SHE'S CRAZY IN A GOOD WAY

What can I say?
Tiffany's crazy.

In a good way.

She makes me laugh while providing my care.

Very few can compare.

Tiffany's crazy.

In a good way.

We make videos and send them.

Just to say hey.

Do you think we'll be on Tic Toc someday?

Tiffany'scrazy.

In a good way.

We go out to eat

Applebees is a fave.

About the appetizer platter.

Tiffany raves.

    Yup.Tiffany's crazy.

In a good way.

She makes a mean pasta dish.

It's far out.

She even brings me Brussels sprouts.

Tiffany's crazy.

In a good way.

She's taken me bowling.

To Lone Elk Park too,.

Tiffany showed off her driving skills.

It was quite a thrill.

Tiffany's crazy.

In a good way.

The road was narrow.

As we let an elk family pass.

Good thing we didn't run out of gas.

Tiffany's crazy

In a good way.

My rhyme's almost done.

It's been fun/

I've no more to say.

I appreciate you Tiffany.

You're crazy.

In a good way.

 

THERE WAS LAUGHTER

 Yesterday was an awesome day.  There was laughter here.  The staff talked to me. We joked around. I watched part of a  Medea movie with my staff. No one was negative toward me. The vibe in the house was chill. I was happy.

Wanna know what the coolest part of the day was? I went bowling!

 In college, I was on a bowling team of adults with disabilities. We bowled every Sunday at the old Arnea bowling alley in the city of  St. Louis. I loved it. It was the one thing I could do with minimal assistance. (Well, I can play the slots by myself since they got rid of that pesky arm and replaced it with a button.  I digress.)  

I used another player's bowling. ramp. I had a powder blue bowling ball with my name on it. We had a bowling banquet every year. I won several trophies.

I bowled a few times last year. I did not bowl during the winter. I hope i can go bowling more often now that spring has arrived. The weather is gorgeous.

I am fortunate to be a client of this agency. If I lived in a nursing home I would not be able to go bowling. In case you are interested I bowled two games. My score was 102 in the first game. I got three strikes.  My score in the second game was 91. No strikes in that game. It's all in how you position the ramp. I appreciate that bowling alleys have ramps available now.

My dad was a bowler. It's something we have in common. I wish he could have seen me bowl. I feel a connection to him when I am bowling.

I got a Greek salad from Panera on the way home. A perfect way to cap off the day. Thank you, Niejsa for a great day!

HEY MOM! THE DANCING PEEPS ARE ON

My mom died fourteen years ago today on March 30, 2010. Her funeral was the day before Easter. I wanted to write a post about her. I did not know what more I could write about her than I already had. 

The things I considered about writing could have been happier. I wanted to write a funny post about my mom about Easter. A post about how I could exasperate her in a good way. At least I like to think so.

I love marshmallow Peeps. Not so much eating them.  Marshmello and pure sugar. Now there's a combo for you. They are so cute. I would buy them just for their cuteness factor. I would eat them after Easter when they were hard, still sweet, but like a rock.

They made a hollow chocolate egg with a Peep inside for one year and one year only. I saw it in the store and begged my mom (What's that? My age at the time is not important to this post. . How rude! Moving on.) to buy one for me. She did. 

The egg stayed in the box on the kitchen table for a week Every day I would look at it as though I was expecting the hollow chocolate egg to break free of the box, roll onto the kitchen table causing the egg to crack open allowing the yellow Peep to hop out and tweet out a  "Happy Easter" to mom and me.

Nothing so dramatic happened. On Easter Mom cracked open the egg. The little yellow peep looked so cute sitting in the bottom half of the egg. I ate the top of the egg. I didn't want to eat the bottom half with the Peep in it. Eventually, I did.

I loved the Marshmallow Peeps. I really loved the Dancing Peeps commercial circa 1999.

I got a kick out of this commercial. I would giggle and call my mom with urgency causing her to think something was wrong. She'd make it into the room as the commercial was ending. "Oh for heaven's sake. Is that what you called me in here for? I am in the middle of cooking dinner." If we were watching TV together she would shake her head when the commercial came on. Mom liked the Peeps commercial and the cute Peeps candy. Or maybe she enjoyed seeing me get such joy out of all of it,

"Hey Mom! The Dancing Peeps Are On."

