Thursday, December 31, 2015

KEEP MOVING FORWARD

In a few hours 2016 will be upon us. I wish I had something profound to say. My wishes and hopes for the coming are year simple and straight forward. 

I want to move forward in my life. I am going to try to repair as many relationships as I can. The ones I can't, or the ones that make me unhappy,I will have to accept that I did the best I could and move on. 

It has always been difficult for me to have a positive attitude. This year I am going to make a sincere effort to be more positive. I know It won't be easy but I am going to give it my best shot. There   is not much to be happy about when you live in a facility, While I am here I'll try to find something positive in the experience. I was happy to be safe and dry during the rain and terrible flooding this week. 

I want to write more blog posts in the coming year. I want to read more. A book can take me anywhere.

i want to explore opportunities. From writing to living opportunities. I want to see what is out there waiting for me.

I want to be a better sister, aunt and friend in the coming year.

Moving forward is scary. Will I have failures? Yes. All I can do is try.  Try to be the best person I can be.

Good luck in your Journey. Keep moving forward. 

HAPPY NEW YEAR. 








Saturday, December 19, 2015

DEAR JOANNE

I have read several posts from other bloggers in which they write letters to their younger selves offering insight and advice. I decided to give it a try.The following is my letter to my fifteen year old self.

Dear Joanne,

I am your older self. I am fifty-eight years old. At the age of fifteen, I am sure that seems ancient to you, but trust me, the time goes by faster than you expect. When you get closer to fifty-eight, it won;t seem old at all.

Right now life is pretty easy for you because Mom does everything. I know you never liked the social groups for teens with disabilities, but get involved in one. You might make some connections that will help you later in your life. Look toward your future because Mom will not be around forever. Take on as much responsibility as you can. When others give you advice, be respectful and listen. You do not know everything. Learn to make decisions and be confident in them.  

Get involved with an independent living center soon after you finish school. Move out on your own. It may not seem like it now, but moving out, will be the best thing for you and Mom. 

Be proud of your accomplishments. There will be many. The kids at school laugh at you and think you are weird. You are unique. You will be successful. You may not make a lot of money or be able to work full time, but you will contribute to your community and help others. That is the best kind of success.

Mom's death will be extremely difficult for you. I am not sure you'll ever really get over it. you just have to go on the way she would want you to.

You'll make mistakes. Burn bridges. You'll say things you cannot take back. But, you'll also have some unforgettable experiences, travel, meet some great people and do things you never thought you could do.

I live in a facility now. I don't believe it will be forever. It's just a stopping point. A. place for me to gain the skills I need to have a better life.

The best advice I can give is to face your fears. I have a lot of trouble doing this. Everything scares me. If you can face your fears, you'll be okay.

Love,

Your Older Self












Sunday, December 13, 2015

HOLIDAY BLESSINGS

i am a glass half empty kind of person. It has been difficult for me to see the positive side of my circumstances since moving to a facility. I have lost so much. My life is totally changed. I didn't know if I could write a holiday blog because I didn't know what my message would be. No one wants to read a depressing blog post.

I forced myself to start looking at the positive things in my life. I have a private room with a balcony and a large closet. Many residents have to share a room with little personal space. .I know how lucky I am to have my own room.

Since Thanksgiving, several things have happened that made me stop and reflect on how blessed I am.  

I turned my blog post on Donald Trump into a letter to the editor and my letter was published in the St. Louis Post Dispatch. I wouldn't have considered doing this had it not been for a friend who thought that my blog post was good enough and deserving enough to be submitted for consideration. I am blessed that my friend believed in me.

I miss Christmas at home. I miss my tree with my Suzy's Zoo Village  under it. Several weeks ago my brother put up a tree in my room. He also brought a box of family Christmas decorations with him. It's a new tree, but it is  adorned with ornaments and decorations from home.I look at the tree and smile. I smile because I see the wooden ornaments my mother painted hanging on it. But, I also smile because my brother took the time to put  up a tree and decorate it with things from home.  It meant a lot to me.

I am blessed because I have not been forgotten by my friends since moving here. I know they have families and lead busy lives, but they still manage to find the time to visit. I hope they know how much I appreciate their visits.  Their visits allow me to forget where I am for a while. And, they always make laugh . And, laughter is very important. Some. residents rarely have visitors. I am blessed to have frequent visitors.

So, maybe the glass is not half empty after all. I have a family who loves and supports me. I have friends who make to for me even though they are busy.  Maybe the glass is not even half full. Maybe the glass is filled to the top ready to overflow.

May your glass be filled with joy and blessings this Holiday Season..   








