JOY

Santa's Lost Elf

 When life gets me down in 2022...

I will choose joy.

I will think of friends and family. Happy times.

I will choose joy.

I will create characters in my head. I will write the stories that I'd want to read. About places, I  want to visit. 

I will choose joy.

I will ignore people who yell at me, put me in my place, or treat me like a task that they have to complete. 

I will choose joy.

I will blast music and sing when life is stressful. Just like Reba, I'm a survivor.

I will choose joy. 

I will continue on my spiritual journey. Religions are different. Yet they are the same.  

Love is the answer.

I will choose joy.

I love seaweed. I eat weird things. I love counting calories. That does not mean I don't pig out every once in a while. I also love cupcakes.  Jilly's are the bomb. Everything is in moderation.

I will choose joy.

I am tired of the way my life has been. Advocating. Striving to make my situation better. I have had enough.

 Whatever 2022 brings...

Choose joy.

Happy New Year.

Seaweed...Yum

My Thanksgiving Jilly's Cupcake

I WANT TO BE WANTED

 Shhh. Don't tell anyone. My guilty pleasure is watching Dr. Phil show videos on Youtube. His guests fall into one of three categories for me. 

1. Those who are genuinely sincere and in need of his help.

 2. Those who are looking for their 15 minutes of fame. 

3. The guests that have me screaming, "Are you for real?" 

And, who can forget that egregious error in judgment Dr. Phil made when he told the girlfriend of a disabled man that she could be his girlfriend or his caregiver, but that she could not be both. There are numerous videos of inter-abled couples that debunk this myth, Dr. Phil. Take my advice, and check them out.

There are two things that Dr. Phil tells many of his guests that resonate with me. When he explains them to one of his guests I feel like he is speaking to me too.

Anger stems from, hurt, fear, and frustration. That is certainly true of me. I have been afraid since moving here. Fear of being reported and fear of new caregivers. fear that they won't listen. Fear of doing something wrong, fear that I will be treated as a body and not a person with thoughts and feelings. The worst thing caregiver can do is tell me that they don't care. I guess I should not speak out, but many just care about their job. I know this is the truth cuz they have told me.  

I appreciate that my needs are met. They provide good physical care. 

Hurt by the way I am viewed and spoken to by some of my caregivers.

Frustrated because my caregivers do not listen to me. They tell me not to tell them how to do their jobs. 

If I cry I am called a crybaby.According to Dt. Phill crying is not a sign of weakness. It is a sign that someone has been strong and that they are tired. They have endured. They have reached their 

  

I toured a second nursing home. It is a city in itself. The facility offers everything I could ask for. The bathroom is still a concern. I will have to use a Hoyer lift which scares me.

The staff was warm and welcoming. The place was bright, cheerful, and buzzing with activity.     The semi-private rooms were surprisingly large.

I am going to return in a week or two to spend some time at the facility. I am ninety-five percent sure that this facility is the right place for me. If all works out I plan on moving after the first of the year.  I will keep you posted.

No one ever wanted me here. I need to be somewhere where people want me around. A place where I can talk to the staff freely. A place where I am appreciated, not constantly told how much I get on the staff's nerves.

Some of the staff have told me that they did not care if I stayed or not. They did not care what I did. I get that, but did they have to tell me to my face?

I was blamed for staff leaving. I was blamed for causing most of the discord in this house. I was yelled at and cursed at more than I have ever been. I began to get migraines again. I can't take it anymore.

I was not your typical group home client. That's why this living situation did not work for me. The staff did the best they could. I did not do enough research before moving here. The failure is on me.

Please send positive vibes my way.  I pray that my concerns will be resolved. I am looking forward to the coming year. I look forward to beginning this new chapter of my life,.

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A CP TEACHING MOMENT

I am in elementary school. The loud unexpected buzzing of the fire alarm causes me to jump.  My heart is in my throat. I feel anxious, as well as a  little sick to my stomach,  from my startle response. We are taken out into the hall to the nearest exit. It was just a drill. 

In 1963 buses were not equipped with lifts. A board was put down. Those who could not walk were carried off the bus and put into our chairs. The bus attendant let the board fall with a loud bang.  I was on the bus waiting for it, holding my ears. Holding my made me feel better. Still trying to figure out why. Holding my ears did not stop me from startling. It just reinforced my nerd reputation. 
The bus attendant would unexpectedly exclaim, "POW!" He'd laugh hysterically when I jumped. I was confused. Didn't adults know better?

There was a short time in school when the milk cartons were triangular with a hole in the middle for the straw.  Any empty carton, when smashed, made a loud pop. My classmates loved popping the cartons. They also loved seeing me startle when they did. An added bonus. As you can imagine. During that time lunch ceased to be a favorite part of my day.

My family loved the Fourth of July.
 I regret that my startle response kept them from enjoying fireworks like other families did. 
Fast forward to November of 2021. I am sitting at the kitchen table deeply engrossed in a Youtube video on my Kindle. I am, minding my own business, BOO!  I jump, my heart going into my throat, anxiety, making me feel nauseous. I look up. I ask the offender, "Why would you do that?"
They tell someone here, "I scared her ass."

