2018 IS MY YEAR

In few hours 2017 will be a memory. I was going to write a completely different blog post. I was going to do a personal inventory of my year. I was going to tell you how I have changed and grown this year as a person as well as a writer. What I still need to work on so that I can move forward with my life in a healthy way.

I've had a roommate for almost two weeks. It has been a huge adjustment for me. The thought of taking an inventory of my year and blogging about it was more than I could handle. I am happy to say that I am coping relatively well. 

In a few months, I will be leaving this facility. I still cannot believe a day that I thought would never come is getting closer. My profile is in the system. I have chosen the area I want to live in. I am waiting to hear, who will support my care. I am told it is a long, slow process. Being granted approval by the state was the difficult part. I  am waiting to learn who I will be working with. I am excited and scared at the same time. 

That is what a new year is about. .Tomorrow all of us begin a new chapter in our lives. A chance to do better. A chance for a fresh start. I  am so grateful that God is giving me my life back. The thought of living in a house, having my own room and feeling normal again brings tears to my eyes.

My goals for 2018 are to begin writing my monthly column for the West End Word again.

I am going write more positive blog posts. I enjoy learning about people. I hope to do more interview posts in the coming year too.

I will continue writing fairy tales featuring Prudencia. Writing Prudencia is a great stress reliever for me.

I will make sure I have a smooth transition into my new home. I will be the best housemate I can be. I will learn the skills I need to be more independent.This is my last chance. I won't blow it.

In  2018 I want to have a better relationship with my family. I want them to be proud of me. I will do all I can to prove to them that I have changed.   I love them all very much.

As I write this 2017 has just two hours left.  This has been a difficult year for me. Maybe it's been difficult for you too. Tomorrow we start a new chapter. The pages are blank. It is a new beginning.

Make 2018 your best year yet. .Happy New Year.

SHE'S GOT A LOT TO SAY

I write fairy tale journals for my friends here. The narrator in all of my fairytale journals is a spirit named Prudencia. Prudencia is funny, opinionated, and outrageous. She is very wise. 

Prudencia possesses all the qualities I wish I had. I think of her as my alter ego. Her voice is high-pitched and a little nervous. It combines Aunt Clara from Bewitched and Mrs. Mondello from Leave It to Beaver.

The only thing that I cannot take credit for is her name. The name Prudencia came from my favorite telenovela Lo Que La Vida Me Robo. It was the coolest character name in the series. When I heard the name I knew that I had to find a way to use the name in my journals

The following is the Christmas entry from Prudencia's journal.  She is fun to write. I  hope that you enjoy her holiday message.

Hello Dear Readers,

My name is Prudencia. You have probably heard of me. What?  What do you mean you have never heard of me?  I am crushed. Deeply crushed. I am giving you the benefit of my 5,000 years of wisdom. My friends are always saying to me, "Prudencia you don’t look a day over 2,000.". I eat healthily, drink plenty of fluids and I float for five miles every day. 

I am a spirit of love and light.   I was sent to Earth to help people who are alone or in some kind of peril. I wanted to be a fairy godmother. I tried so hard, but I failed the test. You have no idea how difficult a magic wand is to control. They are heavy too. I wanted to turn a  rock into a flower. I pointed the magic wand at the rock. That wand had a mind of its own. I’m serious. One minute my magic wand was pointing at the rock...The next thing I knew poof! The magic wand had changed directions. That wand had quite a kick... The smoke... I was wheezing for days.  I turned one of my boss’s assistants into a frog. He was so angry that he almost disappeared.  You never want good spirits to disappear. The universe needs all the positive energy it can get.

I like helping people. It makes me feel needed.  Human beings are inherently good. Sometimes they make bad choices. That’s where I come in. I try to watch over them, protect them, and guide them.  I care about all of the people that I am in charge of.  It is not just a job for me. it is a calling. I  want the people I care for to have the best lives they possibly can.  It is my job to make sure that they do.

I ponder about everything. I hope all of you like to ponder. Pondering is good for your brain.  I have been pondering about Christmas. Why do people get so caught up in the hustle and bustle?  That’s a fun expression to say. Try it. Ready?  Breathe in. Hustle. Breathe out. Bustle. Ah, it takes so little to make this spirit happy

The Christmas season is about love. Why don’t people realize that? What do they think Santa really represents? He is not about gifts, cookies, or candy canes. Although just between us, I have to admit I love a good rum ball and eggnog spiked with rum. Delicious.

People need to remember Peace and Goodwill the other 364 days of the year, not just on Christmas. Why is that so hard? I  ponder about that so much that I get a migraine? Spirits can’t take medication. We cannot fly if we do we nosedive straight to the ground. It's embarrassing. We just have to ride a headache out. It's exhausting.

I hope that you enjoyed my blog post. I have never been a guest blogger before. I hope I did not ramble too much. My friends tell me that I never know when to shut up.  I have been around for 5,000 years. I have a lot to say.

Ciao.

P.S. If I happen to be on your Christmas list there is a Kate Spade bag I have had my eye on.  I know Christmas is not about gifts, but I  just can not help it. A Kate Spade bag would make my entire century.

MERRY CHRISTMAS! HAPPY HOLIDAYS! SEASON'S GREETINGS! FELIZ NAVIDAD!

Oh, there I go again!








  

I AM GRATEFUL

My family was unable to attend the facility's Thanksgiving dinner this year. I was not sure if I wanted to go.  I hate going to an event alone.I weighed the pros and cons.