Thursday, December 3, 2015

KYLIE JENNER

First, Donald Trump mocks a reporter with a disability. Now, Kylie Jenner has posed in a wheelchair on the cover of Interview Magazine. She called it a fashion statement. http://www.interviewmagazine.com/culture/kylie-jenner#

It is obvious that choosing to pose in a wheelchair on the cover of the magazine was in poor taste and showed a lack of maturity on Ms. Jenner's part. What upsets me more is the kind of message she's sending to her fans. In my opinion, she is trivializing the importance of wheelchairs, making them appear to be props or toys., The cover photo sends the message that a wheelchair is something to have fun with. When in fact a wheelchair is a means of mobility and independence for many people with disabilities including me.

When the photo shoot ended, Kylie Jenner could get out of the wheelchair on her own. She didn't have to wait for someone to come and transfer her the way I do. If she is against bullying, why then would she choose to pose for a magazine cover in a wheelchair? By doing so she is mocking every person for whom a wheelchair is a necessity, not just a prop or fashion accessory that will be discarded when the photo shoot has ended.

Ms. Jenner also stated that she feels limited in her career. She has no idea what it means to be limited in what you can do. Having to depend on others to assist you. Having to plan everything even the most basic things like when you can use the bathroom. I am sure Ms. Jenner has never had to do that.

I would like to encourage Ms. Jenner to visit a rehab or nursing facility. There she will see people dealing with real struggles and limitations. And, I hope she'll regret choosing to use a wheelchair in that cover shoot. I hope she will see that for most people who use them, a wheelchair is not a choice. .   



Friday, November 27, 2015

SPEECHLESS

When I first saw this video of Donald Trump mocking a reporter from The New York Times who has a physical disability, I was speechless. http://thehill.com/blogs/blog-briefing-room/news/261364-trump-faces-heat-for-outrageous-mocking-of-reporter-with

I thought the passage of the of the Americans With Disabilities Act meant that the citizens of this country had become more accepting and tolerant of people with disabilities. I never expected to see a person seeking to become President of the United States acting like a ten year old. I just shook my head. I can't believe this person actually has a chance at becoming President and making decisions for our country. The thought gives me chills.

Mr. Trump was not only mocking Mr. Kovaleski. He was mocking every person who is disabled in this country. He was also telling the children of this country that it's okay to make fun of someone who is disabled because they don't deserve respect.

Mr. Trump's actions made me sick and sad. I'm sad because people with disabilities work so hard for acceptance and equality. I thought we had come a long way. I know now that we still have a long way to go before disabled people are totally accepted and treated with dignity and respect.

I would like to remind Mr. Trump that everyone has some kind of disability. Some disabilities are visible, some are not.

I applaud Mr.Kovaleski for being a positive role model and showing what people with disabilities can do when they are given a chance. . 



Sunday, November 22, 2015

A GOOD CAREGIVER

On December 3rd, Voyce will host the 21st annual Caregiver Awards Luncheon. 89 caregivers from 55 long term care communities will be honored. For additional information and tickets please go to: https://www.facebook.com/events/838596366255790/

I was asked to write about a positive experience I've had with a caregiver since moving to a facility. I have to be honest and say, I have not had that many positive experiences. The majority of caregivers I have encountered since moving here just want to get finished caring for me so they can move on to the next resident. Some don't even take the time to ask my name or tell me theirs. Preferring to call me Baby, Honey or Sweetie instead. i find these names to be very disrespectful.

The good caregivers are the ones who take their time. They treat me like a person, not just a body. There is a caregiver here named Patricia who embodies all the qualities of a good caregiver.  Patricia is smiling and friendly when she comes into my room. She takes her time and doesn't rush through my care. She listens if I have a suggestion about how to do something for me. And, she talks to me. One night before leaving my room, she showed me pictures of her children and grandchildren. I really appreciated her taking the time to tell about her family. 

Patricia is a warm, caring and compassionate caregiver. She never makes me feel like I am bothering her. We need more caregivers like her in long term care communities.

  






Saturday, November 21, 2015

HAPPY HOLIDAYS

Well, the holidays are here. They had the big Thanksgiving dinner here last Thursday. Residents celebrated with their family and friends. I was blessed to have my family in attendance. Some residents, however, were not as lucky as I was.

Yesterday, I was talking with a resident. I asked them if they enjoyed the dinner. Their response was,"It was okay. My family didn't show up. When I called to ask if they were coming, they said they had forgotten all about it. I sat at our table by myself." I was shocked. How could the resident's family have forgotten about the dinner?  When I asked this person what they were doing  for Thanksgiving, They told me nothing because their family would probably be going to other relatives. Again, I was shocked.

