100 DIVA BLOG POSTS

This. is 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 main character of my children's book.

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.  

This 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.  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 the 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. 

Here's to 100 more.














   

I'M LOVIN' IT

Typically, 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 of another human being.

Several years ago I went 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 payphone. When she saw me she put down the phone, came and opened the door for, meI Then she went back to the phone and resumed her conversation.  I have never forgotten that woman or the kindness she showed me.

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/