Saturday, July 22, 2017


The room divider and privacy curtain have been put up. My room looks like the hospital room that my grandma was in when I was young. I  look at the curtain. I wonder how this can be happening.I cannot catch my breath. Anxiety.

Noise, confusion. Furniture being moved.  Residents in wheelchairs on both sides of the hallway. The med cart, the treatment cart are in the hallway too. "Excuse me, excuse me." May I get through, please?" I was just trying to get to the dining room. It took several minutes. I finally made it.

Two staff members have been extremely kind to me. I consider them m my friends. It is because of them that I  love sushi now. They make me laugh. They listen to me. The only way I have to repay them is through my writing. I am writing each of them a fairytale. I have created plots and characters in my head. My friends are characters in their fairy tales too.   I guess I live with my head in the sand. I have been told that I live in Lala.Land. Maybe I do. Living here is extremely stressful. Writing the fairy tales take me away from my reality. Away from this place. Lala Land is a nice place to live. At least for a while.

This facility is a business. They have put that fact ahead of our comfort and needs.It is sad. I get it. I am having issues and the person hasn't moved in yet.No one should have to live this way. Everyone has a right to their own space. We are being warehoused now. I wonder if the people who make decisions affecting this facility would like to live this way? 

I met with a social worker from the Department of Mental Health. I have a good chance of getting out of here. The social worker is checking into some options. She will write a plan. It will be a slow process. It won't be soon. There is a good chance I won't have to die here. That's what I will focus on. Not all the chaos going on around here. 

I am still scared. The only thing that I can count on is that nothing will be the same. I know there is a place for me in the community. I know that my future will be better than my past.   I have to be patient. My time will come. I won't give up.

Wednesday, July 12, 2017


"I may take a while. We don't know when, but it will happen."   That's how my social worker told me I would be getting a roommate.

I tried to explain to her issues that I have issues regarding the bathroom due to my CP and my spastiscity. She didn't want to listen. Her response was, "Having someone in the room with you will not affect you using the bathroom."  There is not even a door on the bathroom. There's just a curtain. .It was clear she didn't understand. She didn't get it. I told her she had to leave. I called my family.  Then I cried. I am embarrassed by my behavior. I wish she would have understood. I wish she would have listened.

People are always coming in and out of my room. The aides come in to talk to each other aides when I am on the toilet. They don't care. Even though I have had more things lost and stolen than I can count, but it was still my room. The place where I wrote. The place where I  blasted my music when I was frustrated.

I was told they tried to do this to me once before. My previous social worker got so upset that she walked out of the meeting. I was not aware of any of this. My brother knew I'd freak out. I was not given a roommate.

My facility has a new administrator.  I have a different social worker. This facility is a business. I it's run by the book. That's fine. Except for the fact inside of this facility are people whose lives are affected by the decisions other people make.  People who go home to their own space. People who have a bathroom with a door on it. People who have rights. No one is going to arbitrarily change their environment.

Being on Medicaid has made me feel like a second class citizen. My family pays for the things I need. People are being moved around in this facility. Every time that I see maintenance on my floor I wonder if they are going to install the divider with the curtain. The divider that will transform my room into a real hospital room. I won't be able to trick myself into believing that I live in an apartment anymore.

When I came here there was a resident on my floor named Bernice.I am almost certain that Bernice was on Medicaid. She was allowed to remain in a private room until she died. The staff here cared about her comfort. They cared about people, not profit.

When I came here, dietary would see that you got you what you asked for if it was a special item.  Everything is generic and cost-effective now.

I am not angry. I am tired. I am scared. I am working on getting out of here. I hope eventually to be back in the community. I will have my own room. If I have to share a bathroom I am sure it will have a door,

This facility specializes in assisting people who have MS. If I had MS and I was on Medicaid, I would not be getting a roommate.I have the wrong disability.

 Privacy will always be important to me. Medicaid has made privacy a privilege. It is a right that should be afforded to everyone. It should not be based on your ability to pay.

Sunday, July 9, 2017


Five years ago, 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 something that people would want to read.