A nursing home can be a very lonely and depressing place. Especially for younger residents. Families think that because our basic needs are being met, we're fine. They can go on with their lives and forget about us. That is not the case. We need friends and family. I have  good support system of family and friends. Many people have no visitors over the holidays. They are alone.

I am asking all my readers not to forget about people in nursing homes this holiday season. Go to a facility in your area and spend some time there talking to residents. You have no idea how much you'll brighten their day. If you have a family member in a nursing home that you rarely visit, you should be ashamed of yourself.  Go see them today. They need you.

There is a program in Pennsylvania called Presents for Patients.  https://www.facebook.com/Presents-for-Patients-160314147336019/?fref=ts  A person adopts someone in a facility to make sure they are not forgotten this holiday .  You don't have to be a part of this program to make a difference. You can do the same thing in your area whether there is a program or not.

Please help to make sure it is a happy holiday for everyone.











Tuesday, November 10, 2015

IN A PERFECT WORLD

I was hotlined  by an anonymous individual. A social worker, from the State of Missouri  came to my house to investigate. As a result of that investigation the state determined that it was not safe for me to live in my house any longer. That's the reason I am here. The social worker came to see me a month or two ago. They saw how unhappy I am here. They said they would ask their supervisor what my options are. They promised to came back. They haven't. I can only assume that means I have no other options. I am afraid to call the social worker. to find out. Afraid of their answer. 

In a perfect world, I would have been given the opportunity to make changes to allow me to stay in my home. Instead, I was given five days to move from my home. If I hadn't cooperated, I would have become a ward of the state. I am grateful my. family didn't allow that to happen.

In a perfect world, I would be able to move into a supervised apartment or assisted living situation where there would be fewer people who need help.  And, I would not have to wait for help until  I feared my bladder would burst. I do not want a servant. I just want to be able to use the bathroom when I need to without the constant fear of having an accident if I am forced to wait too long. Having an accident is degrading.

In a perfect world, Paraquad would give me another chance at employment. I have made many mistakes. Leaving Paraquad was probably the biggest mistake I have made. If I had stayed with them, I probably wouldn't be in the situation I am in now.

In a perfect world, I would be paid more often for the writing that I do. 

And, in a perfect world, I would not anger people who are trying to help me. I have burned many bridges. Said things I cannot take back. I still believe I deserve one more chance. The chance to live a life outside of this facility.

The world is not perfect/ I have no idea what the future holds for me.I pray this is not the end of the road for me. I don't want to I die here. I hope I get the chance.to try again.

 ,






Sunday, November 8, 2015

IF I COULD TURN BACK TIME

I became a fan of Sonny and Cher's when I was fifteen years old. I watched them on television and bought their albums. I played them constantly. I knew the jokes from their live albums so well that when I saw them in concert, I said the jokes right along with them. I made scrapbooks filled with pictures my grandmother cut out of gossip magazines for me. I spent so much time at the drugstore magazine rack, that when my teacher saw me looking at the magazines, she referred to the drugstore as The Library. The walls of my room were covered with posters. And, I had a cardboard standee that was a promotion for Cher's solo album, Stars, standing proudly in my room. It was  so tall, it almost looked liked Cher was actually in my room. After I put a hat it, well that really freaked anyone out who came into my room for the first time.Yes, I was a diehard S and C fan.

I wanted to write them a letter, but I didn't have an address. Because I read all the gossip magazines, I knew the area where they lived in California. I sat at my electric typewriter and wrote my letter. I don't remember what I said in the letter, but I am sure at fifteen, I poured my heart out to them.  I addressed it to, "Sonny and Cher, Holmby Hills, California." That was all the address I knew. My mom put a stamp on it and mailed it.

I don't know how much time went by, probably several months. One Saturday, I heard my mom talking to the mailman. "Oh, if I don't pay this my daughter will die," she told him.The piece of mail had eight cents postage due on it,

My mom brought the envelope into the kitchen. It was from CHER!!! After I stopped screaming , hyperventilating and  Mom picked me up off of the floor, she opened the envelope. Inside was a personally autographed photo of Sonny and Cher. The signature was hand written in ink."To Joanne, Love, Sonny and Cher." The handwriting looked just like the handwriting on one of my posters. It really was from Cher. I loved it.

Then, on June 26, 1975, the unthinkable happened. Sonny and Cher got divorced. I was crushed and devastated. I was absent from school the next day and word around school was that I was home with a broken heart. I stopped playing their music. If that wasn't bad enough, I ripped up the photo. 

