ATTENTION SHOPPERS : THERE' IS DANCING IN ASILE FIVE

 I know that my staff is not my friend. They are here to do a job. To meet my needs. That's it. They do not have to talk to me if they don't feel like talking. They can ignore me or tell me to leave them alone if I talk too much. 

My staff tells me that all I want is their attention. They are right. Sometimes I like to talk and joke around with my staff.  I appreciate the care they provide. I would not have a life without them. Like the clients that they serve, no two staff are alike.

On rare occasions, I have had staff who not only cared for my physical needs but also took an interest in me as a person. Staff who treated me like they would want to be treated. Not just a body. Not just a task they had to complete.

Kenyoia was one of those staff.  She had an upbeat attitude.  She enjoyed coming to work and caring for me. She told me, "If you look good you feel good." She would assist me in picking out nice clothes to wear. Not just fancy lounging pajamas. Clothes. I have tried to keep this up. It's true. When I look good I feel good. She even got me exercising a little.

We all know I  have difficulty navigating the ramp in the van. My powerchair tires look like they have been through combat. It takes several tries for me to successfully get in or out of the van. A lot of the staff gets frustrated. Kenyonia would just say, "Come on Grandma." She made a joke of it This took the pressure off of me. I knew I was screwing up.  She never called attention to it.

I am dying to go to Whole Foods Market. If Kenyonia still worked for this agency and at this house, I would ask her to take me...The main activity I enjoy is going vegan food shopping. Food shopping was one activity I loved doing with her. She knew about eating healthy. She allowed me to try new food. Most staff do not like to go food shopping with me because I like to take my time. I like to look at everything  

I am directionally challenged. I can lose the person I am shopping with, in a split second, when they turn a corner. I also forget that there may be people behind me when I stop to look at something. When this happened while shopping with Kenyonia I would hear, "Grandma where are you going? I would turn and see her dancing up the aisle I  was supposed to be in. I was embarrassed but secretly delighted by her behavior. Although we did get some strange looks from other customers.

I am grateful to still be living here. I am grateful for my staff. However, I do not have very many happy memories. I am just a girl who wants to have fun. Most of what I like to do centers around food. A  staff member doesn't have to be friends with a client to have fun with them. I don't like to go out a lot. I want to make more good memories when I do. '

Having Kenyona as my caregiver is a very good memory

NETFLIX AND CHILL

 If you've been a follower of this blog since my days in a nursing home you are probably aware that I volunteered for Voyce while I was a resident. I was interviewed about what it was like to live in LTC. These videos were used in training sessions at Voyce.

I attended conferences. I considered becoming an ombudsman, and I  wrote several articles about life in a nursing home. It was an honor to be affiliated with Voyce. I have awesome memories. I thank everyone at Voyce, especially Chen for allowing me such a great experience.

It has been suggested that I attend conferences, write, and advocate for others with developmental disabilities. I have been and will continue to be an advocate for people with disabilities via my writing. As for going to conferences, my feeling is I have been there. I have done that. I am done.

This agency stresses that we need to go out into the community. If I go out once or twice a week why is that not enough?   When do I get  to say, "I just want to Netflix and chill, read, write, and see my friends?"

I have been looking for work-from-home writing jobs. I had this crazy idea that I could be an obituary writer because of a listing I saw online. 

Tonight I hope to go to El Maguey for a Margarita and chips.

Tomorrow I am visiting The Humane Society to pet some puppies. I hope I do not embarrass myself by crying/ I love and miss dogs so much.

I am tired. Aging with spasticity sucks.

There are days when using my Sara lift tires me out.

I am almost sixty-seven years old. 

I just want to Netflix and chill.

  

 

WHAT'S ON THE MENU?

 

My friends and I were always ordering out when I was in the nursing home. (If we had the money, that is.)  

Someone would decide at lunch that they were not in the mood for the dinner menu choices. We knew that the receptionist had takeout menus at the front desk. That was all we needed to know.

"Let's get Chinese. How 'bout a pepperoni pizza? We had pizza last time we got takeout. I don't want pizza. There's a new Chinese place down the street with a cheap delivery fee. Let's order from there. I''ve got a bottle of wine. Wine? Now it's going to be a party."  Suddenly our lunch conversation wasn't dull.  Everyone was excitedly looking forward to dinner. 

A lot of times I skipped lunch. On a diet, you know. (Okay, you got me. Ice cream was served at two o'clock. Some days I indulged.)  On those days someone would come to my room to get my order and cash for my portion of the bill.

There were times when my resident friends and I would order takeout and eat it in the lobby Someone from the activities department would give us our food when it was delivered. If I got takeout with my tablemates in the dining room, One of my tablemates would wait in the lobby for our food to be delivered. A staff member would assist them in bringing our food upstairs to us in the dining room.