If I attended the dinner I would be served faster. Getting a room tray takes forever. I decided to go.  I sat with a woman who lives on my floor. She was alone too. We talked. We enjoyed the delicious food. Both of us were grateful to be together.

I have been approved for placement in community-based housing. The difficult part is behind me. It will take a few months, but eventually, I  will leave here. A meeting will take place later this month to begin my transition process.  I am grateful for a second chance.  I know that a better life is waiting for me.  On Thanksgiving Day 2018,  I will give thanks for my new home

I am grateful to have the opportunity to spend this Thanksgiving with my family. It has been hard for me to be with my family on holidays since my mom and Lucie died. I always felt there was something missing.I would get emotional. I would get lost in memories. I have wonderful memories of my mom at Thanksgiving. I cherish them.

The memory that stands out the most in my mind is my mom's last Thanksgiving. Mom always made a carrot casserole and a spinach casserole as her contribution to Thanksgiving dinner. Her last Thanksgiving she was unable to make the casseroles. Our caregiver had to make them. Mom was never one to give up. I can still see her sitting in her wheelchair instructing our caregiver on how to prepare the dishes. I am grateful for her example.  My sister-in-law is carrying on the casserole tradition. She does a great job.

This Thanksgiving is a new beginning for me.  I am filled with hope. I  will not become lost in the past.  I  am looking toward the future. I am ready to make some new memories.

Be grateful. Make memories. Happy Thanksgiving.

THE GHOSTS OF HALLOWEEN'S PAST

Halloween is probably my least favorite day. Except for the candy of course. ( I love candy corn.) With my sensitive startle response, I am sure that you can guess the reason why.
It wasn't all bad. I  have some good Halloween memories too.

 One of my earliest Halloween memories is of my brother holding me in a standing position so my mom could take a picture of me in my clown costume. (What was my mom thinking? I  was afraid of clowns.)/ I was three or four years old. I 

remember looking at the grainy color photo. I was smiling. I was happy. I was ready to go get some candy!

In the sixties, my parents did not have to worry about having my treats X-rayed fearing they may have been tampered with. People gave me apples and oranges along with candy.

My grandparents lived next door to us. They gave me fruit, candy, and fifty cents. I'd hit the jackpot! I never got a treat until I told a joke or a riddle. I went trick-or-treating until I was ten years old. When I was eleven I was in the hospital on Halloween. By the time I was twelve it was too difficult to get my wheelchair up and down steps.

My dime store costume was hot. It was hard to breathe with that plastic character mask covering my face. The rubber band around my head held my mask in place. It would hurt after a while, but it was worth it. I don't remember any particular costume. I am sure I was Cinderella one year because I loved Cinderella.

My school had a Halloween parade  We'd march around the building in our costumes. We'd end up in the auditorium for a Halloween program. When I was in high school, my mom began volunteering at my school. When you are fifteen or sixteen it is bad enough that your mom works at your school, but it's ten times worse when you see your mother marching in the Halloween parade dressed as a Martian. Complete with a green face and silver antennae!. I was mortified. I stayed in my classroom the entire time.

If you knew my mom you know that she would never dress up as a Martian or anything else, of her own volition. How the principal and secretary got her to agree to it, I never knew. I know the courage it took for my mom to dress up. Way to go Mom!.

I don't have any scary or exciting memories. Well, there was that time at summer camp when they celebrated Halloween in July. I felt an eyeball in the haunted house. At least that's what they told me it was. I was blindfolded. I found out the slimy squishy eyeball was really a grape in oatmeal.  That's just gross!

HAPPY HALLOWEEN!

ONE CHIP AT AT TIME

I have a mental picture of my heart. It's encased in a block of ice. Protected.  

Every time someone says something mean or hurtful to me, every time someone makes me feel that I am not good enough, a piece of the ice that is protecting my heart chips away. It's like an ice sculpture being carved. The ice chips go flying. 

I am sixty. That's a lot of years.  Soon all the ice that is protecting my heart will be gone. My heart will be exposed. Vulnerable. Unprotected from. the rude and hurtful comments people make.

The kids in high school dropped heavy books to see me jump. They laughed. at me.  They were kids. They did not know any better. Adults do. I've had comments made about everything from my teeth (I live in a facility so obviously, I must wear dentures.), to my voice, ("You should learn to speak clearly.") Adults have called me names.  staff sees that my call light is on. But no one helps me. When the staff hears me calling for help, no one comes. I wet my bed. A piece of the ice chips away. 

Why am I not important?  What have I done? Why is it okay for me to have an accident? An aide blamed me for falling over on purpose when she sat me on side of my bed. 

A piece of the ice chipped away. when she blamed me. She does not understand my lack of balance. I wish the staff here would learn about CP.

I should be tougher. Shrug the hurtful comments off.  My tears begin to flow. I visualize the ice that is protecting my heart chipping away.

 None of this is my fault. I am fine just the way I am. It's okay to be emotional. It's healthy. I empathize with and have compassion for other people. The people that make hurtful comments do it to make themselves feel better. They do it so they can be in control. It's okay to be a dreamer. Being a dreamer helps me cope. Being a dreamer helps me live.

The comments still hurt. I know they are not my fault. I  am becoming emotionally stronger every day. Soon I will be able to shrug off the hurtful comments.  The ice around my heart will melt. My heart won't need it anymore. My heart will be able to protect and defend itself on its own.