My first post was about Lucie. I knew writing about her would come easily to 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." 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 od 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.

Wednesday, June 28, 2017


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 doing what God calls he to do.

Thursday, June 22, 2017


The past few weeks have been extremely difficult. Aides arriving late or not showing up at all.Aides turning off my call light without helping me and aides leaving me without my feet strapped in on my footrests, putting me at risk of sliding out of my chair. This happened most recently, last night. My aide left after discovering the sling for the lift had disappeared.   She'd  removed my footrests before she realized the sling for the lift was gone.

I felt myself begin to slide. I did not want to slide out of my chair. I began to yell for help. The nurse finally came. She asked me why I was screaming. I told her I was falling. The nurse and my aide finally got me back in my chair. I was relieved. I was very embarrassed that I  had to yell for help. It was late. I was disturbing my fellow residents.I didn't know what else to do. I apologized to some of the residents this morning.

I used to yell for help all the time. Then my aides and I developed a routine. I trusted the aides who took care of me. I had the same people caring for me the majority of the time. Now, I never know who will be caring for me or if they will be on time. If I wake up in the morning and need to go the bathroom and no one answers my light for over half an hour, I have no choice, except to call for help. I do not want to wet the bed.

I am trying very hard to change. The lack of staff is making it difficult. There are times when I have to behave the way I did when I got here. I do not want to be that person anymore.

I am going to begin to work with Paraquad with the goal of transitioning out of this facility.  I hope to find a safe living situation in the community. It might not work.I have to explore my options. I will have to prove to the state that I am deserving of another chance. I will have to prove that I  have respect for those who care for me. I will have to demonstrate that I have the skills to communicate my needs effectively. In this facility, I am one of almost thirty people. Sometimes I have to do things I am not proud of to make sure my needs are taken care of.

I do not want to have the reputation of being someone who yells. The person I want to be is confident and respectful. Yelling is degrading. Showing respect is empowering.

Wednesday, June 14, 2017


Summer is here. For almost twelve years my mom and I attended the Days of Our Lives and General Hospital fan weekends in California. We also traveled to England, Canada, Alaska, Maine and probably a few other places that I have forgotten, with Flying Wheels a travel agency that specialized in organizing trips for people with disabilities. 

Summer afternoons at home were spent swimming in our pool, going out to lunch, going to the movies or to the mall. I miss those summer days more than I can tell you

Now, I am in a facility. A place where if the temperature gets close to ninety degrees, we are forbidden to go outside unless we are accompanied by someone on staff here or a family member. I have found a way to get around that rule. I go to the patio on the first floor. That door is always open. It is secluded and quiet. I sit outside in the morning or after dinner. Never in the heat of the day.

I will never have another summer like the ones I had when I lived at home. However, I can still enjoy myself. I have decided, at least for the summer, not to worry about whether I am making money or not.  I am going to blog, write stories and do some journaling. I will still write a monthly column for The West End Word as well as a weekly piece for The Mac Wire, but I am going to write for fun too.

Living here is stressful. This summer I am going to try to decrease my stress and relax Writing, like, reading, can take me anywhere because there are no limits to my imagination.

Monday, May 29, 2017


Those of you who read my blog on a regular basis 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. They have never exchanged a cross word 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 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.

Sunday, May 28, 2017


"I watched the movie Sex and the and the City yesterday. There is nothing like spending a Sunday afternoon with Carrie and Big. I had dinner with my neighbor at the restaurant down the street. Today, my caregiver is bringing KFC boneless chicken/  Then, we're watching  The Guilt Trip. Happy Memorial Day, everyone." My Facebook post from May 27, 2013.

This post came up on my Facebook news feed yesterday morning. What a difference four years make. 

Four years ago my concerns for Memorial Day were if I had enough money to get boneless chicken and the Reese's Chocolate Pie from KFC. This year, I wonder if I will get my shower on Monday because my regular CNA will be off for the holiday. 