Rest in peace, Mom. I love you.

Have a great Easter everyone. Get some Peeps.

DEAR AMAZON PRIME

What has happened to our relationship?  What have I done wrong? I have been a loyal customer of Amazon for years. 

I received my first birthday gift card many years ago  I opened an account even though  I was nervous. (You must understand that being nervous about trying new things is how I am. It's my MO. A risk taker I'm not.)

A friend gifted me Prime several years ago. One yearly payment and BOOM not only could I shop online, but i could watch movies and get free shipping. Prime was so cool. You were so cool, Amazon. 

The coolest thing?  I could do everything myself with just a tap of the keyboard mouse on my laptop. I was independent. No assistance was required. You did that for me Amazon. I have cerebral palsy so, for me, that meant everything.

When I realized that I could get Prime for half the monthly price of fifteen dollars because I received government assistance. I jumped (pun intended) at the opportunity. Prime for under eight dollars a month? I was in.

Everything was fine until late last year when you began charging me the full monthly rate for Prime instead of the EBT rate. I was certain this was just a one-time error. that could be easily fixed. It was. Customer service refunded. me the overcharged amount. The end. Oh, Amazon how wrong you are.

That was just the beginning of lengthy online chats. I was told the problem was fixed time and time again. I was told I would never be overcharged again. Month after month it kept happening. 

Customer service told me I had two accounts and someone was using my information to get Prime for free. I was told to get a new debit card. I am waiting for my new one to arrive. After canceling my card customer service told me, after double-checking, that I did NOT have two accounts. ( I had been telling your customer service agents this over and over.) and everything would be okay. I would receive Prime at a reduced rate once I got my new debit card.

How could you do this to me Amazon? I thought we were friends. I have always been loyal to you. Everyone keeps telling me to give you up. To not add me new debit card to my account. How can I give you up when you've given me the gift of independence?  When packages arrive it's like Christmas You have brought me so much joy. 

I love your movies. (Thanks for the Frida Kahlo movie. I have watched it on Prime before. I am so happy it is available again.)

I am frustrated. I still love you Amazon. I am not ready to give up on you.

Sincerely,

Your loyal customer in STL.

 

CHOICES

Yesterday was Legislative Day in Missouri. I did not make the trip to the state capitol in Jefferson City to be part of a rally or speak to legislators. That's just not my thing. If it is yours, great. That does not mean I don't care. I do. 

People with disabilities deserve choices. Those of us living in group homes and on Medicaid have limited choices.

We need improvements in what is considered accessible housing.  This means wider doorways as well as wider hallways.  Any ramp should be a gradual slope/ I have tried to go up or down ramps at some houses and if someone had not assisted me my chair would have fallen off the ramp.

All ramps should be checked to make sure that they meet safety standards. There needed to be more room for me to drive my chair around in some of the houses I have visited. 

Wheelchairs and lifts need a lot of space. Accessible housing should be accessible to everyone.

I know this is discriminatory. I know this will never happen. I am going to say it anyway. I believe no one under the age of twenty-five should be hired to be a caregiver. They are too self-involved. They walk with me (sometimes ahead of me) with their head down looking at their phone.

I have experienced negativity from my caregivers I have experienced a lot of positivity. The positive experience outweighs the negative experiences. Mutual respect between a client and their caregiver is a must. Listening to one another is important as well if the relationship is to a healthy and lasting one.

I have been deemed unemployable by the State of Missouri on three separate occasions. I have been told by the state of Missouri that no one would pay me for the skills I have. I am a writer. I have an MSW. While I have no interest in going out and working, (I held a part-time teaching position for sixteen years) more work-from-home jobs are needed. 

Since COVID-19, many people are working from home. Why can't I? Why did the State just bail out on me?  My vocational rehabilitation office could have tried harder. M counselor should have tried harder. I refuse to be humiliated like that again. The third time was definitely not the charm for me.

