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 or makes me feel that I am not good enough, a piece of the ice 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 I need help. 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 my bed. 

A piece of the ice chipped away. when she blamed me. She didn't 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 who 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

People told me living here would be 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 this nursing home 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 the 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 and assessments, and a plan was written outlining the care that I needed. A nurse came to assess me. She asked what I enjoyed doing. I told her about 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 been in a dark tunnel for the past three years. I am beginning to see a way out. I see 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.