Four years ago I was able to get in my van and my caregiver would drive me wherever I wanted to go. Now,  I cannot sit in front of the facility.unless I have someone with me.  It is true, I could take Call-A-Ride, but that is a hassle too. When I have a new aide, they do not know my routine. With all the new residents on my floor, sometimes, my routine cannot be adhered to.  I may not always get the times that I request using Call-A-Ride. Last week, I  canceled an appointment because I was afraid I would miss dinner. I guess the facility could have saved my dinner.  Understaffing has affected the dining room too. I didn't want to risk it. No one will help me to the bathroom in the middle of serving dinner. The aides are all busy. I would need assistance because I would have been gone for several hours.

Four years ago I lived in a house. Now, I have one room. I am thankful for my own space. My privacy means everything to me. I pray that it is never taken away.  My room and my writing are what keep me sane here.

Four years ago I knew approximately how long it would be before someone helped me to the bathroom. Now, if no one is answering my light, and I really need assistance, I call my family. My brother is the one who makes sure I get the help that I need. 

Four years ago, if I needed to see my doctor I made an appointment and went to see him. Now, I tell a nurse, but most of the time the message is not relayed unless I keep nagging. Nagging is exhausting.

Four years ago I didn't have to worry about whether or not a stand-up lift worked. I did not have to wait for my CNA to find a battery.The lifts and batteries do not work a lot of the time.We need new lifts. 

Four years ago I had a life. I was a volunteer. I went out on the weekend. Now, I  exist.  It was not much of a life, but it was mine. I have called Paraquad about some alternative safe living situations. The woman was supposed to email me information several weeks ago. She has not. I guess I will have to keep calling to get results.  Nagging is exhausting.

Freedom to me is things others take for granted. Going to the bathroom when I need to. Having an accident ts embarrassing and degrading.  Freedom is knowing that there will be an aide available to put me to bed each night as well as get me up in the morning using equipment that works, Transportation services that are not costly but will transport me in a timely manner. Having a regular writing job so I would not have to depend on my family so much. 

Tomorrow is a day to thank and remember the men and women who fought for our freedom. Think about the freedom you have. Think about the small things. Remember and be grateful.

Saturday, May 20, 2017


I have written several columns for The Mac Wire regarding Cher receiving Billboard Music's Icon Award this Sunday.  I 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.

Sunday, May 14, 2017


It has been seven years since I lost my mother. Seven second Sundays in May that 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 Pietreo'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, Witt, 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 it at a store. When Mom died, I was given the necklace. I wore it every day. I 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 are the things that make the best memories.

Happy Mother's Day.

Wednesday, May 3, 2017


Living in a facility is not easy. I have heard it compared to living in a mental institution or a prison. Sometimes, there is so much noise in the dining room I cannot have a conversation with the person sitting across from me.  I've witnessed an adult walking down the hall wearing nothing but a diaper I cannot sit outside in front of this facility without supervision/ I'd say that is an apt analogy

An escape. I had to find one. My answer came via Netflix.   I discovered telenovelas. A telenovela is a Latin American soap opera that is either produced in or televised from, Latin American countries.

Unlike American soap operas, telenovelas usually don't run for more than a year. That's the first thing that attracted me to them. I love American soap operas, but there are times when they seem to drag on forever without moving forward.  I knew the telenovela would reach a conclusion in a specific number of episodes.

I started watching Lo Que La Vida Me Robo.  The English translation is, The Life You Took From Me. Each night I  traveled to Agua Azul where beautiful Monserrat Mendoza is in love with Jose Luis. Montserrat's family is in financial trouble. Her mother forces her to marry Alejandro in order solve their financial problems. Alejandro inherited his father's fortune.  He promises to pay all of the Mendoza family's debts as long as Monserrat becomes his wife.

I got caught up in the story. I didn't even mind reading the subtitles. This telenovela allowed me to travel to another country. I will never physically be able to travel again. I got to travel to Mexico every night.  I saw palm trees, blue skies and a beach where the water was the bluest I'd ever seen. I was inspired to learn about another country and its culture.  I've learned a little Spanish online. I can recognize many words, but my pronunciation needs a lot of practice.  My ability to make typos is not limited to the English language anymore. I make them in Spanish now too.