When I try to explain that my heart jumps, etc. I am told they were just messing with me. They tell me I'm still living. They tell me I am carrying it too far. 

They are adults. Shouldn't they know better? The little girl inside of me still wants to know.

According to Microsoft Bing, although the Moro reflex typically lasts from birth to 3 to 6 months of age, this response generally remains into adulthood for those with cerebral palsy, due to the neurological differences present in those living with the condition.

I remember that day in my child psych class when I learned about the Moro reflex and CP. There was a name for it. It was not my fault. It was a part of my CP.

If I startle in front of you please do not make a big deal of it. It's nothing you did. I would love it if you would pretend you did not notice it.

Please do not laugh. I am embarrassed enough.

Please do not make me startle on purpose for your own amusement. Doing so is mean-spirited. It is ablest as well.

Show empathy.

Show compassion.

How would you feel if someone made you Jump, and then laughed? 

Be kind.

Be understanding.

Be respectful.

Oh, and one more thing, ask me questions. If you want to know something about me or My CP. Be polite.  Start a dialogue. Maybe people will understand.

HAPPY THANKSMASYEAR

(And All Holidays In-Between)

As soon as the ghosts and goblins disappeared, I could have sworn I heard the faint voices of carolers singing "We Wish You a Merry Christmas." For me, the true sign that the holiday season has officially begun is the holiday Daisy Sour cream commercial. What exactly is a dollop, anyway?

Turkeys are pricey this year. That's okay. Give me a turkey burger, a piece of pumpkin pie, and a libation or two, and all will be good with me. The most important thing is being connected to my family and friends via technology. 

I'll be lost in the ghosts of Thanksgiving's past. The good times. All the delicious food, was my mom's last Thanksgiving when we raised our glasses to her. There was also the time when mom forgot the side dishes in the oven, probably because I called her for something minor, and the kitchen became a smokey haze, but I digress.

I am thankful for the roof over my head, the food on my table, and the care I receive. There are many not as fortunate as I am/

Thanksgiving weekend of 2016 I watched my first telenovela. If I am lucky I'll find another one. Maybe, a new Korean drama? I know I will "travel" somewhere.

Christmas will be much the same as Thanksgiving: quiet. I encourage you to remember those elderly and disabled folks living in long-term care and group homes. Send cards, call, visit. Consider asking a nursing home if you could adopt a resident for the holidays. I knew many residents who were alone on holidays. I know they will appreciate a thoughtful gesture. I know they like being remembered.

The most important thing—and I write this in my posts every year—is to keep your word if you tell someone living in a nursing home that you will visit them. You may not mean to, but you let them down when you don't. I know life gets in the way. Just do the best that you can.

I will ring in 2022 wearing bifocals. 

There will be changes here. I pray the transition will go smoothly.

Usually, in my New Year's post, I list my goals as a writer for the coming year. I have been promised so many things related to my writing, that I am disappointed and disillusioned that these promises were not kept. I will always write posts for this blog, but I am tired of getting my hopes up for nothing. 

I will write for myself. I hope that I write posts that interest you. too. I am done with trying to prove I am good enough, I write well. If people can't see that, that's their problem, not mine. My writing may be depressing but it's my reality.  I write my feelings. 

There is something in my posts that you can relate to.

January 2, 2022, I am giving up cocktails until Easter, April 16th. I will continue my exploration of veganism in the new year as well.

HAPPY THANKSMAS YEAR,  and all holidays in between, from this golden girl on wheels.

LIFE'S A DREAM

I wish I could move away. Move to a place where no one had been briefed about me, and no one has an opinion about me. A place where no one read my ISP. A place where no one knows anything about me. Not even my name until I told them.

A fresh start. An adventure. A clean slate.  Just me and a friend, for moral support, doubling as my PCA. That is the part I would not tell her until she agreed to go with me. Sneaky, aren't I?

I've watched YouTube videos of people with disabilities who've moved across the country, away from family and friends, to start a new chapter in their lives. I admire their strength, their fearlessness, and most of all their courage. They face the unknown with excitement rather than fear.

I've researched. Southern California I love to research and learn. (Oops, my bad, I forgot to mention that I'd want to live in Sherman Oaks or Studio City.)

Southern California has an independent living center. I would reach out to them to find an accessible apartment, PCA services, and accessible transportation services for someone on government assistance. I'd ask if I could work for the center from home. I'd be a great asset as a writer for their newsletter.  https://www.scrs-ilc.org/?fbclid=IwAR0_zeA39N4Jg-VuKmsLII9IRm6hBrO7uUdgkuHjo3372-G3PfhyAGxZZ3A

I chose Southern California because it's a beautiful place with palm trees, warm weather, and every once in a while, maybe I'd get to see the ocean. I have amazing California memories. The Santa Monica Pier and The Farmer's Market are two of my favorites. I am sure both have changed a lot since I visited them many years ago. 

