I FELL DOWN THE RABBIT HOLE INTRODUCTION

Hit The Rewind Button

My mom loved to tell people the story of my birth. She told a salesperson at Macy's once. I was mortified. In my head, I was imploring her to stop. We were just there to buy Christmas socks for my brother. How had an innocent trip to the mall gone wrong?  

Imagine having a guy you liked over for dinner only to have your mom launch into her story. All I heard was, "Joanne was born at six and a half months. She was so small the hospital didn't weigh her when she was born. She looked like a spider monkey, all arms and legs."What an icebreaker. MOM STOP!!   

HIT THE REWIND BUTTON!

Wouldn't it be awesome if life had a rewind button?  I'd give anything to have the ability to press a button and go back in time and fix my most embarrassing moments as well as my mistakes.  How far back? Probably birth. I  have screwed up a lot.

For as long as I can remember every new experience has been like falling down a rabbit hole leaving me confused and asking myself the question how did I get here?  Just like Alice in Wonderland.  My wonderland is having been born a spastic quad. The most severe form of cerebral palsy. It has been an amazing, scary, confusing, and wild ride. It has been my life. 

I want to leave a positive legacy. I have a  lot to say. The problem is I feel like no one is listening 

I decided to write my memoir in a series of entries.  A mini journal of significant events in my life. Beginning on April 19, 1957, the day I was born. Clearly a momentous occasion. At least in my own mind anyway.

In the late fifties, the Americans With Disabilities Act was not even a glimmer in someone's eye. I want to share my story of what my life was like growing up without the ADA. I want to examine how I came to live first in a nursing home. now in a group. I want to show what my life was/is like. My hope is that a young person with a disability reading my memoir entries will realize how fortunate they are to have the ADA. My hope is that they will learn from my mistakes.

Sit back and relax as I get ready to push the rewind button on my life. Get ready to fall down the rabbit hole with me.

STAY STRONG

So now, we're on lockdown. Thirty days or ten to twelve weeks. The exact number does not matter A lockdown is a lockdown.

The staff here has their CCL identification along with a letter in case they are stopped trying to come to work. The SC stocked up on groceries yesterday. We are prepared. I am safe.

I want to thank the staff at Jaywood again for being brave and coming in to care for my housemates and me. Jaywood needs good, caring staff more now more than ever. We depend on our staff. They make it possible for us to live our lives. Be proud. That's huge.

This is not a time for dimension or complaining. This lockdown is a time to support each other. It is time for all of us to be united.

I hope people all of us learn to be kinder and more compassionate. as a result of this pandemic.  I hope all of us learn to be more helpful. Caring for and about other people does not always have to be about a paycheck. It is the right thing to do.

I miss my family. I miss My friends. I miss Happy Hour at NHC.  I am thankful for the Internet, Social Media, and Netflix. 

We will get through this. Stay strong everyone. Be safe. 

Peace out.

QUARANTINED

Our world has been shut down by a virus named COVID-19. It sounds like the plot of a Si-Fi movie except it's not,. It is our reality for the foreseeable future. Anyone else going stir-crazy? I am.

I want to take this opportunity to express my appreciation to the Jaywood staff. They have families. They could be at home with them. Instead, they sacrifice time with there families to come to  Jaywood to care for us during this uncertain time.

My routine is the same. Watch movies, Start and then delate the same blog topic approximately ten times finally realizing it makes no sense. I give up on blogging for the day. I check all of my social media accounts as well as my email. I  may read or play Word Tornado after taking my morning siesta. The majority of the time Netflix wins. I fall asleep watching Netflix too. That signifies that I am officially old. When did that happen?

Seeing my friends and family on Facebook brings me comfort. I can message them if I am lonely. Knowing that we are all in this together makes it a little less scary for me,

I  know that Jaywood is where I need to be right now. I am safer living here. I feel blessed.

I am praying for the staff and residents of all Long-Term Care Facilities. I know how much they miss seeing their family and friends.

My advice is to eat whatever you want.  Isolation is hard enough. In case you didn't get the memo diets have been suspended too.

Stay safe everyone. Wash your hands. Check on the elderly. Help when you can.

Peace out.

SEE ME

Mardi Gras fun at the nursing home

All of my life my inner voice has been screaming for people to SEE ME!!!. I am much more than my disability

I don't know how to embrace my spastic cerebral palsy. It's a part of me, like my brown eyes. I have tried to imagine what my life might have been like without it. I can't. Life with cerebral palsy is all I know  

There are perks to having cerebral palsy. I usually don't have to wait in long lines. This was definitely a perk when we visited The Disney Theme Parks. When I traveled I boarded the plane first. We were upgraded to the first-class section a few times. And, of course, the biggest perk is better parking spots.

 Society loves to label people. Labels make our society feel better. Society understands that I had been labeled "severely disabled." Society did not expect me to achieve very much.

The first time I realized I had been given the label "severely disabled." (I attended the public school for the physically disabled for thirteen years. I needed help with almost everything and I had not figured it out? How dense was I?) was when my mom and I were waiting in a vocational rehabilitation office to inquire about getting assistance in purchasing an accessible van. The counselor had not come in yet. I saw a file on the desk with my name on it. The words "severely disabled " were written on it. 

I freaked out saying, "Mom, that's not what I am is it?"

"No, that's just something they wrote down for their records. It doesn't mean anything," she said. 

I knew it did. It meant that society would always view me as different and make assumptions and judgments about me. It meant my inner voice would spend the rest of my life screaming to be heard.  While I continued to try to make people see me for the person I am.

I am not mentally challenged. Unfortunately, when many people see me that is what they think. 

I am an intelligent, funny, and creative woman who enjoys hanging out with friends. I like sushi, watching people sing karaoke, going to the movies, and eating out, Hurricanes, and Margaritas are my favorite cocktails.

The most difficult thing about living here is the lack of privacy.  That and the fact that when people here meet me for the first time most assume I'm mentally challenged. 
There goes my inner voice again. 

SEE ME.