I'd like to thank the cast and crew of Lo Que La Vida Me Robo, for the gift they gave me. They gave the opportunity to escape this facility.  It doesn't matter that my escape was only in my mind. I got lost in other people's problems and forgot about my own. I forgot I was in this facility.

I can't think of a better gift than that.


Saturday, April 15, 2017


When my mom turned fifty. I was twelve. I thought she was really ancient. In a few days, I will be celebrating my sixtieth birthday. I was wrong. Fifty is not that old after all.

I have been thinking about the significance of this birthday// What makes it different from all of my other birthdays?   

Well, for one thing, I am letting myself eat junk food my entire birthday week. All the cookies, cake, chips and ice cream I want. When the week is over, it will be back to salad and fruit. Until then, I am having a great time.

On my fiftieth birthday, I told a friend how much I disliked turning fifty. It seemed so old. She said fifty was a great age to be. She said that I should embrace it and be happy. I didn't appreciate her words then, but I do now.

That's what's different for me about turning sixty. I will embrace it. I will be happy.I want to have fun. I want to laugh.  I have always been afraid of embarrassing myself.  I finally understand that life is too short to worry about what other people think.  As long as I know that I am doing the best I can, that's all that matters.  During her Believe Concert Cher said, "It's really fun to be old and stupid."   She was right. Living in a facility will always suck.  As long as I have people in my life who make me laugh and allow me to be silly sometimes, I think I will be okay.

The best gift anyone can give me is to visit me. I get very lonely here. Having visitors on my birthday would mean a lot to me.

This birthday is about being positive. It's about looking forward. It's about being hopeful.

My sixtieth birthday is going to be awesome. I cannot wait!!


Wednesday, April 12, 2017


Growing up physical therapy was torture.  In elementary school, the physical therapist did not care if the stretching she was doing to my limbs hurt/ The woman would tell me that the stretching did not hurt.  I wondered how she knew. That was the attitude of all of my PT's in the 1960's. They were doing their job. I was getting my therapy. That was all that mattered.

In 1970, when I was in the 8th grade, a new physical therapist began working at my school. She was the first physical therapist to ever say she was sorry if she hurt me while bending and stretching my arms and legs.   Her words meant a lot to me because I knew that she wasn't just saying it. She was genuinely sorry that the stretching hurt me. Her name was JoAnn. too. We both spelled our name differently. but I think it was a sign of the friendship that was to come.

When I met JoAnn she loved gothic romance novels. Her favorite author was Victoria Holt. It wasn't long before I was reading them too and dreaming of moving to England to marry a rich, handsome man and live on his estate. We'd talk about te characters and plots.When I was young, those books were the coolest books I had ever read. Those books came with me whenI I moved here. I couldn't bare to part with them.

JoAnn did my hair and makeup the day of my prom. The night itself was a disaster. My date and I had nothing in common. What made my prom special was that JoAnn made me look and feel like Cinderella for a night. 

One year, on my mom's birthday, JoAnn and my eighth-grade teacher, invited me to go to a John Denver concert with them. My mom could not believe that I  would consider going out rather than celebrating her birthday with her, but that's what I did. We had pizza at JoAnn's house before going to the concert. It was a fun night. In case you're wondering,, my mom, celebrated her birthday with my brother and his family. And, eventually, she forgave me.

We lost touch for many years. After I contacted her daughter on Facebook, JoAnn and I began emailing each other. When we finally met for lunch it was as though no time had passed. We talked and laughed just like we always had. Our friendship was proof that you don't have to see each other every month to have a bond with a person. You can pick up where you left off no matter how much time has gone by. 

JoAnn was with me the first time I saw Sonny and Cher in concert. She had gotten me a cardboard cutout standee of Cher from a record store. That Cher cardboard cutout stood in my room for years freaking people out.   She did all she could to try to arrange for me to meet Sonny and Cher.  I think she would have driven me anywhere to meet them. I wanted JoAnn to be with me again in 2014 when I saw Cher for the last time. Three weeks before the concert, I sprained my knee. I was sure that I would not be able to go. JoAnn called me when I was in the ER awaiting news on my knee. She assured me that I would go to the concert and we would have a great time.