I am too old. (It's a fact.  I am getting bifocals in about three weeks. Nothing screams elderly more than bifocals.) I am too fearful. Fear has kept me from doing so many things. I am/was my own worst enemy.

To start fresh in warm, sunny California would be the best.

All of you reading this are probably shaking your heads thinking I am totally insane. You are wondering why I am wasting a post about a dream that will never become a reality? In all honesty, I can't believe I am writing a post that's so personal to me. I did not overthink it. I just began writing. This post is the end result. 

I know there is no way I can move anywhere (except back to a nursing home.) much less Southern California. It's the planning, dreaming, and researching that keep me going during difficult days.

Then there is that little voice in my head that tells me, "probably not, but then again..." I should tell that little voice to shut up. I don't. I kinda like it. 

Dreams provide me an escape. That little voice in my head?  That's hope,

WHERE DOES IT END?

 When you are on government assistance the government owns you. The government decides everything from the amount of EBT you receive to whether or not you meet the criteria to receive a mobility aid.

 All group homes, in the State of Missouri, fall under the umbrella of the Department of Mental Health. 

I have resigned myself to the fact that everyone here knows my business, discusses my behavior, and this agency has the right to give me thirty days' notice if my behavior doesn't comply. I  have accepted that. I  am working hard. This placement has to work for me.

I am always told to be e the bigger person. I am older than the staff here. I am tired. It's getting old. I am  doing  my best to get along with the staff here 

My housemates show me what courage is on daily basis. Living in this group home has shown me how blessed I am. I hope my housemates know that they can always count on me to be their advocate.

I have a DNR. The Department of Mental Health will not allow my DNR to be enforced in this house. This means that if I stop breathing in this house the staff is required to perform CPR whether I want it or not. Outside of this house, my DNR will be honored.

I will visit my doctor. We will discuss a form revoking my DVR in this house. If I do not comply by signing the form. I will be given thirty days' notice by this agency. I shake my head. I ask myself, "Where does it end?"

I am tired of having care. Being pulled on, Using the Sara lift.  It's necessary. It's getting old. I am tired

Life is a gift. I have had an awesome one. I am ready for the stress of needing caregivers to be over. That is God's decision. He must still have something for me to learn. He must have something left for me to do.

The staff works hard. I am thankful for their care. Many go above and beyond for their clients.

As for the DMH I have one question.

Where does it end?

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JUST ONE MORE DAY

 With my mom, In our house, on a  typical Saturday. We'd go shopping. Then out to eat. For dessert? Ted Drews. What else? I'd say all of the things I have wanted to say for almost twelve years. The main thing I would tell her is how much I  love her.

With Lucie's warm little body snuggled against my hip letting me know everything is  okay as I fall asleep

With my family at Christmas. I miss our traditions, I know life goes on, but I guess I am stuck. The holidays are lonely here. The Pasta House Salad, ravioli, Bailey's with Fireball, Excitement as the presents are unwrapped, Laughter. I miss it all.

With the Buder Library staff. Quanda, The Amy's, and Ladonna. One more Friday sitting behind the desk at the information desk waiting for Leo and his wife to come in. Thank you, Jim, for giving me the chance. His wife had CP you see. He understood.

With the staff and residents of the nursing home before all my staff friends moved on in their life's journey. I would give anything for one more dinner of Chinese take-out, sometimes with wine, with my resident friends. We were a family, but I was too stupid to realize it then.'

Just one more day. Just one more. Please!

Time moves forward, not backward.

It does not matter how much I plead.

I have to deal with what is. 

My memories, however, are the key.

I feel safe. I feel happy. I feel loved.

For one more day.

'

REALLY?

World CP Day passed without a word from me. I saw no point in writing a post. What more could I say? The message hasn't changed. Show your support. Wear green. Raise awareness. Blah, blah, blah.

I have never fit into the disabled community. My ideas are the opposite of the norm. I blame this on the fact that most of my accomplishments were achieved before the passage of the ADA. 

I achieved everything with the support of my mom, I just did what I had to do to continue my education after graduating high school. I knew the schools were not obligated to have resources for me. When I entered grad school my first advisor came right out and said the school did not want me.  He told me he would rather see me fail than help me. I got my MSW despite him. (Vocational rehabilitation deemed me unemployable. I created a part-time teaching position for myself. I did what I had to do to have a job.)

If a statement like that was made by a faculty member today there would be a lawsuit, mega news coverage, and the person who is screaming at the top of their lungs how their rights to higher education had been violated. They would be demanding to get the assistance they deserved. I knew I deserved nothing. I appreciated whatever assistance I was given. 

I am not saying you should not advocate for yourself to get what you need. By all, means do so. But society owes you nothing. Employees of a business do not have to stop what they are doing to assist you in filling out forms or reading said forms to you. Bringing someone with you is being independent. You are not disrupting a business. You are handling your needs yourself. 

I am disabled. I am ashamed of the new generation of disability. They are so ready to shout ableism at the drop of a hat. A month or so ago I was called a lateral ableist by another disabled person on social media. First I googled it. I am old. We did not have those terms in my day. I had ableist views and I shared them. I did not know my views were ableist.