I look back on it now and wonder what I was thinking. How could I have ripped up that photo? More importantly, what would Cher think if she knew?

So, Cher, If you happen to be surfing the net and run across this post in the Blogosphere, I apologize and beg your forgiveness. I was young and  you know when you are young you do some dumb things. Okay, so I did a REALLY dumb thing. I hope you will forgive me. I hope that you won't revoke my title of being your #1 fan in St. Louis. I can't turn  back time, but I wish I could.












Friday, November 6, 2015

WHAT'S IN A NAME?

My name. Throughout my life people have called me Jo, Joan and Joanna. One of my aunts even called me Joanie.  People are constantly misspelling my name too. The most common spelling error is that people leave the E off of my name, spelling it, Joann. Mispronouncing  or misspelling my name never really bothered me because it never happened that often. It never happened that often until I came to this facility.

I have come to the realization that my parents should have named me Joanna because that's what the majority of nurses and aides called me. Aides have mixed me up with another resident whose name is similar to mine. This resident had a health issue that required checking their vital signs regularly. I was awakened at midnight several months ago. I was told my vital signs needed to be checked because I had a health issue. I told the aide I would know if I had the health issue that they were referring to. I asked to see the nurse. The nurse came after several minutes. Turns out, they'd mistaken me for the resident whose name is similar to mine. The aide was new and wasn't familiar with all the residents yet. This time it was an error in taking vital signs. What if there had been an error in medication because someone got our names mixed up?

If aides don't know my name they will call me Baby, Honey or Sweetie. An aide admitted to me once that they called me Baby because they didn't know my name. I make it a point to introduce myself to new aides and ask there names. Things are getting better because now I tell people when they mispronounce my name.

I was named for my maternal grandmother, Anna Josephine. and for all those named Joseph in my father's family. That means a lot to me.

Our names are part of our family history. I am sure there is a story behind your name too. A story that is unique and special. That's what's in a name. 






Monday, October 19, 2015

MY ROOM IS MY CASTLE

My Kindle was stolen last Thursday. I got up. I checked my email as I do every morning. The pink bag, with the Kindle inside, was on my desk. The power cord was plugged into the base. By noon all of it was gone. I want to thank the administrator of this facility for doing all they could to locate my Kindle. I want to thank my family for calling the police so that I could file  a police report. It has  been four days. I must accept that my Kindle is gone. The administrator has ordered a replacement. In a few days it will be as though the incident never happened. I appreciate that my Kindle is being replaced more than I can say, but is that really a solution?

I understand that it is a state law that the rooms of resident's cannot be locked because staff needs to be able to get to residents in an emergency. However, I think that if  a resident is not in their room and their door is closed, their privacy should be respected. Anyone can walk into a room at any time. I came back from the library one day to find a man I had never seen before washing the windows in my room. I realize this needed to be done, but it was still unnerving to find someone  I'd never seen before in my room. 

The disabled and elderly population are easy targets. I had irreplaceable things stolen from me when I lived at home too.  

Wherever my Kindle is,  I hope someone is enjoying using it as much as I did. Whoever has it will have to answer to God someday.

I hope that in the future facilities will find a way to respect and protect a resident's privacy a little better. Our rooms should be our castles. 









Wednesday, October 14, 2015

ONE YEAR

It has been one year since I've had to move into a facility. I am sure you can understand why it is not a happy anniversary for me. However, I thought I should write something about it because a year is three hundred and sixty-five days. In that amount of time  I hope I have learned something that is interesting enough for me to blog about. 

I have learned  that my needs are no more important than anyone else's here. I am one of twenty-four. We all need care. I must wait my turn. 

I have learned how to be transferred using a stand-up lift. This was scary for a while. After being strapped in you are supported so your aide can just roll you from place to place.

I have learned not to get used to the same person caring for me. People come and go. You have to go with the flow. This is difficult for me because every time I have a new aide, I must start over explaining what my needs are.  

I have learned I have very little privacy.From laundry to the aides,  people come in whenever they need to.  People have come in sometimes when i am being given a shower. They act like I am not even there.  They would carry on a conversation with the person helping me.

I have learned that to some aides it's just a job. They just want to do their job and go home. There are some very kind,  empathetic aides too who do there best to help and understand. We need more aides like that.

I have learned the importance of family and friends. My family does whatever i need them to do. They are always there for me. i am thankful for my supportive friends. I couldn't make it in here with the support of family and friends. I always appreciate your visits.

I have learned how to travel using public transportation for the disabled. I know how fortunate I am to be able to  go out into the community. Some residents never get to go out.