The morning of the concert, after I found out we would be meeting Cher's BFF, Paulette, I asked JoAnn to get gifts for Paulette to give to Cher. When I talked to JoAnn later in the day, she told me she had googled Cher to help her decide what to buy.The reason I  chose the photo in this post is because Paulette is holding the beautiful flowers and box of candy JoAnn chose for Cher. She was right, we had a great time.

The first time JoAnn came to see me here. I cried and told her how much I wanted to go home. She told me that Cher was a good role model for me because if Cher found herself in my situation she'd find a way to make it work. A few days later she emailed me. At the end of the email she had written, "WWCD?" I knew what she meant.

I learned several weeks ago that JoAnn had passed away. it is hard for me to believe I will never talk to her again.

I love my brothers very much. When I was fourteen  though, all I wanted was a sister. I guess it's a girl thing. I would ask JoAnn repeatedly if she could please be my sister. She would explain to me repeatedly why that was not possible. The time we spoke I reminded her of what I asked her all those years ago. The last thing she said to me before our conversation ended was, "I'm your sister, okay?"

Thank you, JoAnn.  Thank you for being my friend.

Friday, March 24, 2017


Image Courtesy of the March is Cerebral Palsy Awareness Month Facebook Page
:"So, what do you have, MS?" This is the question I am asked the most by a new aide. New aides often assume I have Multiple Sclerosis because that is why many of the younger residents are here. 

New aides are given very little information about the residents they care for. The only thing they may have been told about me is that I  use the sit and stand lift and that I need assistance in the bathroom. Sometimes they are not given any background information at all. When that happens it is up to me to educate them about my CP.

Cerebral Palsy is a disability that's caused by the brain being damaged or not properly developed.  Damage can occur before, during or shortly after birth.  Cerebral Palsy impacts a person's movement, coordination, and balance.  In some cases, a person's speech is affected.  

New aides tell me to relax when they are dressing me.  I have Spastic Cerebral Palsy in all four of my extremities.  The spasticity makes my limbs tight.  It is difficult to move. A new aide makes me nervous. That makes the situation worse.

When a new aide is getting me out of bed I tell them I do not have balance.They cannot let go of me. I also tell them to pull me back on the bed. I do not like to feel as though I am going to slide off of the bed. Feeling like I am falling is just-as-scary as actually having it happen.  I once told a new aide not to let go of me when she was putting me in bed. I guess she didn't believe me because she let go. I feel over on the bed. Maybe she just wanted to see if I was really telling the truth.

No, I do not have MS. I am one of the 17 million Americans who has Cerebral  Palsy. It's not a disease. You cannot catch it. It is a disability. It would be helpful if this facility gave new aides more information about the people that they care for.. I will continue to try and educate the aides who care for me. Some will listen, Some won't. I will keep trying.

I look forward to the day when we won't need to raise awareness. The day when no one will care what someone's disability is. 

March is Cerebral Palsy Awareness Month.  March 25th is Cerebral Palsy Awareness Day. Wear green to show you support Children and adults with CP.  

For more information go to

Sunday, March 19, 2017


A new med tech tried to give me another resident's medication. I knew it was not mine. Thankfully, she believed me. What if I had not been unable to talk? What if I did not know what medications I took?  I have heard stories of a resident being given the wrong medication. It is scary.

Aides have tried to convince me that I have a UTI and that I need to have my vital signs taken at the beginning of each shift.  I have been awakened at midnight to have my vital signs taken. When I tried to tell them I did not have a UTI, I was labeled as uncooperative. The nurse finally came in to tell me the aide made a mistake.  A resident whose name is similar to mine had the UTI. A nurse once tried to convince me I was scheduled to receive a B12 shot. I was sure that the shot wasn't meant for me. When the nurse checked again she realized I was right. The shot was meant for the resident whose name is similar to mine. I am aware of any medications I take. I know the dosage I am to be given. I know any potential side effects.  I ask questions so that there will not be any mistakes.