It's an oxymoron when people with disabilities say they are just like everyone else but the only thing they talk about are their disabilities. That's getting old and boring. Your disability is not who you are. It's a part of you. The same way you're eye color is. I voiced my opinion on social media. I got blasted for it.

When I meet someone I am interested in finding out if we share common interests. Books, music, movies, TV shows, and art, are interests. It does not matter whether they have a disability or not. Those are the things that matter to me. If a person has a question and is respectful I am happy to talk about my CP. I am not saying I do not ever talk about your disability. Just balance it out.

The new generation of disabled needs to remember those who came before them. Those people with disabilities fought so that today most children with disabilities are mainstreamed.  They can have productive lives because of those who fought for basic human rights.\

I urge anyone reading this to watch the Netflix documentary Crip Camp to see the true heroes of the disability rights movement. 

I have not written a post. I did not have anything worthwhile to say. But I do. I  like many others, accomplished our goals when we had few rights. Society did not accept us. 

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The disabled of today do not have a clue, I do not want to identify with a community that does not respect different points of view. 

A lateral ableist. Really?

 

THE DEAL-BREAKER

I visited a lovely nursing home. It had top-notch amenities. As beautiful as the facility was I won't be moving in. It's, not the administrator's fault. It's not the staff's s fault. It's Medicaid's. It's our legislators. It's is the fault of the architects who design long-term care facilities.

Those of us on government assistance are penalized because we are either elderly, disabled, or both.

In 2014 I moved into a long-term care facility I was writing my column for the WEW. I was being paid seventy dollars a month. When my funds ran out, I had no other option but to go on Medicaid.

 I was told I could no longer get paid for my column. The reason? I was on Medicaid. I guess you are not supposed to want to be productive if you reside in a nursing home. Medicaid keeps us at the poverty level. Did the seventy dollars really make that much of a difference to Medicaid in the grand scheme of things?  I doubt it. It did, however, mean everything to me. 

Those of us with disabilities should be allowed to work if we choose to. Our address should not matter. We need more jobs that people with disabilities can do from home.

People who are not on government assistance tell me all the time that there is no shame in receiving government assistance. I should be grateful. I am. However, people not receiving government assistance don't have a clue.

Being on government assistance when you are living in long-term care means sharing a room, It means privacy curtains, it means small bathrooms. It could mean using a bathroom down the hall if the one in the room is not large enough to accommodate the resident's needs. And, if your roommate has visitors, having to find someplace to go until they leave. 

I have one question for the lawmakers of this country. Those of you how passed the legislation regarding Medicaid and nursing homes. "Would you want to live that way?"

Comfort, privacy, and dignity should not be based on a person's ability to pay.  

You might be laughing at this statement now, but when it happens to you, or to someone in your family, you will feel totally different. No one is exempt from the possibility of being on Medicaid. No one is exempt from becoming elderly and disabled.

All nursing homes need large bathrooms with doors. Privacy curtains suck.  Manual chairs, powerchairs, walkers, and lifts require a lot of space. Add an aide to the mix and It can be a really tight squeeze. The need for extra space needs to be factored in when a facility is being designed

Every resident deserves to have a private room. People spend their final years in nursing homes. they might be sick, they might be dying. They need to have their personal things around them. They should not have to face the end of their time on this Earth living in half a room with a stranger.

Wake up, architects and legislators. Privacy and dignity in nursing homes matter. Privacy and dignity should not only be available to those who can pay for them.

That was the deal-breaker.

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THREE IS MY LUCKY NUMBER

 August 31, 2018. Three years ago. I moved here with the goal of making my life better life. 

August 31, 2021, I toured the most amazing nursing home. Yes, if things work out the way I hope they will, I am moving.

I need people to talk to. I need people taking care of me who care about me. I need the staff who takes care of me to conform to my needs. I should not have to conform to their needs. 

I am always getting on the staff's nerves here. I know this is true because they have told me. I have been told what I need to change about myself. I am tired of trying. People here do not accept me for the awesome person I am.

I am going to spend some time at the nursing home before finalizing my decision. I am eighty percent sure this facility is the right place for me. The staff is more willing to work out bathroom logistics. The facility itself? It looks like a freakin' hotel. I can't believe they have Medicaid beds.'

Their activity calendar is jam-packed. Happy Hour is every Wednesday. A wine cart twice a week. They even take residents on outings. If you request to be taken somewhere their transportation will take you. The nursing home offers lots of food choices at mealtimes.

A dog lives there too.

The big deck and the small patios mean there are a plethora of spots for quiet/alone time.

I hope I am never again told by a staff member that they are not required to talk to me. Told I'm extra, or that I do too much. I am too old for all that. I want peace.

Do you want to know the most amazing thing I noticed during the tour?  Not a single staff member was talking/ on or staring at their cellphone while working.

I haven't felt this excited about making a change.....Wait, I have never been this excited about a life change.