If I remain in my situation and my Sara Lift breaks down Medicaid will not pay for it to be replaced. The lift I am currently using was donated.

If I go to a long-term care facility and my powerchair breaks down there is a strong possibility that Medicaid will not pay for a replacement powerchair. Leaving me dependent on others to get around. Mobility aids are essential to someone with a disability.  

I have waited months for my chair to be serviced. I waited months for my new chair to arrive.  Mobility aides should be regularly serviced. Without my mobility aids my quality of life would be nil. The fear of losing one or both of my mobility aids keeps me awake at night

Because I need skilled nursing care retirement communities won't accept me. Retirement communities should offer skilled nursing care. The really nice LTCs either do not offer skilled nursing at all or the Medicaid beds go to a resident already living there, or there are long waiting lists for the beds available.

When I speak of LTC I do not mean warehousing. I visited the Medicaid floor in a nursing home where the entire floor reeked of urine. The residents were not engaged. They looked like zombies. That is warehousing. That is inhumane

.

Medicaid nursing home residents deserve their own rooms. Don't penalize us based on our ability to pay. Yeah, I know, that's how the world works. That's why my dream of living out my days in a private room, with an adjoining patio where I could sit waiting for my three o'clock cocktail will never happen. I require too much care. It would cost the State of Missouri too much money for this to happen.

A Queen Bee (as in the movie) Golden Girl on Wheels. That would be so rad.

There is no point in a Legislative Day. There is no point in rallying for our rights. I love my country. I have, however, lost faith in our government both at the federal and state level. Until our lawmakers are directly affected by all the issues that I have mentioned. Nothing will change for people with disabilities.

To those in power. To those who pass bills into law, i have one final message. Wake up. Make changes now. In the blink of an eye, it could be you. Give us the choices that you would want.

WE ARE MORE THAN OUR BOOBS AND BUTTS

Yesterday, on International Women's Day, I was invited to Hooters Restaurant to celebrate my housemate's birthday.  I had so many feelings and emotions about being invited. I am the only female in this house. I like my housemates and their staff. We all get along very well. A lot better than I had ever thought we would.

I am embarrassed to admit that the first thing out of my mouth was not a thank you for inviting me as it should have been. The first thing out of my mouth was, "That restaurant degrades and objectifies women." It's not my finest movement. I regret saying it. I thought I could go. But in the end, after seeing. Hooter's Facebook page with a young woman who had the honor of being "Miss March" I just could not see myself going. Even the name is offensive to me.

Being a waitress is hard work. Maybe they are there to pay for college or graduate school. If I had a daughter I would want more for her than the honor of being Miss March. I would not be happy with her waitressing in short shorts and shirts where her boobs are partially exposed even if it was just a temporary situation. What happened to dignity and self-respect?  

Women have worked too hard to show that we are more than just boobs and butts. We have brains. We have ideas. We have opinions. We can do tough jobs,

Women work twice as hard to overcome stereotypes. Women with disabilities have to prove themselves worthy and equal over and over again. A restaurant like Hooters objectifies women. What messages does it send to young men?

I keep wondering what Ruth Bader Ginsburg would say. What advice would she give me?

I decided not to go because my housemate deserves to spend his birthday however he chooses. I do not want to be a Debbie Downer. I do not want to ruin his celebration. This is his party. This is his day. I truly hope he has a great time

I will step down from my soapbox now.

SPIRITS HAVING FLOWN

Artist Mitchell Toy

When Stephen Hawking died in 2018 the disabled community was in an uproar over this drawing of him entering Heaven. Another realm in the universe. Whatever your belief is. His body ceased to function. His spirit moved on.

The disabled community deemed this drawing ablest. I am not sure how anyone could negatively perceive this drawing I think this drawing is beautiful. 

I was embarrassed in 2018 to be part of a community that would condemn it and the artist who drew it.

When I die I won't have  CP anymore. I will not need caregivers/ I will not need my powerchair. I will not need my Sara Lift. I will not need to sleep in a hospital bed. I won't even need glasses.  I will be able to leave all of the people and things that assisted me in my Earthly life behind. That is what this drawing represents. Freedom. 