Aides say I am spoiled because I only want certain aides to take care of me. I want and deserve good care. There a few very good aides here who take their time. They make sure I am clean. They make sure I am comfortable. We only get showers twice a week. I want aides that I know will give me a good shower. I don't want someone who gets me in and out in two minutes. If I ask to be given a longer and better shower many aides tell me they don't have the time. 

I sleep on an air mattress. Almost every night it deflates when my bed rail is raised. If the mattress deflates entirely, I am lying on metal.  Not everyone knows how to reinflate the mattress.When it is finally fixed, it takes awhile for the mattress to reinflate. I am thankful when the aide who knows how to fix my mattress is taking care of me.

I  sleep on my side with a pillow behind my back. The same aide who fixes my mattress knows how to position the pillow so that I am comfortable. I have asked if that aide can adjust my pillow every night. The nurse tells me that anyone can position my pillow for me. If I put my call light on too often because I am not comfortable the staff gets angry. The nurse says she's going to document everything. The documentation would be in my chart. Thankfully, she hasn't documented anything.

There are aides that make me feel comfortable. I trust them. But, there are also are aides that do not listen. They just want to do their job. They do not even take the time to ask my name.  

Living in a facility it is all about trust. I want to feel that the staff who cares for me is listening to me. I want to know that they are taking their time and doing the best job they can. I want to know that they are giving me the care that I deserve. If that means that I am spoiled, I guess I am. And, that's okay.

Friday, March 10, 2017


Being on Medicare/Medicaid is a very humbling experience. It is difficult for my family because they are now responsible for whatever bills my insurance will not pay for.

 I loved to go out and have a drink and a good meal every weekend. I did whatever I wanted to do. I didn’t think about money. I was spoiled.

I have always been physically dependent on caregivers. I learned quickly, when I moved here, that my needs may not be as important as the needs of another resident. I am not the most important person anymore.

 I have become financially dependent as well. I worry that I have become a burden to my family because they have to pay for the things I am unable to pay for. I know it is not fair to them. I cannot earn much, but I am trying to get writing jobs. I make calls, people express interest, I follow up with another call. I am told someone will get back to me, but the call never comes.

I have stopped going out. I don't use my phone much. I am trying to do everything I can to save money.

My chair is very old. I worry it will stop working I know residents who have been waiting more than six months for parts and chairs. The government does not;t think residents of nursing homes need power chairs. It sucks if you have to be pushed around because your power chair is not working. Power chairs mean freedom to those of us who use them.

The dentist that comes here does not x-ray a patient’s teeth. This concerns me because I had issues years ago as a result of my teeth not being x-rayed every year. If I want good dental care my family will have to pay for me to see a dentist. Oral hygiene is not a priority here. There have been times I have had to fight to get assistance with brushing my teeth. I am not proud of it, but I do what I have to make sure my needs are met.

What happens when the proposed state block grants run out? If all the people with disabilities needs have not been met,? Will they just be out of luck?

I am sure the legislators who want to cut services have never been physically or financially dependent on anyone. They have no idea how degrading and demeaning it is. It makes you feel worthless because it lowers your self-esteem.

Click on the link for the latest information from  The Consortium For Citizens W ith Disabilities, an organization that seeks to ensure that the 56 million disabled Americans have what they need to be fully integrated into society. The CCD  is seeking to protect. Medicaid and the Affordable Care Act, from proposed budget cuts/

I have known many people who are on Medicaid. I thought it would never happen to me. Now, it has. It is a very humbling experience.

I'm still here. I will not give up. .Like all disabled, Americans, I will keep fighting for my rights. I will keep fighting for the kind of life I deserve.

Thursday, March 2, 2017


Last week I went to Paraquad.  My goal was to enter their transition program. It is a program that assists people with disabilities in transitioning out of nursing homes back into the community. 

Transitioning out of here won't work for me. It is too risky/ I do not want to try and fail. I might end up in a facility much worse than this one. I am blessed to have my own room. The state will only provide half of the number of hours I need. At least, for now, I am stuck here.