WHERE'S THE SOUP?

I love soup! My mom made split pea soup. It was so thick that you could almost eat it with a fork. She spent the day after Thanksgiving making turkey soup. Mom didn't make canned tomato soup with water she made it with milk. 

I thought this fantastic concoction was something that my mom had created. I found out that other people made tomato soup this way too.

The only soup I won't eat is canned chicken noodles. soup. Growing up, when I had an upset stomach, mom would heat up a can of chicken noodle soup for me. I would eat the soup and drink white soda with it. I am not a fan of white soda either. Just thinking about a can of chicken soup and white soda brings to mind bad memories. One morning I was accidentally served Sprite for breakfast instead of water.   Yuck! I  will save that story for a future blog post

I  had difficulty picking up a soup bowl.  Mom solved my problem. She bought a soup cup for me. I  could grasp the cup's handle and easily finish my soup.

I enjoy the soup here. Southwestern Tortilla and Clam Chowder are my favorites. I always ask for my soup in a cup. A coffee cup with a handle on it makes it easy to finish my soup. Several residents ask for their soup in a coffee cup too.

There are new coffee cups and bowls in the dining room now. There are even water carafes on every table. There are new soup cups too. That is if you can call them soup cups. They are white, matching the new coffee cups and bowls perfectly. There is, however, one problem. They are too small. The new soup cups remind me of dining in a Chinese restaurant. You know, the small, dainty cups they serve your egg-drop soup in?  

There is nothing wrong with serving soup in small cups.  However, there is a time and a place for everything. When I have soup, I want a  real mug with soup in it.  With the new soup cups, I  am finished with four spoonfuls. The first time I saw them I  just looked at them for a second. Surely, there must be some mistake. I wanted to ask "Where's the soup?' I didn't. I  wanted to. The kitchen has some of the old black coffee mugs left. (What a relief!!)   I asked for soup in black. mug.

I  appreciate the changes the new dietary manager is making. We have had new entrees like pasta con broccoli and shrimp fettucini. I know that change is good. I  have one request. Please don't get rid of the black coffee mugs. I don't want to have to start asking '"Where's the soup?"

HARVEY

When I moved to this facility I was a mess. Not only was I  forced to leave my home, I left my Maltese, Lucie, too.  She had congestive heart failure.My neighbor took care of her for me. I missed Lucie so much. Every time a small dog visited the facility I would want to pet the dog, but then something about the dog would remind me of Lucie and. I would burst into tears.

 I met Harvey and his dog mom, Jane,.through the gentleman who lived across the hall from me. Randy knew that I loved dogs. He suggested that Jane bring Harvey to visit me.It did not take long for Harvey and me to have a regular date every Monday. Harvey's visits were the only thing that I  looked forward to here.

Harvey was a Shih Tzu. He was all black fur. with big dark eyes.  I must admit Harvey was somewhat aloof when we met  He let me pet him while Jane held him. Sometimes he'd sit on my lap. Those first few months It was difficult to get him to make eye contact with me when I talked to him. Harvey wasn't big on conversation. He loved coming here. He wanted to his job. His job was to bring joy and comfort to all of the residents Harvey did his job extremely well. Everyone here loved him.

Harvey warmed up to me putting his paw on my arm. Then he gave that famous kiss on the nose that I blogged about. That was especially meaningful to me because Lucie used to give me nose kisses too.

Jane and I would talk while Harvey settled down and took a nap on my lap or put his chin on the armrest of my chair. Every visit, Harvey made me feel as like I had a dog again. I didn't miss Lucie quite as much

Life got in the way. Jane and Harvey stopped coming. Jane and I had become friends on Facebook I kept up with Harvey through Jane's   posts.  I'd send little messages to Harvey via Jane's Facebook page. Jane told me that when she said my name Harvey would start barking.

Harvey passed away two days ago. I want to thank Jane for sharing Harvey with me  That was the best gift she could have given to me.

When Jane met Harvey he was living in a horse stall. He went to her. He never left her side. Harvey chose Jane to be his family. He couldn't have chosen a better person.

I'll Miss Harvey. He was one of a kind.

Rest in Peace Harvey. I love you. If you see Lucie, say Hi. She acts like a doggie diva, but she's really a sweetheart.

I SEE THE LIGHT

October 15th  marks the three year anniversary (I'm not sure that is the right word. It is not a day that I celebrate.)  of the day my life changed forever. I moved to this facility.

People told me living here would completely different from the life I'd known for 57 years. I didn't realize how different. Nothing could have prepared me. I wasn't given a handbook when I arrived with a chapter. titled  Adjusting to life in a nursing home in 5 easy steps. Adjusting? Embracing? There was no way. When I thought about this being the place where I would spend the rest of my life. I got very depressed.

I spent my first months trying to figure out how I ended up here. Who was the anonymous individual who reported me to the State of Missouri? Why now? It had been four years since my mom died. If someone felt that I was in unsafe living conditions why didn't they report me right away?   Did someone dislike me intensely enough to turn my life upside down?  These questions went round and round in my head.

The first time I investigated my options for getting out of here I blew it. I let my emotions get the best of me. I was embarrassed.  I was afraid to contact the state again. It would be over two years until I did.