I have learned to turn my circumstances into something positive.  By writing essays.I can use my VOYCE to help promote change.

The most important thing I have learned in the the year I have been here is... I am a survivor.




Sunday, September 27, 2015

100 DIVA BLOG POSTS

This blog post marks a milestone. It's my 100th post. When I  started this blog on July 7, 2012, it's purpose was to see if I could write about anything other than Bianca Bear, the character in my book. It was not to teach or give advice.

Over the past three years, you have gone through my struggles with caregivers, Lucie's illness and death and my having to leave the only home I have ever lived in. You've been through it all with me. Fifty-seven years is a long time. I am not sure l will ever completely get over leaving my home. The good news is I have fifty-seven years worth of memories. I wrote about almost everything that was happening in my life. My hope was that  you would see that a person with a disability struggles, fails, succeeds, but no matter what, they keep going.  

It's been very difficult for me to find anything positive in the events of the past year. It has been the hardest year of my life. However, I have had some wonderful opportunities come my way, as a result of my writing, since moving here. For that I am grateful. 

I am thankful that I am still able to volunteer at my library. That's one thing that has remained the same. It takes a little longer to get there now, but it is so worth it to me.

This blog isn't perfect.  Neither am I. You may find a misspelled word or a comma missing. I apologize for that. I hope that you look past the grammatical errors and read it for message I am trying to convey..In every single post the underlying message is the same.. I am a person just like you. I am doing my best to have a meaningful life. 

Thank you for reading my blog. I hope you'll continue on this journey with me. Here's to 100 more.













   



Saturday, September 26, 2015

I'M LOVIN' IT

Usually, the only time  you see stories about people with disabilities on the news, is when they are in need of something and they need the public's assistance in raising funds to purchase the item, when their rights have been violated or they have been taken advantage of by an unscrupulous individual. A friend posted this story on their Facebook page last night. The title for this piece came from one of their posts. http://www.ksdk.com/story/news/nation-now/2015/09/25/mcdonalds-employee-disabled-customer-eat-alone/72789400/ This story is also about a person with a disability in need of something, but not in the way you might think.

A woman stopped by a Chicago area McDonald's for a bite to eat, but got much than a burger and fries during her visit. She got a lesson in compassion.

A disabled man, in a  wheelchair, rolled up to the counter. He was trying to say something, but the cashier didn't understand him. When the cashier finally understood that the man was saying, "Help me please," he left his register, washed his hands, put gloves on and returned. The cashier cut the patron's food for him and began feeding him his meal. Unbelievable!

How many people would have done what that cashier did? He was truly selfless. Let;s be honest, the majority of people would have not closed their register because they would have been afraid of losing their job. Others might have felt sorry for the disabled man, but figured the man was not their problem. The cashier didn't think about himself, his job or the money the restaurant might lose because he closed his register. All he thought about was that the man needed help and he was going to help him. The world needs more people like that cashier. People who have the ability to put themselves in another person's shoes. People who show empathy and understanding toward another human being.

Several years ago,  I rolled to the bank by myself. I knew that I would have wait for someone to open the door for me. I got to the bank and waited. There was a woman, with her hair in curlers taking on a nearby pay phone. When she saw me she put down the phone, came and opened the door for, me then went back to the phone and resumed her conversation.  I have never forgotten that woman or the kindness she showed me.

Showing compassion doesn't take much effort and it means so much.  





Saturday, September 12, 2015

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. Liliy 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.

In my opinion 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.
















Thursday, September 3, 2015

FINDING MY VOYCE

All of you know how much I dislike living in a facility. The one positive thing that has come out of my being 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 original goal was to become an Ombudsman. An Ombudsman is, a person who acts as a liaison  between staff and residents, addressing resident's grievances and concerns, and assisting in coming up with solutions. However, due to transportation issues and other factors, attending the necessary classes would have been too difficult for me. I was disappointed.

After reading my blog, the staff at Voyce asked me to write essays for them.  They 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 and I would be  answering the questions on videotape. They wanted me to tell my story. The video would 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 tings 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. Lots of lights, the camera and tripod. Finally everything was set. I looked into the camera and I was asked the first question. 

I talked about everything from what it was like for me here, on a daily basis, to what i thought 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 talked for over an hour.The entire process took about three hours. By the time we were finished I was very tired, but satisfied with the things I had shared on the video.

People were telling me now I would be famous. I didn't consent to be a part of the project for personal gain. Sure, it was fun preparing for the video,  I felt glamorous and special.  I consented to be a 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.




