I deserve to enjoy the rest of my life. Stay tuned/ 

NO MAN IS AN ISLAND

 Connections. Conversation. Every human being needs to feel connected. Included. Those of us with disabilities are no different. In fact, it is even more important for us. 

No matter how hard we may try. We will always be on the outside looking in screaming, "see me," but many people won't hear us. 

We do not crave attention We just do not want to be overlooked or left out. We are proud of our accomplishments. We want to share our successes with everyone.

People with disabilities fight to be included. We fight to have our voices heard every day. We.need to know that we are viewed as more than our disability.

It sucks being needy. Dependant. Our need for validation, reassurance that we are good enough stems from a lifetime of being told. negative things about ourselves. Tell us positive things. That would  be much more beneficial  to us 

For many of us, the internet connects us to the outside world. Our friends, family. Since COVID we have relied on social media more than ever. When service is interrupted we become depressed We may not know how to pass the time. Computer technology is what many of us rely on as an outlet for our creativity.

People do not want to really get to know us. It takes a little extra time and effort. If we talk about the things that are important to us too often we turn people off. They become tired of hearing our stories

When we meet someone who is willing to look past our disability something as mundane as a trip to the supermarket can be a blast.

Change is hard on us. Change is a fact of life. We  may need assistance in dealing with major life changes/

People are not required to have conversations. with us. Becoming too attached to someone is not a good idea. When the person moves on we are the ones that are hurt.

What's the best thing you can do for those of us with disabilities? Treat us as equals. Talk to us. Connect with us.

No man is an island. People need people.

ROLL THE VIDEOTAPE

 

If you are a regular reader of this blog you know that in 2015 I was a part of the spoken word Mother's Day program Listen to Your Mother. My essay about my mom was chosen. I would have to read it out loud in front of an audience in an auditorium. Gasp!

Me. The person who shook so badly when she spoke in front of the congregation of her church about why installing an elevator in the church was so important to the church's accessibility. She could hardly get her words out.

Me.The same person who submitted an essay to LTYM. Why?  Because she just wanted the experience of submitting. There was no way she'd be chosen. She knew that for certain.

I told my mom's story via videotape. Making the video was a little challenging for me. I had to try to speak as clearly as I could and not speak too fast, and take deep breaths. I did not want to sound like I was gasping for breath at the end of a sentence. It was a challenge, but I would not change anything. I appreciated that the producers of  LTYM  St. Louis allowed me to record my speech. LTYM was a dream come true for me. Six years later I am still writing about the experience. It was one of the best days of my life.

I have another goal, dream, crazy idea.  I want to apply to be a TEDx Talk. speaker. 

I have watched many TEDx talks on YouTube. I have reviewed the submission process. That's not what's stopping me from proceeding.

My voice is.

 In the six years since LTYM, my speaking voice has gotten worse. I speak softly. I do not know how I would sound on the video. Would people watching it be able to understand me? Would I be allowed to have my talk videotaped?

If  I have all of these questions and issues, realistically I should abandon the idea. I know that's what you are thinking. I am wondering the same thing. The idea keeps popping up in my head. I can't seem to abandon it. 

My topic: How the use of labels has affected my life as a disabled person. More specifically, as a female with CP. The title of my talk is Labels: The Good, The Bad and The Ugly

I achieved the majority of my accomplishments in the Dark Ages., Translation. before the ADA was passed. Before the ADA life with a disability was an entirely different ballgame. Non-disabled people said anything they wanted to me.  Most of their comments were negative. People told me what I couldn't do, Instead of encouraging me to try.

 

\I will write my talk. Then decide if it's worthy of submitting. The video?  My mind has not gotten that far yet. If I see this through to the end making the video will be the most challenging part of the process.

Stay tuned...

    

IS INCLUSION A FARYTALE?

Image Courtesy Of Screen Rant

Disney has come a long way when it comes to princesses. It's not just Cinderella, Snow White, and Sleeping Beauty anymore. Disney now has princesses of all races and ethnicities. 

One billion people, or 15% of the world’s population, experience some form of disability. 93 million are children. 

 

Yet those of us with disabilities do not have a Disney princess to represent us. Why?.

Are those of us with disabilities not pretty enough? Are we not perfect enough? Everyone has flaws. Even a princess. Are the folks at Disney afraid that a princess with a disability could not t execute the royal wave properly?  

Having a princess with a disability may not fit the traditional model of who a Disney princess is. I challenge the folks at Disney to expand their princess model by thinking outside the box. A princess in a power chair. a princess using a walker, crutches, wearing a brace on her leg, or a princess who is deaf. Just imagine it.  Just one Disney princess with a disability could make all the difference to a child with a disability.

A Disney princess is strong, courageous, and kind. She not only possesses outer beauty but inner beauty as well which is even more important. She has faced challenges in her life. She has persevered. I was wrong. A Disney princess with a disability would fit the princess model quite well.

So Mickey, how about it? It's 2021. The time has come for the larges minority group to be represented.

Don't make inclusion at Disney just a fairytale.