"Shit happens. You move on. You do the best you can." That was the response of the first state social worker I met with. when I told her the good, the bad and ugly of the last seven years of my life. She was very encouraging. I am not sick. I need assistance with activities of daily living.

There were meetings, assessments, and a plan was written outlining the care that I need. A nurse came to assess me. She asked what I enjoyed doing. I told her blogging, writing and being on social media. The nurse wanted to know what I liked to do before I moved to a facility. It was difficult to remember all of the things that I.  did before coming here. I told her I liked bookstores and going out to eat. The nurse was hopeful. I pray it won't be long until I am approved.

I have has been in a dark tunnel for the past three years. I am beginning to see a way out. I see the-the light at the end of the tunnel. All I have to do is follow it.

X MARKS THE SPOT

I have never been able to write my name very well. It took me forever to learn how to print. I  taught myself to write my name so that I could sign things for myself. I did not want anyone signing documents on my behalf. If anyone did sign a document for me, it was with my permission. They signed my name and wrote their initials after the signature to indicate that they had signed for me. It takes a few minutes for me to sign my name. If there is a limited amount of time it's faster to have someone sign for me.

I used to print and write my name all the time. In recent years, typing everything on my laptop, I have not had the opportunity to sign my name very much. I am not sure if it is due to my age or a lack of practice, but my ability to sign my name has gotten worse. It is difficult for me to put enough pressure on the pen in order to write. Felt tip pens and markers are easier,.but they are not always available.

.My power chair has finally been repaired. It looks like new. It took about an hour, When the repairman was finished there was a form to be signed confirming that he had done the repairs. Without asking me,, my aide immediately assumed that I couldn't sign the form myself. She told the repairman to have the nurse sign for me. I was angry.

"How can you sign your name when you need help with everything else?" was her question. She assumed that I was unable to sign because I need assistance with my personal care. She did not even ask.

I signed the form. It doesn't matter if my signature did not look the best. I signed the form myself. That's all that matters/ If I were only able to write an X,  it would be my.X. No one else's.

By not asking if I could sign the form my aide took control of the situation away from me. Things.happen here that are out my control. Please allow me to have as much control as I can. Never make decisions for me.

Never assume. Try to put yourself in my place.I am sure that you want to have control of your life. You wouldn't want anyone to make decisions for you.

The issue is not whether or not I can sign my name. It is about respect. It is about allowing me to be as independent as I can. It's about allowing me to be my own person.







.

MOCKINGBIRD

I have moved to a different table in the dining room. 

The gentleman at my table cursed at me. His reason? I asked him to wait his turn. Most of the time, the servers bring his order to him right away. They are aware of how impatient he is. 

On this particular day, he had his food. A server was taking my order. I ordered soup. He interrupted me while I was giving my order. He wanted soup too.  I asked him to wait his turn. I told him that he had food. I told him that someone would get his soup in a few minutes.  "Go to Hell," was his reply.

I am used to him cursing me. It was what he did next that shocked me. He mocked my voice. I tried to talk to him. " Blah, blah, blah, ' he kept repeating. His tone was meant to represent my voice.  His tongue was sticking out.  I was hurt and self-conscious. My self-esteem hit rock bottom. I thought that we were adults. How could a grown man have been so disrespectful?

I get nervous when I talk. I become self-conscious of my voice.  Words get stuck. It is embarrassing.

I hate to use the phone. I am more comfortable sending an email or texting. I do not text very well. I try. The first time that I heard my voice on tape I could not believe it was me. My voice has a nasal tone. If I  am tired it can be whiney too. When  I saw my LTYM video  I told my friends that I should never open my mouth again.

Hearing the gentleman mock me made me feel that I wasn't good enough. That there was something wrong with me. I know that I am good enough. There is nothing wrong with me. I am fine the way I am.

Today is World CP Day. A day to show support for those of us living with Cerebral Palsy. Many people with CP cannot speak. They must rely on communication devices to speak for them. Today and every day I am grateful for my voice. It is a part of me. Nasal quality and all.  I know how lucky I am.

My voice. It's unique. So am I.

WITH THIS RING...

When I was little I dreamed of getting married in a beautiful gown with lots of beads and sparkle. I loved princesses. I still do.

When Sonny and Cher sang I Got You, Babe, each week, with Sonny holding Chastity. They were the ideal family for me.  I would tell myself that someday, I would have a family of my own. No one told me that I couldn't turn my dream into reality. No one told me I could either.

In 1975 my high school held its first prom. When my date and I walked in the teachers were surprised. "Oh look, Joanne has a date," they said. Their reaction made me feel even more self-conscious than I already did.  Part of me wondered why they were surprised. Didn't girls bring dates to their prom?  Did they think that I was too much of a nerd to get a date?

When I was a community college student there was a young man in a wheelchair who would follow me around. I guess he wanted to talk to me, but he did not know how to begin a conversation. It got so annoying that I would find ways to avoid him. I was accused of being a snob. I was disabled. I was in a power chair. Those were the only things we had in the common. Not enough to build a relationship on. A friend thought we'd be perfect for each other. The fact that we had nothing else in common did not matter. People with disabilities should only date other people with disabilities. I got the message. (Some people think that all people with disabilities know each other. We don't.)

In the '70s no books were written showing young women, with Cerebral Palsy, dating and getting married. There are many today. I read them because I want to know what it's like to have a disability and attend high school with your non-disabled peers. 