Friday, August 28, 2015

GOODBYE MY FRIEND

I hate goodbyes. This week, I said goodbye to my fellow library volunteer, Marilyn. who 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.  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 have learned a lot from Marilyn. The biggest lesson is not assume or judge. 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 want to thank Marilyn for her support during the past year. I appreciate all the talks we've had. Her thoughts and encouragement have meant a lot to me.  Marilyn loves to cook. I want thank her for all the treats she brought me. Especially the Sweet Potato Pie. It was delicious.

I want to wish  Marilyn well as she continues on her journey to find employment. I know that wherever that journey leads her  she will do the her job professionally, with a positive attitude and with the,help of God.















Saturday, August 15, 2015

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 am able to 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.

For someone who never wanted to own a computer, I cannot imagine my life without my laptop or Kindle now. 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. That was enough for me.

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.. 


 .







Sunday, August 9, 2015

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?

When aides come in to get me out of bed in the morning, I always say good morning to them and 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 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 get extremely frustrated and angry living here.Waiting is very  difficult for me. 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. If I am short tempered,with someone, I admit it and apologize. It may not always seem like it, but I do appreciate the care I am given here

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 parents friends 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.


Saturday, August 1, 2015

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 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 everyday. 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  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 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,. she 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 the 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.

Luke will never really be gone. Thanks to Youtube he'll be around forever/.













Sunday, July 26, 2015

PATIENCE IS A VIRTUE

I found my Snuggie. It had been neatly folded and placed in an empty drawer. I am thankful that I have this link to  my mother back. People told me they hoped it would turn up. Some people even told me they were sure it would be found, but I had given up hope of ever seeing it again after the first week.  I had no faith. I had no patience.

Faith and patience are two qualities you need in abundance when you live in a facility. You need to be patient and understand that when you press your call button, it may take a while for the staff to answer your light. The staff works extremely hard to care for residents. They have a lot of residents to care for. They are overworked.Sometimes it's hard for me to remember this. Especially when I have to go to the bathroom. You have to have faith that your call lights are working properly, so that the staff doesn't accidentally forget about you. The staff depends on those lights to let them know when a resident needs them. 

The dietary staff works extremely hard too. They do their best to serve us. Sometimes, residents are not very patient. Staff can be running around taking orders and serving food and someone calls out, "I didn't get my soup" or "I want to go back to my room." I want to tell them to be patient and wait their turn. It's not that difficult to be patient in the dining  room. We all get served eventually.

Residents have to be patient with the the staff. The staff has to be patient with residents. Residents have to have faith in those caring for them. Faith that they will be cared for with dignity and respect/ Residents need to treat the staff with dignity and respect as well.

The most difficult thing for me about living here is learning to  be patient. Learning to wait my turn. I struggle with this daily. I am not perfect. I am, a work in progress. I do the best I can. I am taking it one day at a time.




Monday, July 20, 2015

SOME THINGS CANNOT BE REPLACED

The facility does my laundry. I have had a number of things go missing. The facility has been more than generous in either replacing items or reimbursing me the cost of the item. I appreciate the concern and willingness of the  staff to make things right in any way they can. However, I have lost one item that cannot be replaced .

The Christmas before she died my mom was given a Snuggie. I am sure that you've seen the commercial, showing a woman wearing  a long blanket-like garment with sleeves, sitting in her recliner. After Mom got hers, she'd sit in her recliner watching Game Show Network, warm and comfy in her pink Snuggie. Seeing how much she liked it, I asked her if I could borrow it.  "No, get your own," she told me.

After Mom died, her Snuggie was folded and placed on a chair in her room. I didn't wear it, but each time I went into her room, I'd see it and remember how much she liked it.

When I learned I had to move into a facility I knew that I would take Mom's Snuggie with me. I have used it as a blanket every night since I got here. Feeling my mother's presence as I waited for sleep to come. Having it brought me comfort. 

The Snuggie has been sent to the laundry several times.  I never worried about getting it back because my name was written in it. Someone also told me they knew it was mine because no one else here has one. 

Two weeks ago my Snuggie disappeared. No one from laundry knew where it was. With each passing day, it seemed doubtful I would get the Snuggie back. Then, yesterday, I noticed a pink Snuggie hanging in my closet. It was a brighter pink than I remembered, but I convinced myself that maybe it was a brighter pink due to having been freshly washed. Last night I used that Snuggie as my blanket, but in the back of my mind,  I knew something wasn't right. 

