Sunday, February 25, 2024


 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

Saturday, February 24, 2024


 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.



Friday, February 23, 2024



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.


Saturday, February 17, 2024


 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.
I  know it's good for you.

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\.

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.

Thursday, February 15, 2024



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.

Wednesday, February 14, 2024


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.

Friday, February 9, 2024


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.

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.

UCP meant friends, learning, and fun.
When she had to miss.
She was bummed.

Birthday, Christmas. She didn't care.
If there was a party.
She was there. 

Sitting outside on the patio.
Soakin' up rays.
The warmth of the sun on her face.
That's how she spent her summer days.

She'd people watch.
Hoping she'd spy a cute guy who'd say, "Hi."

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.