Compared to a regular high school mine was like attending school on another planet.  My school was much like the nursing home I currently reside in. It was a community unto itself. I am pleased there are books today where a young woman with my disability is encouraged to have a life just like her non-disabled peers. In the '60s, one of the few books available was a book titled  Karen. Karen had Cerebral Palsy. Her mother fought to have Karen attend a regular school in an era when mainstreaming was virtually unheard of. The book was a big topic of discussion. among all of my friends.

It was very difficult to watch a friend with  CP  marry and have children. I did not really want to attend her wedding. I knew that it would be extremely difficult for me. I cried, but not for the reasons you might expect. Yes, I was happy for my friend. I also wondered if getting. married and having a family of my own, was in God's plan for me.

In 2001 I had a hysterectomy. I knew I would never have children. My hysterectomy made it so final. I mourned for what I had lost. I mourned for what I would never have.

People always see my disability first. That's to be expected. When they learn about my accomplishments they seem surprised. I had the same hopes and dreams as other young women. My mother never said it but  I know she thought getting married was an unachievable dream for me.

 New aides always ask If I have children. I told them that I was focused on having a career. I  was too busy to think about getting married and having a family.

If the ADA and mainstreaming had existed when I was growing up my life might have been completely different.

I am a woman who just happens to have Cerebral Palsy.

I WROTE A BLOG POST

Some weekends are best spent playing Word Tornado. I thought it was okay to play word Tornado all weekend because it's like Scrabble. I am still using my brain, but I don't get a headache.  I get a headache, sometimes when I am trying to write blog posts or essays. I thought about blogging this past weekend, but I was like Scarlett O'Hara. I told myself "I'll think about that tomorrow."

I wrote (and deleted) a post titled  What's it like? I asked readers questions such as What's like to be truly independent? What's it to not have to be dependent on other people to assist with your personal care? What's it like to walk?  

I  asked these questions because I wanted my able-bodied readers to stop and think. To focus for a minute on all the things they automatically without giving them a second thought.  I have thought about true independence. I do wonder what it is like to be able to care for yourself.  I am happy and proud of who I am. If I didn't have CP,  I would be a completely different person. I still wonder though.  Especially since moving to a facility. It seems all I do I wait for the staff to help me.

I never want my readers to feel sorry for me. I am in an extremely stressful and difficult living environment. I am handling the best way I can. I  am proud of the personal growth I have achieved. Maybe that's why this happened to me. I needed to change. I needed to learn how to better interact with my caregivers. If I am given a second chance I want to succeed.

I want my blog posts to make my readers stop and think. I want.to give my readers an idea of what my life is living in a facility. I write about negative issues hoping for a positive change. I am grateful for your interest and support.

 I believe there will be a positive end to this chapter of my life. My new life is just around the corner. It's only a matter of time. 

  

ON MY OWN

In my last post, I told you that I would know by September 5th if I had been approved for placement in community-based housing.. I spoke with my case manager yesterday. She is still working my plan. Hopefully, she will submit it soon.

My case manager has spoken with my social worker regarding a sit and stand lift. I hope that is a sign that things are moving in a positive direction.

My family has helped me since the death of my mother in 2010. I want to take this opportunity to thank them for all they have done and continue to do for me while I live in long-term care. .I could not make it in this facility without them. They have never denied me anything. From grocery shopping to allowing me access to their Netflix account. I appreciate it all. I never take anything they do for me for granted. I love them all very much.

My family deserves to have their lives back. The past seven and a half years have been extremely difficult for them. I ask for their forgiveness.  If I am released from this facility I will be on my own  I will learn to pay my own bills. In order to be truly independent, the only person I can rely on is myself. I know my family wants the best for me. I know that they are hoping a better living situation will be found for me. I know that they just want me to be safe.

The government will not pay for a phone for me until I am released. I can even get a better power chair if I am released.  As long as I live here the government does not think that I deserve anything.

I want to thank the social workers for supporting me on this journey. Your interest, support, encouragement, and belief in me means more than I can say. 

This is a scary and exciting time for me. I won't know the outcome for several weeks. I continue to wait, hope and pray. Thank you, everyone, for your interest, love, and support.

3 DAYS AND COUNTING

September 5th, if things stay on schedule,  I will find out whether or not I have been approved for community-based housing.

I am both excited and scared. I am excited because I will be able to roll out of this facility. I never believed I belonged here. If I am approved that means The State of Missouri does not think that I belong here either. That will be extremely gratifying to me.

If I am approved I will have to manage on my own. I hope the state will assist in moving my things. I will also need to learn to live on very little income. That is what scares the most. I have to make this work. If it doesn't, I will end up back in a facility with any chance of getting out lost to me forever.

I know living in community-based housing will be better than living in a facility. Instead of having to share aides with thirty-nine other people the maximum number of people I will have to share an aide with is four. I am sure that I will not have to worry about missing my transportation if I  want to go out. I will not have to worry about wetting the bed.

I will not have to worry that I will have a male aide My case manager has documented my preference.

I am concerned about how everything will come together. The main thing I am concerned about is not having Wi-Fi. If I lost the ability to write and access the internet I would not know what to do with myself.

I hope that I have lots of visitors. I hope that my family has time to come visit me too.

Living in a facility has been the most difficult experience of my life. I have also learned a lot from the experience. I have learned to be more patient. I have learned that arguing will not get me anywhere. It makes people not want to help me. It gave me a negative reputation here. I am grateful for the lessons I have learned

I try not to think about how I will feel If I am not approved for placement.As I said in a previous post, If I am forced to have a roommate I will not survive.

