Sunday, October 22, 2017


I love soup! My mom made the best 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 was something that my mom had invented. I have since learned that other people made tomato soup this way too.

The only soup I really won't eat is canned chicken noodle.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 white soda either. Just thinking about a can of chicken soup and white soda brings to mind bad memories. One morning they accidentally served Sprite to me at breakfast instead of water and.well, I  think I  will save that story for a future blog post

I loved to eat soup. I  had difficulty picking up the 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. It has a handle on it making it easy to finish my soup. Several other residents have 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 pretty, 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 Resturant. 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 here,, I want a  real cup of soup.With the new soup, cups I  am finished in 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,  but I wanted to. They still have some of the old coffee mugs. (What a relief!!) If  I remember when I order, I ask for soup in a black.mug.

I  appreciate the changes the new dietary manager is making. We have had new entrees like Pasta Con Broccoli and Shrimp Fettucini. They were delicious. 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?"

Friday, October 13, 2017


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.

Sunday, October 8, 2017


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 end of the tunnel. All I have to do is follow it.

Saturday, October 7, 2017


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.


Friday, October 6, 2017


Well, it finally happened,, I have changed tables in the dining room. You are probably getting bored reading about my dining room dilemma. Something happened recently that is important to me. Something that deserved . to be written about. 

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. I think I'll keep it.

Thursday, October 5, 2017


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 to 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 a 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 student at Meramec there was a young man in a wheelchair who would follow me around. I guess he wanted to talk 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 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. (There are also people who think that all people with disabilities know each other. We don't.)

In the70's there were no books 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 be mainstreamed. .My high school was so different from a regular high school. Compared to a regular high school, mine was like attending school on another planet.  My school was much like this facility. A community unto itself. I am pleased to read books today where a young woman with my disability is encouraged to have a life just like her non-disabled peers. In the 60's, one of the few books available as a book titled  Karen. The book was written by her mother. Karen had Cerebral Palsy. Her mother fought to have Karen attended 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 my 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 it would ever happen for me.

In 2001 I had a hysterectomy. I knew I would never have children,.Myhysterectomy 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 girls my age. My mother never said it, but deep down,  I know she thought getting married was an unachievable dream for me.

 New aides always ask If I have children. I tell 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 will never know.

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

Monday, September 18, 2017


Some weekends are best spent playing Word Tornado. I thought it was okay to playWord 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 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.