MY PERFECT IMPERFECTIONS BY JALPA WILLIBY

I was browsing the Kindle Bookstore the other day. I typed Cerebral Palsy in the search box. I expected to see textbooks or medical books on the subject and I did. I also saw a novel titled MY PERFECT IMPERFECTIONS.

 http://www.amazon.com/My-Perfect-Imperfections-Jalpa-Williby-ebook/dp/B011H491IE/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1442072328&sr=1-1&keywords=my+perfect+imperfections.

It was listed under Cerebral Palsy Romance. I have never read a romance novel in which the main character had CP. I was intrigued. 

The book is the story of Lily Cooper. Lilly needs assistance with all of her basic needs. She is unable to walk, she uses a communication device to speak and cannot feed herself. As a child, she is protected by her family. Her twin sister, Layna is her best friend. Layna tries to include Lily in everything she does. Layna promises to never leave Lily. Just before their high school graduation, a tragic accident takes Layna's life, but Lily is spared. Lily must find a way to go on without her sister.

Lily's disability is not what the book is about. Yes, the book shows what it is like for a person who is severely disabled to live with their disability on a daily basis. You see her frustration in having to depend on others for everything,, her frustration in having others think she cognitively impaired as well, but you also see her determination to lead a normal life. The book focuses on her strengths  .and abilities, not her disability. She may be physically dependent, but her mind allows her to be independent. Lily is an independent person who just happens to have a disability.

The love story of Lily and Chance is beautifully written.  They were perfect for each other because Chance saw Lily's care as no big deal and Lily gave Chance strength and courage when he needed it most.

I want to thank Ms. Wiliby for writing this book. I wish there had a book like it when I was young. The book, even though it is fiction, gives hope to people with disabilities. Hope that they can have a full life. Get a job, find love and raise a family. Lily had a wonderful support system in her family, friends. caregivers and husband.

The book gives non-disabled people insight as to what it is like to live with a disability .it shows that we all want the same things in life. To be accepted, to be loved and to be treated just like everyone else.

FINDING MY VOYCE

 

The one positive aspect of living here is that I have become affiliated with Voyce. Voyce is an organization that advocates for those of us living in long-term care communities. My goal was to become an Ombudsman.

An Ombudsman is a person who acts as a liaison between staff and residents. They address resident grievances and concerns and assist in finding solutions.  Transportation issues and other factors, made attending the necessary classes difficult for me. I was disappointed.

After reading my blog, the staff at Voyce asked me to write essays for them.  VOYCE wanted to know what my life is like now that I live in a facility. I was told that a set of questions would be drafted from my essays.  I would be answering the questions on videotape. They wanted me to tell my story. 

The video will be shared with staff and residents from facilities in the area.

It took a while to coordinate everyone's schedules. August 27th was the day of filming. I'd done all the things women do to prepare for special events. I got my hair and nails done, chose a dressy outfit, and even had my eyebrows waxed. I was nervous but I was ready.

Setting up the equipment took time. There were lights, a camera, and a tripod. Finally, everything was set. I looked into the camera and I was asked the first question. 

I talked about everything. What it was like for me here daily. I was asked what needed to be improved to make things better for both the residents and staff. Once I began talking I couldn't stop. Someone was listening. It was cathartic. I was interviewed for over an hour. The entire process took about three hours. By the time we were finished, I was tired but satisfied with the issues I had shared in the video.

People were telling me I would be famous. I didn't consent to be part of the project for personal gain. Sure, it was fun preparing for the video,  I felt glamorous and special.  I consented to be part of the project because I hope the video will make a difference. That has always been my goal in whatever project I have undertaken.   Thank you to the staff at Voyce for allowing me to tell my story.  I hope it gets people thinking and talking. That's the first step in creating change.

For more information:

https://www.voycestl.org/

GOOD LUCK MARILYN

This week, I said goodbye to my fellow library volunteer, Marilyn. She was placed at the library through AARP. They have a program for seniors wishing to get back into the workforce. Participants are placed at various locations in order to gain knowledge and to learn to work with people in a variety of settings. The library is Marilyn's second placement. Monday she will .move on to her third placement.  Marilyn and I have become good friends. However, it wasn't always that way.