Thank you, family, and friends on Facebook and Twitter. I would also like to thank the staff here who are rooting for me. Your support and/encouragement mean more than I can say.

 Please continue to send good vibes. Please continue to pray for me. 3 days and counting...

Stay tuned.

IT'S GONNA BE A GREAT DAY

The past, two mornings. I woke up. I pushed my call light. Someone came

I didn't have to begin calling ' Can someone help me, please? I don't want to have an accident. I am about to wet the bed." I didn't hear a nurse getting morning meds ready outside my room. I did not have to wonder why she did not ask someone to help me. Or, why she did not help me herself. I pushed my call light. Someone came to assist me.

One morning I missed breakfast because an aide left me in bed on my shower day. She returned after half an hour. By the time I got my shower They were cleaning up in the dining room by the time I got there. The staff got me my cereal, yogurt, and raisins. I ate breakfast. They cleaned up around me. Today was my shower day. I pushed my call light button. Two people came. They helped me to the bathroom. My aide got me in the shower. I was up, dressed, and ready to begin my day. I had plenty of time before breakfast started.

Being helped the past two mornings so I didn't have an accident is a HUGE deal to me. My aides, the past two mornings, have been kind and understanding. They did not just walk past my door.  They did not come into my room, turn off my call light and tell why they could not help me. They did not make me beg for help.

There are good people here. People who care. I want to thank them for helping me. I hope they know what a difference they made in my day.

A WEIGHTY ISSUE

My mother took care of me until she was eighty-seven years old. The reason she was able to do that was that I kept my weight down.  We had sweets and chips in the house. I just watched how often I ate them.

When I arrived at this facility I weighed approximately ninety--seven pounds. Everyone kept telling me to eat. I was underweight. It took a while until I was able to get above one hundred pounds. I was proud of being able to keep my weight down.
I am ashamed to admit that I looked down on other residents here because of the foods they chose.to eat. Didn't they know that all those carbs and sweets they were consuming would cause them to gain weight Didn't they know that if they gained weight it would be more difficult for the aides to assist them?  Didn;t they care about their health? I couldn't understand.

I understand now why residents eat the way they do. I understand because I am eating more too, specifically, desserts. Sweets make me feel better. Eating them helps me cope with stress better. I still try to eat healthily.  I eat mainly salad and fruit. The only difference is that I don't deny myself dessert anymore. If I want something sweet, I eat it. My weight (so far) is still okay.

One of the side effects of the anti-anxiety medication I am taking is weight gain. Now, I am stressing about medication that is supposed to help alleviate stress. It is a vicious cycle!

I know I cannot eat this way forever. I will just enjoy it while I can. I hope someday I will be living somewhere that is less stressful.

Until then...

Does anyone have any cake?

MAYBE SOMEDAY

Ableism is defined as discriminating against a person with a disability in favor of an able-bodied person 

Inspiration Porn is defined as being inspired by someone just because they have a disability. When I was young these terms did not exist.  The first time I heard them I was confused. I did not understand what the terms meant.

When I was growing up I never thought about being proud of my disability. I was disabled. I had CP. I wasn't proud of it. I wasn't ashamed of it. It was part of me. It wasn't who I was. I knew that, inside, I was just like everyone else. The difficult part was getting everyone around me to see me that way.

Before I entered The George Warren Brown School of Social Work my mother was told, by The Dean of Admissions, that the school did not want me. .GWB had to accept me because I met the qualifications for admission. My first advisor  told me that he "would rather see me fail than help me."  I didn't make a big deal of it.  I got rid of that advisor. I was determined to prove the school wrong. I did.

I have been told twice, by The Office of Vocational Rehabilitation, that I am unemployable. Again, I am determined to prove that wrong.

I guess I view things differently than the majority of disabled people. The ADA has opened many doors for people with disabilities.   However, a part of me thinks it is sad that people with disabilities won't have the experiences I did in seeking to get an education and find employment. Those experiences  made me a stronger person,

I have been patted on the head, both literally and figuratively, more times than I can count. I have been spoken to condescendingly and ignored. It is not right, but when you are disabled, (sometimes). you have to deal with it.

Ableism and Inspiration Porn have always existed. The only difference today is now they have names and definitions. I don't think that I will ever truly be thought of as equal by society.  There will always be people who will view me as different. In a  perfect world that wouldn't be the case. The world isn't perfect. I am different. I need services and assistance that others don't. That's not a bad thing. That's just how it is.

I try to live the best life I can. I keep pushing forward toward my goals. I continue to advocate and raise awareness through my writing.  

Maybe someday the world will be perfect. Maybe someday we won't need terms like Ableism and Inspiration Porn.  Maybe someday everyone will look at me and not see my wheelchair. Maybe someday everyone will really see me.  Maybe someday.











  

BELIEVE

I had a care plan meeting with the staff here. My case manager was also present. She asked about my needs.  She asked if the staff thought I would be able to live in community-based housing. All agreed that, with the proper supports in place, I would.

I had to answer eight pages of questions. This was an assessment of my skills and abilities. A few of the  questions were "What is bleach used for?"  "How would I find a job?"  I was asked to calculate the correct change, in my head, after a purchase had been made. (The one thing I could not do.) Except for calculating change, I think I did well.

