30th. Just days after her sixtieth birthday on April 24th. She shared her birthday with Barbra Streisand  Fitting. Both are legends.

Janet has been a Cher fan Since the age of five. Starting like most of us by watching the Sonny and Cher show. Janet lived in NYC. Whenever Cher visited the Big Apple  Janet was there. She met  Cher numerous times. As well as many of those closest to Cher.

Janet was there for Cher and Chaz's book signings.  I never told her this but I am almost positive I saw her walking down the steps to her seat at the venue in STL. ( Circa The Farewell Tour) I saw a woman with dark curly hair wearing a denim jacket with Cher's face stitched on the back. It was gorgeous! 

Yes, Janet was the ultimate Cher fan. She was friends with fans from all over the world. She loved showing fellow fans around NYC when they came to town.  She took them to Serendipity3 for frozen hot chocolate, Cher's favorite place, and favorite drink since she was nineteen. Janet showed them the brownstone where Moonstruck was filmed. I heard she met Olympia Dukakis while there.

Janet was my friend. Proof you can be friends with someone even if you've never met them. She always remembered my birthday. She wished me a  Happy Birthday this year with a Cher birthday greeting. She was in pain. She was dying. She remembered. She read my blog without fail. Even the last post before this one. Commenting with a red heart.💓 

I will miss reading "Hugs from the Big Apple" at the end of her messages. I will miss her unwavering support of this blog.

My condolences to her family, friends, and my fellow Cher Crew

Janet was the ultimate fan. She was the ultimate friend. Janet did not have a Heart of Stone. Janet had a heart of gold.

Fly high, my friend. I changed the title of this post. I hope that's okay.