This morning my aide told me that Snuggie was too new to be mine. And, my name wasn't written in it. It was clear that a well-meaning staff member had purchased a new Snuggie for me.  I appreciate their effort, but I don't want a new Snuggie. I want my mom's Snuggie. It is not about the Snuggie, it's about what the Snuggie represents. The memories  of my mom wearing it and the pleasure it brought her. It was like having a part of her with me. That's something that cannot be replaced.













Wednesday, July 8, 2015

JANE AND HARVEY

Below 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.

Monday, June 1, 2015

D2K REVISITED

June 4th, 2015 will be the anniversary of a night I will never forget. It was the night my friend, Jo Ann, and I, saw Cher's Dressed to Kill Tour. We also had the pleasure of meeting her BFF, Paulette who took flowers and chocolate backstage to Cher for me. Awesome. I watch the concert on YouTube often and am anxiously awaiting the release of the official concert dvd. Don't worry, I am not going to write a commemorative post every year. Since it was just last year, I thought it would okay. Cher hopes to resume touring this fall. A viral infection forced her to cancel many tour dates last year.So, let's turn back time to June 4th, 2014. The best night of my life.

http://confessionsofadisableddiva.blogspot.com/2014/06/d2k-what-night.html

I want to take this opportunity to congratulate Cher. She is now a model for designer Marc Jacobs. Pretty impressive for a woman who just celebrated her 69th birthday.

I don't mean to offend anyone. It just seems the right way to end this post. As Cher would say, "Follow This You Bitches."

Tuesday, May 19, 2015

I DID IT!

May 9th and May 15th are two days I will never forget. On both days I did something I never thought I would do, speak to a group of people. Okay, for Listen to Your Mother, I cheated a little bit because my reading was on videotape   When I was videotaped I was asked to read my essay numerous times in order to get the reading just right. I don't read out loud well because I tend to run out of breath too quickly and sometimes feel like I am gasping for breath by the time I am finished, but I did it.

My reading was first. It was a little embarrassing seeing myself on the screen.When I heard my voice my first thought was, "My God, I should never open my mouth again. " But then I thought, "That's me. That's how I sound. Accept it and move on." The nice thing about seeing myself was that I saw how much I look like my mother. 

I felt like a celebrity. Everyone was congratulating me and there were lots of photos taken. What's most important to me though is that I am now part of the history of Listen To your Mother. Something I never thought would be possible for me. The show gave me the opportunity to work with and know some very talented people. I made some great friends.

May 15th, I was a speaker at Trautwein Elementary's Disability Awareness Day. I spoke 5 different times  about my life and how I became an author. The children were very interested in Bianca and are anxious for me to publish my story about Princess Penelope.. They asked great questions. Everything from wanting to see how fast my chair went ,to how do I take a shower?  Some thought for my next Bianca story, she could have a superpower, like being able to fly. I'll have to think about that.

Everyone made me feel so welcomed. Thank you Ellen and Kelly. I hope to be a speaker again next year.

I have always been nervous at the thought of public speaking. I thought I wasn't good at it. I was wrong. I conquered my  nerves.Now I can say, "I did it!"




Wednesday, April 29, 2015

ICE CREAM AND DOGS-MY FAVORITE THINGS

Okay, before you get completely grossed out by the title of this blog post as in why would I want to discuss ice cream and dogs in the same post, let me explain. I think they both provide some of the same benefits. Both offer us comfort in times of stress and both can brighten our day if we are feeling down. At this facility they allow both dogs and ice cream, sometimes at the same time.

The ice cream social takes place six days a week, from two-thirty to three o'clock, in an area in the lobby that has the look and feel of a quaint ice cream parlor. Someone from the activities department is behind the counter dishing out delicious scoops of ice cream. Sure, there is Chocolate, Vanilla and Strawberry, but who can resist trying  flavors named Caramel Caribou, Moose Tracks or Blueberry Waffle Cone? My personal favorites are Orange-Pineapple and Coffee. There are three different flavors to choose from each day. There are even days when milkshakes and root beer floats are served up. Every Wednesday is the popcorn social. Popcorn is made in a movie theater style popcorn machine and served in bags. The socials are a place to visit with other residents. I have met other residents and enjoyed talking with them while eating my ice cream.

Sundays are when not only is there ice cream, but you might see the dogs from Love on a Leash during that time too These dogs and their owners go through training to become.pet therapy dogs. I have written blogs in the past about the benefits of bringing dogs into facilities, but now that I reside in one, I know firsthand how much these visits mean. These dogs are gentile, loving creatures whose owners make sure you get to spend time with each dog. I have difficulty reaching down to pet some of the dogs, so the bigger dogs are better for me as they can stand or sit at the side of my chair and I can pet them easily. Love on a Leash visits on Sundays and Tuesdays. I wish they came everyday.