My case manager returned two days later. She asked me some more in-depth questions. Gathering information for my plan. My plan must be submitted and approved. She hopes it will be approved before she retires at the end of September. Another case manager will take my case at that time. My profile will be sent out to various agencies/. Hopefully, a spot in community housing will be found for me.

She asked what the one thing was that I would like to do if I am assimilated back into the community. My answer was. ""I know I won't have much money, but  I'd like to go out to dinner,"  I  told her I wanted to have some type of part-time so I would have a little extra money. She asked about my hopes and dreams. My hope is to be released from this facility. My dream is to be a paid freelance writer. All this really means is that I just want to feel like myself again. I haven't for a very long time.

I have to keep my eye on the prize. I have to stay positive. I have to keep moving forward. I have to believe.

CELEBRATING A MILESTONE

Five years ago, today, on July 7, 2012,, I wrote my first Confessions of a Disabled Diva blog post. I didn't remember the date until it showed up in my news feed on Facebook.  Five years, 190 posts. This blog began as an experiment. I wanted to see if I could write something other than children's stories. I wanted to see if I could write a blog that adults would want to read.

My first post was about Lucie. I knew writing about her would be easy for me. Everyone knew how much she meant to me. She meant even more after my mom passed away. I wanted people to know just how special Lucie was.  I rolled up to my desk and began typing. When the post was finished, I'd written a post titled "For the Love of Lucie." https://confessionsofadisableddiva.blogspot.com/2012/07/for-love-of-lucie.html The post described in detail what a doggie diva Lucie was. Lucie and I went through some tough times together. her companionship was invaluable. I think of her every day.

I kept writing. I wrote about everything from struggles with caregivers to Cher. I wanted people to know what my life was like. I wanted people to know what it is like to be dependent on other people for almost everything. I always tried to end with a positive message. I always tried to give my readers something to think about.

I  have always been an advocate for people with disabilities. In 2014, when my life changed forever, I became an advocate for people in long-term care communities as well. I began blogging about how conditions were here.  How understaffing effects resident care. People need to know what life is like in a facility on a daily basis.  How will conditions ever improve if people aren't made aware of the issues residents face? Changes are happening at this facility. I hope the changes will be positives ones. I hope the changes improve the quality of life for those of us who live here.

I am trying to find an alternative living situation. Cerebral Palsy is a developmental disability. I must work with the Department of Mental Health. I have reactivated my case with them. I will be getting a case manager to assist me. Whatever happens, I will take my readers on the journey with me.

Writing this blog is therapeutic for me. If I write a post and publish it, I feel better because my voice is being heard.

Five years. 191 posts now. I hope my message of hope and perseverance has made a difference.

Thank you to those of you who have supported this blog for the past five years. Here's to five more.

IT'S WHAT GOD CALLED HER TO DO

Sondra Barker is the new assistant activities director here. She believes in doing "whatever God calls her to do."

Besides raising her own threes children, Sondra raised her nephew from the age of six until he was twenty. She is now raising her fourteen-year-old granddaughter as well as her ten-year-old grandson. To ensures that her grandson would not remain a ward of the state, Sondra, and her husband took foster parenting classes.

They learned CPR and their home was inspected to make sure it was safe. Even their pets were scrutinized.  Sondra and husband were required to make sure that their pet's vaccinations were up to date. About a year after they had become his foster parents, they petitioned the court to become his legal guardians. The judge praised Sondra for taking such good care of her grandson. They were granted full custody. Because of his grandmother's love and support, her grandson will never have to worry that he will become a ward of the state again.

Sondra credits two sisters, Effie and Elsie, for inspiring her interest and compassion for the elderly. They were her babysitters when she was eight or nine years old. Effie and Elsie taught Sondra to love Lawrence Welk. I have a feeling that her memories of Lawerence Welk bring back fond memories of Effie and Elsie too.

Sondra tells the elderly, "If you have a story to tell, tell it to a young person."She tells young people, "Listen to an older person. Listen to their stories. You can learn a lot."

Sondra loves to sit and offer comfort to people when they are passing away. She will hold their hand or sing to them if they are afraid. Sondra believes there are two times when we are the closest to heaven. When we are born and when we are dying. Both times Jesus and the angels are in the room with us.  Once, When she was doing nails at a facility, a lady asked to come to her room and do her nails. By the time Sondra got there, the lady had died. Sondra still did the lady's nails because that was her last request. She received an award for honoring the women's request.

When Sondra was a nurse's aide, in the sixties, she did what she was told to do. She didn't complain. She had compassion for the people that she cared for.

Sondra has worked at a number of facilities in the activities department. When she was a director she was sent to school. She has her chauffer's license. She is also a deputy. Sondra can register people to vote.

Before taking the position of assistant activities director here, Sondra had been a lunch lady at a school near her home. She liked that job very much. She applied for the position of activities director here She was offered the assistant director position. When she walked into this facility she knew that it was where God wanted her to be.

I wish there were more people like Sondra working at this facility. I wish there more people like Sondra in the world. She the most selfless and compassionate person I have ever met. She makes resident's lives better.by doing what God calls her to do.

R E S P E C T

Those of you who read my blog regularly are familiar with the fact that the gentleman at my table has yelled, cursed, and pointed his finger at me He has also told me how disrespectful I am. The only thing I am guilty of is asking him to move over a little bit so he didn't hit my foot.