Disability references in Disney and Pixar films.

 https://newzhook.com/story/disabled-animation-characters-disney-pixar-films-disabled/?fbclid=IwAR3OC5lv7TbPYpWw9dgebyMTuMouz1rDlsjq1Ew4mQs2p_R-JsVVvkEbNkE

This is a great beginning. let's hope a princess with a disability be the star of her own animated film soon. 

Here's my story about a princess with a disability.  https://busyworldofbiancabear.blogspot.com/p/pri.html

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THE ROAD TO NOWHERRE

Cul-de-sac. A route leading nowhere. 

No  Beginning. No end.

I can't get lost.

I can't go far.

On this ride to nowhere.

    What I can do is imagine.

While my chair's motor hums.

I zoom past houses at breakneck speed.

Feeling free.

Feeling alive.

(Five miles per hour.)

Stories, characters, this post.

All take shape in my head.

I keep riding.

I pass the same person mowing their lawn.

 (Approximately five times.) 

Time for my ride to end. 

I don't want the neighbors to think I am crazy.

The road to nowhere does in fact lead somewhere.

It leads to creativity.

PUT THE BIRD IN ITS CAGE

My glasses were lost. My glasses were found. They were hiding in plain sight. Until they were found I wore a pair that I had purchased over seven years ago when I lived in my house. The glasses did not fit very well anymore, but they were Vera Wang's so that was okay. On sale, half price, a steal!

Before I started wearing glasses at the age of three, my eyes were a hot mess. Trust me on this. I saw the home movies. 

I am nearsighted, my eyes cross. and my eyes don't fuse meaning I do not see with both eyes at the same time. My eyes flick from one to the other. I used to notice it all the time. The only time I notice it now is when I am extremely tired. The same is true for my crossed eyes. Thank goodness I got glasses. 

When I was little my ophthalmologist, Doctor Ludie was a kindly, old man (I was a kid. All adults looked ancient.) with salt and pepper gray hair, a mustache, and glasses. (Oh wait, I might be describing the character of  Richard from Gilmore Girls. I don't remember which seasons, but he had a mustache at one point. Does anyone else love GG? I hope there is another season. I want Luke and Lorelai to have a baby. Oops, sorry, got lost in my own stream of consciousness. My bad)

Doctor Ludie would perform a typical eye exam. Then he'd do a test designed to check my alternating vision. I had to look through weird-looking binoculars. On one lens was a picture of a bird. On the other lens was a picture of its cage. A person without alternating vision could move the binoculars until the bird was in its cage.

No matter how hard I tried I could not get that stupid bird in its cage. This humiliating part of my eye exam went on for years.

I got a pill bottle filled with M & M's when my exam was finished. Today Doctor Ludie would probably be accused of encouraging children to take drugs by asking, "Are you ready for your pills?"

I could say the whole bird in the cage thing scarred me for life  It's a sweet childhood memory of a kind man. His kind of ophthalmology practice does not exist anymore.  

fun Fact: The parking lot of the building in which Doctor Ludie's office was located was a great place to ride bikes, or in my case trikes, on warm summer evenings in the '60s. My mom bent over, holding on to me as I peddled as fast as I could, trying to keep up with the girl from across the street.

The 60's. The era of people-based health care. Carefree evenings riding bikes. The best.

CAVIAR DREAMS ON A TUNA FISH BUDGET

 I blame the shrimp. When I was four years old my parents took me to a wedding reception. According to my mom, that is when I ate shrimp for the first time.

Picture It. (I've always wanted to write that in one of my posts) My four-year-old self is wearing. a Polly Flinders smocked dress. White ankle socks, with my name monogrammed on them, and black patent leather shoes, cover my wide fat little feet. This fashionista in training is scarfing down shrimp. 

Chipmunk cheeks filled with shrimp while dressed in the trendiest fashion of the day for little girls. I must have been a vision. (My mom would have never allowed me to have chipmunk cheeks full of shrimp. The word scarfing was most assuredly not in her vocabulary. Made you laugh though, didn't I?)

Fast forward to that Christmas when I asked for a pair of shiny white (Wait for it) go-go boots. (My Goldie Hawn period?) The fact that I couldn't stand up very well in them didn't matter  I looked so cool. 

Gloria Vanderbilt jeans, Lunch at the Ritz earrings, Dooney and Burke purses. Designer labels were everything. I am embarrassed to admit. that I begged my mom for a Gucci purse. She bought it for me When the strap on the purse broke, my mom super-glued it. I refused to use the purse. (Can you say spoiled?) No worries  My mom took over the purse

I told my mom. that someday I would spend the warm months in St. Louis and the cold months in California. I loved our California vacations. I had no idea how I was going to achieve this goal. Didn't matter that I was only working part-time, earning the minimum wage. Clearly, I was delusional.

Now that I am on Medicaid, EBT, and live in a group home I am grateful that I can pay my rent. I am grateful for the times my brother brought me a cupcake from Jilly's. Receiving government assistance kinda put things in perspective. I am not a  diva after all.

I still have caviar dreams on my tuna fish budget. That's okay.