Ablest? I don't know. Ten people could look at this drawing and give ten different interpretations of it. If someone chooses to see this drawing negatively then I guess it is ablest. For me personally, this drawing represents positivity and hope. 

Allison V Thompkins, Ph.D. https://www.allisonvthompkins.com/blog/ writes about disability and spirituality. In addition, she holds a Ph.D. in Economics and has authored her first book on disability and spirituality. She has cerebral palsy and loves the color purple. 

She believes that we are spirits.  So much more than our disabled body. So much more than our outward appearance. I like this idea. It gives me hope as well.  If only people could get past our disabilities and the equipment that assists us. If only people would take the time to see our spirits while we are here on Earth. Well, that would be too awesome for words.

My mom and I used to have discussions about this. She would say, "I know my body is going to die. My body is just a shell. What happens to me?"  She would then point to her chest for added emphasis. Now she knows. I hope she is doing all the things she never got to do in life. The biggie? Travel to Germany.

I consider myself a spiritual person. I  want to learn more about spirituality and how it relates to disability. I want to improve my relationship with God.  

Dr. Thompkins lives her life with Faith. My Faith is a little shaky.  Not my belief in God. I know He is with me. It's my faith in people that's shaky.

I pray for unity 

I pray for positivity.

I pray for acceptance 

I hope that people will begin to see our spirits. Not just our disabilities. 

Cuz there is a whole lot more to me than spastic limbs and a powerchair.

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.

 

I WANT TO BE A SENIOR SWIFTIE

I saw a story online that made my day.

Primrose Retirement Community in Sedalia, MO. 

That's where I want to go.

I want to be a Senior Swiftie.

The Senior Swifties support Travis and the Chiefs. 

Just like their team, these fans have their own swag. 

Dancin to Swag Surfin.

I want to be a Senior Swiftie.

They have the moves. 

They know how to rock.

Don't believe me?

Click on the link below and check them out.

I want to be a Senior Swiftie.

The Chiefs will beat the Ravens today in Baltimore.

With the Senior Swities rooting for them.

How can they not score?

I want to be a Senior Swiftie.

My chair dance moves might not be perfect.

But I'd try my best.

Do I have to audition?
Put me to the test.

I want to be a Senior Swiftie.

I Googled. I researched.

To Primrose Retirement Community I must go.

I want to see this fun place.

ROAD TRIP!!!
I want to meet the Senior Swities more than you'll ever know.

I want to be a Senior Swiftie.

I'd move there in a heartbeat.

If they would accept me.

Sadly, I can't live independently.

Even assisted living won't do.

Skilled nursing is not an option there. 

That is just not fair.

I want to be a Senior Swiftie.

My rhyme is almost done.

The Chiefs are #1

Yes, they'll do great.

Then it's on to Superbowl LVIII

With the Senior Swifties, and me (A Senior Swiftie at heart.)

Rooting them on to victory.

I want to be a Senior Swiftie.

This post is dedicated to the Senior Swifties at the Primrose Retirement Community in Sedalia, Missouri.

Sources:

https://people.com/senior-swifties-show-off-swag-dance-routine-8549555?utm_campaign=people&utm_content=likeshop&utm_medium=social&utm_source=instagram&fbclid=IwAR2mcKGvWQhAjZPY4e29WSzm7f8dMdCZ45Jc9mTprMqJGzG04IbKaaKAzJA  

https://primroseretirement.com/sedalia-missouri-senior-living-communities/

 

LIKE A THIEF IN THE NIGHT

 Alzheimer's disease is like a thief in the night that robs a person of their mind bit by bit until they no longer remember the things and the loved ones that once mattered to them. 

This thief of a disease runs in my family It claimed my two aunts as well as two of my uncles. I often wonder if my father would have been a victim of it had he lived longer. I wonder if I will. I have been tested. I do not have it. Although, in my opinion, I have symptoms. I cannot remember things. I get confused. I forget where I am supposed to go,  I guess I should add the word sometimes to all of my "symptoms."