There are houses that three or four people with disabilities live together in.  They are not group homes. The are jut regular houses staffed with caregivers for the people who live there. Shortly after my mom died I was offered the opportunity of moving into one of these houses. They were looking for a fourth person. I declined because I could not imagine leaving my home. Today, knowing how things turned out, I wish I had accepted the offer. I may look into living in a house like that in future. Paraquad is keeping my case open.I was told I could call them with questions or concerns anytime.  

I have not accepted living in a facility. What has changed, however, is that I am not desperate enough to do anything where I might put myself in danger.  I was forced from my home once. I never want to experience that again.

I am still working with The Starkloff Disability Institute  I will not be making the 17-mile trip to the institute. I will be working with them via email. I appreciate their flexibility and willingness to work with me. I am looking for jobs I can do from here.

I am not happy with my situation. Sometimes, when I have been waiting a long time for assistance with the bathroom and I feel my bladder will burst or there is no aide to get me up in the morning because someone did not show up. I wonder what I did to deserve this. I wonder if I will make it.

I remember how strong my mother was. I know I will make it. I will survive.

Wednesday, February 22, 2017


My voice It is the one thing about me that works well. I am blessed.  Some people with CP have difficulty communicating. Unless I am excited or upset people have no trouble understanding me. That was not the case last week.

I lost my voice due to seasonal allergies with post-nasal drip. I was told it was the post-nasal drip that was irritating my throat causing me to lose my voice.  It certainly was irritating, but not just to my throat.

My voice became a high-pitched squeak that was funny and annoying at the same time. I could still make myself understood. The next day, however, was a completely different story. My voice was gone. When I tried to force myself to talk my chest hurt. Nothing came out but an occasional akin-alien-like noise that frightened people. It was embarrassing/, It was also frustrating. I can't write. I couldn't make myself understood by writing things down.  It was tiring having people repeatedly ask, "What did you say/?" Or say, "I am sorry, but I can't understand you, " Then they would leave the room not caring about what I was trying to tell them.

I often feel powerless here. I feel like no one is listening.  Nothing changes.  There are residents here who need more care than I do. I  I know I am a low priority. I need to use my voice to make the staff aware of what I. need.   I need my voice to make sure  that I am not forgotten

Thankfully, the meds worked. My voice is back to normal.. I will never take it for granted again. I   have a new understanding of the frustration that people who have difficulty communicating experience on a daily basis. It's hard. People don't want to take the time to listen. 

People with disabilities need their voice, both literally and figuratively. We don't want to feel powerless and forgotten.  Having a voice empowers you. Speaking up for what you need ensures that you won't be forgotten.

Speak up. Use your voice!


Tuesday, February 7, 2017


Since moving to this facility, I have witnessed major changes in regard to staffing. I have seen residents walking up and down the halls looking for staff to assist them. Not only have I witnessed this, I have been one of the residents looking for someone to help me.

The number of CNA's  to resident ratio varies from state to state. There is no Federal law.  I  spoke with one of the nurses here. She told me if there are 18 residents with one CNA  and a nurse on the floor, the floor is considered to be adequately staffed by the State of Missouri. This is because both the nurse and the CNA are responsible for 9 residents.  In reality, the CNA has to care for all of the residents by themselves.because the nurse has other responsibilities and does not have time to assist with a resident's personal care. Many nights there is just one CNA and nurse on the floor.

Most mornings there is just one CNA and a nurse because a CNA may be running late. when the second CNA arrives, the residents who are on their assignment get a late start to their day. I know a resident who misses breakfast frequently because there is only one CNA on their floor. I  recently read about a health care worker in Georgia who had 24 residents to care for. One person cannot give 24 residents the quality of care they deserve.

According to the National Consumer Voice for Quality Long-Term Care, the Federal government has found when nursing homes do not meet a recommended level of 4.1 hours per day of total nursing time per resident the facility may be putting their residents at risk.