FYI  I tasted caviar at a friend's house many years ago. I loved it!! 

THE BEST 4TH EVER!!!!

 Well, America's 245th  birthday is history. And, the noise from illegal personal fireworks was worse than ever. UGH!! When will people learn? I prayed for all of the animals who were terrified by all the loud booms.

 How could it have been my best fourth of July even if the noise was so bad you ask?  

I spent part of the afternoon with my friend Jenny and my new friends Eileen and her daughter Rose. Eileen and I have been Facebook friends for a while. This was our first meeting in person.

I heard stories of Eileen and Jenny's college days. I wished I had gone to college with them, but I was born too early.

There was a lot of laughter. I got to be goofy.  I have found my tribe. Jenny and Eileen share my love of classic sitcoms. I am now watching one of Eileen's favorite Korean dramas (soap operas) online. There is nothing I love better than an international soap opera. I get to experience another culture and get lost in the drama. at the same time.

Sitting on the patio,, listening to Eileen and Jenny's stories, I forgot about the times that I get yelled at. Forgot about the times that no one listens. Forgot about the people who want me to change the way I am. Jenny and Eileen accepted me just as I am. I felt normal. I forgot about my power chair, my CP. I was not nervous or self-conscious. I usually am when I meet someone for the first time. My mind races, trying to think of intelligent things to say. 

I was myself. 

I.belonged. 

Yeah, the noise was outta control that night. I, however, was engrossed in my new Korean drama. What's the noise of fireworks compared to a mall collapsing? Add to that guilt over a family member dying in the mall collapse. I mean, come on, there is nothing better.

Did I mention that Eileen can get all the Lucky Charms she wants?  Did I mention Jenny is Paul Mccartney's number one fan? I dIdn't?

I see interviews in their future.

Get ready ladies.

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IT IS NOT EASY

You do not want to be on Medicaid or Food stamps but you are. By the time your necessities are paid for. There is little left. 

It is not easy.

You were grateful to have received stimulus checks. you paid your dental bills, You need a new cell phone, laptop, and clothes. The extra money will be put to good use.

It is not easy.

You wish you could reimburse family and friends for everything they have done (and continue to do) for you. You know that saying thank you is not enough. It's the best you can do. Asking for help from other people.  It is not easy.

When the government is in your life they know everything about you. Everything from your interests to whether you sleep with your door open or closed. Anything may be asked at your ISP meeting.  No question is off-limits. If you decline to answer you might be labeled evasive./ You remember being called evasive by a caseworker for the State of Missouri while you were still living in your house in 2014. You learned the consequences of refusing to answer a caseworker's questions. 

It's not easy.

A trainee has to watch while you are being given a shower. Next time they will be the ones showering you. Modesty/privacy is a thing of the past. You may have just met them. They see everything. They know everything about you.  It's necessary.  It's appreciated.

It's not easy.

You make decisions. You make appointments. You get scared. You cancel. You are awash in embarrassment. What a wuss you are.

It's not easy.

You are told you have a talent. You are good at what you do. You're not paid for using your talent. You must not be that good. It's okay though. If you earn too much you will lose your government assistance. The government wants to keep you at the poverty level. What's up with that?  

It's not easy.

People are curious. People ask questions. They are unsure how to approach you. The hairstylist speaks to the person with you instead of directly to you. The dental hygienist takes control of the joystick of your chair, without asking, to maneuver your chair in the right spot You correct them. You educate. They understand.  

It's not easy. 

People you thought would be a part of your life forever are gone in a flash. They've moved on. You're stuck. You wish for one more day. 

It's not easy.

You hate fireworks. You startle. People may laugh. It's the hardest day of the year for you. 

It's not easy.

You watch movies. You dream of people and places you know you'll never see. 

It's not easy.

Having a disability is the easy part.

All the issues that occur as a result of that disability are not.

IT HAPPEND

I told my mom before she died not to get dementia. I did not want her to look at me and not know who I was. (It only happened one time. She caught herself and laughed. then she said my name.) I knew she had no control over whether or not she'd lose her memory. I asked the question anyway. In my opinion, losing your memory is the worst thing that can happen to someone.

My handwriting (printing) is not the best. It has gotten worse as I have gotten older. I love my laptop and tablet, but sometimes having to type things out is more trouble than it's worth. I rely heavily on my ability to remember things. If my memory goes I will be in BIG trouble.

It happened.

I woke up one morning convinced it was Sunday. It felt like a Sunday. The Golden Girls were on TV, a sure sign it was Sunday.

All day it was Sunday to me until late in the afternoon when I mentioned to a staff member something that is done on a Sunday. When the staff member tells me that it's Saturday. I am taken aback. I protest until  I check the day, date, and time on my tablet. It's indeed Saturday.

People have told me things I've said that I do not remember saying. Or, I remember a conversation in an entirely different way.

I have visions of being placed in the Alzheimer's unit of a nursing home.

I immediately wanted to call my physician to schedule an Alzheimer's screening. This disease that steals a person's mind runs in my family. I was filled with fear.