I blame everything on stress. What if it's not? I begin to worry in the evening who the overnight staff is going to be. A group home is not like a nursing home where I could ask who was coming on shift. In a group home. As long as someone shows up,and my needs are met, why do I have to know ahead of time?

What if my call button is not working? Knowing the staff member's name makes me feel better. To be fair there are times when the evening staff does not know who is working the overnight shift. I try not to ask anymore. When I kept asking, people would sometimes say I was acting like someone with sundowners. I can't explain it but my fears  and anxieties seem to be worse at night

Sundowners is one of the. symptoms of Alzheimer's My mom would sleep all day. She'd wake up at four o'clock in the afternoon and want breakfast. The caregiver and I would do our best to convince her that it was almost time for dinner. Often times we were successful. However, many times we were not. 

When I was a resident in the nursing home one of the other residents with sundowners cornered me so I was unable to pass her, kicked me. and yelled at me. This went on for several minutes with me trying to pass her. I finally had to call for help. She had me trapped. She was not going to let me pass her.

I worry about not being able to talk at all. It is getting more difficult for me to speak loudly and clearly. When I do my chest hurts. I sometimes have to push to get my words out. People tell me I talk too much. People are always asking me to repeat myself. What if the day comes when I am not able to talk at all?  This is by far my number one concern as I get older.'

My hearing is not what it was. Neither is my vision. I hope to put off having cataract surgery for another year. I am scared to death to have it. Come on you already knew I was a wimp. I just confirmed it for you. I guess my question is how routine of a surgery is it for someone with spastic CP? All of my questions will be answered in March.

I make a mess when I eat. (That's it. That's why no one ever asked me out. Came close though. What? A lady never tells.) 

I don't drive my power chair as well as I used to. The truth is I never drove it very well. (I heard you agreeing as I typed that sentence.) I remember going for walks all over the place by myself. I miss those days. I miss the person that I used to be.

I began this post by saying that Alzheimer's robs a  person of their mind. That's true. Aging in general is a thief. We can't stop it. We have no other choice but to accept it.

People lose patience with you as you get older.

Bette Davis was right when she said, "Growing old ain"t for s sissies."  Permit me a little poetic license. "Growing old with a disability ain't for sissies."

Disabled peeps, can I get an amen?

  

PEACE

Love

Acceptance

Inclusion

Equality

Education

Understanding

Diversity

Justice

Kindness

Helping 

Inclusion

Non-judgemental 

Involvement

Curiosity

Open-mindedness

These words are positive. If we practice them we will be on the road to living in peace. I fail all the time. So will you. What matters is that I keep trying.

Today we remember Dr. Martin Luther King Jr.'s belief in all the words I  have listed. He believed the day would come when we would all live in peace.

Our country is in turmoil. Our world is a scary place. 

Tragedies occur in our world every day.

It's not political. It is humanity

A list of words.

The first steps toward Peace.

"Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it."  Dr. Martin Luther King Jr

 “People fail to get along because they fear each other; they fear each other because they don’t know each other; they don’t know each other because they have not communicated with each other.”   Dr. `Martin Luther King Jr.

.

EVERYTHING'S GONNA BE OKAY

I had a meltdown.

The floodgates opened.

All my worries.

All my fears.

Came tumbling out.

In the form of tears.

It felt good to cry.

Everything's gonna be okay.

Changes big or small are hard for me.

Even moving to the front you see.

I like it back here.

In my luxurious cave.

Yes, you'll have to rearrange.

Everything's gonna be okay.

Guys are moving in soon.

Oh me. Oh my.

I guess I'll give it a try

Everything is gonna be okay.

Someone from the office came to talk to me.

They put my mind at ease.

I realized how nice it might be.

Everything's gonna be okay.

My new housemates might be nervous too.

There is something that I can do.

Make them feel welcome.

This is your home too.

Everything's gonna be okay.

Thank you to my staff.

To the administration too

This is my chance.

I want to make this work.

I  really do.

Everything's gonna be okay.

Trust. 

Have faith.

Let God handle it.

I have to believe.

Everything's gonna be okay.