The dietary staff would bring plates, and utensils and help in whatever way they could so we could enjoy our dinner They even opened and poured the wine for us. One time a nurse opened and poured the wine for us. Shhh. Don't tell anyone

We finished our meal feeling stuffed, happy, and a little tipsy. All was good.

I miss those times. I miss those people. Nothing lasts forever

Every Friday, at three o'clock I stop for a second and remember Happy Hour. 

Food, friends, and fun. That's all you need.

I hope my memories never fade.

.

SUSHI

 Sushi from WasabI.Sushi.

Not the grocery store

Eating it with my friends.

When I told my friend I had eaten such from the store.

She recoiled in horror.

I thought Sushi was sushi.

I  soon learned how wrong I was.

Where had real sushi.

This delicacy been all my life?

Watching my friend eat ginger.

Ew.

I  know it's good for you.

but...

Gross!

Waiting until two p.m. to eat.

That's when my friend got to the nursing home.

Eating it in PT.

It was our secret.

I can still hear one of the PTs saying telling us.

 "You're all going to get food poisoning."

California rolls,

Philadelphia rolls.

Seaweed Salad\.

Heaven.

Not too much Wasabi

That stuff will clear your sinuses/

(I could use some today. I have a cold.)

When I eat sushi now

Even the immatation kind.

I remember my friends.

I remember the laughs

Good times. 

Good food.

Good memories.

JUMP, SHOUT, KNOCK YOURSELF OUT

 

I am a spastic quad. Meaning all four of my limbs are involved. I have the most severe type of cerebral palsy. I was born at six and a half months. My mom had been in bed bleeding for eight days before I was born. That's probably when the cerebral cortex of my brain was damaged causing my CP. 

The Moro reflex, commonly known as a “startle reflex,” which all babies are born with, goes away after birth. However, this reflex doesn’t completely disappear in individuals who have cerebral palsy, which can explain my heightened and “jumpy” responses to loud or unexpected stimuli. I startle more when I  am nervous.

When someone tells me to "be still" I try hard to comply. The reality is while trying to comply with their request I  startle more. This leads to them telling me how nervous I am making them.  Their comment makes me feel immensely guilty. I do not want to upset my staff. Nor do  I want to get hurt. 

When I startle not only do physically jump, my heart jumps too. Someone can tell me that I am fine. That I am not going to fall. If I feel off-balance standing on my lift or unsafe in any way. I will become upset. The fear of falling feels worse than actually hitting the ground. The feeling can be so intense that I feel sick to my stomach.

When I was young I was able to be lifted onto the exam table when I went to the doctor.  Exam tables are narrow. I always got the sensation and fear that I was going to roll right off the table. It may seem illogical to you. This fear was very real to me. I made sure someone stayed in the room with me until the doctor arrived.

Throughout my life, individuals have taken great pleasure in causing me to startle on purpose. It may be viewed as hilarious to them. It's cruel to take pleasure in causing someone else's discomfort.

My startle response is a part of me. The trick is not to let it upset me or my staff. They do the best they can the same as I do. The trick is to work together. Trust one another. Communicate effectively with one another. If both sides can do that my care will go smoothly.

HOLLY GOLIGHTLY AND THE BLUE BOX

 

Kerrie Hess illustration

I wrote a story for a friend when I was in the nursing home. The story was about a young woman who was proposed to in the middle of Tiffany & Co. in NYC. 

I have been obsessed with the famed jewelry store ever since hearing that Katie Couric celebrated her fiftieth birthday there. And, Audrey  Hepburn in the movie. Who doesn't love Holly Golightly?

I will never get to the Blue Box Cafe. Nor will I be gifted a blue box with a signature piece of Tiffany jewelry.inside/ That's okay. I can write this day however  I want. 

That's the awesome thing about being a writer. I am always making up characters in my head. plots for stories. It's fun. I make myself laugh too. Laughter is the best way to beat depression. If I  crack myself up while writing that is a good indicator that others will laugh when they read what I have written.

Whether you have a Valentine or a Galintine do something that makes you happy today My suggestion?.  Watch Breakfast at Tiffany's Imagine yourself wearing Holly's dark glasses. Smoking a cigarette in a cigarette holder and looking glam. Oops. Sorry. TMI. Got carried away.

Did you ever think to yourself what a poor shot Cupid is? His aim is off. He definitely needs to hone his skills with that bow and arrow.

Today, Valentine's Day 2024, who knows where I will be traveling to via one of my characters. Or, I might come up with a story in which I am the main character. I just might get that blue box after all. 

Happy Valentine's Day.

https://www.kerriehess.com/

https://www.instagram.com/kerriehessillustration/

https://www.facebook.com/search/top?q=kerrie%20hess%20illustration

KATHY

The Brightest Star in the Sky

She woke up every morning singing.

She could not wait for her day to begin

.She'd smile and laugh while groovin' to her favorite jams.