I was assured that what I experienced was most likely caused by stress. I did not have the beginning signs of Alzheimer's. 

Stress and Pressure. Picture a pressure cooker. Its valve is about to pop off. Hissing. Spewing its contents everywhere. Leaving a mess for others to clean up. I never want to feel that way again. Stress is a powerful negative feeling. 

My memory is so valuable to me. Stress can only affect me if I allow it to. I will not allow stress to take over my life.

I have so much that's positive in my life. This blog, my friends, I have the privilege of watching a movie to escape for a while.

Friends, blogging, and movies. My de-stressors.  

What are yours? 

Leave me a comment.

THE SPOON THEORY

People with disabilities might refuse their showers. Please do not be grossed out by that statement. I assure you our reasons have nothing to with a desire to be dirty

Using their lift, getting in their shower chair, being pulled and tugged on, during their shower, may just be too much for them some days. 

 If their disability causes tight muscles, their spasticity alone is enough to wear them out. Throw in the effects of the aging process, arthritis, changes in hearing and vision, That's a lot for anyone to deal with. For someone with a disability, it is ten times worse 

Disabled people are told to speak clearer, louder, and not to whine. Some people with disabilities take deep breaths and then push to get their words out. This takes tremendous effort. When they try to speak more clearly their words may come out louder than they anticipated. They are accused of yelling. In reality, they are just trying to be heard and understood. Exhausted, they have depleted all of their spoons by noon.

The spoon theory is a metaphor created by Christine Miserandino for the energy and ability limitations that disabled folks live with : Source: tps://girlonthegoblog.com/2019/10/20/better-understanding-disability-using-the-spoon-theory/#:~:text=The%20spoon%20theory%20is%20a%20metaphor%20created%20by,the%20day%20takes%20a%20certain%20number%20of%20spoons.

If a person's allotted spoons for the day are used up too quickly they must do something relaxing to replenish them.

I have only recently discovered this theory. It makes a lot of sense. The idea of spoons representing my energy, abilities, and limitations for a day serves as a great visual for me.

If I tell someone that I am tired or hurting the response I am usually given is to be told how much that person's hurting too. Thereby making my complaint seem trivial and not valid. 

A lot of my spoons are depleted trying to get the assistance I need while trying not to anger the other person by saying too much. 

Young people really do not care. They care about themselves, their lives, and that all-important cell phone. The Me Generation is a  selfish one.  They live in the moment. They feel to grasp that they too could become disabled. It only takes a moment for a life to irreparably altered. They too could be trying to conserve their spoons someday.

People don't understand. They don't want to understand. A non-disabled person has an infinite number of spoons. Disabled people, like myself, are not as lucky.

There are mornings when I want to just stay in bed. I don't want to go through the hassle of the day. The back and forth of being told not to tell someone how to do their job.  I do not give in to staying in bed. That is just not me.

Disabled people need to recharge. We do not need to explain. We need to conserve our spoons so that we can do the things that are important to us. We don't need to waste our daily spoons on stress and negativity.

EVIL SPELT BACKWARD

Someone told me that there are people who think I am evil. Some call me  "The Evil Lady." 

I acquired that name because I speak up. I advocate for myself. People don't like that. They don't like people who rock the boat. They want to do their job and go home.

I watched a Ted Talk given by Lizzie Valasquez titled What Defines You?

Lizzie was born with an undiagnosed syndrome. This syndrome affected her outward appearance and her vision, and as a result of the syndrome, she is unable to gain weight.

Lizzie was bullied. In high school, Someone posted a video of her on Youtube calling her "The ugliest woman in the world."

Lizzie took all the negativity that she had endured and turned it into something positive. She became an advocate for children who face bullying daily. She is fighting to get a law passed banning bullying in schools. She is grateful to the person who posted that video. That video led her to her career path, her calling.

While watching Lizzie's Teed Talk I started to think about what defines one. Was I going to allow the negative judgments made by people who do not really know me as well as the names people have called me to define me as a person?

Does my CP define me as a person?   No. my disability just is. It is not who I am.

Does my advocacy define me as a person? A little I guess. My goal has always been to make a difference. My efforts may have backfired, but my intentions were always to bring about a positive change.

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Does this blog define me as a person? YES!!! This blog is who I am. This blog is what I want to be remembered for.

I am not hurt by all the names I have been called anymore. I want to thank the people who've called me evil. You did me a favor. Because of you, I realized something that I had not thought of before.

Evil spelled backward turns into the word live. I am going to. live the best life  I can. I do not have to conform to make others happy.  Calling me negative names, and telling me negative things about myself serves no positive purpose. It only serves to heighten my depression. Negativity does not miraculously turn into positivity. 

I am so happy that I watched Lizzie's talk. I am going to picture the negative words people have said to me as a "ladder to my dreams."Thank you, Lizzie

I only get this one life. It's mine. No one else's. I want to be allowed to be myself. Warts and all.  I want to be happy I am flipping the negative word evil into the positive word Live. I can't think of a more positive word to end this post with.

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