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

. My mom would be so embarrassed that I used this photo. "Oh, for heaven's sake, my hair's in curlers." My mom washed her hair every Saturday and put it 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

ESCAPE TO AGUA AZUL

Living in a facility is not easy. I have heard it compared to living in a mental institution or a prison, There is so much noise in the dining room I cannot have a conversation with the person sitting across from me.  I

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 produced in or televised form, in Latin American countries.

Unlike American soap operas. telenovelas usually run for a maximum of a year. That's the first thing that attracted me to them. I love American soap operas. 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 Stole 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 to solve their financial problems. Alejandro inherited his father's fortune.  He promises to pay all 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 isn't only limited to English. 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 allowed me to escape this facility.  It did not 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.








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THE BIG 6-0

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!!

THANK YOU FOR BEING MY FRIEND

When I was 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 PTs in the 1960s. 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 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 the characters and plots. When I was young, those books were the coolest books I had ever read. Those books came with me when I moved here. I couldn't bear to part with them.

JoAnn did my hair and makeup on the day of my prom. The night itself was a disaster. My date and I had nothing in common. My prom was special because 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 that 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 said to 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.

I HAVE CEREBRAL PALSY

"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 should be given more 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 stand lift and I need assistance in the bathroom. Sometimes they need to be given background information. It is up to me to educate them about my CP.

Cerebral Palsy is a disability 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 helping me out of bed I tell them I do not have balance. They cannot let go of me. I ask them to pull me back on the bed. I do not like to feel that I  am sliding off the bed. Feeling like I am falling is just as scary as having it happen.  I once told a new aide not to let go of me when my aide was helping me to bed. She didn't believe me.  She let go. I fell over on the bed. Maybe she just wanted to see if I was really telling the truth.

 I am one of the 17 million Americans who have 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 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 http://ucpsdfoundation.org/