If you think this issue doesn't affect you, you're wrong  Statistics show that over forty percent of Americans sixty-five and over will spend part of their life in a nursing home. That is why I am urging you to become a part of  The Consumer Voice Nursing Home Staffing Campaign. A campaign to raise awareness and educate people on the problem of understaffing in this country. If you have concerns let Congress know by filling out the email form on the Consumer Voice website.

There is a need for higher nurse staffing standards/ Variables such as cost, enforcement, and nursing home bureaucracy should not.hinder facilities from implementing higher staffing standards. Facilities must put residents first.  Staff and administrators go home each night. We are the ones that have to live here. We deserve the best. 

Get involved with The National Consumer Voice. Find out how you can become an advocate for those of us living in long-term care communities.

Sunday, January 22, 2017


I am one of the 56 million disabled Americans in this country. I am scared.

I began to be afraid when at the start of your campaign, you mocked a reporter with a physical disability. I wondered how anyone could be so insensitive. I wondered if you thought about the message you were sending. The message I got was that people with disabilities are not worth respect, but instead, it's okay to laugh and make fun of our physical differences and limitations. 

I am scared that the Disability Integration Act is dead. The act that would have given hope to people like me, who have been forced to live in nursing homes. Hope that we may someday get our lives back. Hope that we will be part of our communities again. No one should be penalized and placed in a nursing home because states won't pay for the services necessary to keep them in their homes. Nursing homes are for the sick. They should not be used to warehouse people with disabilities. Nursing homes are understaffed and the staff that is working is extremely overworked. These two factors affect resident care, not in a positive way.

I am scared that cuts to Medicare and Medicaid will limit my freedom. I use a  power chair. Medicare doesn't think residents of nursing homes need power chairs. It can take up to six months or longer to get chairs or parts for chairs using Medicaid. My chair is very old. I have not gotten a new one because I don't want to have to depend on other people to push me around. That is just another way of limiting my independence.

I will never be able to support myself.  My family helps tremendously. They see that I have what I want as well as what I need. I want to be able to pay for some of my expenses myself.  That's why getting a job. is so important to me. I am labeled severely disabled. The Department of Vocational Rehabilitation has deemed me unemployable. Insurance won't allow me to earn much. I won't let that stop me. I know that I will get a job. The question is not if, but when. 

I hope that you will create jobs as well as bring jobs back to the United. States. The revenue from those jobs can be used to help fund Medicare and Medicaid. Disabled people cannot afford to lose funding to support services we need to live full lives.

I hope that you will remember that we are people. Please don't forget about us. 

I am praying for you and our country as you begin.your term in office. 

Monday, January 9, 2017


Robyn Rosenberger didn't set out to do anything special. She just wanted to make a superhero cape as a birthday present for her nephew, She wanted to make him feel cool and special.  She never imagined that the superhero capes she'd made for family and friends would turn into something much bigger. And, help so many

Robyn sent superhero capes to a little girl named Brenna after reading a blog about her. Brenna had been born with a rare and severe skin condition. Robyn also sent one to  Brenna's brother.  Out of that simple gesture of kindness, Tiny Superheroes was born.
Robyn's superhero capes have helped children battling serious illnesses like cancer and disabilities. like autism.  When a child wears a cape they feel empowered. They have the courage and strength necessary to face whatever challenges they may encounter.The cape is a symbol of hope to a child. Or, maybe a child just needs to know how awesome they are. Robyn has a cape for them too.

In the first year, 4,000, capes were sent out. Superhero capes have been sent to all 50 states as well as 16 different countries. That is amazing when you remember Robyn began making superhero capes as a hobby/ 

You can help by nominating a child you would like to have receive superhero cape. All you need to do is submit their story. Take a minute to read the stories of the children who are on the waiting list to receive a cape. You may decide to sponsor a deserving child. 

If your child becomes a member of Tiny Superheroes, each month they will receive a mission to complete. Upon completion of their mission, they will receive a patch for their cape. how cool is that?

It is about bravery, courage, hope and being proud of who you are.

Get involved. Read the stories. Sponsor a child. Nominate The Tiny Superhero in your life. Make a difference. You'll be glad you did.