Being a  greeter at the library is the only job there that I am able to do. The first volunteer, from AARP, that I worked with took over, answering questions, giving directions and assisting patrons. I just sat there.  I did not feel that I was needed anymore.

When Marilyn began volunteering I was resentful. I thought that she would take over as the other volunteer had done. I am embarrassed to admit that I wasn't welcoming. To be honest, I was very rude to her. I almost quit because I didn't want to just sit beside her while she helped patrons.

Marilyn told me she wondered what she had done to make me act that way. She felt very uncomfortable. She didn't enjoy being at the library on the days that I was there. 

Marilyn hung in there. After a while, it was clear to me that she wasn't going to take my job away. She let me perform my duties as I always had. We learned to work together each taking turns assisting patrons.

I learned a lot from Marilyn. The biggest lesson I learned from Marilyn is not to assume or judge anyone. Give a person a chance. Everyone possesses different strengths and knowledge. If you are willing, you can find a way to work together and learn from each other.

I appreciate all the talks we've had. Her thoughts and encouragement have meant a lot to me.  Marilyn loves to cook. I want to thank her for all the treats she brought me. The sweet potato pie.was delicious.

Good luck Marilyn May you be successful in finding employment.  I know that wherever you life journey leads you, you will do your job professionally, with a positive attitude and with the help of God.

IT KEEPS ME CONNECTED

Believe it or not, there are still some people in the world not on Social Media. These people don't know the joy of seeing the number of notifications or friend requests they have on Facebook, the number of new followers they have on Twitter or who has re-pinned one of their pins on Pinterest. How do they survive?

A facility is a community unto itself. You don't have to go out for anything. All of your basic needs are met. Many residents are unable to go out. I know how fortunate I am because I can go volunteer several times a week. On the days when I don't go out, I am grateful to Social Media, it allows me to stay connected to my friends and the world outside of this facility.

I cannot imagine my life without my laptop or Kindle. I purchased my first laptop because I was having surgery and I was going to be at home for six weeks. Until that time I never wanted one at home because I worked with computers all day teaching classes.

I have met many wonderful people and made some great friends through Facebook and Twitter. I became friends with one of the producers of Listen To Your Mother through Facebook.  Had it not been for Twitter, I would not have met Cher's BFF, Paulette You all know how much both of these experiences meant to me. Facebook also enabled me to reconnect with old friends.

You can share ideas, photos, or get suggestions on the next great book to read. There are all kinds of groups to join on Facebook. You can connect with others who share your interests. 

Social Media helps keep me connected to my old life. When I am on it I forget I am in a facility for a while. On Social Media, my disability is not important. I am just a person posting, tweeting or pinning like everyone else   That's reason enough for me to stay connected. 


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MANNERS, A LOST ART?

A patron at the library on Friday, wanted assistance reserving time on a computer. They had attempted to do it on their own but were having difficulty. They were very frustrated. I told them that I would help them. I was moving out from behind the volunteer desk when I heard them say in a disgusted tone of voice, "Oh, never mind, I got it." I guess I hadn't moved fast enough for them. Was what they needed a computer for that urgent that they could not wait a few seconds for me to come over and help them?  What happened to politeness? Is it wrong to expect someone to be respectful when asking for help?

 I always say good morning to my aides. I ask how they are. Friday morning, it was as though I hadn't spoken to my aide at all. I repeated my greeting several times but did not get a reply. Sometimes, when I speak to my aide in the morning, their response is barely audible. I have gotten responses like,

"i don't have to talk to you" or " I don't feel like talking." Yet, they have no problem talking if another aide comes into the room. They carry on lengthy conversations. it's not that difficult to speak when you enter a resident's room. It shows respect for the person.

 I understand the staff's frustration at having many residents to care for and not enough help, but sometimes, I lose my temper. I am not proud of that. However, no matter how frustrated I get, I  always say please, thank you, and speak when someone enters my room.  It may not always seem like it, but I do appreciate the care I am given. 