This morning, at breakfast, the gentleman yelled at me.  He yelled at a nurse. He told both of us he could yell if he wanted.  He said that he even yelled at his mother. 

It's not about him hitting my foot, It is about the lack of respect he has shown me. He wants me to move. I have always refused. I do not think it is fair to reward an individual's poor behavior. He has made his feelings very clear telling me, "I wish you'd move." "I thought you were eating in your room." I refused. I was trying to teach him a lesson. You don't always get your way. This is especially true when you live in a facility.   I wanted to get the respect  I deserve. It is not my job to teach him anything.  

What is more confusing to me is that he gets along well with the other female resident at the table. He has never yelled at them in my presence. I have tried to show interest in the things that interest him. We are adults I thought the two of us could be civil to each other. I know now that's not going to happen. 

The only thing I have control over is my behavior. I have been in this facility for almost three years. I have learned that yelling does not win you any friends here. It makes people not want to help you. I am trying hard to change my behavior.  I am claustrophobic.  If I am in bed and the door is closed, I feel trapped.  I  will call for help because  I am afraid of being forgotten. If I cannot reach my call light, when I am in bed, I will call for help too.  

I can do one of two things. Change tables or suck it up and stay where I am. I like the other woman at my table. She and I have never had an issue.

I am sad that this issue is still continuing at my table. I am sad because the gentleman doesn't know. how disrespected I felt. I am sad that he thinks his behavior toward me is okay. I am sad that he just has no manners. I feel sorry for him. I am sad because he always makes me feel like I am the one who is causing a problem at the table.   I stay in my room and write. I try not to bother anyone. If the room trays were not given out so late, I would eat my lunch and dinner in my room. It would be peaceful and quiet. I am sad that he is the reason I will probably change tables.

We all live in this facility together. We do not have to like each other. However, we should respect each other. Respect means everything.

ICON IS SPELLED C H E R

I have written several columns for The Mac Wire regarding Cher receiving Billboard Music's Icon Award this Sunday. would not be considered a  diehard fan if I didn't write a post on my personal blog as well. 

I could give you stats. I could tell you that she has had a hit in on the charts in every decade since the sixties. I could also tell you that her Farewell Tour ran for three years. It was the highest-grossing tour of all time by a female artist, However, this post is not about stats.

The definition of an icon is someone who is admired and successful. Cher has certainly been successful. She is also admired by millions of people.  That definition is not why I consider her to be an icon.

Today is Cher's birthday. Last year, on her birthday, I received a personally autographed photo from her. The photo was not obtained easily. I drove people nuts to get it. I am forever grateful.

Her inscription on the photo of"Keep Strong" is so appropriate/ Less staff, but more residents on my floor mean a longer wait for assistance. Sometimes, when  I don't think I will make it, her words come into my mind. I  look up at the framed autographed photo on my wall. I know that I have to make it. I have no other choice. 

When she was told she couldn't do something, she did it anyway. When people thought she was finished, she proved them wrong and came back stronger. No matter how many times she has been knocked down, she gets up and keeps going.

"After the nuclear holocaust, they'll be cockroaches and Cher." This quote fits Cher. It means she is strong and she will endure.

Strength and endurance are what make Cher an icon.

Happy Birthday, Cher. Congratulations on the Billboard Icon Award. Billboard could not have chosen a more deserving recipient.
   

LITTLE THINGS MAKE THE BIGGEST MEMORIES

It has been seven years since I lost my mother. Seven-second Sundays in May were not celebrated. I've spent this weekend lost in thought, remembering my mom. I want to share my memories with you.

My mom would be so embarrassed that I  used this photo. "Oh, for heaven's sake my hair's in curlers." Every Saturday my mom washed her hair and put it up in curlers at our kitchen table. The pink plastic curlers were in a box that was falling apart. She would prop a mirror up in front of the box and roll her hair around each curler making sure each curl was just right.  This is a great photo. Mom has finished putting her hair in curlers. Lucie's on her lap. Both of them are ready for a relaxing afternoon. This photo has been the wallpaper on my laptop for the past seven years. It reminds me of a typical Saturday morning at home.

Saturday nights we would go to Pietro's, a neighborhood restaurant. Mom would order pasta with chicken and vegetables with a pink sauce. "Could you mix them,?" Mom would ask. They were not supposed to mix the red and white sauces, but they did it for her.  She would also order decaf coffee with Kahlua. She would always be sure to add, "And, don't forget the whipped cream" when ordering her drink.

For my mom's ninetieth birthday her great-grandson made her a necklace. He had strung colored beads on a string. She loved that necklace. She wore it every day. She would tell anyone who admired it, "My great-grandson made it for me." The beads and pattern were so pretty that people thought that she had bought them at a store. When Mom died I was given the necklace. I wore it every day. It made me feel closer to her. When the string broke, Witt and his mom fixed it and sent it back to me.  I wore it until it broke again. Then,, I carried some of the beads in my purse for a  long time. I knew how much joy wearing it had given my mom.  I felt the same joy when I wore the necklace. I was not ready to lose what the necklace represented, a connection to my mother.

My mother loved  Everybody Loves Raymond, Wheel of Fortune, and the Game Show Network. She never tired of watching them. 

Pink curlers, a necklace made of beads, coffee with Kahlua, pasta with a pink sauce, sitcoms, and game shows. These little things made the biggest memories.

Happy Mother's Day.
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