I couldn't end this post without telling you about another dog who comes every Monday with his owner, Jane. His name is Harvey. Harvey is all black, black fur, black eyes. Jane holds Harvey in her arms and when I talk to him he gives the impression that he can't be bothered and turns his face away. I continue to talk soothingly to him and pet his paw. Last Monday as I was doing this, Harvey put his paw on my arm. Jane said, 'He must like you. He rarely does that to anyone." Then, he turned his face. We were almost nose to nose. For a minute I thought he was going to give me a kiss on the nose, but he just sniffed. "Did he just give you a kiss?" Jane asked. "Almost." I told her. She was amazed because he never kisses anyone. I know my nose kiss is coming. I'll be patient Harvey.

Dogs and ice cream. You can't be sad when a dog is around or when eating ice cream. Both make people happy. That's why they are two of my favorite things.








Wednesday, April 22, 2015

MY JOURNEY TO LISTEN TO YOUR MOTHER 2015

I have been a fan of Listen to Your Mother since the very first show in St. Louis. I love it because it pays tribute to mothers as well as anyone who takes on the role of a mother in a child's life. The stories are sad, happy, humorous, they cover every emotion, but most of all, they are real. I don't have children, but each year, as I sat in the audience listening, there was always something in each story that reminded me of the relationship I'd had with my mom and by the end of the show I usually had tears in my eyes because the stories I'd heard were so moving. I wished I could pay tribute to my mother in such a meaningful way, but there was no way I could do it because I don't like to speak in front of people. Believe me, when I do, it is not pretty,so I put the idea out of my mind.

Then, one Sunday afternoon, when I was alone in my house I sat at my laptop and began typing.  I wrote from my heart about my mother, our relationship and what she meant to me. An hour later I had written my essay, 

I went to the website, sat there looking at it for quite a while. Then, even though I knew they wouldn't choose my story, I hit the submit button. It was done.

I forgot about it until one morning when I checked my email. There was an email from one of the producers telling me I had been chosen to audition. I couldn't believe it. When the night of my audition came,I was nervous, but Ellie, Laura and  Naomi, the producers, put me at ease.  I auditioned thinking it was just for fun and there was no way I would be chosen to be in the cast.

But I was. I couldn't believe it. I was thrilled beyond words. Sadly, rehearsal schedules and my caregiver schedules  didn't fit together. I had to drop out. I sat in the audience last year wishing I had been able to share my story.

The day of the show last year, Laura told me how much they had wanted me in the cast. "Wherever you are next year we will find a way to share your story." They found a way to make me feel less nervous and turned my dream of being a member of the LTYM cast into a reality.

Being in this show is about more than paying tribute to mothers. For me it's about acceptance, the fulfillment of a dream and support. The support of the producers who thought my story was good enough to be a part of the show. I want to thank them for finding a way for me to tell it that is comfortable for me.

Please come to the show if you can. Each cast member  has a unique story.Stories you won't want to miss.

To order tickets go to https://www.eventbrite.com/e/3rd-annual-listen-to-your-mother-show-st-louis-tickets-15505132268
















Sunday, March 29, 2015

HE UNDERSTOOD

I have been seeing a therapist here since last fall. Rick would come every Friday, listen to me and try to help me learn better communication skills as well as ways to cope with having to live in a facility. He would come without fail. 

I thought it was strange when he didn't show up by dinnertime. Over the weekend, I learned the reason why. While on vacation, in Florida, he was the victim of a hit and run. A truck ran him down. I was, and still am, in shock.

Rick understood the frustrations and the difficulties that come with living in a facility.He got it. He knew it was not easy. For me personally, He understood that I will never consider this facility my home. It is just where I have to live now. He treated me with respect and dignity The one thing that I always remember is that when we were talking he would say to me, "Well, you're a social worker, you know how it is."  Many times, when you have a disability, people talk to you as though  you are not intelligent. Rick never treated me that way. He treated me as  an equal. I am sure he treated everyone here the same way. He wanted to help me and everyone here get what they needed to make their lives better. The other thing he always said to me was, "i want what you want. I'm here for you."

Rick only saw residents here who are on Medicaid. I'm not. I was told he'd been seeing me for free. 

The last time we were supposed to meet he was running late. They have happy hour here once a month. I had planned to go.  Rick  told me to go to happy hour and he would see me again in two weeks when he returned from vacation.

Thank you Rick for caring about the things that mattered  to me. Thank you for wanting to help me become a better person. I will never forget you.