Respect works both ways. To get respect from my aide I must treat them with respect. 

I will never forget the first time one of my friends called my mother by her first name. I knew they were not deliberately trying to disrespect my mother, but it still sounded so strange to me. I never called my friends parents by their first names. it took a while for me to feel comfortable hearing my friend do it.

I hope that we are teaching our children to be kind and respectful. I hope that they learn to be polite and to not always be in a hurry. I would hate to see manners become a lost art.

THE DAY I MET LUKE SPENCER

On July 27, 2015, Luke Spencer said goodbye to Port Charles. Anthony Geary, the actor who portrayed him for over thirty years, retired from General Hospital. I was fortunate enough to have the opportunity to meet him in the eighties while in California. For my readers who don't watch soaps, this post will probably bore you. But I wanted to write it because soaps have given me the opportunity to meet some amazing people. Anthony Geary was one of them.  

I had finished graduate school and was trying to find a job. I was sending out resumes and making phone calls every day. I would work in the morning. In the afternoon I would take a break to watch General Hospital.  I'd started watching one summer when a friend told me how cool Luke was. I watched as Luke saved Port Charles from being frozen by evil Mikkos Cassidine. I watched as Luke married Laura in one of the most romantic ceremonies I had ever seen. Yes, Luke was definitely cool. But then, Laura disappeared and was presumed dead. What would Luke do without her?

Emma Samms was cast to play Holly Sutton,. Holly was a beautiful con artist with a heart of gold. When Luke met Holly I knew there would be a romance between them. 

I decided to write to Emma a letter. I was sure I wouldn't receive an answer, but it was fun writing it anyway. Several months later, I got a note from Emma's sister, Louise. She was Emma's secretary and answered her fan mail. Louse and I began corresponding. When Louise learned that we were coming to California,.Louise and Emma invited me to the studio for lunch. 

The big day finally arrived. Louise and Emma were so kind to me. I felt as though I had always known them. We got to watch the blocking.  This is when the actors learn where to stand during a scene. Then it was time for lunch. I kept asking where Tony Geary was. They told me he stayed in his dressing room during lunch, but that Tristan Rogers, (Robert Scorpio) would be happy to join us. "No, I want to meet Tony Geary, " I told them. I am embarrassed by how rude I was.

After lunch, we watched a dress rehearsal. I saw Tony from a distance. Louse said she didn't know him that well, but she asked him to come over and meet me. When he said hello, nothing came out of my mouth. I think he asked if I watched the show. I hope I nodded yes, but I can't be sure because I was just staring at him with my mouth open. Not one of my finest moments, but at least I can laugh about it now. He signed  a card, "Love From Luke of Port Charles."  I was in Heaven.

Thank you, Emma and Louise, for giving me memories that I still think about over thirty years later. General Hospital in the eighties was the best. I wish Anthony Geary well. The show will not be the same without him.








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JANE AND HARVEY

The following is my Jane and Harvey interview. It will appear in a future NHC Newsletter. I think a lot of both of them and wanted to share it with my readers.

Jane Yount has been involved in pet therapy for over ten years. She and her previous dog, Max, visited The V.A. Hospital and Ranken Jordan’s Children’s Hospital.  When her mother passed away, one of the residents in the facility where she had lived said to Jane, “Don’t forget about people like us.”  Jane never forgot those words.

Jane met Harvey when he was two and a half years old. He will be nine in November.  Harvey is all black. Black fur and black eyes which is rare for a Shitzu. The breeder had ten Shitzu’s and a pit bull. Harvey’s first home was a horse stall. Usually the owner chooses the dog, but in this case, Harvey chose Jane, coming up to her that first day and never leaving her side. It was like he was saying, “I’m going home with you.” They have been together ever since. 

The two have been coming to NHC for three years/ It all began when a friend of Jane’s was visiting someone in rehab and saw a physical therapist bring her dog here Jane was encouraged to call. Jane called Activities and the rest is history.

Harvey loves coming here. He pulls Jane to get in the door. Harvey gets a lot of attention when he’s here, but he also gives the residents lots of love.