You could not be sad when she was around.

Kathy

If her staff was slow.

She'd let them know.

Calling "Hurry up."

She had places to go.

She had people to see.

She loved going to UCP.

Kathy

UCP meant friends, learning, and fun.

When she had to miss.

She was bummed.

Kathy

Birthday, Christmas. She didn't care.

If there was a party.

She was there. 

Kathy

Sitting outside on the patio.

Soakin' up rays.

The warmth of the sun on her face.

That's how she spent her summer days.

Kathy

She'd people watch.

Hoping she'd spy a cute guy who'd say, "Hi."
Kathy 

She's left this Earth.

She's become the brightest star in the sky

Shine bright. Do your best twinkle.

And know that you'll never be forgotten. 

Kathy.

 

JUST ZIP IT

 Why all the negativity about Taylor Swift supporting her boyfriend, Travis Kelce by attending Chiefs games?

Does it really hurt the game when the media shows Swit cheering and waving during a game? I've read stories of girls watching Chiefs games with their fathers and learning about the game because Swift is there. Fathers spending time with their daughters. That's a positive in my book.

As for Taylor Swift being a distraction.  Think of all the revenue her presence brings to the Chiefs and Kansas City. Swifties are attending games and spending money. Another positive.

Tayloe Swift was named  Time's Person of the Year in 2023 for her achievements in the arts. She won Album of the Year at the 2024 Grammy Awards. She is the fourth artist and the first woman to win Album of the Year three times.

Swift was also named Person of the Year in 2017 for urging women to speak out about sexual misconduct she is one of a few people to have been on the Time cover twice. she follows her own path. She follows her own vision.  All the ingredients of an outstanding role model for young girls and women. 

The world is a mess. Wars, hostages. The political environment in this country? I won't go there. We need positives to combat the negativity. The relationship between the pop star and the football player is a joy to watch. They glow. They blush. They hold hands. They kiss. They allow us to witness their romance while taking all the media attention in stride. They are so freakin' cute and normal.

If you are bothered by the media paying so much attention to Taylor Swift and Travis Kelce plead your case to the media. Don't spew negativity and ruin it for fans who get joy from watching them together. 

Don't be mean-spirited,

If you don't have anything positive to say...

Zip it.

Travis Kelce has played in three Super Bowl games. He has won two. According to People Magazine, The Super Bowl in Las Vegas is the, "Biggest game of my life." Superbowl LVIII will mark the first Superbowl game played in Las Vegas.

Let's Go Chiefs.

ONE FINGER TAPPING ONE KEY AT A TIME

"We are honored to have you write for us. Your voice needs. to be heard. What? Pay you? Oh no. We can't pay you. This assignment is on a  volunteer basis. Think of the exposure you will get by writing a column for us This could lead to a paid writing job for you."

Yeah right. Who were they kidding?

I began using an electric typewriter at seven to complete my assignments and keep up with my classmates in school. I did not start my writing career until I was in my forties.

I type with one finger. I tap one key at a time. it is a slow, sometimes laborious process. I am grateful I type as well as I do.

I have written for newsletters that focused on disability, and LTC. There was one instance when I was asked to write an article with the promise of being part of a class via Zoom. I was to help facilitate the class. I excitedly wrote my article, hit send, and heard nothing. 

Keep in mind that some of the agencies I wrote for assisted those of us with disabilities gain independence as well as employment.

I am one of those people who foolishly trusts and takes people at their word. Do people think I will forget what they told me?  This has happened to me time and time again over the years. I am tired of my skill as a writer being taken for granted, I need assistance with everything. Writing is the one thing in my life I don't need assistance with.  And, I am damn good at it.

I had not been teaching very long at the community college when I was asked by one of my students for help. The class had ended. I had a few minutes before my ride was due to pick me up. I worked with the student for a few minutes. Someone working in the computer lab came up to me as I was leaving for the day and asked, "Were you working with a student when you were off the clock?" I replied, "They asked for my help. I had the time so I helped them." I was told I was crazy. No one worked without getting paid. I never did it again.

The people who've asked me to write articles and promise to pay and then don't, forget that I am on limited funds. I am responsible for purchasing whatever I need or want. I can use a little extra money as well as anyone else. It is also about being valued. My time is valuable and the articles I write are valuable.  Anything I write is a little piece of me. 

I am grateful for everything I have. My new living arrangement is working out better than I thought it would. I am grateful. 

However, I want the work I do to be valued. I  love writing but it is time-consuming. It takes effort too. Vocational rehabilitation told me no one would pay me for my skills, I disagree. I am not going to write for free anymore.

The time I wrote for the West End Word was one of the happiest periods of my life. I wrote a monthly column for the WEW online. I was paid for each column. I made it into the print edition twice. I was a journalist. 

I will continue to write posts for this blog.

I hope that someday my writing will be valued again.